May/June 2016: Volume 17 Number 5/6
It is difficult to write this editorial for HTB.
We learned earlier this month of the death of Paul Blanchard, one of the founders of HIV i-Base, and one of our colleagues from AIDS Treatment Project (ATP) who had a dramatic impact on treatment activism in the UK – and changed the standard of care for people living with HIV.
Paul taught us to focus on the science in order for our activist demands to be more than just a wish list. Virtually no-one at ATP had a scientific background and we had to learn how to understand how to critically evaluate evidence – good and bad – from scientific research. This training – supported by some of the UK’s leading doctors and researchers – enabled ordinary people to have the power to question advice and opinions from doctors and friends and to distinguish both from pharmaceutical company marketing.
In 1996,the information we gave to people calling the ATP phoneline who were only being offered two rather than three-drug ART, included how to register at a clinic that would provide the best care – because the evidence supported using at least three drugs.
i-Base is an activist organisation, so it is particularly difficult when NHS England ignores best scientific evidence – or worse in the case of the decision to block access to PrEP – and constructs bureaucratic reasons to restrict drugs that are increasingly available globally.
However difficult and high a person’s individual HIV risk, UK doctors are unable to prescribe commonly used drugs for a new indication. This challenges a doctors duty of care when sitting with a person that they strongly believe will become HIV positive within the next year.
It is similar to telling a doctor that the can prescribe ART to an HIV positive person to prevent HIV transmission but not for their own health care if their CD4 count is above 350. Oh, wait, that is currently the case too.
So while being HIV positive doesn’t necessarily mean someone will live a shorter life, an HIV diagnosis is still a life-changing traumatic event. It also makes someone dependent on medical care, that will probably be lifelong.
As a result of the decision to block PrEP, services for PEP are likely to be further destabilised. Even with the waste this involves, i-Base supports this way to access PrEP – similar to the information in 1996 to change clinics to get better care. The NHS does run on a postcode lottery for treatment and finding the right clinic is an important individual option when the NHS bureaucracy squabbles.
We include a new “UK guide to PrEP” as a supplement with this issue of HTB. Although originally written to support people buying generic PrEP online, it is just as appropriate for people accessing PrEP from PEP clinics.
Further news in this issue includes conference reports from four medical conferences: BHIVA, EASL, CROI and the HIV and Women Workshop. And global news about access to better treatment – notably integrase inhibitors for HIV and direct acting antivirals for HCV.
Our fight to use best available scientific evidence to drive better medical care continued in large part due to the example and inspiration from Paul Blanchard, and it is in a very small way, our tribute to a colleague and friend who we will miss deeply.