Uneven rollout of Medicaid expansion leaves HIV, AIDS patients in limbo

William Wilson has one word for what health care reform means for him: freedom.

Eleven years ago, Wilson was diagnosed with AIDS in Chicago. He had health insurance that he purchased as a self-employed graphic designer before his diagnosis. Wilson continued paying his health care premiums for a year and a half following his diagnosis, but said his health insurance provider denied the vast majority of his claims. Enormous medical expenses soon forced Wilson into bankruptcy. He says he could not obtain health insurance of his own because of his pre-existing condition.

The freedom Wilson talks about is the ability to get many more of his health needs met, obtain insurance without discrimination and have less stigma attached to getting his health care. Wilson won't have to work around the income limitations that previously forced him to maintain a low income in order to be eligible for existing federally funded HIV/AIDS programs, or live without insurance.

Gina Brown, who lives in Louisiana, isn't so lucky.

Lawmakers in Wilson's state of Illinois have thrown their support behind both health care reform and Medicaid expansion. Those in Louisiana have not. When states don't participate, the federal government will help set up exchanges that some fear will be weaker. The health care exchanges are slated to go live Oct. 1 and the coverage will take effect Jan. 1.

The health care exchanges under the Affordable Care Act, in the states that participate, could see to it that 20 to 30 percent more HIV-infected people are covered, according to experts.

With health care reform, also referred to as Obamacare, Wilson will have access to far more comprehensive medical coverage and subsidies for health insurance. Health reform encompasses a full package of benefits deemed "essential" to his health, preventive services, health screenings, access to mental health care and much more. For the first time since his diagnosis, his HIV status won't be a barrier to getting insured.

Access to health reform depends on which state you live in, and legislators in some states – particularly in the South and Southeast, and some Republican-controlled states in the West – have balked at health care reform, meaning it may be harder to get it moving ahead.

Brown, who lives in New Orleans and was diagnosed with HIV when she was pregnant in 1994, is enthusiastic about health care reform "if it is rolled out correctly."

She referenced Massachusetts, when people living with HIV and AIDS became fully insured and infection rates went down under health reform implemented by then-Gov. Mitt Romney, a Republican, as a positive example.

Republican Gov. Bobby Jindal, in Brown's home state of Louisiana, rejected both health care reform and the Medicaid expansion. Michigan Gov. Rick Snyder, also a Republican, recently broke ranks with his party to support the Medicaid expansion.

Brown worries the federal government's exchanges in states such as Louisiana could be inferior to those set up in fully participating states.

"Governors are much better positioned to negotiate rates than the federal government," she said. "Of about 17,000 people living with HIV/AIDS in Louisiana, at least 5,000 would have been eligible for expanded Medicaid."

For those left without coverage, the AIDS Drug Assistance Program (ADAP) and The Ryan White Program, two federally funded programs many consider to be lifesavers, will continue to provide services. The relative patchwork system provides HIV and AIDS medication to low-income patients (ADAP) and other HIV-related services not covered by other sources (Ryan White).

Brown credits Ryan White and ADAP with keeping her healthy and making sure she did not pass the HIV virus to her baby while she was pregnant.

"As long as Ryan White remains available, I think people with HIV or AIDS in Louisiana will do fine," she said. "We really have to make sure that these federal programs continue to be funded."

William Wilson, who was accepted into ADAP and the Ryan White Program, has found himself needing to limit his potential income in order to remain qualified for his medication and other services through ADAP and the Ryan White Program.

Dazon Dixon Diallo, founder and president of Sister Love in Atlanta, whose mission is to eradicate HIV/AIDS in women and their families, said states refusing the Medicaid expansion are missing an opportunity to care for more HIV-infected citizens.

"When Medicaid expansion is not going to happen (in certain states), that means 20 percent to 30 percent of people with HIV who would have been eligible will not get services through Medicaid and health reform," she said.

Dr. Michael Saag, director of the Center for AIDS Research, University of Alabama at Birmingham, put it this way: "If we didn't have Ryan White, HIV-positive patients would be in jeopardy, but we do have Ryan White so care will be no different than it has been for the past 20 years, when Ryan White began."

Steven Vargas of Houston was diagnosed with HIV in 1996 and has participated in the Ryan White Program since 2004. Vargas, who is Latino, gets his medication through private insurance but worries about others who might not have the means.

"Overwhelmingly, not expanding Medicaid hits people of color and the undocumented," Vargas said.

Kali Lindsey, director of legislative and public affairs for the National Minority AIDS Council, said he has "mixed emotions about health reform."

Lindsey acknowledges the Ryan White Program is "a bit of a patchwork system, ultimately not desirable," and that health care reform will finally offer people with HIV the chance for comprehensive care. Yet he worries that in conservative states the lack of commitment to health care reform and Medicaid expansion will create barriers to access.

Dena Gray of Houston, also says that she is "all for health reform," but she expects a rocky transition in Texas, where the state legislature has blocked Medicaid expansion. Gray isn't sure what options she will have under a federally run health care exchange and whether she will be able to find a knowledgeable doctor.

"I've been comfortable working with a doctor who understands HIV, how to manage it as a chronic illness," said Gray, who worries she'll have to change doctors if she enrolls in a new program. "I have no desire to upset the coverage for me and my four children and one grandchild, possibly giving up a visit with an HIV specialist for a 15-minute visit with a primary care physician."