Playing the HIV Waiting Game

People 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.” As of June 1st, Florida had 1 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 to 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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celina5000's picture

I'm a Canadian citizen, and I watch with great amazement how our American neighbors are against universal health care. When I receive my meds, I notice the price on the receipts; they're in the hundreds of dollars that I could never afford. But with our system medications are provided for FREE, if you have a long-term disease, if you are receiving Palliative care, or maybe you are part of a study. Nobody in this country goes without mdication. Hospital stays are free. I feel so badly when I hear that, as you say,that a person from one of the richest countries will be placed on a list to receive life-saving medication. This is no better than living in a third-world country. It's a tragedy when there is so much to worry about with HIV and I can't imagine how people fare with the American system. Who has the energy to lobby for yet more change to live a healthy life, which is your "right", in today's society. You certainly have my empathy but that doesn't put bread on the table or medication in your body to keep this virus at bay. Thinking of you. Peace

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