Michael Emanuel Rajner

Playing the HIV Waiting Game

Filed By Michael Emanuel Rajner | June 30, 2010 9:30 AM | comments

Filed in: Living
Tags: ADAP, HIV/AIDS

Monday, shortly after posting my action alert Demand President Obama & Congress Address ADAP Crisis , I received an email from a wonderful advocate in Tampa, Florida, who is also a woman living with HIV/AIDS.

As I read her e-mail that was distributed to several list-serves for AIDS advocates, it was a chilling reminder of the frustration with the history of our nation's response, or lack thereof, to HIV/AIDS.

With her permission, I wanted to share it with the Bilerico Project community.

Playing the HIV Waiting Game

Vickie Lynn MSW, MPH

Vickie Lynn.jpgPeople who are HIV positive have had a long history of playing the HIV"'waiting game."

When HIV was first discovered, we all waited for treatment. We waited for medications, anything that would help stop the virus from killing us.

We waited for doctors who were willing to see us; in the beginning very few were.

Some of us waited for death; wanting it to come quickly and rid us of our pain.

We waited for our government to respond to the crisis; we waited a long time.

We waited for compassion, for tolerance, for love; some of which we are still waiting for.

We waited for forgiveness from ourselves, from others.

We waited to be accepted as humans from our families, our friends.

We waited for new medications with fewer side effects.

We waited for access to care that we could afford; many are still waiting.

We are still waiting for a cure.

Today, in the United States, there is a "waiting list." This waiting list has many people's names on it. As of June 24, 2010, there are over 1,781 names on this waiting list. Names of people who need HIV medications and cannot afford it. These names are people, real people, all over the United States that do not have access to life-saving medications.

"You tested positive, we have medications that can save your life, but there isn't enough money to help you. You will be put on the waiting list.

On June first, Florida had one person on this waiting list. Today, June 28, 2010, there are over 361 people waiting!

They wait, waiting for a position to become available, waiting for a slot. Waiting for someone to tell them, "It is your turn, now you can have medications, now your health will improve, now you may survive."

So how do you go from being on the "waiting list" to actually getting your medications?Well, it seems, someone has to come off the program for you to take their position. They either must die, forget to file the necessary paperwork in time (and in that case they go to the waiting list), or they could win the lottery and be able to pay for the own medication.

Where do you fall? Are you on the waiting list? Do you have access to medications?

The United States AIDS Drug Assistance Program (ADAP) is in crisis. The waiting list in states is growing. States are putting heavier restrictions of eligibility requirements; they are reducing formularies and restricting the types of medications you can get. Less and less people will have access to medications unless something is done. More people will die.

Why is one of the richest countries in the world in such crisis? Does anyone care? We are waiting.


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Michael,

Keep up the good work. A strong voice like yours is so very much appreciated.

peter abbott | July 1, 2010 5:05 AM

In my humble opion, expanding Medicaid or other Cost-Containment Strategies that 12 states have implemented and 7 more are planning are the far better way, because the formulary list
(ADAP med list) can be short in some states (Idaho 28 different meds) and long and generous in another (New York 466 meds) or open formularies (Ma, Nh and Nj).
I thank you for this report from Tampa, however it is the Florida reality.
Today's Bilerico.com blog featured at least 2 posts featuring the Florida reality. I do not believe in jumping to the statement: this is nationwide. And we need more reports showing how well our community is living in some of these United States.

You are both fighting the good fight.