When I turned 65 last month, it was time to deal with that dreaded entity, Medicare. It was a confusing few weeks, but I was careful to read everything sent to me, trying to sort it all out.
The biggest surprise was the prescription list. Of course my first concern was the cost of insulin. My endocrinologist (diabetes doctor) had started me on an injection pen, and I was ready to go back to vials if the pens cost too much.
What did I find? Every type of insulin cost exactly the same co-pay.
I had expected older medications to be on a lower tier, making them cost less, but this was not the case. There was no insulin listed in tier one medicines, which are the generics. No insulin on tier two either. All of the injectable products such as insulin were in tier three, making them more expensive.
The first question on my mind was “Why?” A medication as old as insulin, which has been available since 1921, ought to have at least one generic brand. But there is not.
That is sad when you know the history of insulin. Doctors had known about diabetes for thousands of years but had no effective treatment for it.
In the 1860s, a doctor named Paul Langerhans found little areas like islands in the pancreas where hormones were made. He named them after himself, the islets of Langerhans. Then in the 1880s, the researchers Oskar Minkowski and Joseph von Mering found that dogs whose pancreases were removed developed all the signs of diabetes.
In 1910, another doctor named Sir Edward Sharpey-Schafer discovered which substance was missing from the pancreases of people with diabetes. Since this hormone came from the islets of Langerhans, he named it “insulin,” which comes from the Latin word for island.
In 1921, two doctors named Frederick Banting and Charles Best determined how to extract insulin from dog pancreases, and they successfully injected it into dogs whose pancreases had been removed. Along with their colleagues J.B. Collip and John Macleod, the researchers developed a purer form of insulin from the pancreases of cows, and in 1922, they successfully injected the substance into Leonard Thompson, a boy who had been dying from Type 1 diabetes. Because they wanted their discovery to change the world, Banting and Best sold the rights to insulin to the University of Toronto for $1.
So why is it not available more cheaply today? Here is what happens: Every time insulin is improved, for instance by making it absorb at a different rate, a new patent is issued. So the cost of insulin remains high.
There are also other reasons for insulin’s higher cost. It has a short shelf life of months, not years, and it has to be injected. There is no pill for insulin. The medication must be stored at cool temperatures. All of this adds to the expense.
Also, there is not as much demand for insulin as for many other medications. Only about one in ten people with diabetes has Type 1 and must be on insulin to survive. And about half of people with Type 2 diabetes never need insulin at all because of effective oral and injectable medications, along diet and exercise modifications.
But for those of us who do need insulin, the high cost of this medicine can be a serious burden. If you are one of the many people with diabetes who do not get all the care they need, the cost is a huge issue.
It has been an uphill battle to find ways around the cost, but I have found the help I needed. Waiting for callbacks, leaving messages, navigating through paperwork and long automated menus did lead to getting answers.
Most states have programs in place to help with diabetes care, but you have to find them or know someone who can. Also, doctor’s offices have information on help you can get directly from the pharmaceutical companies.
Once you have found some help, keep good records so you know who to get back to if things fall apart. I have learned not to trust my memory. Phone numbers, names of people, and agencies you found through hard searching — document all of it.
Do not feel ashamed to ask for help. It is there for you. I wish we could change the way things work and make the hands that help easier to find.
But do not ever go without the treatment for diabetes your doctor has prescribed for you because of the cost. All of us need help at some time. You have diabetes. There is nothing to be ashamed of in that.
Insulin and all of the other things you need should not be a burden to you. I wish they were not. Please ask for help. You matter.
Editor’s note: Let us know if you have ever had to do without diabetes supplies or medicines due to money problems by taking our poll.
Reaping the benefits of physical activity is easier than you might think. Bookmark DiabetesSelfManagement.com and tune in tomorrow to find out how to take that first step from nurse David Spero!