A journey through aids
1 / 43

- PowerPoint PPT Presentation

  • Uploaded on

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.

I am the owner, or an agent authorized to act on behalf of the owner, of the copyrighted work described.
Download Presentation

PowerPoint Slideshow about '' - conner

An Image/Link below is provided (as is) to download presentation

Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author.While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server.

- - - - - - - - - - - - - - - - - - - - - - - - - - E N D - - - - - - - - - - - - - - - - - - - - - - - - - -
Presentation Transcript
A journey through aids l.jpg


A Journey Through AIDS

Gus Cairns

Executive Committee, British HIV Association

European AIDS Treatment Group

Treatments editor, Positive Nation

Young gus 1981 l.jpg
Young Gus…1981


First report of aids 1981 l.jpg
First report of AIDS, 1981


Q what contributes to survival l.jpg
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.


Paul 1985 l.jpg
Paul, 1985


Testing and early days l.jpg
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


Concorde trial l.jpg
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.


Context l.jpg

  • 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


The importance of celebrity l.jpg
The importance of celebrity

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


The importance of activism l.jpg
The importance of activism

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


Paul 1989 l.jpg
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


Slightly better medical news l.jpg
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


Aids dissidents l.jpg
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.


The importance of support l.jpg
The importance of support…

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


Isolation depression death l.jpg
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


  • 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.


And exercise me in 1993 l.jpg
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/


And love l.jpg
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]


Why do people risk hiv 1 l.jpg
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.†§


Why do people risk hiv 2 l.jpg
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


Talking about hiv is good for you l.jpg
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.


Why do people risk hiv references l.jpg
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.


I still got sick 40 th birthday 1996 l.jpg
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


Protease inhibitors 1995 6 l.jpg
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.


I went back to work l.jpg
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


But the drugs didn t work l.jpg
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)


Poor adherence causes most treatment failure l.jpg

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


So i got a new doctor l.jpg
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


Doctor and patient l.jpg
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.


The decline of aids l.jpg
The decline of AIDS one dose in 20


Positive nation l.jpg
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


Aids activism goes global l.jpg
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…


The difference activism makes l.jpg
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.


But a long way to go l.jpg

Unmet need one dose in 20

70% of the total unmet need


Receiving ARV therapy

(Number of people in millions)





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


Changes l.jpg
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 


Challenges 1 dying is hard but so is living l.jpg
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)


What do you need a uk survey l.jpg
“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.


Criminalisation and stigma l.jpg
Criminalisation and stigma one dose in 20


Ageing l.jpg
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.


Challenges 2 hiv is old news l.jpg
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


Challenges 3 ongoing transmission l.jpg
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.


Conclusions how to live with hiv l.jpg
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


Live as if you didn t have hiv l.jpg
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.