UK Community Advisory Board (UK-CAB)

CAB 85: EACS conference feedback, HTLV-1 study

Date: 17 November 2023
Venue:  Room 407, Birkbeck University, 30 Russell Square, London WC1B 4HS
Register for meeting: closed

Programme:

09.30-09.45 Arrival, tea and refreshments, expenses
09:45- 10.00 Welcome and introductions – Nicoletta Policek, UK-CAB chair

UK-CAB updates – UK-CAB SG member

10:00-11.15 EACS conference feedback – Nicoletta Policek, UK-CAB SG
11.15-11.30 BREAK
11.30-12.30 Human T-lymphotropic virus type 1 (HTLV-1) study – Daniel Bradshow, UK Health Security Agency
12:30-14.00 LUNCH
14:00-15:00 BELONG Project  (EATG) – Nicoletta Policek and Memory Sachikonye, UK-CAB
15.00-15.15 BREAK
15.15-16.00 Member updates/discussion
16:00 -16:45 Meeting reflection
16.45 – 17:00 Any other business

Meeting close

Presentation slides from the meeting

EACS conference feedback
Human T-lympotronic virus type 1 (HTLV-1) study
Belong study – EATG

Background reading:

Reduced-drug treatment becoming common in Paris
A French study has also investigated whether intermittent treatment – four days on, three days off – with a three-drug regimen is as effective as continuous treatment. The QUATUOR study found that the intermittent regimen maintained viral suppression as well as continuous treatment but with a slightly higher rate of virological failure after two years.

WAVE – Women Against Viruses in Europe 2022-23 report
WAVE’s mission is to promote the welfare of women living with HIV in Europe. The initiative involves healthcare professionals and community representatives. WAVE endeavours to promote equality of access to care and excellence in standards of care for women living with HIV. With the availability of new prevention strategies, WAVE is adding HIV prevention for women to its mission, aiming at building equal access and contributing to the body of evidence for using such prophylaxis for women.

Some women in France are using PrEP, but only transgender women tend to stay on it
A poster at the conference detailed the PrEP usage of 161 women attending one clinic in Paris between April 2017 and April 2023. It found that the majority of female PrEP users were transgender (60% of the total) and from South America (78% of the total). In common with many other PrEP studies, cisgender women were less likely than transgender women to continue PrEP for more than a few months.

Doctors alarmed by complex needs of elderly people living with HIV
While people over the age of 70 make up only 5% of the patient cohort (65 people) in the town of Matosinhos, Portugal where Dr Duarte practices, their medical histories are complex. They have been on HIV treatment for an average of 10 years (but some have been treated for 25 years), most have several co-morbidities and as a result, need to take multiple medications. Four in ten of those over 70 are taking ten or more pills a day, with some taking as many as 18 pills.

Human T-lymphotropic virus type 1 (HTLV-1)
The human T-lymphotropic virus type 1 (HTLV-1) was the first oncogenic (An oncogene is a mutated gene that contributes to the development of a cancer) human retrovirus to be discovered. It was first studied in 1977. The virus can cause adult T-cell leukaemia/lymphoma (ATL) and progressive nervous system condition known as HTLV-1-associated myelopathy or tropical spastic paraparesis (HAM/TSP).

BELONG project:
The inclusion/exclusion criteria for participation of people living with HIV in non-HIV clinical research has been an ongoing discussion, exacerbated by recent COVID-19 vaccination trials, which initially excluded people living with HIV. Exclusion criteria are based on clear scientific or clinical rationale which are non-negotiable in clinical trials, and there is concern from the HIV community that the ongoing cases of restrictive eligibility criteria without such rationale, often applies to people living with HIV.

Funding

  • Since 2011, i-Base provide admin support to the UK-CAB. Other costs are covered by grants to the UK-CAB. This includes support from drug companies for meetings.
  • Training courses are funded by specific grants, including from the Lottery Fund.
  • From 2008-2011 the CAB was supported by the Monument Trust. This allowed us to employ a part-time administrator.
  • From 2002 to 2008, running costs for the UK-CAB were supported by i-Base. Drug companies funding meeting costs.

We have always asked HIV drug companies to support the direct costs for UK-CAB meetings.

This covers travel and accommodation for members coming from out of London. It also covers the cost of catering. This industry funding helps support the CAB as a national project. A list of supporting companies since the UK-CAB was established in 2002 and from the most recent years is included below. 3

The UK-CAB membership and Steering Group decides the content for all meetings.

Meetings with a drug company covers their current products and future research. The decision for which companies to invite and the agenda for these meetings is made by the UK-CAB.

We also ask other researchers to involve the UK-CAB in planning studies and ongoing research. We ask that community involvement in research be included in the budget of grant proposals so that some of the CAB work can be supported in this way by independent research.