by Bob Roehr
"We're watching and tired of waiting," the crowd chanted at the April 27 kick off of AIDSWatch 2009, the annual Congressional lobby days. The rally was at Freedom Plaza, the vast expanse of granite on Pennsylvania Avenue between the Capitol and the White House, and the temperature matched the rhetoric, unseasonably in the 90s.
Larry Bryant said the country had declared a state of emergency over a few dozen cases of swine flu, while every nine-and-a-half minutes, someone in the U.S. is infected with HIV. If swine flu is an emergency, then HIV "is a Holocaust for my people."
Kathleen Sengstock, a member of Rep. Maxine Waters' staff, said the congresswoman is pushing three pieces of legislation to address the crisis. The Stop AIDS in Prisons Act has already passed the House. She wants to see funding for the Minority AIDS Initiative increase from about $400 million to $610 million.
Waters also is about to reintroduce a bill that would require insurance companies to include routine screening for HIV as part of their regular coverage. An estimated 20 percent of people who are infected with the virus do not know that, and increased screening would both improve their health and rein in spread of new infections.
The Medicaid program will only cover the cost of an HIV test if the person is considered at risk for the infection, an administrative barrier that physicians say impedes making screening part of routine care.
Sengstock said there are jurisdictional reasons why Waters did not include Medicaid in her legislation, but the congresswoman is trying other means to resolve the issue.
Another priority for AIDS advocates is passage of the Early Treatment for HIV Act. Currently, under Medicare and Medicaid rules, one must have an AIDS-defining illness in order to qualify for the program. The goal is to support earlier access to drugs according to current treatment guidelines.
Later in the day, the National Association of People With AIDS hosted a public forum with Jeff Crowley, the recently installed Director of the Office of National AIDS Policy. Crowley at one point worked for NAPWA.
Crowley said his office has been integrated into the White House domestic policy council. His three priorities are to develop a national HIV strategic plan, participate in the health reform debate, and focus on prevention.
The office has $1.4 million to develop a national AIDS strategy and will be adding three or four staff people. Rather than push to do it within the first 100 days of the administration, Crowley thought it more important that "we need to do this right. We need to take our time."
Engaging other parts of the administration in writing the plan helps get them to buy into it and "also to hold them accountable" for its implementation. He cautioned the audience, they are developing a national strategy, and that may look different from a community HIV strategy.
"We need to think about how we get to health reform," said Crowley. Medicare and Medicaid are the largest payers of HIV care, while the Ryan White Care Act programs are meant to fill in the gaps and special needs. He believes it makes sense to defer significant revisions in the Ryan White programs until the outline of health reform becomes clearer.
"We have a window of opportunity with HIV prevention," he said. "You are going to see more money" for it in the President's budget, but "it is not just about the money, it is about focusing what we are doing on prevention."
Crowley said they are "looking for a model [in all program activity] that will hold the federal government accountable" while at the same time promoting state and local responsibility and contributions to those efforts.
