My Sunday morning began just like any other one, pretty much. I get out of bed and go through my self imposed morning yoga and then a perusal of the major news websites, catching up on the events that occurred when I was not looking. One item kept jumping out all over the place -- Senator Clinton could be our next Secretary of State. I immediately paused. I felt somewhat taken aback -- this person who had fought so tirelessly for my healthcare could be taken away from me.
I continue about my day, prepping that pile of pills for the day, making a mental note to remember to renew my AIDS Drug Assistance Program (ADAP). And I get worried. I have always taken great comfort in having Senator Clinton on my team. Without her in the Senate, who will fight for people with AIDS?
In spite of the fact that they have yet to confirm it, it seems to be common knowledge that very soon, President Elect Obama will officially offer Senator Clinton the Secretary of State position. I find this moment very, very bittersweet. First, I am thrilled that a person that I greatly admire and respect would be offered such an honor. Second, and I admit this is selfish; I am concerned over who will be our Health Care watch dog in the Senate. Senator Clinton has an understanding of the issues that face people living with AIDS that is second to none. Health Care has always been her pet issue, and under the Clinton Administration, our country finally started to take AIDS seriously.
Given the fiscal meltdown, we really need someone on our side, who is willing to fight for us every step of the way, and I honestly don't see anyone stepping up to the plate like she has for people living with AIDS. Lip service is all we get these days. President Elect Obama has consistently stated he supports the Ryan White Act, but nowhere does he state that it needs more funding. With the number of infections only on the increase, and with a greater demand for the life saving drugs, we need to stop sending money overseas and keep some of it here for our own citizens. Why is it such an ordeal to take care of our own problems first, and then help others?
How do I know Senator Clinton is on our side -- well to get Hollywood on you -- I have met her several times and have discussed these very matters with her. She gets us. She gets our troubles, our needs, our pain. She is on our team. If she goes global on us, I am not sure who will pick up that baton. Every single time we spoke, I always made sure to thank her for fighting for people with HIV/AIDS.
The Washington Post wrote in August of 2006 that Senator Clinton's refusal to support the latest version of the Ryan White Act was merely a political move to enhance her electoral achievement on a larger level. What the Senator was basically doing was her job. She was ensuring that her constituents received the care and funding they desperately need. Senator Clinton knows what the disease has done to the State of New York and the impact it has had on her people. She was fighting for more of the pie for them. All of the Democratic Congressmen from California refused to support the bill in the House, and no one said anything about them vying for national attention. They, too, were doing their job for the State of California, for it was set to lose much of it's funding.
In 2009, Ryan White Act's funding will only increase 1%, but infections have severely outpaced that. Ryan White's funding is rapidly becoming like a home in Riverside County, California -- totally upside down. Our need has outpaced our funding years ago, yet the Bush Administration thought it perfectly fine to continue with a plan that gave more funds overseas, in spite of the various moral strings attached, and ignore the home front. Americans have adjusted to this concept as well - the country now sees it as a disease that exists in Africa and our fellow country men just get to take these really simple pills that are readily available almost everywhere, practically over the counter in fact, and all is perfectly fine. I can speak first hand of what a crock that is.
If I could have her ear one more time, I would ask her this -- who shall pick up your work when you go off to become Secretary of State? Who shall take care of those of us living with AIDS in the United States? I would also plead with her to leave someone in her place. I would also ask her to fight for equal drug access for all Americans, regardless of which state they live in.
Getting back to my own pills, I get them courtesy of the State of California, funded by the Ryan White Act. As with all legislation that involves spending, the House first gets to decide on how much money gets allotted, and then the Senate gets to vote on it. Each state is given a certain amount, based on need. The states themselves get to decide what drugs the funds cover, what the income requirements are, and who gets access to the funds. Because I have private insurance, my ADAP funds cover just my drug co-payments, which are basically a small car payment. I require three HIV drugs, one drug to help me sleep, another to combat side effects from the drugs, another to fight the pain the side effects causes, and yet another to replace the testosterone that my body no longer produces thanks to the HIV. Having an individual policy (read - more reason for the insurance companies to take advantage of you) comes with higher co-payments, and without ADAP it sometimes meant the difference of going without other necessities.
When I was initially diagnosed with AIDS, I was in pretty rough shape. I lived too long in the happy land of denial and got sicker than I could even possibly imagine. After I stabilized, my first doctor told me, "You realize you were literally three days away from death." Hearing it was rather sobering, but not surprising. Prior to my hospitalization, I could barely sit up in bed I was in so much pain. Luckily I responded to the drugs that would treat my infections almost immediately. Reading everything I could get my hands on, I learned that given with my tcell count and the number of infections I had going on, current data stated I probably had two years to live. There it was staring me in the face - my own mortality - and all I could do was sit there.
Upon leaving the hospital, I was placed on the anti-virals and another journey began. All of these pills do not work for all people. Some individuals walk into this crisis with a resistance to all categories of drugs. Some respond perfectly to their first treatments, without side effects. I, however, blasted through one class of drugs in three months, developing a big resistance to it and a slight one to another class of drugs. After many attempts, side effects that included nearly going blind, barely being able to get out of bed, pain like I never knew it before, and some I will not even begin to share right now, I am finally at the stage where I can say its under control. This January I celebrate what I am calling eight "bonus" years. Many others have succumbed to this virus with less than I had going on. Yet I remain, and am so grateful for the chance and I hope you should never, ever know this feeling.
Without our healthcare watchdog in the Senate, who will take care of those that cannot speak for themselves? Who will watch over those to sick to fight? With the deficit going well into the trillions, how we will be able to afford programs such as Ryan White? I know that no matter what happens somehow I will manage, but what about my brothers and sisters with HIV living on fixed incomes? Who will fight for them?
Right now, at this crucial point in the history of our country, we are faced with numerous problems that needed attention yesterday. However, none of them can begin if we don't have health care. Yes, I know how much we need someone like Senator Clinton on the global stage, and I wish her well in her new endeavor. But who will take care of people living with AIDS like she has?
Senator, I wish you well in your new position, but please do not forget about the need for healthcare in America.
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