Ending Discrimination Against the Chronically Ill: An ACA Success Story

by Maggie Morgan and Jeremy Kreisberg, JD’14, Harvard Law School

Imagine going into a restaurant and being told to leave because you have cancer. Or being denied access to a hotel because you have AIDS.

Most Americans would be outraged, and understandably so. Though we are far from a discrimination-free society, we do have laws in place that prevent businesses from excluding people simply because they have a health condition such as cancer or HIV.

However, this has not been the case with our healthcare system. Until this year, health insurance companies routinely refused to insure sick patients or charged them impossibly high premiums. This practice left millions of sick Americans without health insurance. But it was perfectly legal.

Fortunately, the Affordable Care Act (the “ACA” or “Obamacare” in common parlance), has extended anti-discrimination laws to health insurers. Since this January, health insurers can no longer deny Americans coverage or charge them more because they have a health condition, whether it is congestive heart failure, advanced-stage cancer, or HIV.

This is a huge step forward for all Americans but particularly for those suffering from chronic illnesses. But like the implementation of any new law, pockets of resistance have been cropping up: in this case, insurers who still seek to treat the sick differently from the healthy. Advocates for the chronically ill must remain vigilant in identifying and fighting these discriminatory practices as ACA implementation proceeds.

One example of successful advocacy on this front has already occurred in Louisiana. Earlier this year, Blue Cross Blue Shield of Louisiana (BCBS), the largest health insurer in the Bayou State, abruptly decided to no longer accept payments from the state’s Ryan White HIV/AIDS Program (“Ryan White”). Ryan White is a program funded by the federal government and administered by the states to help people with HIV gain access to lifesaving treatment and prescription drugs. Louisiana, like many other states, also uses its Ryan White funds to help pay for the health insurance premiums of low-income residents living with HIV. BCBS’s change in policy would have effectively excluded hundreds of Louisianans with HIV from access to health insurance, right before the March 31^st federal deadline to enroll in an ACA Marketplace plan. Many of these individuals depended on BCBS’s extensive provider network and prescription drug formulary to meet serious health needs. Worse still, Vantage and Louisiana Health Cooperative, the two only other statewide insurers on the Marketplace, quickly followed upon its heels by indicating that they too would stop accepting Ryan White payments absent federal intervention.

BCBS justified its rejection of Ryan White assistance by claiming that banning third-party payments deters fraud. Yet BCBS in Louisiana (and throughout the country) has accepted such Ryan White payments for years without any allegations of fraud.

So what changed? As of January 1, 2014, the ACA requires insurance companies to accept all applications for health insurance (a “guaranteed issue” requirement), and it prohibits those insurers from charging some people more than others simply because they are sick or disabled (a “community rating” requirement). In order to evade these consumer protections, some insurers are seeking creative ways to exclude people with significant health care needs. Indeed, as a Reuters article reported, a BCBS official told a staffer for Louisiana Senator Mary Landrieu that the decision to reject Ryan White payments was rooted in “adverse selection” concerns. In other words, the largest insurance company in Louisiana was concerned about insuring too many sick people.

After learning of this developing crisis, the HIV advocacy community in Louisiana and nationwide quickly sprang into action. In February, Lambda Legal, Ropes & Gray and Phelps-Dunbar law firms brought a federal class-action lawsuit against all three insurers refusing Ryan White payments, claiming violation of the ACA’s anti-discrimination provisions as well as state law. Advocates sent letters of protest, crafted petitions, and made phone calls to the companies urging them to change their harmful positions. Advocates also called upon the U.S. Department of Health and Human Services to put a halt to this discriminatory practice through the rulemaking process.

Fortunately, the federal court system and executive branch so far have sided with the HIV advocacy community. In February, a federal judge issued a temporary restraining order against the three insurers. Facing the threat of injunctive relief, the insurers then agreed to accept Ryan White payments through November 15, 2014. However, a final victory appeared in sight only when the federal government issued an interim final rule in March requiring issuers of Marketplace plans to accept premium and cost-sharing payments made by the Ryan White program, as well as other federal, state, and Indian programs.

This story has a happy ending (thus far) and represents a victory for the HIV/AIDS community in Louisiana and nationwide. The result has sent a message to insurers across the country that they should not feel comfortable in looking for creative ways to exclude people with chronic conditions from access to comprehensive, life-saving health insurance coverage. However, the fact that this situation even happened at all is a sure sign that the advocacy community must remain on alert as ACA implementation moves forward. The non-discrimination provisions within the ACA represent a hard-won battle for millions of sick Americans, and we must continue to ensure that insurers faithfully adhere to these requirements— for all people living with HIV and other chronic conditions.

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The views reflected in this blog are those of the individual authors and do not necessarily represent those of the Center for Health Law & Policy Innovation or Harvard Law School. This blog is solely informational in nature, and not intended as a substitute for competent legal advice from a licensed and retained attorney in your state or country.