President Obama’s newly appointed Presidential Advisory Council on HIV/AIDS adopted a resolution Tuesday urging the White House and Congress to do something they have been reluctant to do: approve $126 million in emergency funds for the struggling AIDS Drug Assistance Program.
The federal program, which is operated jointly with states, provides subsidies for life-saving anti-retroviral drugs needed by low-income people with HIV and AIDS who lack health insurance coverage.
Due to several developments, including sharp budget cuts by states, a record 1,924 people eligible to enroll in the program in 11 states have been placed on waiting lists as state ADAPs have run out of money to pay for the drugs, state officials have said. The waiting lists are expected to grow in the coming weeks and months.
AIDS activists have criticized the White House and Democratic leaders in Congress for not taking immediate steps to push the emergency funding this year, saying people on the waiting lists face possible life-threatening illnesses related to HIV without their medication.
More than 50 members of the House, including gay Reps. Barney Frank (D-Mass.) and Tammy Baldwin (D-Wis.) sent a petition to the White House earlier this year calling for $126 million in supplemental funds for ADAP in the current fiscal year.
The presidential AIDS panel, known as PACHA, adopted its resolution at a special conference call meeting Tuesday.
The conference call came after some PACHA members complained that the panel was distracted from adopting the resolution and addressing other important business at its previous in-person meeting at the White House in April by administration staffers who overly “stage managed” the meeting, according to insiders familiar with the panel.
The 24-member PACHA includes seven out gay members. It’s chaired by Dr. Helen Gale, a nationally recognized AIDS physician and former top official at the U.S. Centers for Disease Control & Prevention.
“I don’t think the PACHA is being stage managed, but I do think that it is being over handled,” said PACHA member Phill Wilson, executive director of the Black AIDS Institute in Los Angeles.
Wilson said it would be an exaggeration to characterize as a “rebellion” the call by PACHA members for a special meeting this week to vote on the ADAP resolution, as one source familiar with PACHA called it.
But he said PACHA members assigned to a subcommittee that monitors ADAP issues made it clear that it would be unacceptable for the advisory body to wait until its next regularly scheduled meeting in September to take up the ADAP issue.
Wilson and fellow PACHA member A. Cornelius Baker, former executive director of the National Association of People with AIDS and the Whitman-Walker Clinic, said the newly reconstituted PACHA appeared to be having some organizational and logistical problems.
Among other things, Baker and PACHA member Rosie Perez, actress and AIDS activist, expressed concern at the April meeting that White House officials arranged for the meeting to be held in an auditorium at the Eisenhower Executive Office Building next to the White House that was not conducive for members to conduct business.
Most of the first day of the two-day meeting in April was devoted to listening to comments by members of the public, including AIDS activists. Although a precedent for listening to public comments began under the Clinton administration, one AIDS activist attending the April meeting said it evolved into a “chaotic” town hall type meeting that prevented members — who were appointed for their expertise in various aspects of public health, medicine and public policy — from tackling issues such as ADAP.
Sessions on the second day were not open to the public, raising questions that administration staffers violated a federal law that requires all federal government advisory bodies to conduct business in public.
Christopher Bates, PACHA’s staff executive director, told activists who complained about the closed meeting that the session was limited to discussing “administrative” matters and no official business was conducted.
Wilson and Baker said this week that the White House and the Department of Health & Human Services, which has direct supervision over PACHA, were working to correct the problems, with the possibility that new meeting space would be found.
But new organizational and technical issues surfaced during Tuesday’s conference call when an audio muting mechanism prevented members of the public who were approved in advance to speak from being heard by Gale, who presided over the call.
When a roll call vote was taken on the ADAP resolution, some of the PACHA members also could not be heard, alerting the staff that a technical glitch kept the PACHA members’ phone on mute.
As required by a federal advisory body statute, the conference call meeting was announced two weeks earlier in the Federal Register, which instructed people interested in speaking during a public comment period how to dial in to the call.
A technician facilitating the conference call eventually lifted the muting mechanism to allow everyone to speak. But shortly after that happened, someone apparently called the meeting to an end while the phone lines remained open. At least two callers expressed outrage that they were not allowed to speak, and several callers began their own discussion before someone terminated the conference call.
Before the confusion began, Gale announced the roll call vote had been completed and the resolution calling for the $126 million emergency ADAP funds had been approved.
Prior to the discussion and vote on the resolution, HHS official Deborah Parham told call participants the administration would allocate $17.5 million in Ryan White funds in August that states could use for their ADAP programs. She said additional Ryan White funds were available to help struggling states in their overall programs to assist people with HIV/AIDS.
HHS recognizes “the need to improve access to critical HIV/AIDS prescription drugs and we’re working to prevent and ultimately eliminate the need for ADAP waiting lists,” Parham told call participants. But she did not say whether the administration would agree to the $126 million emergency funding allocation for ADAP called for by the PACHA resolution.
President Bill Clinton created PACHA in the 1990s. President George W. Bush retained the panel and continued Clinton’s practice of naming several gays to serve on PACHA, including several gay Republican activists.
The Obama administration did not call any PACHA meetings in its first year in office, prompting some activists to ask if the new administration planned to retain the panel. But in February, the White House disclosed it had dismissed all PACHA members appointed by Bush and introduced what it called a “reconstituted” PACHA with 24 new members.
According to Jeff Crowley, director of the White House Office of National AIDS Policy, the new members were appointed by Health & Human Services Secretary Kathleen Sebelius with White House consultation.
At the first meeting Feb. 2, Sebelius administered the oath of office for members and said she and the White House would utilize PACHA as a “platform for the administration to share our plans and insights” on AIDS programs and proposals.
“Today, I’m pleased to have a new group of experts joining PACHA,” Obama said in a statement released at the February meeting. “And I look forward to hearing from the council about our continued efforts to prevent the spread of HIV infections in the United States and to provide care and treatment to people living with HIV/AIDS around the world.”