Trapped in a Broken System

For the 1.2 million Americans living with HIV, the Affordable Care Act will be utterly life-changing. For some, it will be life-saving.

Just ask Will Wilson, 58, who was diagnosed with "full-blown AIDS" in 2002.

"It will basically mean freedom," said Wilson, a Chicago resident and an advocate for the Illinois Alliance for Sound AIDS Policy.

For the first time, Wilson will be able to purchase private insurance without fear of being rejected for his preexisting condition. The former graphic designer will be able to aggressively re-enter the job market without risking his continuous access to lifesaving HIV drugs that cost him $3,000 a month.

He'll have options he's never had.

This week, the Supreme Court has heard oral arguments on the constitutionality of the Affordable Care Act, specifically the legality of the individual mandate provision and the expansion of Medicaid. It is slated to rule in June on what is widely considered to be the most important Supreme Court case in decades. Many people living with HIV/AIDS and other preexisting conditions will be hoping and praying that the court rules in favor of health care reform.

In January, the AIDS Foundation of Chicago (AFC) signed on to a legal brief -- along with 130 other HIV/AIDS organizations throughout the country -- asserting that the Affordable Care Act is, in fact, constitutional. It's also necessary to stopping the AIDS epidemic in the United States.

"The list of supporters for our brief urging the court to uphold the ACA continues to grow because of the law's enormous potential to impact the domestic AIDS epidemic," said Scott Schoettes, HIV Project Director for Lambda Legal, the legal firm that submitted the brief.

About 24 percent of people living with HIV are uninsured, according to data from the U.S. Department of Health and Human Services. The majority of people living with HIV depend on Medicaid and Medicare for medical treatment.

Those unlucky, uninsured hundreds of thousands -- who are not eligible for Medicaid or Medicare -- often depend on the federal Ryan White funding system, which was never intended to be the primary source of health care funding for people with HIV when it was enacted in 1990. Ryan White provides HIV-related treatment and medication, but it's not insurance. But for many, it's the only limited option.

It's not enough just to be poor. Many uninsured people living with HIV don't qualify categorically for Medicaid, meaning they're not over 65, an infant or a pregnant woman. And they're not yet sick enough to meet the disability category.

That's a tragedy in itself. By the time many people living with HIV become eligible for Medicaid, it's almost too late. They're incredibly sick because they did not have earlier access to the drugs and treatment that could have prevented their decline.

As of 2014, the Affordable Care Act will begin expanding Medicaid to accept all low-income Americans. As a result, low-income adults with HIV will no longer have to wait for an AIDS diagnosis to become eligible for coverage.

Perhaps more importantly for people like Will Wilson, the Affordable Care Act will also prohibit insurers from denying coverage because of preexisting conditions. And no longer will insurance companies be able to charge exorbitant premiums for people with HIV.

Wilson has made his living with odd jobs, most recently a gig as a tour bus guide, since his AIDS diagnosis. He does not qualify for Medicaid. He carefully monitors his wages to remain eligible for the AIDS Drug Assistance Program (ADAP), the Ryan White program that helps low-income people afford costly AIDS drugs.

If Wilson were to pursue private insurance, he would face several daunting prospects, including being denied for his preexisting condition or being charged exorbitant premiums. Even in moving to a group insurance plan, Wilson could be subject to interruptions in his continuous care that could be detrimental to his health.

He looked into the preexisting condition insurance plans -- which are now available but vary in cost state-by-state -- but found the premiums too cost-prohibitive.

"Do I drop out of Ryan White, get denied coverage and then go to the bottom of the list?" Wilson said. "You stay with what's got you covered."

In other words, he's stuck in a broken health care system. Like many others, he's eagerly looking forward to 2014 when he can seek out private insurance that won't deny him or cost him out of the healthcare he desperately needs. So, he waits.

Around the country, HIV/AIDS advocates and organizations are intently focused on how the Affordable Care Act will be implemented. The Ryan White system is expected to be an extremely important safety net for the foreseeable future. Visit the new educational website -- -- for a comprehensive discussion of that transition.

David Ernesto Munar, president of the AIDS Foundation of Chicago, has lived with HIV for nearly 17 years. Speaking from his personal experience and his professional expertise, Munar believes healthcare reform to be critical in preventing new infections and, ultimately, stopping the AIDS epidemic in the United States.

"By expanding coverage and ensuring more preventative services like HIV testing, we can begin to turn the tide against this epidemic," Munar said.

Of course, people with HIV are not alone. There are nearly 50 million Americans with no health insurance, people of all walks with various diseases and ailments, trapped in the forgotten corners of the healthcare system. The Supreme Court will have its say on whether that's right.

In November, voters will have their say, too.

Gregory Trotter is a staff writer for the AIDS Foundation of Chicago.