Deaths on ADAP Waiting List Point to Need for Emergency Spending Bill, Activists Say
By John Reichard
CQ HealthBeat
November 9, 2006
The deaths of three patients on a South Carolina waiting list for lifesaving AIDS drugs demonstrate the need for an emergency boost in federal funding for the medications, according to an advocacy organization for AIDS patients.
Another death is expected in the next few days in South Carolina, said Bill Arnold, the chief executive officer of the group, known as the Title II Community AIDS National Network. Without enactment of emergency spending measures in Congress or the South Carolina legislature or both, the current waiting list of almost 300 patients with HIV will climb to about 350 people by Christmas, Arnold said.
The Title II Community AIDS National Network is funded by AIDS organizations, drug companies and "private donations," Arnold said.
"Title II" refers to the provision of the Ryan White CARE Act that funds "ADAPs," or AIDS Drug Assistance Programs. States run ADAPs with federal assistance to provide AIDS drugs to people with HIV who are unable to afford the medications.
Arnold said that last time deaths occurred among people on ADAP waiting lists - about two years ago - President Bush obtained congressional passage of a $20 million emergency spending measure that funded treatment for 1,000 people for a year. The measure was not renewed and the funding was not added to the federal spending baseline for the Title II provision, Arnold said.
He said the waiting lists reflect inadequate state and federal funding.
Where no lists exist, states are providing "more than a token level of funding" and enough federal money is coming in to help states keep up with demand for AIDS medications by the uninsured or underinsured, he said.
Congress has yet to enact fiscal 2007 funding for ADAP and current indications are that when it does, the federal spending levels won't increase - despite an ever-growing number of patients who need ADAP-funded medications, Arnold said. But he added that his organization is hopeful that Congress will take up an emergency spending bill to boost federal outlays above current levels either in the lame-duck session of Congress or early next year.
"We have been asking for $197 million in additional federal funding for next year's ADAP budget," Arnold said. "This would be enough to fund a year's treatment for about 16,607 new ADAP clients in all states and territories. At this point, however, ADAP could even be flat funded in fiscal 2007. If that is the case, we must expect more awful news like this in the coming months."
Flat federal funding won't slow down the growth in South Carolina's waiting list. The list now stands at 285 and is growing by eight to 12 people per week, said Lynda Kettinger, director of the STD/HIV Division in the South Carolina Department of Health and Environmental Control.
Kettinger said her department has prepared a $5 million budget request that would serve current clients and end the state's waiting list. The state is contributing half a million dollars now to its ADAP program, Arnold said.
Kettinger said her department's request won't be considered by the state legislature until next year. When asked the odds that the legislature will comply with the request, Kettinger declined to speculate, saying "we're working very hard to explain the need for this."
The increase of eight to 12 people per week will occur indefinitely in the absence of increased ADAP funding, she said.
Arnold said South Carolina has the longest ADAP waiting list by far, with Indiana a distant second with 33 people. As of October, six states had waiting lists and three others had other types of ADAP cost-containment strategies in effect, he said. A half-dozen other states said they expect they'll have to start waiting lists or other cost-containment strategies at current federal and state funding levels.
Arnold said his organization currently has no sponsor to push for an emergency supplemental, but he said "we're working on it." The New York House delegation unsuccessfully requested a $105 million in emergency ADAP funding six months ago.
Arnold said the three people who died actually were on medications, but in the absence of ADAP enrollment were dependent on efforts by local volunteers and case managers to line up coverage. When that happens, they typically get medications when their infection is at an advanced stage and they may not be consistently getting the right medications, he said.
Department of Health and Human Services spokeswoman Christina Pearson said HHS Secretary Michael O. Leavitt "has called on Congress to reauthorize the Ryan White CARE Act in ways that will improve the program, support compassionate care and treatment and encourage prevention efforts. We're continuing to actively work towards this goal- the House has passed a bill we support and we are hopeful that the Senate will act soon." Asked whether the administration would support a emergency spending bill, Pearson said the White House Office of Management and Budget would have to answer that question.
Oklahoma Republican Sen. Tom Coburn said in a statement issued by Arnold's group that "the ADAP waiting lists are the tip of the iceberg. There are thousands of people with HIV who are not being treated in America that aren't even on waiting lists," Coburn said. "This is unacceptable when the federal government is spending billions every year on HIV/AIDS."
"Congress must provide the necessary funding to care for these and other Americans who lack proper health care in a fiscally responsible manner,"
Coburn continued. "This requires making tough decisions such as abandoning the billions of dollars in 'pork' projects and earmarks contained in the appropriations bills we will vote on later this month," Coburn said.
Senator Tom Coburn
Subcommittee on Federal Financial Management, Government Information, and International Security
340 Dirksen Senate Office Building Washington, DC 20510
Phone: 202-224-2254 Fax: 202-228-3796
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