Maine dad struggles as cost of son’s life-saving insulin triples
Last week,
"That's nearly
[Trump promises sweeping drug price cuts, targets lobbyists, cheap overseas prices]
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
"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.
[Trump plan for drug prices won't include direct negotiations]
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
"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."
[Opinion: My husband's near-death experience shows why access to heath care in essential]
Virtually all insulin available in this country is manufactured by one of three companies:
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
At the end of last week, President
[Editorial: Want to lower drug prices? Let Medicare negotiate.]
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.
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
"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
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