The Department Of Health Doesn't Know Who's Responsible For The HIV Prevention Drug
Last week, NHS England said it wouldn't provide the drug that blocks HIV because it's not responsible for doing so. But who is? BuzzFeed News went in search of answers.
The Department of Health still can't say which public body is responsible for providing the drug that protects people from contracting HIV, more than 10 days after NHS England sparked a furore by announcing it would not provide it.
Despite being asked a total of 11 times by BuzzFeed News who was responsible, and despite being shown a leaked letter from the public health minister that suggested who was responsible, a DoH spokesperson was unable to provide an answer.
NHS England stunned HIV charities on 21 March when it said it would not be making the medication – brand name Truvada – widely available as it wasn't its responsibility. Charities condemned the decision as "shameful", adding that the drug could prevent thousands of people from contracting the virus.
But NHS England, which said instead that it would give the medication to 500 people in "test sites" around the country, claimed it could not offer the drug more widely as it was the responsibility of local authorities to do so. The two main organisations representing local authorities, however, said offering it widely was not councils' responsibility and that in fact, it was NHS England's. The issue has been stuck in this stalemate since.
The row hinges on whether the drug constitutes HIV medication or HIV prevention. HIV medication is the responsibility of NHS England, while HIV prevention is the responsibility of local authorities.
Truvada, however, is an antiretroviral drug. This means that it is used in the treatment of people who are already HIV-positive, in combination with other drugs. But on its own it is also used to prevent HIV, in a regime known as PrEP, or pre-exposure prophylaxis. It is therefore both an HIV treatment and an HIV prevention.
In a further twist, NHS England also provides Truvada for people who have recently been exposed to HIV in order to stop the virus taking hold – a prevention method known as PEP: post-exposure prophylaxis.
Earlier this week, an email from Jane Ellison MP, the public health minister, to Rushanara Ali MP – who had asked for clarity on the issue – was passed to BuzzFeed News by a source.
Ellison wrote in the letter, just three weeks before NHS England's announcement: "NHS England commissions HIV treatment services, including antiretroviral drugs, irrespective of how they are used. Local authorities are responsible for commissioning HIV prevention services."
The letter continues: "An impact assessment is being completed to determine the impact not only for NHS England of funding the drugs but also for local authorities, given their role in commissioning HIV prevention."
Ellison added: "NHS England has set up a Policy Working Group (PWG) to develop a policy proposition for the commissioning of PrEP."
But when BuzzFeed News put the contents of the letter to the Department of Health, asking who was responsible for providing PrEP – NHS England or local councils – the response, initially, was this statement:
"NHS England will be running a number of test sites to use antiretroviral drugs to prevent the spread of HIV. These test sites will seek [to] show how PrEP could be commissioned in the most cost effective and integrated way to reduce HIV and sexually transmitted infections in those at highest risk.”
Since this response did not answer the question posed, BuzzFeed News telephoned the DoH to ask again. The first time we asked who was responsible for providing the drug, a spokesman said: "The line I sent you is all I can say at the moment."
So we asked again, suggesting that the department must know the answer as for the last 18 months NHS England has been discussing the commissioning of the drug with a range of interested bodies, giving the impression to HIV organisations that NHS England was responsible.
An NHS England circular, revealed by BuzzFeed News last week, states: “NHS England is the responsible commissioner for all antiretroviral drugs (ARVs), including where they are used in HIV prevention." And while NHS England now claims it is not responsible, we pointed out that local councils dispute this and Ellison's letter said NHS England was responsible for commissioning antiretrovirals "in all circumstances".
The spokesman replied: "All I can say at the moment is that these issues you're talking about are being worked through." But surely, we suggested, someone must know currently who is responsible for commissioning these drugs.
"That is something that is being worked through," repeated the spokesman. BuzzFeed News asked yet again – specifically, who has legal responsibility given that NHS England already provides PEP (the post-exposure prevention treatment) and local councils do not commission any other drugs.
"The responsibility, or how the programme will be implemented, and who will be implementing it, which is the same thing as who has responsibility for it, all of these issues are currently being worked through," replied the spokesman. "I don't have any more information than that."
BuzzFeed News asked for the sixth time. "Prevention is the responsibility of local authorities, treatment is the responsibility of the NHS, but what we're doing at the moment is nailing down where this [PrEP] will sit," said the DoH representative.
So, we asked, does the Department of Health not know who is responsible for commissioning PrEP?
"It's not about saying we don't know who is responsible, it's about a process of work is going on to to determine how the programme will look and who will be commissioning it..." began the spokesman. And in the meantime, the department does not have a position on who is responsible?
"We can't have a position till we've worked it through," said the spokesman. So if there were a legal challenge to NHS England's decision, asked BuzzFeed News, the department could not say whether NHS England was indeed responsible?
"At the moment I can't say what we'd say," he replied.
After 10 attempts, BuzzFeed News suggested it was unusual for the department not to have an answer as to who is responsible for funding a drug.
"I can only tell you what I've told you," the spokesman replied. "There's a piece of work ongoing to determine who will be the responsible commissioner for this. I hope that won't take too long."
Deborah Gold, the chief executive of the National Aids Trust, told BuzzFeed News she was staggered the government did not know who was responsible.
"It's extraordinary and unacceptable that 18 months after the NHS started looking at how to commission PrEP it still doesn't know the answer to that question," she said. "With every passing day people are at risk of getting HIV that could be prevented if only they had access to PrEP."