I am a member of T1International, a patient-led advocacy organization that takes no funding from pharmaceutical companies. T1I is working with more than 30 Chapters across the USA to ask federal and state legislators to enact legislation specific to insulin that requires full and genuine transparency from manufacturers and the rest of the supply chain and makes insulin available to everyone who needs it.
I was glad to be invited as a member of the DC Metro Area T1International Chapter to share my story and perspective at the roundtable on drug pricing, which brought together freshman and junior members of the Democratic Caucus under the leadership of Chairman Hakeem Jeffries. T1International was invited as one of a few non-pharma funded groups to provide an overview of the impact of insulin prices on patients and talk about solutions Congress can lead.
At this drug pricing roundtable, myself and the other T1International representative focused on insulin prices in the United States. I spoke on my experience as a person with type 1 diabetes, the rising prices of insulin, and how these prices have affected me since I was diagnosed at the age of 10 years old.
I believe it’s important that I educate individuals about type 1 diabetes, as well as advocate for lower insulin prices, because the price of insulin is causing type 1 diabetics to suffer - often having to choose between insulin and other day to day necessary costs. People are dying every day due to this illness and I believe these death rates would be lower if we had affordable insulin.
I was diagnosed with type 1 diabetes when I was 10 years old. Upon my diagnosis, I was solely focused on the emotional burden of having to take insulin injections for the rest of my life (among other issues that come with this illness). The financial burden and further emotional burdens had not yet occurred to me or dawned on me.
I unexpectedly lost my dad when I entered my teenage years. I experienced this life changing moment, and the severity of my situation became much more clear because I had to face being without insurance for a long period of time. I had no control of when I would be able to easily obtain another vial of insulin again.
Two instances that I remember in particular were when my mom had to pay over $2,000 out of pocket for insulin and when I was rushed to the emergency room due to high blood sugar with no means of lowering it. I had run out of insulin so our only option was to wait until I got sick and go to the ER. I left the hospital with a $10 pharmacy coupon and a large hospital bill – obviously the coupon was solely temporary relief.
As I searched for employment post graduation, there were many times where I had to ration my insulin in order to have enough. Rationing insulin is incredibly dangerous. We should never have to cut back on our daily doses, which cause painful complications.
Moving forward, I hope to see the list price of insulin lowered. Diabetics should never have to ration their insulin. Millions of people have lost their lives because they could not afford to take their insulin. Instead of being a burden, something people with diabetes fear being every day, they chose to suffer and hoped to find a way through. The consequence of not affording insulin is pain, worry and death.
I ask on behalf of all people with diabetes that policymakers continue to listen to our stories and take real action to hold the pharmaceutical industry accountable and lower the list price of insulin. The longer we wait, the more people will lose their lives.
The pharmaceutical companies should take responsibility for what they have caused and reverse this situation. If policymakers put a law in place to cap insulin prices, there won’t be room for these companies to exaggerate prices at the cost of patients. Considering the cost to produce a vial of insulin is estimated to be somewhere around $5, a cap on the price to make it similar to the cost of other high-income countries seems more than reasonable. I would like to see such a cap. Such a cap must also allow those without health insurance and patients from the poorest and most disadvantaged communities to also have access to it. Whether someone has insurance or not should not impact the price that people have to pay or restrict access to essential medication.
I appreciated the platform that myself and T1International were given to share our experiences and our clear requirements for any proposed solutions. I hope we will soon see a reduction in insulin costs to ensure it is truly affordable for everyone, and that is what we will continue to push for.
List of Caucus members in attendance: