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HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Treatment literacy and peer support
Moscow, February 2006
Simon Collins
HIV i-Base, London
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Why treatment preparedness
• Introduction
• What is treatment literacy and treatment preparedness
• Role of HIV+ in treatment literacy
• Examples from the UK
• International links
• Cost savings and effectiveness
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Why treatment literacy?
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
In one village, almost 90% of people stopped taking the ARVs within a short period of time. This was because of the way they distributed the drugs without any education. They just passed them out with no information.
Some of the people had side effects and the others watched them and stopped.
There was a lack of understanding and no treatment literacy and rumours came from the village, “the government is trying to poison us." There is a lot of misunderstanding.
Thomas Cai, China
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
HIV i-Base
• HIV positive led treatment advocacy organisation based in London
• We produce technical information for health care workers and non-technical information for positive people
• Other services: a treatment phoneline, training and workshops, scientific meetings
• We produce copyright-free material that has been translated into 28 languages
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Personal history
• Started HIV medication in 1996 with CD4 count = 2 (normal range = 500-1600)
• 10 years as a treatment advocate
• Experience in UK and European HIV-positive NGOs and international networks
• Treatment workshops in UK, Europe, Uganda, South Africa, India, Taiwan
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Common experiences
• Shock of diagnosis
• Isolation, prejudice, denial
• Need for information
• How long will I live?
• Can I get treatment?
• Do the drugs work?
• Fear of side effects?
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Definitions
Treatment literacy - an HIV-positive person who starts to understand their own health:
• CD4 count - indicates immune system
• viral load - effectiveness of treatment
Treatment preparedness - community responses, peer advocacy, access to information, adherence, resistance, risk reduction, etc
• WHO and TIDES international funding $3m
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Role of patients in treatment literacy and peer advocacy
• Experience can be more important than formal medical training - language
• Highly motivated - most affected
• Better health and support
• People directly affected have already stopped working - illness or discrimination - ie Uganda Mbuya clinic - ‘twin’ support - 99.3% adherence
• Cost effective - often volunteers
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
UK experience
• Little treatment preparedness in 1996 when treatment was first introduced
• But, a network of voluntary and peer support services existed
• Network developed programmes for adherence, resistance, treatment choice
• Patient drive for treatment and information
• Similar models in every country where HIV is a health issue - ie peer support first
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Peer support
• Complements and works with medical professionals: committed, motivated, appropriate language, inexpensive
• Different interventions for different groups
• Increased adherence, reduces costs from failing treatment: UK, Uganda, South Africa
• Effective treatment complements prevention and coinfection programmes
• In 2006 <10% IDU in UK are HIV+
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Examples
Direct experience of real life:
• Produce basic resources in non-technical language: infection, prevention, treatment, side effects; also HTB
• Workshops, treatment phoneline
• Help relating to discrimination or fear of authority prevents HIV staying underground
• Always more effective than official/govt/professional - language
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Phoneline
• 40+ volunteers, 90% HIV-positive
• Free/low cost anonymous, any treatment question, ‘second opinion’
• Personal support & treatment information when caller realises they are talking to HIV+ person, calls 30-40 minutes+
• Training programme provided speakers and patient experts for medical and governmental committees
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Best practice in the UK
• Clinic-based support groups
• Patient representation & involvement on policy and guideline committees
• Low cost phoneline or 1-2-1 for confidential support and information
• Low cost written information on each drug and each side effect
• Other support: i.e. why HIV treatment is different: “a little is not a good thing” etc
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Why “a little is not a good thing”
• Different to other treatment - against ‘common sense’ - ie for headache, heart disease, high blood pressure, pain relief etc - but similar to TB
• Resistance is permanent: loss of treatment options (current and future)
• Difference between 1 year and 20+ years
• Transmission risk, resistance
• Time needed to explain difficult ideas
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Printed material: comprehensive, low literacy guides• Introduction to combination therapy
• Changing treatment
• Avoiding & managing side effects
• HIV, pregnancy & women’s health
Distributed free in clinics and through support groups
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Printed material: HIV Treatment Bulletin• To all HIV doctors in the UK
• Free and online
• Started as Fax
• Focus on new information etc
• uses technical medical language as this is important and appropriate
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Training manual for advocates
• First used as the home study component of the STEP project in Russia.
• Now versions in Nepali, Hindi, Vietnamese, Portuguese, Bulgarian. & adapted in South Africa.
• CD4/viral load, starting treatment, infections, IDU support, coinfection etc + ‘science support’ sections
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Positive handbook
• Last year we produced a “generic” booklet based on WHO guidelines
• So far it has been adapted for use in Namibia and the Great Lakes Region (Uganda, Kenya, Tanzania, etc)
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Best practice in the UK.2
• Free and anonymous HIV testing
• Choice to register at any HIV clinic
• Right to a second opinion
• Free treatment
• Harm reduction support, clean needles, methadone access, free condoms etc
Etc - and patient responsibilities in exchange
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Wider networks
• Email and internet: easy and inexpensive
• Medical advances quickly publicised
• Common problems: with limited resources collaborations - don’t “reinvent the wheel”
• Resources can be adapted - to be relevant
• ITPC, EATG, ICW, NGO applications to GFHTM
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
International Treatment Preparedness Coalition
• 600 advocate members from >120 countries
• leading civil society coalition on treatment preparedness and access issues
• Recent report: ‘Missing the Target’:
www.aidstreatmentaccess.org
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
‘Missing the Target’: Russia
• 3,000 people on treatment now, out of 50,000 in need.
• Positive and optimistic - a new epidemic: with GFATM and government programmes aiming for 75,000 on treatment - new opportunity
• 13 interviews with representatives of government, activist, NGO, and PLWHA organisations in Dominican Republic, India, Russia, Kenya, Higeria, South Africa
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
‘Missing the Target’: Barriers to treatment
・ Faulty drug procurement system
・ Lack of communication and collaboration among
providers
・ No national treatment protocol
・ Stigma against IDUs
・ Lack of support for adherence
・ Limited connection between TB and HIV
services
・ Ineffective CCM
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
‘Missing the Target’: Recommendations ・ Develop treatment protocols
・ Build collaborations between civil society & govt.
・ Provide training and support for human resources
・ Promote treatment uptake - literacy material
・ Use PLWHA & community expertise
・ Use monitoring to improve programs
・ Advocate for appropriate services for IDUs
・ Provide adherence support - ‘Peer educators are
particularly effective among groups facing dual stigma”
・ Improve drug procurement
・ Work against stigma
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Booklet launched in Namibia
AIDS Law Unit
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
The Namibian group didn’t just adapt the words…
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Bulgarian
Introduction to combination therapy, 2nd edition
Plus and Minus
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Training manual launched in Nepal with ‘Nava Kiran Plus’
“…advocacy and literacy are needed to fight HIV/AIDS…lack of human resources, deaths, burnout and limited financial support… have been constraints…”
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
ARVs in
Our Lives
Treatment Action Campaign, South Africa
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Copyright and contracts are obstacles
• No copyright on material
• Information should be free and accessible to people who need it
• If people don’t know about treatment they won’t come forward to use it; treatment and prevention are closely linked
• Material should be adapted to local and national situations, and be produce by and for all those groups most affected
HIV i-Base: Importance of treatment literacy Moscow - Feb 2006
Future projectsExisting materials
Make kits from booklets and manual with Word files of texts and illustrations and graphs separately. Include more educational exercises in training manual
New booklets
Women’s health; Hepatitis coinfection; TB coinfection Paediatrics
New training modules
Starting treatment; Changing treatment; Hepatitis/HIV coinfection; TB/HIV coinfection; Women’s health and Paediatrics