How did this all start? Indulge me to perform a brief history lesson. ADAP (AIDS Drug Assistance Program) are a set of programs under the Ryan White CARE Act (enacted in August, 1990.) The program requirements stand independently and are outlined in all 50 states, including D.C. and U.S. Territories. It provides appropriate medical care, medicine and HIV/ AIDS medications, to uninsured and underinsured HIV positive individuals who require assistance to pay for their treatments. The RW CARE Act is funded on the State and Federal level and rebates from participating pharmaceutical companies with an incentive Return on Investment (ROI.) A final note to make here is the two dubious political allies, Ted Kennedy (D-Massachusetts) and Orrin Hatch (R-Utah), came together and authored the RW CARE ACT. Since its endorsement over two decades ago, it prolonged the lives of millions living with the virus and the bill has been reauthorized four times, most recently by President Barack Obama in October, 2009, extending the program for four more years.
In addition to numerously obvious reasons, it’s imperative to understand why ADAP, the “payer of last resort,” is so vital in a society filled to the brim with unemployed workers. Let’s assume for a moment that the majority of the members of our executive and legislative branches of government, by no fault of their own, haven’t a clear understanding of what it takes to treat HIV positive individuals. To give a lemans term evaluation let’s use children in a scenario (we were all one once.) Picture a child playing in his/her backyard on a hot summer day. The child falls to the ground and their arm begins to bleed. The mother witnesses this and comes to the rescue by cleaning the wound with disinfectant and finishing with a Band-Aid over the wound. The mother’s actions significantly decreased the possibility of an infection promoting a fully healed arm. By comparison, a healthy HIV positive person is laid off from work and loses their insurance. A fully funded ADAP program in their respective state will come to the rescue and grant the patient access to the daily medications they need to stay healthy, lead a normal, productive life and hopefully get back into the workforce. Because of the state and federal government’s recognition and granting of increasingly needed funds favored the provision of ADAP services for this person, thus significantly decreasing the probability of becoming an AIDS patient or infecting others with the virus.
Now let’s take the same scenario and alter the situation a bit. The child falls to the ground and their arm begins to bleed. The child is afraid to tell their mother because they know that she will put painful disinfectant on the wound. In an effort to avoid the sting the child sneaks into the bathroom and places a Band-Aid over the wound. Several days later, the wound spreads up his/her arm and gets infected to the point that hospitalization is required. By comparison, a healthy HIV positive person is laid off from work and loses their insurance. The ADAP program in their state is drastically underfunded due to budget cuts from state and federal legislators and unable to keep up with demand. The person is put on a “waiting list.” What the government is unaware of is the HIV positive person had only one day worth of pills left. Weeks of pleading and appeal to be accepted into the program had gone by. All the while the lack of medication needed to sustain the virus in the patient’s body allowed replication of the HIV cells in large quantities. The now very ill, unemployed man is rushed to the hospital to be treated as patient with AIDS-related complications. The ADAP Crisis. It is a crisis quite familiar and reprehensible to those most affected. Where do we place blame? Who cares? There’s no time to debate when people’s lives are at stake. I call on the GOP-controlled House of Representatives as well as the Democratic Executive branch (most notably President Obama, himself) to set aside the partisan bickering and solve this crisis…yesterday!
Let’s take a look at some facts that helps illustrate the direct result of partisan bickering leading to a crisis far deadlier than it should ever have been permitted; and if they don’t act now it’s confidently expected to worsen with each passing day. Taken from the White House website, in 2009 when the President signed for the extension of the RW CARE Act he quoted the following about the war on AIDS.
“This is a battle that’s far from over, and it’s a battle that all of us need to do our part to join…So tackling this epidemic will take far more aggressive approaches than we’ve seen in the past—not only from our federal government, but also state and local governments… If we want to be the global leader in combating HIV/AIDS, we need to act like it…What we can do is to take more action and educate more people. What we can do is keep fighting each and every day until we eliminate this disease from the face of the Earth.”
Where do I begin with this? If this message falls onto the President’s desk in the oval office I hope to offer him a bit of education on the subject. Yes, we agree this battle is far from over, but why hasn’t he done his part as the leader of the free world? Perhaps in his mind and in an effort to decrease the national deficit aggressive approaches means his five-year freeze order on discretionary spending programs, which thankfully didn’t include RW. If this were the reality show, “Survivor,” I’d say our community dodged a bullet and were safe from elimination for another week. But, for how long? As said, the country needs to start acting like the global leader in this fight. Recently the President responded to the crisis by appropriating a few million dollars in emergency funds to the program. That is an example of a Band-Aid without disinfectant, prolonging the inevitable spread of the once isolated boo-boo on a child’s arm. It’s been brought to the President’s attention at nauseating: Take action, get the remaining $126 million needed (and I’m sure that is a conservative figure) for the program just to keep it solvent for another fiscal year. It’s a chance for him to show leadership, that our government cares about its constituents. I ask our Democratic President, who tells us to keep fighting each and every day did he mean HIV and AIDS patients must fight the fight on our own to stay alive each and every day?
[Photo: Vice-President Biden (l) next to Speaker Boehner, shaking President Obama's hand in U.S. House of Representatives during 2011 State of the Union address]
The Republicans are not exactly stepping up to the plate, either. They, too, have a chance to shine; in particular the House Speaker, Senator John Boehner. In an effort to reject the President’s health care reform bill the House slashed funds from preventative, health and social services. Thankfully, for the second time, our community was safe from elimination. Does this make us finalists on Survivor? But, for how long? Abstaining from detail about the negatives of said cuts (as that is an issue for another day) I want the House to understand why it is important that they not only refrain from cutting into RW next, but the consequences of doing so:
HIV is an extremely intelligent virus. It waits for the human body to do something fatal such as turning our backs and forgetting to take the pills-even for a day. When that happens the virus is free to replicate within the human, obstacle free. And if and when the day comes that the government finally grants the necessary funds for ADAP the damage may have already been done; during the period when the patient was on a waiting list the HIV virus grew a resistance to the medication. In other words, the HIV virus is even smarter than before and harder to treat! That is exactly what Congress and the President is doing so long as they fail to react to this crisis. As we speak the once healthy 7,553 Americans that have been cut off of their life-saving medications and placed on waiting lists are growing resistances. Because the Democrats and Republicans have failed to work together to take action these immune-compromised people have no way to halt the spread of the virus within themselves and to others and risk infecting thousands of HIV negative individuals. Unfortunately, the scary truth doesn’t end there.
In 2005, the Federal government covered 72% of the programs’ cost. As time progressed and even though demand increased the Feds decreased their contribution as low as 49%. State contributions couldn’t keep up and the certain waiting lists were born. Less than a year ago, in July 2010, there was 2,359 Americans on a waiting list. December 2010, they had grown to 4,543. By February of this year, there were over 6,000. With the 7,553 latest figures already mentioned one can deduce the terrifying direction our country is heading at an overwhelmingly increasing rate. And these numbers don’t include the “invisible waiting lists,” consisting of people who don’t bother applying for ADAP assistance due to their state’s current waiting lists. There are accounts of patients cutting their pills in half just to spare a few more days. Regrettably, the lighter dosage proves too weak for fighting and the virus will continue to enhance.
We can all agree that no one should rely solely on the government to help. However, in an era of a recession sometimes it’s the only option. The government needs to realize when an individual is HIV positive it is inevitable that medication and treatment is in their not so distant future. The demand will continue to increase unless the government plays their role to stop the spread of the disease: that role is to fund the ADAP program, get the individuals already infected the medical care they require. That will decrease the risk of new infections. If the government fails to apply, the financial burden placed on America in the foreseeable future will result in figures I dare not imagine.
I don’t care who does it, Democrats or Republicans, but someone has to end this crisis now! In 1990, a miracle happened when a Democrat and a Republican nourished a bill that prolonged the lives of millions. It happened before and I hope it happens again. Don’t allow useless bickering get in the way of pride when precious minutes are going to waste. Please, save my life and the much-needed ADAP program.
Blog by Christopher Myron, ADAP Advocacy Association member from New York City
