1. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 simon.collins@i-Base.org.uk http://www.i-Base.info Life experience: self empowerment through treatment advocacy Simon Collins

2. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F Introductions F Why treatment advocacy F Treatment history F Project examples F Study groups etc F Questions throughout (please) Introduction

3. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F I am a 44 year old gay man, I live in London, and I have been HIV-positive for at least 15 years. F I have worked as a treatment advocate for the last 10 years. F This involves following research, giving talks and training, running a treatment phoneline, running workshops, writing reports for doctors and HIV-positive newsletters. F No scientific background - but wanted to know how to stay alive for longest time, and to use best treatment F Self interest Introductions

4. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 How long have people been HIV-positive? i) less than 2 years ii) for 2-5 years iii) for over 5 years iv) for over 10 years ARV treatment - how many people… i) are not on ARV treatment ii) are on their 1st treatment iii) are on their 2nd combination iv) have changed a drug because of a side effect Introductions…

5. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F Every HIV-positive person has at least one question that they haven’t been able to get answered, or that they don’t really understand when their doctor has explained it F Examples…. Questions….?

6. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F This was the slogan used by ACT-UP in 1987 - it is still as appropriate F Think of examples of questions that you have had answered - did it make you understand you treatment better? - did you feel more ‘in-control’ afterwards? F Examples… Knowledge = Power

7. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F HIV+ people generally know a lot about our own treatment: -CD4 and viral load count -CD4 and viral load history -Roughly names of the drugs we have used. F Easiest way to talk about treatment is to start from your own experience Individual treatment histories

8. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F Who knows their last CD4 count F Who knows their first CD4 count F Only 2% of CD4 cells are infected with HIV F Only 2% of HIV-infected cells are in the blood F When you start treatment, first of all the virus is cleared (to <50 copies/mL) from your blood, then it is cleared from your lymph nodes and other sites (to <50 copies/mL) CD4 counts

9. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F Who knows their last viral load count F Who knows their first viral load count F In the first 2-3 weeks after infection your viral load can be over 1,000,000 copies/mL F Then your body’s immune system kicks in and brings it down F When you start treatment, your viral load should drop by 90% within the first few days. Viral load

10. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F Diagnosed with CD4 count = 60 F 1994-1996 monotherapy (AZT, then ddI, then 3TC) F 1996 - weighed 7 stone (about 45kg) F 1994-96 - AIDS defining illnesses included - severe wasting - microsporidia (stomach infection causing severe diarrhoea) - CMV in both eyes (causing permanent damage and requiring difficult treatment) - other related infections including candida (thrush) etc My treatment history

11. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F 1996 I started: indinavir + d4T + 3TC F My weight increased every day F CD4 count increased slowly: -1997 = 100; -1998 = 200 -1999-2005 = 300-400 cells/mm3. F Viral load tests not available until 1997-1998 F In the first two years I only missed one dose. I did not expect treatment to work…

12. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F Indinavir better than saquinavir (60% vs 40% undetectable) F No side effects like neuropathy Advantages: Disadvantages: F Indinavir difficult for quality of life F Indinavir lead to kidney blockages - switch to nevirapine F d4T lead to fat loss (lipoatrophy) - switch to abacavir

13. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F Switch d4T to abacavir in 1998 when the first studies showed a link between this drug and this side effect F Many treatment guidelines did not change for several years In 2001 included a caution against d4T, but it wasn’t until 2003 that d4T was removed as preferred first line choice. This is an example of the ‘medical timeline’. F This was clear to advocates who were had symptoms F From 2000 we reported benefits of New-Fill to treat facial fat loss, and advocated for this as a free treatment in the UK. Eventually this started in 2003/4 and I have had New-Fill treatment to correct this. This is still only available in a few clinics. F Continued use of d4T and poor access to New-Fill are two issues we chose to advocate about in the UK Lipoatrophy (fat loss):

14. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 New-Fill for facial lipoatrophy 3 weeks after 1st treatment3 days after 5th treatment

15. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F In 1996-7 HIV projects in the UK had offered complementary care and support, but less treatment information, because there were so few treatments. F Seen as specialist - for the doctor only - but advocacy is for options to be explained to a person. F HIV drugs were referred to as toxic rather than how well they worked. F Some community groups still argued that HIV did not cause AIDS. They were and are wrong. F In 1997, in the UK, many doctors still preferred to prescribe one drug (monotherapy) or two-drug (dual therapy) combinations. Early treatment in the UK

16. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F These projects worked on the basis of providing peer- support services and are often the first groups in any country F This means that HIV-positive people who have learned about one aspect of being HIV-positive, support other people just coming to terms with this - How to cope with HIV diagnosis - How to understand CD4 count and viral load - When to start treatment etc Peer support

17. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F You are the person getting symptoms F You are the person taking the treatment F You have the most vested interest in getting the best treatment and the best quality of life F Taking an active role will change the way your doctor talks to you F Healthcare resources are always limited, doctors are busy, hospitals are overworked Empowerment

18. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F When diagnosed people ask similar questions in every country: - How long will I live for? - Does treatment work? - What about side effects? - Will there be a cure? F Who has asked themselves each of these questions? F Who can answer each of these questions? Similar questions when diagnosed…

19. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F When on treatment the questions are the same: - How long will the drugs work? - What happens if I miss a dose? - Can I switch treatment? - Can I stop treatment? F How many people have asked themselves each of these questions? F How many people can answer each of these questions? Similar questions on treatment…

20. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F Your circumstances will determine your priorities and may need specific support: -ie if you are younger - if you’re isolated - do you know anyone else with HIV? -an IV drug user -applying for asylum or immigration -looking after a family - if you do not have safe housing or a job -if you can’t access treatment or monitoring tests But also differences…

21. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F In America, ACT-UP, demonstrated against lack of treatment, the slow pace of research and the cost of drugs, and succeeded in changing things in the US. F HIV drugs can now be approved by fast-track, accelerated approval, on as little at 16 weeks data, using CD4 and viral load F Expanded access programmes - so people who need new drugs urgently can get access before it is approved. F HIV+ people or community advocates are included at all levels - on advisory boards, on guideline writing committees, and on trial steering committees - and at medical meetings and conference. Examples of activism

22. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 F www.i-Base.info www.i-Base.info F HIV+ led treatment information project F Focus on latest research F Reduce medical timeline F Direct services: phoneline and information F Publications: various formats and website F Training and networks: UK-CAB, ECAB etc HIV i-Base: example projects

23. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Medical timeline Observation or research ideaY0 Pilot study -design, ethics approval, screen enroll1-2 years - run study, preliminary analysis+6 months Conference abstract+6 months Write up paper, submit to publication+6 months Published data+6 months Guidelines and clinical practice??? Total3-4 years

24. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Publications Guide to Starting ARV Treatment Guide to Avoiding and Managing Side Effects Guide to HIV and pregnancy Other ideas?

25. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Translations TaiwanNamibia Bulgaria Uganda Italy Different guides have been translated into over 20 languages - learn how to adapt for your own situation

26. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Training and workshops F Treatment Action Campaign - South Africa F Mbuya clinic, Uganda F Naz foundation, India

27. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Other projects Phoneline service: HIV-positive run (often first time caller has spoken to someone who is HIV+ -All aspects of treatment: pre-test, primary infection, newly diagnosed, starting treatment, resistance, adherence, failing treatment, new drugs etc -Free, confidential -information and advocacy service offered Study group - pick different subject and speakers

28. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Reading study group Based on asking questions - much easier in group Never a stupid question This is how I got my training, then by reading Pick one subject: - New drugs; or HIV resistance; - Prevention issues, using condoms, barebacking between two HIV+ partners - how to tell a partner you are HIV+ - news from the latest HIV conference etc etc Send reading material, one person leads, ask a doctor to speak?

29. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Example: New Treatments F Background to how drugs work F Difference with new drugs F Possible advantages and disadvantages F Use this in planning treatment changes

30. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 1987: AZT 1991: ddI 1992: ddC 1995: 3TC saquinavir 1994: d4T 1996: nevirapine indinavir ritonavir 1997: nelfinavir delavirdine 1998: efavirenz abacavir 1999: amprenavir 2000: lopinavir/r 2001: tenofovir 2003: T20 atazanavir FTC 2004: fosamprenavir 2005: tipranavir/r 2006: TMC114 ? 2007: Oral entry inhibitors? TMC125/278? 1987 91 92 94 95 96 97 98 99 2000 01 02 03 04 05 06 07 08 2008: Integrase? Budding? ARV drug dates approval (in US)

31. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Example: New Treatments F HIV ongoing replication - short-lived CD4 cells (1-2 days) F Only minority of CD4 cells are infected but they signal other cells to die F Only infected ‘active’ cells are seen and affected by treatment (Dormant cells are dormant) F Drugs don’t target HIV, but interfere with processes of reproduction F Treatment can target any stage of the replication cycle F Advantage of fewer side effects if they work outside the cell

32. S.Collins: HIV i-Base AIDS Conference Taiwan - September 2005 Integrase inhibitors Maturation and budding inhibitors

33. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 What to look out for F New Drugs: Entry inhibitors, Integrase inhibitors, budding inhibitors F Easier to take drugs, fewer doses, less side effects (are they still as active? F Treatment strategies: SMART (starting and stopping treatment depending on CD4 response to treatment) - largest HIV study; >6000 patients; follow for 7-9 years

34. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 How to sort and select information F How to manage and prioritise information F Pick and follow specific research F Learn how to find useful information and sorting out what is important F Keep a balance

35. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Where we are now… F Current drugs and knowledge could keep 90% of HIV+ people alive for the next 20-30 years (even if there was no further research) F Limitations include: -i) whether +ve people get access to those treatments and that knowledge -ii) whether we understand what leads to long-term or short-term treatment response -iii) whether we get treated with the best care

36. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 The big questions F How long will treatment last? -If you get viral load to less than 50 copies/mL - AND you continue taking your drugs on time - then the answer is indefinitely -This is because when the virus is analysed in people who have had undetectable viral load for 5-6 years, it has exactly the same structure. In people with even 500 copies/mL who never get below 50 copies/mL the virus is still mutating and changing - and therefore resistance develops and the drugs then fails.

37. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 The big questions F Can you change treatment? -There is nearly ALWAYS an alternative option - if one treatment doesn’t work then try another. -This is easier if your viral load is less than 50 copies/mL. -Remember to only replace a drug with one of similar or greater potency. -Be careful to remember if you had resistance to the switching drug. -Even if there isn’t a choice now, there will be one in the future -Ask for every option - some people will be able to stop treatment for example

38. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 The big questions F Will there be a cure? -Science will beat HIV - how long it will take is more difficult. -Drugs were developed to fight HIV faster than any other illness and HIV can be controlled for the majority of people with HIV who have access to treatment and who take their drugs. -Difficulty is because HIV gets inside the DNS of your immune cells and then these cells fall asleep. -You can eradicate all the HIV except one cell, which wakes up and infects you again. Drugs only work when cells are reproducing. Research is looking at how to control the virus by itself - so you may remain HIV+ but not need treatment. -There will be a cure - plan on being here when we find it

39. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Thanks… Bangkok, 2004

40. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Additional slides

41. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Denver Principles, 1983 PWA Self-Empowerment Principles, 1983 (Statement from PWA advisory committee) We condemn attempts to label us as "victims," a term which implies defeat, and we are only occasional "patients," a term which implies passivity, helplessness, and the dependence upon the care of others. We are "People With AIDS” (PWAs) - later PLWHA.

42. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Denver Principles, 1983 Recommendations for all people 1.Support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones - AIDS cannot be spread by casual, social contact. 2.Not scapegoat PWAs, or blame us for the epidemic or generalize about our lifestyles. Control with media.

43. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Denver Principles, 1983 Recommendations for PWAs 1.Choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies. 2.Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations. 3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge. 4. Substitute low-risk sexual behaviors; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.

44. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 Denver Principles, 1983 Rights of People with AIDS 1.To have as full and satisfying sexual and emotional lives as anyone else. 2.To quality medical treatment and quality social service provisions without discrimination of any form including sexual orientation, gender, diagnosis, economic status or race. 3. To full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives. 4. To privacy, to confidentiality of medical records, to human respect and to choose who their significant others are. 5. To die and to LIVE... in dignity.

45. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 1987: One drug $12,000 (AZT) 1996: $12,000 3-drugs 2000: $2,700 generic 3-drugs 2000: $900 generic 3-drug March 2001: ~$700 generic and brand April 2002: $209 generic 3-drug Oct 2003 $140 generic 3-drug ARV drug pricing 1989: One drug $8,000 (AZT) 1991: One drug $5,000 (AZT) Single DrugNVP-based triple combination - generic vs brand

46. S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 8am 12 noon 4pm 12 midnight 1996: $12,000 3-drugs 3TC: Every 12 hours First combination d4T: Every 12 hours Indinavir: Every 8 Hours No food for 2 hours before AND 2 hours afterwards