UNITED KINGDOM
COMMUNITY ADVISORY BOARD
(UK-CAB)
01 SEPTEMBER 2006
REPORT ON THE 18TH MEETING
Members attending:
Bonita de Boer Avert
Paul Clift UKC
Ben Cromarty North Yorkshire AIDS Action
Richard Day The OUR Project
Jim Jewers Positive East
Mohamade Jowata Brent PCT
Robert James CAB Steering Group
Simonde Kapulu Waverley Care Solas
Svilen Konov I-Base
Kevin Leyland Body Positive North West
Mary Lima Terrence Higgins Trust
Mark MacPherson I-Base
Victoria Neyu Body Positive North West
Kingsley Oturu IIHD, Queen Margaret University, Scotland
Roger Pebody Terrence Higgins Trust
Jim Smith KVN Forum
Carmen Tarrades ICW
Brian West HIV Scotland
Mildred Zimuya Waverley Care
Introduction:
The chair welcomed participants.
Housekeeping:
Apologies on behalf of the logistics organiser for some confusion regarding the accommodation of participants who are not from London. I-Base will issue confirmation emails for both rooms and registrations from now on, so that misunderstandings can be avoided.
Catering: Tea and coffee standard is down, hence a new supplier is looked for.
Lunch: will change venue for today to the Ibis hotel buffet. Participants are asked to feedback
1. Introductions
2. Feedback session and round-up of recent events
i) World Haemophilia conference in Vancouver. Robert James reports on one session on HIV. Nothing specific, however, that can be of interest for the UK-CAB. No focus on risk of bleeding, etc. or new drugs. There is a clear indication that haemophilia doctors should attend HIV conferences.
ii) EATG – nothing to report
iii) Transmission conferences
Two recent meetings one in London and meeting on legal implications in Keele that looked at international example (attended by Robert James and Roger Pebody), included a good speaker form TAC in South Africa. London meeting had a focus on criminalisation of sexual transmission. It included a speaker from criminal prosecution service (sexual health, including HIV) – but emphasis on HIV. Impression of 70’s attitudes to gay men, women, etc. Horrible attitudes to victims of sexual assault! Paul Clift sent a summary round to the list afterwards. Set-up as a debate, but then smaller discussion groups, which brought people face-to-face with hostility that is unpleasant but perhaps reality. Prejudice against HIV-positive people having sex, including from HIV+ people themselves.
Opportunity to UK-CAB to issue positive statement on HIV positive sexuality, perhaps with other organisations to sign on.
Recent acquittal for gay case was not reported by the media at all. Genotype cannot prove transmission. Defence can now bring sexual history in to court.
THT abstract in Toronto – 24 cases reported to THT. 50% based on inaccurate medical information.
Issue of difference with HIV – why not TB, other STIs etc
Will also risk reducing people going for testing.
UK-CAB needs to prepare a statement about the right to sexuality of HIV+ people.
“Same genotype does not prove transmission. Needs to be proven that A gave to B”
iv) lengthy email discussion on mandatory testing. In summary: 2 strong positions
1. FOR – increase earlier testing, reduce stigma, and
2. AGAINST – cautioning because of individual impact of diagnosis, discrimination still being an issue, particularly for women
v) BHIVA treatment guidelines online – comments due by Monday (4 September)
vi) BHIVA standards of care meeting. Several CAB members attended.
Issues: no mention of brain impairment for standards of care
Ben Cromarty: Only one half sentence that mentioned voluntary sector.
Basic proposition that there would be 2 formal types of centre. Tier 1 – basic uncomplicated cases. Testing, diagnoses, monitoring, first-line treatment; Tier 2 – limited number -- not specified – for specialist care – resistance, oncology, inpatient beds, greater qualifications. Spent an hour talking about medical qualifications required for each.
Included greater use of GPs for non-HIV related – but this in practice involves shuttling between healthcare services. A few HIV clinics are providing a GP service. Testing should be routine – opt-out. Also issue of disclosure and confidentiality with example form community about current difficulties in reality.
Waiting times: real patient concern – waiting for appointments and medications by many group members – should this be included within guidelines or remain individual clinic issue.
Adherence clinic – provided by some centres – not included in standards though. Advocacy should be provided at every clinic – only will be included though if community responses are clear on this.
Access to dental care is not included, but is important.
Example of West London clinic taking a year to get an advocacy position (N Middx and Northwick Park).
Responses – inform individual organisations cc’d to the list, and inform the UK-CAB list.
Always need medication to be individualised to something we can tolerate.
Second draft comes out in September and want new draft by end of year.
vi) elections to new steering group will take place before the next meeting. Each candidate will send out information. Please take part – all results confidential.
vii) Future UK-CAB meetings and subjects for training:
Commissioning and neuropathy are both highlighted.
Other suggestions:
• GP services – perhaps example form Brighton on primary care. Regional differences in GP care – country summaries would help for people who move locations.
• Paediatric care.
• Nutrition.
• Renal complications and nephropathy.
• Healthcare needs of asylum seekers – prevention and care, non-English speakers
• Refused cases of people on second-line therapy being deported to countries with only access to first-line drugs.
• Merck/Gilead on integrase inhibitors
3. Toronto feedback – Simon Collins
Slides online:
http://www.ukcab.net/sep06/index.html
Focus on track B sessions (clinical trials) from rapporteur summary: treatment access; new drugs; new strategies: Boosted PI’s
Simon gave a brief description of how IAC works: tracks. Also highlighted the interim conference, which focuses on Pathogenesis.
Slide presentation: Highlighted:
- PEPFAR: comments by Stephen Lewis? – more money is spent on war – 400 million dollars
- Lack of political will
- Criteria for switching treatment is not met
- Cheapest second line therapy is 5 times higher than 1st line
- WHO’s new guidelines – does not take into account finances
- Individual countries need to take the initiative – what happens after Global Fund ends
- The focus on PMTC is short term: need continuity of treatment for mothers
- Nutrition
- Monitoring mechanism to distribute global fund: NGO’s versus government monitoring the funds
Regarding treatment: pipeline of new drugs for resistance:
TMC-114 (Darunavir) – POWER studies:
- next for approval in the UK
- good results (specially with T-20)
- fast tracked based on phase II studies
MK-0518: late breaker: fast tracked based on early data – expanded access – Integrase Inhibitor (Simon gave a brief explanation on how it works). Also talked about:
- comparing it with a second line therapy
- cheaper to manufacture
- potentially has less side effects
- Merck compound – Merck have a history of supporting social health programmes , indinavir was least expensive PI etc – committed.
At this point we also talked about the conflict between activists and ABBOTT at the conference. We also talked about the fact that the government has responsibility to supply. And that there needs to be a balance between activists and pharma. “ free universal access to all essential medicines”
MK-0518: very exciting prospects – might be useful for PEP and PREP
- need to wait for safety data
MARAVIROC – CCR5 – danger of changing into X4 orientated viral strain– which is potentially more dangerous- leading to HIV progression after mutation
TMC 125: soon to have expanded access in the UK
TNX – 355: muscular injection every 2 weeks – triple class experienced patients
“ undetectable viral load is now the goal of BHIVA”
Kaletra monotherapy – leading to protease resistance – 2 studies in the UK
4. Brain impairment – Heather George-clinical psychologist’s view
Primarily to talk about what happens in practice. She has worked in HIV since 1985 and has seen changes throughout; and what happens when resources are not available.
Started with tests
Take a piece of paper – listen to very long list of 24 words
Try to remember some
Draw row of ‘x’
Then row of ‘o’s
Volunteer to complete sentences with final word that makes sense, then with a word that doesn’t make sense.
Then try list of words from first test. - memory
First words and last words effect: commonest strategy to remember
Length of words is example of type of tests that are used in testing people relating to memory and learning in standardised tests (developed for English speakers).
Gender differences are only very general, and many individuals have different responses. Cultural background and age are examples of other factors that can affect results. Anxiety and stress are also factors
All sorts of factors affect how people respond to tests – and needs to be allowed for in research settings.
US papers report high levels of brain impairment – may be to access healthcare – motivation of person giving diagnosis needs to be considered.
Other methods of diagnosis don’t always agree – i.e. scans don’t always correlate with symptoms or effects.
Rows of X and O – how many in a minute? – motor speed
Most people get 25-30 x O; 20-25 X – generally more O’s
Needs to consider competitive nature etc, history of poor school-type experiences, learning difficulties/dyslexia (pre-morbid intellectual issues)
Completing sentences – first with a logical word and then with an illogical word: easier to be logical – illogical shift is hard to make – get lower score if slightly related – psycho-motive skills
These exercises were used to give an idea of what it is like to be tested. Clinical psychology training is for how to interpret who information picture – including tests.
Testing is not a direct measure – always involves interpretation
Even when HIV was called HTLV-3 – it was known to have neurological complications – i.e. from early days. Affected – brain, spinal cord, muscle weakness (from nerve damage),
It was always assumed to be a late-stage effect – now it is more complicated – especially with ARV treatment. Often related to malignancies and infections. Also direct effects of HIV – called ‘dementia’.
Cogniticve function can also be affected by other general health – i.e. test results are lower if you are feeling ill.
Many early papers didn’t allow for other infections, health, nutrition, drug side effects, current past drug/alcohol use, employment, history of head injuries, emotional state, stress, bereavement, new diagnosis, economic situation, fatigue, etc (Nevire and Price etc)
Now, often complicates even getting a diagnosis of brain impairment.
Q- Is everyone affected to some degree?
A- No, you can be HIV-positive and have a perfectly normal brain
Many terms (with acronyms) were invented to cover range of symptoms – mild and severe forms – many that did not catch on.
With ARVs – higher risk of stroke, smokers living longer etc
HAART – recent studies say neuropsychological effects improve (Uganda), others see no effect – or even find increased incidence after HAART.
Current local incidence over past 2.5 years relating to HIV:
West Sussex – 5/120
Brighton and Hove 10-15/1200-1500
In early days – gave a lot of positive assessment –based situational-based problems, reassurance related in people who think they are affected – but tests show related to other factors.
Case example:
Self referred, felt changes – less good at languages, had been tested in another clinic 2-3 years earlier. Needed this earlier report (issues of confidentiality) – this time factor can be very important as people can be their own control. Earliest test showed varied abilities but no consistency to the results. Better on special abilities. Now he had similar concerns – everyday memory failure, forgetting conversations etc.
Partner had noticed this. He was 15 minutes late for appointments – is this important? Neat in appearance, polite, etc. Diligent in tests and could comment on them.
Last worked in 2000 – this can affect results – used zopiclone as sleep aid. Low drinking, low recreational drugs. Mother ill, problems with neighbours. Right-handed (some test are standardised for the right hand). Wore glasses. Good eye contact, Hesitant in speech. Made socially appropriate comments and jokes.
Repeated earlier standardised tests (not HIV-specific) i.e. intelligence scale. Has specific profile results – i.e. alcohol related effects etc. No change in signature.
Results – as before – were not significant – but there was a discrepancy between the two types of tests – though this also happens when repeated.
Some scores were anxiety-related – i.e. impulsive answers
This example shows how complicated other factors can be in making a diagnosis. The imterpretation of these results meant we could say that it was all stress/anxiety related – and that is to think about return to work etc
Case example:
50 yr. old man, diagnosed in 1990. Previous referral in 2000 but didn’t attend. Worked in bank – co-workers commented. ‘Felt worse since partner had had PCP’ – all from 2000.
He was taking St Johns Wort, and antidepressant, 20-year history of diazepam, alcohol binges at weekend, obese, low exercise, parental history of alcohol problems.
Educated in U.S. stopped working in 2000.
Moved to France in 2000 until 2004. Friends had found him in bad state and brought him back to Brighton (low weight etc).
Partner had recently died – and declined since then. Chronic diarrhoea. Didn’t realise his own health problems, Incontinent. Walking round ward without trousers or underwear. Tried to eat frozen food. Turned on kettle without water. Tried to take taxi to old address. MRI scan – ‘incomplete’ as he moved during the scan.
Rejected occupational therapy assessment.
Was on antidepressants, self-medicated. History of depression when 22, OD’d on aspirin when 26. Otherwise recovered without help.
Right handed – needed glasses but denied needing them. Left at home.
Generally cheerful and cooperative, but unresponsive. ‘Tests are easy and boring’ – though failing many. Would make things up. Didn’t appreciate need for tests. No insight into timed tests.
I.e. this case showed a very different picture – suggesting brain impairment – but results didn’t suggest alcohol related brain impairment (we also need to also allow for fact that that drinking can have higher risk of head injury from falling over’ etc).