New Tool Available to Fight Insurance Discrimination Against Persons Living with HIV Infection

Content From: Andrew D. Forsyth, Senior Science Advisor, Office of HIV/AIDS and Infectious Disease Policy, U.S. Department of Health and Human Services, and Oskian Kouzouian, J.D., ORISE Fellow,, U.S. Department of Health and Human ServicesPublished: June 17, 20153 min read


health insurance form

Discrimination against persons living with HIV (PLWH) can take many forms in health care. Issues that have been raised include health insurers’ charging higher premiums for those with pre-existing conditions and their use of structured prescription drug benefits that limit access to HIV medical care and antiretroviral medications.

Recently, the Harvard University Law School’s Center for Health Law and Policy InnovationExit Disclaimer (CHLPI) announced a new strategy to help PLWH fight health insurance discrimination. On May 18, 2015, CHLPI hosted a webinar to raise awareness of a series of templates that advocates, providers, and consumers can use to file complaints of discrimination directly with State Departments of Insurance (DOI).

The Importance of Filing Complaints

Many are aware that the Affordable Care Act (ACA) provides important protections against discriminatory health insurance practices that can adversely affect PLWH, such as canceling coverage because one gets sick and placing lifetime and yearly dollar limits on coverage for essential health benefits, among others.

Although the ACA’s anti-discrimination provisions have been in effect for several years, many State DOIs have not yet updated their insurance regulations to bring them in line with the law, according to CHLPI Director Robert Greenwald, J.D. As a result, health insurers in some states retain outdated policies that may limit access to HIV medical care and antiretroviral medications that can preserve health, extend life, and reduce further HIV transmission.

In the webinar, Greenwald notes additional potentially discriminatory practices by some insurers, including the imposition of high co-pays and deductibles, limited or no coverage for costly antiretroviral medications, onerous pre-authorization requirements for medications, changing coverage provisions after open enrollment closes, and requiring the use of mail-order pharmacies for antiretroviral medications.

Empowering Advocates, Providers, and Consumers

Most studies examining the impact of cost-containment strategies show that as cost-sharing increases (i.e., shifting additional financial burden of medical care to patients), medication adherence and health outcomes decline. For persons living with HIV, high cost sharing may affect adherence levels necessary to achieve and maintain virologic suppression, avoid drug resistance and avert new HIV infections.

In the webinar, Greenwald reiterated that state insurance commissioners are responsible for ensuring that state regulations are current and uphold the protections required by law under the ACA. Documenting instances of health insurance discrimination makes state commissioners aware of such practices and provides the impetus for revised insurance regulations to prevent them in future

“They are already working,” says Greenwald. “NO/AIDS Task Force, for example, used the complaint templates and this helped convince Blue Cross and Blue Shield of Louisiana to remove HIV drugs from their Specialty Pharmacy Program, allowing people living with HIV to more easily obtain life-saving drugs.”

A New Tool in the Toolkit

The webinar offers an overview of the Center’s new DOI complaint templates by CHLPI Staff Attorney Carmel Shachar, J.D., including clear guidance on how to complete and use the templates to file complaints.

With these new tools, consumers, advocates and providers have an expanded toolkit in the fight against discrimination against persons living with HIV infection. Last year, the U.S. Department of Justice released its best practices guide for reforming HIV-specific state criminalization laws and it continues to invite, under the Americans with Disabilities Act, HIV discrimination complaints against State or local governments or public accommodations (including doctors’ offices).

These and other strategies will help to achieve the vision of the National HIV/AIDS Strategy slidesExit Disclaimer are all available online.