THE BLOG
06/02/2009 04:03 pm ET Updated May 25, 2011

AIDS in America 2009 -- Where oh where is Ryan White when we need him most?

Where, oh, where is Ryan White when you need him most?
My ongoing quest for Universal Healthcare in America

I have never met Ryan White though feel as if I have. In fact, I feel rather intimate with him, in spite of our lack of face time. Ryan White became a poster boy for HIV/AIDS in a time when we needed one the most. The ignorance of Kokomo, Indiana became the fuel for the fire that had to be the most influential program developed for people living with HIV/AIDS, just short of the actual medical treatments. I actually was in the same room (well auditorium) at the same time as his mother and sister. We were all attending the U.S. National Roller Figure Skating Championships in Lincoln, Nebraska (yup, I just admitted to that). His sister would go on to receive a medal in her free skating category.

Had I known at the time that her brother's legacy would be large part in the reason why I am still on this planet, I would have made sure we had actually met.

Ryan White is in trouble again - not the person, but the legislation. The Ryan White Act provides medical treatments for people living with AIDS that otherwise could not afford them. For me, this means my co-payments for most of my life saving medications are covered. My co-payments are on the incredibly high end because I have an individual policy. Thanks to the recent vote in California, actions required to save the state were turned down and now all things related to HIV/AIDS are being decimated in our State. Much needed money for prevention, treatments, and housing will be pretty much slashed to bits, leaving only the most destitute of cases to receive the remaining financial aid.

The component of the Ryan White Comprehensive AIDS Resources Emergency Act, first enacted in August,1990, four months after Ryan's passing, I rely on is the AIDS Drug Assistance Program. The Ryan White Care Act, as its commonly known, is the largest federally funded program for people living with HIV/AIDS, and is designed to improve availability of care for low-income, uninsured, and underinsured individuals with HIV/AIDS.

California announced just the other day the monies that were to be cut from the AIDS Drug Assistance Program for the state. I kept re-reading the announcement, trying to figure out exactly what this meant for me. How much was this going to cost me, in this time of funds drying up all around me? Where was the money going to come from in my budget that has already seen its own share of cuts? A deadly combination of fear and confusion led me to no conclusion so far.

Almost immediately after President Obama took office, he allocated $51 billion over 6 years to the Global AIDS Fund. However, the Ryan White Care Act has only recently received an increase of $54 million, bringing the current budget up to $2.3 billion. That amounts to barely a dent above the Bush Administration's financials. AIDS activists throughout the country had clearly stated that $614.5 million would be needed to keep up with the demand for drugs and housing. Given that people are living longer on these drugs, the numbers of individuals who require them only continue to climb. Part of the Ryan White Care Act also goes to Housing Opportunities for People living with AIDS, (aka HOPWA). With the current state of the housing market, people living on fixed incomes with AIDS are only being pushed further and further down the scale and, now, more than ever, need these funds.

I live in a country that just bailed out an automaker that it encouraged to go into bankruptcy after it gave said company $50 billion in loans so far - in exchange for an 80% stake in the company. We will probably never see a return on that investment. However, just imagine what we could have received if we had taken that money and put it directly into healthcare, for all people, not just those of us with AIDS. The human capital we have in this country once again takes second chair to the Shareholder Value.

Don't get me wrong. I am grateful for any and all assistance. I look forward to the day when I no longer have to rely on Federal Funds to save my ass. However, now, all it feels like I am doing is surviving, and this is not what promised to us. We all grew up in the 60s with unlimited dreams and seemingly unending resources with which to achieve them. Everything was possible in the great United States of America. We were the envy of the world. We were the richest nation to ever exist on this planet. Any one of us could grow up and become President. How democratic was that?

Instead, I landed in this America, this one that punishes you for having anything remotely related to a stigma. I came of age in an America where debt was king and greed ruled the land. I saw my entire circle of gay male friends die a horrible death in the 80s, a death that could have at least been stalled if the Reagan administration had uttered the word "AIDS" far earlier than it did. I held my boyfriend in my arms when he passed, at a time when people were landing plum jobs and buying their first homes. This disease, this virus that I would not come to know personally, until well after its introduction, has defined my life.

And I wonder. I wonder if my boyfriend got the better end of the deal and didn't live to see any of this horror and struggled for only a short time. And I feel sorry for myself, trying to figure out once again how to get through this next obstacle.

And I think of others with this disease, what they have gone through, and what they are dealing with now. I can walk, talk, write, complain, vent, contribute, muckrake and make my changes. I remember the individuals I met at the San Antonio AIDS Foundation, specifically my friend Josh, who recently came close to leaving us. I remember Jimmy at Joseph's House, who passed away shortly after I wrote about him. And I feel humiliated for feeling sorry for myself.

And I think what my deceased partner, David Burnside, would say to me. And I find the strength to go on in spite of this, my latest struggle with AIDS.