With so many in our diabetes community struggling to afford just the basics they need to stay alive, we depend more than ever on patient activists. One mover-and-shaker is longtime type 1 Gail deVore in Denver, Colorado.
Diagnosed as a kid in the early 70s, Gail is now a leader in everything from the #WeAreNotWaiting tech space where she serves on the Nightscout Foundation board, to testifying before Congress on insulin pricing, helping craft a state law for emergency prescription refills. She recently appeared in an episode of HBO’s VICE News to spread the word on our access and affordability challenges. And that’s just scratching the surface of all that Gail has seen and done in her years living with T1D.
Please welcome Gail as she shares her personal story and advocacy efforts with ‘Mine readers today:
When the price of insulin started rising more than I had ever experienced, I knew that I could not be silent. I cannot sit still while people are dying because they cannot afford insulin.
The need for this life-sustaining drug has touched my life since I was a child; in many ways, the story of my D-life tracks the evolution of modern diabetes care and technology.
The Dark Ages of Diabetes
I was diagnosed with type 1 diabetes at 11 years old, on Valentine’s Day in 1972. At the time, it wasn’t known as T1D but rather juvenile or childhood diabetes. There was no one else in the family with T1D at the time of my diagnosis, though a first cousin now has identical twins who were diagnosed about 15 years after me.
At the time of my diagnosis, insulin was an over-the-counter medication that my parents picked up at the pharmacy whenever it was needed. It cost us all of $1.49 per bottle. I only took the amount of insulin my doctor advised. I was on a strict-ish diet of supposedly no sugar. That is how I survived every day.
The only test available for home-use to test for glucose levels was Clinitest. We combined 5 drops of urine and 10 drops of water into a test tube, then added the Clinitest tablet, waited for it to boil, shook it slightly, and compared the color against the chart. As far as I knew, the only color that Clinitest was able to report was ORANGE – the color of 4+ sugar in my urine. My mom always knew when I was not using urine to test when I told her the color was navy blue – the color of no sugar. It was a rudimentary, meaningless test. We had no way to know if the amount of insulin we took was effective; we had no idea about our blood sugar. A1C testing did not exist then.
The only blood glucose testing we had available was to go to the doctor, have a vial of blood sucked out of my arm, then wait for several days to get the results from the lab to tell me what my BG (blood glucose) was on the day of the draw, about five days previously. Useless.
This was effectively the same as driving while looking in the rearview mirror and blindfolded. In reality, we were living in the dark ages.
Somehow, my parents survived my horrible hormonal teen years. It is likely that the summer diabetes camps I attended and the support system through my doctor’s team helped me get through it all. In fact, I’m still in touch with a few of my camp-mates and my former doctor and his wife. I attended Camp Hope in Kansas City for two or three years, before I became a teenager, and then I attended Camp Discovery in Wichita for three or four years after that. I didn’t stick around to be a counselor, as I spent the summer when I was 16 traveling with my high school choir. I stay in touch with several of those campers, and I wouldn’t trade those years at diabetes camp for anything – T1D is the norm there, and it’s unbelievable how amazing that sense of belonging can be for us.
Through all of those early years, insulin was affordable. By the time I graduated with my undergraduate degree in 1983, insulin was only about $20 a bottle and still did not require a prescription. And in 1983, I got my first at-home glucose meter that had to be calibrated before every test and the blood had to be rinsed off the test strip before sticking it in the suitcase of a meter. I don’t think I used it very often, but at least it was a tool that I didn’t have before then.
Getting Better Diabetes Technology
By 1985, insulin pump technology had graduated from backpack-sized to shoe-box-sized. I jumped in with both feet. My very first insulin pump was a Betatron II in ‘85. While it was part of the second generation of pumps, the infusion set needles were still being made with nickel alloy – which is now known as a highly allergic metal, especially in women.
The pump battery was a spiffy rechargeable unit that came with two batteries so one could be charged overnight while the pump kept running while sleeping. The only issue was that after a few months of the charging cycle, the batteries began to swell. We were not notified of that lovely feature. I couldn’t get the battery out of the pump without a screw driver to pry it out. Continuing to use the battery resulted in a very nasty exploding battery.
I used the Betatron II for a little more than two years through pre-pregnancy, pregnancy, and delivery of my son. Ultimately, I had to give it up due to the allergic response and the terrifying battery situation.
A couple of years later, I started using better pumps with better infusion sets (and better batteries). Looking back, I’m astounded at what I thought was “better.” Nothing about any of it was user-friendly, but it was better than nothing. I’ve now owned and used pumps made by Medtronic (four of them), Deltec, Dysetronic, Animas, and Tandem t:slim.
Through all those years, while insulin was affordable, I had to fight with insurance for coverage to prove necessity for each and every piece of equipment I needed to care for myself. I had to make friends with HR and insurance reps. I had to write letters to Congress-people. I had to write letters to the CEOs of device manufacturing companies. I had to find phone numbers of high-level executives of my insurance carrier and call them regularly to make sure I got what I needed.
I learned that it was to my advantage to know everyone and make sure they knew me.
When Diabetes Becomes Unaffordable
I first noticed the insulin pricing issue in 2001 when my co-pay went up to $80 or $100. I was shocked, but still too new to the entire “insulin is by prescription only” days to understand what was going on. It took me a little while (maybe a couple of years) to figure out the specific insurance contract specifications I needed to understand before accepting a job or when comparing insurance plans during benefit signup.
Making T1 the first priority as a single parent in a single-income household isn’t easy. I have no savings. No retirement. Nothing to show for a lifetime of working other than being healthy. After my divorce when our son was 7, my ex-husband moved away from Colorado and I raised our son by myself. He went to college 13 years ago, and I am re-married now for the past five years.
I now own an IT consulting company. But until I could insure myself, I could not quit my large company job. The only way to afford to do that was under the ACA (Colorado was an early adopter). I quit my corporate job in 2007 and haven’t looked back. Yes, I also manage political campaigns. That’s the magic of working for myself — I get to juggle everything into the middle of the night.
Becoming an Advocate
Without getting into my political beliefs here, I want to share that I have been involved in political campaigns for decades, starting in 1976 when my dad ran for office. Since then I’ve either been a generic volunteer or a campaign manager. It is exhausting and thankless, but incredibly gratifying when our candidates win. My specialty is raising money for the campaigns. I have a couple of requests waiting right now to help raise money for campaigns that start soon.
I’ve also been involved in various facets of the Diabetes Online Community (DOC) since around the beginning of Internet time. There was a group I participated in back in the mid-90s where we talked about the difficulties in getting prescriptions filled for equipment and about issues with being T1. I’ve also been a member of the Insulin-Pumpers.org community for a long time, meeting other T1s online and IRL as well as helping fundraise for the organization.
As to #WeAreNotWaiting and CGM in the Cloud, I wrote the original user documentation for installing Nightscout and was part of the original support team. I worked closely with James Wedding to form the foundation. I’m still the VP of Scholarship and in the midst of evaluating more than 100 applications for awards for the next school year.
Speaking Up and Networking!
Right now, insulin is so expensive that many patients and families are forced to make life-threatening decisions when trying to afford prescriptions. We have nowhere to turn, except to our government’s legislative bodies, to offer us relief.
Now is the time for us to speak up in order to get the attention of our legislators. Many states are making small steps in offering relief, but other states’ legislators do not understand the severity of the situation. Without our voices, we don’t stand a chance.
I have always felt an obligation to do what I can to make a difference.
After my diagnosis, the only diabetes-related organization was the American Diabetes Association in Wichita. I volunteered at different events, attended summer camp, and helped to organize and lead backpacking trips to Colorado for teens with diabetes.
When I was a senior in college, I was the director of a lobbying group. My first job after graduation was as a community organizer. I’ve served on many different boards of directors and volunteered my time for many organizations. I am one of the original founding board members of The Nightscout Foundation, serve on the Board Development Committee of the JDRF Rocky Mountain Chapter, and sit on the Policy Committee of the Colorado Consumer Health Initiative. All of these organizations focus on making the world and our community a better place.
Through my affiliation with these organizations and through my willingness to speak out about my own situation with affording insulin, I have met with many legislators, testified in support of legislation in the Colorado State Capitol, and testified to the United States House Oversight and Investigations subcommittee of the Energy and Commerce Committee. I have been invited to speak at major healthcare conferences, have been interviewed by HBO’s Vice News, and lead workshops on telling our personal stories.
I have made friends with staff at the office of Rep. Diana DeGette (whose daughter has T1D). Their office invited me to testify last month. I keep in touch with them regularly and help serve as a resource on T1D, as needed. I’ve been working through them on another research project re: insulin that I’m not yet ready to discuss, but I can share that they have been incredibly supportive in helping me with this research.
I have done my homework. I have researched potential solutions. I have studied other states’ legislation. I have written proposals. I make sure I have the facts in order to represent to legislators the needs of those of us with diabetes.
In my fight for coverage with insurers I have never been denied ultimately. I’ve been doing this for 20+ years. At one point, I was given my own ombudsperson at United Healthcare to make sure I got what I needed. The names have faded from memory from those early days, but I do know that when I call whomever I need to resolve something, they know I mean business. I have a similar relationship now with my current insurance carrier. In fact, my current insurance is reviewing the contract with Edgepark Medical, because of constant and ridiculous service issues with that supply provider. Folks at the Barbara Davis Center for Diabetes have recently invited me to help them on a Medicaid coverage project. And my doctor has asked me to write a paper for scientific journal submission as well. I’m working on it.
Again, as I did years ago, I find myself reaching out, making phone calls, meeting people, shaking hands, introducing myself, offering counsel – making sure I know everyone and that they know who I am. Only now, I make sure they know who I represent: the voice of every person with diabetes who cannot afford insulin.
I cannot and will not be silent.
Thank you for sharing all you do to help this D-Community, Gail!