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Ramblings From NMAC Executive Director Paul Kawata About the Developing ADAP Crisis

By Paul Kawata

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.

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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:

  • Not repeat the good work being done by other activists.
  • Identify and understand the medical ethics of not covering FDA approved drugs in 2010 that will probably be covered in 2014 when healthcare reform is fully implemented.
  • Work with communication specialists to better understand ADAP messaging. What should be the ADAP message from community based executive directors, people with AIDS and other activists. What is it going to take to get Congress and the Administration to change it's mind?
  • Convince executive directors of community based organizations that along with being a good manager, they must also be a grassroots activist and a political organizer. To also provide the necessary training to make this a reality.
  • Work with organizations who provide case management to insure that ADAP clients who are eligible get moved onto Medicaid. To provide training if necessary, but more likely to share strategies when clients keep getting turned down for Medicaid, but you know they are eligible.
  • To bring new voices to the table, particularly those from communities of color. To connect us with the pharmaceutical companies, ADAP activists, ADAP Directors and the Administration to figure out how we can best support their work.

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:

  • Offer space to activists doing work on ADAP to share their experience with conference attendees.
  • Create a track at USCA just about ADAP (along with an existing ADAP Plenary).
  • Expand the pre-conference Executive Director's meeting to include training on grassroots activism and political organizing.
  • Connect the USCA community (people living with HIV/AIDS and community-based organizations) with pharmaceutical companies, ADAP directors, federal agencies and the good work being done by the ADAP advocacy community.

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 pkawata@nmac.org. Do something, do anything. No one should have to die for a battle that shouldn't exist.

Yours in the struggle,

Paul Kawata

See Also
2012 National ADAP Monitoring Project Annual Report: Module One (PDF)
After Five Years, ADAP Waiting Lists Have Been Eliminated; Unmet Need and Funding Uncertainties Require Continued Commitment
More News on ADAP Funding and Activism

Reader Comments:

Comment by: Mike C (Jackson. MS) Wed., Jun. 16, 2010 at 8:57 am EDT
1st: Do not for one minute think that the panacea of care will rely on the health care reform in '14. How many people in low incomes who are currently on ADAP programs will not be able to afford the mandatory health care and it's premiums.

2nd: Deductible and Copays. Even on Medicare, as I am now, I roll off ADAP for Jan & 1/2 of Feb each year, then immediately hit the 'gap' and fortunately roll back to ADAP for the remainder of the year. Jan and Fed copays for rxs are $175/month.

3rd: Copays for access to medical care, i.e. the doctors who write the rxs for us to take. $35 copay visit and $150 copay for labs, every 3 months mind you. Honestly, for someone with healthy counts and a good track record for a year, should only need the doctor and testing every 6-9 months, just my opinion.

4th: The waste of overcharging to ADAP and Ryan White. Following the actual billed charges through the process of Medicare, Humana, then appx 20% paid (give or take a little there) combined are much less than what the Federal programs are charged.

The overhaul of ADAP to keep room for all patients to participate needs to start from the bottom up, but more importantly from the top down.

Our lives depend on it.
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