Thursday, May 26, 2011

AIDS Drugs Take Backseat to Shrimp & Jell-O

As of today, there were 8,310 people living with HIV/AIDS in the United States on waiting list under the AIDS Drug Assistance Program, according to the National Alliance of State & Territorial AIDS Directors. Additionally, there are thousands more who have been adversely impacted by other "cost containment" measures at the state level restricting eligibility (aka, kicked off ADAP). One of the biggest reasons why the ADAP crisis has unfolded over the last two years has been insufficient federal funding, whereby the federal commitment has dropped from 74% of programmatic expenditures in 2005 to 49% in 2010. Sadly, as the lives of thousands of people living with HIV/AIDS hang in the balance, our federal government has funded numerous "pet projects" - including "such programs as Jell-O wrestling at the South Pole, testing shrimp’s exercise ability on a treadmill and a laundry-folding robot, all funded by the National Science Foundation" (Washington Times, 05/26/11).

According to a new Senate report requested by Sen. Tom Coburn (R-OK), over $3 billion was mismanaged by the NSF. That's billion with a "B". Meanwhile, HIV/AIDS advocates were requesting a paltry $126 million from the federal government last year to help alleviate the growing ADAP waiting lists. While Sen. Coburn has not always earned favor from the HIV/AIDS community, there have been other times when, as one of the Senate's only two licensed medical physicians, he has provided unquestionable leadership (including being an original co-sponsor of S.3401, which would have used unobligated stimulus funding to eliminate the ADAP waiting lists).

It has already been documented how the President's stimulus law funded countless of non-essential programs (Read: Mr. President, please “stimulate” the AIDS Drug Assistance Programs), yet the administration opposed using those same dollars to help the ADAP crisis. The Democratic-controlled Congress did little to nothing from 2009-2010 to help ADAP waiting list patients. And now, despite a small increase for ADAPs in the Fiscal Year 2010 federal appropriations law, Republicans in the House of Representatives are proposing to dismantle many of the safety-net programs designed to help people living with HIV/AIDS.

It begs the question, where is the leadership?

It is absurd to think that in the wealthiest nation on Earth, people living with HIV/AIDS are being forced to go without their life-saving medications, but $3 billion can be wasted on shrimp exercising and Jell-O wrestling, among other things. Make no mistake about it, BOTH political parties are to blame for funding these projects. Until the HIV/AIDS community in general, and specifically ADAP stakeholders rise up and demand accountability and funding for proven programs such as ADAP, we will continue to see more and more people living with HIV/AIDS pushed aside onto waiting lists.

Friday, May 13, 2011

2011 Annual ADAP Leadership Awards

There comes a time when reflection is necessary, especially during the most challenging times. To characterize the last two years as "challenging" for people living with HIV/AIDS - including those patients who rely on accessing treatment under the AIDS Drug Assistance Programs ("ADAPs") - would be an understatement, to say the least. Funding cuts...waiting lists...eligibility changes...and even death have reminded the HIV/AIDS community of the serious challenges they faced during the 1980s and early 1990s. Yet, they persevere and continue to fight and "act up" to protect their lives.

The ADAP Advocacy Association (aaa+) contends that ADAP has long embodied what successful HIV/AIDS programs should look like, not only because ADAP keeps people living with HIV/AIDS healthy, productive members of their communities, but also because ADAP represents a strong public health 'Return on Investment' to the taxpayers.” In light of the escalating ADAP crisis, aaa+ feels that it is important to step back and reflect on the good work being done on ADAP by so many leaders - especially since during times like these it is often easy to focus on the crisis itself.

With that in mind, on May 11th a call for nominations was issued for the aaa+ 2011 Annual ADAP Leadership Awards, which will recognize individual, community, government and corporate leaders who are working to improve access to care and treatment under the AIDS Drug Assistance Programs.

A Call for Nominations has been issued for the following awards:

ADAP Champion of the Year (individual)

ADAP Emerging Leader of the Year (individual)

ADAP Corporate Partner of the Year

ADAP Community Organization of the Year

ADAP Lawmaker of the Year

ADAP Social Media Campaign of the Year

ADAP Grassroots Campaign of the Year

ADAP Media Story of the Year

The awards will be presented during the 1st Annual ADAP Leadership Awards Dinner, being hosted by aaa+ on Wednesday, July 6th at 7:00 pm in Washington, DC. The dinner will be held in conjunction with its 4th Annual Conference, being held at the Westin Washington DC City Center on July 5-7th. Jeffrey Lewis, President & CEO of the Heinz Family Philanthropies will be the keynote speaker.

Clearly these awards won't eliminate the ADAP waiting lists, or restore much-needed fundings. But, what they will demonstrate is that the advocacy and activism does make a meaningful difference in the lives of people living with HIV/AIDS, further reminding all of us why we're in this fight TOGETHER!

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