Michael Emanuel Rajner

My ADAP Story from the Hill

Filed By Michael Emanuel Rajner | July 09, 2010 8:30 AM | comments

Filed in: Action Alerts, Living
Tags: ADAP, Congress, HIV/AIDS, HIV/AIDS medication, President Obama

I've spent the past few days in Washington, DC meeting some wonderful people fighting for their lives and the lives of those they love. Together, we engaged in rich dialogue and each of us took turns to vent our anger and frustration with our community - no matter whether it is LGBT, straight, black, white, latino or other - in letting us down and failing to mobilize around this crisis and advocate for those who are too frail.

Journeys to Washington, DC and other cities for conferences often takes a hefty toll on my body that is actively beating down the HIV virus and this trip was no different. Each night I woke around 4am to night sweats and nightmares. Each day there were many moments when a bathroom could simply not be close enough.

Since joining the Bilerico family, I'm often intimidated since I'm not the greatest of writers. As I continue this fight for myself and others to secure their HIV/AIDS medications, I'm finding I need to push myself in many ways so I made a video message on my last day in Washington, DC to ask you to join the fight.

Continue reading to learn how you can get more involved.

One of the actions we agreed was to film and circulate short videos of people sharing their concerns and fears with the fast growing ADAP crisis. I would like to invite the Bilerico community to participate and join in this effort.

Many of us have webcams and digital cameras. Well, now is the time to begin to learn how to use them, because its life and death for thousands living with HIV/AIDS.

Please send me a short digital video of you, a friend or family member sharing:

  • What's your name?
  • Where you. (city and state)
  • Are you a person living with HIV/AIDS or do you care for someone who has HIV/AIDS?
  • What is the AIDS Drug Assistance Program important to you or someone you care about?
  • What are your fears if you or a loved one should lose access to their HIV/AIDS medications?
  • What should President Obama and the US Congress do to solve the crisis?

Send the digital video clip to me here at Bilerico.

The real fears of many with access to life sustaining medications are growing fast that they will soon lose access, get sick and die. For those on a wait list and without access to HIV/AIDS medications, this fear may soon be their reality.

To stay informed on the ADAP Crisis, you can join our Facebook page or Google group.

Please help us!

I was able to be in Washington, DC for 6 days and 5 nights because of the support from The AIDS Institute, AAA+, Bristol-Myers Squibb, Randy Allgaier and David Brakebill. Each stepped up and was generous enough to donate the flight, waive registration, take me to dinner or just let me crash in their hotel room and hope I don't snore. It was proof that when times are tough, a community can rally as a unite force.


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Regarding the ADAP crisis (which as of this week has 2,291 individuals on wait lists), while we should and will continue to take this administration to task for their "too little, too late" response to HIV/AIDS, my biggest advocacy is to get the pharmaceutical companies to lower the prices of HIV medications to mitigate or eliminate the wait lists. Those of us who have pursued the drug companies for their price gouging and gaining some consessions, allowing state legislatures to re-think their funding cuts to ADAP, know that Bristol-Myers Squibb is the last hold out and refuses to budge in their pricing of Reyataz which about $13,000 per patient per year. It's more than a little ironic therefore that Michael indicates that Bristol-Myer Squibb "helped" with his effort to "advocate" on Capitol Hill.

In California, while over the last 5 years the number of people eligible for ADAP has increased by 49%, the COST of HIV drugs placed on the formulary has risen 168%.

The same company that "helped" with Michael's advocacy has put many more millions of dollars into lobbying efforts that have given the phamaceutical industry control of the healthcare debate in this country and states ADAPs are just one example of this.

With costs averaging between $10,000 to $13,000 per patient per year for just ONE HIV drug, these companies offer the same drugs "at cost" (per their own admission)to lower income countries for $100 a year. Profits over peoples lives is their bottom line strategy. Price gouging is the major driver behind the continual increase in ADAP funding sustainability at a time when states are having to deal with very real deficets,cost cutting and more individulas qualifying for ADAP due to lay-offs and the economic downturn.

It's time for the ALL the drug companies to step up to the plate and do their fair share. They will still reap billions in profit and with price discounting for ADAP they will still take the lions share of the fixed pot of money for ADAP, it's just that states can buy more drugs, eliminate the wait lists and oh yeah, save a life or two in the process.

Joey, you raise very valid and important points in your remarks. I'm in complete support of pressuring big Pharma to reduce their prices and all drugs, not just limiting it to HIV/AIDS. As a Medicare recipient, I was outraged when Congress gave pharama the upper hand and protected them from having any price negotiation of drugs.

There is both good and bad in the world of pharma. On the good side, when they have almost endless funds to employ and lobby, I can share that over the years I have met several who work for the industry and truly do their job to provide community education. Something so lacking in the provider world.

The role that BMS provided was to help several of us advocates with any printing. There were several occassions, on one occassion, we printed off 300 copies. On last minute notice, we needed to use the hotel services at $.15/page. On my limited income, even $45 for printing just on one occassion is expensive. So for that I am grateful.

I do not disagree that pharma needs to continue to lower their prices and BMS should not be holding out on dropping their prices to ensure for afforable access.

Michael,

You are doing a great job. Thanks for your commitment to the issue. It's a travesty that 2010 America people are going without lifesaving medications. It's a travesty that while this is going on we are allocating $250million to resod the Mall in D.C. (Stimulus Bill), Sending $250 million annually to Uganda under PepFar, etc, etc...
We have come so far since the arrival of HAART, and it's a slap in the face to these early pioneers to have waiting lists in this day and age.
I will be taking your suggestions to heart and will be writing, calling my Senators and President Obama regarding the crisis.
Might I also suggest your readers contact media outlets to raise the issue into the public arena.

Regards,
Will