1. HIV i-Base: Importance of treatment literacy Moscow - Feb 2006 Treatment literacy and peer support Moscow, February 2006 Simon Collins HIV i-Base, London

2. 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

3. HIV i-Base: Importance of treatment literacy Moscow - Feb 2006 Why treatment literacy?

4. 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

5. 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

6. 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

7. 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?

8. 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

9. 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

10. 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

11. 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+

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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

19. 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)

20. 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

21. 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

22. 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

23. 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

24. 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

25. 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

26. HIV i-Base: Importance of treatment literacy Moscow - Feb 2006 Booklet launched in Namibia AIDS Law Unit

27. HIV i-Base: Importance of treatment literacy Moscow - Feb 2006 The Namibian group didn’t just adapt the words…

28. HIV i-Base: Importance of treatment literacy Moscow - Feb 2006 Bulgarian Introduction to combination therapy, 2nd edition Plus and Minus

29. 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…”

30. HIV i-Base: Importance of treatment literacy Moscow - Feb 2006

31. ARVs in Our Lives Treatment Action Campaign, South Africa

32. 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

33. HIV i-Base: Importance of treatment literacy Moscow - Feb 2006 Future projects Existing 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