The HIV sector is currently waiting on the announcement of the public consultation on Pre-Exposure Prophylaxis (PrEP) and HIV prevention in the UK - widely expected last month.
This public consultation is one of the final steps before a decision is made on NHS availability for PrEP- the HIV game changer - already available in the US, France, Canada, Israel, and Kenya. The consultation response would form part of a submission to the Clinical Priorities Advisory Group (CPAG), the body that says 'Yes' or 'No' to PrEP at its next meeting in June.
However a public consultation takes time - up to 12 weeks, and at a minimum 30 days. With Easter rapidly approaching this means that time for a full consultation to be carried out, reviewed and the results compiled in time for CPAG is now alarmingly limited. We have gone from final stages, to nothing, and only NHS England knows why, as all we have heard so far is radio silence.
In the past twenty years since I was diagnosed with HIV, the advances made in treatments have been quite staggering. If the great challenge of the generation before us was to maximise life expectancy and quality of those who were HIV positive, then our current one is surely prevention.
Condoms are still one of the most effective ways to prevent HIV, but perfect condom use is not a reality for everyone and, despite significant effort , 2,600 men who have sex with men (MSM) are infected with HIV in the UK every year - a figure that has not really changed over the last decade.
In PrEP we have another option for our arsenal. It's a pill, taken once a day, before sex, by HIV negative people who are at high risk to prevent the transmission of HIV. We know it works, and we know it can be cost effective, when targeted at those most at risk.
Even though the UK based PROUD study demonstrated an 86 per cent reduction in HIV transmission in MSM, it is still not available through the NHS. Currently it is only available privately, at a prohibitively expensive £400 a month for a prescription of Truvada (the drug taken for PrEP). Some people are also getting generic Truvada online, from abroad, which while cheaper at £50 a month, can be difficult to obtain, with understandable concerns about quality of the drug. So we now have a real inequality issue that some of the most at risk people have a new way to protect themselves from HIV - PrEP - but only if they can afford it.
While England lags behind the rest of the world is already realising the potential of PrEP. Following a successful trial of using PrEP and successful treatment for people living with HIV, which nearly eliminated any HIV transmissions, Kenya announced the availability of PrEP in the latter half of last year.
PrEP availability has also been cited as integral to San Francisco's success in bringing down HIV infections, with only302 new HIV diagnoses last year, their lowest ever recorded number (against a peak of 2,332 in 1992). A San Francisco study of 657 patients on Truvada, over a two-year period, reported no HIV infection.
With France and Canada also taking up the World Health Organisation's recommendation that access to PrEP form part of a 'comprehensive prevention package' for at-risk men who have sex with men, England is now dangerously falling behind.
As we continue to see 500 people diagnosed with HIV every month in UK, the pressing question is how many could have been prevented by PrEP. Every month, and every person, counts.
I know that cost to a cash strapped NHS is a core consideration, especially for introducing anything new, -but the NHS spends over £500m a year on HIV treatment, with estimated individual lifetime HIV treatment costs of up to £360,000. A year of PrEP (Truvada) costs £5,000 and the PROUD data shows that we would only need to treat 13 men for a year to prevent one HIV infection.
At Terrence Higgins Trust our campaign "STOP HIV. PrEP NOW" is so called because that what PrEP could do - stop the spread of HIV. Work on PrEP - the potential it has for HIV prevention, and negotiating its availability on the NHS, through many official channels and throughout the HIV sector has been ongoing for almost two years. But now, nothing - silence.
Time is running out and we need answers. Email Simon Stevens, Chief Executive of NHS England here and use the quick and easy action to ask him to make the PrEP consultation available immediately.