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UK-CAB 30 - Meeting Summary Report

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31 July 2009

At the MRC Clinical Trials Unit, 222 Euston Road, London, NW1

• Summary
• Full Meeting Report
• Presentations
• Programme
• Background Reading

Summary

The meeting had 26 attendees, 10 of whom were from outside London. The meeting theme focussed on what it means to be an advocate.

Draft BHIVA Guidelines
Routine Monitoring of HIV Matt Williams led the discussion. This is the 1st guideline of this kind and was still out for consultation and is supposed to be published by October 2009.

There are old and new issues some of the unsettled issues include: Pregnancy testing for women who may start/are on ARVs; GP/HCW communication; Some aspects of initial work; Late diagnosis and Adherence

Isssues not covered: Patient communication; People lost to follow up with doctors being charged for patients; Pain management and Cancer screening (but no to routine HPV screening for men).

Definitions of Advocacy
This was a Scottish example of advocacy by Michael Marr which he felt was applicable in making members understand how his organisation uses advocacy. The main themes of advocacy are:

• Safeguarding people who are vulnerable and discriminated against or whom services find difficult to serve.
• Empowering people who need a stronger voice by enabling them to express their own needs and make their own decisions.
• Enabling people to gain access to information, explore and understand their options, and to make their views and wishes known.
• Speaking on behalf of people who are unable to do so for themselves.

Principles of advocacy:

• Advocacy puts people who use it first
• Advocacy is accountable
• Advocacy is free as it can be from conflicts of interest
• Advocacy is accessible

Types of advocacy:

• Active information, sign-posting and explanation
• Casework
• Advocacy, representation and mediation

Denver principles
The Denver principles are from 1983 from a group of people living with AIDS got together in Denver and wrote a manifesto of self empowerment, known as the Denver Principles, for those living with HIV. The Denver Principles demanded that the voices of people living with HIV be heard. It asserted the right of people living with HIV to participate in the decision-making processes - at all levels- that would fundamentally affect their lives. Members were urged to look up the NHS principles from the constitution, and the Kennedy report with 101 recommendations on how the Denver principles have been adapted with NHS care.

Advocacy Training in Practice
Winnie presented the i-Base pilot Advocacy training programme. The need arose from a research on assessing treatment information needs of Africans living with HIV. Phase one was a structured two-hour training session with a manual has been run at Body and Soul charity during their drop-in and facilitated by two –Base staff. Phase 2 took on 12 aspiring treatment advocates through eight weeks of training. Some of the participants are ready to co-facilitate Treatment sessions and also ready to become active UKCAB members. Another training programme is set to start late September 2009.

Bernard Forbes shared his experience from Wharfside clinic.

Bristol Myers-Squibb (BMS)
Company pre-meeting was led by Simon – mainly set the agenda for the afternoon and ensure that members know what drugs BMS manufacture and have any questions ready. The issues to be raised from the membership were:

• BMS products updates
• Atazanavir
• side effects (TDM)
• Alternative dosing
• Individual dosing
• Tenofovir interaction
• Efavirenz
• Side effects (TDM)
• 100mg paed formulation
• Atripla
• D4T
• ddi
• DAD study support
• Secure the future update (treatment as prevention)

Feedback from IAS conference:
Simon Collins gave feedback from International AIDS Society (IAS) conference that had just finished in Cape Town, South Africa. It was a scientific treatment conference and he highlighted on:

• Prevention: ARVs (adult, MTCT, breastfeeding), circumcision, STI management, microbicide, vaccine
• DART and sub-studies
• abacavir and heart disease – impact of renal disease analysis needed by D:A:D
• New drugs: GSK integrase
• Other ARV studies (ARTEN, LPV/r once daily, darunavir monotherapy, maraviroc, raltegravir 3 yr, FOTO)

Next meeting: 23 October 2009, Topic: Aging and HIV

Presentations

Draft BHIVA Guidelines Routine Monitoring of HIV

Matt Williams
writing committee community rep

Download as a PowerPoint Presentation [948 Kb]
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Current and future guidelines for routine monitoring of HIV

HIV Treatment Advocacy Overview

Michael Marr
Advocacy and Information Worker

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Definitions of Advocacy - Michael Marr

Advocacy Training in Practice

Winnie Sseruma
Treatment information provider

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An overview of the African outreach programme and treatment advocacy training

BMS Data Update

Dr Keith Aizen
Victoria Adamson
Bristol-Myers Squibb

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DDI and D4T safety update, CV risk, Naïve patients: BHIVA 2008: What to start with?, Role of ATV in Coinfected Patients, Evolution of Once-daily  Dosing, Patient Preference Studies.

IAS Feedback Cape Town 2009

Simon Collins
HIV i-Base

Download as a PowerPoint Presentation [11.2 MB] This is a very large file
Download as a PDF File [3.2 MB]

Prevention: ARVs, circumcision, STI management, microbicide, vaccine,
DART and sub-studies,
abacavir and heart disease, New drugs: GSK integrase Other ARV studies.