With the new Congress split between Republican and Democratic majorities in the House and Senate, respectively, HIV/AIDS advocates across the country are anxiously watching the budget process. It’s a particularly tense time, when many states’ AIDS Drug Assistance Programs (ADAPs) have reached the crisis point.
ADAPs, which account for roughly one-third of the people currently being treated for AIDS in the United States today, provide medication to low-income HIV-infected people. Under the weight of their own burgeoning budget deficits, 10 states have turned to ADAP waiting lists as of Jan. 6, according to data released by the National Alliance of State & Territorial AIDS Directors (NASTAD).
Ann Lefert, NASTAD care and treatment director, said the increased enrollments in many states’ ADAP programs are due to increasing health care costs, along with more and more people losing their private health insurance due to the economic downturn. Add to that flat state funding for ADAP and other HIV/AIDS treatment services.
As a result, many ADAPs are bowing to deep-seated structural deficits in their attempts to both serve newly eligible enrollees as well as existing clients. As for federal funding, Lefert said it simply has not kept up with the ever-increasing demand.
The states’ waitlists all together have already forced 5,154 individuals to look elsewhere to receive the medication they need. Leading the way with its waitlists, which have grown more than two-fold cumulatively since July 2010, are Florida (2,175), Georgia (853) and Louisiana (578).
Further, at least 11 other states and Puerto Rico are also looking at cost containment measures for their own ADAPs, including adjustments to their financial eligibility policies.
Without ADAP, many individuals infected with HIV/AIDS who lack the income to purchase their own medications rely on patient assistance programs. Some are offered by pharmaceutical companies through non-profit organizations like Welvista.
In Florida, the AIDS Healthcare Foundation has recently stepped in to offer five-day supplies of medication for individuals transitioning off of ADAP to an assistance program or -- if they qualify -- Medicare Part D.
But such solutions are somewhat confusing and can be overwhelming to individuals who require stability in their lives to maintain their drug regiments. Every drug and each program has different eligibility requirements and different application processes to go through.
Lefert admitted that some individuals "fall through the cracks" of the different programs. In effect, they are going without their medication. (And yes, this is happening in the United States, not sub-Saharan Africa.)
The threat of no meds
"I would never say that 100 percent of those on waiting lists are receiving their medications through these programs," Lefert said. "I would guess some people have just been discouraged by the whole situation."
HIV-positive individuals going without medication presents a major threat not only to that individuals’ life, but has public health implications as well.
Nathan Schaefer is public policy director at New York-based Gay Men’s Health Crisis, the largest private AIDS service organization in the world. Such a scenario presents the risk of the disease’s spread as well as higher costs to the state in the future, should individuals become hospitalized, he said.
The ADAP crisis further creates wide disparities of care depending on where a person lives.
"I think the real danger that this results in are different levels of care and health care opportunities for people living in different states," Schaefer told EDGE. "People in many states will face compromised care if the places where they live are less able to create and maintain a robust ADAP."
In response to the crisis, many states have either sustained -- or in some cases, increased -- their ADAP funding. But it has simply not been enough in many cases. Jeff Graham, executive director of Georgia Equality, said the program has been popular with state legislatures, even as Georgia’s state budget has been cut by nearly 25 percent overall over the past two years. Georgia’s ADAP waiting list is expected to swell to as much as 1300 individuals by the summer without additional funding.
"The state has done their due diligence in maintaining their funding for this program," Graham said, but it’s important to recognize in these sorts of financial crises that this issue is a federal one and not just a state issue."
In their hopes to restore federal funding for ADAP, HIV/AIDS advocates are coming up against a new Congress in Washington that is looking to cut their spending wherever possible.
Some GOP don’t want any funding
Some Republican leadership in recent days has even questioned whether AIDS programs should receive government funding.
On Jan. 10, North Carolina State Senator Larry Brown (R) believes many patients don’t deserve any help. While not opposed to government support for HIV-positive children, Brown argues HIV-infected adults "caused [their infection] by the way they live." North Carolina is another of the 10 states currently running an ADAP waitlist.
While noting that ADAP has a few Republican champions in Washington, D.C. -- including Senator Richard Burr (R-N.C.) and Senator Enzi (R-Wyoming) -- Lefert acknowledged their effort to garner support for the program will be "slightly more difficult" this year, when compared to last.
Schaefer added that while there is a precedent for the federal government stepping in with emergency funding for ADAP - as President George W. Bush did in 2004 - these are different economic and social times today. And while healthcare reform will likely contribute to a better atmosphere for those infected with HIV/AIDS when it is enacted in 2014, that reform has also come under threat of repeal by Republican leadership.
"We’re not dismal on that possibility but the issue needs to be addressed presently," Schaefer said. "The federal government is not reacting in a sufficient way to address the recent [ADAP] crisis ... This crisis holds implications for so many more people than just that one individual and in the long run, it is more cost efficient to fund ADAP."
Lefert added that it is important that lawmakers hear about the ADAP issue, as it often has been overshadowed by other legislation and - therefore - not even on the radar of many leaders. Without action, she said, more states run the risk of instituting waiting lists, holding potentially grave repercussions for the virus’s continued spread into at-risk communities.
"Whether folks are in states with waiting lists or not, we need to make sure their members of Congress know this is an important issue and that it affects the community," Lefert said. "The new members of Congress especially need to know about the system of care we have for people with HIV in this country and how it really is struggling."
ADAPs, which account for roughly one-third of the people currently being treated for AIDS in the United States today, provide medication to low-income HIV-infected people. Under the weight of their own burgeoning budget deficits, 10 states have turned to ADAP waiting lists as of Jan. 6, according to data released by the National Alliance of State & Territorial AIDS Directors (NASTAD).
Ann Lefert, NASTAD care and treatment director, said the increased enrollments in many states’ ADAP programs are due to increasing health care costs, along with more and more people losing their private health insurance due to the economic downturn. Add to that flat state funding for ADAP and other HIV/AIDS treatment services.
As a result, many ADAPs are bowing to deep-seated structural deficits in their attempts to both serve newly eligible enrollees as well as existing clients. As for federal funding, Lefert said it simply has not kept up with the ever-increasing demand.
The states’ waitlists all together have already forced 5,154 individuals to look elsewhere to receive the medication they need. Leading the way with its waitlists, which have grown more than two-fold cumulatively since July 2010, are Florida (2,175), Georgia (853) and Louisiana (578).
Further, at least 11 other states and Puerto Rico are also looking at cost containment measures for their own ADAPs, including adjustments to their financial eligibility policies.
Without ADAP, many individuals infected with HIV/AIDS who lack the income to purchase their own medications rely on patient assistance programs. Some are offered by pharmaceutical companies through non-profit organizations like Welvista.
In Florida, the AIDS Healthcare Foundation has recently stepped in to offer five-day supplies of medication for individuals transitioning off of ADAP to an assistance program or -- if they qualify -- Medicare Part D.
But such solutions are somewhat confusing and can be overwhelming to individuals who require stability in their lives to maintain their drug regiments. Every drug and each program has different eligibility requirements and different application processes to go through.
Lefert admitted that some individuals "fall through the cracks" of the different programs. In effect, they are going without their medication. (And yes, this is happening in the United States, not sub-Saharan Africa.)
The threat of no meds
"I would never say that 100 percent of those on waiting lists are receiving their medications through these programs," Lefert said. "I would guess some people have just been discouraged by the whole situation."
HIV-positive individuals going without medication presents a major threat not only to that individuals’ life, but has public health implications as well.
Nathan Schaefer is public policy director at New York-based Gay Men’s Health Crisis, the largest private AIDS service organization in the world. Such a scenario presents the risk of the disease’s spread as well as higher costs to the state in the future, should individuals become hospitalized, he said.
The ADAP crisis further creates wide disparities of care depending on where a person lives.
"I think the real danger that this results in are different levels of care and health care opportunities for people living in different states," Schaefer told EDGE. "People in many states will face compromised care if the places where they live are less able to create and maintain a robust ADAP."
In response to the crisis, many states have either sustained -- or in some cases, increased -- their ADAP funding. But it has simply not been enough in many cases. Jeff Graham, executive director of Georgia Equality, said the program has been popular with state legislatures, even as Georgia’s state budget has been cut by nearly 25 percent overall over the past two years. Georgia’s ADAP waiting list is expected to swell to as much as 1300 individuals by the summer without additional funding.
"The state has done their due diligence in maintaining their funding for this program," Graham said, but it’s important to recognize in these sorts of financial crises that this issue is a federal one and not just a state issue."
In their hopes to restore federal funding for ADAP, HIV/AIDS advocates are coming up against a new Congress in Washington that is looking to cut their spending wherever possible.
Some GOP don’t want any funding
Some Republican leadership in recent days has even questioned whether AIDS programs should receive government funding.
On Jan. 10, North Carolina State Senator Larry Brown (R) believes many patients don’t deserve any help. While not opposed to government support for HIV-positive children, Brown argues HIV-infected adults "caused [their infection] by the way they live." North Carolina is another of the 10 states currently running an ADAP waitlist.
While noting that ADAP has a few Republican champions in Washington, D.C. -- including Senator Richard Burr (R-N.C.) and Senator Enzi (R-Wyoming) -- Lefert acknowledged their effort to garner support for the program will be "slightly more difficult" this year, when compared to last.
Schaefer added that while there is a precedent for the federal government stepping in with emergency funding for ADAP - as President George W. Bush did in 2004 - these are different economic and social times today. And while healthcare reform will likely contribute to a better atmosphere for those infected with HIV/AIDS when it is enacted in 2014, that reform has also come under threat of repeal by Republican leadership.
"We’re not dismal on that possibility but the issue needs to be addressed presently," Schaefer said. "The federal government is not reacting in a sufficient way to address the recent [ADAP] crisis ... This crisis holds implications for so many more people than just that one individual and in the long run, it is more cost efficient to fund ADAP."
Lefert added that it is important that lawmakers hear about the ADAP issue, as it often has been overshadowed by other legislation and - therefore - not even on the radar of many leaders. Without action, she said, more states run the risk of instituting waiting lists, holding potentially grave repercussions for the virus’s continued spread into at-risk communities.
"Whether folks are in states with waiting lists or not, we need to make sure their members of Congress know this is an important issue and that it affects the community," Lefert said. "The new members of Congress especially need to know about the system of care we have for people with HIV in this country and how it really is struggling."
Joseph covers news, arts and entertainment and lives in Chicago. Log on to www.joe-erbentraut.com to read more.
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