It would seem to be a question, why would we create another non-profit organization dedicated to the problems of people with HIV? It seems like the state constantly declares that it cares about early detection of an infection, and about medicinal maintenance of patients. But here's the thing. I am quite a successful HIV-positive patient, registered in the very Moscow where there is no drug shortage yet; by virtue of my profession I am familiar with top officials responsible for the fight against HIV, I always received the necessary consultations.
But after December 1, 2015, when I publicly disclosed my HIV status, I started receiving tons of letters showing the other side of reality. I was talking with people with such problems in person, via Skype, via secure messengers – many of my confidants hold positions in the State apparatus and they prefer not to disclose themselves. I was shocked by some facts: for example, how many Moscow residents have a permanent registration? And how many people work here, paying taxes in the city budget? As we understand, in megapolises the HIV feels itself especially free. Literally, screams: how to bypass the Moscow AIDS center requirements for the permanent registration? Is it possible to bribe someone to get the therapy? These questions were asked by the most conscious, those who accepted their status and were ready to fight against the disease. According to my interlocutors' messages, they paid for their first HIV analyses, the first quantitative analysis of immune response and viral load cost them around 10-11 thousand rubles in a private medical center. If a person does not have these 10,000, we've lost him/her. He/she will get used to the status and will get to the doctors' hands already at the AIDS stage. Even small operations, for example, dental implant surgery – everything becomes a problem for an HIV-positive person. Private medical centers increase prices due to "risk", and insurance companies terminate VHI (Voluntary Health Insurance) agreements, as it happened in my case.
This is exactly why, in my opinion, we need a foundation, which would be doing at least two things – lobbying changes in legislation aimed to provide equality for all HIV-positive people regardless of their registration place, which in itself is a state disgrace. The law must oblige regions to provide patients with a treatment at the expense of its budget, where a patient works and pays taxes. HIV, unlike the bureaucrats, is exterritorial. The second direction is to legally oblige every doctor who has a license, and every medical institution to provide medical care to a HIV-positive patient based on their Obligatory Health Insurance.
These are tasks of not one month, and perhaps not of one year, but help is needed right now. As the first directions, I would name personal support by the Foundation volunteers of everyone who contact it, so that a person who learned about his/her status and opened up to us, would not turn around after clashing with the first bureaucratic barrier.
The second one is to cover forced expenses for the initial examination: viral load and immune response.
The third one is to form the pool of loyal doctors of the widest range of specialities who would be ready to accept the HIV-positive patients – from otolaryngologists to neurosurgeons.
The fourth one is to organize legal consultations for patients facing the registration problems and, due to that, not receiving any drugs or medical care, up to drafting lawsuits and protecting their rights in the courts. All these are real problems, people told me about them, people, who trusted me after I disclosed my status. I managed to help some of them by finding sympathetic flat owners who were organizing 1-year registrations for them, doctors who would help them, sometimes against all instructions.
I hope that the Foundation that we've established, will be able to systematically solve such tasks, and will not lose sight of all those people who will trust us.