Anna Norton, CEO of DiabetesSisters, explains the importance of being an advocate for yourself and others in the fight for better and more equitable diabetes healthcare.
What inspired you to join DiabetesSisters? What was it like growing up as a woman living with diabetes?
I was diagnosed with Type 1 diabetes in August 1993, two weeks before I was to report to the University of Florida. Attending college was a tremendous accomplishment, as I would be the first in my family to leave home, live in a dormitory, and gain a four-year degree. Suddenly, I was faced with diabetes, and out of the realm of pediatric care. It was tumultuous, to say the least. My parents, immigrants from Cuba, urged me to stay home and attend community college, but with the encouragement of others, myself included, my parents ultimately drove me six hours from home, helped unload the car into my new residence, then took me to the school’s infirmary to find a doctor.
I was lucky that I had advocacy instilled in me from such a young age, because I knew which questions to ask my infirmary doctor. I delved deep into books and magazines to learn more about diabetes, as the care I received in the hospital at diagnosis was subpar and left me uneducated and unprepared for life with a chronic illness. I owe much of this gumption to my mom, who had spent countless hours with medical teams, as my sister was born with special needs and required constant medical care.
I learned to read medical documents early on, translating terms my mom couldn’t find in the Spanish-English dictionary. I didn’t realize the value of knowing how to advocate for myself until I received my own health diagnosis, and even then, it took me nearly seven years to fully grasp what it meant to have diabetes, to have to focus time and energy on blood sugar management, when all I wanted was to be a young woman who was enjoying college life and the excitement that is built around it.
DiabetesSisters came to be thanks to Brandy Barnes, a woman also living with diabetes, who saw a need for peer support while she was pregnant with her daughter. Brandy shared the isolation she felt during pregnancy and never wanted anyone to feel that way again. In 2008, she founded DiabetesSisters.org, a place for women living with any kind of diabetes to find support through one another. It didn’t take long for the organization to become a safe space for women of all ages to talk about their successes and challenges, to ask questions about treatment, and to find referrals for specialists. It was one of the first organizations of its kind to offer peer support, always without judgment or stigma.
Since then, it has grown to become a leading diabetes nonprofit in the United States, including a meetup program — PODS Meetups — that allows women to meet monthly to share their experiences with diabetes in a safe and judgment-free space. The meetups focus on a monthly topic, then leaders (also women living with diabetes) open the circle for discussion, sharing, and support. The program has grown significantly since it started in 2010, stretching from coast to coast, training leaders of all ages and types of diabetes. Once a year, we gather our leaders for a Leadership Institute, which allows for more conversation, learning, and sharing.
In 2016, we introduced an outreach program for underserved communities, specifically African American, Hispanic Latinas, and South Asian women. The program focuses on grassroots efforts to educate women in ways that they can prevent diabetes, better manage their health, and make attainable goals to live a healthier life. We have been able to focus on nutrition, stigma, treatment, and physical activity. We even now have gatherings in Spanish! As a Hispanic woman myself, I am immensely proud of this program and how it reaches women that could be my mother, aunts, cousins, and others in my extended family.
We also have a great website and online newsletter full of articles and links to resources. You can check us out at www.diabetessisters.org. If you are interested in coming to a meetup (they are all virtual for the time being) you can show your interest at https://diabetessisters.org/form/pods-interest-form.
How are women living with diabetes particularly vulnerable today, and what can we do to increase the standard of care for them? What are some of the gender disparities you’ve seen in diabetes care?
The situation for women has changed, especially since 1993 when I started on my personal diabetes journey. I think women of my generation and those before me have helped paved the way for my advocacy, for more communication in healthcare, and for a higher demand for proper diagnosis and treatment. The arrival of the Internet was an incredible time for me. There, I learned so much about diabetes, women’s health, and how to demand proper healthcare. Early bloggers paved the way for greater advocacy. And today, well, look at the way we use technology to affect change in women’s health. It’s incredible. Look at the campaigns for breast cancer and heart disease, to name a few. We know so much today — more than we ever have.
Of course, we still have work to accomplish. We need to focus on how women balance so many things. Often, we manage our personal lives, work lives, family life, and our physical and mental health. We need to train our medical teams to ask more questions about the way we live, about our hustle and bustle, and then have them offer ways to alleviate the stressors and find healthy ways to maintain proper mental health.
We need more research, studies, and learnings on women’s reproductive health. Oftentimes, we hear about diabetes and pregnancy, but it’s typically Type 1 diabetes. What about gestational diabetes? There is an increased possibility of developing Type 2 diabetes after gestational diabetes, and many women are unaware of this. Additionally, other life changes such as menopause are rarely discussed with healthcare providers and women with diabetes. This is such an extremely important life event for women living with diabetes. It’s uncharted territory for so many, and there are so few studies that we are relying on each other to learn how to manage this stage in life.
We also need to focus on women that come from minority groups — those who face language and cultural barriers, those who are underinsured, and those who are not insured at all. There is much work to be done.
A great starting point for women living with diabetes is learning to advocate for oneself, to demand the best possible healthcare and treatment options. We spend 99 percent of our time managing diabetes on our own; we deserve to be the center of our care. And at that, we need to be the lead in how that care should be administered, with healthcare teams circling us, not the other way around.
What are some of the barriers faced by women living with diabetes? In your opinion, what is the importance of reducing the healthcare costs associated with diabetes?
One of the biggest barriers for women living with diabetes and insulin use is lack of education. When our healthcare teams prescribe insulin we are too often not taught about titration, dosing, or hypoglycemia. I know I wasn’t taught those things when I was diagnosed and prescribed insulin, a hormone that I have injected into my body daily since 1993. When we fill our prescriptions, we may not receive guidance or education from our pharmacists. That’s a big challenge for anyone who uses insulin.
Regarding access, we live in a country where access is not necessarily a challenge. Most of the time, the best diabetes treatments are available to us. But affordability, that’s a different story. I know many personal stories of the struggle of being able to afford the newest and fastest insulins. It’s heartbreaking to hear these stories, and there needs to be a solution to this crisis. Diabetes has come a long way, but there is still so much work to be done in order to ensure we are living the healthiest and best lives we deserve.
I have been fortunate in my life to have private insurance, but even then, the cost of diabetes is daunting. That being said, I’ve learned to be my own advocate — to learn about my insurance coverage and choose the best plan for myself and my family, to learn about patient assistance programs and co-pay cards to better afford treatment, and to find alternative insulin therapies when I am unable to afford a different one while asking for guidance from my medical team. I am not saying that’s the ideal way, but it’s what I have been able to do to keep myself healthy, because I plan to live a long life.
What does health equity mean to you?
Health equity means that I have the right to be healthy, despite being a woman, a minority, or a person with diabetes. And as an advocate, it’s my responsibility to educate others so that they can make a difference in the healthcare they receive.
For women, this includes women’s health and pediatric health for our children. We must continue to demand access and affordability in our care, timely routine examinations, and answers to our health questions.
As underserved populations, we also need to demand care focused on our cultural needs. Oftentimes, we are grouped into mainstream health that doesn’t take into account our family history and genetics, our traditions around food, or our reliance on (and sometimes, mistrust of) medical professionals.
Additionally, finding peer support groups where women are not judged can be life-changing. Learning from others who share common ground has allowed me and the community which I serve to become empowered and demand better healthcare.
