UK-CAB 18 – Meeting Report

HIV related dementia

1 September 2006
Programme for the meeting
Reading material
Members attending
Feedback session and round-up of recent events
Toronto feedback – Simon Collins
Brain impairment – Heather George-clinical psychologist’s view
HIV Related Brain Impairment (HRBI) – Jeanette Meadway – Director, Mildmay
AOB – next meeting etc

Post meeting report word document [80 Kb]

PowerPoint Slides from the meeting
Feedback from Toronto [1.92 MB]
Background to dementia [656 kb]

Post Meeting Report

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


The chair welcomed participants.


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

Link to top of page

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

  • FOR — increase earlier testing, reduce stigma, and
  • 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

Link to top of page

3. Toronto feedback – Simon Collins

PowerPoint presentation on line: [1.9 MB]

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

Link to top of page

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).

Improved on ARVs – discussed referral to Mildmay – but he wanted to go back to France. Shows that complicated – i.e. rational on some aspects of his health. Then liaised with French healthcare etc and he returned to France.

Not re-scanned – sometimes results add nothing – sometimes act as advocates – if test is distressing – press for scanning when treatable condition.

Q- referral by gender?
A- more men, but probably related to Brighton population

Link to top of page

5. HIV Related Brain Impairment (HRBI) – Jeanette Meadway – Director, Mildmay

PowerPoint presentation online: [656 Kb]

The Mildmay is a referral only centre – no block NHS grants – per/patient per day fees.

First opened in 1988 – predominantly gay men, mainly pastoral care, most people died, emphasis on quality of life/death.

Then changed to more African patients, and families – specialist family clinics – often both mother and child would be HIV-positive and ill at the same time. Some use for respite – good rest and nutrition.

Third shift was related to HIV related brain impairment – working as consultant in Newham – nowhere to send erratic patients. Started special unit for these patients – but services are very different now.

Also, with so few children born with HIV, and generally healthy mothers – family care centre has closed (though nursery is still open).

In-patient care is now almost entirely HRBI

Can’t chose patients – have to be referred and paid for by local authority/trust. Therefore people need to agree funding first – so often hear at later stage of illness.

Some groups of PCTs have specific contracts, but only budget estimate, and not paid if that service is not used, i.e. not guaranteed income, also, extended stays not covered.

Often groups of PCT work together.

What is dementia?

  • AIDS-defining illness with WHO definition
  • Objectively defined decline in recent memory
  • Evidence of HIV infection
  • Exclusion of OI, tumour, etc
  • Absence of acute brain syndrome (delirium)
  • I.e. a diagnosis of exclusion

Caused by HIV directly affecting to brain – but no HIV in brain cells or peripheral nerves – but does exist in macrophages and glia cells – and they are in brain. Perhaps caused by cytokines (TNF-alpha, interleukins etc) – chemical messaging.

Something is definitely happening because of cell death ‘apoptosis’ is documented

This is important – something physical is going on in the brain – not psychological effect – as physical as a broken brain. Symptoms overlap with psychological problems though – an organic disease.

Diagnosed mainly on function, rather than test on brain. Biopsy is incredibly invasive – never done.

Affects in 3 main ways

  • Cognitive function tests — memory related etc;
  • Motor dysfunction
  • Behavioural change

Dementia mainly diagnosed in late HIV disease – though likely to be having an effect from early disease – but usually diagnosed when very advanced disease.

Now, some people are diagnosed with HIV only after scan.

Insight often disappears with symptoms – i.e. avoid HIV tests.

Q-standard index of dementia?
A-a lot of scales depend on co-operation, and if behavioural change is important – refusal to test etc – needs to also be scored. Mildway uses HIV Dementia Scale – uses patient as own control, not used for diagnosis, just to track improvement or deterioration.

Q-How to differentiate if related to HIV?
A- will cover that….

Scans will often show brain shrinkage – similar to Alzheimer’s, sometimes white matter shrinkage (not seen in Alzheimer’s).

Brain shrinkage – literally larger gap for SCF – or white matter shrinkage

Scans – show with nose at top – i.e. frontal lobes at top too – affect behaviour – insight, social interactions. Particularly affected in HIV. People don’t go happily quietly forgetful.

Very challenging behaviour – very marked. No awareness of interpersonal space, interrupting, shouting at people,

Never smoking individuals – started smoking, previous smokers, chain-smoke. Same pattern for alcohol – forget last drink/cigarette.

Compulsive eating and drinking,

High aggression – i.e. ex-soldier raised this

Prognosis – was always death within 2 years with worsening symptoms

Mildmay don’t used ‘dementia’ – use term HIV-related brain impairment (HRBI)

Includes HIV-related illnesses – but not HIV-related brain impairment caused, for example, by alcohol – won’t respond well.

Benefit from medications being related problems

Multi-disciplinary approach

Practice conversational skills in groups

How to go shopping, how to write lists, how to use stories,

Detailed work

Q-other centres for this?
A-no other specific centre that specialise. Some units are general (not HIV-specific) i.e. after car accidents, after neurosurgery

Key points: HRBI

  • Not only HIV dementia
  • Includes PML (JC virus) — may respond to ARV
  • Cerebral toxoplasmosis — protozoa — bigger — easier to see in microscope
  • Herpes simplex virus encephalopathy
  • Cryptococcus meningitis
  • Cerebral lymphoma — prognosis is worth but can improve dignity and quality of life
  • Other — TB meningitis etc

May respond to rehab and ARVs

See slide – brain abscess – white ring round darker interior – like an abscess. Increased blood supply shown as the ring. Very physical and organic. Site of lesion will generate different symptoms.

Cryptococcal meningitis – more insidious than bacterial meningitis. Can show as weeks of headaches, varied symptoms.

PML – ‘progressive’ multifocal leucoencephalopathy

Prognosis – can be months – completely debilitating – affects different places, which generates different symptoms – but can affect any brain area.

HRBI rehab – initially entirely patient focussed – i.e. patient choice to medication etc – ARVs needed a shift in medical care – to separate ‘right to choose’ type questions, especially when using more nurses from outside of palliative care.

Had to study results form patients who discharged – all deaths were in people not on ARVs.

Needed intensive team involvement – and this development into rehab did come form palliative care.

Now get few ARV-naïve patients which generate such dramatic advances, but still get big changes that determines better and more appropriate long-term placements.

Some patients return to live independently etc.

New type of dementia – based on Case at Mildmay – Intl Jour STD/AIDS

Restarted ARVs but died despite <50 VL and improved CD4 count – and completely improved symptoms – i.e. walking again, simple conversation, though memory still gone. Insight to memory loss.

Thought immune reconstitution effect – i.e. body mounting a big response to small problem.


  • HIV-related brain impairment — cognitive changes with or without behavioural and motor impairment
  • Occurs in advanced HIV disease (though infection is probably much earlier
  • Most improve with ARVs
  • Improvements form rehab team
  • Rehab allows easier placement and improved QoL
  • Deterioration on ARVs is uncommon

Q-choice of ARVs with better CNS penetration?
A-Mildmay doesn’t prescribe but sometimes suggests. Tend to find HIV lead centres do what we’d recommend. Most use AZT for CNS penetration, even PIs seem to do well though – aim is to reduce HIV in blood and this seems to be the key factor. High dose AZT though doesn’t appear to help any more. Bottom line is using an effective ARV combination, and finding a way to ensure adherence is very high.

This research include vast differences in different patients – always look at studies carefully.

Q white matter shrinkage?
A-one study showed reversal on Saquinavir – just a case study

Evidence that rehab works form Mildmay is very important – highlights importance of multidisciplinary approach at other sites in the country – not always a medicated answer.

Q-Effect of starting at CD4 200?
A-speculation – don’t know if earlier treatment will avoid dementia. However, people responding well to treatment seem to do well on ARVs, even starting at 200. Can’t speculate any more on long-term effect. Likely to be some, but not many new related HRBI form short delay of 1-2 years starting treatment.

Link to top of page

6. AOB – next meeting etc

The next meeting will be on Friday 24 November, 2006

Link to top of page

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