tired of the AIDS bureaucracy - TheBody.com's Bulletin Boards

Although I do not have HIV, My live-in lover of 5 years does.
When he became ill, he had no idea of his positive status and
was, of course, uninsured. As a result, he had to apply for SSI
and Medicare. He was, at the time, a small business owner, not
making a lot of money, but getting by. I had my job too, so we
were doing okay. But when IT happened, he had to turn his
business over to me so that he didn't make too much money and had
to have his doctor declare him "disabled" so that he could bring
in that extra income we were so desperate for. Now he is doing
great. He has responded quite positively to the drugs with few,
if any, side effects and is able to do quite a bit of manual
labor in order to help me. I consider this a blessing, not only
because I would never be able to do all the work on my own, but
also because being able to work is great for his psyche and
consequently for his health. BUT he has to work for free so the
government doesn't take away his Medicare, without which, we
would never be able to afford all the medications he must take.
He can never own a house or start his own business or make any
significant money of his own. There is no way he will ever be
able to get health insurance, because, to the insurance
companies, he is certain to be hospitalized or die any time now.
Never mind the fact that there are many people living with AIDS
now for decades and never mind the fact that he has not been ill
in over two years and his viral load is undectable. He is in his
early thirties now and I see the probability of him living a full
life, but try to tell that to Uncle Sam. I, like you, am sick of
the AIDS Bureacracy and the way they effectively tie the hands of
people with AIDS. I am sorry I don't have any words of
consolation or some sort of solution. I only have my story
combined with anger and frustration at these things which I
cannot control.

Post Extras: Remind Me!