Clipping the Wings of HIV Legal Eagles

As 2013 draws to a close, the Affordable Care Act (ACA) and the Supreme Court ruling in June striking down the federal Defense of Marriage Act are proving to be game changers for those living with HIV/AIDS. And it is a mixed bag. The Chinese proverb about being cursed to live in exciting times applies here.

On the plus side, the ACA will (or is promised to) simplify health coverage in this country. With the end of DOMA, the increasing number of legally married same-sex couples are afforded the same federal benefits and protections as other married couples.

At the same time, the prevailing attitude that HIV has become a "solved problem" has led the public, elected officials and government agencies to curtail legal assistance to people with HIV. As bad as that is, it comes at a particularly inopportune time: ACA and the end of DOMA are raising a host of legal issues for pozzers.

"Someone said to me recently at a fundraiser that AIDS is now where March of Dimes was when the Salk vaccine was introduced," Ann Fisher, executive director of the AIDS Legal Council of Chicago (ALCC), told EDGE. "Organizations that provide legal services to those living with HIV/AIDS are really being challenged by the fact that the issue has moved off the front page."

For people who have to confront partner rights and end-of-life issues such as hospital access, HIV is far from being "solved." The piecemeal, state-by-state way that same-sex marriage is being implemented in this country is only complicating the issues involved by adding layers of nuance according to the layers of officially recognized status of the couple.

As for the ACA, HIV-positive Americans will undoubtedly be confronting discriminatory policies in the healthcare marketplace. Add to that persistent problems in the Medicaid bureaucracy and barriers to care that is culturally aware as well as medically sound, and it's easy to see that, as it always does, change brings uncertainty -- as it surely will once ACA kicks in next year.

Potential Pitfalls of Obamacare

"There's a perception that health care reform will solve everything," said Fisher. Four-fifths of legal issues for pozzers are looming on the horizon, she added, are "related to the incredible changes in health care, good and bad."

On the "good" front is increased access to healthcare. In 2014, many pozzers will be able to sign up for Medicaid for the first time ever. Others previously denied private insurance will be protected by a clause in the Affordable Care Act prohibiting discrimination based on pre-existing conditions.

Already, however, reports have begun surfacing of insurance companies denying coverage in a way that the act defines as discrimination. "We're putting those with HIV out into the wild world of American healthcare," Fisher said. "The Americans with Disabilities Act states that you cannot design plans that discriminate against people with disabilities, but now we're going to have to make these arguments, and agencies like ours will have to learn enough about insurance law to deal with them."

The HIV Health Care Access Working Group, a coalition of 126 organizations at all levels of government, is working with insurance and pharmaceutical companies, as well as the U.S. Department of Health and Human Services on issues ranging from poor access to essential HIV care and treatment information to drug formularies that omit or establish prohibitively expensive pricing for widely accepted HIV treatment regimens. Fisher envisions legal assistance agencies like ALCC joining groups like HHCAWG to pressure for-profit managed care and drug companies about HIV patients' issues.

Discrimination against those with pre-existing conditions is only the beginning of the potential problems the ACA may bring in its wake, however.

Since 1990, the Ryan White Care Act has become the most important funnel for operating money for organizations providing care and treatment for those living with HIV. With some states opting out of the Affordable Care Act, those monies may dry up for many who need them.

Because Ryan White is a "payer of last resort" program, those patients who will have access to the new programs must use them first. The American Academy of HIV Medicine anticipates that some former Ryan White patients may end up with insufficient benefits, inadequate access to medications, or less access to basic health services since the states have significant flexibility in establishing new programs.

The National Alliance of State & Territorial AIDS Directors (NASTAD) has gone so far as to recommend that Ryan White be put on hold until it becomes more clear how the ACA will impact people with HIV. According to NASTAD, even after full implementation of the Affordable Care Act, the Ryan White Program will continue to be needed to fill in gaps in covered services.

ALCC and similar legal clinics are helping clients navigate issues like access to doctors who are up to speed about the latest developments in HIV research. "People have had access at no cost from a network of very dedicated providers who are culturally competent and provide personalized, quality primary HIV care," Fisher noted. "HIV is a rapidly changing medical world, and if you're now going to some internal medicine doctor who's mostly doing school exams, there's no guarantee of quality care."

One of the benefits of implementing ACA is digitizing all medical records. But for people with HIV, this raises the issue of confidentiality. "With all this money going to states for exchange of information and universal electronic records," Fisher said, "we have to ask, 'Can we protect HIV confidentiality in this universe?'"

Starving Legal Aid Services

Issues about the varying status of same-sex couples and how ACA will impact people with HIV has led groups like the Center for HIV Law & Policy (CHLP) to change language in Ryan White that has had the effect of limiting funds for people with HIV to "legal services directly necessitated by an individual's HIV/AIDS serostatus." In the real world, such a narrow definition effectively denies funding to legal clinics that serve a wide spectrum of needs for people with HIV.

As a result, legal clinics that always operate on a shoestring may be stretched beyond the breaking point if their funding is cut off. "Patients and providers alike are going to be exposed to a whole different, gargantuan, mean-spirited bureaucracy," Fisher said. "I don't think you'll find anyone who'll disagree that a significant number of these organizations won't survive."

Loss of Ryan White-funded centers will have a particularly devastating impact on HIV positive immigrants who make up a large part of the client base for groups like ALCC. Regardless of their legal status, HIV-positive immigrants officially have no access to assistance programs for five years after they have arrived in the United States.

The CHLP cites "gross inequities in the United States immigration system" that "disproportionately harm HIV affected people, documented or otherwise, and their families. The legal, cultural, public health, and socioeconomic barriers created by the broken immigration system in the United States create substantial obstacles for people living with HIV and their advocates."

Striking down DOMA, at least, has meant that the immigrant spouse of a same-sex American will finally receive legal status -- and, hence, access to federal programs. Federal recognition of marriage, however, has only added to the workload of HIV legal clinics. Among other issues, they have to navigate which programs and benefits are governed by state governments, and which by the federal government.

Christine Malcom is a Lecturer in Anthropology at Roosevelt University and Adjunct Faculty in Liberal Arts and Visual and Critical Studies at the School of the Art Institute of Chicago. She is a physical anthropologist, theater geek, and all-around pop culture enthusiast.

This story is part of our special report: "Live a Life Worth Living". Want to read more? Here's the full list.