Focus on Access

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A letter from the editor

There is a unique crisis going on in the United States. People with diabetes are dying from their inability to access insulin. Others are left making difficult decisions, cutting back on or “rationing” their insulin, taking extra jobs, crowdfunding, or forgoing paying bills in order to afford life-saving medication.

The system that determines insulin pricing in the U.S. is complex, confusing and frustrating. Beginning with insulin manufacturing and ending with the vial in the hands of a patient, the insulin supply chain involves a host of additional players. Often it seems that each party conveniently blames the others for the current cost issues.

How did insulin pricing get so out of control in the United States? And how do we move forward? To fully understand the scope of the insulin access crisis in the U.S., Beyond Type 1’s editorial team sought out a range of perspectives — a patient with Type 1 diabetes, an endocrinologist working with underserved communities, leaders of advocacy movements, an insulin manufacturer, and a United States Senator. We’ve also reached out to a pharmacy group to share their perspective, and hope to include them in ongoing discussions when we hear back.

Sharing a varied range of perspectives gives us an opportunity to look carefully at where there is agreement and disagreement, to examine why, and to identify avenues for change. We asked each author to address: what can we do NOW to fix this? And what are you most hopeful about for the future? Our hope is that the Focus On Access perspectives provide our readers with information and understanding they can use to get involved with pushing insulin access forward.

Beyond Type 1 is committed to advocating for universal access to high quality, modern insulin. Insulin must be available to people with diabetes regardless of employment or insurance status and across all demographics at an affordable price point and without barriers.

If you or someone you know is struggling to get insulin click here. If you would like get involved with access advocacy click here.

 – Todd Boudreaux, Editorial Manager

 

Perspectives

Focus On Access: Charity Shuster-Gormley


To the pharmaceutical industry and the insurance companies: do you think I enjoy having to live in fear on a daily basis that I will not wake up due to a blood sugar that has gone too low overnight? Or that I will potentially go into an irreversible coma due to my blood sugars being too high?READ MORE

Focus On Access: Elizabeth Pfiester, Founder of T1International


We feel strongly that transparency is the best first step towards finding the best solutions to this crisis. All players keep passing the blame: the pharma companies are blaming PBMs, PBMs are blaming pharma companies, and insurance companies also get blamed. It’s time to shed some light on what's happening so we know how we can best tackle this issue.READ MORE

Focus on Access: Anne Peters, MD


I can't tell you how much the issue of insulin access bothers me. It's just criminal and it's hurting people. Nobody asked to have Type 1 diabetes. I don’t think it is widely understood how difficult it can be to treat.READ MORE

Focus On Access: Mike Mason, Vice President of Lilly Diabetes


List prices have gone up for several reasons: from the evolution of the U.S. health reimbursement system to the steep investment that goes into keeping our manufacturing facilities state-of-the-art.READ MORE

Focus on Access: Julia Boss, President of Type 1 Diabetes Defense Foundation


Payers are the colossal elephants in the room of U.S. insulin pricing. They’ve used their weight to push for big rebates, and then to create benefit designs where Americans pay for prescriptions as a percentage of “gross pharmacy claims expense.” READ MORE

Focus on Access: Senator Patty Murray (D-WA), Ranking Member of the Senate HELP Committee


I’ve heard from families across Washington state who are worried about high insulin costs, and whether they’ll have to choose between putting food on the table and paying for a drug they need to live. I’d actually say this is the number one issue that comes up when people stop me at the grocery store, and I know my colleagues in other states are hearing about this back home too.READ MORE

 

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