Top 3 Things You’ll Learn
- Hurdles facing patients with sickle cell disease
- How research and development miss the mark for African Americans
- What can be done to address disparities in care for Black members
As a plan sponsor, you may not realize that some of your members face extra barriers to care that may impact their health outcomes. Health disparities are challenges facing groups of people based on multiple factors such as race, religion, socioeconomic status, disability, or gender identity. To address these disparities, we must first acknowledge them — only then can we begin to understand and mitigate their presence. Black members are more likely to see disparities in health care services, according to a poll from the Kaiser Family Foundation. And their perception is backed up when looking at the economic burden of health disparities. There was an estimated loss of $3.2 billion in earnings in 2015 because of premature deaths in Black versus white individuals.
A common inherited disease showcases the inequities for Black patients
Sometimes the best way to understand health inequities is to see them through another’s eyes.
Imagine that your underinsured sister has sickle cell disease, and you are a genetic carrier. When you talk to friends, they brag that they can get nearly anything from their doctor for pain—even when they just stubbed a toe. You take your sister to their doctor—and the physician refuses to give your sister anything. You are told to get your sister to a specialist instead—but the nearest one is over 60 miles away and not accepting new Medicaid patients. Meanwhile, you see blog posts about new treatments for hemophilia and other inherited disorders, but the news isn’t bringing your family any hope about a cure for sickle cell.
Sickle cell disease is the most common inherited disease worldwide and affects approximately 100K Americans. The CDC considers it the most common genetic disease in the world. Yet the NIH funding for sickle cell research amounted to $7K per year per affected person. Compare this with a less common inherited disease such as cystic fibrosis, where NIH funded about $17K per year per affected person. The U.S. birth rate of cystic fibrosis is one in 2,500 white individuals, whereas sickle cell disease is one in 365 Black individuals. This difference in funding caused a fundamental shift for cystic fibrosis: Between 2008 to 2018, four new drugs were approved. Only one new drug was approved for sickle cell disease during this same window.
African Americans face disparities in care for multiple disease states, not just funding for genetic disease. Compared to white men, the incidence of cancer in Black men is six percent higher, and mortality is 19 percent higher. This disparity is even more notable in Black women, who have eight percent lower cancer incidence than white women, but 12 percent higher cancer mortality when cancer is found. Also, young African Americans are more likely than whites to die from a range of conditions typically more common at older ages, such as high blood pressure and stroke.
What can we do to help address health disparities?
Ensuring every American gets equitable healthcare starts with education and empowerment. When people feel included in their care and able to voice their concerns, ask questions, and feel empowered to pursue their healthcare in a non-biased and non-judgmental safe zone, things change for the better. Some plan sponsors may choose to lower the cost-sharing for essential medications. Others may reframe information and hand-outs to ensure that there is a representation of different racial groups.
RxBenefit’s Protect program looks at all members to ensure they get the best care from a clinical standpoint and impartial quality pharmacy outcomes. The Optimize MyCare program — which screens clinical health profiles—makes non-biased reach-outs to meet members where they are to help them get the care they need.
Educate yourself on the disparities that might affect those in your plan. Be open to exploring your own internal biases and resetting your values system to be more inclusive of those from different backgrounds. Consider partnering with community groups that work to end impactful disparities via funding or education and actively explore options to empower all members to be valued and seen.
- “Addressing Health Disparities in Health Systems: From Awareness to Action” AJHP Vol 80, Issue 2 Jan 15, 2023, https://academic.oup.com/ajhp/article/80/2/10/6854799#389678386
- Study Finds Funding Disparities Between Sickle Cell Disease, Cystic Fibrosis | AJMC
- Mortality and Prevalence Data on NIH’s Categorical Spending Page | National Institute of Health
- Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) | National Institute of Health
- What is Sickle Cell Disease? | CDC
- Sickle Cell Disease: The Most Common Inherited Disease In The World | Texas Children’s Hospital
- THE BUSINESS CASE FOR RACIAL EQUITY | W.K Kellogg Foundation
- “I Think About Oprah”: Social Class Differences in Sources of Health Information | University of Delaware
- McCormack, K. (2005). Stratified reproduction and poor women’s resistance. Gender & Society, 19, 660–679. doi:10.1177/0891243205278010
- Roberts, D. (1997). Killing the Black body: Race, reproduction, and the meaning of liberty. New York: Pantheon Books
- Lareau, A. (2003). Unequal childhoods: Class, race, and family life. Berkeley: University of California Press.
- SICKLE CELL DISEASE HEALTH DISPARITIES | CDC Foundation
- Strategies for Reducing Health Disparities | CDC
- Strategies for Reducing Health Disparities — Selected CDC-Sponsored Interventions, United States, 2016 | CDC
- Toward a Historically Informed Analysis of Racial Health Disparities Since 1619 | National Library of Medicine
- Eliminating Racial/Ethnic Disparities in Health Care: What are the Options? | Kaiser Family Foundation
- According to the Cystic Fibrosis Foundation Patient Registry, in the United States | Cystic Fibrosis Foundation
- Social Determinants of Health | U.S. Department of Health and Human Services
- THE STATE OF CANCER HEALTH DISPARITIES IN 2022 | American Association for Cancer Research
- Race, History, and the Science of Health Inequities. | Boston University School of Public Health
- AMCP Partnership Forum: Racial Health Disparities—a closer look at benefit design | AMCP Partnership Forum