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A Journey Through AIDS

A Journey Through AIDS. Gus Cairns Executive Committee, British HIV Association European AIDS Treatment Group Treatments editor, Positive Nation. Young Gus…1981. First report of AIDS, 1981. Q: What contributes to survival?. A: Love and Work. The two things that give life meaning.

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A Journey Through AIDS

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  1. www.guscairns.com A Journey Through AIDS Gus Cairns Executive Committee, British HIV Association European AIDS Treatment Group Treatments editor, Positive Nation

  2. Young Gus…1981 www.guscairns.com

  3. First report of AIDS, 1981 www.guscairns.com

  4. Q: What contributes to survival? • A: Love and Work. The two things that give life meaning. • A study (Bangkok 2004) of suicide and suicidal feelings among 3522 gay men in the UK, with and without HIV* • HIV status, HIV treatment and physical health made no difference • 22% of HIV+ men and 13% of HIV- men reported having felt suicidal – but that’s because HIV+ men were less likely to have a job. • Being unemployed = 2.3 times more likely to feel suicidal • Being single = 2.1 times more likely • I already had a job… *Sherr L et al. Suicide concerns and HIV among London gay men in the post HAART era. XV Int AIDS Conf Bangkok. Abstract MoOrD1030. 2004. www.guscairns.com

  5. Paul, 1985 www.guscairns.com

  6. Testing and early days • I tested HIV positive 25 September, 1985 • I tested because Paul had done • Immediate reaction – relief. Why? It meant I didn’t have anything to fear when we had sex • No treatments available • Both went on Concorde trial of AZT, 1989 www.guscairns.com

  7. Concorde trial* • 1750 people with HIV, reasonably good CD4 counts • AZT versus placebo • No difference in AIDS or death between AZT and placebo: 18% progressed to AIDS in 3 years whether or not they took AZT • Lesson: a single HIV drug doesn’t work *Concorde Coordinating Committee. Concorde: MRC/ANRS randomised double-blind controlled trial of immediate and deferred zidovudine in symptom-free HIV infection. Lancet. 1994 Apr;343(8902):871-81. www.guscairns.com

  8. Context • AIDS Panic in the Western World • “Gay plague” headlines • Calls for gay sex to be made illegal again • Immediate public health campaign in UK (right), 1987 • Free needles in Edinburgh (Scotland) stopped IVDU epidemic there www.guscairns.com

  9. The importance of celebrity • It was very important that people spoke up for PLWHAs in the UK and elsewhere… www.guscairns.com

  10. The importance of activism • …and that people with AIDS and HIV started to speak out for themselves www.guscairns.com

  11. Paul, 1989 • Paul, 04 Sept 1961 – 05 Jan 1990, age 29 • Started getting sick in 1988 • Died of KS in the lungs, early 1990 • Many other friends – a whole generation - died www.guscairns.com

  12. Slightly better medical news • Delta trial* of AZT + ddI or ddC • Reduced annual risk of AIDS or death by 38% (from 28.4% to 17.6%) compared with AZT alone • Lesson: two drugs are better than one • Some AIDS-related illnesses responding to treatment, eg PCP to Septrin • But contrast with drugs today: 90% of patients now achieve undetectable viral loads, 60% of patients with multi-drug resistance Darbyshire J, Delta Coordinating Committee. Delta: a randomised double-blind controlled trial comparing combinations of zidovudine plus didanosine or zalcitabine with zidovudine alone in HIV-infected individuals. The Lancet - Vol. 348, Issue 9023, 03 August 1996, Pages 283-291 www.guscairns.com

  13. AIDS Dissidents • Some people didn’t believe that HIV caused AIDS – and some still do • Others did believe HIV caused AIDS, but thought AZT was harmful. I decided to stop taking AZT. www.guscairns.com

  14. The importance of support… • Instead, I decided to concentrate on being as physically and mentally healthy as possible…support groups www.guscairns.com

  15. Isolation = depression = death • Study of African women with HIV,2007* • Those diagnosed as depressed were 60% more likely to develop AIDS and 260% more likely to die. • Study of 401 people with HIV, USA† • Lack of social support explained a third of all depression • Lesson: FRIENDS KEEP YOU WELL • Antelman G et al. Depressive symptoms increase risk of HIV disease progression and mortality among women in Tanzania. J Acquir Immune Defic Syndr 44: 470-477, 2007. †Stewart KE et al. Stress, social support and housing are related to health status among HIV-positive persons in the deep south of the United States. AIDS Care, 17( 3): 350 – 358. 2005. www.guscairns.com

  16. And exercise (me in 1993) • Going to the gym saved my life! It meant I kept my body weight up when I started to get sick • Loss of 5% to 10% of body weight increases risk of death 2.5 times in people with HIV* • In 10 trials, aerobic exercise programmes increased CD4 count by an average of 70† *Wheeler David A. Weight Loss and Disease Progression in HIV Infection. The AIDS Reader, 9(5):347-353, 1999. †O’Brien K et al. Effectiveness of Aerobic Exercise in Adults Living with HIV/AIDS: Systematic Review. Med Sci Sports Exerc 36(10):1659-1666, 2004/ www.guscairns.com

  17. And love… • Gary, 1993 • Born in Hong Kong, educated in Canada, settled in London • HIV negative – we had to negotiate safer sex which wasn’t always easy • Saw me through AIDS • Split up 2003 – see below • [photo deleted for confidentiality reasons] www.guscairns.com

  18. Why do people risk HIV? 1 • Condoms are the best measure we have against not only HIV but all STDs‡. In real-life situations they are 87% effective. • Studies from Europe and the USA show consistently that 80-90% of gay men try to use condoms but only 45% do so all the time. Heterosexual figures are worse*. • Why? Because people don’t like them. Condoms symbolise coldness, distance, lack of trust. They may even be seen as evidence of unfaithfulness.†§ www.guscairns.com

  19. Why do people risk HIV? 2 • Instead of using condoms, people try to have sex with people with their own HIV status – but this is often guessed, not known¶. • How do you stop guessing? By DISCLOSING – telling someone your HIV status • (1): in one UK survey only 60% of gay men with HIV had EVER disclosed to a partner before having sex for the first time, and only 20% always did※. • (2): in a French survey of steady couples where one person had HIV and the other did not, 97% of positive partners had told their partner and of the other 3%, 2% used condoms∥. • Lesson: one aim of HIV prevention should be to get people from (1) to (2) as fast as possible • Ask me about workshops that teach people disclosure skills www.guscairns.com

  20. Talking about HIV is good for you • In a study of psychiatric patients who had HIV, those who were open with people they knew had 20% increase in CD4 cells and those who told no one had 10% decrease# • Practice with support groups and other HIV+ people • Telling a loved one you have HIV says three things: • I have HIV • I trust and value you enough to tell you • I am strong enough to cope with your reaction • IT’S YOUR CHOICE. Only tell who you trust. www.guscairns.com

  21. Why do people risk HIV? References • ‡ Weller S, Davis K. Condom Effectiveness in Reducing Heterosexual Transmission. The Cochrane Database of Systematic Reviews, issue 1, 2002. • * For example, see Hickson F et al. Consuming passions: findings from the United Kingdom Gay Men’s Sex Survey 2005.Sigma Research, 2007 (ISBN 1 872956 89 0) • † Gay men: see Elam G et al. Intentional and unintentional UAI among gay men who HIV test in the UK: qualitative results from an investigation into risk factors for seroconversion among gay men who HIV test (INSIGHT). HIV Med 7 (supplement 1), abstract O27, 2006. • § Heterosexual women: see Simoni J M et al..Safer sex among HIV+ women: The role of relationships. Sex Roles, 42, 691-708. 2000. • ¶ Zablotska Manos I et al. Practice of serosorting: will it minimise HIV transmission risk? Eighth AIDS Impact Conference, Marseille, abstract 282, 2007. • ※GMFA. See http://www.metromate.org.uk under the ‘Why won’t he tell?’ campaign • ∥Spire B. Concealment of HIV and unsafe sex with steady partners is extremely infrequent. 3rd IAS Conference on HIV Pathogenesis and Treatment, Rio de Janeiro, July 2005. Abstract MoPeLB10.7P01 • #Strachan ED et al. Disclosure of HIV status and sexual orientation independently predicts increased absolute CD4 cell counts over time for psychiatric patients. Psychosomatic Medicine 69: 74-80, 2007. www.guscairns.com

  22. I still got sick (40th birthday, 1996) • Lowest CD4 count = 10 • MAI, KS, cryptosporidium, giardia, shingles (VZV), cholangitis. Etc • I was on AZT+ddC by this time www.guscairns.com

  23. Protease inhibitors, 1995/6 • David Ho [born Taichung, Taiwan!] paper in Nature, 1995* • Proved AIDS involved a continuing battle between HIV and the immune system • Showed HIV drugs could reduce virus replication to nearly zero • I lost any doubts I had about HIV medication and asked for the new protease inhibitors • I started on saquinavir, Jan 1997. *Ho DD et al Rapid turnover of plasma virions and CD4 lymphocytes in HIV-1 infection. Nature. 1995 Jan 12;373(6510):123-6. www.guscairns.com

  24. I went back to work… • Volunteered at Positive Nation, September 1997 as part of the UKC’s Back To Work programme • Got a job there (assistant editor) May 1998 • By July 1998 was interviewing people at Geneva World AIDS Conference www.guscairns.com

  25. But the drugs didn’t work! • CD4 count went up to about 50 but viral load up from 35,000 to 85,000 • Saquinavir = no absorption • Went on to 3x daily indinavir but couldn’t fit it into having a working life (you had to take it at least two hours away from food) www.guscairns.com

  26. This study says that you can’t afford to forget more than one dose in 20 Remember, poor adherence may not be your fault: it may be that your treatment makes you ill or does not suit your lifestyle You need a doctor you can tell this to, without being scared you’ll get told off… Poor adherence causes most treatment failure www.guscairns.com

  27. So I got a new doctor! • Mike Youle: known for ‘getting patients undetectable’. • Put me on five drugs: indinavir (+ritonavir), efavirenz, ddI, 3TC, hydroxyurea. • HIV viral load under 50 in October 1998. I have never had a detectable viral load since! • I’m now on tenofovir, FTC, atazanavir/r, nevirapine www.guscairns.com

  28. Doctor and patient • Canadian survey: patients with CD4 counts under 50 who have experienced doctors are five times less likely to die than those with less experienced doctors* • Studies of adherence show that a good relationship with your doctor ⇒ good adherence†. This is specially important for gay men, who want a doctor who understands their lifestyle‡. *Wood E, et al. Is there a baseline CD4 cell count that precludes a survival response to modern antiretroviral therapy? AIDS 17: 711-720, 2003. †Verfoort SCJM et al. Adherence in antiretroviral therapy: a review of qualitative studies. AIDS 21(3), 271-281. ‡ Schilder AJ. "Being dealt with as a whole person." Care seeking and adherence: the benefits of culturally competent care. Soc Sci Med. 52(11):1643-59. 2001. www.guscairns.com

  29. The decline of AIDS www.guscairns.com

  30. Positive Nation • The best job I’ve ever had • We did not try to make a magazine giving information about HIV. We tried to make a good magazine, for people who happened to have HIV. • It was about treatments and politics and fun www.guscairns.com

  31. AIDS activism goes global • Working at Positive Nation turned me political • I met people who were dying because they didn’t have access to pills I had in my pocket… www.guscairns.com

  32. The difference activism makes From Médecins Sans Frontières: Untangling the web of price reductions: a pricing guide for the purchase of ARVs for developing countries. 10th edition, July 2007. www.guscairns.com

  33. Unmet need 70% of the total unmet need 5 Receiving ARV therapy (Number of people in millions) 4 3 2 1 Latin America and the Caribbean East, South and South-East Asia Europe and Central Asia North Africa and the Middle East Sub-Saharan Africa But a long way to go ARV Therapy: global need, June 2006 www.guscairns.com

  34. Changes… • Split up with Gerry, 2003  • Left Positive Nation and became my own boss, 2004  • Finally fully qualified as psychotherapist, 2006  www.guscairns.com

  35. Challenges 1: Dying is hard, but so is living • “The Lazarus Effect” – rising from the dead. • New York study: 173 gay men in first two years of HAART (1995-7)* • One average, reduction in depression and anxiety • But not related to health status. They weren’t happier because they were well. They were happier because they hoped to be. • Continued uncertainty around health • Recovery means you have to face issues AIDS helped you avoid • HIV brings other issues like stigma, discrimination, work, money Psychological Effects of HAART: A 2-Year Study Judith G. Rabkin Psychosomatic Medicine 62:413-422 (2000) www.guscairns.com

  36. “What do you need?”: a UK survey • In a 2002 survey in the UK*, more than a third of PLWHA said the following issues bothered them: • Anxiety and depression (66%) • Sleep • Sex • Self-confidence • Healthy eating and drinking • Household chores and self-care • In a follow-on survey of Africans with HIV (see notes) more than half were bothered by these and other issues. *Weatherburn P et al. What do you Need? Findings from a national survey of people living with HIV. Sigma Research, 2002. ISBN 1 872956 59 9. www.guscairns.com

  37. Criminalisation and stigma www.guscairns.com

  38. Ageing *Grulich AE et al. Incidence of cancers in people with HIV/AIDS compared with immunosuppressed transplant recipients: a meta-analysis. The Lancet 370: 59-67, 2007. †Stein JH. Cardiovascular risks of antiretroviral therapy. N Engl J Med 356: 1773-1775, 2007. ‡Valcour V. HIV Infection and dementia in older adults: overview. Evolving Mechanisms of HIV Neuropathogenesis in the HAART era: Domestic and Global Issues, Venice, Italy, 2007. • One in nine people with HIV is now over 50 – including me! • This is good news but… • Diseases of age may overtake AIDS-related conditions • Concerns re cancers (3-5 times more common in all people with HIV)*, heart attacks†, dementia‡ • Many people never expected to survive and so never saved for old age. www.guscairns.com

  39. Challenges 2: HIV is old news • “Just another chronic illness” • All the money going into drugs, none into support • Voluntary sector (NGOs) facing closure: in the UK, my own organisation, UKC , was the latest casualty • Downgrading of medical care, too: people encouraged to see General Physicians, not HIV specialists www.guscairns.com

  40. Challenges 3: ongoing transmission • The more people there are living with HIV (world, left and UK, right), the more people will catch it and – because we do not have universal drug access – the more people will die of HIV • In South Africa today it is estimated that for every one person put on antiretroviral therapy, five more will catch HIV*. We need better prevention strategies. *Timberg, C: Spread of AIDS in Africa Is Outpacing Treatment.Washington Post June 20, 2007. www.guscairns.com

  41. Conclusions: how to live with HIV • Your life is not your illness • You are in the driving seat • Achieve one small thing every day • Feel your emotions – then move on • Eat, sleep and exercise well • Balance your work and play • Friends are your most precious resource • Talk about yourself and your HIV: but listen too • Make a friend of your doctor • Do something meaningful with your life and with your feelings • You have a right to love, sex and intimacy • Give love and support to others, don’t just expect it www.guscairns.com

  42. Live as if you didn’t have HIV • Bristol Cancer Help Centre, 1990* • Three kinds of patients: • 1. Those who did everything doctors and carers suggested but didn’t find out info • 2. Those who did lots and lots of their own research and became ‘cancer specialists’ • 3. Those who took an interest but carried on as much as possible living a normal life • The first group died first, the second died second and the third lived longest *Holland JC. Psychooncology Where Are We, and Where Are We Going? Journal of Psychosocial Oncology 10(2):103-110. 1992. www.guscairns.com

  43. Live as if you didn’t have HIV (Kilimanjaro summit, 2004) www.guscairns.com

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