Activists focus on HIV+ fears, expectations and needs
The long-term needs of people with HIV are the focus of a statement from a new collaborative group.
Unite came together for the first time recently to put together a “Consensus Statement” that defines the considerations and actions that needed now to manage the health of men who have sex with men and are living with HIV.
This is the first time a group like this has come together to discuss the long-term issues and reached a consensus on what action is required.
Unite comprises 7 key HIV spokespeople: a HIV consultant, HIV community groups, charities and publications.
Gay Men Fighting AIDS, Terrence Higgins Trust, UK Coalition of People Living with HIV and AIDS, +ve and Positive Nation magazines are all members of the Unite Advisory Panel, which is supported by an unrestricted educational grant from GlaxoSmithKline.
The success of highly active antiretroviral therapy has given rise to new challenges for people living with HIV, as highlighted by a recent UKC survey into the long-term impact of HIV.
Unite want HIV professionals to consider patient fears, expectations and needs when devising the best long-term care for the estimated 66,000 people living with HIV in the UK.
With fewer deaths from AIDS-defining illnesses and life expectancy similar to the general population, the focus for people living with HIV has shifted to concerns over the long-term effects of their medications rather than illness caused by HIV infection.
The survey also highlighted a desire for more information about the long-term effects of HIV treatment.
The Unite Advisory Panel, chaired by Dr Simon Portsmouth, Consultant in HIV Medicine, St. Mary’s Hospital, London.
He told PinkNews.co.uk:
“As therapy for HIV evolves and improves it is important for those providing care to keep in mind the changing fears, expectations, and needs of their patient groups.
“The role of the HIV physician has changed and we must ensure our patients have safe and confidential access to health promotion activities in primary care or within our own services where funding allows.”
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The Unite Advisory Panel recommends the following actions and initiatives:
Treatment comparison charts – written information (for single and common drug combinations) summarising the pros and cons of different medication regimens, including short- and long-term side effects; this could be given to people who are due to start HIV treatment to help them make an informed decision.
Patient-clinic contracts – a checklist of core issues that should be addressed at every clinic visit; this could act as a reminder for both patient and healthcare staff to ensure important information is communicated and reviewed on a regular basis.
A patient information charter – a set of minimum standards governing the provision of patient information; ideally, each HIV clinic would have a dedicated, appropriately trained patient information officer who is responsible for the provision of up-to-date, comprehensive, consistent, authoritative patient information.
National HIV treatment survey – an annual comprehensive cross-sectional survey using questionnaires and face-to-face interviews, aiming to give an in-depth understanding of the current management of people with HIV and to identify areas of unmet need.
The Unite Advisory Panel will convene again in July to decide how to take the Consensus Statement forward.