No one wants to see their child in pain – but this is what happened when my son was diagnosed with diabetes at four years old.
I remember our first trip to the hospital, where I had to hold him down as the doctor gave him his first insulin shot. Four-year old’s don’t understand what diabetes is – and they don’t understand shots help them. They only understand shots hurt.
“Daddy, why are you letting them do this to me?” he cried.
I remember the long nights as my wife and I took turns waking up in shifts to poke his fingers to check his blood sugar.
As a parent, you do what you have to do to make sure your child is well. I know this is what so many of you are doing out there today, as well.
Diabetes and the issues that surround it are personal to me, just as it is so personal to so many of you. It is bad enough to worry about your own or your loved one’s diabetes – but with the rising cost of insulin, the mounting expense is another stressful burden in an already stressful situation.
Just like I looked out for my son in the night when he was first diagnosed, I am looking out for those who are suffering from these high costs. That is why I worked across the aisle with my friend and co-chair of the Diabetes Caucus, Rep. (D-Colo.), to conduct an investigation into the skyrocketing cost of insulin.
The price of insulin has doubled since 2012, after nearly tripling in the previous 10 years. A patient’s out-of-pocket insulin cost can exceed $300 per vial; some regularly use two or more vials per month. Patients have resorted to skipping doses, which can have dangerous, and even fatal consequences. Others have racked-up thousands in debt to cover the cost of insulin.
For example, we heard from Robin in California who said she had to “resort to the only resource she had” to cover the cost of insulin – credit cards. Robin was forced to get a second job to cover the nearly $20,000 in debt she racked up due to diabetes.
There is no good reason for hard-working people around the country to incur mountains of debt just to afford insulin.
The insulin market involves drug makers, wholesalers, pharmacies, pharmacy benefit managers and insurers. The drug’s list price is based on factors including manufacturers’ operational expenses, research, and development costs and marketing expenses. The list price is also affected by intermediaries in the supply chain, and there are incentives which drive up the price further.
At the same time, relatively few downward market forces exist to keep the price under control: In the United States, insulin is manufactured by only three companies, while three large wholesalers’ control about 85 percent of the drug distribution market. We are also not convinced pharmacy benefit managers leverage their power for the people – especially diabetics faced with these outrageous insulin costs.
Insulin makers have protected their brand-name formulations – barring generic versions – with a practice called “evergreening,” through which the company gets a new patent for a slight change to the formulation. By doing this, a company could maintain market exclusivity by getting a new patent for only a tiny tweak to the drug’s formula or packaging.
This is why we have pushed for transparency to embarrass insulin manufacturers into lowering their prices – and the threat of this legislation working its way through the House is already having an impact. All three drug manufacturers have set up patient assistance programs which help some, but not all, of those who need help affording insulin.
However, we are not stopping there. We recently introduced the bipartisan SPIKE Act which would require all drug manufacturers to publicly justify large price increases and launch prices for high-cost drugs.
The Bipartisan Problem Solvers Caucus, which I co-chair on the Republican side, recently endorsed a set of principles for supporting future legislation to lower prescription drug prices nationwide and will vote accordingly as a 44-member block, focusing on price transparency and increased competition.
My colleague, Rep. Diana DeGette and I will continue to shine a light these issues and put pressure on insulin manufacturers to lower costs for people. As the co-chair of the Diabetes Caucus, I will continue to urge my fellow members in the House to support improved diabetes research, education, and treatment because the people we represent who are suffering from the extensive burden of high insulin costs have suffered enough. It’s time for a change.
Reed represents the 23rd District of New York and is co-chair of the Diabetes Caucus.