Staying Power:Closing The Adherence GapIn OsteoporosisA report highlighting the impact of lack of adherence to osteoporosis treatment inreal terms – the social, economic and financial impact to individuals, physicians, societiesand healthcare systems

There are many medically-proven treatments for osteoporosis.The International Osteoporosis Foundation (IOF) does notendorse or recommend any specific treatment. Such decisionsmust be made by the physician and patient.

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Contents

Foreword by the International Osteoporosis Foundation 2

Executive Summary 4

Lack of Adherence: The Current Situation 6

Lack of Adherence: A Global Issue 8

Implications of Failing to Adhere to Osteoporosis Treatment 9• Impact on the Individual 9• Impact on Society and Healthcare Systems 13

New Frontiers: Osteoporosis Management Beyond Diagnosis 16

Closing Statement from Professor Jean-Yves Reginster 18

Appendix: National Perspectives on a Global Problem 19

Further Information:

IOF Patient Societies 23

References 24

In 2005, IOF launched an investigation into the worrying lack ofadherence to osteoporosis treatment, publishing their findings in areport – The Adherence Gap: Why Osteoporosis Patients Don’tContinue with Treatment.

The report summarised the results of a survey among 500physicians and 502 women with osteoporosis, conducted acrossfive European countries (France, Germany, Italy, Spain and theUK). The research sought to understand the causes behind thedisturbing lack of patient adherence to bisphosphonatetreatments, and potential ways through which this problem canbe addressed. It highlighted that there is a serious and widespreadlack of communication between physicians and patients about theneed to stay on long-term treatment in order to effectively treatosteoporosis and reduce the risk of fractures.

Having raised awareness of the problem, the campaign to improveadherence has evolved. This report, which follows a year later,shows that lack of adherence is not simply a European problem buta global issue. Staying Power: Closing the Adherence Gap inOsteoporosis takes physicians, patients and all those with an interestin osteoporosis on the next stage of the journey, highlighting the realcost of this crucial issue by emphasising the personal, social,economic and financial implications that occur when so manypatients do not take their treatment for the long-term.

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Foreword by the InternationalOsteoporosis Foundation

We face a serious problem. Women and men whohave been prescribed osteoporosis treatment often donot continue with their treatment long-term. As aresult, they do not benefit from these medications,which have been proven to reduce the risk offractures.1 This ‘adherence gap’ poses significanthealth problems for people at risk of osteoporosis, andalso costs healthcare systems – both public and private– vast sums of money in wasted reimbursements.

In order to understand why the issues addressed inStaying Power are so important, we should reviewthe dynamics of osteoporosis.

Osteoporosis – which literally means porous bones –is a serious global health issue affecting a third ofwomen and one in five men over 50.2,3,4 Osteoporosis-related fractures can be fatal; in the UK, hip fracturescause as many deaths as breast cancer, andsignificantly more than gastric and pancreatic cancer.5

The statistics are staggering, and they are becomingincreasingly serious.

It is predicted that in the year 2050, the annualnumber of hip fractures will reach over 6 millionworldwide.6,7 Half of these fractures will occur in Asiawhere the incidence of osteoporosis is growing at analarming rate.6 In Europe, vertebral fracture rates areset to escalate by 70% by 2020.5

Since 1987, the International OsteoporosisFoundation (IOF) and its 172 member societies haveworked tirelessly to raise public and medicalawareness of the disease, so that more people withosteoporosis are identified and treated before theyexperience the devastating effects of fracture. As theonly worldwide organisation dedicated to fightingosteoporosis, we work with patients, physicians andpolicy makers to raise the profile and priorityaccorded to osteoporosis within national healthcaresystems throughout the world.

However, there can be no room for complacency andwe have new frontiers to tackle. A significantchallenge, faced by all involved in the management of

osteoporosis, is the lack of adherence to a treatmentregime. Failure to stay on therapy results in anincreased fracture risk and, if an individual sustains afracture, this can have a profound effect on qualityof life. Some positive steps have already been taken.Patient societies, for example, play a significant rolein helping keep patients on treatment, supported bythe medical profession’s increasing acknowledgementof the importance of ensuring swift diagnosis and theinitiation of appropriate treatment. However, thisimportant recognition by healthcare professionalsmay become jeopardised as up to half of people withosteoporosis stop taking their treatment during thefirst year.8,9

Osteoporosis is a treatable condition. Yet, we still livein a world where a third of women and one in fivemen over 50 suffer from osteoporosis,2,3,4 resulting in asignificant personal, social and financial burden.Much of the advocacy work undertaken by IOF isaimed at encouraging healthcare systems to reimbursemedications for people at risk of fracture, before theysustain their first break. However, although suchreimbursement is essential, if people with osteoporosisdo not stay on treatment, this initial outlay goes towaste. This situation should, and must, be addressedwith a renewed sense of urgency.

It is critical that we identify people with osteoporosisand initiate their treatment quickly. However, ourefforts must also focus on keeping patients on theirtreatment for the long-term. Staying Power: Closingthe Adherence Gap in Osteoporosis highlights theimpact of lack of adherence to osteoporosistreatment in real terms – the social, economic andfinancial impact to individuals, physicians, societiesand healthcare systems.

The adherence challenge will not be resolved unlesseveryone involved in the management and treatmentof osteoporosis works in unison, devising appropriatepractical solutions that can be implemented globally.

Only then can we truly help people with osteoporosisto stay on their treatment.

Dr Daniel NavidChief Executive Officer, International Osteoporosis Foundation

The lifetime risk of a woman dying from hip fracture complications is equal to her risk of dying frombreast cancer5

I have had osteoporosis for ten years andam urging all women in my situation toseek advice from their physician and localpatient group on how best to stay on theirtreatment. I am aware of the profoundimpact the disease can have on everydayactivities and while I have been fortunateenough to continue leading an active life,many women are not so lucky.

Adhering to treatment could mean avoiding a life of decreasedmobility, chronic pain and low self-esteem. I would like toemphasise to those people with osteoporosis who are findingstaying on therapy a challenge, that support is available. Ifphysicians, patients, families and support groups work together,we can help women to stay on treatment and reduce the burdenof fractures.

Britt EklandInternational Film Star

Osteoporosis fractures can be devastating. However, if we can worktogether to find solutions to the adherence issue, we can helpwomen stay on treatment and reduce the burden of fractures.

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Executive Summary

Lack of Adherence: “A worldwideproblem of striking magnitude”

Osteoporosis has the potential to impact on all ofour lives, whether as a patient, carer or taxpayer.Although taking regular treatment as prescribed(known as ‘adherence’) can reduce the risk offracture, many patients are struggling to taketheir treatment over a sustained period.Osteoporosis is a generalised skeletal conditionthat requires sustained therapy over a number ofyears in order to strengthen bones and reduce riskof fractures. However, the reality is that for thosewomen taking a weekly treatment, it is estimatedthat only half will still be taking treatment after12 months.8,9

Lack of adherence to osteoporosis treatment has amajor impact on costs to healthcare systemsglobally; over the course of a year, osteoporosiscosts health services in the European Union over34.8 billion.13

In 2005, the IOF report The Adherence Gap: WhyOsteoporosis Patients Don’t Continue WithTreatment explored this issue and concluded thatphysicians and patients have different perspectiveson adherence:

• Most physicians acknowledged they wantedtheir patients to take their treatment long-term –between ‘one year’ and ‘indefinitely’

• However, it seems this message is not beingcommunicated effectively - just over half of thepatients could not recall being told how long theirtreatment should last14

The Implications of the Adherence Gap:The impact on the individual

Avoiding the fracture cascadePeople who do not adhere to their treatment regimeare at an increased risk of fracture and, aftersuffering one break, they face an increased possibilityof additional fractures in a process referred to as the‘fracture cascade’.

Osteoporosis-related fractures can be fatalApproximately 25-30% of patients who suffer ahip fracture die within a year.17 Given theworldwide incidence of hip fractures is projectedto increase by 310% in men and 240% in womenby 2050,6 this will have a significant impact onlife expectancy, especially among the elderly.Vertebral fractures are also associated with anincrease in mortality.18

Osteoporosis-related fractures seriously impairpatient quality of life• For those who survive a hip fracture, less than

one third will regain their previous level of mobilityand over a third will require constant care19

• Compared to healthy people, patients who havesuffered two or three vertebral fractures aretwice as likely to experience problems with threeor more everyday activities, such as shopping,dressing or going to the toilet20

Beyond the initial physical disability of fracture,people with osteoporosis may also developpsychological problems, including a fear of fallingand general lack of confidence in their mobility.This can lead to social isolation, depression and anincreased dependency on family and friends.21

For example:

• In France, half of people with osteoporosis discontinuetreatment after one year and only a small proportionof patients take their treatment correctly11

• In the Netherlands, half of the patients on a weeklytreatment stop taking it within the first 12 months12

People who have suffered five or more fracturesare 10 times more likely to experience another15

In the six months following a vertebral fracture,people aged 50-54 years have a 30- to 50-foldincreased risk of suffering another16

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The Implications of the Adherence Gap:The impact on society and healthcaresystems

The socioeconomic impact of osteoporosis reachesbeyond the individual. The number of people withosteoporosis not adhering to their treatmentdirectly correlates to an increasing and unnecessaryburden on society and healthcare systems.

Direct costs associated with non-adherence are significantThe worldwide cost burden of osteoporosis is forecastto increase to a minimum of 3106 billion (US$131.5billion) by 205022 and, in women over 45,osteoporosis accounts for more days spent in hospitalthan many other diseases, including diabetes, heartattack and breast cancer.23

Despite this, osteoporosis still does not receive amajor financial focus from the governments ofmany countries and is not considered to be a majoreconomic burden.

Beyond ‘direct’ healthcare costs, osteoporosis-related fractures have a huge societal impactThose who have suffered a fracture may be unable toreturn to paid employment due to a reduction inmobility and independence, and family and friendsmay be required to give up jobs in order to provideongoing care. In some cases, family members will alsoneed to fund specialist care, significantly reducingtheir financial capacity to invest in broader societalactivities including education.

Next Steps

Recognising that there is a problem with adherence isnot enough. IOF is committed to making adherenceto treatment a priority by continuing to raiseawareness of the issue and working with patients andphysicians to develop practical solutions.

• Encouraging patients to stay on therapy mustbecome a focus for all those involved inosteoporosis management

• Healthcare professionals need to be armed withpractical solutions to help patients stay ontreatment

• Patients and physicians must be encouraged tocommunicate effectively so that patients understandthe benefits of their treatment and are motivated tokeep taking it for the long-term

“When I first found out I had osteoporosis, I found takingtreatment difficult and, as a result, ended up not taking anymedication at all. However, without the benefits oftreatment, I suffered several vertebral fractures which havehad a significant impact on my quality of life. Havingexperienced the painful effects of osteoporosis first-hand, Inow take my treatment as prescribed. Other people shouldnot go through the pain and inconvenience of fractureunnecessarily and I would therefore encourage them to learnfrom my experience. My advice is to take your treatment asinstructed by your doctor or pharmacist.”

Sophia Edlinger, osteoporosis patient, Austria

“In the UK, fractures cost the National Health Serviceover £1.7 billion (52.5 billion) each year, whichequates to £5 million (57.2 million) a day.24 Somethingneeds to be done to address this situation - it issimply not sustainable.”

Rose McIver, Osteoporosis Specialist Nurse, UK

“The direct costs of hospitalisations due toosteoporotic fractures in Switzerland are somewherein the region of 357 million Swiss francs (5228 million)annually.25 This level of financial outlay for a diseasethat is preventable must be tackled and rectified.”

Professor Kurt Lippuner, Switzerland

Annual direct costs of treating osteoporosis(US dollars):

Europe $17 billion (313.7 billion)

USA $30 billion (324 billion)

Canada $2 billion (31.6 billion)

This amount is similar in scope to the estimated$53.7 billion (343 billion) spent annually on globalforeign development aid5

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Lack of Adherence: The Current Situation

As is the case with many chronic diseases, theproblem of adherence to therapy has emerged as asignificant challenge to the successful managementof osteoporosis. Indeed the World HealthOrganisation (WHO) has recognised the extent ofthe problem of adherence with the formation of anAdherence to Long-term Therapies Project. The2003 WHO report exploring the topic highlightedthe adherence challenge as a “worldwide problemof striking magnitude”.10 For people withosteoporosis, the silent nature of bone loss meansthat, before experiencing a fracture, the perceivedrisk amongst patients is often not sufficient tomotivate them to comply with treatmentguidelines. This difficulty is compounded furtherby the fact that, in asymptomatic conditions, thebenefits of treatment are not immediately apparentor ‘visible’ and, as a result, patients do notconsider themselves in need of medication.26

Therefore, adherence to osteoporosis treatment islow, leading to an unnecessary burden on patients,physicians and society.

Bisphosphonates, the most commonly prescribedtreatment for postmenopausal osteoporosis, are wellestablished as an effective treatment option.27,28,29

However, the full benefits of these drugs can only begained by long-term adherence to a prescribedtreatment regime. Although it is generallyrecommended that patients stay on treatment for atleast two years, research among women taking dailyand weekly oral treatments has shown a worryinglack of adherence.

The Adherence Gap: WhyOsteoporosis Patients Don’t ContinueWith Treatment - Key Findings

In 2005, the IOF Adherence Gap report shed newlight on the extent of the problem. Among currentand lapsed bisphosphonate users, the report foundthat the majority of patients experienceddifficulties in taking their treatment.14 Whilewomen listed side effects and inconvenience-relatedreasons as the main barrier to staying on therapy, alarge number of physicians had a different view,most often citing ‘lack of patient understanding’ asthe reason for lack of adherence.14 Seventy percentof physicians acknowledged that they did not knowwhy so many patients spontaneously stop takingtheir bisphosphonate treatment.14

It is thought that one reason why so many women are notadhering to therapy is that they do not realise the benefits thatsustained treatment brings.

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It is thought that one reason why so many womenare not adhering to their treatment is that they donot realise the benefits that their treatment brings.While 90% of women viewed osteoporosis as aserious condition, over two thirds of patients werenot aware of the benefits of their treatment, in somecases wrongly believing that there were no benefitsat all.14 Coupled with the inconvenience of takingregular medication for an indefinite period of time,being unable to see and feel their treatment workingdoes not encourage women to stay on treatment.

The majority of physicians acknowledged theywanted their patients to remain on therapy long-term – between ‘one year’ and ‘indefinitely’ –however, just over half (51%) of patients couldnot recall being told how long treatment wouldlast.14 Women are more likely to be influenced tostay on treatment by positive motivating factors:27% of patients said that ‘knowing they weredoing something to help themselves’ was a primaryfactor in encouraging them to stay on treatmentlong-term.14

The majority of physicians stated that improvedtreatment regimens were key in the management ofosteoporosis, with 83% believing that treatmentadvances play an important role. The possibility ofless frequent dosing options was welcomed byphysicians and patients with 93% of physiciansstating that a change in dosing frequency would havea positive effect upon adherence to therapy.14

Recent research has revealed the magnitude of theadherence gap in Latin America. 91% of physiciansin Brazil feel that osteoporosis should be viewed as aserious condition and 73% perceive that pooradherence to treatment is a severe problem in theircountry. Whilst the majority of physicians (89%)believe that patients should stay on therapy long-term(between one year and indefinitely), they estimate thatonly half of patients are likely to stay on treatment asprescribed for one year or longer.

Over 80% of physicians agreed that regular follow-up with patients, better information on treatmentoptions and more convenient dosing options wereneeded in order to address the issue of pooradherence, and achieve progress in helping patientsand their families living with osteoporosis.30

“There are several key reasons why people withosteoporosis do not stay on their treatment.For example:

• Osteoporosis is an ‘invisible’ disease and there are no immediately obvious benefits from taking treatment

• Treatments for osteoporosis can sometimes beinconvenient: patients may have to fast before andafter taking their treatment and stay uprightafterwards for a specific length of time; intermittenttherapies may be helpful in overcoming thisinconvenience to a great extent

• There is no ‘quick fix’ – to strengthen boneseffectively, osteoporosis treatment generally needsto be taken for at least two years

• Poor communication between patient and doctor isa critical problem, and we need more frequent andlonger visits for improvement in this area”

Gülseren Akyüz, MD, Turkey

“Osteoporosis is a significant issue throughout LatinAmerica. Despite this, it is estimated that only onethird of patients with osteoporosis receive a diagnosisand, of those, only one in five receive any kind oftreatment.31 We need to ensure that people are notleaving themselves open to fracture by discontinuingtheir treatment before they have received any benefitfrom it, in order to reduce fracture rates and reducethe osteoporosis burden.”

SOBRAPCO, Brazilian Society of Osteoporosis

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Lack of Adherence: A Global Issue

After 6 months…• More than a fifth of patients stop taking their treatment32

After one year…• Less than half of patients taking a daily treatment are likely to continue on therapy32

• Approximately half of patients stop taking their weekly treatment by the end of the first year8,9

After two years…• Over two thirds of patients on a daily treatment are likely to have stopped taking their therapy11

1. FranceHalf of French patients discontinue osteoporosis treatmentwith bisphosphonates after a year11

3. GermanyNearly three-quarters of women on weekly treatment andjust over half on daily stop taking their treatment after onlya year34

2. CanadaAfter two years, up to a quarter of patients stop takingtheir treatment33

4. ArgentinaOnly half of patients are still taking their daily treatment afterone year and this drops to less than a third after two years35

5. SpainFor patients on daily treatment, up to a quarter stop takingtheir treatment after one year36

6. ItalyEven patients who have suffered a fracture stop takingtreatment: after six months, up to three fifths of patientson a daily and one in ten on weekly treatment abandontreatment37

7. United StatesOnly a third of patients on daily treatment and just underhalf on weekly treatment manage to stay on therapy8

8. BrazilPhysicians estimate that only half of patients will stay ontreatment after one year30

9. NetherlandsNearly two-thirds of women on daily treatment and almosthalf on weekly treatment abandon their medication afterone year12

12. UKOver three quarters of women on daily treatment and three fifths on weekly stop taking therapy after 12 months40

11. BulgariaOnly one in five patients on weekly and daily treatmentcontinue with therapy after a year39

10. PhilippinesRecent research revealed that doctors believe only half oftheir patients adhere to their osteoporosis treatment38

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Implications of Failing to Adhere toOsteoporosis Treatment

Discontinuing treatment, and the resulting increase inrisk of fracture, has a huge impact on a person’shealth, lifestyle and appearance, and also presents asubstantial societal and economic burden.

Impact on the Individual

Failing to take any medicines as prescribed can leadto ill health and a poorer quality of life.

Those who do not adhere to osteoporosis treatmentface a significantly greater risk of fractures.41,42,43,44

The most common osteoporosis-related fracturesoccur at the spine, hip and wrist.

The fracture cascade: following the first brokenbone, the likelihood of sustaining another fractureincreases dramatically. People who have sufferedthree or more fractures are 10 times more likely toexperience another break15, and younger men andwomen (aged 50-54) who have suffered a fracture intheir spine have a 30-50-fold increased risk ofsuffering another fracture in the next six months.16

Osteoporosis-related fractures can lead to fatality.Approximately 25-30% of patients who suffer ahip fracture die within a year17 and the lifetimerisk of a woman dying from hip fracturecomplications is equal to her risk of dying frombreast cancer.5 Vertebral fractures are also associatedwith excess mortality.18

Women who survive a fracture face ongoingchallenges to their general health and wellbeing. Aftera hip fracture, over 95% of patients require reparativesurgery and, of these, less than one-third will regainnormal functioning. A further third will have togive up independent living and need constant care.19

Hip fractures are invariably associated with chronicpain, reduced mobility, disability, and an increasing

degree of dependence.45

The impact of vertebral fractures isalso profound, causing women tosuffer back pain and disability andan increased risk of subsequentvertebral deformities.46,47

Vertebral compression fractures can lead to kyphosis– the so-called ‘dowager’s hump’ – resulting in lossof height, severe back pain, deformity andimpairment of lung function. Compared to healthypeople, those who have suffered two or threevertebral fractures are twice as likely to experienceproblems with three or more daily activities (such asbathing, dressing and using the toilet).20

In addition to the physical impact, kyphosis presentsa number of practical problems. For example, findingwell-fitting clothes, reaching high shelves and drivingcars can all become difficult, if not impossible. Whenviewed alongside the associated pain, disfigurementand loss of independence, it is not surprising thatkyphosis can have a major psychological impact andlead to an increased risk of depression.48

For people with osteoporosis, especially if theyhave broken a bone, experiencing a fall cangenerate an overwhelming fear of further falls anda loss of confidence in being able to move aboutsafely. The resulting lack of mobility can lead tosocial isolation and loneliness, depression and anincreased dependency on others.21

Reduced mobility and increased dependence mayrequire alterations to the home to improve patientquality of life and ensure safety, which can be bothcostly and demoralising for the individualconcerned. Those unable to live independently,may be forced to move to a care or nursing home –potentially at a much younger age than wouldotherwise have been necessary.

“It is predicted that the elderly population ofIndonesia will increase significantly in the next 19years and, as a result, osteoporosis will develop intoan even greater burden. Osteoporosis-relatedfractures can lead to loss of confidence,independence and even life. Anything that can bedone to reduce the chance of a fracture happeningshould be encouraged. Identifying women who arenot staying on their therapy is one way in which wecan help reduce the fracture burden.”

Professor DR. Ichramsyah A. Rachman, SpOG-K, Chairman of PEROSI – Indonesian Osteoporosis Society

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Non-adherence to osteoporosis treatments: potential patient impact

Patients do not adhere to prescribed osteoporosis treatment

Lower gains in bone mineral density (BMD), smaller decreases in the rate of bone turnover and greater risk of fracture

Fracture may occur and higher risk of re-fracture

For example, compressed vertebral fracture For example, hip fracture

Surgery, chronic pain and disability, hospital costs Surgery, chronic pain and disability, hospital costs

Dowager’s hump: ill-fitting clothes, unable to reach highplaces or drive, protruding abdomen, shortness of breath,

loss of independence and working hoursLoss of independence, constant care, reduced mobility

Vertebral fractures increase the risk of mortality18 25-30% of hip fractures can lead to death17

Fortunately, the prevalence and impact of fracturescan be greatly reduced if patients take theirtreatment as prescribed and for the required lengthof time. Treatment reduces the risk of vertebralfractures by up to 65% and of non-vertebralfractures by up to 53%.1 Patients who are persistenton their bisphosphonate treatment reduce their riskof hospitalisation for osteoporosis fractures by 20 -30%.49 The protective effect is highest (30%) inpatients who use bisphosphonates consistently formore than one year.49 If adherence is improved, thenegative impact on an individual’s health andlifestyle, as well as that of their friends, relatives andcarers, can be reduced greatly.

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Fractures are increased as a result of suboptimal adherence

* Inconsistent use defined as early discontinuation or self-reported taking of therapy <80% of the time over the follow-up intervalReproduced from Sebaldt et al (2004)41

■ Consistent bisphosphonate users ■ Inconsistent bisphosphonate users

33% greater fracture rate in inconsistent* users1.5

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* Persistent = <6 months on therapy (no gaps >30 days in medication supply) during the 24-month follow-up periodReproduced from Gold et al (2005)50

26% decrease in fracture risk (p=0.047 vs non-persistent users)6

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Data from Siris et al (2005) suggests that if we could encourage our patients tocomply with their bisphosphonate regimen at least 80% of the time then theirfracture risk may be reduced by a quarter.51

Why Don’t Patients Stay on Treatment? (Adapted from Sambrook, 2006)52

Osteoporosis: the impact on my life

“I discovered I had osteoporosis at the age of 53, which finally gave me an answer to why Ihad endured a broken wrist and compressed fracture in my spine. Although my experience as anurse made it easier to accept I have osteoporosis, it has still had a huge impact on my life.

I have lost almost 13cm in height and I now find buses too difficult to use and have had to buynew clothes to fit my change in size and shape. My leisure activities have also been affected – Iused to enjoy brisk walks and dancing but I am now afraid of suffering another spinal fracture.However, I recognise that this risk is reduced if I keep taking my medicine – this way, I know Iam doing something to help myself.”

Freda Ross, osteoporosis patient, UK

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Impact on Society & Healthcare Systems

The economic impact of osteoporosis-relatedfractures includes both direct (impacting onhealthcare systems and patients) and indirect (usuallynon-medical) costs.

Most countries (excluding the US) allocate less than10% of their gross domestic product (GDP) tohealthcare for all disease areas.53 As the consensus

definition of osteoporosis was only established in1994, it often does not receive a strong financialfocus in many countries and is not regarded to be amajor burden to society. However, the cost ofosteoporosis-related fractures worldwide is extremelyhigh, with the true cost thought to be higher thanestimated calculations, as a large number of peoplewith osteoporosis are not diagnosed.5 In 2000,Europeans suffered an estimated 3.79 millionfractures amounting to direct costs in the region of331.7 billion.54 The worldwide cost burden is forecastto increase to a minimum of US$131.5 billion (3106billion) by 2050.22

In women over 45, osteoporosis accounts for more daysspent in hospital than many other diseases, includingdiabetes, heart attack and breast cancer.23

Estimated economic impact of osteoporosis-related fractures

1. UKAnnual cost of osteoporotic fractures is between 32.2 -32.6 billion (£1.5 - £1.8 billion)24

5. Spain25,000 fractures occur each year, resulting in direct costs ofmore than 3126 million and indirect costs of 3420 million56

2. FranceMedian in-patient costs of 33,786 for humerus fractures,from 32,363 to 32,574 for radius fractures and from 38,048to 38,727 for fractures to the hip55

6. SwitzerlandAnnual direct medical cost of hospitalisation of patientswith osteoporosis and/or related fractures is approximately3228 million (357 million Swiss francs)25

3. AustraliaMusculoskeletal disorders amount to an estimated totalexpenditure of 31.8 billion (AUS $3 billion)58

7. USADuring 2001-2003, an estimated 2.39 million osteoporosisfractures occurred, resulting in government healthinsurance costs of 310 billion (US$13 billion)59

4. SwedenThe direct cost - care in hospitals, community, primary care- for osteoporosis-related fractures is 3331.6 million (3.1billion SEK)57

8. BrazilOver half of physicians questioned in recent market researchestimated the annual cost of treating osteoporosis-relatedfractures to be in excess of 381 million (US$100 million)30

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“Osteoporosis is a significant problem in Spain and, as is thecase in many other countries, lack of adherence to treatment isa major challenge. Typically, patients receive treatmentfollowing a fracture but, even then, treatment is not alwaysgiven as a matter of course. As physicians, we need to ensurethat we identify patients, get them on a treatment and makesure they stay on it to ensure fractures (and the related costs)are kept to a minimum. We believe this may significantly relievethe burden on society and healthcare systems.”

Dr Jorge Cannata, Spain

The Patient’s Perspective

“Bones are taken for granted unless they break - we don’tthink about them and just expect them to always be there.When you are given the news that your bones are fragile andtheir density is not as great as it should be, it can be verydepressing. However, through the Melbourne OsteoporosisSupport Group, help is available and we also encouragepeople to seek advice from their doctor if they feel they areat risk of osteoporosis.”

Beryl Logie, Osteoporosis patient and President of the MelbourneOsteoporosis Support Group

The Physician’s Perspective

“Osteoporosis is considered a major public healthproblem in Australia; someone is admitted to hospitalwith an osteoporosis-related fracture every eightminutes and this rate is projected to increase in thefuture.58 In addition to this, it is recognised thatadherence to a prescribed therapy is only moderate.Any way of improving adherence in the long-term willlead to a decrease in fractures and better outcomes.”

Professor Phil Sambrook, Australia

Beyond ‘direct’ healthcare costs, those who havesuffered a fracture (and have reduced independenceand mobility) may be less able to undertake paidemployment. They may also rely on friends andrelatives to provide ongoing care and to assist witheveryday tasks such as shopping and travelling. Thisplaces a further strain on society – families loseworking days to care for loved ones, the emotionalburden can be immense and the financial impactsignificant. Relatives may also need to find funds forcare home costs – reducing the amount they canspend on, for example, education or housing.

Direct Indirect

Prolonged hospital stays

Loss of working days resulting in compensationand health claims

Hospital treatment

Hospital staff and community care

Loss of productivity

Exposure to hospital-related illnesses/infections

Transporting patients to and from hospitals

Costs to train new staff

Hip replacements

Loss of relatives’ and friends’ working days/productivity

Long waiting lists to receive treatment

Costs of adapting lifestyle (for example, alteringclothes to accommodate change in body-shape oradapting house-fittings to be safer and easier to use)

The impact of osteoporosis-related fractures

Effective osteoporosis treatments are available,offering real value to healthcare payers, providers andpatients. However, medicine that is prescribed butnever taken cannot be effective and will have noimpact on the significant personal, social andeconomic burden presented by osteoporosis. Only iftreatment is taken as it should be, and for a sufficientlength of time, will we start to see real returns ondrug-cost investment. Therefore, it is essential thathealthcare professionals, policy makers, patients andthe groups that represent them, work in alignment toimprove adherence to osteoporosis treatments.

“The direct consequences of non-adherence, including medicaland social complications, patient quality of life and thewasted cost of prescriptions that are never filled, impact theability of healthcare systems to achieve disease and treatmentgoals. Optimising adherence to osteoporosis treatments willoffer substantial economic benefits.”

Professor Dr. Heinrich Resch, President of the German Society of Osteology

15

“Current information demonstrates that lack ofadherence to osteoporosis treatments is a worldwideproblem and the financial costs associated with womennot staying on their osteoporosis treatment are huge.However, there is still a wide variation in the data thatare available in different countries and regions andadherence levels are still not being routinely measuredand monitored. Until this happens, we will be unable totruly establish the magnitude of the adherence issue,assess the needless suffering among patients, andcalculate the unnecessary financial burden to globaleconomies. This further highlights the need for anincreased focus on determining the extent of this issueand the means of addressing it.”

International Osteoporosis Foundation

According to one model, if a 62 year oldwoman with osteoporosis is treated for fiveyears with a medication that costs US$830/year and produces a 50% reduction infracture rate, the cost per hip fracture avoidedamounts to US$48,600 (739,000)

The cost per life saved is US$30,600 (724,600)

The cost per quality-adjusted life year isUS$14,900 (712,000)22

It is essential that patients and all those involved in themanagement of osteoporosis work in alignment to improveadherence to osteoporosis treatments.

16

New Frontiers: OsteoporosisManagement Beyond Diagnosis

Much has been achieved in ensuring that womenare being diagnosed and initiated on treatment fortheir condition earlier, more effectively and ingreater numbers. However, the issue of lack ofadherence remains. If patients stop treatmentbefore they have acquired any real benefit, muchof the work done in diagnosing them becomesredundant. The important efforts made byphysicians, and the awareness-raising work carriedout by patient organisations, are negated and thesignificant investment in drug costs is wasted.

Adherence to osteoporosis treatments is not onlyfundamental to the bone health and general wellbeingof those who have osteoporosis, it is vital in ensuringthat healthcare costs are reduced and the economicburden on society alleviated. If the pattern ofwomen stopping treatment continues, fracture ratesand associated costs could increase exponentiallythroughout Europe and the rest of the world.

Finding the Solution: First Steps Towards Tackling theAdherence Problem

It is vital that women are not only prescribedtreatment, but are also encouraged to keep taking itfor as long as required in order to build bone strengthand avoid future fractures. Improving adherence mustbe made a priority in the management of osteoporosis.

As a first, basic step patient groups, healthcareprofessionals and governments must commit toaddressing this major issue, to ensure theproblem is tackled as effectively as possible. Intheir 2003 report Adherence to long-termtherapies: evidence for action, the WHOidentified that healthcare professionals need tobe trained in adherence and a coordinated, multi-disciplinary approach from medics, researchers,health planners and policy makers would also beneeded to address the problem.10

The other short-term step towards addressing theadherence problem is to identify those who are notstaying on their treatment in order to help themresume a regular regime. People with osteoporosisshould be encouraged to come forward and feelable to discuss the difficulties they face in takingtreatment for a long period. In addition, physicians,patient groups and carers can all offer support bydiscussing adherence with osteoporosis patients, byasking the right questions and by increasing theirown understanding of what it means to take long-term treatment for a chronic condition.

IOF is committed to working with our affiliatednational patient groups across the world to combatinadequate adherence to osteoporosis treatment.For example, we will continue to liaise withnational patient groups to explore practicalsolutions to help patients stay on treatment for aslong as required to reap the benefits. Depending onthe local situation, solutions vary from country tocountry but the goal remains the same: to developpractical suggestions that can be implemented in areal-life setting.

“There have been a number of significant advances inosteoporosis treatment in recent years. However, improvingpatient adherence to treatment has the potential to have a fargreater impact in tackling this widespread and serious disease.”

Dr. Tito P. Torralba, Philippines

All patients are at risk of stopping treatment.However, those experiencing the followingsituations may be at an increased risk:

• Patients taking multiple medicines fordifferent diseases at the same time

• Patients who are treated with medicinesthat involve complex and frequent dosing schedules

• Patients who lead a busy life

• Elderly patients who are less able to self-medicate

• Patients who live alone or suffer a lack ofsocial support

• Patients who are in denial about their condition

• Patients who suffer side-effects as a resultof their treatment

17

There are many factors we need to consider in orderto address the adherence challenge. For example, arecent IOF survey conducted in 2005 with 502women with osteoporosis and 500 physiciansrevealed that women are motivated to stay ontreatment by positive factors such as ‘knowing theyare doing something to help themselves’. 70% of thephysicians involved thought regular clinics andaudits would be helpful to reduce the numbers ofpatients discontinuing treatment and 75% felt dosingfrequency had a strong influence on a patient’slikelihood to stay on treatment.14

Evidence shows that accommodating patients’preferences and beliefs when selecting treatmentimproves their adherence levels and, ultimately, theirtreatment outcomes.60 Experience also suggests thatpeople with chronic diseases can work together toimprove adherence to therapy10 and many IOFmember societies run helpful support groups. Forexample, certain areas of Canada have establishedsupport groups run by volunteers who are alsoosteoporosis patients themselves and, therefore,understand the personal impact of diagnosis andtreatment.61 Also, health professionals in varyingdisciplines, particularly nurses and pharmacists, playa major role in understanding patient needs andhelping patients stay on treatment.

Some initial suggestions on how to tackle theadherence challenge, with advice for both patientsand physicians can be found at:www.osteofound.org/stayingpower

More needs to be done to establish some definitive,relevant and meaningful methods of ensuringpeople with osteoporosis stay on their therapy. Arange of approaches may be required – and,undoubtedly, different tactics will be adopted tosuit the needs of different countries and acrossdifferent world regions.

The scale and scope of the adherence challenge, andits genuine implications for people around the world,cannot be ignored. The weight of this informationshould not be seen as a burden – rather, it providesthe ‘kick-start’ needed to develop practical andrealistic solutions to the growing, yet to a great extentavoidable, impact of osteoporosis.

“Adherence is an important issue, not only in Europe but acrossthe world. As the number of people with osteoporosis rises, theneed to tackle this problem will become even more pressing.Action for Healthy Bones is committed to helping identify andprovide support for people who find it difficult to stay ontheir osteoporosis treatment.”

Action for Healthy Bones, Austria

It is thought that “the development of drugs with few sideeffects and easy, or easier, administration routes or regimenswould promote intentional adherence. It has been found, acrossa range of therapeutic areas, that adherence with medications isinversely related to frequency of dosing”.32

Professor Jean-Yves Reginster, Future Rheumatology 2006

“In Italy, lack of adherence to osteoporosis therapyis a serious problem. Osteoporosis is not consideredas a chronic disease by our health system andtherapy is reimbursed only in selected cases, typicallyafter the patient has experienced their first fracture.Therefore, osteoporosis is often not perceived as asevere disease by those at risk, and even somephysicians do not emphasise the need for strictadherence to long-term therapy. Lega ItalianaOsteoporosi is committed to raising awareness thatstaying on treatment is important and encouraginghealthcare professionals and patients to worktogether to find practical, long-term solutions toaddress this important problem.”

Lega Italiana Osteoporosi

18

Closing Statement

There was a time when the medical world neglectedto give osteoporosis the attention it deserved as aserious disease area. Thankfully, awareness hasincreased and we are continuing to make progress inthis area. However, if we do not address the issue oflack of adherence then we may still be neglecting thewelfare of millions of women around the world.

It is not enough to simply recognise lack ofadherence as a problem. Although awareness isimportant, steps need to be taken to identify womenwho are not adhering to their osteoporosis treatmentregime and putting themselves at increased risk offracture, which, in the worst cases, can lead to long-term hospitalisation or death.

If women are finding adherence to treatment achallenge, they must be encouraged to understandthe significance of discontinuing therapy and seekhelp, advice and support that will make it easier forthem to do so. Physicians need to be even morevigilant in monitoring patients. Friends and familymembers also have a role to play in improving theirawareness of the adherence problem and asking theright questions. If we can focus our collectiveefforts on finding solutions to the adherence issue,we can help women stay on treatment before theirbones weaken further.

Incidence of osteoporosis is rising. If we are toensure that fracture rates - and the associatedpersonal and social effects and costs - do not increasein parallel, we need to be sure these women are notoverlooked. Difficulties with staying on therapy canbe addressed but only if we encourage women tospeak out, seek assistance and expect to receive it.

Patients are more motivated to stay on treatmentwhen they are given positive and clear messages fromtheir physicians, focused on the benefits of treatmentrather than the risk of fracture. People withosteoporosis also need the support of empathetic andwell-trained healthcare professionals, as well as thesocial and psychological support of patient supportgroups. Less frequent dosing options may prove moreconvenient for patients. All told, the situation can beimproved, and progress is being made. By workingalongside people with osteoporosis, we can give themstaying power and help make lack of adherence achallenge of the past.

Professor Jean-Yves ReginsterProfessor of Epidemiology, Public Health and Health Economics,University of Liege, BelgiumGeneral Secretary of the InternationalOsteoporosis Foundation

Appendix: National Perspectives on a Global Problem

19

This appendix provides an overview of osteoporosis, its prevalence and management in different countries.The information outlined below represents a collation of facts and statistics adopted from a variety ofsources – principally clinical papers and national patient society websites – and is intended to illustrate thesimilarities and differences in national approaches to the global problem of osteoporosis. Furtherinformation can be found through the national patient organisations.

Country

Australia

Prevalence

• In 2001, nearly 2 millionAustralians had osteoporosis-related conditions52

• Osteoporosis is extremelycommon, and is more prevalentthan high cholesterol, allergies orthe common cold58

Emotional and FinancialCost

• Osteoporosis poses a significantcost burden with musculoskeletaldisorders ranked as the thirdleading cause of health systemexpenditures58

• The estimated total expenditurewas AU$3.0 billion in 1993-94,behind circulatory and digestivediseases (each about AU$3.7billion)58

• In 2001, musculoskeletal disordersrepresented 1.2% of grossdomestic product (GDP) orAU$389 for every Australian58

• There is over AU$1 billion lost inpotential tax revenue because ofthe disease58

• Despite being more expensive tomanage than diabetes or asthma,osteoporosis is not ranked withthese conditions as a nationalhealth priority58

• Osteoporosis poses a seriousimpairment to quality of life: in2000-01, osteoporosis costAustralians 25,000 years ofhealthy life58

• Over half of these years were lostdue to premature death, and theremainder from the disabilityburden of the disease58

• More years of healthy life are lostin Australia due to osteoporosisthan to Parkinson’s disease,HIV/AIDS, rheumatoid arthritis orcervical cancer58

Projections for theFuture

• By 2021, it is thought 3 millionAustralians will be affected byosteoporosis-related conditions,leading to a fracture every threeand a half minutes58

Further Information

• Diagnosis is based on DEXAscanning to measure BMD levels.However, as BMD measurementsare only reimbursed every otheryear, patients may suffersignificant unchecked bone lossduring this two year gap58

• Ultrasound techniques can also beused to measure bone stiffness,although more research is requiredin this area58

• Osteoporosis is not a healthpriority for Australian women. Ofthose who participated in a recentsurvey, only 15% were aware theywere at risk prior to diagnosis ofosteoporosis and only 12%regarded osteoporosis as theirmain health concern62

Brazil • In one study analysing the cost ofhip fractures, there were 129,611patients diagnosed withosteoporosis and the incidence ofhip fracture was almost 5% inwomen.63 However, the true burdenis likely to be much higher as thesefigures only account for theBrazilian private healthcare system

• Despite this, just one in three arediagnosed as having osteoporosisand, of those, only one in fivereceive any kind of treatment31

• The mean length of hospital stayafter a hip fracture is 9.21 days63

• The economic burden ofosteoporosis hip fractures to privatehealth plan companies in Brazil isestimated in the region of R$12million63

• Despite the risks, almost threequarters of physicians believe lackof adherence is a severe problemin Brazil30

• Physicians estimate that only halfof patients will stay on treatmentafter one year30

• However, almost 70% stronglyagree that less frequent dosingand more convenient treatmentscould help patients to stay ontherapy30

20

Country

France

Prevalence

• Postmenopausal osteoporosisaffects more than 3 millionwomen in France64

• The fracture burden of osteoporosisis significant; it is estimated thatover five years this group ofwomen will collectively experiencea total of 38,000 hip fractures,186,000 vertebral fractures and55,000 wrist fractures as a result ofthe disease64

• During 2001, 118,839 osteoporosis-related fractures were registered(61% hip, 28% distal radius and11% proximal humerus)55

Emotional and FinancialCost

• In 2001, the median in-patientcosts of osteoporosis-relatedfractures per patient were:- Humerus: 33,786- Radius: 32,363 to 32,574- Hip: 38,048 to 38,72755

Considering the number offractures estimated to occur, thesecosts will amount to a significantcost burden

Projections for theFuture

• In 2004, the French governmentmade osteoporosis one of thenational health priorities, seeking a10% decrease of femoral neckfractures by 2008 and a 25%decrease in falls in over 65s65

Further Information

• In a recent French study ofosteoporosis patients, 97.3%were treated for the disease,among them 80.6% withbisphosphonates and 18.1% withSERMs66

• In terms of aiding diagnosis,personal and family history ofosteoporosis-related fracture havebeen identified as common riskfactors66

• Almost two thirds of women havea diagnosis of osteoporosis basedon a previous fracture67

Finland • Approximately 400,000 Finnishpatients have been diagnosed assuffering from osteoporosis68

• It is estimated that treating a hipfracture costs in the region of3633569

Germany • Over 5 million people in Germanysuffer from osteoporosis70

• For older women the disease isparticularly prevalent: they are fivetimes more likely to be affectedthan men and, after 75 years,over half of women are affectedby osteoporosis71

• Only 30% of patients withosteoporosis receive treatment inGermany,72 contributing to anincreased fracture risk

• Osteoporosis is one of the mostexpensive illnesses to treat and itscost is comparable to diabetesand heart disease71

• Despite its prevalence,osteoporosis prevention is notcovered by health insurance72 andtreatment is estimated to amountto at least 35.4 billion per year71

• Osteoporosis management isfurther compromised asreimbursement of the diagnostictest DEXA, is limited to patientswith a history of fracture72

• The number of German peoplewho suffer from osteoporosis is setto increase with experts predictinga doubling in the next 40 years70

India • A recent study among Indianwomen aged 30-60 from lowincome groups found almost a third(29%) had osteoporosis73

• BMD scores for these women weremuch lower than those found indeveloped countries, thought to bedue to inadequate nutrition73

• It is predicted that India mayexperience the occurrence of hipfractures in endemic proportions,whilst also having to cope withadditional problems such asmalnutrition and infectiousdiseases73

• Research shows that osteoporosis-related hip fractures occur at amuch earlier age among Indianmen and women of low socio-economic standing compared toWestern regions73

Italy • It is thought that approximately50% of women and 15% of menwill develop osteoporosis74

• Approximately 1 in 4 women and 1in 20 men will suffer a vertebralfracture74

• Physicians saw approximately 1.2million patients with osteoporosisthroughout 2004, 1.1 million ofwhom were given treatment75

• 90% of patients with osteoporosisare female75

21

Country

Netherlands

Prevalence

• Over 800,000 people suffer fromosteoporosis in the Netherlands,contributing to 15,000 hipfractures, 16,000 vertebralfractures and 40,000 otherfractures per year76

• However, despite the prevalence,only one in three vertebralfractures receive clinical attentionfrom a physician76

Emotional and FinancialCost

Projections for theFuture

Further Information

• As is the case in many countries,osteoporosis is under-diagnosed.80% of people with osteoporosisdo not realise they have thecondition and are not given anytreatment76

• Despite this, treating osteoporosiswith appropriate treatment candecrease the chance of fractureby up to 50%76

• Lack of adherence is a challengefor successful treatment. Afteronly one year, up to 65% ofwomen on a daily treatment andalmost half on a weekly treatmentabandon their medication12

Philippines • Recent research revealed thatwomen at risk of osteoporosisneed to be informed about thedisease as many believeosteoporosis to be caused by badposture or confuse it withrheumatism or osteoarthritis77

• Recent research revealed womenwith osteoporosis who sufferedfrom concomitant conditions oftenprioritise taking medication forthese other conditions over takingtheir osteoporosis treatment77

• Doctors interviewed in a parallelstudy concluded lack of awarenessof the complications andseriousness of osteoporosis as themain reason for non-compliance38

Spain • 3 million people in Spain haveosteoporosis,78 affecting almost onein three of women over 50 andmore than half of women over 7079

• Osteoporosis poses a significanteconomic burden for Spanishhealth authorities:- The total cost of diagnosis and

treatment is 3600 million- 25,000 fractures occur each year,

resulting in direct costs of morethan 3126 million and indirectcosts amounting to 3420 million56

• Importantly, osteoporosis fracturescan be fatal: after three months,13% patients who have suffereda fracture die; this figure rises to38% after 24 months56

• After experiencing a vertebralfracture, 45% of patients sufferfrom functional damage and halfare afflicted by partial or totaldisability,56 highlighting the truesocial burden of the disease

• Greater efforts need to be madeto identify and treat those at risk:only 18% of the 3 million peopleliving with osteoporosis have beendiagnosed with the disease78

Sweden • One in three women aged between70-79 have osteoporosis57

• The annual incidence ofosteoporosis-related fractures isapproximately 70,000, of which18,000 are hip fractures57

• The direct economic burden ofosteoporosis-related fractures is asfollows:- Care in hospitals 1.6 billion SEK- Outpatient care 177 million SEK- Social services 1 billion SEK57

• Indirect costs amount to 440million SEK57

• Hip fractures are associated withincreased mortality: one year afterfracture, mortality is 10-15%higher in those who have suffereda fracture compared to those whohaven’t57

22

Country

Switzerland

Prevalence

• Osteoporosis contributes tosignificant health costs. A recentstudy concluded that osteoporosis-related fractures in womenconsumed more healthcareresources than chronic pulmonaryobstructive disease (COPD), stroke,breast cancer and heart attack25

• In 2000, there were 62,535fracture-related hospitalisations inSwitzerland (35,586 women and26,949 men)25

Emotional and FinancialCost

• In 2000, 24% of all fracturehospitalisations were consideredrelated to osteoporosis, amountingto 87,100 hospital days with 13.5days the average length of stay25

• The annual direct medical cost ofhospitalisation of patients withosteoporosis and/or relatedfractures is approximately 357million Swiss francs25

• In 2000, osteoporosis and itscomplications were the leadingdrivers of direct medical costsrelated to hospitalisation inwomen and were comparable tomyocardial infarction in men25

Projections for theFuture

• In 2004, it was predicted that, ifcurrent prevention and treatmentpatterns are maintained, theincidence of osteoporosis-relatedhip, vertebral and forearmfractures will rise by 33%, 27%,and 19%, respectively, between2000 and 202080

Further Information

• Lack of awareness of the diseaseand its consequences preventswidespread use of drugs with anti-fracture efficacy thereby limitingtheir potential to reduce costs25

UK • It is estimated that three millionpeople in the UK haveosteoporosis and that someonewill suffer from a fracture due toosteoporosis every three minutes81

• One in two women and one infive men will suffer a fractureafter the age of 5081

• Osteoporosis-related fractures posea significant problem in the UK:every year, British patients suffer anestimated 41,000 wrist fractures,25,000 symptomatic vertebralfractures and 70,000 hip fractures24

• Fractures in the UK cost the NHSbetween £1.5 and £1.8 billioneach year24

• The economic burden ofosteoporosis-related fracturesincludes not only the primaryacute hospital costs (radiography,surgery, physiotherapy, treatmentsetc.), but also post-acute socialcare costs and additional use ofhealthcare services82

• Osteoporosis-related fractures canalso be fatal with hip fractures in theUK causing as many deaths asbreast cancer, and significantly morethan gastric and pancreatic cancer5

• Bisphosphonates are recommendedas treatment for secondaryprevention of fractures but only for:- Women aged 75 or over- Woman aged 65-74 who have

been confirmed as havingosteoporosis by DEXA scan

- In women under 65 who havelow BMD or are identified asbeing at risk from osteoporosis,by an agreed list of risk factors24

• As a result, it has been estimatedonly 10-20% of UK women withosteoporosis receive treatment forthe condition24

• Despite the social, personal andeconomic implications, in studieslooking specifically at how longpatients remain on treatment,approximately 50% of patients ona weekly bisphosphonate havestopped taking it by the end ofthe first year8,9

USA • More than 1.5 million Americansexperience osteoporotic fractureseach year (700,000 vertebral,250,000 forearm, 250,000 hipand 300,000 other fractures)83

• In 2002, the direct cost oftreating osteoporotic hip fractures(hospitals and nursing homes) wasUS$18 billion and this amount ispredicted to rise84

• By 2010, approximately 12 millionpeople over the age of 50 areexpected to have osteoporosisand another 40 million to havelow bone mass84

• A recent study predicted thatBMD testing of an additional 1million US women would prevent35,000 fractures over three years,producing insurance savings ofUS$77.9 million59

23

IOF Patient Societies

The IOF membership comprises 172 nationalosteoporosis societies in 85 countries. To contact anIOF member society in your country, please visitwww.osteofound.org

As well as supporting medical research and undergoinglobbying activities, IOF member societies also provide anumber of services specifically for patients. Forexample, many run help lines, provide patient supportgroups or publish magazines that offer informationand support on all aspects of osteoporosis.

24

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49 Goettsch WG, Penning F, Erkens JE, Lynch NO, Novak A and Herings MC. Persistent Bisphosphonate Usage Reduces the Risk of Hospitalizations forOsteoporotic Fractures. Journal Bone Miner Research 2005; 20 (Suppl. 1):S278 (Abstract SU388)

50 Gold D, Cosman F, Frytak J, Baran R, Amonkar M and Martin B. Persistence With Bisphosphonate Therapy and Fracture Risk in Postmenopausal Women in aManaged Care Environment. Journal Bone Mineral Research 2005; 20 (Suppl.1): S399 (Abstract M362)

51 Siris E, Rosen CJ, Silverman S, Abbott TA, Barr CE and Harris ST. Greater adherence to bisphosphonate therapy is associated with greater fracture risk reductionin postmenopausal women. Journal Bone Mineral Research 2005;20 (Suppl.1): S282 (Abstract SU403)

52 Sambrook P. Compliance with treatment in osteoporosis patients: an ongoing problem. Australian Family Physician 2006; 35 (1/2): 1-3

53 World Health Organisation. Prevention and management of osteoporosis. WHO Technical Report Series 921. Geneva (Switzerland): 2003

54 Kanis JA, Johnell O. Requirements for DXA for the management of osteoporosis in Europe. Osteoporosis International 2005;16: 229-238

55 Maravic M, Le Bihan C, Landais P and Fardellone P. Incidence and cost of osteoporotic fractures in France during 2001. A methodological approach by thenational hospital database. Osteoporosis International 2005; 16 (12): 1475-1480

56 Gimeno A, Guañabens N, Monegal A and Peris P. Consulta de... osteoporosis. Prous Science. Barcelona (Spain): 2005

57 The Swedish Council on Technology Assessment in Healthcare (SBU). Summary and conclusions of the SBU report on osteoporosis – prevention, diagnosis andtreatment: a systematic literature review. Stockholm (Sweden): 2003

58 Access Economics Pty Ltd. The Burden of brittle bones: costing osteoporosis in Australia. Canberra (Australia): 2001

59 King AB, Saag KG, Burge RT, Pisu M and Goel N. Fracture reduction affects Medicare economics (FRAME): impact of increased osteoporosis diagnosis andtreatment. Osteoporosis International 2005; 16: 1545-1557

60 Unson CG, Siccion E, Gaztambide J, Gaztambide S, Mahoney Trella P and Prestwood K. Non-adherence and osteoporosis treatment preferences of older women: aqualitative study. Journal of Women’s Health 2003; 12 (10): 1037-45

61 Ormerod K and Ade M. Summary and recommendations of patient support workshop. Presented at IOF Worldwide Conference of Osteoporosis Patient Societies;2005 September 27-30; Bangkok, Thailand

62 Osteoporosis Research in partnership with International Osteoporosis Foundation. How fragile is her future? A report investigating the current understanding andmanagement of osteoporosis around the world today. 2000

63 Araujo DV, Oliveira JAH, Bracco OL. Custo da fratura osteoporótica de fêmur no Sistema Suplementar de Saúde Brasileiro. Arq Bras Endocrinol Metab 2005; 49(6):897-901

64 Cortet b, Gaudin AF, Cotté FE, Lafuma A and El-Hasnaoui A. Modélisation de l'impact de santé publique d'un bisphosphonate à administration mensuelle dansl’ostéoporose post-ménopausique en France. Presented at the 18th French Congress of Rheumatology; 2005 December 4-7; Paris, France. (Abstract 888)

65 Euller-Ziegler L. Osteoporosis in France: New law on public health aims to decrease number of falls and fractures. [article on the internet]. Nyon: InternationalOsteoporosis Foundation. [Cited 2006 April 12]. Available from http://www.osteofound.org/publications/articles/002.html

66 Blotman F, Avouac B, Cortet B, Hilliquin P, Pouchain D, Allaert FA et al. Postmenopausal osteoporotic women risk factors and treatment compliance: OSTEPIstudy. Poster to be presented at the 33rd European Symposium on Calcified Tissues; 2006 May 10-14; Prague, Czech Republic

67 Hilliquin P, Avouac B and Blotman F. Factors associated with occurrence of osteoporotic fracture in post-menopausal women with osteoporosis: OSTEPI study.Poster to be presented at the 33rd European Symposium on Calcified Tissues; 2006 May 10-14; Prague, Czech Republic

68 Osteoporoosi: määritelmä, riskiryhmät ja ehkäisy. Lääkärin käsikirja 2005

69 Sintonen H and Vakkolainen A. Osteoporoottisten lonkkamurtumien taloudelliset ja elämänlaadulliset seuraukset. Terveystaloustiede 2002. Stakes: Aiheita 2/2002

70 Osteoporose.org [homepage on the internet]. Sinsheim: Kuratorium Knochengesundheit e.V. [Cited 2006 April 12]. Osteoporose - heute Geißel der Betroffenen,morgen Geißel der Gesellschaft? / Risiko-Test. Available from http://www.osteoporose.org/Fr-05.htm

71 Gol D, Schiffhorst G, Hagenmeyer E and Häussler B. Epidemiology, treatment and costs of osteoporosis in Germany (ETCOG). IGES Institute for Health andSocial Research Ltd. Berlin (Germany): 2005

72 Reginster JY, Anderson M, Delmas PD, Edwards L, Johnell O, Read IM, editors. The osteoporosis paradox: the neglected disease. A report of a symposium held atthe 2nd International Meeting on Social & Economic Aspects of Osteoporosis & Bone Disease; 2000 December 7; Liège, Belgium. New Jersey: Merck and Co; 2001

73 Shatrugna V, Kulkarni B, Kumar PA, Rani KU, Balakrishna N. Bone status of Indian women from a low-income group and its relationship to nutritional status.Osteoporosis International 2005; 16: 1827 - 1835

74 AIPOS.info [homepage on the internet]. Florence: Associazione Italiana Pazienti Osteoporosi. [Cited 2006 April 12]. Osteoporosi: Chi Colpisce/ Le Fratture.Available from http://www.aipos.info/home.htm

75 Thales and Cegedim. Mercato Osteoporosi.20 January 2006. Sponsored by Roche/ GSK

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77 Synovate Healthcare. A Qualitative Exploratory PATIENT Study for a New Drug for Osteoporosis. April 2005. Sponsored by Roche

78 Alvarez J. Prevención de la osteoporosis: el coste de la desinformación del paciente. Rev Esp Econ Salud 2002; 1 (4): 24-26

79 Grupo de Trabajo de la SEIOMM. Osteoporosis Postmenopáusica: Guía de Práctica Clínica. Versión resumida. Sociedad Española De Investigaciones Óseas YMetabolismo Mineral. (SEIOMM). Spain

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81 NOS.org.uk [homepage on the internet]. Bath: National Osteoporosis Society. [Cited 2006 April 12] What is Osteoporosis? Available fromhttp://www.nos.org.uk/osteo.asp

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83 Riggs BL and Melton LJ. The worldwide problem of osteoporosis: insights afforded by epidemiology. Bone 1995; 17 (5 suppl): 505S-511S

84 NOF.org [homepage on the internet]. Washington DC; National Osteoporosis Foundation. [Cited 2006 April 12] Advocacy: News and Updates. Available fromhttp://www.nof.org/advocacy/prevalence/index.htm

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This report was supported by an unrestricted educational grantfrom Roche and GlaxoSmithKline (GSK)