At noon on June 26th, I sat in the Hale & Hearty on 7th Avenue and 35th Street awaiting Dr. Kasia Lipska. It was a hot day in New York City, but I was determined not to let it see me sweat. Dr. Lipska is a physician scientist and endocrinologist at Yale University. She published a study last year which revealed 1 in 4 of the Yale clinic’s insulin dependent patients had rationed insulin due to cost. She has become a public voice addressing exorbitant drug prices and how they make insulin inaccessible to patients. On his recent listening tour, President and CEO of NovoNordisk, Lars Jorgensen, scheduled a meeting with Dr. Lipska. At T1International’s suggestion, Dr. Lipska requested that a patient attend the meeting with her. That patient was me.

I’ve had type 1 diabetes (T1D) for 22 years. This past spring I completed premed at Columbia University. I decided to wait a year before applying to medical school so that I could serve as a patient advocate. It was a true honor to meet Dr. Lipska, someone who’s work I greatly admire, and to represent fellow T1D patients that day. Neither of us knew what to expect, but we prepared ourselves to present a unified message: lower the list price of insulin in the United States to save lives.

First, we met Todd Hobbs, MD and Chief Mission Officer. If you are active on Twitter you may remember Dr. Hobbs as the face of a PR campaign for human insulin (NPH/R) as an alternative for those who cannot afford analog insulin (Novolog). The post was widely regarded as insensitive to the needs of T1D patients. In person, Dr. Hobbs came across as a pleasant man. Both he and one of his sons are T1D. I asked Dr. Hobbs if he worried about his son’s ability to afford insulin and healthcare, especially once he aged out of his parent’s health insurance plan. Yes, he admitted. An hour later, Lars arrived with Camilla Sylvest, a Danish executive VP. Like Dr. Hobbs, both were pleasant and attentive. People can be pleasant while they are hurting others. People can feel bad about how a system contributes toward painful and undignified deaths and continue to participate in that system because it rewards them with money and influence. As we were escorted into a conference room, I reminded myself of this, determined to bring these people into a real conversation about the very real needs of T1D patients.

We heard the usual arguments. The US system is complex. Pharmacy Benefit Managers (PBMs) were taking too much of the cut. Passing rebates through to patients is the key federal move that Novo Nordisk supports. I was asked my thoughts on innovation - didn’t I want to see progress and new developments? I responded that of course I’m excited by possibilities that would improve my life, but I’m not willing to watch people die painful, undignified deaths so that I can have a new treatment or cure.

Throughout our hour long conversation, the requests of the T1D community were put forward:

• Lower the list price to an actually affordable price for everyone. If the price is low enough, insurance coverage no longer needs to be a consideration.
• Stop spending lobbying dollars to end transparency and healthcare system change. Instead, spend those dollars supporting efforts that truly lower the cost of insulin for everyone, such as single payer.
• Even if profits from the high price of insulin are being used to pay for new drugs and innovations, it is resulting in our economic disenfranchisement before it is costing us our lives. We did not volunteer for this. We are already burdened by a demanding metabolic condition. Stop financially burdening us as well.
• Meet with patients who have been hit hardest by the high price of insulin. Listen to their stories. Work with them to develop solutions that truly serve our needs as patients.

Lars, Camilla and Todd are paid handsome salaries to serve the financial interests of Novo Nordisk’s investors. I, like every member of T1International’s #insulin4all Chapters, volunteer my time. We, patient advocates, are committed to keeping every person with T1D alive and thriving.

I hope Lars will use his position as President and CEO to lead Novo Nordisk and the whole of the pharmaceutical industry to save lives by lowering the price of insulin. Although Lars said that he is “Not shying away from anything that costs money,” it was clear that he was not going to lower the list price. In fact, Nicole Smith-Holt met with Eli Lilly executives over a year ago and she has not heard from them since. If the parent of a child who died from rationing insulin did not change their minds, I don’t know what will. I’m not holding my breath and we, the diabetes community, are not going to wait. Only legislation will ensure insulin is truly accessible and affordable for all. We will not stop until that is the reality because our lives depend on it.

Read a lightly edited version of the meeting transcript here.