Tuesday, March 29, 2011

ADAP CRISIS & LAWMAKERS: Stop Bickering, Start Saving

In a nation victimized by economic turmoil, stagnant unemployment rates, union disputes and soaring gas prices with no end in sight makes it easy to understand the anger and frustration behind Americans of all backgrounds. The stronger, louder individuals will rally and protest in effigy. The silent write letters to elected officials expressing their concerns. Both may benefit in their own right. But, how does one comfort an American that is not only angry and frustrated, but scared as well? Scared that their life will be cut short thanks to a crisis that is disturbingly growing stronger…yet, could have been avoided and can be resolved instantly?

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

Wednesday, March 23, 2011

Mr. President, please “stimulate” the AIDS Drug Assistance Programs

Today, there are 7,372 people living with HIV/AIDS (“PLWHAs”) in the United States being denied access to life-saving medications under the AIDS Drug Assistance Program (“ADAP”). ADAP – which is a federal-state, payer-of-last-resort program – is authorized under the Ryan White Comprehensive AIDS Resources Emergency (“CARE”) act. The law in general has enjoyed strong bipartisan support since it was first passed in the 1990s, and ADAPs specifically have been a Return on Investment (“ROI”) model since the federal government began pumping money into them when President Clinton and Speaker Gingrich were in office.

It is hard to imagine that in the most powerful, richest nation in the world there are people on ADAP waiting lists. But it gets worse!

There are thousands more PLWHAs being denied care because States are enacting “cost containment” strategies – including changing eligibility requirements. In other words, one day PLWHAs are eligible to receive assistance, then the next day they aren’t eligible. These are known as the “invisible” ADAP waiting lists. This has already played out in Arkansas, Florida, Ohio, Utah, and Virginia.

How is that for fair? How is that for protecting the safety net? How is that American?

Maybe fighting HIV/AIDS is no longer “sexy” here stateside. It sells well in the media to fight cancer, obesity or Autism because HIV/AIDS is a problem “somewhere” overseas, right? Unfortunately, facts tell a different story because HIV infection rates are climbing rapidly – and not just in the gay community. They are increasing in rural communities, as well as certain metropolitan areas (e.g., DC has HIV-infection rates equivalent to Third World countries); it is a problem disproportionately impacting women, and racial and ethnic minorities; and it is showing alarming signs of exploding in younger generations of Americans.

That aside, ADAP waiting lists are putting thousands of lives at risk because they deny access to care and treatment (thus making PLWHAs more prone to opportunistic infections). Furthermore, ADAP waiting lists are potentially putting even more people at risk for getting infected with HIV, because PLWHAs not receiving anti-retroviral therapy are more infectious.

How is that fair? How is that for protecting public health? How is that American?

The ongoing ADAP crisis is being fueled, by in large, because federal spending has been inadequate – despite small budget increases under both President Bush and President Obama since 2005. The federal share of ADAP spending decreased in FY2009 to 45% from 49% 2005, while state share increased from 14% to 19%. Insufficient federal funding is evidenced by only 3% increase over previous fiscal year, compared to 61% increase in state level funding.

Here is the real “kicker,” too. The ongoing ADAP crisis could be solved with as little as $126 million for the current fiscal year. That’s “M” as in “million” and not “B” as in “billion.” That’s about as much as the U.S. Department of Defense spends on paperclips in a month.

But recognizing the fiscal climate in Washington, DC and the need to address the federal government’s addiction to spending money it doesn’t have – as well as the necessity to address this nation’s ballooning federal debt – it makes sense to be cautious about spending more money. That said, ADAPs have routinely proven their cost-effectiveness and demonstrated excellent ROI – especially for a public health program. But that’s another conversation.

However, there is an immediate short-term solution that warrants consideration!

[Photo: Sen. Richard Burr (left), Sen. Tom Coburn (center) and Sen. Jon Cornyn (right)]

For the better part of one year, many in the HIV/AIDS community have supported legislation introduced by Sen. Richard Burr (R-NC) that would use unobligated stimulus funding. The "Addressing Cost Containment Measures to Ensure the Sustainability and Success of the ADAP Act" (S.3401) – or ACCESS ADAP Act – would transfer $126 million from discretionary amounts appropriated under the American Recovery and Reinvestment Act (“ARRA”), Public Law 111-5, that remain unobligated, to be used by the Secretary of Health & Human Services in fiscal year 2010 to provide assistance in reducing waiting lists under the AIDS Drug Assistance Programs.

Unfortunately, President Obama and many in Congress have been shy toward S.3401. Opponents to the legislation claimed that the stimulus money isn’t supposed to be spent in such a manner – despite the law’s unambiguous language to the contrary. The law includes language citing a public health emergency as an example of when unobligated funds should be sent to the States.

Yet, stimulus money has been spent funding anti-obesity television campaigns to the tune of $650 million. The Department of Health & Human Services (“HHS”) has used the money to fund its Communities Putting Prevention to Work (“CPPW”), including grants to 31 states and the District of Columbia. New York City received $31.1 million, with $15.5 million directed toward anti-obesity efforts and another $15.6 million for anti-smoking campaigns. HHS referred to these as “interventions.”

What about the money spent to beautify the District of Columbia? That’s right! The District is proudly displaying signs touting stimulus money being used to pay for mulch in and around the District of Columbia, as seen in this recent photo. “This green project is funded by U.S. EPA,” reads the sign.

Sure it makes the District of Columbia look great, and is probably helping to pay for some public employee’s paycheck – but it begs the question about priorities?

To make matters worse, yesterday during a House Energy & Commerce Committee’ Oversight and Investigations Subcommittee hearing, lawmakers examined stimulus spending by the Department of Energy. Only $12.4 billion out of $35 billion appropriated has been spent thus far. Sure it was a partisan hearing, but aren’t they all in today’s political climate.

This isn’t a matter of partisan politics – especially considering the partisan debate surrounding President Obama’s stimulus package – but rather a matter of life and death. If the stimulus is good enough to pay for anti-obesity and anti-smoking ads, or landscaping projects, then surely the lives of people living with HIV/AIDS deserve the same level of commitment.

A hypothetical example yields a compelling argument that President Obama and Congress should consider:

Charlie is a 29-year old black single father living in Gadsden County Florida. He and his wife found out they were infected with HIV when she died from complications of AIDS-related pneumonia the previous year. Charlie is on a waiting list to receive AIDS drugs but between his depression and efforts to care for his children he is unable to access the help he needs to navigate the Pharmaceutical Patient Assistance Programs. He himself gets sick. He enters an emergency room in Tallahassee, FL and is subsequently admitted for a five-day stay.

His emergency room visit is near the average for this hospital at $2,783 (source Florida Heath Finder.org.) The hospital stay is near the national average of $24,000. He receives additional bills from doctors, radiologists and therapists for $750. You can compare this total to the cost of the AIDS drug he would need for an entire year. Charlie is what is known as therapy naive so the most inexpensive combination therapy drugs would be effective in reducing the virus to undetectable levels. The annual drug cost would be around $15,000 per year. Compare that to $33,830 in 6 days for hospitalization.

A penny wise, pound-foolish?

ADAPs need to be “stimulated” now with stimulus money, but more importantly, PLWHAs need Presidential leadership now. They’re losing hope!

Brandon M. Macsata, CEO
ADAP Advocacy Association (aaa+)

Wednesday, March 2, 2011

You Win Some; You Lose Some!

There has been no shortage of ADAP-related news and developments over the last month - some good; some bad!

While the crisis is national in scope, Florida's crisis is so severe that it continues to garner much of the national spotlight - even as a catastrophe was averted earlier this month (see related Fair Pricing Coalition press release below). The Los Angeles Times over the weekend ran an excellent news story, entitled "Other routes to HIV drug assistance: There are options beyond sitting on a state program's waiting list," which also included important information about where to look for help. The article can be viewed online. Earlier this month, PBS ran an online story, "Funding Shortage Threatens AIDS Drug Programs." The PBS story highlighted many of the challenges being faced in Florida. The article can be viewed online.

aaa+ released two long-awaited Public Service Announcements (PSAs) about the AIDS Drug Assistance Programs. The PSAs included a 60-second video for television, as well as a 5-minute video for the Internet. The former began airing on nearly 300 media outlets nationwide, so hopefully it will raise some much-needed awareness about ADAPs and the important role in plays in the lives of so many people living with HIV/AIDS. They can be viewed online. The PSAs, as well as the recently-convened 2011 ADAP Emergency Summit, continued to receive excellent news coverage.

There was also some much-needed good news out of Washington, DC. While the U.S. House of Representatives was debating the federal government's budget for the current fiscal year, Florida Democrat Rep. Alcee Hastings introduced an amendment to provide an additional $42 million to the cash-strapped program (Note: October 1st represents the start of the federal government's new fiscal year, but because the Congress failed to pass a budget prior to September 30th the federal government has been operating under a series of 'Continuing Resolutions' - or short-term funding mechanisms). The amendment - which is largely due to the efforts of the AIDS Healthcare Foundation - passed unanimously by voice vote. It reads as follows:

The amounts otherwise provided by this Act are revised by reducing the amount made available for "Department of Health and Human Services, Health Resources and Services Administration, Health Resources and Services'', by reducing the amount made available for "Department of Health and Human Services, Centers for Disease Control and Prevention, Disease Control, Research, and Training'', by reducing the amount made available for "Department of Health and Human Services, National Institutes of Health'', and by increasing the amount made available for "Department of Health and Human Services, Health Resources and Services Administration, Health Resources and Services'', by $14,000,000, by $14,000,000, by an additional $14,000,000, and by $42,000,000, respectively.

aaa+ was among the first organizations to applaud Rep. Hastings for his leadership on the ADAP crisis with his amendment.

The 'Hastings Amendment' - as it is known - came on the heels of aaa+ issuing its 2010 ADAP Congressional Scorecard, in which EVERY Member of Congress was given a failing grade. Clearly Hastings' amendment was a bright spot during a very dark "perfect storm" ravaging the nation's ADAPs. The rational behind the decision to fail the entire U.S Congress is actually very simple, although the decision wasn't taken lightly. Despite ADAPs enjoying strong bipartisan and bicameral support in the Congress, lawmakers failed to do anything while ADAP waiting lists exploded and thousands of people living with HIV/AIDS languished waiting for their life-saving medications. It is important to mention that some lawmakers in the U.S House of Representatives and U.S. Senate received an "Honorable Mention" for their work on ADAP last year. The 2010 ADAP Congressional Scorecard can be viewed online.

But not all the ADAP-related news has been so welcomed...

In an effort to address the rising federal budget deficit, House Republicans have embarked on a campaign to slash spending. Their first target is the current fiscal year's spending bill (same bill that the Hastings' amendment was incorporated into). Unfortunately, some of the targeted discretionary spending cuts include important 'safety net' programs, including WIC - $758M, Food & Drug Administration (FDA) - $220M, Community Health Centers - $1.3B, Family Planning - $327M, Centers for Disease Control & Prevention (CDC) - $755M, National Institutes of Health (NIH) - $1B, Substance Abuse and Mental Health Services - $96M, LIHEAP ("Low Income Heating & Energy Assistance Program") Contingency fund - $400M, and Community Services Block Grant - $405M, just to name a few. Ryan White and other HIV/AIDS-related programs have been sparred, thus far.

Meanwhile, President Obama introduced his Fiscal Year 2001 ("FY11") budget. In an effort to out maneuver the House GOP on spending cuts, his FY11 budget includes a five-year freeze on most discretionary spending programs - which didn't include Ryan White programs. While the President did propose some modest spending increases, many in the HIV/AIDS community felt that the President failed to fund these programs adequately.

The ADAP Advocacy Association will continue to monitor the ongoing ADAP crisis. Thanks for your ongoing interest and support!

Brandon M. Macsata, CEO
ADAP Advocacy Association (aaa+)