I am honored to invite Alfred Lacks Carter, Henrietta Lacks’ grandson, to share his thoughts on this important bill and how he and his entire family are working to preserve his grandmother’s life and legacy and ensure Henrietta Lacks’ contributions to humanity are never forgotten.
Expanding and Protecting Access to Health Care is Key to Supporting Marginalized Communities
As our country continues to grapple with devastating ongoing occurrences of racial violence and systemic injustice amid the COVID-19 pandemic, I have joined my colleagues, fellow patient advocates and friends to use this time to listen, learn and self-educate on the role we must serve to protect the well-being, safety and health of communities nationwide that continue to be marginalized by our society. In a recent win for one of these communities, we joined millions across the country earlier this month to celebrate the Supreme Court’s landmark decision that gay, lesbian and transgender employees are protected by federal civil rights law from being discriminated against on the basis of sexual orientation or gender identity.
In the wake of this momentous step forward, we will remain steadfast in our advocacy nationwide to eliminate the longstanding, root causes of inequity in our country. Central to that effort is ensuring individuals that have been and continue to be marginalized are able to access health care without fear of discrimination, bias or stigma. I know undoubtedly that addressing health disparities hinges on protecting the fundamental right to access quality health care.
Just a few days prior to the Supreme Court ruling, the Department of Health and Human Services (HHS) released a final rule that removes provisions in the current health care law explicitly protecting patients from discrimination by their health care providers. Eliminating these vital protections will have detrimental consequences for Americans seeking potentially lifesaving prevention, detection and treatment services, all so important in our fight against cancer. In particular, traditionally underserved populations have significant disparities in accessing health care, including people with pre-existing conditions; women; LGBTQ individuals; people with disabilities; and people with limited English proficiency. ACS CAN stood with 28 patient and consumer groups to express our strong opposition to the changes. A coalition of LGBTQ clinics and organization have since filed a lawsuit to block the rule.
This is a stark reminder that certain individuals face continued risk of discrimination simply based on who they are. For decades, vulnerable populations have faced barriers to accessing timely health care, evidenced by the disproportionate cancer burden they bear.
- LGBTQ people often lack access to culturally appropriate medical and support services, resulting in negative experiences with providers;
- Studies show that lesbians get less routine health care than other women, including colorectal, breast and cervical cancer screenings.
- Uninsured women between the ages of 40 and 64 are half as likely to have received a mammogram in the past two years, compared to insured women;
- And, as has become devastatingly clear during the COVID-19 pandemic, racial and ethnic minorities face obstacles in accessing health care services – including lack of adequate health insurance coverage, low socioeconomic status and health literacy challenges – that are rooted in and perpetuated by systemic racial injustice. Black Americans have the highest death rate and lowest survival rate of any racial or ethnic group for most cancers. Hispanics are the most likely to be uninsured when compared to other racial/ethnic groups.
As a nationwide patient advocacy organization, we have the power and the responsibility to advance policies that address the barriers too commonly experienced by vulnerable populations, such as expanding Medicaid to cover more low-income individuals, increasing funding for patient navigation programs, and ensuring qualified health plans provide materials in appropriate languages and are reflective of cultures. At the core of each of these solutions is the commitment to protecting and expanding every individual’s ability to access high-quality health care – a right that everyone deserves.