By IGT Scientific, Academic and Medical Council Chair Donna M. Christensen
April is National Minority Health Month, a time to recognize the gaps that exist in healthcare for people of color and to promote health equity. As Chair of the Institute for Gene Therapies’ Scientific, Academic & Medical Advisory Council, I aim to help facilitate these important conversations and work in partnership with our members to accomplish these goals.
As a former physician, delegate from the U.S. Virgin Islands in the House of Representative and chair of the Congressional Black Caucus’s Health Braintrust, I have devoted much of my career to health equity issues. My work centered around helping end health disparities for minority communities and women, fighting HIV/AIDS in the U.S. and globally, and extending health insurance coverage to the underserved. Since leaving Congress, I have continued to look for ways to improve healthcare access for all Americans.
While racial inequalities in our healthcare system have been on the minds of policymakers for some time, the COVID-19 pandemic shined a bright light on the issue and has spurred renewed efforts to create real and lasting change.
The challenge is vast and complex, but every step in the right direction gets us closer to a more equitable future. At IGT, we are focused on ensuring access to gene therapies for all appropriate patients regardless of race or ethnicity.
To be successful in that mission, we must catalyze new ways of thinking across the continuum of care, including:
how we screen for disease,
how we research treatments, and
how we make those treatments accessible for all who need them.
First, there’s an understanding that certain inequities in the system contribute to delayed diagnoses for people of color. Particularly when it comes to rare genetic diseases, early diagnosis is key to getting the right care as soon as possible. IGT advocates for broad and consistent use of newborn screening, which was the subject of Congressional action in the last Congress. To learn more about how improving access to newborn screening can help save lives, view IGT’s Policy Brief here.
Second, increasing racial and ethnic representation in clinical trials of new treatments is essential to ensure treatments will work for diverse communities. This has been a significant area of focus for biotechnology and pharmaceutical companies, including IGT Corporate Advisory Council members, who lead the lion’s share of research into new treatments. IGT is also proud to partner with institutions like Howard University who is prioritizing diversity in clinical trials, particularly for gene therapies.
Third, it is essential that we address the discriminatory issues inherent in certain health economics metrics, such as the quality adjusted life year (QALY), which devalues the lives of disabled people and racial and ethnic minorities. QALYs distort the value of treatments to patients and, in turn, provide justification for insurers to restrict or deny coverage – even for life saving therapies. In one recent example, the QALY was used to evaluate new treatment for sickle cell disease, an inherited red blood cell disorder that affects 100,000 people in this country, most of whom are Black. As a result of the analysis, insurers were told that the new treatments were not “cost effective” despite the clear positive impact on patients’ disease. You can read one patient advocate’s take on the discriminatory nature of the QALY here.
As part of IGT’s recognition of Minority Health Month, we are sponsoring a virtual event with Axios where experts on this issue will unpack racial divides in health access to new treatments. We hope you will join us for this important conversation. You can register here.
The Honorable Donna M. Christensen is the Chair of the IGT Scientific, Academic and Medical Council. Donna retired from the U S House of Representatives in 2015 where she served nine terms (18 years). She is the first female physician to serve as a Member in the history of the U.S Congress. In the 111th, 112th and 113th Congress, Donna served on the Committee on Energy and Commerce. Among other subcommittee assignments, she served on its Subcommittee on Health during healthcare reform. She also served on Committee on Homeland Security, the Committee on Natural Resources, and the Committee on Small Business. Donna chaired the Congressional Black Caucus’ Health Braintrust for 16 years. She practiced family medicine and served in several public health administrative positions prior to her election to Congress in 1996. She recently established the Christensen Institute for Community Health and Empowerment. Donna is the recipient of several honorary degrees and awards. She sits on several other boards and serves as a public health