Feminist Activist Feature: Emmabella Rudd
FEMINIST sat down with activist and aspiring lawyer Emmabella Rudd to learn more about her mission to improve diabetes health care.
Emmabella Rudd is a Type 1 diabetes activist and advocate who is the founder of Emmabella’s Believers, a team of supporters and advocates who are dedicated to capping insulin prices and ultimately treating, preventing, and curing Type 1 Diabetes. As an aspiring lawyer, she plans to dedicate her career to increasing insulin accessibility, supporting diabetes research, fixing the U.S. health care system.
www.emmabellarudd.com www.t1international.org www.emmabellasbelievers.org
How have your lived experiences shaped your approach toward Type 1 Diabetes activism? AND 2. Throughout your activism journey, do many people have misconceptions about insulin access or overall access to healthcare? If so, in what ways do you combat them?
ER: Type 1 Diabetes is a chronic illness where the body suddenly attacks the pancreas, killing insulin-producing cells, known as beta cells. This leaves a person insulin dependent for life. A person can be diagnosed with T1D at any age. According to the Americans with Disabilities Act, diabetes is considered a disability. 1.45 million people live with T1D in the United States, and 8.75 million live with T1D globally.
Only 10% of people living with type 1 diabetes have a family history of the disease, and due to the symptoms' subtle nature, the signs are often overlooked. This often leads to type 1 diabetes being misdiagnosed. When I was diagnosed, my blood sugar was over 800—the doctors told my parents that if I would have not been diagnosed that day, I would have not made it through the night. I was fortunate to have been diagnosed just in time, but that is not the case for all. After hearing the experiences of others within the diabetes community that had lost their loved ones due to misdiagnosis, I wrote a bill to encourage diabetes screening in the state of Florida when I was 17 years old. This bill would later be sponsored in the Florida legislature.
I have lived with type 1 diabetes since the age of 5, and as I adjusted to my new normal, I learned quickly that this chronic disease is very misunderstood. When I first moved to Florida, the school board did not allow me to carry my life-saving medication, Glucagon. My family and I had to advocate to appeal this policy, and we were successful. In elementary school, my classmates would make comments about my disease, but I would never hesitate to educate them on my chronic illness. With my experience, in the fourth grade, I decided to organize and give an educational presentation on diabetes to my school. I learned that education and storytelling in the health sphere made a huge impact, as suddenly, the people that I was surrounded with understood the disease. After expanding my presentations to other schools in my area, one student identified the symptoms of type 1 diabetes in themselves and was able to get diagnosed before developing diabetic ketoacidosis and other life-threatening health complications.
Before attending middle school, I had expressed to the school administration that I wanted to conduct the same presentation on diabetes. On the first day of middle school, I was pulled to the side by the school counselor, who asked me if doing this presentation was a good idea. She asked me, “Do you really want to be known as the girl with diabetes?” This comment originally deterred me from my work, but through self-reflection, I realized that my passion for education and advocacy for diabetes meant more to me than the perceptions and stereotypes that may prevail. Later that school year, I did that educational presentation. I am proud to be the girl with diabetes.
Educating, advocacy, and policy reform on diabetes and public health would become my passion. Later I would aspire to do a TED Talk myself, and it to me, has been my greatest accomplishment to date.
When I was diagnosed with T1D, my family and I got involved with an organization called JDRF. Originally, we fundraised for diabetes research and technology advancements. I have raised over $375,000 to this day. At the age of 11, I began advocating to my representatives at Capitol Hill. Since then, I meet with them annually to urge them to push legislation to support research, medical supply access and affordability, and insulin price regulation. My work has also encompassed working on passing an insulin copay cap in Florida, expanding access to diabetes supplies under Medicare, advocating for Health and Human Service Executive Order reform, advocating for Inflation Reduction Act policy, and advocating for patent reform within the United States Patent Trademark Office.
Last April, a Florida Congressman (Matt Gaetz) expressed that “The price of insulin increases as waistlines increase.” With these words, the Congressman publicly opposed the insulin cap that was up for house vote in April of 2022. Leading many to believe that reliance on insulin was “controllable.” After the former President claimed that they made “insulin so cheap it’s like water” in 2020, many believed that the American insulin crisis was solved. These statements are the epitome of misconceptions surrounding diabetes–millions of Americans with type 1 and type 2 diabetes rely on insulin to survive, and still, one in four rations the drug. This rhetoric shows the ignorance of some of our nation’s decision makers that have contributed to misconceptions of diabetes in society–further contributing to a negative diabetes stigma and an overall reduction of the validity of our experiences. With this in mind, it inspires me to keep pushing to advocate and educate. At the end of the day–we as patients are more resilient than the ignorance of lawmakers and the greed of pharmaceutical leaders–we will win this fight.
In May of 2023, the three main insulin manufacturers publicly announced that they would be capping the price of a select number of their insulins. While the world gathered around to applaud the move by Eli Lilly, Novo Nordisk, and Sanofi to cap insulin prices, I tried to enjoy this advocacy win—as I’ve been advocating for insulin price regulation for many years now. However, I remained skeptical in regard to its practicality. Was it really going to be accessible?
This summer, I aided in conducting survey research with T1International to determine if one of these newly capped insulins, Lispro, was going to be accessible or affordable. Our findings show that to most Americans, Lispro is still not accessible or affordable, despite Eli Lilly’s claims. Our findings were published alongside Senator Elizabeth Warren.
Do you feel that access to proper medication is connected to liberation for all? If so, how so?
I believe that access to medication and the medication that is right for you is connected to liberation for all, as I believe health is a human right. In my case, if I do not have access to insulin and the right insulin, I cannot survive. On the same note, individuals that do not have access to the medication they need to survive or to have an adequate quality of life, do not have the adequate health status and liberty as those who are able-bodied.
The same concept applies to accommodations that an individual living with a disability may receive within a school, the workplace, transportation, and other day-to-day operations. Without adequate accommodations, there is no equity–then liberation for all is impossible. Adequate accommodations are vital for obtaining an equitable education. People who live with disabilities and chronic diseases deserve access to accommodations to have an equal opportunity to show up, perform, and have access to the same extent as those who are able-bodied.
How has your activism changed/been impacted by the pandemic?
ER: In the midst of spring 2020, I was working on pushing an insulin cap at the Florida level through in-person advocacy. After being sent home due to the outbreak, much of my advocacy work moved online. Additionally, many events I had aided in organizing had to be canceled or moved online. However, participation was high due to community effort, so despite the changes in plans–there were still high participation rates. From this moment forward, so much advocacy was more accessible. Additionally, due to the nature of the increased focus on health-related topics due to the pandemic, I was motivated by the idea that public health and health policy would come into public focus–which I believe it has.
In April of 2023, I became the lead of the Florida #insulin4all movement. With this role being fully remote due to the pandemic, I wanted to bring the community together. I began organizing online advocacy workshops, holding diabetes community connection events, and creating policy initiatives and plans for the next coming session.
Unfortunately due to the nature of the pandemic, my ability to meet in person with legislators was postponed, and then ultimately moved to zoom for many years. While it was more accessible, I do worry it may have limited the impact of my advocacy work as it pertains to impact, as the policymakers were not meeting myself and other advocates in person for a human-to-human experience.
From your perspective, how are chronic health conditions, access to healthcare, and intersectional feminism intertwined?
ER: Within the chronic health community, there is a shared experience of overcoming adversity. Accessing healthcare for those within this community is difficult. For example, people living with diabetes can spend hours on phone calls with insurance companies explaining why they need this medication or procedure in order to live or reach quality of life. Additionally, some days, diabetics have to fight to keep themselves alive as we battle severely low blood sugars, even while we sleep. This can happen any day, and in our society, it is expected we still show up to school and work as our best selves. It can be exhausting and a full-time job–but we have no choice if we want to stay alive.
Overcoming and dealing with adversity is a strong theme that runs through chronic health conditions, accessing health care, and intersectional feminism. Intersectional feminism accounts for chronic health conditions as an intersecting factor of oppression, intertwining the two.
Another way these aspects combine is the need for a human-centered approach. In all forms, those affected need to be at the center of the conversation in order to make sustainable change and reform. However, in all of these aspects, it operates the opposite in the United States. Men are making decisions and creating legislation on women’s bodily autonomy and health care. The rate of BIPOC maternal mortality in the United States continues to grow, year after year—yet the people least affected by these health disparities or do not lack access to healthcare oversee creating health policy. The lack of grassroots integration into policy decisions within chronic health conditions, access to healthcare, and intersectional feminism is showing in the United States through our health outcomes. The solution in this is intersectional and it must be approached this way.
Does your activism have an international scope? How do you advocate for others with diabetes on a global stage?
While my focus is on the price of insulin in the United States as well as advancements within diabetes supply access and research, the organizations I work with closely exist on the international level. Much of my advocacy contributes to an international impact, whether it is diabetes education, garnering attention on insulin accessibility, or on improving the lives of people living with diabetes worldwide due to advancements in technology.
My advocacy on media platforms intends to have a global approach, as cultural and social impacts exist for those living with type 1 or type 2 diabetes. With my work in diabetes education and advocacy through social media and other outlets, I hope that my work is aiding in eliminating the stigma surrounding diabetes on an international level.
What advice would you give to others looking to make an impact in their communities?
Through my experience, I believe that it is essential to find a non-profit or community to work with to identify a public issue, garner support, gather a community, and show up to make an impact. Without support from the diabetes community, I would not be where I am today.
It is also vital to understand the concept of Saviorism. Saviorism refers to the intention and attitude of individuals who engage in service that are not open to guidance from those they want to “help.” This is also known as white knight syndrome or the white savior complex. As you start and continue to make an impact in your community, actively have an understanding of this concept, educate others you serve with, and reflect on this concept to ensure your service approach is not saviorist.
If you intend to make an impact in your community, you must do so with the intent to “fuel the fire” of the community impacted. Listen to the communities impacted (even if you belong to the community!) and work with data to drive your advocacy work.
What do you hope to achieve through your activism work? What does the future of diabetes education and healthcare access look like to you?
I hope to contribute to health equity in making insulin more affordable in the United States–ultimately by continuing to advocate for an insulin cap to pass through Congress to ensure that no one should have to ration their insulin in the coined “wealthiest country in the world.” Looking forward, I also would like to continue to work on the affordability of medical devices and supplies for people living with diabetes and other diseases. While new, ground-breaking devices have been instrumental in improving the lives of people with diabetes, those living with disabilities, and chronic diseases, they are still widely unaffordable due to their high costs. I also am particularly interested in the impact on public health and prescription affordability by the 2012 Supreme Court decision, “Citizens United v. FEC,” and hope to one day play a role in overturning this decision.
Tackling the U.S. healthcare in its access and affordability issues is a passion of mine. I hope to work in this area as a Public Health litigation attorney to further instill health as a human right in the U.S. I hope to attend law school in the coming years to contribute to healthcare reform. Additionally, as a public health professional, I am extremely passionate about health literacy and self-advocacy. I hope to push for policies and programs in the future to expand public health education at primary and secondary school levels. I also plan to run for office to push legislative efforts for my community and prioritize health in all policies in the U.S.
What does intersectional feminism mean to you?
Intersectional feminism to me, is the idea that without addressing all intersecting factors of oppression, such as race, gender, class, sexual orientation or identity, and ability, we cannot achieve gender equity. It also means, on an individual level, if we do not believe that oppression is interconnected with all identities and believe that working towards eliminating oppression in all forms, we cannot be true feminists. Intersectional feminism also allows us to reflect on our personal privilege. This means making space for others in order to make an equitable society for all to thrive. By using the foundations of intersectional feminism within our advocacy and policy-making, we ensure all identities are considered and accounted for in decision-making.
Thank you again! Feel free to include any extra info you would want to be shared!
As I worked at the White House this past year under the Vice President, I was able to speak with her directly about the work we still must do for insulin prices!
I was at the Senate Testimony with the “big three” insulin manufacturers on May 10, 2023.
Just graduated from Georgetown University with my Master’s of Science in Health and the Public Interest.
Working for Booz Allen Hamilton as a consultant in health policy. I am currently working for Centers for Medicare and Medicaid Services.
www.emmabellarudd.com www.t1international.org www.emmabellasbelievers.org
