S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 [email protected] Life experience: self empowerment

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

[email protected]

http://www.i-Base.info

Life experience:self empowerment through

treatment advocacy

Simon Collins


Introductions

Why treatment advocacy

Treatment history

Project examples

Study groups etc

Questions throughout (please)

Introduction


I am a 44 year old gay man, I live in London, and I have been HIV-positive for at least 15 years.

I have worked as a treatment advocate for the last 10 years.

This involves following research, giving talks and training, running a treatment phoneline, running workshops, writing reports for doctors and HIV-positive newsletters.

No scientific background - but wanted to know how to stay alive for longest time, and to use best treatment

Self interest

Introductions


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…


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

Examples….

Questions….?


This was the slogan used by ACT-UP in 1987 - it is still as appropriate

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?

Examples…

Knowledge = Power


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.

Easiest way to talk about treatment is to start from your own experience

Individual treatment histories


Who knows their last CD4 count

Who knows their first CD4 count

Only 2% of CD4 cells are infected with HIV Only 2% of HIV-infected cells are in the blood 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


Who knows their last viral load count

Who knows their first viral load count

In the first 2-3 weeks after infection your viral load can be over 1,000,000 copies/mL

Then your body’s immune system kicks in and brings it down

When you start treatment, your viral load should drop by 90% within the first few days.

Viral load


Diagnosed with CD4 count = 60 1994-1996 monotherapy (AZT, then ddI, then 3TC) 1996 - weighed 7 stone (about 45kg) 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


1996 I started: indinavir + d4T + 3TC My weight increased every day CD4 count increased slowly:

- 1997 = 100;

- 1998 = 200

- 1999-2005 = 300-400 cells/mm3. Viral load tests not available until 1997-1998 In the first two years I only missed one dose.

I did not expect treatment to work…


Indinavir better than saquinavir (60% vs 40% undetectable) No side effects like neuropathy

Advantages:

Disadvantages:

Indinavir difficult for quality of life Indinavir lead to kidney blockages - switch to

nevirapine d4T lead to fat loss (lipoatrophy) - switch to abacavir


Switch d4T to abacavir in 1998 when the first studies showed a link between this drug and this side effect 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’. This was clear to advocates who were had symptoms 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. Continued use of d4T and poor access to New-Fill are two issues we chose to advocate about in the UK

Lipoatrophy (fat loss):


New-Fill for facial lipoatrophy

3 weeks after 1st treatment 3 days after 5th treatment


In 1996-7 HIV projects in the UK had offered complementary care and support, but less treatment information, because there were so few treatments.

Seen as specialist - for the doctor only - but advocacy is for options to be explained to a person.

HIV drugs were referred to as toxic rather than how well they worked.

Some community groups still argued that HIV did not cause AIDS. They were and are wrong.

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


These projects worked on the basis of providing peer-support services and are often the first groups in any country

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


You are the person getting symptoms You are the person taking the treatment You have the most vested interest in getting the best

treatment and the best quality of life Taking an active role will change the way your doctor talks

to you Healthcare resources are always limited, doctors are

busy, hospitals are overworked

Empowerment


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? Who has asked themselves each of these questions? Who can answer each of these questions?

Similar questions when diagnosed…


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? How many people have asked themselves each of these

questions? How many people can answer each of these questions?

Similar questions on treatment…


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…


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.

HIV drugs can now be approved by fast-track, accelerated approval, on as little at 16 weeks data, using CD4 and viral load

Expanded access programmes - so people who need new drugs urgently can get access before it is approved.

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


www.i-Base.info HIV+ led treatment information project Focus on latest research Reduce medical timeline Direct services: phoneline and information Publications: various formats and website Training and networks: UK-CAB, ECAB etc

HIV i-Base: example projects


Medical timelineMedical timeline

• Observation or research idea Y0

• Pilot study

- design, ethics approval, screen enroll 1-2 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 ???

Total 3-4 years


PublicationsPublications

Guide to Starting ARV Treatment

Guide to Starting ARV Treatment

Guide to Avoiding and Managing Side Effects

Guide to HIV and pregnancy

Other ideas?


TranslationsTranslations

Taiwan Namibia Bulgaria Uganda Italy

• Different guides have been translated into over 20 languages - learn how to adapt for your own situation


Training and workshopsTraining and workshops

Treatment Action Campaign - South Africa

Mbuya clinic, Uganda

Naz foundation, India


Other projectsOther 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


Reading study groupReading 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?


Example: New TreatmentsExample: New Treatments

Background to how drugs work

Difference with new drugs

Possible advantages and disadvantages

Use this in planning treatment changes


1987:AZT

1991:ddI

1992:ddC

1995:3TCsaquinavir

1994:d4T

1996:nevirapineindinavirritonavir

1997:nelfinavirdelavirdine

1998:efavirenzabacavir

1999:amprenavir

2000:lopinavir/r

2001:tenofovir

2003:T20atazanavirFTC

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)


Example: New TreatmentsExample: New Treatments

HIV ongoing replication - short-lived CD4 cells (1-2 days)

Only minority of CD4 cells are infected but they signal other cells to die

Only infected ‘active’ cells are seen and affected by treatment (Dormant cells are dormant)

Drugs don’t target HIV, but interfere with processes of reproduction

Treatment can target any stage of the replication cycle

Advantage of fewer side effects if they work outside the cell

S.Collins: HIV i-Base AIDS Conference Taiwan - September 2005

Integrase inhibitors

Maturation and budding inhibitors


What to look out forWhat to look out for

New Drugs: Entry inhibitors, Integrase inhibitors, budding inhibitors

Easier to take drugs, fewer doses, less side effects (are they still as active?

Treatment strategies: SMART (starting and stopping treatment depending on CD4 response to treatment)

- largest HIV study; >6000 patients; follow for 7-9 years


How to sort and select information

How to sort and select information

How to manage and prioritise information

Pick and follow specific research

Learn how to find useful information and sorting out what is important

Keep a balance


Where we are now…Where we are now…

Current drugs and knowledge could keep 90% of HIV+ people alive for the next 20-30 years (even if there was no further research)

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


The big questionsThe big questions

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.



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



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


Thanks…Thanks…

Bangkok, 2004


Additional slidesAdditional slides


Denver Principles, 1983Denver 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.



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.



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.



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.


1987:One drug$12,000(AZT)

1996:$12,000 3-drugs

2000:$2,700generic3-drugs

2000:$900generic3-drug March 2001:

~$700generic andbrand

April 2002:$209generic3-drug

Oct 2003$140generic3-drug

ARV drug pricing



Single Drug NVP-based triple combination - generic vs brand


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

Documents

S.Collins: HIV i-Base HIV Positive Conference Taiwan - September 2005 [email protected] Life experience: self empowerment