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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 l.jpg

www.guscairns.com

A Journey Through AIDS

Gus Cairns

Executive Committee, British HIV Association

European AIDS Treatment Group

Treatments editor, Positive Nation


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Young Gus…1981

www.guscairns.com


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First report of AIDS, 1981

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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.

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Paul, 1985

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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

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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.

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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

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The importance of celebrity

  • It was very important that people spoke up for PLWHAs in the UK and elsewhere…

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The importance of activism

  • …and that people with AIDS and HIV started to speak out for themselves

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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

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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

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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.

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The importance of support…

  • Instead, I decided to concentrate on being as physically and mentally healthy as possible…support groups

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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.

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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/

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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]

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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.†§

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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

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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.

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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.

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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

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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.

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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

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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)

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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

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So I got a new doctor! one dose in 20

  • 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

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Doctor and patient one dose in 20

  • 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.

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The decline of AIDS one dose in 20

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Positive Nation one dose in 20

  • 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

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AIDS activism goes global one dose in 20

  • 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…

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The difference activism makes one dose in 20

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.

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Unmet need one dose in 20

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

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Changes… one dose in 20

  • Split up with Gerry, 2003 

  • Left Positive Nation and became my own boss, 2004 

  • Finally fully qualified as psychotherapist, 2006 

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Challenges 1: Dying is hard, but so is living one dose in 20

  • “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)

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“What do you need?”: a UK survey one dose in 20

  • 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.

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Criminalisation and stigma one dose in 20

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Ageing one dose in 20

*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.

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Challenges 2: HIV is old news one dose in 20

  • “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

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Challenges 3: ongoing transmission one dose in 20

  • 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.

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Conclusions: how to live with HIV one dose in 20

  • 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

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Live as if you didn’t have HIV one dose in 20

  • 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.

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