05/01/2015 11:35 am ET Updated Feb 02, 2016

HHS Should Implement Critical Civil Rights Protections Under the ACA

Five years since its passage, more than 16 million Americans have enrolled to receive health insurance through the Affordable Care Act (the ACA)-- many for the first time. People living with chronic illnesses like HIV/AIDS now have the peace of mind that they will no longer be denied coverage because of a pre-existing condition or face a lifetime coverage cap thanks to new protections built into the law. We know that the ACA has increased access to lifesaving preventative care, and has provided critical prescription coverage for seniors and people with disabilities. Despite these real, tangible changes to healthcare, too often communities of color, low income communities, people with disabilities, and other vulnerable groups continue to shoulder an additional burden - discrimination at the hands of healthcare providers. Although the ACA can be a tool for change, five years later we are still waiting for the administration to keep one of the bill's most important promises.

The landmark civil rights provision of the ACA, section 1557, prohibits discrimination against individuals on the basis of race, color, national origin, sex, age, or disability. The ACA is also the first Federal civil rights law to prohibit sex discrimination in health care. The need for these protections cannot be overestimated. Although people of color make up only one third of the U.S. population, this community accounts for more than half of the 50 million Americans who live without health insurance every day. Without consistent insurance coverage, many individuals still do not have access to preventative care. Studies have shown that the absence of health insurance not only compounds health disparities, but can also lead to significant debt related to uncovered medical expenses. In addition to lack of coverage, discrimination in provider's offices continues to undermine the quality of care received by other vulnerable populations including people with Limited English Proficiency (LEP) and those with disabilities. Discrimination on the basis of sex also persists as barrier to complete insurance coverage and care for women across the country. Section 1557 will not only serve as a critical inroad to ending insurance coverage gaps caused by discrimination, but it will also help ensure that all patients can connect to culturally competent, truly accessible healthcare.

Although the Department of Health and Human Services (HHS) has provided informal guidance that discrimination against lesbian, gay, bisexual and transgender (LGBT) people is prohibited under this provision, the Office of Civil Rights must publish a formal regulation implementing the provision and solidifying these critical protections for LGBT people in healthcare. LGBT people face discrimination in hospitals, physician, and healthcare provider offices across the country every day. Recent studies have shown that 56% of lesbian, gay, and bisexual patients and 70% of transgender patients have experienced harmful discrimination at the hands of a healthcare provider. This discrimination takes many forms, each painful -- some life threatening. Instances of harsh language or treatment severely undermine care, while the denial or delay of treatment can lead to long-term health problems or death. In fact, nearly one third of transgender people report being denied care because of their gender identity.

LGBT people also face barriers to securing adequate health insurance coverage. In fact, prior to passage of the ACA, one in three lower income LGBT people were living without coverage. Transgender people in particular must often navigate a frustrating bureaucracy to obtain basic preventative care consistent with their gender identity. Many continue to be denied coverage of medically necessary treatment related to gender transition. Although the ACA expands access, without clear, formal regulations enforcing Section 1557 protections, the full benefits of health insurance will remain out of reach for too many.

Section 1557 of the ACA reflects the fundamental principle that everyone deserves to have access to complete, culturally competent care regardless of who they are or who they love. It is time for HHS to follow up on this promise and ensure that all patients and their families have the protections they so critically need and deserve.