Health & Human Services Secretary Alex Azar in 2018.
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Health & Human Services Secretary Alex Azar in 2018.

The Trump administration has taken steps to allow some prescription drugs to be imported from Canada. While the proposal is far from final, the hope is to provide lower costs for families struggling to pay for expensive medications.On Dec. 18, the Trump administration proposed allowing some prescription drugs to be imported from Canada. GPB’s Ellen Eldridge explains how that move could help families struggling to pay for expensive medications.

Health and Human Services Secretary Alex Azar called the action by HHS and the Food and Drug Administration historic.

“They represent the bold nature of President Trump’s agenda for lowering drug costs,” Azar said in a Dec. 18 press release.

Some medications in the United States have skyrocketed and become prohibitively expensive. Take the drugs for a condition called West syndrome for instance.

West syndrome was first described by Dr. William James West in the 1840s. The condition in which infants experience dramatic spasm is extremely rare, but the effects can be serious, leading to permanent brain damage, President and CEO of the Tuberous Sclerosis Alliance Kari Luther Rosbeck said.

About 1,200 babies are diagnosed with these spasms each year, and Rosbeck said they are often caused by unknown, underlying genetic issues, such as in the case of tuberous sclerosis.

Babies with Down syndrome are also at risk, as one Georgia mother learned.

Amanda Dodd said she knew her son, Greyson, had Down syndrome and thought that when Greyson dropped his head it had to do with low muscle tone.

But, after taking video and showing the physical therapist, she said it looked more like a seizure and they told the pediatrician, who had no idea what to make of it.

If the spasms aren’t caught and treated early, Rosbeck said babies can go on to develop seizure disorders, autism or lower cognitive ability.

“We know that if we don't treat infantile spasms immediately, it can lead to a lifetime of epilepsy,” Rosbeck said.

The spasms consist of a sudden stiffening where arms, legs and head bend forward, according to a description by the Epilepsy Foundation.

Fortunately, in Dodd’s case, a neurologist recognized the signs of infantile spasms and immediately offered help through medication. The first drug the family tried didn’t work so, after about a month, Greyson started on Acthar Gel injections, also known as ACTH.

The price of this medication increased nearly 97,000% from a decade ago, according to an investigation by CNN’s Wayne Drash.

The injections used to treat these spasms are prohibitively expensive for people without insurance. Dodd’s son’s medication was $375,000 for a month’s supply, she said. That was three vials at $125,000 per vial.

Greyson needed two injections a day that the family had to administer themselves.

Thankfully, the insurance we had at the time, after a few days of arguing with the doctor about the necessity, did end up covering the cost of the medication,” Dodd said.

Trump’s plan has not mentioned specific medications such as ACTH, but the proposed plan would give states authority to import certain medications and make them available through local pharmacies.

The Canadian government criticized the plan last month when its U.S. ambassador said that importing medicines from Canada would not significantly lower U.S. prices, according to Reuters, which previously reported that Canada had warned U.S. officials it would oppose any import plan that might threaten the Canadian drug supply or raise costs for Canadians.

A 75-day comment period on the notice of proposed rulemaking is currently underway and comments on the draft guidance are being accepted for 60 days after publication in the Federal Register.

The Dodd family in 2015. Amanda Dodd (left) and Mike Dodd hold 6-month-old Greyson, who was receiving ACTH injections for infantile spasms at the time.
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The Dodd family in 2015. Amanda Dodd (left) and Mike Dodd hold 6-month-old Greyson, who was receiving ACTH injections for infantile spasms at the time.