It’s the only medicine that can keep millions of people alive. Yet, every year thousands die because they do not have access to it.
“Without this, I die, if I don’t buy it, I die,” said Type 1 diabetic Falyn Shilts.
A mother of four, Shilts was diagnosed with Type 1 diabetes at 14-years-old.
“Losing weight at a rapid, not natural pace, especially for being 14, very tired, just all the symptoms but we didn’t know. I was rushed to the emergency room and had to start on insulin injections to stay alive,” explained Shilts.
And that would be the case for the rest of her life.
Why do people need insulin?
UF Health Jacksonville Endocrinologist Dr. Gunjan Gandhi says it’s important to understand there are three types of diabetes.
Gestational diabetes affects 10% of pregnant women in the U.S. every year. Type 2 Diabetes - is most known - and is largely associated with being overweight.
Then there’s Type 1.
“It affects typically kids, teenagers or younger but we see it in babies, and we see it in older adults as well,” said Dr. Gandhi.
The exact cause of Type 1 diabetes remains a mystery.
“There is some type of trigger. It could be a virus, it could be an environmental factor, so there is some inciting event that pushes them into developing Type 1 diabetes,” explained Dr. Gandhi.
A Type 1 diabetic is unable to create insulin on their own. Insulin is a vital hormone that regulates blood sugar in the body. Without it, the body will eventually break down its own fat and muscle.
“People with Type 1 diabetes are dependent on insulin to survive,” explained Dr. Gandhi.
How expensive is insulin?
While Insulin is just as essential as water for Type 1 diabetics, it doesn’t come cheap. Even with insurance, Shilts said she spends hundreds of dollars each month managing her diabetes.
“You have test strips, you have the needles that go on this, the monitor, the alcohol swabs to clean, glucose tablets in case you have low blood sugar, you have emergency supplies, backup supplies.”
“So, it’s just not surprising to hear when people say, I just can’t afford this,” asked News4JAX Consumer Investigator Lauren Verno. “People are really contemplating, ‘Do I buy groceries, or do I buy my insulin?’” said Shilts.
This situation was never supposed to be a reality. Insulin was created more than a century ago by a group of Canadian scientists. After winning the Nobel Peace Prize, the scientists sold the patent for $1. They said the hormone for battling diabetes “belongs to the world.”
How did we get here?
“From the late ‘90s the cost has risen 1000-fold,” explained Dr. Gandhi.
Many argue one of the reasons for that price increase, is the lack of competition. Three pharmaceutical companies—Novo Nordisk, Sanofi-Aventis, and Eli Lilly control 90% of the insulin supply to the world. It’s estimated it costs about $2-6 for these drug makers to produce a vial of this life-saving drug. Yet, it’s sold for up to $1000 per bottle.
“Do you ever get concerned when you are diagnosing someone that they are not going to be able to afford this medicine?” we asked Dr. Gandhi. “It’s always in the back of my mind as a physician. You can see the anxieties, the stress that it causes. They get desperate. They are fearful,” he answered.
Dr. Gandhi explained the resources he can offer to these patients are limited.
The three drugmakers mentioned earlier offer some coupons, but they don’t cover everything and don’t work if you have Medicare or Medicaid:
Last year Walmart announced they would offer low-cost insulin.
“Walmart’s private ReliOn brand, the new offering includes analog insulin vials ($72.88) and FlexPen® ($85.88). These products will save customers1 between 58% to 75% off the cash price of branded analog insulin products, which translates to a savings of up to $101 per branded vial or $251 per package of branded FlexPens®.”
A savings yes, but still out of reach for many families. Even with insurance Shilts said it is a constant battle with the insurance company.
“The co-pays also can change because the insurance companies control what they want to cover.”
Shilts went on to say, “One month this can be $25, the next month it could be 75, the next month they could say we don’t cover this anymore. It’s crazy.”
Which has left countless families with limited options.
“Do you believe people have lost their life because they don’t have access to this insulin? asked Verno. “Yeah, absolutely people have died. We have seen it,” said Dr. Gandhi.
Recently the issue has taken center stage on Capitol Hill. The Biden administration is pushing for the Affordable Insulin Now Act.
Specifically, the bill caps cost-sharing under private health insurance for a month’s supply of selected insulin products at $35 or 25% of a plan’s negotiated price (after any price concessions), whichever is less, beginning in 2023. The bill caps cost-sharing under the Medicare prescription drug benefit for a month’s supply of covered insulin products at $35 beginning in 2023. But the act will only cover those insured or under Medicare, leaving many in the same situation they are in now.
The act is also part of a much bigger spending bill, which Republicans argue would end up raising premiums and not addressing the main issues with pharmaceuticals.
What are your options?
JDRF is the leading global organization funding type 1 diabetes (T1D) research.
For people looking for insulin assistance programs, they recommend starting with nonprofit organizations.
- GetInsulin.org. JDRF is pleased to partner with Beyond Type 1 and dozens of other organizations on GetInsulin.org, a new tool that will help meet the immediate need for people in the United States to access insulin while we continue working on long-term solutions to address insulin affordability. Anyone in need of help can visit GetInsulin.org for a customized action plan, available in English and Spanish.
- Partnership for Prescription Assistance is a program sponsored by pharmaceutical companies, doctors, patient advocacy organizations and civic groups that helps low-income, uninsured patients get free or low-cost brand-name medications.
- NeedyMeds is a nonprofit organization that maintains an extensive database of patient assistance programs, state assistance, medication discount programs and free or low-cost medical care. You can search its database for free. The site also has information on thousands of programs to help consumers through the application process.
- RxAssist is an online database of pharmaceutical company programs that provide free or affordable medicines and co-pay assistance.
- RxHope is a web-based resource where you can search by medication to locate assistance programs. It also offers help with the application process.
- RxOutreach is a nonprofit mail-order pharmacy for uninsured or underinsured people.
Community Health Centers are health care providers that provide medical care for anyone, with or without insurance and with a sliding scale payment option (your cost to use the center is tied to your income). A list of these health centers can be found here: https://findahealthcenter.hrsa.gov. They can help you access insulin or other prescriptions at a reduced cost.
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