JDRF Advocates help build and sustain critical support for type 1 diabetes (T1D) research funded by the Federal Government by raising awareness among Members of Congress of the financial, medical and emotional costs of the disease.  Gail deVore, a business woman and non-profit leader locally and T1D advocate and hero nationally, shares her story about why she chooses to advocate and be a part of JDRF and the Advocacy Mission.

Gail’s Story

During the 46 years since my diagnosis with Type 1 Diabetes, I have witnessed just about every change and improvement in the treatment of T1.

In 1972, an era that I refer to as the “dark ages,” it was routine to receive one shot per day of a slower acting insulin that peaked at about 6 hours and was gone by 12 hours. That left 12 hours without insulin. We did not have at-home blood sugar monitoring, but we did have the ability to test our urine for sugar. That definitely did not provide any information other than I was not getting enough insulin during the time it took for my bladder to fill.  How much insulin or food was a guessing game, at best. It took at least 2 days to get the results of a blood draw taken while seeing the doctor every few months.

My parents and I managed to survive puberty and the typical T1 rebellion. Actually, it was pretty much a miracle that they survived me at all.

By 1975 standard T1 treatment advanced to daily multiple injections. By 1982 I got my first blood glucose meter for home use. In 1985, I got my first insulin pump – a Betatron II that had a fixed basal rate of 1u/hour.

I am very fortunate that despite all that rudimentary level of care during my childhood, that I am healthy and have no complications.

Today, I have a CGM, use a hybrid closed loop insulin pump system that automatically adjusts basal delivery, sit on the board of the Nightscout Foundation in the pursuit of technology solutions for T1s, and I advocate for all people with T1 so that every one of us has access to tools that should be considered standard care.

Access to Insulin and Innovation

One of those very basic standards of care is insulin, the only medication that treats T1. It is widely known that in 1921 Drs. Banting and Best “discovered” insulin then sold their patents for $1 each to make sure it would always be available and accessible to us. For many years the price stayed affordable and accessible. In 1972, when I was diagnosed, insulin was $1.49 per bottle.

Since about 1995, faster acting insulin was produced, including Humalog and Novolog. I watched the price increase, despite the promise by the manufacturers that the cost would go down. The price rise was gradual at first: $25, then $30, then $50, then $80, then $125 per bottle. Today, the average retail price of a bottle of Novolog is about $330. It is what my pharmacy charges to anyone without insurance and to those with a high deductible plan

Over 46 years, almost 50% of the total cost of insulin was in the last 4 years. That Is absolutely unacceptable.

Many of us have the ability to stockpile our insulin and supplies. And we do that out of fear that a day might come when we run out of insulin and have no way to get another bottle. For most of us, that is highly unlikely, yet, this is the reality for many T1s in our city, state, and country.  I cannot understand how a medication that has been available for nearly 100 years is now priced out of reach for many. Even for those of us that have insurance, often, it is an out of pocket expense until we hit our deductible.

The basic life-saving and life-sustaining medication that we require is so expensive that many have to make adjustments to our household budgets to afford to stay alive. It is unacceptable for a family to have to decide if they pay the heating bill or buy insulin, to scrimp on every dose to make the bottle last until the prescription is available, to create a GoFundMe to afford our insulin. This is the reality for too many people with T1.

This is my passion – to make sure that every person with T1, no matter what our age, has access to insulin, no matter if we receive Medicaid, or Medicare, or have insurance, or have no insurance. It must be affordable.

Since this is what we rely upon to keep us healthy; every diabetic should have access to insulin to stay alive and healthy. Anything less is a travesty and a fundamental breakdown of the wishes of Drs. Banting and Best for insulin to always be affordable and accessible.

This is why I advocate with JDRF.

 

Gail deVore was diagnosed with T1 in 1972 at the age of 11. After growing up near Wichita, Kansas, she moved to Denver in the early 1980s. Now, Gail’s medical team is at the Barbara Davis Center.

She received a Master’s Degree in Information Systems from the University of Denver and owns 2Degrees, LLC, a web development and graphic design company. Gail is a founding board member of The Nightscout Foundation, a non-profit organization that supports development of technological solutions for those with T1, advocates on behalf of T1, and provides college scholarships for students with T1.  She is a member of the Board of Directors of the National Council of Jewish Women, Colorado Section, a progressive nonpartisan advocacy organization. Gail is also an active member of Patients for Affordable Drugs, a national organization formed to find solutions to the high cost of prescription medications.

Gail is married to Michael Raizen. Between the two of them they have 4 adult children. In her spare time, she is a competitive tennis player and is a member of the popular bluegrass band, Rocky Mountain Jewgrass.

 

 

Interested in becoming an advocate?    Read about JDRF’s commitment to Achieving Access to Insulin and Innovation and Sign up to Advocate and join the fight with us at www.jdrf.org/advocacy  Contact Kelli to get involved  local efforts including hearing more about State policies that affect T1D’s in Colorado and Wyoming  – Kraleigh@jdrf.org.