Words by Hadley Stewart - @Wordsbyhadley


The Brexit deadline is only months away and for people living with HIV, perhaps the most important questions are yet to be answered.

An unquestionable nervousness seems to be bubbling under the surface, with those who voted to remain in the European Union sounding alarm bells about the possibility of a reduction in medication supplies. On the other side of the political divide, those hopping on the Brexit bus are declaring that this is scaremongering. What is clear, however, is that everybody is scratching their heads about what is actually going to happen when we leave the EU. The question is, can people living with HIV afford to be left in the lurch?

A LACK OF INFORMATION

“It’s very scary,” says Steve from south London. “Nobody can answer the question about the availability of medications.” Anxious about the supply of his anti-retroviral therapy drugs, Steve turned to a leading biopharmaceutical company for answers, but to no avail. “I’ve discussed last week with my consultant, who says the message coming to her through NHS channels is that there won’t be a supply problem. Interestingly she said I was only the second patient to raise the issue!”

Despite reassurances from his consultant, Steve still does not seem convinced that his medication supply will not be cut off, or significantly impacted, by the UK’s divorce from the European Union. In fact, he questions why this issue was not looked at more closely prior to the referendum being announced. “This should have been raised a long time ago for people living with all types of life limiting disease reliant on medication,” remarks Steve, who echoes similar arguments made by clinicians and researchers across various sectors of the health service.

Would question marks being raised over medication supplies have influenced the result? “If people had been made aware of the potential for change or interruption to supply, then I think it would have altered their vote,” believes Steve. He admits that, having voted to remain, these reservations would have simply strengthened his political stance. “The government should be making public statements about the effect of Brexit on supplies of medication, and about what clinical practitioners should be saying and doing to and with their patients.”

The complexity of politics, Steve believes, may result in people not feeling able to voice their concerns: “I know people who are frightened but also lack confidence to talk with their doctors.” Having already approached the pharmaceutical industry and his doctor with his questions, Steve is reluctantly turning to his MP. “I’m probably now going to make an appointment with my MP,” he says, but admits that he does not think that even politicians hold the answers.

KEEP CALM AND CARRY ON

“Obviously the fear around Brexit has been stirred up by Remainers playing on people’s emotions,” says Max from Liverpool. “Health, travel and housing are all things that those wishing to stay in the EU are saying will get worse. How do they know?” Having voted to leave the EU, Max says that headlines about medication supplies in post-Brexit Britain have clouded the positive aspects of gaining independence.

“It would be an almost apocalyptic situation if everybody needing medications couldn’t access them – I doubt that scenario is something that would actually happen in the twenty-first century.” As for where the UK might access their medication supplies after leaving the EU, he seems to have an idea: “The US seems like an obvious source of medications. The whole point of Brexit is for us to decide our own rules, and that could mean developing new partnerships for medications and research with other nations.”

Max seems certain that there will be a plan in place to safeguard medical supplies, and ultimately the health of those living with HIV, once we leave the EU. Yet given the uncertainty looming over Westminster at the moment, can he see why people are nervous? “It could be better,” he reasons. “But then again, nothing in politics is black and white. There’s always an uncomfortable grey area, which could be said about any significant political decision.”

EXPERT PESSIMISM

“Any form of Brexit is likely to delay access to new treatments,” explains Matthew Hodson of HIV organisation, NAM. “During discussions with people who work in the pharmaceutical industry at the International AIDS 2018 conference, I was told that a Brexit without a joined up medical regulatory agreement with the EU would push the UK towards the back of the queue in terms of licensing of new drugs.” He also predicts that the size of post-Brexit Britain’s pharmaceutical market would “simply be less of a priority.”

On an personal level, Matthew also shares concerns about his health after Brexit. “As someone living with diagnosed HIV my health depends on access to treatment,” he says. Echoing Steve’s views, Matthew also thinks that the government’s post-Brexit position would let down people living with HIV: “I am appalled by the government’s nonchalant attitude towards a ‘No Deal’ Brexit, which threatens the medicinal supply chain.”

But is this not just an attempt from the Remain camp to coax the public into even stronger division?

Matthew does not seem to think so. “I know some people will always claim that any concerns are just Project Fear,” he recognises. “But we are clearly now looking at a No Deal Brexit as a possible outcome. I am not hearing sufficient assurance from the Government that they have more than short term plans in place to deal with this.”

The UK’s HIV testing and treatment targets may also have the wind taken out of their sails once we leave the EU. Currently towards the top of the global league tables, it may tumble down the ladder in the event of a lack of access to treatment. “96% of those who are diagnosed are on treatment, and 97% of those are undetectable and so can’t pass the virus on to their sexual partners,” says Matthew of those living with HIV in the UK. “Our achievement is threatened if the treatment supply chain is threatened.”

Unlike Max, Matthew is unquestionably anxious about accessing vital medication once the March deadline passes. “My health, just like the health of all other people living with HIV in the UK, is dependent on uninterrupted access to lifesaving HIV treatment,” Matthew says. “Empty assurances that everything will be OK just aren’t enough right now.”

Nobody can predict the future, but the rumblings of uncertainty surrounding medication supplies for those living with HIV can be heard from both camps. While those who voted to remain claim that Brexit will put lives at risk due to changes in supplies and research funding, others argue that these claims are hyperbole and simply another tactic to divide our country.

The future health of people living with HIV lies in the hands of Theresa May and her government – it remains to be seen how she will safeguard supplies and ultimately ensure that the decades of HIV testing, treatment and research will not be undone.

“I’m not worried about my health, because I know that the government won’t just leave the thousands of people in the UK living with HIV without medication,” says Max.


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