It is the only medicine that can keep millions of people alive. Yet every year thousands of people die because they don’t have access to it.
“Without it I die, if I don’t buy it I die,” said Falyn Shilts, a type 1 diabetic.
A mother of four, Shilts was diagnosed with type 1 diabetes when she was 14 years old.
“Losing weight at a rapid pace, unnatural, especially at 14, very tired, just all the symptoms but we didn’t know. I was rushed to the ER and had to start injections of insulin to stay alive,” explained Shilts.
And that would be the case for the rest of his life.
Why do people need insulin?
Dr. Gunjan Gandhi, an endocrinologist with UF Health in Jacksonville, says it’s important to understand that there are three types of diabetes.
Gestational diabetes affects 10% of pregnant women in the United States each year. Type 2 diabetes – is the best known – and is widely associated with being overweight.
Then there is type 1.
“It usually affects children, teenagers or young people, but we see it in babies, and we also see it in older adults,” Dr Gandhi said.
The exact cause of type 1 diabetes remains a mystery.
“There is a kind of trigger. It could be a virus, it could be an environmental factor, so there is an inciting event that causes them to develop type 1 diabetes,” Dr Gandhi explained.
A type 1 diabetic is unable to create insulin on his own. Insulin is a vital hormone that regulates blood sugar in the body. Without it, the body will end up breaking down its own fat and muscle.
“People with type 1 diabetes depend on insulin to survive,” explained Dr. Gandhi.
How much does insulin cost?
Although 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 to manage her diabetes.
“You’ve got test strips, you’ve got the needles that go on them, the monitor, the alcohol swabs to clean, glucose tablets in case you have low blood sugar, you’ve got medical supplies. ’emergency, relief supplies.’
“So it’s just not surprising to hear when people say I just can’t afford it,” asked News4JAX consumer researcher Lauren Verno. “People are really thinking, ‘Do I buy groceries or do I buy my insulin?’ “Shilts said.
This situation was never meant to be a reality. Insulin was created over 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 diabetes-fighting hormone “belongs to the world.”
How did we come here?
“Since the late 1990s, the cost has increased 1000 times,” explained Dr Gandhi.
Many argue that one of the reasons for this price increase is the lack of competition. Three pharmaceutical companies – Novo Nordisk, Sanofi-Aventis and Eli Lilly control 90% of the world’s insulin supply. It is estimated that it costs around $2 to $6 for these drug manufacturers to produce a vial of this life-saving drug. Still, it sells for up to $1,000 a bottle.
“Do you ever worry when you diagnose someone that they won’t be able to afford this drug?” we asked Dr. Gandhi. “It’s always in the back of my mind as a doctor. We see the anxieties, the stress that this engenders. They become desperate. They are scared,” he replied.
Dr. Gandhi explained that the resources he can offer these patients are limited.
The three drugmakers mentioned earlier offer coupons, but they don’t cover everything and don’t work if you have Medicare or Medicaid:
Last year Walmart announced that it would offer low-cost insulin.
“Walmart’s private label ReliOn, the new offering includes analog insulin vials ($72.88) and FlexPen® ($85.88). These products will save customers1 between 58% and 75% off the spot price of branded analog insulin products, which translates to savings of up to $101 per branded vial or $251 per package of FlexPens ® brand. »
Savings yes, but still out of reach for many families. Even with insurance, Shilts said it was a constant battle with the insurance company.
“Co-payments can also change because insurance companies control what they want to cover.”
Shilts went on to say, “One month it might be $25, the next month it might be $75, the next month they might say we don’t cover that anymore. It’s crazy.”
Which has left countless families with limited options.
“Do you believe that people have lost their lives because they don’t have access to this insulin? Verno asked. “Yeah, absolutely people died. We have seen it,” Dr Gandhi said.
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 private health insurance cost sharing for a month’s supply of selected insulin products at $35 or 25% of a plan’s negotiated price (after any price concession), whichever is less, beginning in 2023. The bill caps cost-sharing under Medicare’s prescription drug benefit for one month’s supply of medication insulin covered at $35 starting in 2023. But the law will only cover those with insurance or Medicare, leaving many in the same situation they are in now.
The law is also part of a much larger spending bill, which Republicans say would end up raising premiums and not addressing key pharmaceutical issues.
What are your options?
JDRF is the world’s leading organization funding type 1 diabetes (T1D) research..
For people looking for insulin assistance programs, they recommend starting with nonprofits.
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 address the immediate need for people in the United States to access insulin as we continue to work on long-term solutions to address insulin affordability. Anyone who needs help can visit GetInsulin.org for a personalized action plan, available in English and Spanish.
Partnership for prescription assistance is a program sponsored by pharmaceutical companies, physicians, patient advocacy organizations and civic groups that helps low-income and uninsured patients obtain free or low-cost brand name medications.
Needy Meds is a non-profit organization that maintains an extensive database of patient assistance programs, state assistance, drug rebate programs, and free or low-cost medical care. You can search its database for free. The site also contains 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 drugs and co-payment 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 non-profit mail order pharmacy for the uninsured or underinsured.
Community health centers are health care providers that provide medical care to anyone, with or without insurance and with a sliding scale payment option (your cost of using 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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