Friday, May 6, 2011

Losing Access to ADAP: What It Means to be HIV-Positive

Checklists. Every individual and organization has one in some sort of fashion, including the U.S. government. Whether they are logged into memory or jotted on paper it lists tasks to be completed usually in a specific priority. At some point or another everyone has endured that feeling of accomplishment when one of these “To Do’s” has been fulfilled and crossed off the list. This week in America the government proved to its people that they could cross off a task in their own agenda by killing Osama bin Laden. The next task that the government should surge their efforts towards in the interest of its citizens here at home: addressing the ongoing AIDS Drug Assistance Program (“ADAP”) crisis and how the number of patients losing access to this much needed program is not only rising, but getting fiscally worse. It must be illustrated to those [with the power to solve this problem] on what it means to be HIV positive today and the consequences of ignoring this issue will result in a financial burden on all Americans.

Doctors, therapists and social workers endlessly explain to the HIV patient that exercise, a well-balanced diet, and a stress-free environment are not only beneficial, but also vital for keeping the virus from developing internally and taking over. Of course, none of these variables are possible unless the patient adheres to the life-saving medications that allow them to be productive in their lives and keeps them from a hospital bed. And up until the recent years even with new infections the fatality rate from AIDS-related complications has significantly decreased. Applause for this breakthrough goes not only towards the medications that have been discovered to keep HIV-positive individuals healthy, but most importantly to the Federal and State government-funded program, ADAP through Part B of the Ryan White Care Act. Without this program, some speculate that HIV/AIDS would triumph as the leading cause of death in the country. For thousands upon thousands of HIV-positive individuals nationwide this “payer of last resort” is the only access they have to receiving the medications and medical care needed for ongoing sustainment as well as preventing the spread of the virus to non-infected people.

With that said, there is a shared anxiety in the HIV/AIDS community at the fact that this program is in jeopardy beyond extreme measures. Although the community is grateful that the President has ordered an additional emergency $25M in funds to Ryan White in FY2010 and its been further ordered for the continuation of some funds in the FY2011 budget (when so many programs have been cut in other committees) it must be pleaded that it isn’t enough to keep ADAPs afloat for another year. The continuation of insufficient funding for this program will not only definitively throw more HIV-positive individuals on waiting lists in the most obvious manner (7,674 in 11 states as of 4/22/11) but more individuals will be rejected altogether. Sadly, it doesn’t stop there: Eleven states with waiting lists will soon turn to 20, or 30, and soon all states and U.S. Territories will fall into this trap. Will this problem be addressed then?

With an unstable economy still at large many Americans, especially HIV-positive individuals, find themselves working two jobs in an attempt to pay the bills and get ahead. One job has no insurance and the other job has an insurance plan that doesn’t cover the HIV medical necessities. An individual that fits this example will most likely not qualify for ADAP even if they make only $500 over the eligibility limits in their state. Consequently, two-thirds of their salaries go towards monthly prescriptions and medical costs. The remaining few extra dollars at the end of the week doesn’t always cover the rent, food and bills. Sooner or later a definite choice will have to be made as to what’s more of a priority to pay for- the roof over their head or for groceries or for another month’s supply of medications and overdue blood work. In other words, ending up on the streets, starving or allowing the virus to strengthen, spread within and onto others and ultimately take over both physically and financially for all? Let’s not forget the rising stress levels from working two jobs under the influence of a compromised immune system. In this lose-lose scenario the individual’s health deteriorates because of no exercise, poor diet and high stress. The only hope for this individual is to be accepted to the ADAP program - with a price to pay by giving up one job and slashing their income by more than half. At least in this case this person’s HIV medicine, blood work, and doctor visits (all covered by Ryan White programs) will be covered. But, what happens when they are thrown off the program because the State had run out of funds? Out comes the virus from its hideout ready to take on more victims and dollars from the taxpayers.

Finally, if all the recent talk about lowering the Federal Poverty Level (“FPL”) for the ADAP program in some states gets approved then the result sets HIV-positive individuals in danger of still making too much money- even on one salary. There is no question these people, who so desperately need the help, will get kicked off the ADAP program for sure. To utter it once more- poor diet, lack of exercise, increase in stress level, and hardly clinging on to what pills are left in the pill box- will the virus take over? The answer is YES, without question or argument. Thousands of Americans are victims to this and thousands more are already in danger of falling into this category under the same foreshadowing issue. Scarily, these “thousands” will turn to millions in the coming years if this topic is not addressed. Is that what it will take for the government to understand that HIV/ AIDS and the ADAP Program under Ryan White are once again situations that cannot continue to be overlooked?

This is a true story of what it’s like to be HIV-positive in this day in age. One can only pray that all the wonderful testimonies about how healthy individuals have become thanks to the progress in medications and treatment will not become a story of the past. When diagnosed with HIV its assured by so many that a full life expectancy is imminent. That may no longer be the case.

Access to ADAP is the treatment livelihood for countless Americans living with HIV/AIDS, and it needs to be a top public health priority in the government. “Fighting to survive” should never be on any HIV-positive person’s checklist in this day in age.

Blog by Christopher Myron, ADAP Advocacy Association member from New York City


Anonymous said...

Were it not for ADAP in texas the cash cost of a one-month supply of my medications is over $3800. How is someone supposed to pay that and still meet the obligations to keep a roof over thier heads. MY GOD, just one medication of the several has a cash price of nearly $1400.

Anonymous said...

The article was well written and certainly hit home for most individuals living with HIV/AIDS. As an advocate and a person living with HIV I echo all the points. My statement at a Public Hearing in Florida ( the nation's largest ADAP waiting list). If I work I die.. If I don't work I die. What choice do I have?!!!!

Anonymous said...

That's the point. Without ADAP most of us would be big trouble. Unfortunately, if we don't fight to fix this then that may be the case.

Anonymous said...

Quick question then, what about Wellvisita? I know that it is an out of state mail order pharmacy with free medication donated( by the drug companies) to anyone on an ADAP wait list. In my state when we discuss a possible wait list there is the assumption that HIV+ people can continue to get medications, not as easily for certain, but people won't have to do without. Is this true ? If I am missing a major difficulty or this isn't true, I would appreciate knowing so I can challenge our ADAP task force.

ADAP Advocacy Association said...

Welvista is an option, but keep in mind that patients have to be on an ADAP waiting list to qualify for their treatment. If patients are deemed ineligible by the state via eligibility restrictions, then they are NOT going to be able to secure their medications through Welvista. Also, Welvista is not licensed in every state.