HIV treatment advocates network
HIV treatment advocates network
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24 October 2008
Programme
Members Attending
New Look Bulletin Board - Matt Williams
London Commissioners Drug Goup/D:A:D Reseach
Mexico Feedback
Simon Collins
Social Issues - Paul Clift
BHIVA Education & Scientific Committee Feedback - Elijah Amooti
BHIVA/CHIVA Feedback - Matt Williams
Transitional Care - A Clinical Care Perspective - Susan McDonald
Young People and HIV - Maria Phelan, Nat Children's Bureau
UKCAB Business
Matt Williams
A demonstration of the forum:
http://www.ukcab.net/forum/help/quickstart.html
Q: Do messages go everyone?
A: First message goes to everyone.
Matt encouraged all members to send test messages after the meeting to demonstrate their understanding of how the forum works.
Simon Collins
Download presentation as a PDF file [1.4 MB]
Emphasis on track C, D, E covering:
Abacavir and heart disease D:A:D study
D:A:D is the largest study designed to look at heart disease and HIV treatment with over 33,000 people followed for over seven years. Researchers had found that the current or recent use of abacavir approximately doubled the risk of having a heart attack compared to using other nukes. Many people wanted confirmation of these results in other studies. They found risk was most significant in people with high cardiovascular risk - family history, lifestyle,smoking etc.
GSK study results from their own database of clinical trials did not find a link to heart disease. Reasons for this difference that need to be addressed were that GSK patients were much younger and healthier (10 years younger). Age increases cardiovascular risk. Patients with cardiovascular risk are often screened out from new drug studies. GSK database was not designed to look for or record cardiovascular events and therefore not powered to be able to see any link to abacavir use.
Framingham and CVD risk factors - HIV positive people need to check their risk of heart disease using the online Framingham calculators. If it is high, there is a 20% chance of a heart attack in the next 10 years and should use an alternative to abacavir.
Discussion:
After 7 years Abacavir was seen to cause heart disease after family history investigations. Study shows that stopping use, risk disappears. If a patient is high risk on Framingham, do not use Abacavir.
Swiss statement - background: Study on discordant heterosexual couple where the HIV positive partner is stable on HIV treatment, has undetectable VL for more than 6 months, adherent, no STIs, and monogamous, risk of HIV transmission is unlikely.
Prevention:
ARVs and Viral load: Basis - viral load drives transmission risk
Other issues raised are condom break, pregnancy, PEP
Questions:
anal sex? The study was not conducted on gay men. Risk as continuous vs lower cut-off etc
New drugs:
Discussion:
Q: Should UKCAB write to EMEA?
Q: What about lipo for people starting treatment?
A: It should be managed properly due to the drugs available, guidelines show that it may not be necessary to switch. Q: Side effects like neuropathy? A: There will always be side-effects with all drugs.
Comment: TM278 drug trial - 5 years for trials to be approved
Paul Clift
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Paul's Mexico feeback was on the social issues at the Mexico conference. His observation was that gay men and MSM were 'readmitted' centre stage; African Gay & MSM highly visible; Challenges to (African) homophobia. The main themes were:
Circumcision as prevention?
TUAC03 - concern raised from the floor is that the effect of male circumcision on women was of great concern and according to the presenters is still largely unknown - THBS0104 Marge Berer (Reproductive Health Matters)
Benefit to MSM? Berer: Anecdotes
Berer: Conclusions
In other words, circumcision is not a purely clinical intervention; significant non-clinical aspects have to be considered also.
Criminalisation
Presentations from:
Edwin J Bernard
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Efforts should be made to address the root causes that drive the demand for criminalization in Africa to:
African Gay Men & MSM
Discussion:
Elijah Amooti
Comment: No community session at the next BHIVA conference; will be incorporated in future conferences.
Q: Is studying for the diploma free?
A: No
Q: There is need to have patients attend the course for the diploma
Q: is it a requirement for each doctor to take the diploma course?
A: It is a requirement for new doctors; maybe there is need for a refresher course for GPs every 5 years
Q: Could you ask BHIVA to put up treatment guidelines as HTML not PDF
A: This will be taken to BHIVA
Matt Williams
Community session: undetectable = uninfectious?
This was to discuss the science behind the recent Swiss statement on risk of transmission when viral load is undetectable and offer a community response.
Matt thanked Gus Cairns and his co-chair for leading an incisive and much appreciated session at the BHIVA autumn conference. There were presentations from Dr Bernard Hirschell, Geneva and Dr Steve Taylor, Birmingham. Disagreements seemed more on detail than the broad principle that treatment is highly protective in terms of transmission.
Particular thanks go to Edwin Bernard, NAM and Silvia Petretti, PW/PozFem UK for their intelligent, real and humanising presentations (after much discussion of genital tract sampling for viral load by the docs...).
The feedback from several eminent figures (doctors) was that this was an "essential", "important" and "impressive" session. For Matt, the session raised more questions than it answered on current treatment/prevention paradigms.
Silvia's feedback from women on Swiss statement:
Cons:
Pros:
Bernard's feedback from gay men on Swiss statement:
Denial: "I was actually rather surprised to see this statement made especially considering everything I've read in the past suggests completely the opposite."
Anger: "[The Swiss statement] is morally unconscionable!! There is no doubt that many men who have read it simply jump for joy, throw condoms to the wind, and have unprotected anal sex. The consequences are beyond belief!!!!"
Bargaining: "As someone who's been positive for eight years, has faithfully taken meds every day, and remained undetectable and very healthy, I am hopeful that some day I will be able to freely engage in unprotected sex with my negative (receptive) partner. More [studies are] needed, clearly. It would be wonderful to be able to truly feel the connection, rather than feeling that we're in separate rooms."
Depression: "So, basically I got nothing from this … Am I infectious to my lover or not?..."
Acceptance: "I tested positive for HIV the first time I tested 23 years ago. I have tested "undetectable" for years. I have consensual condom free sex often. NONE of my partners have seroconverted."
Some final observations:
Slide sets with full comments from Silvia, Bernard and Dr Hischell's brief version of the science behind the Swiss statement are on the UK-CAB website: http://www.ukcab.net/resources/presentations.html
Q: Is there an argument for starting treatment sooner than current guidelines recommend?
A: Yes, perhaps. British Columbia has a model for treating everyone which eliminates the epidemic in 30 years. Also good personal reasons, eg to protect partner.
Q: What to do with people identified as having frequent unsafe sex, could they get daily directly observed treatment?
A: Difficult, perhaps unworkable long-term, questions about whether this counts as medical treatment as a punishment (not allowed) or a public health measure (maybe allowed). Also, how do you prove someone is doing what you think they are doing?
Q: Has Swiss statement affected criminal prosecutions [in Switzerland]?
A: It has got worse. To some extend the statement was designed to mitigate prosecutions. Swiss courts have now decided that you can be prosecuted if you are or might be HIV-positive, whatever the risk involved.
Comment: Need to individualise prevention message around treatment being protective.
Q: Adolescent transmission - can they be prosecuted?
A: There have been no cases yet.
Other feedback
1. Health tourism
A new NAT report that "separates facts and evidence around migration from fears and misinformation" argues that there is no evidence to demonstrate that HIV health tourism to the UK exists.
2. Untested children, late presentation and delayed diagnosis
A small but significant number of vertically infected (mother-to-child transmission at birth) adolescents have survived childhood undiagnosed and untreated. London: recent death of an adolescent whose HIV status was missed during childhood, and who presented with TB and died soon after. Audit identified 42 adolescents aged between 13 and 20 who had acquired HIV vertically. 50% had symptoms at the time of diagnosis. Median CD4 count was 210 cells/mm3 (range 0-689).
3. Gay men, Africans and undiagnosed HIV
4. Prebiotics
Prebiotics - like probiotics (Actimel etc) but work in colon, not small intestine. Gut is the largest immune system organ in the human body. Soon after an individual becomes infected with HIV, the virus directly infects gut associated lymphoid tissue (GALT) where 70-80% of all immune cells exist, destroying up to 80% within a month of infection. Prebiotics seem to assist with restoration of gut health. Small study by Dr Mario Clerici, Milan University Medical School + Danone Research Centre, Netherlands.
The main theme of the meeting was transitional care of children to adult services with clinical and social care perspectives. Transition was defined as:
" The purposeful, planned movement of adolescent and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems "
(American Society for Adolescent Medicine, 1993)
Susan McDonald CNS, 900 Clinic, St Mary's Hospital London
UNAIDS/Who statistics:
Planned transition: well planned improved clinical, educational and social outcomes; poor transition increased risk, non-treatment adherence and loss to follow-up.
CHIPS - a collaboration between the National Study of HIV in Pregnancy and Childhood (NSHPC), 52 clinical centres in the UK and Ireland and the MRC Clinical Trials Unit; includes all children in follow-up since 1996 in the 52 participating centres; annual prospective follow up since 2000 with prior retrospective data collection.
CHIPS summary: Half the children in cohort have survived to adolescence; 103 have transferred to adult services.
Q: To what extent can the CD4 counter maker be used as an indicator?
A: Children generally have high CD4, becomes clearer when they are older.
Q: What is it like working on the frontline?
A: They are amazing young people, reality is some of the medication are difficult to take such as ritonavir. You have to offer holistic support - peer support, try to work with them and help them through changes.
Q: Are there any medical trials for adolescences, or are they taken for granted?
A: None going on at present
Q: Are there other factors affecting adherence?
A: At Body and Soul there is a large group of young people, have worked as peers to those with adherence issues.
Q: What does St Mary's do for people who come out of town?
A: We provide residentials so they can meet with other people, Barnados in Manchester has a project.
Q: What about body image - have any young people had fillers?
A: We have not had facial lipoathy, but lipo. One child in a case study would like to have surgery
Q: What about untested kids in families?
A: CHIVA conference in December: Don't forget the children, would encourage UKCAB to have strong representation.
Q: Education and GPs - do they know about children's needs?
A: GPs are variable; most children are linked with GPs. MDT is composed of doctor, nurse, social worker and patient has access to all. It is a one-stop shop with access to family planning nurse, no social worker, Citizens Advisory Bureau. We have links with Connexions and do referrals. NCB has facilities for 1-2-1 consultations
Discussion:
Q: Is there a helpline for families with children, seems no specialist service is available?
A: NCB's website is a good information base.
Maria Phelan, Children and Young People HIV Network Coordinator, National Children's Bureau (NCB)
NCB aim to give a voice in policy and practice development to children and young people who live in the UK and are infected by HIV.
Issues young people identify:
Relationships, being independent, living a 'normal life', talking in families, wanting to know their story, difficulty with lying and keeping secrets, managing medication around life, loss and bereavement and the future.
Challenges
Guilt and shame instilled into children, they are on complex regimes - drug resistant strains from their parents, need different support for adherence, need to talk to someone they can trust/or someone like them, family setting - some it's a secret, cant talk to friends for support, isolation - mental health problems, no policy on HIV disclosure in DDA pack given to schools - working with NAT and the media not being friendly to HIV.
Q: Criminalization - children who do not know their status, is there a case?
A: Not sure, child protection issue, are we accelerating disclosure?
Comment:
HIV world is dominated by adult care, should kids' needs be met? There is the future - college, family etc.
Concerns:
Being judged about the origin of their HIV, building new relationships with new professionals.
Comment:
There is no HIV clinic for young people in Yorkshire.
A: It is difficult to replicate in other areas - recommend build up a relationship with the adult care over time.
Discussion:
Q: What about long-term side-effects of HIV such as cancer, brain development?
A: There should be service provision during transition with adequate services such as an evening clinic, adapt adult services to suit young people.
Topics for future CAB meetings:
Yellow card scheme feedback:
BHIVA Executive Committee membership:
Steering Group Member selection process:
Suggestions for community presentation at BHIVA autumn conference:
UKCAB Chair
Andrew Chuba, Black Health Agency, Manchester.
Angeline Marang, HIV i-Base, London.
Anthony Aclet, UMOJA, London.
Anthony Tukai, Oxfordshire Social Services, Oxford.
Ben Cromaty, North Yorkshire Aids Action, Yorkshire.
Brian West, ECAB, Edinburgh.
Edwin Bernard, NAM, London.
Elija Amooti, The African Eye Trus,t London.
Emma Hudson, Brunswick Centre, Halifax.
Jeff Ukiri, Black Health Agency, Manchester.
Joram Barigye, THT Working, Working.
Kingsley Oturu, Inst. Of International Health & Dev, Edinburgh.
Maria Phelan, NCB London.
Matthew Williams, UK-CAB, London.
Memory Sachikonye, UK-CAB, London.
Michael Marr, Waverley Care, Edinburgh.
Nakamba N'gambi, Leeds Skyline Services, Leeds.
Paul Clift, King's College Hospital, London.
Roger Pebody, NAM, London.
Rupert Jones, Leeds African Group, Leeds.
Sarah Nicholas, Northwick Park Hospital, London.
Simon Collins, HIV i-Base, London.
Susan McDonald, 900 Clinic, St Mary's Hospital, London.
Svilen Konov, HIV i-Base, London.
Taana Nimisha, Body and Soul, London.
Tsepo Young, NHS (Skyline), Glasgow.
Winnie Sseruma, HIV i-Base, London.
Yigletu Bisrat, Naz Project, London.
Yusef Azad, NAT, London.
Simon Collins, HIV i-Base, London.
Paul Clift, King's College Hospital, London.
Elija Amooti, The African Eye Trust, London.
Matthew Williams, UK-CAB, London.
Nick Paton, MRC, London.
Susan McDonald, 900 Clinic, St Mary's Hospital, London.
Maria Phelan, NCB, London.
Simon Collins
Main themes: all 'community-related', new drugs, abacavir, heart disease, abacavir and high viral load, prevention: ARVs and viral load, nelfinavir contamination, other studies.
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Paul Clift
Main themes: male circumcision, criminalisation, frican gay men and MSM - and a tendency not to 'pussyfoot' around certain issues, notably African homophobia.
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Matt Williams
Main themes: 'health tourism', untested children and late diagnosis, gay men, Africans and undiagnosed HIV, prebiotics, community session: undetectable = uninfectious?
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Maria Phelan
Main themes: children, young people and; HIV, impact of HIV on infected children, issues young people identify, transition from paediatric to adult services.
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Views expressed in this report are personal and do not represent the views of any organisation involved in the meeting. Reasonable steps have been taken to ensure this report is accurate but it is for information only and not a substitue for professional advice.
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