When the AIDS epidemic burst on the scene in the 1980s, a cadre of volunteers –many from the LGBT community — emerged to provide compassionate and dedicated care for the sick and dying, services that government agencies and existing charitable groups were not providing.
Since that time, the mostly volunteer-driven, community-based AIDS clinics and advocacy groups created back then have evolved into professionally run facilities receiving millions of dollars in state and federal funds. Like the Whitman-Walker Clinic in D.C., many of the clinics and advocacy groups provide a vast array of services for people with HIV and AIDS, most of whom can’t afford private health insurance.
But in March, Congress approved and President Obama signed into law a sweeping health care reform measure called the Patient Protection and Affordable Care Act. Obama administration officials say it will result in more than 94 percent of all Americans being covered by some form of private or public health insurance by 2014.
Although most AIDS activists and officials with local and national AIDS organizations have hailed the health care reform measure as an unprecedented benefit to people with HIV and AIDS, some believe the law could prompt large numbers of patients to leave the community-based clinics and seek medical care elsewhere.
With a possible loss of clients, community AIDS clinics would be in jeopardy of losing government funding, which is based on the number of clients served. It would be ironic, some have said, if the benefits of healthcare reform result in the closing of community institutions that have served people with AIDS during a time of need.
“The LGBT community and people living with HIV are going to have options that they may not have now,” said Don Blanchon, executive director of the Whitman-Walker Clinic, which has served people with HIV and AIDS since the epidemic began.
“And so for us, health care reform has been a real motivator around us improving the quality of what we do because we know we’re going to have to get better,” Blanchon said. “We know at some point in time almost every District resident is going to have some type of public or private insurance, which means they, in theory, are going to be able to go to a lot of different places for their care.”
Blanchon noted that a financial crisis that Whitman-Walker faced four years ago forced it to take steps that have placed it in an excellent position to flourish under the health care reform law. The Clinic’s board hired Blanchon, a managed care expert, to help the Clinic survive at a time when private donations and fundraising efforts were faltering.
With the board’s full approval and over the objections of some of the Clinic’s longtime supporters and volunteers, Blanchon transformed the Clinic from a volunteer model operation into a managed care type facility with the status known as a “federally qualified health center look alike.”
According to Blanchon and other Clinic officials, the new status enables the Clinic to accept a greater number of Medicaid patients as well as patients with a wide range of private health insurance. Patients covered by these programs allow the Clinic to obtain reimbursement for its services by doctors, its own pharmacy, and other service providers, eliminating the need to rely more on private donors.
Unlike other community-based AIDS clinics, Whitman-Walker will be in an excellent position to take on new patients or retain its existing ones as the new health care reform measure enables the majority of patients to obtain private insurance or Medicaid.
Under the Patient Protection and Affordable Care Act, all lower income individuals, including people with HIV, will be eligible for Medicaid coverage if they fall below 133 percent of the federal poverty level, where an individual has an income of about $15,000 a year or lower.
Under current federal law, low-income people with full-blown AIDS are already eligible for Medicaid coverage. For years, Congress has declined to pass legislation proposed by AIDS advocacy groups calling for Medicaid coverage for low-income people with HIV, with the intent of providing medical services to prevent them from advancing to AIDS.
The new law makes that legislation unnecessary after 2014, when the Medicaid provision takes effect.
Jeffrey Crowley, director of the White House Office of National AIDS Policy, calls the Patient Protection and Affordable Care Act one of the nation’s most significant advances for the care and treatment for people with HIV/AIDS.
“It will fundamentally expand access to insurance coverage for people living with HIV,” he said. “Much of that will be through the mandatory expansion of the Medicaid program.”
He said that similar to all Americans, people with HIV will also be eligible for private insurance coverage through a variety of options based on their income. Among the options will be the purchase of insurance coverage through competitive insurance exchanges. He noted that by 2014, no insurance company can deny coverage based on pre-existing conditions such as HIV or other illnesses.
Keith Maley, a spokesperson for the U.S. Department of Health and Human Services, which will administer most of the provisions of the new health care law, said people with HIV and other illnesses could be immediately eligible for private insurance coverage through high-risk pools.
Those eligible for the immediate coverage must show that they have had no health insurance coverage for six consecutive months, have a chronic health condition, and are not eligible for employer provided insurance or Medicaid.
Crowley noted that the new law has other immediate benefits for people with HIV and other chronic health conditions. As of July 1, private health insurers can no longer use a rescission, a practice that cancels a policy when someone gets sick and needs expensive treatment.
He said the law also immediately prohibits insurers from imposing a lifetime “cap” on insurance benefits. Annual limits on coverage or benefits will end in 2014, he said.
Crowley, a gay man who previously worked for the National Association of People with AIDS before joining the White House staff, said he expects most community-based AIDS clinics and local and national AIDS advocacy organizations to continue to exist after the health care law is fully implemented in 2014. However, he said most will have to change the way they do business.
“I think we know from our experience with HIV that we’ve built up a great HIV workforce,” he said. “We have a lot of expertise. I want to make sure as we build and expand an insurance system through the Affordable Care Act that these HIV medical providers are making sure that they’re part of this new system.”
“Some of them might only receive funding through the Ryan White programs, and I would say they need to look at their future and say that they need to be part of the new insurance system,” he said. “But there’s no question that we’re going to need their expertise and commitment at providing medical care going forward.”
Crowley’s reference to the Ryan White CARE Act, the largest existing federal program created to provide care for low-income people with HIV/AIDS, is expected to change significantly following the full implementation of the Patient Protection and Affordable Care Act, according to officials with a number of national AIDS groups.
Nearly everyone, including Crowley, agrees that the Ryan White program should remain, but most likely in a scaled back form. Congress passed the act in the 1990s as a means of helping cities and states that were grappling with the enormous burden of providing care for people with HIV/AIDS who lacked health insurance coverage and were overwhelming local and state hospitals and health care facilities.
Carl Schmid, director of federal affairs for the AIDS Institute, a national advocacy organization; Michael Weinstein, executive director of the AIDS Healthcare Foundation, the nation’s largest AIDS-related medical care provider; and Jose Zuniga, executive director of the International Association of Physicians in AIDS Care, each said they believe the Ryan White program will be needed for at least some services the new law does not provide.
“It will not solve all of our access issues,” said Schmid of the new health care measure.
Weinstein said that state programs to expand health insurance have been slow to enroll as many people as expected for a variety of reasons, some bureaucratic in nature.
“So I wouldn’t expect an overnight change in 2014,” he said, pointing to a need to keep the Ryan White program operating for some time after 2014.
Weinstein said that in some states, including California, Medicaid reimbursement for medical services is far lower than that provided by private insurance companies. He predicted that people with HIV or AIDS who obtain coverage under the new law through Medicaid might be turned away by private doctors who declined to take all Medicaid patients.
“The reimbursement that we receive from Medicaid or from private insurance is far below our cost and far below what we get from Ryan White,” he said of the AIDS Healthcare Foundation. “So we will suffer a hit in that regard as well as most providers.”
Weinstein said his organization has a wide variety of income streams and the lower reimbursements under the new law “won’t be a fatal blow to us.”
Blanchon of Whitman-Walker said the benefits of the new law greatly outweigh its possible shortfalls.
“Health care reform is going to be a real help to our patients and clearly to the Clinic because more of our patients are going to be insured under more comprehensive benefit programs,” he said.
“And what that means at the end of the day is the Clinic is not going to have to shell out as much free care. So we’re going to be in a position to be able to offer more services to more patients and keep them healthy, and ultimately that’s what we’re here for.”