Section 1557: a tool in the fight against HIV discrimination

December 15, 2015

by Ernesto Flores
HIV Prevention Justice Alliance Fellow

Since the introduction of the Affordable Care Act (ACA) in March 2010, reports show that 11.4 million people became newly insured between 2010 and 2014, and the number of uninsured dropped to about 11% in 2015. Of those people, about 48,000 people living with HIV and AIDS (PLWHA) are among those who recently enrolled.

Section 1557 is a part of the ACA that bans discrimination on the basis of race, color, national origin, sex, age or disability. While Section 1557 brings anti-discrimination regulations into the 21st century by prohibiting discrimination based on gender identity and sex stereotyping, it offers a slim definition of what it considers a disability and poorly defines discrimination and discriminatory practices. It also employs vague language in general, which opens up the opportunity for plenty of loopholes. 

Section 1557’s protection against disability also falls short of covering many major chronic conditions associated with HIV.  Although HIV is currently classified as a disability, other chronic conditions like hepatitis C are not. Hepatitis C can be asymptomatic, which means symptoms might not be noticeable until later stages of the disease. But waiting for the worst of the symptoms to appear in order to be protected by Section 1557 is not only discriminatory but cruel. By not including chronic diseases as disabilities, a large population in need is left out, like injection drug users and other people at risk.

There is an even bigger need to clarify the guidelines of what are considered discriminatory actions against PLWHA. One of the biggest issues in obtaining insurance coverage for PLWHA is insurance tiering, which is the intentional practice of making insurance plans that cover HIV medication far too expensive for most PLWHA.

For example, 63% of qualified health plans put HIV medication in the most expensive insurance tier. Not only is that a problem, but 28% of all HIV drugs are not even covered at all. In other words, PLWHA are unable to afford an insurance package that covers their prescribed medications, and if they want them, they have to pay out of pocket. This is perhaps the cruelest form of discrimination and the biggest battle to fight with proposed recommendations for Section 1557.

The most important part of these regulations is that it allows for private rights of action, which means it allows regular people to bring civil action, or essentially sue the marketplaces in federal district court, and sue insurers who have acted in a discriminatory manner. This is a chance to stand up for what is right!

Having these comments heard is crucial for PLWHA. After all, this is precisely what the Affordable Care Act was made for: to grant access to health care coverage to people who were unable to afford it, regardless of their health condition or income.

Want to get some quick background info on 1557? Check out a Center for Health Law and Policy Innovation (CHLPI) webinar about Section 1557 here.

Categorized under Advocacy, Health insurance, Inside Story and National.

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