Today we're thrilled to showcase a longtime friend within the Diabetes Online Community who's been raising her voice for years to help others living with diabetes, especially those struggling with eating disorders. She's one of our 2017 DiabetesMine Patient Voices Scholarship Contest winners.
Please say hello to Asha Brown in Minneapolis, MN, a thirty-something whom many in our D-Community may recognize as the founder and executive director of the non-profit We Are Diabetes that does incredible work helping PWDs with eating disorders. We've featured her before at the 'Mine, sharing the details of what triggered her own eating disorder and how she pulled out of it -- and now we're thrilled to have Asha as part of the crew of empowered patients raising their voices on innovation.
An Interview with Asha Brown
DM) Asha, can you please start by sharing your diagnosis story?
AB) I was diagnosed when I was 5 years old. It was sometime close to Halloween (in roughly the early 90s), but I can’t remember the exact date and neither can my parents.
Actually my story is less dramatic than most, probably because my dad was diagnosed with T1D about two decades earlier. So when I started wolfing down huge triple-decker peanut butter and banana sandwiches for my bedtime “snack” and getting up to pee every hour at night, he immediately knew what was going on. I remember being in a doctor's office with him (this doctor was actually his endocrinologist) and I remember my dad being sad, which I found strange at the time because my dad is usually a very upbeat person. I have no memory of their conversation but once we got home my dad said I had to take a shot. I wasn't thrilled about this, but my dad was and still is my ultimate hero. I knew that he took shots so doing something that HE did everyday made me feel special.
After that diabetes was just part of my life. My dad took care of my diabetes for the first few years, but took every opportunity to teach me how to be independent with it as soon as I was at the age where I was being invited to sleepovers and going on class field trips. So I had a sort of “seamless” transition from being a “normal” kid, to a kid with type 1 diabetes.
How old was your dad when he was diagnosed?
My dad was 20 when he was diagnosed with T1D in 1970, and his story is pretty interesting. He was very involved in protesting the war in Vietnam, but ended up being drafted! His family was horrified and my grandma said that she remembers “praying to the universe” while driving home one night that something would happen to prevent my dad from going to war. When my dad showed up for his physical he was told that his blood sugar was over 800 mg/dL and he was type 1 diabetic! He was told to go make an appointment with an endocrinologist immediately.
Did you and your dad talk about diabetes a lot back then?
Talking about diabetes was as normal as putting your socks on before you put on your shoes! My dad is the most important person in my life. I was a “daddy’s girl” from the moment I was born. Once I was diagnosed with T1D, I actually felt proud to be more “like my dad.” He taught me how to be independent with my T1D management, and provided a perfect example of how to make diabetes work with your life vs. living your life for your diabetes.
What was your personal experience with an eating disorder, and did you share it with your dad?
From age 14 to 24, I struggled with an eating disorder known as “diabulimia.” By age 16 I wasn't talking about my diabetes management with anyone, but I was especially avoidant of talking about my diabetes with my dad; I was so ashamed by what I was doing and I felt like I had failed him.
One of the most pivotal moments of my life (and my eating disorder recovery) was when I finally told my dad that I had been purposefully skipping my insulin for years. He was so kind and understanding. He actually drove me to my eating disorder intake assessment appointment. If I hadn't had him there with me that day for support, I doubt I would have made it through those doors.
Later you started the We Are Diabetes group – can you share more about that?
We Are Diabetes (WAD) is a nonprofit organization primarily devoted to supporting type 1 diabetics who struggle with eating disorders. Commonly referred to by the acronym ED-DMT1, WAD offers one-on-one peer mentoring and referrals to credible providers and treatment centers across the U.S. We at WAD offer unique resources designed specifically for the ED-DMT1 population, and monthly online support groups.
We Are Diabetes also advocates for empowered living with type 1 diabetes. The daily challenges of existing with this disease, as well as the emotional and financial toll it takes, can oftentimes result in a sense of defeat or isolation. We help those who feel alone in their chronic illness find hope and courage to live healthier and happier lives!
Very cool… what’s next for the organization?
I have A LOT of big plans for WAD brewing right now, that I'm not able to talk about publicly just yet. For those who want to stay updated on our future projects I would highly recommend signing up for our newsletter, and following our social media channels on Twitter and Facebook.
Aside from WAD, what other diabetes activities and advocacy have you been involved with?
I especially support the efforts of The Diabetes Patient Advocacy Coalition (DPAC), which is one of the best organizations to get involved with when you actually want to DO something re: the current healthcare coverage catastrophe, as well as patient safety and access, but are unsure of how to start.
I spend the other 80% of my advocacy efforts spreading awareness about the prevalence and dangers of ED-DMT1 (dual diagnosis of type one diabetes and an eating disorder).
More doctors and educators do seem to be talking Quality of Life, eating and mental health issues lately... what do you think about all of that?
I think it’s a very good start in the right direction. However it’s not enough to start talking about it. Action must be taken in order for us to see a true change. The current DSME curriculum needs to expand its content to focus much more on mental health screening for people living with diabetes. There are still thousands of PWDS who are “falling through the cracks” of our healthcare system and being written off as “non-compliant” when they may actually be struggling with depression, anxiety, or eating disorder (or a combination of these conditions).
Meanwhile, tools and care have improved over the years. How would you describe the changes you’ve seen yourself?
I’ve had T1D for quite some time, so I’ve been around to see the first wave of pumps come out, as well as the first wave of CGMs. Although I absolutely love my Dexcom and can appreciate how much better my life is with the use of a continuous glucose monitor. I’m very aware of the fact that I’m highly privileged to be able to have access to it. Many of my clients can’t afford a pump or a CGM. Their insurance either won't cover it, or still require a ridiculously high out-of-pocket expense.
Although there has been some movement in the last year with better access (such as getting Medicare to approve the use of CGMs) the process is still extremely difficult and frustrating. I’m disappointed in the fact that yes, we have some amazing technology to live a better quality of life with this damn disease, but many PWDs never get to experience those improvements.
What gets you most excited or disappoints you most as far as diabetes innovation?
I think the biggest challenge right now is access. Some PWDs can't afford it at all, while others have insurance coverage that limits them to using only a certain brand of pump or CGM. These needless limitations prevent both the innovators and the patient from being able to truly appreciate the benefits of the diabetes tech we have available, and the diabetes tech to come.
What do you think might be the right next steps to address these big challenges in diabetes?
The major healthcare issue is potentially losing access to health insurance. I have many heartfelt words to describe how incredulous I am that our current leaders in government seem to have little concern for those who live with diabetes and other conditions. I also have many creative ideas for how I would personally love to solve this issue, but in order to prevent an FBI agent from showing up at my door with an arrest warrant, I’m going to keep those creative ideas to myself for now.
The most important thing for us all to focus on right now is getting our voice heard. We’re not going to win this battle if we all just “share” something about it on Facebook or “retweet” stuff. That just isn't enough anymore. Now, it's about advocating more directly. We must all call senators, join efforts (such as DPAC) and do everything we can to raise our collective diabetes voices. Together, we can make a difference!
Thanks for sharing, Asha. We're very glad to have you as part of the Diabetes Community and look forward to hearing your voice as these important conversations continue.