worry HIV activists
by Liz Highleyman
On the eve of the 25th observance of World AIDS Day, people with HIV and those at risk are well-positioned to benefit from recent medical advances, but they also face some sobering political and fiscal realities.
The election of Barack Obama to a second term as president brought relief that the Affordable Care Act - his hard-won health insurance reform package - would not be immediately overturned. But its implementation remains a challenge, and the looming "fiscal cliff" threatens budget cuts across the board.
The advent of the Affordable Care Act, which is scheduled to go into full effect in 2014, means that people with HIV can no longer be denied insurance due to pre-existing conditions.
"The ACA has the potential to expand health care coverage to nearly all people with HIV, reducing dependency on discretionary programs that must be funded annually by Congress and could be ended at nearly any time," Project Inform Executive Director Dana Van Gorder told the Bay Area Reporter.
But it remains to be seen how the transition from current programs will occur, and advocates fear some people with HIV are at risk of falling through the cracks.
The Kaiser Family Foundation estimates that nearly half of all HIV-positive people receiving care rely on Medicaid, the joint federal-state program that provides health care for low-income and disabled individuals.
Many more rely on AIDS Drug Assistance Programs (ADAPs), joint federal-state programs that cover the cost of antiretroviral treatment, and in some cases other medications and related services, for people with low-to-moderate incomes.
ADAPs are funded by the Ryan White Care Act, which also provides grants to cities heavily affected by the epidemic. Housing Opportunities for Persons with AIDS (HOPWA) provides housing assistance for people with HIV.
"One advantage of the ACA is that thousands of people living with HIV will now be able to access either private insurance or Medicaid, guaranteeing access to many primary and specialty health care services," said Tim Horn, the Treatment Action Group's HIV project director. "But we need to be careful: many people receiving HIV care through Ryan White-funded clinics have been able to access a slew of support services to maximize retention in care and adherence to treatment. We need to make sure people being switched to private insurance or Medicaid don't lose these important programs."
One group that could be heavily affected are undocumented immigrants, who are now eligible for Ryan White services, including ADAP, but will have no federal coverage under the Affordable Care Act.
In addition, the ACA is intended to be a federal-state partnership, and some state leaders have expressed reluctance to cooperate, including with expanding Medicaid eligibility and setting up insurance exchanges.
The fiscal cliff
But another, more immediate obstacle lies on the path to full ACA implementation. The so-called fiscal cliff is an outcome of the Budget Control Act of 2011, aimed at reducing the federal budget deficit. If Congress and the president are unable to agree to a package of tax increases and spending cuts, an automatic across-the-board reduction of about 8 percent in defense and non-defense discretionary spending, known as sequestration, will kick in at the beginning of January 2013.
According to amfAR, automatic sequestration cuts could cause 15,700 people to lose ADAP support for HIV treatment and 5,000 people with HIV to lose housing support. In addition, the National Institutes of Health could lose $250 million in HIV research funding - the equivalent of 460 grants - and the Centers for Disease Control and Prevention could see a $65 million cut in HIV prevention funding.
Looking at the local picture, a November 15 statement from San Francisco Mayor Ed Lee said that sequestration would, at minimum, cut $26.54 million in direct federal funding to the city.
"We would see an annual $2 million cut to Medicare, $1 million cut to housing services for people with HIV/AIDS, and over $5 million cut to education," according to the statement. "These sequestration cuts would result in the loss of tens of millions of dollars to our social safety net programs. These cuts simply cannot occur."
Activists decry cuts
ACT UP/Boston kicked off a series of protests demanding that the federal budget not be balanced off the backs of people who can least afford it. On November 21 about two dozen activists set up a symbolic Thanksgiving dinner table outside the Beacon Hill home of U.S. Senator John Kerry (D-Mass.), asking that he take the lead in preserving services for people with HIV.
"Big oil, big agriculture, and big defense contractors are all going to be advocating to keep their funding," ACT UP/Boston member Krishna Prabhu said at an action planning meeting earlier this month. "We need to do the same."
On Tuesday, members of ACT UP, Health GAP, the HIV Prevention Justice Alliance, Housing Works, Queerocracy, and others marched to the Longworth House Office building in Washington, D.C. Several activists stripped naked in the office of House Speaker John Boehner (R-Ohio), who has resisted budget deals that include tax increases.
At least three protesters were arrested, according to early reports received as the B.A.R. went to press.
In addition to domestic cuts, activists said they are worried about decreases in U.S. funding for global AIDS programs, including the President's Emergency Plan for AIDS Relief (PEPFAR) and the Global Fund to Fight AIDS, Tuberculosis and Malaria. According to UNAIDS, the U.S. accounts for 48 percent of all international assistance for HIV.
"The naked truth is that if President Obama and congressional leaders like Speaker Boehner allow these budget cuts to lifesaving programs, global health programs will lose $689 million, while domestic AIDS programs will lose $538 million," said Eustacia Smith of ACT UP/New York.
Along with preserving U.S. international aid, advocates are also pushing for a Robin Hood tax, a small tax on financial transactions that would fund global health and climate change initiatives.
"When you know that you can end the AIDS pandemic in the next 30 years, how can you not do everything possible to make sure that happens?" asked Amirah Sequeira of the Student Global AIDS Campaign.
An AIDS-free future
The threat of draconian cuts comes at a time when many HIV/AIDS advocates and public health leaders have started to talk about a light at the end of the tunnel.
"The so-called fiscal cliff will reverse the progress that we have made in the fight against AIDS, just when we have gotten ahead of the epidemic," said Queerocracy's Michael Tikili, one of the D.C. protesters.
Modern antiretroviral drugs are highly effective and well tolerated, and recent studies indicate that HIV-positive people who start treatment promptly - before their immune system sustains significant damage - may be able to live a normal lifespan. A growing body of evidence indicates that antiretrovirals also have a role to play in prevention, as HIV-positive people on effective treatment are much less likely to transmit the virus, and some HIV-negative people can benefit from pre-exposure prophylaxis, or PrEP.
With the tools now available, the challenge lies in ensuring access to HIV care and treatment for all who need it - a challenge made more difficult by limited resources.
In the U.S., the CDC estimates that one in five people with HIV do not know they are infected, and only 28 percent of HIV-positive people have gotten tested, entered care, started and stayed on treatment, and maintain an undetectable viral load.
"With ground-breaking research now showing that early and effective HIV treatment not only saves the lives of infected individuals but reduces the risk of transmission by 96 percent, a retreat in our investment in HIV prevention, care, and treatment would carry a high price tag," the HIV Medicine Association and Center for Global Health Policy of the Infectious Diseases Society of America stated in a recent letter to congressional leaders. "Any reduction in federal support for the Medicaid program will reduce access to health care for the poor and set back efforts to expand early access to HIV care and treatment."
UNAIDS' annual World AIDS Day report, released this week, shows remarkable progress, including reduction of more than 50 percent in the rate of new HIV infections in low- and middle-income countries. Over the past two years the number of people on antiretroviral treatment has risen by about 60 percent worldwide.
"We are scaling up faster and smarter than ever before," said UNAIDS Executive Director Michel Sidib . "The pace of progress is quickening - what used to take a decade is now being achieved in 24 months."
However, the report emphasizes that continued progress depends on more money. The agency estimates that $22-24 billion dollars will be required to satisfy unmet need in 2015 - some $6 billion more than the total funding available last year. Nearly 7 million people worldwide are eligible for treatment that they cannot currently obtain, and an estimated 4 million serodiscordant couples could benefit from treatment as prevention.
"Fiscal cliff cuts - which are really the imposition of European-style austerity on the HIV community and all communities - will result in needless deaths and the spread of the virus just at the time when treatment as prevention strategies suggest we can end the epidemic," said Gerry Scoppettuolo of ACT UP/Boston. "We need an increase in resources, never mind a cut, and the money is there sitting in the treasuries of corporations and banks."