Dear Mrs O Neill.
As the issue of a PrEP roll out continues and our Department of Health toes the line of sighting a NICE review alongside a proposed pilot scheme, I feel my only option is to write, with respect, an open letter to you and hope that my persistence on this matter is not at my peril, as well as hoping human nature, not politics will prevail in your response .
With naivety it must be admitted that on the day of being diagnosed in 2013, I had no idea a preventative treatment for HIV was approved by the FDA in 2012, I had heard how close society was to having such a treatment but to a certain degree, we always hear about being close to this treatment or that cure so at the time I dismissed it as preemptive reporting, believing when a treatment was developed it would undoubtedly make front page headlines around the world with governments fighting to get their hands on it, however that has not been the case.
Most world headlines did not herald a new era in HIV while governments have barely flinched. After learneing of PrEP’ existence, at first, hesitation by those with power to act on its approval did not make me angry for my sake, mostly I thought it was too late for me and the best thing to do was focus any anger on advocating it’s approval to prevent people from being diagnosed in future, that is still my immediate thought, yet as time passes and the NHS/HSC continue to procrastinate I increasingly feel like every person who has been diagnosed with HIV since 2012, along with those who will be diagnosed between now and a national roll out, deserve an explanation as to why this process has dragged on for so long and why it has centred around politics instead of compassion.
To some people this might seem unreasonable but as a society we endorse institutions like the HSC and allow our tax money to pay the wages of its CEOs because they exist to take care of these matters, when they fail to do so or fail to do so with the ability we expect, why shouldn’t we seek an explanation? If an employer tells an employee it is their responsibility to complete task x, y, z and they fail to do that, he or she will be expected to explain why, this is the exact same situation.
In my first response from the DoH it listed off how much great work is undertaking by that department to help people living with HIV, which to a certain degree is true, but this person with HIV has to travel nearly 3 hours on a round trip for professional, dedicated support because the only centre we have in NI is based in Belfast. I would be insulting your intelligence to point out that everyone living with HIV in Northern Ireland are not based in Belfast but will ask if you realise how insulting it was to receive an email from your department that very egotistically rhymed off a list of work it does while I sit here crying out for more support in rural areas?
The Department of Health might be able to say it is doing something but from someone on the brunt end of the stigma and lack of support, it is not enough.
As our newly appointed Minister of Health I do not feel you responsible for creating a clear disparency between living with HIV in a rural area when compared to an urban area, I also do not feel you responsible for the fact that after 4 years and thousand of diagnoses, a preventative treatment for HIV is being cruelly dangled over societies head, but I do feel you are now responsible to do something about all this. It cannot be said the DoH is not aware of these issues, I have contacted the department privately about PrEP and subsequently about the personal issues I face as someone living in rural NI with HIV following which I received a very bare,apathetic response saying that my comments “had been noted”, now I am reaching out to you personally and publicly. Much of what I have said here Sinn Féin is said to stand for, accountability in governance, community, health, so it is on this basis as well as you being Minister for Health I hope you will act on this letter by responding with humanity and understanding, something that has been missing to date in the response from representatives of the DoH.
Go raibh maith agat, saol fada, agus breac-shláinte chugat.