What We Learned at RARE Health Equity Summit

A couple of weeks after Health Equity Summit, we are still hearing from those who spoke, attended and contributed to the summit. The Global Genes staff collected a few of the gems that were heard during sessions and keynotes. Do you have some of your own? Please share!

Top 10 Things That We Learned at RARE Health Equity Summit

1. There is inherent historical distrust that communities of color have had with the health system. It comes back to an education perspective and the technology being put forth that contribute. – Sandra Retzky, DO, JD, MPH, The Diversity of Diversity

2. There are a number of ways to overcome underrepresentation: making sure your study materials are translated, every physician has cultural competency training, use of non-traditional clinical sites and decentralized trials, support for participation. Some of the tactics are so well known, my perspective is that the barrier is in implementing them, knowing who to work with to implement them well. – Deanna Portero, Management Analyst [C], Division of Rare Diseases Research Innovation, National Center for Advancing Translational Sciences, Underrepresentation in Rare Disease Research – Driving Promise to Practice Health Equity

3. The key to overcoming barriers in our work is one thing – empathy. We’re not talking about empathizing with the people you serve, that’s easy, or the people you work with. How do we empathize with people in spaces and places we do not occupy? How do we use empathy to understand their position and then get them to understand our position. – Jevon Gibson, CEO, Fulton-DeKalb Hospital Authority, Friday morning welcome

4. We have to have the intention of increasing the diversity of our work force. I never heard of genetic counseling, or genetics or that a tangible career path is in it. In the K-12 timeframe, particularly in high school, we need to let people know this career exists. – Barbara Harrison, MS, CGC, Genetic Counselor and Assistant Professor, Howard University, Addressing Bias and Barriers to Genetic Testing for Underrepresented Populations

5. If we ask ourselves, “What is the why behind what we are doing?” it will help us engage individuals and address the major barrier of distrust. If we make stakeholders see a why and believe in your why, they will work alongside you. – Veronica Ajewole, PharmD, BCOP, Assistant Professor of Pharmacy Practice, College of Pharmacy and Health Sciences, Texas Southern University, Underrepresentation in Rare Disease Research – Driving Promise to Practice Health Equity

6. It’s important to partner with the patient and accept that cultural beliefs are deep rooted and we need to talk to our patients at that level. Many times we discuss the science, but forget social science. We need to ask what do they believe and what are they doing. Initially they will not open up because of fear of biases. It’s only when you partner with them that you can educate them and dispel myths and misconceptions. – Charles Hammond, MD, MPhil, FWACP, FGCP, Consultant Pediatric Neurologist, Komfo Anokye Teaching Hospital, Senior Lecturer, School of Medicine and Dentistry, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana, Keynote Address: Removing the Hurdles in the Clinical Care of Rare Diseases in Low-resource Settings

7. There’s an inherent sense of trauma. Having to fix trust is difficult, you have to rebuild trust. You have to start over. – Sarita Edwards, BHSc, CEO and President, E. WE Foundation, Effective Communication with Patient Partners

8. Whenever we fund trials, we make sure those community centers are funded as well. We have to be able to give access to rural communities, to the people who don’t have hours to take off, so the providers should come to them. – Ebony Madden, MS, PhD, Program Director, Training, Diversity and Health Equity Office, National Human Genome Research Institute, Addressing Bias and Barriers to Genetic Testing for Underrepresented Populations

9. It isn’t about lack of interest, it is a lack of knowledge. – Vicky Arteaga, MBA, Treasurer / Latin America Director, SynGAP Research Fund, Global Equity & Inclusion: Access to Diagnostic Tools & Expertise, Clinical Trials, and Treatments

10. Newborn screening is the biggest cost saver. There is an economic value in this. – Durhane Wong-Rieger, PhD, President and CEO, Canadian Organization for Rare Disorders, Global Equity & Inclusion: Access to Diagnostic Tools & Expertise, Clinical Trials, and Treatments

Here are some other gems that we heard during the keynotes, sessions, and welcome and closing remarks:

The Diversity of Diversity

It’s incredibly important to start with the intent. For all of us working in rare disease we have to have the intent that no patient is left behind. We have to suspend what we know about the diagnostic odyssey and the barriers we have – Eric Dube, PhD

Many of us in industry have the experience of having a rare disease but we don’t know the experience of underserved communities. – Eric Dube, PhD

During the pandemic I had this experience with the Covid vaccine. Being experimented on is extremely frightening for people. As I got to know my neighbors, my family members, I found it was important to explain the technology, why it’s different than other vaccines. I did this 50-60 times in my neighborhood with my older diverse neighbors who had this distrust of the healthcare system…It starts with us as leaders in the field beating the pavement. – RA Session II

When it comes to trust, some of these trials are very complicated, where multiple products are being given. One of the things as a reviewer I would do personally is talk to the sponsor about engaging with that individual’s family healthcare practitioner so there would be some continuity between the HCP and sponsors. It’s sometimes true that once the trial is over they stop engaging. Some of the trails are for gene therapy products that require very long follow up. – Sandra Retzky, DO, JD, MPH

Engaging with the family, understanding the family history and how it’s impacted the family and the disease state from a genetic counseling perspective, but also providing the tools to help them make an important decision, such as participate in clinical trials, seek a diagnosis, or knowing what to expect in the course of the disease. – RA Session II

You have to go to where the patients are, you can’t expect them to come to you. You ask them questions, ask them what’s important and then you listen and incorporate it into what you are doing. – RA Session II

It’s not just about the data. Stories can be phenomenally powerful, telling the story of what the barriers are and what we can do to overcome them. Our staff watches the videos, they’re powerful. The more you can tell these stories, the more impactful you will be in rare diseases. – Eric Dube

Addressing Bias and Barriers to Genetic Testing for Underrepresented Populations

Those initial studies were done on a primarily European population. Now we’ve gotten to a point of wanting to apply these studies to all populations. But we’re crippled because of those initial studies. – Barbara Harrison, MS, CGC, Genetic Counselor and Assistant Professor, Howard University

When we distribute the information, we need to have cognizance of our own ignorance, that we don’t know everything. We need to listen before we deliver guidance. – Zhanzhi (Mike) Hu, PhD, CoFounder and President, Project GUARDIAN

Parents might have hesitation in being tested because at least one will think, “I don’t want to know because if it came from me, I will feel so guilty.” We need to know there is no such thing as a perfect genome. In genetics it’s the root of the problem, but it’s not because you pass it on, because we all do. – Zhanzhi (Mike) Hu, PhD, CoFounder and President, Project GUARDIAN

There are still judgments being made in carrier screening. What’s normal? What’s a severe disability? We need to check ourselves, the language we are using and the intent behind the research, because people can see through it. If they think it’s going to be used against my community, or to eradicate my community, we’re not going to bring them to the table. – Barbara Harrison, MS, CGC, Genetic Counselor and Assistant Professor, Howard University

Experience Matters: The Importance of Rare Disease Education in Medicine

One thing I was taught as a medical student was to listen especially to parents because invariably they are right. If they say something is wrong, it’s your obligation to find out why. – Umar Rehman, Medical Student, Rosalind Franklin University of Medicine & Science

Medical students want to know what’s on the exam. They won’t be tested on rare diseases but it’s important that they know they exist. Putting a face on the disease is important. If I know how long it took to be diagnosed or how many times they went to the ER, it would make a difference. What’s important is to have an approach to rare diseases rather than forcing you to memorize them all. – Dr. Michael Gambello

Effective Communication with Patient Partners

With minority communities, there is already a level of mistrust. Find means to educate the community to create that level of trust. – Analy Navarro, Founder and President, BA HERO

Global Equity & Inclusion: Access to Diagnostic Tools & Expertise, Clinical Trials, and Treatments

It is important to bring stakeholders together. If organizations came together to bring accessibility to communities, we would be able to get into clinical trials and get better research for better opportunities. – Arteaga, MBA, Treasurer / Latin America Director, SynGAP Research Fund

Policy: To Address Important Rare Disease and Health Equity Issues

When you talk about equity, it’s not the same as equality. Equity is literally the philosophy of to each according to their need. Equality is everyone gets the same thing. – Mia Keeys, Director of Federal Affairs, Hologic, Inc.

Underrepresentation will only stop if the sponsors are told, “we are stopping your trial unless you enroll a population representative of the disease.” – Anne Quinn-Young, MPH, Chief Mission Officer, Multiple Myeloma Research Foundation