Perspective on Addressing the underserved Patient
08 NOV 2021
Created in 2019 by EMD Serono’s Neurology & Immunology franchise, I’M IN is the first dedicated diversity, equity, and inclusion program focusing on the customer launched by a biopharmaceutical company.
The I’M IN program hosts events, including those in the multiple sclerosis (MS) space, to bring stakeholders together to improve shared understanding, generate ideas, and explore possible solutions.
One particular area of focus is addressing the needs of underserved patient populations – those with a lack of access to specialized medicine - whether due to socioeconomic or geographical reasons.
Penny Pennington, Director of Development and Program Management at the University of Buffalo Jacobs MS Center for Treatment and Research, discusses her experiences in educating and supporting economically disadvantaged people living with MS.
Since I was diagnosed with MS in the late 1970s, my work in MS research and legislation has aligned with helping underserved patient populations. Most recently, Dr. Bianca Weinstock-Guttman, the director of the Jacobs MS Center, asked me to create a comprehensive MS disease awareness and management program for underserved patients. Through this program, I am focusing on three large urban centers that treat 63,000 economically disadvantaged patients, who are mostly from minority backgrounds.
Throughout my experiences, I have learned the most from speaking directly with these patients.
I once interviewed an African American patient in her early 40s, who shared how she visited several medical practices over two years looking to receive a diagnosis to address multiple symptoms, including dizziness. In a couple of these visits, instead of diagnosing her, the physicians asked her questions about any potential drug use. Eventually she was able to get a referral to a neurologist, who through appropriate testing ultimately diagnosed her with MS.
After she shared this experience with me, she wondered if she would have been diagnosed sooner if she were white. This opened my eyes to the inequities faced by so many underserved patients who unfortunately often have similar experiences. It moved it beyond an academic issue and made it real.
The programs I oversee are multifaceted and address many important considerations for those living with MS. One area is lifestyle intervention programs, including those focusing on exercise and diet, but customized to a patient population that may not have access to gyms or abundant grocery stores nearby. Data exists on the benefits these factors can have on patients and their wellness, regardless of their socioeconomic status.
Research – Empowering a Mindset
Another area is research - including everything from surveys to clinical trials. There is a sense of empowerment in using these studies to find ways to treat each of our patients and encourage them to have the mindset of “I’m not an MS victim, I’m an MS warrior.” Encouraging participation from those who may traditionally be left out of research enhances the value the data provides, so that we can better appreciate the results from any intervention, be it a drug or some type of other intervention under investigation, in a broader patient population.
Having more diversity in clinical trials can uncover results that can help other underserved patients and hopefully encourage them to participate in similar trials.
I often wonder about the requirements to participate in federally-funded studies, such as from the NIH or the Congressionally-directed Medical Research Program (CDMRP), and how they can change to meet the needs of underserved patients. These patients may not meet the strict requirements to participate or are hesitant to join these trials.
Making stronger efforts to include people from minority and economically disadvantaged backgrounds can help improve the findings to recommend the right treatments.
What does success look like?
Overall, I believe there are two main themes to remember for how we can successfully address underserved patients:
- One is to remind them that knowledge is power. There can be a lot of misleading information out there, so it is important to provide guidance.
- The second is to remind patients that their lifestyle choices, including their exercise and diet, influence their treatment journey.
The opinions represented here are not indicative of the opinions of EMD Serono, Inc.
- US-NONNI-00810 November 2021