Project Inform cited in the press

 

HOUSING WORKS AIDS ISSUES UPDATE—
Federal Report: Stop that Budget!

February 9, 2006
(mention of Project Inform in bold below)

All week on Capitol Hill, you could feel the reverberations from the 2007 budget dropped by Dubya on Monday. Bush's package was full of dizzying plus-ups for defense and homeland security—and proposals to cut even deeper into spending on domestic programs, including an election-year bid to carve $36 billion off Medicare spending over five years.

On the AIDS front, Bush unveiled a decidedly mixed bag. For the Ryan White CARE Act (RWCA), he followed up on remarks he made last week in his State of the Union address and asked for $70 million to end the ADAP (AIDS Drug Assistance Program) waitlists in several states. (Advocates contend such a move requires $303 million.) He also proposed $25 million for prevention outreach in high-risk communities.

But he asked for no more funding to shore up the myriad other components of RWCA, even though the Act has not only been flat-funded at about $2.1 billion for five years but also just took a hit with this year's 1 percent shave off all discretionary programs. What's more, the budget proposes that HHS take on the authority to move up to 5 percent of RWCA funding between titles—a change that, if incorporated by Congress, would rob localities of the chance to plow unspent RWCA funds back into their own communities.

Elsewhere, Bush proposed an added $14 million for HOPWA (Housing Opportunities for Persons with AIDS), a (mostly) brand-new $93 million for the CDC to initiate a domestic HIV rapid-testing program and $740 million more (including $300 million for the U.N. Global Fund) for his PEPFAR global-AIDS program, which would bring its total to $4 billion. He also asked for another $27 million for abstinence-only sex-education and for a $15-million cut in AIDS research. Groups including San Francisco AIDS Foundation and the Human Rights Campaign cheered and jeered the budget's AIDS requests.

But most alarmingly for AIDS advocates, Bush called for $13.7 billion more in Medicaid cuts that, according to HW legislative counsel Mike Kink, could "plunge the knife further into the backs of Americans with HIV/AIDS," 55 percent of which rely on Medicaid. Under the federal budget bill passed last week, patients can be denied drugs or care if they can't cough up new copays that may reach as high as $120 per prescription or hospital visit.

"Bush's new cuts would pile on to the serious cuts that were just passed," said Kink. "He wants to cut billions in funding that now goes to state governments—and his plan would push the cuts straight onto beneficiaries, by increasing co-pays and premiums and eliminating benefits." (See "Medicaid Math," bottom of this story.)

INSTANT RESPONSE
HW and its allies with AIDS Action in Mississippi and the national HIV Medicaid/Medicare Working Group (MMWG) have wasted no time letting key congressional offices know just how badly both recent and proposed further Medicaid cuts could hurt recipients with HIV/AIDS and other chronic illnesses and disabilities. This week, they blanketed the Hill getting that message out—an early move in what's sure to be a typical year-long battle over what makes it into the final budget.

On Tuesday, HW D.C. office staffers Robert Cordero and Larry Bryant started their day with a visit to Beth Myers, senior policy analyst in New York governor George Pataki's D.C. office, to chat about the pros and cons of the president's budget (especially as it would affect New York). They also stopped in on Ian Weston, staffer to Rep. John Sweeney (R-NY)—who, along with Rep. John McHugh (R-NY), was the only Republican congressman from New York to vote against last week's harsh Medicaid legislation.

Finally, they stopped by the office of Rep. Jim Walsh to drop off Ryan White CARE Act (RWCA) reauthorization recommendations drafted by the Ryan White Legislative Group, a coalition that Cordero belongs to. (In addition to providing swingable votes on programs like Medicaid, Sweeney and Walsh both sit on the House appropriations committee, where they have leverage to fight for increased funding for AIDS programs like the long-underfunded RWCA and Housing Opportunites for Persons with AIDS, or HOPWA).

Cordero and Bryant plan in upcoming weeks to visit McHugh's office, as well as those of fellow New York GOPers Sue Kelly and Randy Kuhl. Thanks to such visits, said Cordero, "Housing Works has become a familiar name in the offices of Democrats and Republicans alike. After a visit or two, people realize that AIDS isn't a partisan issue—it's a human one, and one that especially affects New York."

WEDNESDAY'S WARRIORS
But the full-court press began on Wednesday, when about two dozen people living with HIV/AIDS and their advocates fanned out over the Hill to bring their elected officials this message: Not only did they fear how states would implement the Medicaid cuts just passed, they were terrified of the thought of more. The constituents were organized by the HIV Medicare/Medicaid Working Group, of which HW is a part, and hailed from Ohio, Pennsylvania, Minnesota, Maine, South Carolina, Mississippi and Rhode Island—all states whose reps in D.C. hold crucial votes on Medicaid.

As part of the fan-out, MMWG member Anne Donnelly, healthcare advocacy director for the venerable California AIDS advocacy group Project Inform, accompanied a group of Maine constituents to the offices of their Republican senators Olympia Snowe and Susan Collins and Democratic reps Tom Allen and Michael Michaud. (We wanted to talk with the constituents, but they'd already hurried to catch flights back to Maine.)

According to Donnelly, the group found sympathetic ears, including staffers in the offices of Snowe and Collins, who have broken with the Republican party line to vote against Medicaid cuts. "One of the staffers told us that Medicaid had been cut to the bone," said Donnelly, "and they're hopeful that all reps will be aware of that in an election year.

Also as part of Wednesday's MMWG Hill blitz, HW's Kink teamed up with openly HIV-positive South Carolina activist Karen Bates (a winner of this year's HW Cylar Activist Awards; see story in this issue) and Duane Malone, a Jackson, Mississippi, man diagnosed with HIV in 1998 who was too sick to travel on the caravan to D.C. for the Campaign to End AIDS (C2EA) last fall but was determined to make it to the Beltway to advocate for PWAs like himself. Together, the trio visited with Ty Reagan and Ed Bonapfel, health staffers for Senators Jim DeMint (R-SC) and Lindsey Graham (R-SC), respectively, then dropped in on Reed McMillan, a staffer in the office of Senator Trent Lott (R-MS)—who popped his head in for a picture with Malone, just like he did two weeks ago after a lengthy chat with openly HIV-positive Jackson resident Almetha Williams.

According to Malone, he explained to McMillan that because he was a Medicare/Medicaid "dual-eligible," he was getting his HIV meds through the new Medicare Part D drug plan, but that if he were among the many people with HIV/AIDS or other disabilities who rely on Medicaid alone for their meds, he would now face copays totaling $160 to $320 a month for his meds under provisions just passed in the budget bill. "I'm on disability and I live on $863 a month," Malone said. "I had to let [McMillan] know that people will be dying left and right because they're not going to [be able to afford] their drugs." According to Malone, McMillan called the president's proposals "a stack of papers that's not carved in stone"—and also gave his regards to Williams and AIDS Action in Mississippi cofounder Robin Webb, whom he remembered from their recent visit.

As for South Carolina's Bates, she felt "happy and tired" after visits with her senators' staffers, during which she said she talked "about Medicaid cuts and how it affects me and all people with chronic illnesses. I have a cordial relationship with Bonapfel, so I kept trying to get him to urge Senator Graham to be an advocate for all people with Medicaid in South Carolina. I reminded him that there were elections coming up and that I wanted to work with them instead of being at odds with them."

In the afternoon, the trio visited Mississippi congressman Thad Cochran. In all, says Bates, "we got our points across. It was very helpful to have a policy expert like Mike there as well as a constituent from the state like Duane or me. You can put a face on these [issues in Congress] that they're dealing with. Legislators have a tendency to be isolated from their constituency, and this is a chance for us to let them know that what they do has an impact on real people's lives."

To get involved with the HIV Medicaid/Medicare Working Group, e-mail Laura Hanen or Robert Greenwald. Also, check out these talking points.

RYAN WHITE UPDATE
Moving from Medicaid to the ongoing saga of reauthorization of the Ryan White CARE Act, we have but one piece of news to share: Next week, the Senate HELP Committee—which will write reauthorization language for RWCA on the Senate side of the process—is expected to conduct hearings on reauthorization, with a special look at the process for RWCA clients to file grievances. We hear that the only witness will be someone from HHS—but we don't know who. Next week, we'll find out and let you know.

Medicaid Math: 2006 CUTS (1) + 2007 PROPOSALS (2) = SERIOUS TROUBLE (3)

Bush's proposed new cuts would exacerbate the serious cuts already imposed by the "Deficit Reduction Act," the federal budget bill that Congress passed last week. Bush wants to cut billions in funding that now goes to state governments—which, in turn, would push the cuts straight onto beneficiaries by increasing co-payments and premiums and eliminating benefits. Here are some of the details:

1. Deficit Reduction Act (2006 Budget):

> Gives states power to impose new co-pays and cost sharing.

> For those making $800-$1,100 per month, copays would be 10 to 20 percent of the cost of a service: for example, $120 for a single bottle of AIDS meds; $260 for multi-drug combos; hundreds of dollars more if multiple conditions exist.

> Gives states power—for the first time ever—to deny medications and services to those who can't pay. Eight percent of estimated $5 billion in savings would come from denial of care.

> Requires each state to pass new laws or regulations to impose the cuts.

2. President Bush's Proposed New Medicaid Cuts (2007 Budget):

> $13.7B in new cuts—over twice as much as last year's approved cuts.

> "Managed formulary" would allow states to deny access to FDA-approved drugs even if there's a medical need.

> Cuts to AIDS case-management could slash front-line services.

3. Serious Problems for People with HIV/AIDS:

> People with HIV/AIDS on Medicaid don't have hundreds of dollars to pay.

> "Death Penalty" co-pays more likely when states are under more cost pressure

> Nigeria is getting rid of co-pays for AIDS drugs as America is imposing them.

> Treatment adherence—and basic survival—are at risk.