This past week in Washington, D.C., with the cherry blossoms in full bloom, about 300 HIV positive people converged on Capitol Hill demanding federal AIDS-care reform. But the posse wasn’t marching out front, waving picket signs. Indeed, they could have been mistaken for legislative staff as they strode, in business attire, among the palatial Congressional offices across from the Capitol building. Carrying binders and policy proposals, they scurried from office to office, catching meetings with Congressional Representatives, passing through hallways filled with civic-minded vacationers and a massive contingent of lobbying steelworkers.

The events marked the 14th annual AIDSWatch, organized and sponsored by the National Association of People With AIDS (NAPWA) and the Treatment Access Expansion Project (TAEP). Each year positive people from across the country head to D.C. for three days of lobbying, telling their personal tales to hammer home how seemingly abstract bills affect their lives and others’. “For people on the Hill programs become budgets and numbers,” says participant Jim Pickett, director of Public Policy at the AIDS Foundation of Chicago, who was diagnosed in 1995. “But when people come into the office and tell their stories it resonates with the legislators, like it would with anyone.”

Some 27 states sent AIDSWatch delegations of varying sizes. New York had the most, with 50 people; a woman represented Texas all by her lonesome. To better focus on the budding lobbyists’ progress during the week, POZ tagged along with the Illinois delegation. “It was wonderful,” said the state’s Lloyd Winston, diagnosed in 1986, whose travel expenses, like those of many in his state’s contingent, were covered by a scholarship from the AIDS Foundation of Chicago. “I was a little bashful, but I would definitely do it again.” Others had to raise the money on their own, some driving cross country and staying with friends. Last year one AIDSWatch-er raised travel money by standing in crowded intersections with a sign reading “I have AIDS and need to get to D.C. to see my Congressman.”

Before the PWAs hit the Hill, they spent Monday at the Human Rights Equality Center in a training session on how to effectively lobby. Robert Greenwald, Director of TAEP, presented on this year’s legislative agenda, and everyone enjoyed a free lunch. While the agenda included everything from affordable housing to microbicides, the focus was reforming Medicaid and Medicare to get HIV positive people access to effective healthcare and treatment from the day they are diagnosed.

In his presentation, Greenwald ran through the facts. Roughly half of all positive people do not have access to regular HIV care and about 65% of those that do rely on Medicaid or Medicare, while only 20% use Ryan White. “Most people in the HIV world focus on Ryan White, while the federal and state government run a roughshod on Medicaid and Medicare,” says Greenwald. In years past AIDSWatch has often focused on fighting for more Care Act funds. Greenwald contends that the Care Act is chronically underfunded and cannot get care to all positive people in need; much less the 40,000 or so newly diagnosed each year. He adds that, unlike other government programs such as Medicaid and Medicare, the Act was never intended as a primary source of health care. Instead, he says, it was meant to keep positive people from falling through those programs’ gaps.  Meanwhile, the AIDS Drug Assistance Program (ADAP), which many positive people rely on to cover prescriptions, only provides AIDS drugs, not comprehensive health care.

AIDSWatch’s No. 1 priority was pushing the Early Treatment for HIV Act (ETHA), which has bipartisan support in both houses and was introduced by Senators Hilary Clinton (D-NY) and Gordon Smith (R-Ore.) in the Senate. It is scheduled to be introduced by Speaker Nancy Pelosi (D-Cali.), Representative Elliot Engle (D-NY) and Representative Ileana Ros-Lehtinen (R-Fla.) when it comes before the House in the coming weeks. Currently, an HIV positive person must qualify for disability before they can get Medicaid or Medicare. The delay means that most positive people progress to an AIDS diagnosis before getting subsidized care. ETHA would get low-income positive people onto Medicaid from the moment they are diagnosed. “We have a disability care system, not a health care system,” says Greenwald. “And [we] lag behind almost every other [developed] country when it comes to providing effective care.”

ETHA would save 70% in Medicaid costs for HIV positive people by preventing severe illness instead of paying to treat it, reduce new transmissions by driving down people’s viral loads with meds, therefore lowering their infectiveness, and it would bolster the Centers for Disease Control’s push to get everyone tested for HIV by guaranteeing they can get treatment—and not just be left to their own devices should they test positive. Most importantly, it would also cut the death rate of HIV positive people on Medicare and Medicaid in half.

Other top agenda items included eliminating high Medicare copays and deductibles that sometimes force positive people to go without meds. The lobbyists also pushed for a law for all Medicare Part D prescription plans to include antiretrovirals, meaning plans can’t drop any one drug if the cost of covering it goes up and leave a positive person without a way to pay for part of their regimen or force them to switch.

On Tuesday morning, groups from each state collected a pile of folders they were to give to Congressional staffers explaining the requests and legislation. Then the delegations set off for two days of work. The Illinois crowd managed to make it to 18 of their 21 Representatives, including Democratic Presidential candidate Barack Obama and Former Republican Speaker of the House Dennis Hastert, working around staffers’ busy schedules, and penning in some meetings hours before they occurred. While some Representatives sat in on the sessions, most meetings were with the staffers, who actually do the research on most issues and recommend to their Representative how to vote. “Obama’s staffer was excellent,” says Winston, who had taken off his suit coat and stripped down to an undershirt due to the unseasonable 80 degree weather. “She was very informed and offered to support us on all of our requests.”

Meanwhile, four other Illinoisans sat down in Hastert’s office with staffer Chris Sarley, surrounded by mounted fish and photos of the Representative shaking hands with former Presidents Regan and Bush. “When I leave DC, I will go home and not be able to pay for my meds because I chose to pay my rent instead,” John Hawsley, who was diagnosed in 2003, told Sarley of the high deductible he faces on Medicare Part D. “And I have Medicare A, B and D. I can’t imagine the problems people without any insurance have. We need every formulary to cover at least 10 antiretrovirals.” Sarley listened carefully, but took no notes, responding, “I’m concerned about the 80 year old woman who just wants two drugs and chose the plan with no copay. Would this drive up the cost of her plan? We tried to balance the needs of different people with the different Part D Plans.”

Next Terre Taylor, diagnosed in 2003, chimed in, telling her story of working nights to get a master’s degree while raising four kids, only to discover that fewer and fewer companies were hiring secretaries full time. She had to work for several temp agencies, making it hard to pin down private insurance. “You have to have one foot in the grave and one on a banana peel to get meds,” she said in support of ETHA.

By Wednesday afternoon, most of the Illinois participants had headed to the airport, so Jim Pickett planned to meet with Charles Dujon, Legislative Director for Representative Jesse Jackson, Jr., alone. It was Pickett’s fifth AIDS Watch and the two had chatted multiple times before. Dujon, occasionally interrupted by the squeals of Jackson’s three year old son playing in the next room, efficiently flipped through the folder, said he was sure the Congressman would support the measures, like he had in the past, then brought up an agenda item of his own. “For the past three Congresses the Representative has introduced an amendment to make health care a constitutional right,” said Dujon. “In this country you have the right to carry a gun, but not the right to have health care.” Pickett nodded excitedly, “Yeah, that’s a great foundation to build from. We can start pushing that right away.”

Pickett then headed to his last session for AIDSWatch 2007 with Evan Decresce, a young staffer for Democratic Representative Danny Davis. Decresce decided to hold the meeting outside in the sun, saying he was about to go to law school and had gotten more informal. Pickett opened with: “We need a bedrock to access universal health care,” before pushing Jackson’s amendment. Decresce listened carefully and took notes, occasionally glancing across a large fountain in the courtyard at a few women sitting on a bench in the sun. Ralph Vickery, diagnosed in 1994, also joined the meeting. “This is my fifth year,” he said. “I borrowed money from my partner and drove 705 miles to get here.” Even if you missed this year’s confab, it’s not to late to visit reps in your own state and make sure it was worth the drive.