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For HIV Advocates, ‘Unprecedented’ Moment Collides with Fiscal Worries

Demonstrators rally at the United Nations’ High Level Meeting on HIV & AIDS last summer, calling for full funding of worldwide treatment and prevention programming. Photo by Mario Tama/Getty Images.

The view from the curb looks pretty good to Raul Alonso. When his afternoon strolls get the best of him and his energy tanks, this is where he ends up — catching his breath on the side of a Los Angeles road.

But for an AIDS patient who once spent 24 days per month in the hospital, the view from the curb is solid proof that Raul Alonso is healthy enough for at least brief walks — that his 40 pills, 10 doctors and around-the-clock care are working.

“If these funding cuts mean that I’ll lose some of this support, I could end up where I was before,” he said, “Ninety pounds and basically on bed rest most of the time.”

As the United States marks World AIDS Day, the mixture of hope and uncertainty is particularly potent for patients like Alonso and the community-based organizations that serve them. At the very moment it seems the technology and know-how may finally be in place to bring about a virtual end to the epidemic in the United States, advocates say their funding base has never been more uncertain.

“We’re always trying to look around corners to see what could happen in terms of long-term funding,” said Phil Curtis, director of government affairs for AIDS Project Los Angeles. “But at this point, it’s become so uncertain that fear is the new norm.”

Some good news came Thursday morning when President Obama announced he would direct the Department of Health and Human Services to boost domestic HIV/AIDS funding by $50 million for drug and treatment programming.

Don Blanchon, president of D.C.’s Whitman-Walker Health Health, was in the audience for the speech and said the optimism was palpable. Especially when the president flatly stated, “Make no mistake, we are going to win this fight.”

“But at the end of the day it doesn’t relieve the uncertainty,” Blanchon said. “The broader questions about long-term funding remain, and those won’t be resolved until Congress hammers out the issue of the federal deficit.”

The Trigger

Much of the worry started this summer with the birth of the Congressional Supercommittee — the group that tried to put together a road map for cutting $1.2 trillion from the federal deficit over the next 10 years. Popular consensus was that if the committee succeeded, the cuts might hit many sectors of the health care industry particularly hard.

But its failure instead triggered $1.2 trillion in automatic cuts and even deeper fears that small health care organizations — like those that treat and prevent HIV/AIDS — will sustain some of the biggest losses. As it stands, the money will be evenly skimmed from security and non-security sectors of government spending.

In the health care arena, Medicaid and much of Medicare are exempt from the cuts. And as Curtis sees it, “those programs are the Big Kahunas in health care, meaning the plan for automatic cuts would shift the burden onto smaller public health programs,” he said. “Programs like ours.”

So AIDS Project Los Angeles and its sister organizations throughout the country — the same groups making sure HIV/AIDS patients maintain critical access to medical care, housing, dental care, case management, nutritional services, home health support, and other services — are nervously eyeing their funding streams.

The federal government funnels more than $2 billion toward such programming each year through the Ryan White Care Act and roughly $1 billion more through the Centers for Disease Control for HIV-related prevention and education services. Additional funding flows through the Substance Abuse and Mental Health Services Administration, the Department of Housing and Urban Development, and the National Institutes of Health. All classify as discretionary funding. All are potential targets for the looming cuts.

The Crossroads of Hope and Despair

About 1.2 million people are living with HIV in the United States today, and the medical community agrees that each of them should be on a steady regimen of antiretroviral drugs.

Easy enough to say, but those drugs are quite pricey — ranging anywhere from $1,500 to $3,000 per month, according to David Ernesto Munar, president of the AIDS Foundation of Chicago. In early November, more than 6,500 people in 12 states were on the waiting list for the AIDS Drug Assistance Program.

The president’s announcement Thursday should help partially offset those numbers. With a new infusion of $35 million in federal funds for state-based drug assistance programs and $15 million more to support HIV medical clinics, it’s expected that 7,500 more patients will receive desperately needed care and 3,000 will come off the medication waiting lists.

But will that alone be enough to significantly slow the spread of the virus? Probably not, Munar said, especially when considering that those currently receiving treatment or waiting for it are just the tip of the iceberg. According to the latest report from the CDC, nearly one in five people who have contracted HIV are unaware of their status. And only 28 percent are taking their medications regularly and have their virus under control.

Even so, the progress report’s not all bad. Far from it.

Several months ago, Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, wrote that there’s now an “unprecedented opportunity, based on solid scientific data, to control and ultimately end the AIDS pandemic.” In early November, Sec. Hillary Clinton said that she could see a path to an “AIDS-free generation” if the world steps up its commitment to the use of antiretroviral drugs, condoms, circumcision and other HIV-fighting tactics. The president echoed both of those sentiments in his speech Thursday morning.

Closer to the ground level, Munar called 2011 a “watershed year in terms of research.” He pointed with particular excitement to the recent clinical trial that showed that successful drug therapy can reduce the risk of transmission by up to 96 percent. Another study showed that giving antiretroviral drugs to HIV-negative gay and bisexual men before sex can greatly reduce their chance of infection.

“We may not have a vaccine or a cure, but in the last 30 years we’ve made tremendous progress,” he said. “And we could make even more if we brought to scale everything we know is effective.”

Advocates like Munar are most heartened by the fact that — for the first time — the United States has developed a comprehensive HIV/AIDS Strategy that offers a very specific path to making every state in the nation “a place where new HIV infections are rare.”

“We are at a crossroads here and I think our principal concern is that we may not realize all of this potential,” he said. “We have the opportunity to make such great strides. But at the same moment, it all seems to be in jeopardy.”

While the $50 million cash infusion will help, a new investment of $15 billion is the real total that’s necessary to implement the National HIV/AIDS strategy, according to Dr. David Holtgrave of Johns Hopkins University. Chances are slim that will happen any time soon.

A Simple Defense

In Washington, just down the street from the chambers of Congress where all of this will eventually shake out, Adam Tenner, executive director of the prevention and education group Metro TeenAIDS, has been re-polishing an old business pitch he anticipates needing in the months ahead.

Even if treatment and drug programs continue to receive a steady infusion of cash, public health and prevention funding has long been a prime target for Washington budget-cutters. But the approach could have devastating consequences.

Full treatment and wraparound services for someone living with HIV can cost taxpayers anywhere from $60,000 to $1 million, Tenner said. If Metro TeenAIDS prevents more than three infections per year through the peer-based prevention program it conducts in D.C.-area schools, taxpayers win.

“I generally get chastised for talking about the economics of HIV. But when we think about the impact on our community of reduced treatment, reduced prevention and reduced sex education — all of that could result in more teen pregnancies, more people visiting the emergency room, more people struggling daily with HIV — the economic impact is going to be incredible,” he said.

Turning the Page

There’s still more than a year left before the automatic cuts take effect in 2013. As with nearly every other corner of the health care industry, the right mix of lobbying, science and luck could convince policymakers to pass over the HIV/AIDS sector entirely. That scenario certainly seemed more plausible after Obama’s World AIDS Day speech, Munar said.

“It may not have been the biggest financial commitment, but the president standing and saying there is a crisis in the U.S. and that he wants to dedicate these dollars, that could bode well for us,” Munar said. “It may mean that when those across-the-board cuts are made, these programs may be held harmless.”

Time will tell.

Whatever the case, Blanchon of Whitman-Walker Health says one thing’s sure: The story of this virus and the world’s response to it has just begun. The chapters thus far have revolved around Death & Dying, Drugs, a Sea of Cash – and, most recently, Hope & Life.

“You can bet their will be more chapters. It may be the fourth or fifth critical moment where the folks working with people with HIV/AIDS have needed to evolve with an ever- changing situation,” he said. “But this clearly won’t be the end.”

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