Two Republican U.S. Senators have introduced legislation to help struggling state AIDS Drug Assistance Programs by using money from the federal economic stimulus package that was signed into law last year. But Democratic lawmakers, who have traditionally supported HIV/AIDS legislation, have yet to sign on to the proposal.
The Access ADAP Act, also known as S.3401, was introduced in May by Republican senators Richard Burr of North Carolina and Tom Coburn of Oklahoma. Two other Republican senators, Michael Enzi of Wyoming and George Lemieux of Florida, have co-sponsored the bill.
This legislation would allow for $126 million to be appropriated from unobligated discretionary funds in the American Recovery and Reinvestment Act. Because the money is already allocated, no additional funds would have to be found or taken away from other programs. The money would shore up the struggling AIDS Drug Assistance Program (ADAP) in states that have instituted waiting lists or other cost-cutting restrictions that prevent HIV-positive people from getting the medications they need to stay alive.
According to the National Association of State and Territorial AIDS Directors (NASTAD), which monitors the ADAP situation nationally, as of Aug. 12, there were 2,937 people on waiting lists in Florida, Hawaii, Idaho, Iowa, Kentucky, Montana, North Carolina, South Carolina, South Dakota, Utah, and Wyoming.
In addition, the following states, while not establishing waiting lists so far, have instituted cost containment strategies such as lowering eligibility levels and reducing their formularies, which also restrict access to antiretrovirals: Arizona, Arkansas, Colorado, Illinois, Louisiana, Missouri, North Dakota, and Washington.
Murray Penner, Deputy Director of NASTAD, acknowledged the many challenges facing state budgets. But he also notes some successes. "North Carolina is a great example and so is Wyoming where we've seen state legislators step up and say, 'We have to be part of the solution' and they put money forward. You'll see the waiting list numbers go down from what they were most recently because North Carolina has been able to enroll almost 600 people back into their program."
So what motivated Senators Burr and Coburn to introduce the bill? Though both have a history of supporting HIV/AIDS funding from Ryan White to ADAP, this is a hard time to propose any kind of funding. Senator Coburn is also a doctor and perhaps understands, from a medical standpoint, the costs, both financial and in human terms, of people not being able to get treatment. In a phone interview, Senator Burr told PA, "I think it's common sense. The compassionate thing to do is to make sure people get the medications they need. But if you look at it from a budgetary standpoint, it's much more cost effective to provide medication than it is to treat the devastating effects for individuals who don't receive treatment."
When asked if he thought most of his Congressional colleagues understand that, he said, "No, I think very few do or this would not even be an issue."
Penner agrees that there is a definite need for education, both of state and federal political leaders. "I think it's always a struggle to convey the understanding that it's cost saving to provide money for a program like this." He continued, "Plus, as a country, we're much more focused on treatment, on trying to fix something once it goes bad than we are on trying to prevent things."
Commenting on the lack of Democratic support for the bill, Burr said it was "shocking" and theorized that it wasn't a result of political maneuvering, but rather the fact that "it wasn't a Democratic idea." But according to Burr, "Authorship isn't what's important to us. If Harry Reid [the Senate majority leader] said, 'It'll pass tomorrow, but I've got to put my name on it,' we'd give it to him."
Reid's office was called for comment, but did not respond.
Asked how he would go about convincing his colleagues to vote for the bill, Burr replied, "I think we'd look at this somewhat like members of Congress have looked at SCHIP [State Children's Health Insurance Program]. There are some populations you focus on because of their vulnerability and, more importantly, the long-term impact you can have on overall health care costs." He acknowledged that compassion plays a role, but added, "When you're talking about selling it to the body that makes appropriations, sometimes you've got to break it down into dollars and cents."
"I think it's safe to say that most members of Congress don't like to get into health care, one -- and two, probably are pretty aggressive at not getting involved in HIV/AIDS."
-- U.S. Senator Richard Burr, (R., North Carolina)
Senator Burr admitted that it was hard to say how long it would take for it to pass. "I think it's safe to say that the likelihood of a stand-alone bill passing is probably slim to none, so Tom and I are looking for a vehicle that we think the President would sign that we can amend with this language."
Burr noted the recent infusion of $25 million, which may be due in part to his and Coburn's efforts, but acknowledges that it's a "drop in the bucket." He wondered, "If you recognize that $25 million has a positive quality of life story, then why wouldn't you do the full $126 million and take care of everybody on the waiting list?"
While the $25 million doesn't meet all the need, it is a "bit of relief," and Penner thinks that the Obama administration was smart in making the money a part of the existing program as an administrative supplement to current grants, which then makes it flow pretty quickly. He estimates that "$25 million will be out the door by a month from now [August 15]." He also said he hopes that if Congress passes S.3401, they would "do some similar type of vehicle that would actually get the money moving."
According to Brendan Macsata, CEO of ADAP Advocacy Association (aaa+), the thing that would perhaps be the deciding factor would be for President Obama to join in the fray and propose something. As he said, "The community still has hope in him, despite his poll numbers," and he noted that Obama is the first president to establish an Office of National HIV/AIDS Policy and to bring the dialog to the forefront.
In light of the unveiling of the National HIV/AIDS Strategy on July 13, would the Strategy provide support for S.3401? Senator Burr replied, "I don't think so. There's just such a disconnect between members. I think it's safe to say that most members of Congress don't like to get into health care, one -- and two, probably are pretty aggressive at not getting involved in HIV/AIDS."
If it's not a question of political will, does ignorance, stigma, or the categorization of HIV/AIDS as a "behavioral disease" play a part in politicians' slowness to act?
Burr theorized that it was "all of the above." Macsata agreed, "Stigma exists. HIV is not glamorous. Fighting cancer is glamorous. Investigating autism is glamorous."
Macsata also made the point that of the three major players -- the pharmaceutical industry, the state governments, and the federal government -- only the federal government has failed to pitch in. Asked if he was satisfied with the efforts made by the pharmaceutical companies to stem the tide, he said, "They're certainly trying. The Fair Pricing Coalition and NASTAD deserve credit for going to the companies and negotiating, asking them for help and some are doing more than others, but really, it's the federal government that needs to step up."
Penner commented, "We're very pleased that the pharmaceutical companies have stepped up to the plate and have made additional concessions, instituted price freezes, and done other creative things to be a part of the solution."
When asked if NASTAD expects to see a decrease in the number of people getting tested because they're afraid they won't be able to access treatment, Penner said, "I think it's a double-edged sword. Some folks will hear that their programs are closed and therefore not test, but with the CDC emphasis on testing and now, the national strategy and the goals of actually getting more people identified and into treatment, I think it's going to push more individuals who might not know the care side is constricted to test and learn their status. I think you're going to see some of both that is unfortunately going to contribute to this continued challenge of not having enough resources."
As always, the best way for individuals to have an impact on the outcome of this legislation is to communicate -- by letter, phone call, or e-mail -- with their Congressional legislators. As Senator Burr contends, "When there are not a lot of options, quite frankly, the human face behind the issue is a very compelling thing." And for Senate bill 3401, there aren't a lot of options.
Even if S.3401 does pass and the $126 million finds its way to ADAPs across the country, it is only a temporary band-aid. When asked if he had any plans to propose legislation that would create a more permanent funding mechanism for ADAP, Senator Burr replied that he and Coburn were "in discussions now as to how to change the system so that this isn't an annual process that we go through. I think it's a fairly easy calculation to make, at least from how we look at it, as to what the needs are going to be." He added that he thought the current state budget crises were just the tip of the iceberg and stated, "Tom and I share a fear that potentially this is going to be a population that's thrown overboard first. I hope we can find the right category to put this in where it receives the funding and the importance and the attention it deserves."
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