by Bob Roehr
WASHINGTON, D.C. – Hundreds of AIDS advocates rolled into Washington for the annual lobbying effort known as AIDSWatch. April 23 was dedicated to briefings before they headed to Capitol Hill on the following days.
Several of the speakers railed against past Republican control of Congress and hoped for better things under the Democrats. But they also acknowledged that is not going to be automatic.
"For the last thirteen years we all have been in the wilderness. All of the progressive organizations are coming to the new leadership with their requests because they have been devastated as well. We are one among the many," said Allison Herwitt, legislative director of the Human Rights Campaign.
"Even though we have fair-mind leaders that deeply, deeply care about our issues, their reality up on Capitol Hill is that we don't have a 1960s liberal Congress, we have still, a fairly conservative Congress," she said.
Judith Billings, chair of the board of the National Association of People With AIDS (NAPWA), said, "We have to give them some guts to do what is right, so that they aren't afraid that if they propose the right things, the correct things, the just things, that they are not going to get thrown out in the next election."
Rebecca Haag, executive director of AIDS Action, urged the advocates to tell their personal stories of how HIV affects their daily lives. Talk about the stigma, what it is like to tell a person that you are dating or your family that you are positive, of choosing between being able to buy food or the drugs that keep you alive.
When you speak with Congressmen and their staffs, "You want to be clear that they are letting you down. Here is what you need and how they can help. It's their job to figure out what the laws should be and what the money should be."
"We have to stand united," Haag said. The"shameful" thing about reauthorization of the Ryan White CARE Act last year was that it pitted urban and rural communities, the north and south, blacks and gays against each other. "We will not win if you allow them to divide us again."
"Finally, you have to get involved in state policy and budget. We will not solve this problem just at the federal level. The states that have gotten their state legislatures to fund programs, to get HIV in the state Medicaid plan, those are the states that are in better shape. We cannot ask the federal government to do what our own state and local governments are not going to do."
Robert Greenwald, director of the Treatment Access Expansion Project, said, "We have a disability care system, not a health care system. Estimates are that about half of people living with HIV in the US do not have access to health care – and most members of Congress do not know that."
"People [with HIV] rely on rely on a patchwork system to get their care," and that has become its own full time job. While the Ryan White program gets most of the public attention, it pays for only 17 percent of treatment; three-quarters of treatment dollars come through Medicaid (51 percent) and Medicare (26 percent). "We have to start paying attention to Medicaid and Medicare because that is where the money is."
"We live in the richest country in the world. We should demand that the government prioritize health care, that they create a national health care system," said Greenwald. "The reason they can't do it is because there are so many entrenched hands in the pot."
One legislative priority is the Early Treatment for HIV/AIDS Act (ETHA), which will allow states to offer low income persons access to HIV treatment – under Medicare before they become sick and disabled, as the current law requires.
Greenwald said it "could reduce the death rate of people living with HIV/AIDS in the United States by 50 percent, overnight." And over the long term, the program will save money.
Senators Gordon Smith (R-Ore.) and Hillary Clinton (D-N.Y.) are the lead sponsors of the ETHA. Curiously, Clinton's leadership on this issue has caused Barack Obama's political handlers to drag their feet on his signing on as a cosponsor.
In the House, Speaker Nancy Pelosi (D-Calif.) has agreed to be cosponsor along with Ileana Ros-Lehtinen (R-Fla.). She wants to hold off on introduction to allow for more members to sign on as original cosponsors, to ease passage of the bill.
But the bottom line is that it all comes down to money. Greg Smiley, a lobbyist with the American Academy of HIV Medicine, laid out the "need" for increased funding in six priority areas for HIV (see sidebar). He said, "You know things are bleak when the NIH, one of the most popular programs in the Congress, is getting flat-funded."
The reality is that there is only $2-4 billion in the total health budget where there is some flexibility for "new" funding. He said, "Some congressional staff aides have acknowledged that these programs have been starved for the last five years, we can't make all of that up in one year," they need to do it in steps over a number of years.
Smiley reminded the advocates that their job is to make the case for the need for funding these programs "at a normal, healthy, sustainable level," it is not their job to figure out how to pay for it. "Even though we have a sympathetic Democratic Congress, we are not going to get everything that we need."
