Michael Emanuel Rajner

Nick Rhoades: ADAP Stories from the Hill

Filed By Michael Emanuel Rajner | July 10, 2010 10:00 AM | comments

Filed in: Living
Tags: ADAP, HIV/AIDS, Iowa, medication, Nick Rhoades

For many us, when we think of HIV/AIDS it's often assumed that the survivors of this virus live in urban parts with an infrastructure to support individuals seeking care, treatment and support. Nick Rhoades, a 36-year old gay man who spoke at the Senate briefing on the AIDS Drug Assistance Program Crisis, shared the humbling moment of moving back home to live with mom when he lost access to his lifesaving medications. He spoke to the depression that sets in while being challenged with the physical, mental and emotional burden of HIV/AIDS when you don't have access to your life-sustaining medications - the constant conversation in the back of the head asking how much sicker do I need to get before I die.

Nick currently has access to his medication for only another two months. Just before he left for Washington, DC, his mother embraced him and told him to tell Congressional staffers that she cannot go back to a day of seeing her son decay and erode. His mother is counting down the days until her baby loses access to his treatment under a special pharmaceutical sponsored compassionate access program.

At the briefing, Nick shared that ADAP was the key that opened the door to his wellness and his panic as these next two months tick away.

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Michael and Nick, Keep working the Halls of Congress and the State Legislatures. Indiana does not currently have a waiting list, but we have in the past and it could happen again. The National Strategy being announced on Tuesday will hopeful address how to cure some of the problems created by flat funding and by various states who have not contributed their fair share. Thank you both for all you do.

Kathy VanArkel | July 10, 2010 2:36 PM

Nick-I am so proud of you and the effort you've put forth to see a positive outcome to this huge problem. I am not only proud of what you've done to improve your wellness but also for the wellness of the thousands of others who are waiting, praying and hoping. Mom

peter abbott | July 11, 2010 1:54 AM

hi Michael, I've been reading your posts everyday with interest because 1) I care, consider FL still a home and 2) your frustration with the inactive community resonates with me and my life.
But how I dealt with it, is not part of your story, I left FL and started a much better life in the West, my dreams where blown wide open and fulfilled. Thus my question: This country gives us a choice. There are many states with NO ADAP waitlists. What good am I to the cause, if I get sick and frustrated with an inadaquate system ?
I was an activist in FL, but now I am a much better activist with a system that works. Yes, I am suggesting people move for better services. I know there are certain individuals, who would like to see us dead. And anytime you need a room in CA, give me a howler.

Thanks Peter. You raise a good point about moving, especially when you think of the services available in urban areas versus more rural parts, especially in the south.

California, like New York, are very fortunate to have a long history of AIDS activism in those states. The community actively lobbies their local, state and federal lawmakers. Here in Florida, there are about a dozen known activists/advocates who struggle to engage an apathetic community. But, I need to share that since I join the board of the Florida GLBT Democratic Caucus a few years ago, I've made certain that more state and federal lawmakers become versed in the issue of AIDS and to make certain its on their radar.

From 1992-1994, I lived in Southern California and one day hope to move back to the west coast, either back to the Los Angeles area or San Francisco. But for now, I'm here in Florida and go to raise all hell.