Mass. needs to respond to insulin cost crunch

2 bills would improve access to life-giving therapy

COSIMA MOSHER was diagnosed with Type 1 diabetes in January 2019 at the age of 11. After two days in the hospital, she realized her life would never be the same. Her mother, Heather, recounted that one minute they were celebrating the New Year and the next she was in the intensive care unit watching her little girl hooked up to a million life-saving machines. Cosima told her mom she suddenly felt so alone and that she wanted to go home and be normal again.

Like so many who have their lives upended by diabetes, Cosima knew her life would never be the same.

It was hard for Heather to watch her daughter face the burden of a life-long chronic illness. She also immediately recognized the family’s financial burden of having a child who needs insulin. If she lost her job and health insurance, how would she afford insulin for her daughter? Heather was also fearful knowing Cosima will someday have to face this burden too – always knowing she will need to have a job with good insurance, just to stay alive.

For those with diabetes who are insulin dependent like ourselves, insulin is as necessary to live as water, but it is priced as expensive as gold. Insulin list prices have increased, in some cases, by as much as 1,000 percent in the past two decades. Doctors Frederick Banting and Charles Best are credited with discovering insulin in 1921, and doctors John MacLeod and John Collip are recognized for developing it as a treatment. In January 1922, a 14-year-old boy who had become bedridden with Type 1 diabetes became the first patient given insulin, saving his life. The doctors sold their patent for insulin back to the University of Toronto for only $1, believing that insulin should not be used for profit but should be made available to everyone. That is why the price increases in this 100-year-old drug are so shocking and distressing.

Today, three insulin manufacturers have cornered the market and control 90 percent of the world’s insulin supply and 100 percent of the US supply. While these companies are successfully producing insulin at scale, it has not translated to low costs for people. A vial of insulin costs between $150 and $250, while a pack of insulin pens costs between $375 and $500. People living in the United States with Type 1 diabetes spend an average of $6,000 per year on insulin.

The patent for insulin was not intended to make profits for pharmaceutical manufacturers – it was sold for $1 so it could be made widely available to the people who need it to stay alive.

The state of Massachusetts must take action immediately to improve people’s access to this life-giving therapy. State legislators have the chance to make a real difference for Massachusetts residents like Cosima. On July 13, the Legislature’s Joint Committee on Health Care Financing will hear two bills – H.729, An act to ensure prescription drug cost transparency and affordability, and S.771, An act relevant to pharmaceutical access, costs and transparency. Both of these bills will make insulin more affordable and accessible, as well as create a more transparent drug pricing process.

H.729 will help people who are insulin dependent by establishing a program to provide emergency insulin at no- or low-cost to those in urgent need. S.771 will cap consumers’ out-of-pocket costs for insulin. Both pieces of legislation will create a new cost assistance program for Massachusetts residents to lower out-of-pocket costs for insulin, as well as certain medications used to treat other chronic health conditions. Finally, both bills will ensure the underlying prices of prescription drugs are kept in check through new transparency provisions and an affordability review process for the highest-cost drugs and drugs that have seen rapid price increases like insulin.

Meet the Author

Chris Noble

Regional organizer, FreeTheVaccine Campaign
Meet the Author

Brittany McWilliams

Massachusetts chapter lead, #Insulin4All
Now that Cosima has been diagnosed with Type 1 diabetes, she knows that diabetes will always be part of her life. She wants to help others when she grows up by becoming an endocrinologist or a diabetes educator and work at the very hospital where she was diagnosed. The Legislature has the opportunity to make insulin more affordable so that other children like Cosima will not have to worry about how they will afford insulin when their world is already being turned upside down by a diabetes diagnosis.

Chris Noble is the health justice organizer at Health Care For All and Brittany McWilliams is the Massachusetts chapter lead for #Insulin4All.