Health Equity and DEI: Are They Synonymous?
In March of 1966, while attending the Convention of the Medical Committee for Human Rights, Dr. Martin Luther King, Jr. proclaimed, “Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane.” Almost 60 years later, his words remain true, as ensuring equal access to healthcare for those of all demographic groups continues to be a significant challenge in the industry.
Within the clinical trial space, buzzwords like “health equity” and “diversity, equity, and inclusion” are often used interchangeably. However, each concept is uniquely nuanced and should be understood before application. Below, we will review each term, contrasting their individualities to define better how and when they should be used.
A Federal Agency as an Industry Authority
The Centers for Disease Control and Prevention (CDC) is the leading health protection agency in the United States (US), charged with shielding Americans from health threats and increasing the length and quality of their lives. Originally known as the Communicable Disease Center, the CDC opened in Atlanta, Georgia, in 1946, with the mission of preventing malaria from spreading across the country. Today, the CDC is a federal organization operating under the Department of Health and Human Services (HHS).
As the nation’s leading organization focused on preventing disease and injury, the CDC has created solid definitions of the terms above.
What is Health Equity?
The CDC defines health equity as “the state in which everyone has a fair and just opportunity to attain their highest level of health.” Historically, we have not attained health equity among all demographic groups, including those of specific genders, races, and ethnic backgrounds. Those of higher wealth or education level have had access to a higher standard of healthcare, while those of lower class have had much less or no access to the care they deserve. One way of attaining health equity is working together to eliminate or lessen health disparities.
What are Health Disparities?
The CDC defines health disparities as “preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health experienced by populations that have been disadvantaged by their social or economic status, geographic location, and environment.” In essence, these differences between demographic groups lead to varying levels of healthcare.
There are many types of health disparities:
Lack of Access to Care
- Those living in poor or rural areas have less access to doctors, specialists, healthcare facilities, and research opportunities.
- Many low-income and minority groups have little, if any, healthcare coverage and cannot afford to pay for routine care and medical expenses. Many discontinue medical treatment and prescriptions due to the high costs associated with out-of-pocket healthcare expenses.
Burden of Disease
- Several chronic illnesses like diabetes and asthma affect certain demographic groups at a much higher rate, and often, treatment is not well monitored in low-income areas.
- The average life expectancy of Americans in different demographic groups often varies significantly due to socioeconomic status and access to healthcare. One study found a difference of 20 years between zip codes within the City of Philadelphia.
- There is a direct link between lack of education and early deaths, as those living in poor or minority areas do not have access to the education and testing options needed to prevent and treat disease.
- Those of lower socioeconomic groups have less access to mental health services such as counseling, with many living with undiagnosed or untreated mental health issues. If left untreated, these disorders can compound other healthcare issues.
What is Diversity, Equity, and Inclusion (DEI)?
Diversity, equity, and inclusion refer to policies within the healthcare system created to promote appreciation and respect for the similarities and differences of each individual requiring healthcare services. This acceptance includes those of all:
- Sexual Orientations
Each of these above factors combines to create a unique system of beliefs within every person. It is imperative that all stakeholders within the healthcare industry seek to understand and honor those of all backgrounds, making DEI a standard practice within the system moving forward.
Are Health Equity and DEI Synonymous?
Health equity is the goal of helping each person to attain their highest level of health, while DEI practices focus on meeting each person where they are by appreciating their uniqueness. Therefore, DEI initiatives can be instrumental in increasing health equity, as they promote representation and acceptance. Increased understanding of those with various backgrounds through DEI measures will continue to improve health equity for all moving forward.
How do Health Equity and DEI Pertain to Rare Disease Clinical Trial Participants?
In the US, a rare disease is defined as one affecting less than 200,000 people. Currently, only 5% of the more than 7,000 identified rare diseases have a United States Food and Drug Administration (FDA)-approved treatment. With so few approved therapies, a clinical trial is often the only source of hope for a patient diagnosed with a rare disease.
As many rare diseases are genetic in nature, they often affect those of a specific demographic background. Patient groups can be located in low-income or rural areas, leading to a lack of access to appropriate care. Doctors in these areas may not have any experience with the rare disease or may have limited resources available to treat the patient.
Due to a lack of health equity and many existing health disparities for rare disease patients, their access to clinical trial participation is often greatly diminished. With limited education and finances, many do not know about trial opportunities, while others cannot fathom the additional costs of participating.
It is estimated that 1 in 10 US citizens currently have a rare disease, which equates to about 30M Americans. While the number of patients with each rare disease can be relatively small, this collective population is enormous. It is imperative to keep working toward health equity by employing DEI measures throughout the healthcare industry, including within the clinical trial space.
To learn more about two female health equity and diversity pioneers, visit our Equity in Healthcare blog. The piece features: