Maine dad struggles as cost of son’s life-saving insulin triples

May 16--With an estimated 30 million Americans, including 137,000 Mainers, living with diabetes, the skyrocketing cost of insulin has become a matter of national concern.

Last week, Paul Grant, a 42-year-old construction estimator from New Gloucester, told the U.S. Senate Special Committee on Aging that he faced paying more than $900 out of his own pocket for a 90-day supply of insulin to keep his 13-year-old son alive. His insurance policy, which he purchases off the individual market, carries a high deductible that he has to meet before it will cover the cost.

"That's nearly $1,000 for a treatment Solomon absolutely needs, and about three times more than I had been paying," Grant told the committee, which is chaired by Maine U.S. Sen. Susan Collins. Panicked, Grant said he ended up purchasing a 30-day supply from a local pharmacy, which, after applying a coupon, cost him $322.

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He was buying time until he could find a more affordable solution. He consulted his insurance company, asked friends for advice and shopped around online, where insulin and other supplies for people with diabetes can be found on sites like Craigslist and Ebay. Eventually, Grant found a pharmacy in Canada that would sell him a 90-day supply of the type of insulin his son needs for just under $300, including a $50 shipping charge.

"I had no choice," he said. "Sol had to have insulin."

Grant's son was diagnosed with type 1 diabetes 4 years ago, when he was just 9 years old. His normally healthy, active, athletic boy suddenly became listless and lethargic, complaining of stomach pain and flu-like symptoms. His doctor initially thought Sol had influenza.

After a week with no improvement, Grant's wife took Sol to the hospital emergency department. His blood sugar level was over 800 milligrams of glucose per deciliter of blood -- normal is 100 mg/dl or lower.

"You can imagine the feelings his mother and I experienced when we heard the words, 'Your son has type 1 diabetes,'" Grant told the committee. The diagnosis meant a lifetime commitment to managing a potentially deadly disease. Insulin was key to Sol's survival.

There are two kinds of chronic diabetes, type 1 and type 2. Type 1 diabetes, formerly known as Juvenile Onset Diabetes, occurs when the pancreas does not produce natural insulin, which is needed to break down glucose -- the end product of all nutritional intake -- to fuel and nourish the body. The exact cause is not known, but it is an autoimmune disease, triggered when the body's own immune system targets the pancreas.

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Type 2 diabetes is more common in adults than in children and is most often linked to obesity. Type 2 diabetes often can be managed with diet, exercise and medications, but many people with it also require insulin.

In both conditions, sugar builds up dangerously in the bloodstream and can cause a multitude of serious, sometimes life-threatening complications.

Prior to the discovery of insulin in the early 1920s, a diagnosis of diabetes was a near-certain death sentence. The discovery changed the outlook dramatically and was viewed as a major medical breakthrough.

The three Canadian scientists who made the discovery and developed the technique for purifying animal insulin so it could be used by humans sold the patent for $1 each, "to ensure affordable insulin for all who needed it," according to William T. Cefalu, chief scientific, medical and mission officer for the American Diabetes Association, who also spoke at the committee hearing.

"Further discoveries have resulted in new formulations of insulin over the years, advancing from animal insulin, to human insulin, and more recently in the 1990s to analog [laboratory-grown] insulins," Cefalu told the committee. "In recent years there have been fewer advancements in insulin formulations, yet prices continue to rise, even for off-patent insulins."

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Virtually all insulin available in this country is manufactured by one of three companies: Denmark-based Novo Nordisk, Eli Lilly in the U.S. and Sanofi in France. No generic versions are available, even though the medicine is nearing the 100th anniversary of its discovery.

Between 2002 and 2013, Cafalu said, the average price of insulin nearly tripled, creating a "tremendous financial burden" for many who live with diabetes. The cause is unclear, he said, largely due to the lack of transparency in the supply chain, including transactions among manufacturers, wholesalers, pharmacy benefit managers -- companies that administer prescription benefits for health insurers -- insurance companies and pharmacies, he said.

In 2016, the American Diabetes Association called on these entities to disclose information about the cost and pricing of insulin, and also asked Congress to take action to ensure insulin's future affordability. The organization is also circulating a petition in support of these demands.

At the end of last week, President Donald Trump laid out a plan for reducing the cost of prescription drugs, including manufacturers' rebates, the promotion of generic drugs and requiring drug companies to include the cost of medication on television ads. The plan stops short of allowing the powerful Medicare program to negotiate lower prices directly with manufacturers.

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The plan has been criticized for not taking a more direct approach to controlling drug prices, for being too vague and for lacking a timeline for achieving measurable progress. Maine independent health policy consultant Mitchell Stein calls it "smoke and mirrors with a dash of policy."

But Collins, a moderate Republican who has worked in several capacities to confront the growing cost of certain prescription medications, including the launch in 2015 of a bipartisan Senate investigation into the issue, said in a statement that the Trump plan represents "an encouraging step forward" in increasing transparency and holding down drug costs.

"While dramatic breakthroughs by the pharmaceutical industry have led to new medical miracles, they often come with hefty price tags, placing a particularly heavy burden on seniors, the uninsured, and those Americans with high deductibles," she said.

Grant told Collins that the cost of a 90-day supply of insulin from the Canadian pharmacy has not changed since he placed his first order in January. But he recently checked the pharmacy service that his insurance company promotes and found the price had jumped even further, to more than $1,400.

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