June 15, 2010
There are lots of activists doing great work to resolve the AIDS Drug Assistance Program (ADAP) Crisis. My ramblings are in no way an indictment of their work, but rather my need to scream my frustration, anger and sadness that we have not figured out a solution.
First let me tell you a story ...
1996 was the best and worst year. At the International AIDS Conference in Vancouver, we heard the first results from the clinical trails using combination therapy. Dr. David Ho and proteases inhibitors were all the buzz. Later we would come to find just how effective they would be in prolonging the lives of people with AIDS. It was the relief we'd been waiting for; however, in 1996 we weren't so sure. There was lots a caution about the new regimen, we had been down this path before only to find out it did improve the length or quality of life (remember mono-therapy with AZT).
As more people came back from death's door, we realized they might be onto something. It is impossible to describe the change. Watching friends go from 95 pound skeletons back to their normal weight and out of the hospital.
Up until this time, most people diagnosed with AIDS had six months to one year to live. We still had funerals, but they weren't as frequent. We still visited the hospital, but now our friends came home.
As people living with the virus turned the corner, I was overjoyed yet profoundly sad. Joy for the friends who could start their lives again, and sad for those to died too soon. So many had died. I am still haunted by "if only ...."
If only my friend Paul had lived 3 more years. We could have gotten him on the drugs and he might still be here. Now, he would never see his sons graduate or walk his daughter down the aisle. I went to all these occasions as a pale substitute and a grieving queen. If only ...
This story is repeated for thousands of us who lost someone too soon. If only we knew they had to stay alive until 1996, maybe we would of worked a different strategy. If only ...
Fast forward 14 years, we now have effective treatments, but we also have waiting lists for these drugs. According to the National Alliance of State and Territorial AIDS Directors (NASTAD) we have 1,431 people on waiting lists (as of June 10, 2010). That does not include states that don't keep lists and/or states that cut their drug formulary.
Hopefully, we only need to hang on until 2014 when healthcare reform is supposed to be fully implemented. It would really piss me off if you died now, just three and half years before we are supposed to get access to the meds. Well I say no more IF ONLYS.
The medications work. I cannot for a second time look back and say "if only" we had survived until 2014. It was enough to do it in 1996 when we didn't know, now that we know it works, it seems insane that we cannot find a solution to the waiting lists. I mean a solution for the full 3.5 years. This annual ritual of asking for more money does not make any sense. Every year we beg for money to cover medication that will probably be covered in 2014 due to health care reform.
I know this frustration is shared by so many of you.
According to my friend Robert Greenwald, "The National AIDS Strategy, and any other action on the part of our elected officials, will be a sham if it doesn't satisfactorily address the immediate and ongoing health care and treatment needs of low-income, uninsured people living with HIV and AIDS."
I refuse to feel helpless in the middle of this potential crisis. So this is what I can do now, hopefully together we can do more in the future:
I have access to this thing called the 2010 United States Conference on AIDS (USCA). Even though it's only 4 months away, we need to change and adapt the meeting:
I don't know what is going to work, but I know that I cannot sit on the sidelines and watch and wait as more people go on the list. If you feel this frustration, I hope you will join me. If you want to help plan the ADAP track at USCA, please email me at email@example.com. Do something, do anything. No one should have to die for a battle that shouldn't exist.
Yours in the struggle,