CancerCancerCancerCancerCancerCancer

Health DigestHealth DigestTHEHealth DigestUganda’s walk with

Issue 02 April - June 2012

Cervical cancer

Prostate cancer

Ovarian cancer

Breast cancer

Pancreatic cancer

Burkitt’s lymphoma Kaposi’s Sarcoma

Lung cancer

Skin cancer

Coloretal cancer

Leukemia

Carcinoma

Sarcoma

Lympoma

Myeloma

Inside This Issue

Could your childs toothache be a Cancer ? Page 16

Editor’s MessagePage 1

Uganda has one of the highest cancer rates

Page 2

Uganda was once a World class leader in Cancer research

Page 4

Cervical Cancer. A silent killer of Ugandan women

Page 8

Rwanda; A model of Cervical Cancer equity for Africa

Page 10

Birth control and Cancer: What you should know.

Page 11

Prostate Cancer stelthilly killing off Ugandan men

Page 12

Cancer with HIVPage 18

Uganda’s walk with Cancer Page 20

Over 13,000 deaths in Uganda linked to Tobacco use:

Page 14

Pancreatic Cancer: Another silent killer

Page 15

The power of the spoken word in Cancer care

Page 24

Amazing courage; Children fighting Burkitt’s lymphoma

Page 26

Cancer control and preventionin SchoolsPage 27

Inefficient markets impede Cancer pain relief

Page 32

Palliative care in AfricaPage 28

Interview with Dr. DdunguPage 30

Social media efficacyPage 35

Traditional and modern medecine merge in fight against Cancer

Page 34

Cafe ScientifiquePage 36

Cost of treating Cancer Page 39

Moment of truth: To take or not to take a Cancer test

Page 40

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Once again we are excited to present our next issue of the Health Digest, focusing on Cancer. Cancer is increasingly becoming a huge public health threat in Uganda, but at the same time it is shrouded in mystery, and compounded by ignorance and a stark lack of information.

As health journalists, we explore this disease, taking you through the Uganda Cancer Institute from the 1950s to date, from one oncologist to 11. We bring you the expert opinions and interviews, including Dr Jackson Orem, the Director of the Uganda Cancer Institute, and others fight-ing the battle against cancer in an era where infectious dis-eases have taken centre, while Non-Communicable diseases such as cancers continue to claim lives unabated.

We hope you will find most of the answers that you need about cancer from this edition, and most importantly that you will know that cancer can be defeated with the right information, and proper systems. As usual, the Health Di-gest is an important tool for journalists to connect with the medical practitioners and vice versa.

From the editorial team, we thank the management and staff at the Uganda Cancer Institute, Mulago, and all the contrib-utors who sacrificed their time to write articles. Enjoy!

Annah NatukundaEditor, The Health Digest

Editor’s MessageEditorial Team

Managing EditorEsther Nakkazi

Editor:Annah Natukunda

Senior Consulting Editor:Christopher Conte

Consulting Editors:Marissa MikaEvelyn Lirri

Juliet Nanfuka

Design/LayoutBagmuz Creations

Send all correspondence to:Plot 156-158

Mutesa II Road, Ntinda P. O. Box 4883

Kampala -UGANDA Tel: 256 704 292188

healthdigestUG@gmail.com Website: www.hejnu.com

The Health Digest2

How big is the problem of cancer in Uganda?According to results from the cancer registry we see about 200 new cancer cases per every 100,000 people. By international standards that’s a very high incidence. As far as prevalence is con-cerned, at the current rate of popula-tion growth we are talking of 40,000 to 60,000 people but that’s also a conser-vative estimate. There are many people who are in our population who don’t know that they are suffering from cancer and we have not made any diagnosis.

When it comes to mortality—our country has one of the highest rates in as far as cancer is concerned. For every 100 newly diagnosed cancer patients, we actually lose 80. That means if you’re in a cohort of newly diagnosed cancer, the chances that you’re going to survive is only 20 percent

Why is cancer mortality so high?Most of the cancers in Uganda are diag-nosed late. Many people come when the cancer has advanced and late presenta-tion is synonymous with poor outcomes. But also, it’s not a factor or blame that we can put on the population alone but the whole system because we’ve seen incidences where people have actually come early but their diagnosis was de-layed by a system that could not detect that this is cancer. Patients come late because of lack of awareness and also a lack of health system that can provide

them with the means of having early diagnosis because it’s heavily skewed towards diagnosis of infectious diseases.

What are the more common cancers in Uganda?We are seeing different cancers in the population. Majority of the male pa-tients have Kaposi’s sarcoma, Prostate, cancer of the stomach and liver. For females, its cervical cancer, Kaposi’s sar-coma and breast cancer while among the children Burkitt’s lymphoma, Kaposi’s sarcoma and Leukaemia are common.

Why are these particular cancers common?Close to 40-50 percent of cancers in our setting are related to infection and the pattern of cancer reflects that back-ground. This is why we should include cancer among the long-term effects of infectious diseases especially when it comes to cervical cancer and Kaposi’s sarcoma.

Are these cancers treatable?The good news about these cancers is that they are highly treatable with the view of curing if patients present early. But the only thing that lets us down is that we don’t have a proper system that should be able to help us aspire for the best of outcomes.

So do you mean the Cancer Institute delays with the diagnosis?As a Cancer Institute, we are supposed

Cancer is fast becoming a big killer in Uganda. 80% of all newly

diagnosed cancer patients in Uganda

die. The Uganda Cancer Institute is

still the only cancer centre in

the country taking on this

burden.

Evelyn Lirri spoke to Dr Jackson Orem, the Director of the

Institute on the challenges of

managing cancer.

Uganda has one of the Highest Cancer rates in the World

The Health Digest 3

to be at a referral level so patients should first present themselves at their nearest health facil-ity and it’s from those facilities that they should be sorted out and those with cancer referred to us. But given the weaknesses in the system we are now providing primary elements of care by encouraging people who suspect that they have cancer to come directly to the Cancer Institute.

As the only cancer centre in Uganda, how is this affecting the way you deliver services?It means numbers overwhelm us. Even if you have a good system in a short time, it will be over-whelmed. A case in point is the way we have been putting in place equipment and facilities but it seems we are not keeping pace with the numbers.

What kind of system would help to manage cancer cases? First we need to recognise that cancer is one of the biggest causes of mortality and morbidly in our community. Then it should be followed by a policy for cancer. For instance our country does not have a policy where cancer is a notifiable disease. This means once you make a diagnosis, you must report by law. If you do that in the first place you are go-ing to improve the statistics and then you are able to count all the cases and plan better. Right now most of the things we do are guess work.

Is the Institute financially sound to treat and manage cancers?The government has started giving us resources directly unlike in the past and this started in 2009. This was a big boost and what you see around here is the result of that including the new building. But given the fact that the burden of the disease is so

big, this is like a drop in the ocean. We still need a lot of resources.

Right now we get Shs5billion from the ministry of finance in a year but that’s not even a tenth of the resources that is needed. We need to put in place infrastructure that is costly. Once you have infra-structure, the running cost gets cheaper.

What about cost in terms of treatment?We have a fairly good system for provision of drugs but a good proportion of cost of care is still being born by the patients. And that is one of the reasons why we have bad outcomes. Most of the deaths are not because the disease is so bad but the socio economic circumstances that prevent pa-tients from getting access to good care.

We are trying to push government so that it can address the policy issues—put a cancer policy in place, and we want the institute to be enacted by an Act of Parliament so that it’s spread out in the country, mobilise resources locally and interna-tionally--something we can’t do effectively now. We have a pilot project where we’re working with regional hospitals in Mbarara and Arua to show us how best we can decentralise the system.

How well is the Institute equipped in terms of human resource? We need more people and that’s why we need a policy. We want to be able to have the capacity to train our own people and this requires substantial investment. At the moment we identify those who are interested and get places outside the country to train them. If you had come here 5 years ago, you would probably have met only me but now we

have 8 oncologists and we want to continue with that training for all cadres of cancer specialists.

Oncology is a tough speciality and because the majority of pa-tients who have cancer don’t have that much money, if you’re in the trade because you want a clientele of people who can pay for your services handsomely, you’re not going to get it.

Evelyn Lirri elirri22@gmail.com Incoming science editor, The Monitor Newspaper.

The Health Digest4

In the not-too-distant past, Uganda was a global leader in cancer treatment – an achievement championed by Charles Olweny a medical on-cologist.

A member of the first graduating class in Mak-erere University’s Masters of Medicine program in East and Central Africa in 1968, Olweny went on to become the first Ugandan director of the Uganda Cancer Institute (UCI) in 1973 .

At the time, science conference delegates and those attending the Organisation of Africa Unity (OAU) and other big conferences in Kampala routinely toured the Institute to see a model of an effectively and efficiently run Uganda institution.

“It was relatively hectic but enjoyable,” said Dr. Olweny of those days.

Previously, students who wanted to upgrade to a Masters Level in any medical field were sent to England. But then, Professor William Press-ley from Virginia, USA, and the head of Mak-erere University School of Medicine introduced the Masters Degree of Medicine, Surgery,

Pediatrics, Obstetrics & Gynecology at Maker-ere University. With other young students, Dr (s) Lwanga, Mwanje, Peter Lobo, Batalye, Patel, Babigumira, Dr. Olweny joined the Masters of Medicine class, the biggest of the new classes. His re-search topic was typhoid fever, but even at the time it was a no brainer.

“I wrote my dissertation and took it to Dr. Pressley, and he said Charles, sorry there is nothing new in typhoid fever, you will never make a difference. Go and think again.”

The rejection came with advice about a new group from the USA headed by Dr. John Ziegler, who was treating children who had var-ious Lymphomas- Lymphoma is a cancer of a part of the immune system called the lymphatic system-including Hodgkin Lymphoma disease at Mulago. At the time, nothing was known about adult patients with these afflictions.

“While they were treating children at the Lym-phoma treatment centre, I was treating adults at Mulago hospital. Within two years, I had col-

Profile; Professor Charles Olweny

By Esther Nakkazi

Uganda was once a World-Class Leader in Cancer Research

5 5The Health Digest

lected enough data, and wrote my dissertation. It was approved without any amendments,” says Dr. Olweny.

All the students in his class graduated in March 1970. The following year, 1971, Dr. Olweny joined Dr. Ziegler, AC Templeton and CW Berard, a pathologist at the National Cancer Institute, to co-author a paper ‘Adult Hodgkin’s disease in Uganda’ in a prestigious science pub-lication called Cancer.

That marked the beginning of his long career as a leading expert on liver cancer.

A Flourishing Career In 1971, Professor Lutwama, the dean of Medi-cine at Makerere Medical School recommended Dr. Olweny for training with Prof. George Klein in tumor immunology at Karolinska Institutet, a medical University in Stockholm, Sweden.

He spent a year on clinical rotations in oncolo-gy, the study of cancer, and a second year doing laboratory work. But just about halfway through his training, things went sour in Uganda.

“The message I received was, ‘Better come back now. If you do not, there will be nothing to return to,” said Prof. Olweny who returned in March 1973. Then-President Amin had given 90-days notice for all Asians to leave Uganda, and even those of non-Indian origin left – among them Dr. Ziegler.

“When I returned, I reported to the head of medicine at the Medical School, John Kibuu-ka Musoke,” Dr. Olweny recalls. “He said, ‘Charles, welcome back. You are going to run the Uganda Cancer Institute.”

Professor Sebastian Kyalwazi, the outgo-ing head of UCI, promised his support. He was one of the first and greatest surgeons in Uganda. True to his word, in spite of his busy schedule, Prof Kyalwazi came down to do ward rounds with Dr. Olweny once every week, allay-ing the young doctor’s fears.

On a normal day, Dr. Olweny would leave home early in the morning, do administra-tive work from 8.00 to 9.00 am, and then the

rounds, first on the solid tumor ward and then at the Lymphoma treatment centre.

He then would drive home for lunch, and spend the afternoon in the laboratory. It was a well-furnished laboratory at first but was later difficult to maintain because it lacked basic sup-plies like liquid Nitrogen and dry ice. It closed in 1975.

In the afternoons, Dr. Olweny would pick up his children from Nakasero Primary School to retire home. He repeated the first half of this routine on Saturdays and Sundays every week. Until one day, that schedule was interrupted.

He was summoned to the government office in Nakasero for questioning. “Why are you selling Uganda’s cancer drugs to Nairobi,” a soldier asked. Could he be supplying anti-government agents with drugs? One staff member for UCI was detained.

For three hours he tried to explain to the sol-diers about a research study UCI was conduct-ing in partnership with Nairobi University. At the time, Uganda had chemotherapy drugs- that treat and kill cancer cells-, while Nairobi had radiotherapy facilities. This way clinical trials on how to treat endemic Kaposi sarcoma were done.

The trials involved sending Ugandan children to Nairobi for radiotherapy in exchange for drugs from Uganda. On a weekly basis, one staff member from UCI (who was arrested but later released) would go to the post office to send drugs to Nairobi.

Unlike Mulago Hospital, which sometimes did not even have any Aspirin, UCI had a constant supply of drugs to treat cancer. Its budget had been fully funded by the US-based National Cancer Institute (NCI) until 1975. Later, it was fully funded with endorsement by the Ministry of Health.

The ready supply of expensive drugs presented an opportunity. “We were trying drugs, we would start with one drug and then compare it with two or three,” said Dr. Olweny.

With Burkitt Lymphoma –an aggressive

The Health Digest6

lymphoma that occurs most often in children- a combina-tion of the three drugs worked best. The same combina-tion worked better for Ka-posi Sarcoma, a type of cancer characterized by the abnormal growth of blood vessels that develop into skin lesions or oc-cur internally.

But for liver cancer, none of the combinations worked as well as the doxorubicin alone, which first became available in 1975 and remains the main stay of treatment of liver cancer today.

“We saw tumors shrink. That was very unusual. They had tried everything but nothing worked,” said Dr. Olweny. UCI had to present its proposal

to a local research committee, which invari-ably could ask if it had patients’ consent. That proved to be a challenge. Unlike today, many patients could not read and write. But after getting simplified with elaborate explanations, enough patients gave their approval with their fingerprints.

Making a Global MarkAfter intensive work with Prof. Kyalwazi and armed with pictures of liver scans to show tumors of patients shrinking, Dr. Olweny traveled to Brussels to present the first paper on the treatment of liver cancer using doxoru-bicin. It caused a storm the world over, since nobody knew that this disease could be treated.

In the next big conference he attended, held by the American Society of Clinical Oncology in New Orleans in 1996, a presenter disputed whether UCI had actually successfully done research on liver cancer treatment. In a break out session attended by about 600 people, Dr. Olweny sat at the back and listened. He then walked to the front and introduced himself.

“I had evidence, showed them pictures of liver scans which showed (patients) before and after (treatment), and assured them that we were

able to make diagnosis of liver cancer because we had excellent pathologists at the time,” he said laughing away. Denis Wright and Michael Hut were pathologists working at Mulago then and played a critical role in diagnosis and research.

Dr. Olweny also contributed to the formation of the Essential drug list for cancer in use all over the world. (A second, expanded list has since been developed.)

Why UCI managed to Excel Apart from treating all patients, UCI followed up with every one of its patients. There were no mobile phones then, but nevertheless the institute traced every patient within a month of not showing up.

Secondly, UCI mixed its own medicines. That could be time-consuming, but Prof. Olweny trained oncology nurses and brought on board medical students to do the job, freeing up most of his time.

Some of the staff excelled. Philomena Na-kawunde (RIP), a chemotherapy nurse, knew every patient by name, where they came from, their treatment regimens, when they last came in and more.

Nakawunde was later to pick calls from Dr. Klein and Dr. Ziegler who had read in News-week that President Amin had wanted to change the name of Makerere to Amin Univer-sity and a number of scientists, including Dr. Olweny, had opposed it.

The publication wrote that as a result, his body had been found lying in a Kampala street. In his own autobiography yet to be published, this story goes under the heading ‘dead but still answering telephone calls’ because he was on duty and talked to Dr. Klein the day the story was published.

“I had dedicated staff. We had to train the nurses to mix the medicine and give the treat-ment, which freed a lot of our time. The medi-cal students were in charge, but they would call on me anytime day or night. They all did a wonderful job,” said Dr. Olweny with a wide smile at his home in Uganda Martyrs Univer-

The Health Digest 7sity Nkozi where he is a Professor of Medicine and Vice Chancellor at Uganda Martyrs Univer-sity.

“It is the ability to delegate that helped me get work done; the medical students helped me run the wards and the nurses helped take care of the patients.”

Some of the medical students were Dr. Alex Coutinho the executive director of the Infec-tious Diseases Institute of Makerere Univer-sity in Uganda, Dr. David Serwadda a lead-ing researcher in the epidemiology of HIV/AIDS in sub-Saharan Africa and once a dean of Makerere University of School of Public Health which was later elevated to the School of Makerere University College of Health Sciences (MUCHS).

Dr. Edward Katongole Mbidde the director Uganda Virus Research Institute (UVRI) and once a director of UCI as well as Dr. James Sekajugo the principal medical officer in charge of non- communicable diseases, at the Ministry of Health. All these medical students went on to excel and are now at the helm of Uganda’s health sector. They got exposure, prestige and real clinical practice.

UCI maintained a very high standard of work. During those years at least four or five articles were published every year in high-impact jour-nals. The boys worked dedicatedly even on Saturday and Sunday even though Dr. Olweny was the only doctor on call.

Is Cancer a disease for the poor?Cancer is not a disease for the poor, Prof Olwe-ny asserts. After the age of 5, the leading causes of death are the same the world over. Whether you are in New York or Kampala, they are heart disease, accidents and cancer.

Actually many people say the opposite – that cancer is a disease of the privileged. In reality, the only difference between how the disease af-fects rich and poor is that for the poor it often is either diagnosed too late or not at all.

Cancer affects the very young, the immunity has

not matured or the very old, the immunity has waned.

Most of the cancers in this part of the world are due to infections and can be prevented mostly through vaccination, according to Prof Olweny. Born in 1944, he now wishes that lay people could spearhead advocacy to make politicians understand cancer. In this, he says, the media should play a leading role in this.

“I would like the lay people to advocate for this disease. We are paying a lot of attention to infec-tious diseases, and yet cancer is the most com-mon cause of death. Cancer kills more people after the age of 5 than malaria”.

Advocacy role is very crucial. We must have more people advocate for cancer. For instance why has it taken us long to have an elaborate radiation therapy facility?

He wants to identify centres of excellence outside of Mulago – Lacor, Mbale, and Mbarara hospitals, for instance – and make sure that each of those centres has a cancer Register and has cancer essential drugs.

“Each centre will focus on an area that makes them unique,” he explains. For instance, Nsam-bya hospital has added a cancer ward, which he says should concentrate on cancers of the cervix and breast. “It is on our minds to decentralize and leave radiation at Mulago because it needs certain expertise,” he says

In Dr. Olweny’s opinion, the headquarters for regional cancer control programmes should be in Uganda since it has a cancer register and facilities, know-how, and people who are willing to do the job – like Tomusange who followed up all the pa-tients, the late Nakawunde bless her soul and many oth-er Ugandans at the Uganda Cancer Institute now.

The Health Digest8

The number of people newly diag-•nosed with breast cancer in Uganda has doubled over the past thirty years.The age group commonly affected is •a decade younger that’s 35-45years in Uganda compared to in the U.S.A 40-56 years. Morbidity and mortality is high with very poor five year over-all survivals of only 46% compared to the US data of over 80%. The body has mechanisms to •convert fat into estrogen hormones which then increase the breast can-cer risk.Research indicates that eating foods •with high cholesterol levels increase the risk of cancer.Although about 1% of men get breast •cancer too, women’s breast cells are constantly changing and grow-ing, mainly due to the activity of the female hormones estrogen and pro-gesterone. This activity puts them at much greater risks for breast cancer.In Uganda the youngest recorded pa-•tient diagnosed with breast cancer was about 16 years old.In the 1940s to 1960s mothers were •encouraged to take a medication called diethylstilbestrol (DES) to prevent miscarriages; research has shown an increased risk of breast cancer among women whose moth-ers took DES during pregnancy.Mammography is effective in screen-•ing women above age 50, and less sensitive in women below age 50.Breast eczema contributes 2-3% of •all breast cancers.40% of patients with Paget’s disease •will present with a breast mass.Because people with Paget disease •of the nipple also have underlying breast cancer, physical examina-tion and mammography (x-ray of the breast) are used to make the diagno-sis complete.Eight out of ten breast lumps are •benign, or not cancerous.Each year it’s estimated that approxi-•mately 1700 men are diagnosed with breast cancer and 450 will die.Men can develop breast cancer, but •this disease is about 100 times mire common among women than men.80% of women who are diagnosed •with breast cancer and who don’t have metastasis (spread of cancer) will survive at least 5 years beyond their diagnosis, and many live even longer than that.

Fact File Breast Cancer

In the obstetrics and gynaecology ward of St Mary’s Hospital La-cor in northern Uganda’s Gulu District, Apilli Kilara lies on the floor under a blood-stained sheet, staring at the ceiling.

Kilara, 43, and the mother of seven children, is in the advanced stages of cervical cancer.

“I started experiencing funny itching in my private parts after my fifth delivery in 2007. In November 2011 when I delivered my seventh child, I began noticing an on-and-off sharp pain in my pelvis with sudden bleeding in between my periods,” she told IRIN. “The pain and bleeding didn’t stop, that’s when I started imagining something was wrong with me.”

If Kilara had sought medical help when her symptoms first start-ed, she could have been treated successfully, but she knew noth-ing of cervical cancer at the time. As it is, the doctors fear she may not live much longer.

Lying next to her is another patient diagnosed with cervical can-cer; Akello* is 39, and when her symptoms started, she thought witchcraft was behind them, and sought treatment from a local healer.

“I had been visiting a traditional herbalist for treatment in vain, that is what women suffering similar ailments in my village do,” she said.

Adopted from IRIN

Compilled by Michelle Nabukeera

CERVICAL CANCER A silent killer of Ugandan Women

9The Health Digest

The risk of getting breast cancer •increases by 4% between ages of 40-59 and between the ages of 60-79, the risk is 7%.The first Ugandan to engage in oncol-•ogy training a broad was Dr. Charles C. Olweny in the US in the early 1970s.Cancer registration has been in op-•eration for close to sixty years mak-ing Uganda the only country in Africa with systematic cancer data on going for over half a century.The establishment of the Uganda •cancer institute in 1967 was as a result of the collaboration of the na-tional cancer institute of the United States with Makerere university medi-cal school.There are currently more than 35000 •cases of cancer per year in Uganda, of which 2200 are new cases, and 2000 die leaving only 2000 survivors of the newly diagnosed case every year.On average cancer treatment costs •about USD1500 for drugs alone (per capita income of an average Ugan-dan is USD 320) there is no alterna-tive funding mechanism in the coun-try.Cancer is the worst face of inequity •in health care access since the most affected are vulnerable groups espe-cially the children and women from rural areas. On the contrary, sizable elite members of the population are treated for cancer abroad at a very high cost.Internationally, Uganda is already a •signatory to the world health assem-bly declarations on cancer and has rectified the frame work convention on tobacco; it must therefore be seen to implement agreements by tak-ing steps towards national cancer control.Counselors have found that several •psychotherapies to reduce depres-sive symptoms in cancer patients are associated with longer survival time and reduced psychiatric symptomol-ogy.Just like women the life time risk of •men developing breast cancer in-creases with age, the only difference is older medium age of 67years. Without the probiotics, the immune •system would be left to clean the body alone, causing a work overload and probably not as thorough, thus the probiotics are good because they help the immune system to keep tox-ins out of or intestines.

Fact File Breast Cancer

Cervical cancer is the most common form of cancer affecting Ugandan women, according to the UN World Health Organiza-tion, which reports that every year, 3,577 women are diagnosed with cervical cancer and 2,464 die from the disease. By compari-son, 1,100 women die of breast cancer every year, according to the Uganda Women’s Health Initiative (UWHI). To put this figure into further context, 2,594 people in Uganda died in road accidents in 2010.

About 33.6 percent of women in the general population are esti-mated to harbour cervical human papillomavirus infection - the main cause of cervical cancer - at any given time.

Limited treatment capacityAccording to Pontius Bayo, head of obstetrics and gynaecology at St Mary’s Hospital Lacor, the hospital is limited in its ability to treat them. “We can’t treat cervical cancer in its advance stage. We refer such cases to the Uganda Cancer Institute at Mulago Hospital in Kampala for further management,” he said.Statistics obtained from St Mary’s Hospital Lacor indicate that 2 percent of all admissions at the maternity ward present with cer-vical cancer, most in advance stages; 11percent of deaths in the maternity ward are the result of cervical cancer.

Few women in rural Uganda can afford the cost of treatment at Mulago Hospital, the country’s largest referral facility; many can’t even raise the cost of transport to the capital.

With little information on the disease available to women, health workers worry that it will continue to go undiagnosed and untreat-ed. “It’s a concern in a situation where there is no adequate out-reach programme for screening and treating the disease in its early stages,” said Bayo.

There is little information available on screening for cervical can-cer, but a 2006 study conducted on medical workers at Mulago Hospital found that 19 percent of them had never been screened for the disease, and 78 percent said they never asked patients if they had been screened or referred for screening.

Uganda Cancer Institute director Jackson Orem said a lack of fund-ing was constraining the government’s efforts to fight the disease. “Hospitals are constrained with inadequate facilities and trained staff to treat patients,” he said.

UWHI, which conducts cervical cancer screening around the coun-try, says even major referral hospitals do not offer regular screen-ing. “There is very high need for women and their husbands to be sensitized so that they know the symptoms of cervical cancer,” said UWHI’s Tom Otim, adding that many women mistook early symptoms of the disease - such as bleeding in between menstrual periods - as normal occurrences.

“It’s a neglected area that requires attention,” he said.(*not her real name)

www.irin.com

The Health Digest10

Rwanda could become a study case for Africa in cer-vical cancer vaccine effectiveness and equity, as it be-comes the world’s first low-income country to attain universal coverage for the life saving vaccine.

Results of a national Human papillomavirus (HPV) vaccination programme done in 2011 and published last month in the World Health Organisation Bulletin show successful roll-out and lessons that could moti-vate other countries to adopt the HPV vaccine during their child health immunization days.

“We are encouraged by the promising initial results of the HPV vaccination programme in Rwanda, which has attained 93 percent coverage after the first three-dose course of vaccination,” said the WHO bulletin.

“The example should motivate other countries to ex-pand their vaccination programmes to include the HPV vaccine, with due customization according to their epidemiological, economic, political, and health system contexts,” says the Principal Investigator of the study Agnes Binagwaho.

Rwanda becomes the first country to have a national HPV immunization programme in sub-Saharan Africa, other countries are doing it at a small scale mainly be-cause of the high costs of the HPV vaccine, which can cost up to $450.

Rwanda’s HPV universal vaccine coverage success is attributed to the use of a multi-sector approach involv-ing the health and education sectors, with a designed school based strategy as well as community involve-ment in identifying girls absent and not enrolled in school as well as HIV and health workers engaged in cancer care.

Rwanda had the political will to support the pro-gramme. The first lady, Janet Kagame became an advo-cate and icon in a countrywide sensitization campaign undertaken prior to vaccine rollout as she engaged with parents and children informing them about the new vaccine.

Religious leaders, local government officials, health workers as well as teachers were also involved in the crusade as a massive mass media campaign was carried out through all outlets.

Parents and guardians were encouraged to accompany their daughters to school on the first day of adminis-tering the first of the three doses. If there was no show by the parent or guardian the girl did not receive the vaccine.

According to the WHO Bulletin, Rwanda’s 60 000 com-munity health workers were mobilized for active trac-ing of girls enrolled in primary grade six or 12-15 years but absent on a vaccination day, as well as the small number of girls who were 12 years old but not enrolled in school. After being identified by community health workers, girls from both groups were vaccinated at the local health centre.

Mrs. Kagame later held negotiations with Merck of-ficials to partner with Rwanda. to offer at no fee the Gardasil HPV vaccine for the first three years of the HPV vaccination programme.

The Gardasil vaccine, which would otherwise cost each girl $450 was given for free to all eligible girls after Mrs. Kagame secured in December 2010, a memorandum of understanding (MOU) in which, 2 million doses were donated by Merck the vaccine manufacturer for the three year programme and promised concessional prices for future doses.

Merck has since promised to lower the price to $5 per dose for GAVI Alliance eligible countries including all the states in the East African region in its immuniza-tion package but is yet to implement it.

Rwanda has also under the public-private community partnership also adopted a National Strategic Plan for the Prevention, Control, and Management of Cervical Lesions and Cancer, which offers screening and vacci-nation programmes for women aged 35 and 45 years.

Cervical cancer is the most common cancer among women in Rwanda. Studies from the Rwanda’s ministry of Health show that in 2010, they diagnosed 986 cases of cervical cancer and 678 women died from it.

But largely, Rwanda is also unique. For instance 98 per-cent Rwanda girls attend primary school and the girls targeted where aged the median age of sexual debut is 20.7 years.

By Esther Nakkazi

Rwanda: A CERVICAL CANCER Model for Africa

Freelance Science reporter <estanakkazi@gmail.com>

11The Health Digest

Here’s what we do know: oral contracep-tives — better known as the pill — may im-pact a woman’s chances of developing breast and gynecologic cancers. In some cases, that means a bigger chance of cancer. In others, it means protection against cancer.

The reason? Most oral contraceptives con-tain man-made versions of the female sex hormones estrogen and progesterone. And, taking the pill changes your hormone levels, which can trigger — or, in some cases, pre-vent — some female cancers.

Below, I’ve broken down the pill’s protective benefits and risks. Protective perks include lower ovarian and endometrial cancer risks

Taking the pill may help cut your risk of ovar-ian cancer and endometrial (uterine) cancer. That’s probably because women who take the pill ovulate, or release eggs from the ovary, fewer times than women who don’t take the pill. The more times you ovulate, the more hormones you’re exposed to.

The longer you take the pill, the greater the benefits. In fact, taking the pill for five years or longer may cut your ovarian cancer risk in half. That protection may last up to 25 years after you stop taking the pill, says the Na-tional Cancer Institute. Studies even suggest tional Cancer Institute. Studies even suggest the pill may protect against ovarian cancer in the pill may protect against ovarian cancer in women with BRCA genetic mutations.women with BRCA genetic mutations.

And, that’s not the only good news. Taking And, that’s not the only good news. Taking the pill for at least four years may cut your the pill for at least four years may cut your endometrial cancer risk in half if you’re at endometrial cancer risk in half if you’re at average risk of the disease. Even better: this average risk of the disease. Even better: this protection lasts for 10 years after you stop protection lasts for 10 years after you stop taking the pill.taking the pill.

Breast and cervical cancer risks are higher — Breast and cervical cancer risks are higher — but just slightly but just slightly Have you been on the pill for several years? Have you been on the pill for several years? It may slightly raise your breast and cervical It may slightly raise your breast and cervical cancer risks.

But this slight increase is only temporary. And, your risk returns to normal about five years after you go off the pill.

Plus, if you’re in your teens, 20s, 30s or early 40s (the ages when most women take the pill), your cancer risk is low. So, that poten-tial increased risk from taking the pill is even smaller for you.

Do you have a family history of breast can-cer? Take note: research shows that taking the pill doesn’t increase breast cancer risk much for women with BRCA genetic mutations or a family history of the disease.

Don’t lose sight of bigger cancer risk factors. The pill isn’t the only thing that puts you at risk for cancer. And, it’s certainly not the big-gest thing.

For instance, more cases of cervical cancer are caused by the sexually transmitted human papillomavirus (HPV) than by taking the pill. So, be sure to protect yourself from HPV, get tested for HPV, and get vaccinated against HPV if you’re eligible.

And, aging, being overweight, along with your reproductive history and family history may also put you at higher risk for some gy-necological cancers.

Consider other health risks when choosing birth control Talk to your doctor and weigh all of the pros and cons before deciding if the pill is right for you.

After all, the pill may put some women at in-creased risk for other health problems, such as blood clots, heart disease and stroke. And, some women can’t remember to take a pill every day.

So, don’t pick your birth control based on the cancer risks alone. The best birth control method is the one that works best for your lifestyle and your health concerns.

Does your birth control

pill put you at risk for can-

cer? Or, does it actually pro-

tect you from the disease?

Recent head-lines might

have you wondering.

Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and Birth control and CANCER: What you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should knowWhat you should know

The Health Digest12

By Shifa Mwesigye

I had been told about Timothy Lwanga’s family’s misfortune with prostate cancer. But I was not prepared for the reply on the other end of the line when I called him to ask for an interview.

“I am not fine, I have just buried my father this evening,” Timothy said. His father had suc-cumbed to a cancer that he had been fighting for the past seven years since he found out in 2006. Timothy explains that when his father, Fred Lwanga walked into the doctor’s clinic complain-ing of pain when passing urine, he did not antici-pate that he would he given the shocking news of cancer.

The family was devastated; his was in the third stage. He was given two options, to remove the prostate or go for chemotherapy. He opted for the surgery and in Nairobi. Mr Lwanga’s prostate was removed.

When he was sent home, Lwanga was given spe-cific instructions to continue with chemotherapy to kill off any cancerous cells that would have stayed lingering in the body. “He did not follow the advice and did not go for chemotherapy. We don’t know why probably he feared its side effects,” Timothy a Music Director at Sanyu FM says sadly.

His life after surgery continued normally, there was nothing troubling apart of some mild head-aches and backaches. All through 2008 and 2009, Fred was feeling very fine.

Then in late 2009, he started feeling pain while passing urine. Fred would lose his memory for days, get back pains and then eventually he start-ed feeling excruciating pain all over his body.

“It was terrible seeing my dad go through so much pain,” Timothy explains. Fortunately, all the while his wife was by his side, escorting him to attend treatments, holding his hand, talking to him and just loving him. When a doctor subjected him to a Prostate-Spe-cific Antigen (PSA) test, they found that his PSA levels had shot to an all time high of 400. Normal levels for a human being stop below 4. “We expected him to die in a few months. We started him on treatment and from them until he died he has been fighting. The treatment gave him three years of his life,” Timothy says.

Fred who was a company chartered secretary died on July 2, 2012. He was 79 years old. He left four children and a wife.

“He knew he had found the cancer and removed it, what he didn’t do was to continue with the che-motherapy because all those years he thought he was fine. He didn’t know that something worse than the affected prostate had stayed,” Timothy, the first born of the family says.

Dr Fred Okuku an oncologist at the Uganda Can-cer Institute says that what fails the fight against prostate cancer in men in Uganda is the igno-rance of the disease. Many people do not even know about their prostate, they do not know what symptoms to look out for and where to go

Prostate Cancer Stealthily killing off Ugandan men

13The Health Digest

for check-up.

The first aggressive campaign that brought prostate can-cer into the eyes of many Ugandans was the November Campaign done by Victoria University last year. That campaign which raised some Shs 27 million for research into prostate cancer opened the eyes of many men to go and have a check up. “It is not that prostate cancer is not a big thing but in Uganda our priorities are not right. You cannot expect Uganda to put money into health care when we don’t have good roads,” Dr Okuku says. In Uganda the inci-dence rate of prostate cancer is 45/100.000 people.

Public needs to knowThe prostate is a tiny organ hidden beneath the urinary bladder. It is shaped like an apple, though smaller in size. The urethra and ejaculatory duct pass through it. Its function is to neutralize the acidity of both seminal and vaginal fluids. It grows to stationary size by age 20yrs and remains so till 50yrs. This is the part that cancer affects hence the name prostate cancer. It is the second commonest cancer among males in Uganda according to Dr Okuku. A person cannot check selves; only a doc-tor can give an examination through the rectum to feel any growth.

Prostate cancer is more common in Africans and less common in Asians, Americans or Europeans because of the difference in genetic makeup. Cancer of the prostate is usually slow growing and most men will die with and not from prostate cancer.

“It is not that it is affecting more many today but the awareness is increased and people are coming for check-ups. They are not staying at home dying of a strange disease which they treat with witchcraft,” Dr Okuku says.

Even medical workers are becoming more familiar with it and with available ultra sound scans in major health centres, it is easier to detect today. A man will state developing the cancer between 40 and 45 years. When the prostate becomes enlarged, it blocks the urethra and one cannot pass urine normally. When the bladder is blocked and urine does not come out, it gets infected with bacteria and causes pain. The person will pass urine frequently.

One of the risks factors of getting prostate cancer is age because as a man grows older, the chances are high-er. The second risk factor is family history where if a father had prostate cancer chances are high that the son will get it.

Other risk factors are obesity, sedentary life style of be-ing docile, no exercise. Diets rich in red meats also in-crease chances of prostate cancer.

In the late stages of the cancer, a man will start passing bloody urine; feel pain in the bones, compression of the spinal cord, recital dysfunction and weakness in the lower limbs.

Dr Okuku says that there are many treatments but when the cancer is detected early, a surgery can be done where the prostate is removed. This comes with complications like urinary inconsistency.

The second treatment is radiotherapy using random seeds or external beam or brachytherapy.

“In the late stages all we do is to remove the testis by castration. This is done because the cancer is driven by male hormones so when you shut down the testis or remove it, the cancer becomes less aggressive,” Dr Okuku explains. When it is removed, the man loses the ability of func-tioning like a male. He becomes impotent, sometimes breasts grow and he becomes fat. The bones become weaker, lipids go up and he could develop hyperten-sion.

To prevent prostate cancer, one needs to go for a check-up at 40 years of age especially if they have a family history of the cancer. For other men, when they reach 50 years, they should go for a checkup. There is no vac-cine for this cancer because it is not a disease caused by an infection. Screening is offered at the cancer institute free of charge. “We have prominent men in this country suffering from this cancer. Someone needs to stand up and spearhead a campaign to encourage men to check. We have facilities to detect and treat but when it is too late then it will not cure and one will die,” Dr Okuku says.

According to a paper published in the British Journal of Cancer, the prostate cancer survival rate in Uganda stands at 47% compared to 98% in America because there, men go early for checkup. Men in Uganda die just about 5 years after detection.

Timothy Lwanga says that having watched his father go through the pain and cost of treatment, he is very cau-tious of his life now.

To treat his dad, one particular daily dose of medication cost about Shs 25,000 per tablet. This is not to mention all other cocktails of drugs he was put on including pain medications. In a month, the family spent some Shs 5 million to make Fred Lwanga’s life comfortable.

“Every year I have to take a PSA test and any slight ill-ness I get, I see a doctor because I have learnt not to take chances,” Timothy says. Not to blame a man who has lost four relatives to cancer.

Shifa Mwesigye < shifamwesigye@yahoo.com > A reporter at the Observer newspaper.

The Health Digest14

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UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseTobacco UseBy Halima AthumaniBy Halima Athumani

If you have seen a cigarette pack, you probably know that smoking is harmful to your health. But that’s not entirely true. What that pack didn’t tell you is that smoking is not only bad for your health; it’s also equally dangerous to the health of everyone else that inhales the cigarette smoke, as the latest statistics clearly show. Six million people die every year worldwide as a result of tobacco use, 13,500 in Uganda, according to the Ministry of Health. 600,000 of these are passive smokers.

That’s why the centre for Tobacco Control in Af-That’s why the centre for Tobacco Control in Af-That’s why the centre for Tobacco Control in Africa (CTCA) was established in 2011, to reduce consumption of tobacco products in five Afri-can countries. These are Uganda, Kenya, South Africa, Angola and Mauritania.

Dr. Sheila Ndyanabangi, the Principal Medical Officer in charge of Mental Health at the Min-istry of Health says the centre supports govern-ments in implementing evidence-based tobacco control strategies in Africa. It is funded under a three year project from 2011 to 2014 worth USD3.4M (about Ushs. 8.5Bn) and is hosted in Uganda by the School of Public Health at Mak-erere University.

“It (CTCA) will also increase and support re-search which will be formatted in a manner that will be understood by policy makers locally,” Dr. Ndyanabangi added.

The centre’s main focus areas include ensuring a smoke-free environment, raising tax for tobacco products and placing graphic health warnings on cigarette packs. They also want to enforce a ban on advertising, promotion and sponsorship by tobacco companies as well as encourage alterna-tive livelihoods for the tobacco farmers.

Ahmed Ogwer the WHO Regional Advisor To-bacco control in Africa emphasizes that the to-bacco industry is not a stakeholder as far as public health is con-cerned. He adds that they do not recognize the corporate social responsibility of the tobacco in-dustry.

Tobacco control experts claim tobacco and cigarettes do not contribute to the economy of Uganda, as the industry claims. Dr Possy Mugye-nyi, the Manager of CTCA says the revenue that the tobacco industry generates for the country is offset by the public health costs resulting from the tobacco-related diseases such as cancer.

Dr. Ndyanabangi also notes that the major chal-lenge Uganda is facing is that tobacco is a glob-al industry practicing cross border trade. This makes it difficult to police not only farmers but also other countries that are benefiting through the tax paid by the industry.

Smoking is said to cause about 90% of all lung cancer deaths in men and 80% in women. Smok-ing has also been linked to several other types of cancer including cancer of the bladder, cervix, oesophagus, kidney, larynx, lung, mouth, throat, stomach, uterus and acute myeloid leukemia. Research also shows that non-smokers exposed to second hand smoke are inhaling many of the same cancer causing substances and poisons as smokers. Smoking during pregnancy can increase the risk of miscarriage, stillborn or pre-mature infants, and infants is associated with low birth weight and an increased risk of Sudden Infant Death Syndrome.

Halima Athuman < email:haliasijo@yahoo.com > Reporter with the Uganda Radio Network

15 15The Health Digest

It began with a slight stomach ache in June 2011. That went away, but resurfaced the next month with a sudden, excruciating pain. Ambassador Vasta Rwankote, Uganda’s Chief of Protocol, went to the doctor who promptly sent her for a scan, and then advised her to travel right away to India for an operation, believing that the prob-lem had not developed into full-blown cancer. The operation was performed in September.

Rwankote returned to Uganda in the second week of October. By the time her plane touched down at Entebbe Airport, she was vomiting. But she thought that was to be expected given that she was on preventive chemotherapy. Four days later, her health badly deteriorated until she suc-cumbed to the deadly cancer on November 3. She was 60 years old when she died

Her workmates say that before Rwankote trav-elled to India, one would hardly know she was sick because she was energetic. Like most victims of Pancreatic cancer, she had ignored the first signs because they were so mild it seemed hard to believe they could be a symptom of a lethal illness. A few months after Rwankote’s death, the retired Bishop of Madi and West Nile, Dr. Enoch Lee Drati also died of pancreatic cancer.

Pancreatic cancer is referred to as the silent killer because by the time symptoms are felt, the can-cer has spread. The cancer grows for sometime before it causes pressure in the abdomen, pain or other symptoms. The initial symptoms also may be vague, and thus often are ignored. That’s why the disease often spreads without alarming the patient until it is too late. These early symptoms include dark urine and clay-coloured stools, fa-tigue and weakness, jaundice (the yellowing of the skin, mucous membranes and eyes), loss of appetite and weight loss, nausea and vomiting, and pain or discomfort in the upper part of the abdomen. Other symptoms include back pain, blood clots, diarrhoea and indigestion. Doctors

say that early detection and commencement of treatment can save the sufferer, but in most cas-es medical intervention is sought too late.

Cases IncreasingDoctors say that gastrointestinal cancer is in-creasing in Uganda. In addition to pancreating cancer, these cancers include: gastrointestinal tumours and cancer of the liver, oesophagus, stomach, gallbladder, colon, rectum and anus.

Researchers attribute the increase in gastroin-testinal cancers to changes in lifestyle, habits like smoking, excessive alcohol consumption and poor diet, but the exact cause of pancreatic cancer has not been identified yet. Health ex-perts, however say that it is common in people with diabetes, people who have suffered from inflammation of the pancreas for a long time and among smokers.

95% of the people diagnosed with the cancer do not survive for more than five years. The cancer is slightly more common in women than in men and the risk increases with age, experts say. A

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The Health Digest16

Eight-year-old, Nathan, developed a toothache. Her mother took him to the clinic for tooth extraction. Nathan’s mother says even after the tooth removal the boy could neither eat nor sleep. He was screaming and crying in agony every other day as the jaw grew bigger and bigger. Eventually his mother boarded a bus from Mubende district heading to Kampala. At the Uganda Cancer institute (UCI) Mulago, Nathan was subjected to a series of medical examinations and laboratory tests. The results from the laboratory tests showed that Nathan had cancer that was quickly spreading to other parts of his body.

According to Dr. Abrahams Omoding, an oncologist at the Uganda Cancer Institute, Nathan was suffering from Burkitt’s lymphoma, a cancer that commonly involves lymph nodes and the lymphatic system. In Africa where this cancer is endemic, it mostly involves the jaw in 80-90% of all cases. Mainly affecting children between the ages of 7-14, this cancer is more common in boys than girls. In the western world, the cancer usually presents with the swelling of the abdomen.

“During the period of tooth development young children are either playing or eating dirty things or soil and eventually this may be the time when a child actually becomes infected with the causative Epstein-Barr virus,” Dr Omoding explains.

In addition, chronic malarial infections are still being studied in the causation of Burkitt’s lymphoma among children. This is because when a patient has repeated attacks of malaria, it tends to over-stimulate the child’s immune system particularly the type of cells called B cells that are involved in immune functioning. The latter tends to over grow in numbers and over populate lymph nodes consequently leading to lymphoma development.

He appeals to parents to have regular check-ups of their children’s teeth by a qualified dentist. Any toothache developed by a child should not be taken lightly as this could be a red flag.

First discovered by Denis Burkitt, a British surgeon at Makerere Medical School during the 1950s and 60, the scientist noted that majority of

Your Child’s Toothache Could be a Cancer too.

By Rebecca Birungi

small number of cases are related to genetic syn-dromes that are passed down through families.

The pancreas is an organ located behind the stom-ach. It releases enzymes into the intestines that help the body absorb foods, especially fats. The hormones insulin and glucagon, which help the body control blood sugar levels, are made in spe-cial cells in the pancreas.

Treatment of pancreatic cancer includes surgery, chemotherapy and radiotherapy. According to the Mulago Hospital Deputy Director, Dr. Isaac Eza-ti, only one machine has been available at the facil-ity for detection of gastrointestinal cancers since 1995. He says the hospital needs at least two more machines to handle the increasing number of pa-tients with gastrointestinal cancers. Some patients do not bother to return for check up when they come once and find the machine down.

PreventionPreventive measures include avoiding smoking, eating a diet high in fruits, vegetables and whole grains and exercising regularly. According to the head of disease surveillance in Uganda, Dr. Issa Makumbi, although the incidence of pancreatic cancer is increasing, many people die of this dis-ease unnoticed because other cancers and non-communicable diseases often gt more attention.

“We have been concentrating so much on com-municable diseases, yet the non-communicable diseases are slowly taking centre stage. We need to study the conditions so that we can draw up a programme for fighting them,” Dr. Issa Makumbi says.

Anne Mugisa <mugisaanne@gmail.com> Senior Journalist with The New Vision

17The Health Digest

Ugandan children were presenting with a unique swelling of the jaw. Further studies established that this swelling was a lymphoma of the jaw.

Symptoms

The symptoms for the cancer may include a toothache, a swollen jaw, swelling of lymph nodes, rise in temperature (fever), and loss of body weight among others. When the disease spreads to other parts of the body especially the brain and the spine, children will present with failure to walk or stand, and or failure to pass urine and stool.

He adds that Burkitt’s lymphoma commonly begins as a toothache among children between the ages of 7-14. The toothache more often than not ends with extraction. After the tooth extraction, the child’s jaw continues to grow big and bigger, becoming a huge mass that may bleed and become infected with offensive foul smell. The tumor then disables the child from feeding.

Burkitt lymphoma is an infection related cancer common in equatorial Africa in what is called the Burkitt Belt which stretches from Kenya, Somalia, Tanzania, Mozambique, Uganda, and DR Congo up to the western coast of the African continent.

Treatment

Omoding further says most children seen at the UCI are referred from rural areas. The eastern, central and northwestern Uganda are common regions where children come from. It is usually

children from poor families that are largely affected.

For treatment to be started, a child must have a confirmation of cancer diagnosis by a biopsy of the swelling that is then analyzed in a specialized laboratory. The treatment involves a holistic approach that begins with staging work up consisting of several tests in order to understand the extent of the disease

“All these investigations are very important to understanding the extent of the cancer. Secondly to determine the type of treatment to be used as well as the outcome of the patient,” Dr Omoding says.

Dr. Omoding explains that Burkitt lymphoma is a potentially curable cancer in early stages but 80-90% of the children are brought to the Uganda Cancer Institute when the cancer is in its advanced stage. Therefore the treatment given to these children is palliative, aimed at controlling symptoms and progression such that they have a better quality of life. A patient is in stage A when the tumor involves only one part of the jaw. Stage B the tumor may involve both jaws and other lymph nodes while stage C is when the tumor is in the abdomen and lastly stage D, the cancer has reached the brain, liver or lungs.

Rebecca Birungi <birungir@yahoo.com>. Health reporter with Mama F.M under the Uganda Media Women Association (UMWA)

Ugandan children were presenting with a unique children from poor families that are largely

The Health Digest18

By Josephine Tusingwire

HIV/AIDS patients with suppressed immune systems are at higher risk of many opportu-nistic infections including cancers. Some of the most common types of cancer associated with HIV may include cervical cancer, Kapo-si’s Sarcoma, and non-Hodgkin’s Lymphoma. Others are Hodgkin’s lymphoma, and angio-sarcoma, a type of cancer that begins in the lining of the blood vessels. People with HIV/AIDS may also develop anal cancer, liver can-cer, mouth cancer, throat cancer, lung cancer, testicular cancer, colorectal cancer and certain types of skin cancer among others.

HIV does not cause cancer, but only increases the risk of getting infected with cancer. Re-search shows that HIV positive women are five times more likely to be diagnosed with cervical cancer than negative women. When a woman’s immune system is severely dam-aged, and unfortunately that same woman harbours the Human Papilloma virus (HPV) that causes cervical cancer, cervical cancer will rapidly progress to an advanced stage. That’s why HIV positive women are advised to go for regular cancer screenings.

One of the most common cancers in children in East and Central Africa is Kaposi’s Sar-coma. Diagnosis is confirmed by biopsy of the lesion and histological examination. Re-searchers from the Fred Hutchinson Cancer Research Centre in the United States say the human herpes virus 8, is the primary cause of

Kaposi’s sarcoma. One of the signs of Ka-posi’s Sarcoma are skin lesions, which may be purple or brown, initially flat but later de-velop into nodules appearing as dark plaques. These can occur anywhere on the body. These symptoms may spread to other organs like the lungs, brain or the gastrointestinal tract.

In Non-Hodgkin lymphoma, cancer cells form in the lymphatic system and start to grow un-controllably due to the weakened immune sys-tem. HIV positive patients are said to be 70 times more likely to be diagnosed with these cancers.

TreatmentIn some cases, cancers in HIV positive people, particularly Kaposi’s sarcoma, may heal with the right HIV treatment and adherence, espe-cially if the treatment is started early.

“But most cancers are not diagnosed early mainly because of the challenges in develop-ing countries,” says Lawrence Ssegawa, a Clini-cian with Nurture Africa, an organization that provides treatment to HIV positive children in Nansana, Wakiso District. “Some of these challenges include lack of diagnosing gadgets, poor health facilities, lack of professionals, long distances to health facilities which directly im-pact on adherence and follow up, among other things.”

One form of treatment is to use Highly Active

HIV does not cause cancer, but only increases the risk of getting infected with cancer

Cancer with HIV

Antiretroviral Therapy (HAART). HAART is the name given to aggressive treatment regimens used to suppress HIV viral replication and the progres-sion of HIV disease. The cancer, especially when it is still in early stages, often regresses with the ini-tiation of HAART. When it has diffused, systemic chemotherapy is often required and anti-cancer drugs may then be given to the patient. However, it’s still not possible to get all HIV in-fected people to access antiretroviral therapy to reduce cancer infections. Only half of people liv-ing with HIV/AIDS that urgently need treatment are able to get it. According to the 2012 Uganda Health Demographic survey, an estimated 1.5 mil-lion Ugandans are living with HIV/AIDS. Of

these, only about 500,000 people are getting an-tiretroviral treatment. But in order to reduce cas-es of cancer among HIV positive people, Corey Casper, an associate researcher on Vaccines and Infectious Diseases calls for early treatment of HIV and AIDS and routine cancer screening in all clinics countrywide.

But it should be noted however that HIV nega-tive people are also at risk of cancer. Other factors may increase one’s risk of getting cancer includ-ing genetics, chronic medication, lifestyle, age and chronic diseases like ulcers.

Josephine Tusingwire <jktusingwire@yahoo.com> HIV/AIDS Advocate and Counseling Psychologist.

19The Health Digest

The Health Digest20

f you visit the Uganda Cancer Institute (UCI) on a Monday morning, you may be surprised by the

sheer number of patients lining up for consultations with senior oncologists. The parking lot is jammed with vehicles-some belong to the medical staff at the UCI, but many of the vehicles are driven by relatives of jajjas or children seeking medical care for what ap-pears to be a growing cancer epidemic in Uganda.

Evidence from data collected by the Kampala Cancer Registry suggests that cancer incidence is increasing in Kampala and in Uganda. For instance, prostate can-cer was a relatively rare disease in the 1960s, with an incidence rate of 3 to 6 cases per 100,000. According to data for 2002-2006, age standardized incidence rates for prostate cancer are now 39.6 per 100,000 men. A similar story can be told for breast cancer incidence. Breast cancer age-standardized incidence rates were 18 per 100,000 from the period of 1991-1995. From

2002-2006, age standardized incidence rates were 31 per 100,000.

It is unclear what is driving these increases in cancer incidence in the Kampala area, but researchers suggest that at least part of these increases can be attributed to urbanization, and the changes in diet, activity, and exposure to pollutants that accompany city life. At the same time, cancers that are usually considered endemic in east Africa, such as cancers of the cervix, liver and esophagus, continue to be serious problems.

What is being done to address this growing cancer burden? Returning to the Monday morning scene at the UCI, if you look up the hill past the outpatient center, where patients congregate and wait for their names to be called under a tent, you will see a concrete building in called under a tent, you will see a concrete building in

progress.

This will serve as a new public in-patient cancer center, with its own surgical theatres, laboratory spaces, and consultation areas. Within a year, the landscape of public cancer services in Uganda will be quite dif-ferent, thanks to this new building, and another one which will provide space for cancer research and training activities through a partnership with the Fred Hutchinson Cancer Center in Seattle, Washington, USA.

These recent events mark an opportunity for Ugandan These recent events mark an opportunity for Ugandan health journalists to report on the quickly changing health journalists to report on the quickly changing infrastructure of cancer care in Kampala, to ask ques-infrastructure of cancer care in Kampala, to ask ques-tions about how cancer services will be built for tions about how cancer services will be built for the rest of the country, to report on a num-the rest of the country, to report on a num-ber of new cancer research projects un-ber of new cancer research projects un-derway, and to ask why there is a growing derway, and to ask why there is a growing cancer epidemic in Uganda.

At the same time, journalists report-ing on cancer should know that they are writing the latest chapter in an over are writing the latest chapter in an over fifty year history of biomedical research fifty year history of biomedical research and care for cancer in Uganda. This is a unique history in sub-Saharan Af-rica, and one that continues to shape where cancer services and knowledge about cancer are created today. To provide about cancer are created today. To provide greater context for those reporting on cancer in greater context for those reporting on cancer in Uganda, the aim of this article is to provide some Uganda, the aim of this article is to provide some deeper historical context on the UCI, and cancer deeper historical context on the UCI, and cancer services more generally in Africa, since the services more generally in Africa, since the 1950s.

1950s: Establishing the Kampala Cancer 1950s: Establishing the Kampala Cancer Registry

In the 1950s, physician-academics at Makerere Medical College became increasingly concerned that their students increasingly concerned that their students

Uganda’s walk withBy Marissa Mika

I

21The Health Digest

not only learn about tropical illnesses and infectious diseases, but that they also be prepared for working with a host of non-communicable diseases, especially heart disease and cancer. At the same time, growing interest to document the geographical patterns and distributions of cancer in Africa led the British gov-ernment to invest in a population based cancer registry in Uganda.

A population based cancer registry is responsible for A population based cancer registry is responsible for recording all of the cancer cases in a set geographic recording all of the cancer cases in a set geographic region, which allows for calculating how many new region, which allows for calculating how many new cases of cancer are seen in that set population over cases of cancer are seen in that set population over a span of time. This number of new cases over a a span of time. This number of new cases over a period of time is usually called an incidence period of time is usually called an incidence

rate. A population based cancer registry is different rate. A population based cancer registry is different from a hospital based cancer registry, which records from a hospital based cancer registry, which records the cancer cases for that particular hospital, irrespec-the cancer cases for that particular hospital, irrespec-tive of whether or not that person permanently lives tive of whether or not that person permanently lives in the area.

The Kampala Cancer Registry works by recordThe Kampala Cancer Registry works by record-ing new cases of cancer that appear among those ing new cases of cancer that appear among those permanently living in Kyadando county and permanently living in Kyadando county and recording the data in the registry system. The recording the data in the registry system. The cancer registrar finds cases of cancer by reviewcancer registrar finds cases of cancer by review-ing patient charts, or being notified of a case. ing patient charts, or being notified of a case.

When the Kampala Cancer Registry first started, When the Kampala Cancer Registry first started, this was done manually on cards—today, the data is this was done manually on cards—today, the data is entered into a database and checked for duplicates. entered into a database and checked for duplicates.

The Kampala Cancer Registry has shaped much of The Kampala Cancer Registry has shaped much of what we know about the distribution of cancer in what we know about the distribution of cancer in Uganda and more generally sub-Saharan Africa for Uganda and more generally sub-Saharan Africa for the past fifty years. The data from the registry also the past fifty years. The data from the registry also provides a valuable tool for journalists to access provides a valuable tool for journalists to access information about the cancer burden in Uganda information about the cancer burden in Uganda

and the rest of Africa. To access Kampala and the rest of Africa. To access Kampala Cancer Registry data, you can visit the World Cancer Registry data, you can visit the World

Health Organization’s online database

at: http://ci5.iarc.fr/CI5i-ix/ci5i-ix.htm. Other recent publications from the Kampala Cancer Registry can be accessed through searching for “Kampala Cancer Reg-istry” at: http://www.ncbi.nlm.nih.gov/pubmed/. You can also schedule an interview with Professor Henry Wabinga in the Pathology department at Makerere, who has served as the head of the cancer registry since 1993.

1960s: Burkitt’s Lymphoma Research and the Found-ing of the UCI

In addition to documenting the incidence of cancer around Kampala, the late 1950s and early 1960s in Uganda also marked a growing interest in a tumor that was remarkably rare in Europe and the United States, but was the most common childhood cancer seen at Mulago. A surgeon named Denis Burkitt first became interested in this tumor both because of its over-

whelming visibility—the tumor usually manifests itself as an extreme swelling in the jaw—and because of the tumor’s inoperability. Chemotherapy, however, did an impressive job in shrinking tumors, with some children going into remission, suggesting that this tumor, which eventually became known as Burkitt’s lymphoma, was potentially curable with the right set of drugs.

American researchers at the National Cancer Institute (NCI) were also increasingly interested in the role of chemotherapy in managing and curing cancers. A partnership between the American NCI and Makerere Medical College’s Surgery department planned and established the UCI. In 1967, the Lymphoma Treat-ment Center opened, and in 1968, a ward dedicated to studying solid tumors like Kaposi’s sarcoma and liver cancers opened as well. The research units, two 20 bed wards that had been abandoned buildings at

Cancer

The Health Digest22

Old Mulago, focused on providing care for selected cancers and also conducting randomized controlled trials on chemotherapy dosages and combinations of drugs. Many medical students from America, the United Kingdom, and Uganda came and learned at the UCI. Many of the combinations of therapies that we now use for Burkitt’s lymphoma and other cancers came out of the research that was conducted at the UCI in the 1960s and 1970s.

1970s: Continuing Cancer Research Under Idi Amin

One of the most fascinating and surprising aspects of the history of cancer research and care in Uganda is that the UCI managed to stay open and viable during the 1970s. Much of this can be attributed to the ener-getic and passionate leadership of Professor Charles Olweny, who trained as an oncologist in the United States and returned to Kampala to run the Institute after it became clear that the expulsion of the Asians in 1972 also severely hindered the ability of American and British physicians to stay in Uganda.

A vibrant staff also kept the X-ray department open and running, research staff still conducted follow up visits with patients, and chemotherapy came in regular intervals thanks to ongoing support from the NCI in the United States. As security and the overall state of Uganda continued to deteriorate, the UCI’s funding streams and institutional support for drugs and staff were transitioned to the Ministry of Health. The doors

of the UCI remained open during the Tanzanian inva-sion in 1979.

1980s and 1990s: Reconstructing Cancer Care in a Growing AIDS Epidemic

In the early 1980s, clusters of young men in Europe and the United States started developing Kaposi’s sar-coma and a variety of terrible infections. In Uganda, symptoms of extreme wasting and infections in young men and women in Rakai district and elsewhere were also emerging. The AIDS pandemic and would wind up shaping both the experience of living in Uganda in the 1980s and 1990s and dramatically shape health care and international medical research throughout much of sub-Saharan Africa.

Particularly in terms of cancer and care, the 1800s and 1990s marked a period of extensive research on Kaposi’s sarcoma and its relationship to HIV. Early publications, such as “Further experience with Ka-posi’s sarcoma in Uganda,” by David Serwadda et al. for the British Journal of Cancer in 1986 documented cases of Kaposi’s sarcoma presenting at the UCI and efforts to treat Kaposi’s sarcoma with well-established chemotherapy protocols.

Studies in the 1990s covered a range of topics, includ-ing childhood Kaposi’s sarcoma and its relationship to HIV status at the UCI, as documented by Edward Katongole-Mbidde and John Ziegler, and the relation-

23The Health Digest

ship of human herpes virus eight and its causative connection to Kaposi’s sarcoma. Also during this time, radiotherapy services were finally established at Mulago, providing much needed radiotherapy care for cervical cancer and others. Over-all services for cancers at Mulago, however, remained under-funded and under-supplied, making it quite challenging to provide combination chemotherapy and supportive care at the UCI.

2000s: New Research Partnerships and Infrastructures

Since 2004, a partnership between the Fred Hutchin-son Cancer Research Center and the UCI has helped to revitalize training and research programs for cancer in Uganda. One of the cornerstones of this partner-ship has been to train a series of Ugandan physicians in oncology and public health. Where there was one oncologist for a population of over 30 million in 2000, there are now over eight practicing oncologists in Uganda. At the same time, better infrastructure for outpatient services, as well as greater financial autono-my from Mulago Hospital have led to a great uptake in cancer services here in Uganda.

For health journalists reporting on cancer in Uganda, I hope this brief summary of some of the major periods of cancer care, particularly in Kampala, is helpful. What I take away from this history is that the way research for cancer in Uganda happened over the past 50 years or so has shaped the services that are provided for care and also our basic knowledge about

cancer epidemiology. The emphasis on chemotherapy, the centrality of partnerships and relationships with the NCI and the International Agency for Research on Cancer, and the fact that the bulk of public cancer services are offered in a cluster of old buildings at the top of Mulago hill, all impact and shape how cancer care is delivered in this country.

On a final note, it is worth remembering that cancer treatments are intensive and intense, requiring that patients come for a series of chemotherapy infusions over time. Side effects need to be managed, distances need to be traveled, and regular consultations with physicians need to happen.

Even as the UCI builds out a larger infrastructure for managing cancer care, challenges and opportunities remain as to how to extend public cancer services “up country” and beyond the rapidly changing infrastruc-ture of the UCI. It will be interesting to see where and how the UCI expands its services beyond Mulago hill over the next ten years. And it will be equally interest-ing to see how the Ugandan health journalism commu-nity engages with reporting this ongoing story.

Marissa Mika is a Ph.D. candidate in African history and the history of medicine at the University of Pennsylvania. She is in Uganda for the year conducting historical and ethnographic research on how cancer care services in the country have been shaped by research projects and priorities. <mmika@sas.upenn.edu>

The Health Digest24

In oncology, there are certain words and phrases that (no matter how care-fully said) suck the air out of a room, like “you have cancer,” “you’ve re-curred,” “incurable,” “terminal,” and “hospice.” Such phrases require care-ful consideration before they are spo-ken, and most (if not all) oncologists understand the power of these words, and use them carefully. However, there are others that can be as powerful, yet remain in common usage in our field.

I still remember my fellowship days at Memorial Sloan-Kettering Cancer Cen-ter (MSKCC) like they were yesterday. When I decided to pursue a career spe-cializing in women’s cancers, I joined the medical gynecologic oncology clin-ic of Dr. Paul Sabbatini. In addition to

being an amazing clinical researcher, he is a brilliant clinician and, as a fel-low, I always sought to impress him.

On one clinic day, I recall seeing a woman in her 60s with ovarian cancer. She had recurred despite treatment. I went in alone, talked with her, exam-ined her, and then presented her to Paul.

“So, what do you think we should do now?” he asked.

“Well, since she failed this regimen, I think she needs to start on a new sal-vage treatment. What about a combi-nation?” I recalled saying. Paul’s ex-pression changed, and I still remember it like it was yesterday. He looked at me

by DON S. DIZON, MD Adopted from Kevin MD.com

In the language of medicine there are certain words

and phrases that (no matter

how carefully said) suck the air out of a room.

The power The power The power The power The power The power of theof theof the

Spoken word Spoken word Spoken word ininin

Cancer careCancer careCancer careCancer careCancer careCancer care

25 25The Health Digest

The language of medicine is a spe-cial one, and in the context of a serious medical illness, this is especially true. The way we communicate matters and even when we think our audience is our peers, in the era of social media, we must be cog-nizant of the wider reach of our words, our lectures, our publications, and our presentations.

kindly, but with a degree of exasperation.

“Don–if there’s one thing I’ve learned, it’s that people do not fail chemotherapy. The chemotherapy didn’t work, but no one failed; she didn’t and I didn’t. And, we don’t salvage people. Salvage is what you do with scrap metal and trash.”

I remembered being taken aback by this, primarily because I felt he was criticizing the common language of oncologists. “Salvage” and “failure on treatment” were words and phrases I had heard as a medical resident, and they were phrases used everywhere in oncology. Still, I respected Paul and his ex-perience, and though I did not understand what he was talking about at the time, I was more careful during our clinical discussions after that.

When I completed my fellowship, I was lucky enough to join the Developmental Therapeutics/Gynecologic Oncology ser-vice at MSKCC, and counted Paul as a col-league. In my first year as an attending, I took care of a young patient with ovarian cancer. She had just relapsed from first-line treatment and we had discussed where to go next.“I am hopeful treatment can help and pre-vent the cancer from causing you symp-toms,” I explained. “Despite the failure of first-line treatment, there are many more options for you.”

The words had barely left my mouth when the lesson Paul had tried to teach me came back in full force. My patient, already scared about her recurrence, became teary and turned away from me.

“You make it sound like this was my fault, like I did something wrong!” she said. “I’m sorry I failed chemotherapy, if that’s what you think, and I’m sorry I disappointed you.”

I was stunned. It was never my intention to place “blame” on something so devastat-

ing as a cancer recurrence, and I certainly did not mean to imply that she had failed. I remember using the rest of the visit apolo-gizing, ensuring my patient she had done nothing wrong, and that she did not fail che-motherapy, but rather- chemotherapy failed her. These many years later, I still consider this encounter a watershed moment in my career as an oncologist.Since then I have been sensitive to words and phrases, particularly when they are used in reference to patients, treatment, and cir-cumstances surrounding recurrent disease. I cringe when I hear someone referred for “salvage treatment” or how its “too bad she failed therapy.” Unfortunately, even today, it is still terminology that is part of the lexi-con of oncology.

A quick search on clinicaltrials.gov using the search terms FAILURE and CANCER resulted in 145 actively accruing studies, 20 of which had failure in the title. In addi-tion, a search in Pubmed.org using the same terms resulted in 54 papers with FAILURE in their title, published in the last 5 years. While these overall estimates are low, I sus-pect that in our everyday conversations, it is far more pervasive.

The language of medicine is a special one, and in the context of a serious medical ill-ness, this is especially true. The way we communicate matters and even when we think our audience is our peers, in the era of social media, we must be cognizant of the wider reach of our words, our lectures, our publications, and our presentations. While our colleagues may understand what we mean when we refer to treatment as “sal-vage therapy,” the same may not be said of how our patients or the public hear it.

Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.

The Health Digest26

Imagine being six years old and then you are told you have cancer. Now imagine being told that the cancer you have is so dangerous that you have very slim chances of surviving. This is the trauma that Stella Ahaire (not real name) had to face when she realised she had cancer.

Jovas Nankunda, Ahaire’s mother initially passed off her daughter’s swelling stomach as a simple illness that would heal with time. It

did not. Instead, Ahaire lost her appetite and developed a fever.

“I would wake up in the night to pass a wet cloth over my daugh-ter’s body because she was over sweating and I also helped to po-sition her well because she expe-rienced difficulty in breathing,” Nankunda recalls.

Hoping to save her daughter, Nankunda took her daughter to a local hospital in Rukungiri where she was given anti-malarial drugs. Even then, she did not get better and her abdomen kept expanding. Unfortunately, due to Nankunda’s limited income, she was forced to visit a herbalist, she says. It is only when she was brought to the Uganda Cancer Institute by the local councillor in April 2011 that

Ahaire started showing signs of improvement.

Burkitt’s lymphoma is a childhood cancer caused by the Epstein-Barr virus, a potentially fatal and disfiguring virus that often develops in the jaw or abdomen. It is also associated with malaria. The lymphoma is known to grow rapidly such that the tumours double their size in five days.

“A fast-growing tumour often develops in the jaw or abdomen that can interfere with breath-ing and make it difficult for young patients to feed adequately leading to malnutrition,” Dr Jackson Orem, Director Uganda Cancer Insti-tute says.

Other characteristics include weight loss, anae-

mia, painless lumps in the armpits and groin and breathlessness as the blood vessels get blocked by cancer cells.

Dr Orem says Burkitt’s Lymphoma is the com-monest cancer affecting children in Uganda. Currently, the five-year survival rate in Uganda is less than 40 percent. The institute receives between 150 and 160 children with the lym-phoma annually. These are admitted and treated at the recently constructed Lymphoma Treatment Centre (LTC).

Dr Fred Okuku, an oncologist at the Institute says at least 86 percent of the children admit-ted go into remission, meaning that the cancer signs disappear when treated with chemother-apy.

“We still administer the old combination, COM-Cytoxan, Oncovin and Methotrexate that was developed forty years ago and are still seeing the same success in the same regimen,” Dr Okuku says.

He, however, notes that government is unable keep up with the growing population and pa-tients sometimes have to buy these drugs.

“Many of the patients cannot afford the costs of these drugs and as a matter of fact, many do not seek early diagnosis and treatment. This forces them to come when the cancer is in its advanced stages,” he laments.

Peter Genze, the operations manager of Bless a Child, a centre handling cancer stricken chil-dren says the challenge of delay in seeking medical assistance can be overcome through creating awareness. This awareness, he says, should target parents and local communities to identify these cases early.

The international community responds:The Burkitt’s lymphoma Fund for Africa (BLFA) based in Seattle, Washington and Di-rect Relief International (DRI) early this year announced that the collaboration between the Fred Hutchinson Cancer Research Centre and the Uganda Cancer Institute (UPCID) was se-lected to receive grant funds and medicine.

Amazing Courage By Rachael Ninsiima

Children fighting Burkitt’s

Lymphoma

27 27The Health Digest

Uganda Child Cancer Foundation (UCCF) in collaboration with UCI is carrying out School campaigns on cancer con-trol called the 3C (Children Caring About Cancer)

Research from our school campaigns on cancer control and management show that more than 50% of the children in schools we visited confirm being affected by Cancer bur-den in many ways. Children Caring About Cancer (3C) is a UCCF initiative supported by House of Hope- Uganda (HoH) in partnership with Uganda Cancer Institute (UCI). It’s a platform for children and young people to interact, form strategies and solutions to control and manage cancer in their own communities.

The main objective is to empower children to create Aware-ness about Cancer, and to work to together with all stake-holders toward a shared strategic direction of controlling and preventing cancers in Uganda. Currently the activities of 3C are coordinated in Uganda by UCCF. Over 20 schools have joined the program with each school effectively imple-

menting vital activities in cancer control and management

The most outstanding contribution has been made by Mt St. Mary’s College Namagunga. They have taken this campaign seriously, not only doing awareness but they also practically support patients with cancer in their battle with the disease. This term the girls are supporting the 1.1/2 year old girl with that was abandoned by the mother at the cancer Institute.

Uganda Cancer Institute (UCI) is trying its best to provide clinical care with the available resources, but if there is lim-ited effort to create awareness in cancer Control and man-agement to the public, the problem will continue to grow.

Ben Ikara is the Operations Manager -Uganda Child Cancer Founda-tion, Cancer Awareness Advocate and National Coordinator –Chil-dren Caring About Cancer Program

ikaraone@gmai.com, benikara@uccf-ug.org

By Ben Ikara

Cancer control and prevention in SCHOOLS

The funds are to aid in the treatment of 300 Ugandan children affected with Burkitt’s lymphoma for two years at the Uganda Cancer Institute.

“A grant of $128,000 (about 320million) was given to UPCID to cover a variety of costs for patient care and treatment,” said Miriam Sevy, Board President of BLFA.

The fund which was established two years ago has a mis-

sion to save the lives of African children afflicted with Burkitt’s lymphoma by improving diagnosis and treat-ment. It seeks to ensure the availability of medical care, overcome the social and economic barriers to complet-ing treatment and improve the capacity of the medical infrastructure to diagnose and care for patients.

Racheal Ninsima is a science journalist with The Observer News-paper, ninsiima@observer.ug

The Health Digest28

Palliative care was very slow to make a start until affordable morphine was available in Africa and over the last twenty years since we first brought it in, twelve more countries have taken it on whereas before there were two countries only in the previous twenty years, so that was a big move. It actu-ally reflects what we all know, that until you can control pain you really can’t practise palliative care. The morphine that we make here in Africa is very affordable, it costs $1 for ten days’ treatment and it can be taken at home by the patient, the patient is in control. So we’re able to then, once the pain is controlled, we’re able to go forward and look after their spiritual problems, psychosocial problems, their cultural problems, so many things that come up when we have time and we can sit and talk to them and try and help them and advise them on those things and take action on things that they have. So Uganda is an example, it’s now consid-ered the model for this. We are now making morphine for the whole country from the hospice for the whole of Uganda and that’s new, that’s only started this year. As long as the money is coming from the government we won’t have any stock outs but there have been terrible stock outs and it’s happening all the time across Africa. Countries just starting with morphine, they’re not getting it through first of all to the people on the ground and the very poor people, but then suddenly the

supply stops because they haven’t imported it in time and that causes terrible suffering as well. So we’re trying to prevent all these things which are coming forward. At first it was just get it into the country, now it’s get it through the country. Does this problem come from lack of pro-duction and risk management? It’s probably mismanagement in ordering it in time. Somebody keeping… and there’s a lot of bureaucracy and there’s a lot of people in the bureaucratic chain don’t want to import morphine and if they can they’ll block it. It’s really sad because they’ve been brought up to think it’s addictive and it shouldn’t come into the country and trying to change them is very difficult. But the big thing for actually changing it is to get undergraduate training for palliative care into the undergraduate curricu-lums, particularly for doctors and nurses. Now we’ve been doing this since 1994 in Uganda and now every doctor and nurse that’s come through since then knows what palliative care is. It’s made a huge difference in the country

Palliative care in AfricaDr Anne Merriman Hospice Africa, Kampala, Uganda

The morphine that we make here in Africa is very afford-

able, it costs $1 for ten days’ treatment and

it can be taken at home by the

patient.

29The Health Digest

but it’s very slow getting through. We’ve got five universities in Nigeria and only one of them has an undergraduate curriculum in palliative care. In that huge country, 150 million people, it re-ally needs help. Could you talk about your involvement with the National Cancer Control Program? Yes, there’s six booklets from WHO on that and one of them is on palliative care. There’s a lot of concentration, in fact the two blend with each other on chemotherapy and radio-therapy which is terribly expensive but has to come in. It has to come in but the people doing radiotherapy and chemotherapy need to work alongside us, we need to be together from the start, from the diagnosis onwards in cancer. If we don’t work together then the patients won’t get the best care so they brought in palliative care because 95% of people in Africa now never receive chemotherapy or radiotherapy. In Uganda, where we’ve only got one centre when I calculated the numbers they are less than 5% of the people who need it are reaching them. But still we’re reaching less than 10% in pallia-tive care and yet palliative care is cheap, it’s just a matter of increasing the knowledge and allow-ing the morphine to get through to them so that they can practise palliative care. What has the effect been with HIV related cancers? The HIV related cancers are actually changing because antiretrovirals are now so much more available. They’re only available to people who can reach the centres and so there are still at least a third of the people with HIV who get into stage 4, which is AIDS, and cannot reach antiretroviral therapy because they can’t even afford the bus fare, they can’t even… anything they have is going to take away from the food in the family, from the school fees for whatever. So they don’t go for it and they will still die of HIV/AIDS. But the others, if they can have continuous supply of ARVs will actually die of something else. But the cancers have changed. Kaposi’s sarcoma was our number one cancer up until 2002/2003, now it’s about number

four. Cancer of the cervix is number one now and breast is second so it’s changing, the whole pattern is changing and we have to keep an eye on it and address the needs at the time, what is there. But for us in palliative care, the burden for palliative care is much higher in cancer than it is in HIV/AIDS, that’s because AIDS is going down and cancer is going up. What can be done for the future of pallia-tive care? I just feel it’s only through those we train that we’re going to spread palliative care through-outfrica. We have now an institute of palliative medicine for Africa which last time I talked to you we didn’t have, that was our education department that’s now recognised as a univer-sity level. And we have a degree and we hope to have a Masters next year or the year after. This is for the whole of Africa and people are com-ing from all over the place which is wonderful. It’s through those we train that the future of palliative care will be extended in Africa, not through the small numbers that we see but we must have perfect palliative care so that we can train people and show them how to do it right and how it can work in the African situation.

There’s a tendency in Africa for everybody wanting to do training and to have another certificate in their portfolio but they don’t actu-ally carry it out afterwards. But if somebody does a training in palliative care and doesn’t practise it, they’re de-skilled, they may as well not have done it. So we’re now looking more to see whether their employers are prepared to put them into palliative care after they come on the degree or after they come on a year’s course. We have a lot of short courses as well but for those longer courses which are expensive, we really need to put the money and the training into those people who are going to be leaders in palliative care in the future.

AORTIC 2011, Cairo, Egypt Adopted from http://ecancer.org

The Health Digest30

“Yes, I knew they were supposed to die but I made sure they would die in comfort,” he af-firms in a soft voice but the conviction with which he says it, makes it loud enough for me to notice even as we drive through the streets of Kampala from Mulago Hospital.

Henry Ddungu, before becoming Dr Ddungu, while pursuing his first degree in Medicine and Surgery at Makerere University during clinical rounds met many distressed cancer patients--dying in pain.

As a young boy, he helplessly watched his own father being eaten up by cancer. He could do nothing to lessen his father’s pain till his death.

Yet Ddungu’s intention as he started studying medicine at Makerere University was to be a general physician but in his fourth year when a doctor from Hospice talked of palliative care and offered him an introductory course, his interest was stirred.

His sub specialty would be blood cancers like leukemia, lymphomas, bone marrow and failure syndrome among others.

“Understanding all aspects of blood would help me understand cancers better,” he said.

To ensure that his plan went through, Dr Ddun-gu joined Hospice Africa Uganda for further training in palliative care where at the end he would offer end of life care to patients in their homes. Two years later, he decided to do a mas-ters degree specializing in internal medicine at Makerere University and after 3 years his passion for palliative care drove him back to Hospice.

While working at Mulago hospital, he got an opportunity to study hematology at McMaster University in Canada.

He came back and helped push for the training of two clinicians at the same university as he advocated for hematology oncology for students studying medicine—a rare speciality in Uganda.

In fact Dr Ddungu says there are only four hematology oncologists working in the govern-ment sector.

Equipped with all the knowledge there is to know about blood cancers, he is now a consul-tant with the Uganda Cancer Institute at Mu-lago.

“The fact is that blood cancer is a killer but I give my patients hope of death with minimal suffering,” he explains. He has fond memories of some of his patients. A case in point is a

By Florence Naluyimba

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31The Health Digest

13-year old girl with leukemia who told him to allow her go back to the village and die.

“It was painful to hear her say that, but I gave her medicine and a year later she came back to thank me, I have never been happier,” he says.

But his job comes with challenges. For instance one has to always know the exact extent of the disease or exact cells.

“Working blindly is not the best. I know what to do but I can’t do it,”he notes.

Dr Ddungu says that the Uganda Cancer Insti-tute has most of the needed medicine to treat cancer but the novel targeted treatment is too expensive for even the more developed coun-tries.

The sadness he always lives with is knowing that his patients will sooner than later die because of lack of better medicine.

“Every doctor would love to catch a patient’s disease in its earliest stages but unfortunately patients present late. It’s often not their fault, they are not aware of little lumps.”

This, he notes requires creating more awareness, the reason he has been hosted on several radio talk shows to talk about the disease.

Dr Ddungu is however perturbed by the fact that for a long time, cancer has not been given precedence especially in terms of supportive care.

“The need for blood is so high in this country but cancer patients are not prioritized for blood transfusion. More doctors, at least specialists are needed. Some doctors don’t have lunch and work nonstop on patients who sit from morn-ing till late and even some go home without treatment,” he reveals.

But even with these challenges, Dr Ddungu ap-preciates government’s effort to construct a new cancer building, making available free cancer medicines to patients and setting up diagnostic laboratory services.

Away from work, the 40-year-old doctor loves music. He plays a trumpet and is aspiring to master a saxophone, an instrument lying in wait in his house.

Music he says gives his patients hope and spiri-tual healing. “When a patient tells me, doctor I slept peacefully, that makes my heart smile,” he says with a grin.

Florence Naluyimba <f.mujaasi@gmail.com> A health reporter with NTV

The Health Digest32

The potent analgesic property of morphine was first isolated in 1804, and after more than 2 centuries morphine is still the gold standard for moderate to severe pain. It is relatively easy to produce, and compared to most pharmaceuti-cals, morphine is dirt-cheap.

Therein lies the cruel conundrum: Morphine is widely available in Western, developed nations, but in resource-constrained countries, compris-ing about 80% of the world’s population, mar-ket conditions have grossly inflated the drug’s price, leaving the majority of the world’s poorer cancer patients suffering in severe pain because they can’t afford analgesic relief.A Ugandan Model

It is important to distinguish between cost and price. The cost of morphine is pennies per dose; the inefficiencies within the market drive the exorbitant prices. In Uganda, what we needed was a way to bypass many of the supply and demand issues that created access barriers to pain medication and left the country without any morphine for more than 6 months in 2010.

For years, a nongovernmental hospice in Ugan-da, Hospice Africa Uganda, has been producing its own liquid solution morphine. Over the past year, the Global Access to Pain Relief Initiative (GAPRI) has been working with the Ugandan Ministry of Health and local palliative care stakeholders in Uganda (including the Palliative Care Association of Uganda and the African Palliative Care Association) to scale up Hospice Africa Uganda’s production and certify them as a drug manufacturer. The hospice now sells

morphine solution to the government at a cost 40% less than the cost of importing the drug from an international supplier.

This process also makes the local market more efficient. Since Hospice Africa Uganda produc-es its own liquid morphine, they actually manu-facture on demand, taking only a week to fill an order. They are able to produce three different incremental dosages in real time; the expiration clock starts ticking at the time they mix it so they can hold the raw powder for much longer, giving more shelf life than an imported finished product. Most importantly, the raw powder does not need to be registered, meaning that they can procure the raw ingredient from the supplier that gives them the best price.

Win-Win SituationThis is one of the newer approaches that can actually produce and deliver morphine to cancer patients in pain for literally pennies a day. The pain treatment costs in the Ugandan model are about $1 per week. And because it resulted in the government getting heavily discounted morphine, in turn, the Ugandan government has agreed to pay for annual orders up front, al-lowing the hospice to better plan procurements.

The government also pays for morphine for all pain patients in the country for free. That includes thousands of patients being treated by hospice programs across the country that previ-ously had to purchase their own morphine out of pocket—an untenable expense for most.

Hospice Africa Uganda used to spend over

By Meg O’Brien, PhD March 1, 2012, Volume 3, Issue 4

Inefficient Markets Impede Cancer Pain Relief

33 33The Health Digest

$40,000 per year on morphine; now they’re making a small profit on every bottle they sell to the government. And all their patients get treated for free. It is a win-win situation—the overall price has gone down across the board, the efficiencies are up, we’re wasting less product, we’re not having to toss expired product, and all the patients are getting their pain medications when they need it.

This is an example of a creative, coop-erative approach by a hospice that was willing to take on a risky endeavor for their patients, local partners who sup-ported them, a proactive government that believed in and invested in local solutions, and a small international orga-nization that is helping them both to cut through bureaucratic hurdles.

This collaboration is circumventing the challenging market inefficiencies endem-ic in much of the world’s poorer regions, and by doing so, we have helped relieve unnecessary pain and suffering. Address-ing the global tragedy of needless pain is a continued work in progress, and the Ugandan model is continuing to be refined, but it represents a point of light on the horizon—hope for affordable, government-led solutions to unneces-sary suffering. .

Dr. O’Brien is Director, Global Access to Pain Relief Initiative, a joint program of the Union for International Cancer Control and the American Cancer Society.

Adopted from http://www.ascopost.com/

On the day we cure cancer I will rise in morning dark. I will stand in last night cold, and watch stars fade. The light will come and a following breeze blow. On that incredible dawn, there will be brilliance. I will make sunrise rounds on the day we cure cancer.

I will stay late and breakfast with my wife. We will talk about flowers, kids and books. I will stand out and see chil-dren with parents laugh and scurry almost late to a bus. Mothers on porch steps.

Grandfathers there for early stroll. Families whole. I will see life on the day we cure cancer.

At the hospital, we will drink coffee and eat donuts. Make new syringes into trash. Pour harsh drugs down drains. Turn radiation monsters into kaleidoscopes and planters. Dull scalpels. Plan vacations. Have wheelchair races. Give out beds to homeless. We will smile quietly on the day we cure cancer.

I will call the insurance company and wish them well. Thank the lab tester, blood drawer, x-ray taker, pharmacy mixer, front desker, researcher, bill sender, educator, social worker, floor cleaner, food cooker, CT scanner, doctors and every disease task doer. Congratulate all on victory day. I will salute the soldiers on the day we cure cancer.

I will cry, I will cry, and I will finally cry. I will recall fallen millions. The men and women and moms and dads and sons and daughters and leaders and followers and smart and dumb and good and bad and weak and powerful. I will curse waste, loss, pain and fear. I will replay battles fought and won or lost. Honor the harsh bravery of victims. I will remember them on the day we cure cancer.

I will call survivors. Make sure they are all right. Tell them it is OK to come out. No need to cower. They are whole. It is safe. On the day we cure cancer.

I will fish. I will read. Fix the swing. Hold warm earth. See art without darkness. Enjoy a lunch meal. I will live with-out struggle. On the day we cure cancer.

At end I will be home and walk in joy with those I love. We will hold hands too tightly. Feel the emptiness of the loss, the fullness of the saved and the hope of not again. I will not watch the setting of the day. I will hold the brightness. The glory of the day we cure cancer.

by JAMES C. SALWITZ, MD

On the day we CURE cancer

Adopted from Kevin MD Conns.

The Health Digest34

Brother Anatoli, pitured above, shows off the large room where he keeps an assort-ment of dried leaves, tree barks, roots and other items. They look like big bales of cloth ready to be sold off.

“All these will be finished within a month,” he says pointing at them.

Every month he treats more than 10,000 pa-tients with various ailments, including can-cer. As a forest owner in Rakai, he harvests most of the herbs for his patients from here and has managed to keep a list of plants and trees and what they cure.

Brother Anatoli gives his patients specific dosages, just like modern doctors, to be taken at regular intervals. Some of his pa-tients and others who are curious about his research come from overseas.

The aging Anatoli now 86 years old has clinics in Rakai, Masaka, Ibanda, Kisoro, Nyamitanga, Kibuye, Mbale, Kiteredde and Kampala. He claims he can treat about 90 diseases, including complicated ones like cancer and has recruited and trained several assistants to handle most cases in his ab-sence.

Like all herbalists, Brother Anatoli has em-braced referral and refers the majority of his patients suffering from advanced cancer to referral hospitals like Masaka, Kitovu, and the Uganda Cancer Institute (UCI) at Mulago, and continues to supplement their treatment with herbs. Brother Anatoli en-

courages his patients to report cancer early to make treatment easier which is a major problem that the conventional doctors are struggling to preach. Early diagnosis is key in the treatment of cancer.

“The problem is that some of our people think that they have been bewitched when they develop cancer and this complicates matters, I have written books against the dangers of believing in witchcraft,”he said.

He also advises the public to desist from certain foods that may increase their risk of suffering from cancer. Other risk factors associated with cancer are genetics, HIV/AIDS, smoking, and alcohol.

Even as a herbalist, Brother Anatoli con-curs that cancers can only be treated using a combination of herbal medicine and mod-ern drugs. He promises to make more herbs that can be exported and believes some tra-ditional medicine is even more potent than modern drugs.

The problem, as he sees it, is that herbal medicine is sometimes buried into taboos and superstition. Brother Anatoli, a twin, has been a priest for over 60 years, the second Banakaroli brother to be ordained. The Or-der was founded by Bishop Henry Streicher in 1927. He started herbal research in 1971 on the request of his diocesan superiors.

Dismus Buregyeya <dburegyeya@yahoo.com>Works with The New Vision based in Masaka.

Tradition Tradition Tradition and and and ModernizationModernizationModernization

Brother Brother Anatoli Anatoli

administers herbal

medicine alongside

modern drugs to treat CancerCancer

symptoms

By Dismus Buryegera

35 35The Health Digest

The World Health Organisation (WHO) Hu-man Papillomavirus Information Centre of 2010 reports that the Human papillomavirus (HPV) that causes cervical cancer has the highest rates of infection in the age group 15 to 24. In Eastern Africa, about 33.6% of women in the general population are estimat-ed to harbour cervical HPV infection at a giv-en time. Cervical cancer is the 2nd most com-mon cause of cancer worldwide, but it affects mostly women in developing countries.

Immunization is a key important way in which HPV can be controlled, with subsequent re-duction in the incidence of cervical cancer. In Uganda, HPV vaccination is not yet available in the public sector and yet there is a growing awareness and demand for it. We developed a vaccination campaign which was aimed at enabling the public to access the HPV vac-cine through the private sector and also to increase the demand and awareness for it.

Campaign strategy: In August 2009, the Uganda Paediatric Association working with staff from the GSK country office developed a vaccine drive for the HPV vaccine. The campaign mainly used the electronic media. Mobilisation messages and announcements for upcoming immunization drives were made through email, Facebook and SMS me-dia. There was a multiplication effect as each email or Facebook message recipient was asked to forward to a circle of friends or post notifications on other walls. SMS media was mainly used to serve as reminders.

During the vaccination drives various media agencies were engaged in interviewing the

health workers and the participants and shar-ing these stories with the public to raise more awareness.

During the vaccine drive, HPV talks as well as sexual health talks were given and a stand-by paediatrician answered any questions that the public had.

The results: The immunization drive was mainly carried out around Kampala city. The information is estimated to have reached over 800 people. Between August 2009 and March 2011, the campaign was able to mobi-lise 500 young women for immunization and had 180 females immunised. The age range had 180 females immunised. The age range of those immunized was 9 years to 46 years. of those immunized was 9 years to 46 years. Those who completed their 3 doses were 166 Those who completed their 3 doses were 166 (92%). The commonest reason for falling out (92%). The commonest reason for falling out of schedule was pregnancy.

Conclusion: The use of internet social netConclusion: The use of internet social net-works and email is a powerful tool in promot-works and email is a powerful tool in promot-ing child health campaigns such as the cervi-cal Cancer Vaccine Drive. The availability of a technical person to answer any questions increases the confidence of the potential re-cipients and increases up take. A strong part-nership involving school teachers, parents, health workers, policy makers, politicians, corporate organizations and pharmaceutical industry can facilitate professional organiza-tions such as the UPA in making a big impact among the young women of this nation by protecting them from Cervical cancer, while equipping them with knowledge and skills in making healthy choices.

<sabrinakitaka@yahoo.co.uk>

A powerful tool in cancer awareness

By Dr Sabrina Kitaka

Social Social Social MediaMediaMediaEfficacyEfficacyEfficacy

The Health Digest36

Forty eight year old, Juliet Tiperu, has been sell-ing Malwa, a local brew made of millet for the last 20 years. Most of her customers at ‘Sheraton’ restaurant are men who start strolling in at 5.00 pm and drink until ‘happiness stops’ for Ush 3,000.

This ‘Sheraton’ is a grass-thatched hut with no doors and windows. The meeting point in the hut is the ‘malwa’ pot where long straws con-gregate. On a warm Sunday afternoon, music is booming, a small television sitted on a hill of old furniture is showing almost nude dancing girls dancing to Bolingo Congolese music. People are happy.

Arguments are about politics or even girls and the few around the pot, smile sheepishly, but voices get louder, punctuated with a sip of Malwa as happiness hours extend. Except for one day in a month, today, when the group holds a science Café.

Today at Tiperu’s there are visibly more people. It is not about the Gorogoro- a bonus jerrycan of Malwa for all? “Many people want to hear what they are talking about. Today we shall dis-

cuss cervical cancer and a vaccine in the science Café,” said Tiperu as she refills the pot with hot water.

Science Café(s) are modeled around French Phi-losopher Marc Sautet’s Café Philosophique that took philosophical discussions to French coffee houses. Later British Science journalist, Duncan Dallas promoted the concept to create science Cafés in 1998.

In Uganda, in one of the models it is done at “convenient timing, in a non-academic location and relaxed informality with high caliber scien-tists,” says Christine Munduru, a public health worker and volunteer leader of the project, entitled “Taking Science to Rural Ugandan Com-munities.”

Science Café in Operation:Uganda has another model of science café for journalists and scientists, held once month on a Friday and coordinated by Kirunda Kakaire. Population Reference Bureau (PRB) based in the USA sponsors it. These ones are targeted at journalists in an informal setting like a bar, café or restaurant.

By Esther Nakkazi

Talking Cancerat Malwa Science Cafe

37 37The Health Digest

Dr. Agnes Bukirwa, is a medical officer at Mild-may, she will talk about cervical cancer at the Sci-ence Café today. She introduces herself as Mama Naomi and points at Tata Naomi, her husband.

The World Health Organization (WHO) esti-mates that more than 7 million Ugandan women of reproductive age are at risk of developing cervical cancer; every year about 3,600 women are diagnosed and almost 2,500 die from it.

“There are a lot of myths about the HPV vac-cine among those aware of it; most people don’t know it exists. People don’t have information and that poses serious danger to women’s health,” says Munduru.

How many people know how cervical cancer is transmitted? Pause. How many know how it is prevented? Pause. No answer. “Back home you have women who may have cervical cancer,” continues Dr. Bukirwa.

A phone is passed around for members to view the cervix. Men shake their heads. Some laugh. Dr. Bukirwa goes ahead to explain the HPV and how men can transmit it sexually. She speaks for only 30 minutes; adult learners do not want long talks.

Some women are standing outside the circle. Chicken are pecking at the grains from the pot that pour out when more hot water from a small yellow jerrycan is added and it overflows. Chil-dren that have come with their mothers chase each other around playfully.

It is question time. To ask one, you need to introduce yourself and which Malwa group you belong to if you are not a member here. “My name is Ghadafi of Uganda,” everybody laughs loudly. “If cervical cancer is for women, how do men infect women?” he asks.

“Whenever my sister had sex with her husband, there was blood. Now she has cervical cancer. How can you help her when she is already sick?” asks Judith Etonu.

During the cafe, members can ask questions in any language and it is translated. So one question and answer could be translated in four languages.

They are also video recorded and played back. One challenge is that when people attend the ca-fes, they want treatment immediately. If they are HIV positive, they expect to get anti-retroviral therapy when the café ends, says Geoffrey Ang-utoko the coordinator.

So far this group has discussed male circumci-sion, discordance in marriage and many other HIV/AIDS topics.

“It is also important to come up with some intervention strategies when engaging very poor communities,” said Ruth Wanjala from the Kenya Science Cafés. For instance, it should be important to organize for pap smears and mam-mograms for a community but organisers should be careful not to turn the Café into a medical consultation session.

Patrice Mawa is at the café. A biomedical research scientist with Medical Research Council (MRC) based in Entebbe he started the idea of this model of science café in Uganda in 2007. “I used to go out and people would ask me a lot of questions about the research station. I came up with this idea to give back to the community,” he says. “Knowledge is power. Empowering them and engaging them will make a difference.”

“This model captures more men who are the decision makers in Uganda and most do not know much about women’s issues. But it ben-efits women more. We help them with the topics based on the problem we see in the community and link them to service providers,” he explains. The Uganda project, which basically helps women, is one of five awarded $10,000 in April 2012, to educate developing country populations in need about disease prevention through vac-cines and immunization.

The five projects were in Pakistan, Uganda, Egypt, El Salvador and South Africa — and were described as the most innovative and practical - chosen through a peer reviewed competition from among 60 applications from 25 low and middle-income countries to the Southern Vac-cine Advocacy Challenge (SVAC), created and supported by the Canadian-based Sandra Rotman Centre.

The Health Digest38

Remarkably, it is the first time the challenge approach — involving the invitation of inno-vative ideas from a community of stakehold-ers to address a problem — has been used as a tactic to promote developing world vaccine education and use said a statement from San-dra Rotman Centre based in Canada.

“These projects and organizations are find-ing new ways to spread basic messages about health and vaccination and immunization that will have a profound impact on their societies, either by reducing child mortality or improving their quality of life,” says Peter A. Singer, MD, and Director of the Sandra Rotman Centre.

“And they do it in an amazingly effective way, by building the desire and demand for vac-cines on the part of the people who need them most.”

In the Decade of Vaccines, a 10 year col-laboration by the global health community to extend the full benefits of immunisation to all people, “Innovative approaches to generat-ing public awareness and demand are a critical component to realizing this vision,” said Dr. Nicole Bates, Senior Program Officer, Global Policy & Advocacy at the Bill & Melinda Gates Foundation.

With support from Cafe Scientifique UK, the Wellcome Trust and Burness Communica-tions, the cafes have grown in popularity and the organisers have sought to build partner-ships with scientific research organisations and individuals keen to replicate this public engagement model in Africa.

But so far immunization levels have steadily increased globally over the last 30 years with 80 percent of the world population being vac-cinated by 2006, preventing an estimated 2.5 million child deaths annually.

Dr. Singer says: “supply of vaccines is not enough. Success at preventing disease with

vaccines in developing countries also depends on building demand. And for that we need “voices from the global South” to mo-bilize creative energies and new voices at grass-root levels. These initial SVAC projects represent an important and innovative step in that direction, filling a significant gap.”

Science Cafés are an excellent way to distill Scientific Research Information to the lay public. The informal relaxed setting and lively debates are quite effective in get-ting scientists and the lay public to talk to each other without hangs ups from either side.

“I believe Science Cafes have a bright future in Kenya and Africa and that Public Engagement with Science can play a key role in accelerating the country’s and con-tinents development,” said Wanjala.

“Its different to speak at science cafes. Their questions are different. It is a group that is seeking knowledge,” says Dr. Bukirwa as she walks home with her husband after the cafe. This is one of the weekend activities they engage in and it gives them time off their busy schedules during the week.

Cost of Treating CancerBy Flavia Lanyero

39 39The Health Digest

Alice Aneno, 35, has been hospitalised at the Uganda Cancer Institute (UCI) since February with lung cancer. Speaking with difficulty be-cause she is in a lot of pain, Aneno narrates how she has never had to pay a penny to receive che-motherapy or for any other cost. But she has had to pay for her upkeep while at the hospital.

“My sister has been taking care of me since I ar-rived. Her husband works, and they both shoul-der the expenses here especially to buy food and other supplements like juice and fruits,” says Ms Aneno who hails from Naguru in Kampala. A plate of food at the institute costs Shs 1,000 for two people, it would require at least Shs 4,000 for food in a day without other expenses like juice or transportation.

“Since I have not been working for a while, I do not know what I would have done if my sister was not here,” she says.

With less than 60 beds for inpatients at the UCI, Aneno is one of the few patients whom the Insti-tute can afford to hospitalise for chemotherapy, leaving the rest to make endless trips for review. Nearly 60% of the institution’s cancer patients fail to return to complete treatment, and even-tually succumb to the disease despite increased access to drugs, according to Dr. Fred Okuku, an oncologist at the institute.

“Things are much better now. At least over 70 percent of our patients are covered for chemo-therapy. But the number of patients who com-plete their treatment has remained low, as few people return to the hospital for further treat-ment,” Dr Okuku says.

“For some patients, when they feel better, they choose not to come back, but majority of the people who do not come back say they do not have enough money to (pay for) transportation back to the hospital or to sustain them when they come back,” Dr Okuku says. Chemotherapy often requires many frequent, short reviews as often as every two weeks – a requirement that is difficult for the many patients who come from distant places.

Although nearly 70 percent of patients are cov-ered for chemotherapy, the remaining 30% pres-ent with rare cancers whose drugs may not have been ordered for at the National Medical Stores or may be too expensive for either the patient and the government. Some drugs, especially second-line treatment, can go for up to Shs 50 million. Very often also, patients are asked to pay labora-tory tests of up to Shs 60,000; plus ultra sound and x-ray for Shs 10,000 each. Those who cannot afford such costs just do not access treatment.

For now, the Cancer Institute has set up the Uganda Child Care Cancer Foundation which supports children diagnosed with the disease. The foundation provides transport to and from Mulago Hospital whenever one has an appoint-ment, feeds the children in addition to offering palliative care. But no such service exists for adults, even though, as Dr Okuku notes, care and support are fundamental if patients are to recover from their cancers.

Flavia Lanyero is a Health and Science Reporter with the Daily Monitor.

Even with incresed access to drugs, the cost simply keeps growing higherEven with incresed access to drugs, the cost simply keeps growing higher

The Health Digest40

I nearly went for cervical cancer screening on Friday 08th June. I have two phones which I can set to the tune of 10 alarms and a third phone with one - all to guarantee that I would wake up between 5 and 6:30 am, giving me enough time to get prepared.

I had made an appointment with my friend Ann to be at the cancer Institute by 7 am and chitchat while waiting for our names to be called out.

All the alarms rang and I kept groggily switch-ing them off.

At 7:45 am I sent Ann a text message telling her of how I had failed to make it and that I had just completed my period. Nearing 10 am she was still in queue and from the confines of my bed, I encouraged her to be patient.

It is not the first time I have wanted to do a cervical cancer test and failed.

I remember when I was pursuing reproductive health stories in Masaka referral hospital in July 2011/last year, a midwife who wanted to show me that she did not only help welcome babies but multitasked, assured me that she could check me for cervical cancer.

I wanted it so bad that even my colleague, Irene egged me on. But – I have that ugly deterring voice which I unfortunately obey in most cases. It asked me the usual silly questions, are you shaved?, haven’t you just finished your monthly routine?, do u want a stranger to poke their way in your most pri-vate of parts?, are u sure u want to know the results?

Endless questions with prompt answers, No, Yes, No and No.

I wasn’t ready! Would I ever be? I was to find

out in early 2012.

An opportunity presented itself at Uganda’s parliament grounds near my place of work. I was enthused - short lived it was. The same ugly voice, the same questions, the same an-swers. I walked away in shame.

Now for breast cancer, I do get paranoid each time I think of going for a test. I start get-ting physical pain in my breasts, even now as I write, I reach for my left breast – always a menace - indeed it is painful. It is that bad! I swear it isn’t psychological.

I even freak out each time that I do or rather attempt a home test of touching my breasts to feel for lumps or nodes?? I fear my body! That’s it!

Sometimes I look at my teats and get con-vinced that they are not okay. Surely a can-cer is slowly eating them away! Sometimes when I get a chance, I always check out other females’ breasts (I am straight) for solace - it never works.

I live in worry when I allow myself to think of cancer. Guess that’s why I haven’t done any breast or cancer stories and somehow, I always skip articles on the subject.

But I know that I’ll go for that test any time – not soon. Surprisingly, I always go for HIV testing. Is it because I know I haven’t messed! In a year, I can even have three tests despite not indulging in any act that would bring me in contact with the abhorred AIDS virus. No safe or unsafe sex, no needle pricks and no blood transfu-sion. I haven’t seen anyone suffer from cancer first hand, save from movies or series like Desper-

Moment of Truth: Cancer or HIV testing?

When taking a mdedical

test becomes a nightmare

By Florence Naluyimba’s

World Health Organisation (cancer section)http://www.who.int/cancer/en/

International Agency for Research on Cancerhttp://www.iarc.fr/

WHO cancer mortality and incidence statistics for all countries worldwide, http://globocan.iarc.fr/

Pan American Health Organisation (WHO) – cancerhttp://new.paho.org/hq/index.php?option=com_content&task=view&id=5438&Itemid=3940

WHO Regional Office for the Eastern Mediterranean (EMRO) – cancer (covers North Africa and the Middle East)http://www.emro.who.int/ncd/cancer.htm

WHO Regional Office for Africa – cancerhttp://www.who.int/topics/cancer/en/

International Union for Cancer Control (UICC)http://www.uicc.org/

UICC’s members in 123 countries worldwidehttp://www.uicc.org/membership/list

NCD Alliance (non communicable disease alliance – chiefly can-cer, heart disease and diabetes)http://www.ncdalliance.org/

UN NCD Summit: Draft outcome document of the High-level Meeting on the prevention and control of non-communicable diseases http://www.ncdalliance.org/sites/default/files/resource_files/UN%20High-Level%20Summit%20Zero%20Draft.pdf

International Atomic Energy Agency’s Program of Action on Cancer Therapy (PACT – helps equip countries with radiotherapy capacity) http://cancer.iaea.org/Cancer Stigma and Silence Around the World: A LIVESTRONG Report http://www.livestrong.org/pdfs/3-0/LSGlobalResearchReport

AfrOx Africa Oxford Cancer Foundationwww.afrox.org

Arab Medical Association Against Cancerhttp://amaac.org/01.htm

International Network for Cancer Treatment and Research (builds capacity, among other things, for treating lymphoma in equatorial Africa and childhood leukaemia in India) http://www.inctr.org/

African Organisation for Research and Training on Cancer http://www.aortic-africa.org/

Wisconsin Pain and Policy studies group (statistics and informa-tion on global and national policies on pain relief and opioids for most countries in the world). http://www.painpolicy.wisc.edu/

The World Cancer Atlas (Reliable, interactive, well-presented information on cancer from a global perspective, on geographic burden, risk factors, prevention, early detection, treatments, advocacy and more)http://apps.nccd.cdc.gov/dcpcglobalatlas/

Cancer World Magazinehttp://www.cancerworld.org/Home.html

Euro-Arab School of Oncologyhttp://www.easoncology.org/

Cancer Resources for Journalists

41The Health Digest

ate housewives.

Now that I think about it, I remember my step sister having Kaposi sarcoma in 2009. I saw her once when what was left of her body could not even be fed to scavengers. A few days later after she died, I found out that for five years, she had never wanted to admit to being HIV positive. The best way for her to be in denial was not to take ARV’s. She died believing she had been attacked by cancer and that the doctors wanted to put her on machines which would killher. It is like she preferred cancer to HIV!

This made me detest cancer the more. Yes, maybe I should take her example of denial as a lesson but the Musoga in me will not(there is a stereotype going on about my clan mates being level headed, I’m beginning to believe it). Are there people who freak out like I do! I wonder!“The unknown is always to be feared”

“What you know not, hurts not” are sayings by which I live when it comes to breast or cervical cancer (I haven’t given much thought to other cancer types but all cancers are to be taken as the enemy). However, I tell all my friends to go for screening.Do not practice what you preach, works well for me.

BUT: I really believe I need to have those tests.

Florence Naluyimba <f.mujaasi@gmail.com> A health reporter with NTV.

Thank You so Much from the Managing Editor

Plot 156-158 Mutesa II Road, Ntinda P. O. Box 4883 Kampala -UGANDA

Tel: 256 704 292188 healthdigestUG@gmail.com Website: www.hejnu.com

Health DigestTHE

Friends,

Welcome to this second edition of the Health Digest, a quarterly magazine, written by journalists passionate about advancing the public and media understanding of health and the role that positive policy plays in the future of a healthy nation.

In this issue, we focus on cancer, which is killing more people than Malaria and HIV combined in Sub-Saharan Africa and more so in Uganda. What we have tried to do here is to add some voices for you out there hunting for Uganda cancer informa-tion on the Internet. It is not sufficient, certainly not at all. But we trust that as you read the magazine you send feedback which we shall put on our website www.hejnu.com.

We have tried to track the story of cancer in Uganda right from the time the Uganda Cancer Institute (UCI) was established in the 60’s and shown the strides Uganda has made with the Cancer Walk.

While we still face a challenge in acquiring content and pictures, we persevere with the voluntary contributions that we have and keep our doors open to new ideas, perspectives, opinion and thought-provoking pieces. Our next issue will focus on kidney disease and the issues related to it.

We are only just at the beginning of this journey through which we aim to educate and inform not only the public but also key figures and the media about early diag-nosis, treatment and advocate for policy that supports positive impact when it cones to treatment and access to medication.

Health Digest is currently only available online, however, should hard copies be re-quired, orders can be placed at a cost of Ushs 5,000 per copy. We also invite advertis-ers who wish to be a part of this imperative initiative.

We thank all members of the Health Journalists Network of Uganda (HEJNU) for their voluntary commitment through time and content but extend this invitation be-yond to individuals who have a story to tell and wisdom to share.

We welcome your input through mailing the editor at healthdigestUG@gmail.com or individual journalists whose emails are provided. We eagerly look forward wait for your stories in the next issue on kidney disease.