Trying political times require new tactics to lobby for HIV/AIDS

Doctors are asked to step up to the plate

The ending to a highly charged political year that brought a few ups and many downs to AIDS funding and policy still leaves a major question unresolved: How can AIDS groups convince the public and legislators the domestic epidemic remains potent?

"That’s the question all of us are struggling with," says Ernest Hopkins, director of federal affairs at the San Francisco AIDS Foundation.

AIDS advocates were reminded in October during the vice presidential debate that domestic AIDS plays second fiddle to the international pandemic when it comes to the attention span of politicians. And that was the only debate in which an AIDS question was even asked.

Moderator Gwen Ifill of PBS asked the vice presidential candidates to talk about AIDS in the United States where black women between the ages of 25 and 44 are 13 times more likely to die of the disease than their counterparts.

"We sunk to our knees when neither vice president candidate could respond appropriately and when the sitting vice president said, in a genuine way, he wasn’t aware of the HIV statistics about black women at all," Hopkins says.

The lack of knowledge and interest on the part of vice presidential and congressional officeholders would be disturbing even if it weren’t accompanied by flat funding for the past four years, AIDS advocates say.

"Over the last couple of years, we haven’t seen sufficient increases in prevention funding and care funding," says Mark Del Monte, JD, director of policy and government affairs for the AIDS Alliance for Children, Youth & Families in Washington, DC.

Garnering more attention for the domestic AIDS program will become especially important in 2005 as AIDS groups work with Congress to reauthorize the Ryan White Care Act, AIDS advocates say.

"The really important emphasis placed on the global epidemic is something we all support and work on and care about, but we haven’t found a good way to make the domestic epidemic stand up along side the global epidemic in a way that we can advocate for both efficiently," Del Monte says.

Meantime, AIDS organizations are faced with a fourth year of flat funding for care and prevention, he adds. As the epidemic’s ranks increase and funding remains the same, there will growing waiting lists for HIV medications through the AIDS Drugs Assistance Program (ADAP) and for primary care treatment, Del Monte says.

Waiting lists growing

"We’re seeing more and more waiting lists developing across the country," says Gene Copello, executive director of the AIDS Institute in Washington, DC, and one of the organizers of the Federal AIDS Policy Partnership, which is a coalition of AIDS advocacy groups formed over two years ago for the purpose of pooling advocacy resources.

"Although waiting lists typically are discussed in the context of ADAP, the reality is that there are waiting lists for all kinds of AIDS services across the country," he says. "There are increased waiting times for housing, increased waiting times for social services and nutritional counseling; and we’re seeing this across the system."

If the numbers of HIV-infected individuals continues to rise — and everyone predicts it will, especially with the new push by the Centers for Disease Control and Prevention (CDC) to increase HIV testing — then waiting times and lists only will increase, Copello explains.

"The other issue is that increasingly more people are coming into the system from marginalized populations, including poor people and non-English speaking people," he says. "This means agencies will need resources for translation services and bilingual staff."

Despite the magnitude of the problems, there has been too little media and public policy attention on domestic AIDS, HIV/AIDS advocates say.

Various AIDS groups are banding together to increase lobbying power and resources, and they are seeking new ways to capture public and policy-maker attention.

For example, the American Academy of HIV Medicine in Los Angeles held a White Coat Day in May in which 20 HIV doctors took a day off their clinic work to lobby Capitol Hill in one concerted effort, says Greg Smiley, MPH, public policy director.

"The effort was successful," he says. "We targeted members of the House appropriations subcommittee who fund the AIDS programs."

The people working in the targeted congressional offices reported they thought the White Coat lobbying effort was great because they had never heard about HIV from a doctor’s perspective, Smiley explains. "We held the White Coat Day as a stunt for taking pictures on Capitol Hill because most doctors don’t wear white coats anymore. It was our way of saying, We’re another voice telling you a lot of things you’ve probably already heard, but here’s the immediacy of these needs.’"

More White Coats in 2005

The organization will hold another White Coat Day in 2005 with the goal of bringing 100 HIV medical providers to Washington, DC, he adds.

"It will be a much broader campaign next year because we need folks to reinvigorate the advocacy process," Smiley says. "Instead of always having the same people going on the Hill, we want to remind Congress that providers have a stake in this and a unique role and voice they can share."

Local and regional AIDS organizations also are looking for fresh ways to get public attention, but AIDS advocates admit they often fail to come up with new ideas.

"The problem is no one ever comes up with effective new strategies for discussing HIV/AIDS issues," says Kevin Sullivan, director of Ohio AIDS Coalition in Columbus.

"It appears to me that the general public isn’t interested in domestic HIV/AIDS cases, and I don’t know how to address that," he notes. "We are looking for guidance and community input of how we can make the public more aware of HIV/AIDS in Ohio, but we have to be realistic."

Besides HIV/AIDS, there are several emerging public health issues that have to be addressed, such as Hepatitis C, Sullivan adds.

"We need to figure out how HIV/AIDS issues fit in with those other issues and where we are on the radar screen," he explains.

The Ohio AIDS Coalition will continue to lobby Ohio legislators by bringing in HIV clients to meet with them. While often this elicits glassy-eyed looks and rude behavior, more often AIDS advocates are met with strong support, Sullivan continues. "We like to introduce legislators to people who are successfully on antiretroviral treatment because we think that sells itself. In a conservative state like Ohio, a congressman who sees a person in good health who is able to work and is a tax producer rather than a tax consumer thinks this is a good thing."

So far, California AIDS groups have had a relatively easier time lobbying their Democrat majority in the legislature, but they anticipate some rougher waters ahead as ADAP continues to need large infusions of cash to keep up with medication demands.

"This year is going to be tougher because ADAP will need $20 million to $25 million in additional funding; and in the past couple of years, we have had a surplus rebate revenue from the purchase of pharmaceuticals to cover nearly the amounts we have needed to increase the program’s funding," says Dana Van Gorder, director of state and local affairs for the San Francisco AIDS Foundation, HIV Advocacy Network.

"Our job has been to persuade the governors not to take the money and apply it to other funding gaps, but this year we may not have that additional revenue," he notes. "That means at a time when there are further budget cuts, asking for additional general fund money could be very difficult, and we’ll have to have a more effective community organizing strategy than we’ve had in the last few years."

Drawing attention

The San Francisco AIDS Foundation and other California groups have worked with providers and ADAP clients to gather at rallies, testify at hearings, and meet with legislators; and this has generally worked well, Van Gorder says.

Also, the groups have gained press coverage and usually can meet with newspaper editorial boards to ask them for an editorial position on a budgetary issue, he adds.

The American Academy of HIV Medicine has begun a new focus of bringing HIV physician leadership to local AIDS issues, as well as focusing on the national lobbying efforts, Smiley says.

For example, when some states are running into major problems with ADAP, the academy will send HIV doctors e-mail of a sample letter they could write to their local newspapers or legislators, Smiley explains.

"There are ways our members can get involved, and many do want to do what they can do," he says. "Every constituent carries weight, but medical providers carry more weight because people have this [concept] about doctors — and they do command respect."

Also, the academy has a public policy committee, consisting of 15 doctors and nurses, who look at ways to increase the academy’s involvement in the political process, Smiley says.

"There are some things we should do, like providing comments on prescription drug benefits for Medicare and how it will impact people with HIV," he points out.

The committee will address both large and small issues, such as the Medicare law that requires hospitals to do a citizenship status check on patients, Smiley notes. "Members wanted to get involved, so we cosigned a letter about what was not a favorable part of the law and how we thought it should not be implemented."

Reducing ADAP disparities

The group also has a subcommittee studying the problem of ADAP inequities and working on suggestions for reducing disparities across states, such as many Southeastern states that receive less than needed Ryan White and ADAP funds, says Smiley.

"One of the larger goals of the ADAP subcommittee is to look at ways medical providers can do their bit in keeping costs down through cost-conscious prescribing practices and educating other providers about ADAP," he adds.

Whenever possible, the academy will work to raise public awareness about HIV/AIDS and is working on a plan to train willing medical providers to speak with the media, Smiley says.

"So if a reporter calls from Kentucky and says, ADAP has a waiting list in Kentucky; do you have anyone we can talk to about it in Kentucky?’ then we can say, Yes, we have these providers who can speak with you about this,’" he explains. "I hope we can develop a series of one-pagers with one on Medicaid, one on ADAP, one on hepatitis C funding and advocacy, that providers can use — but we haven’t done it yet."

The AIDS Institute also has been working on developing material that members can use in speaking with the media, including sample letters to write to editorial pages and strategies for obtaining meetings with editorial boards, Copello says.

For example, in Arkansas, AIDS advocates have been successful in bringing attention to ADAP problems through the use of local media, he explains.

Advocates worked with local reporters, gave them information, and followed up when stories were written by writing letters to editors, Copello says.

"One issue that some of us are thinking about is how we can make sure the reporting around HIV and the challenges the HIV community faces are accurate," he notes. "And part of this is informing local reporters what the statistics are and what the challenges are for the community and what the resources are."