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Multiple sclerosis patient Victoria Stuessel skips doses of her high-cost prescription drugs

Even with health insurance, Stuessel pays $400 a month in copays for her prescriptions

CNN  — 

When President Trump gives his speech about prescription drug prices Friday, perhaps no one will be listening more intently than Victoria Stuessel.

If the President has successful ideas for cutting drug prices, maybe she can stop skipping doses of her multiple sclerosis medicines.

Perhaps she can send her 3-year-old daughter, Adilyn, to preschool. Right now, she can’t afford it, given the high prices of her MS drugs.

Maybe – just maybe – they could even take a family vacation.

“Right now, we’re just scraping by,” said Stuessel, 33. “It’s horrible.”

Even with health insurance, copays for her six prescriptions cost $400 a month. That’s a big burden on her family’s income: Because of her MS, a degenerative neurological disease, her cognitive skills declined. She had to quit her job as an optician. Her family now depends solely on her husband’s earnings as a truck driver.

Victoria Stuessel pays $400 per month for prescriptions for multiple sclerosis.

Other families are struggling, too.

A survey last year by the American Society for Clinical Oncology found that even severely ill patients have had to compromise. The survey of 195 cancer survivors found that 13% postponed filling prescriptions or didn’t fill them at all, 11% ordered medications from sources outside the United States, 9% skipped doses of their medications, and 8% cut pills in half to save money.

“All across the country, people are struggling to pay for their prescription drugs,” said David Mitchell, president and founder of the nonprofit Patients for Affordable Drugs. “They’re doing things like refinancing their homes and going without food to pay for their drugs.”

Two members of his group are scheduled to be present Friday at the President’s speech at the White House Rose Garden.

Sue Lee of Crestwood, Kentucky, had to stop taking a psoriasis drug when she found out it would cost her over $10,000 a year.

Pam Holt of Granger, Indiana, had to refinance her home last year to afford $640 a month in copays for a drug to treat her multiple myeloma, a type of blood cancer.

While patients have suffered, pharmaceutical companies’ profits have soared.

A 2017 report by the US Government Accountability Office showed that from 2006 to 2015, estimated pharmaceutical and biotechnology sales revenue increased from $534 billion to $775 billion.

The industry group Pharmaceutical Research and Manufacturers of America has started a campaign called Let’s Talk About Cost to address the concerns of “many Americans [who] are struggling to afford their medicines.”

The campaign says that although pharmaceutical companies set the list price for brand name drugs, “middle men” – insurance companies and pharmacy benefit managers – shift health care costs to patients.

Stuessel says she’s tired of the finger-pointing. That’s why she and her husband will be paying close attention to Trump’s speech from their home in La Puente, California.

She voted for Trump, and she hopes that in his speech, he transcends blame and comes up with a concrete plan to bring down prices.

She’s doesn’t want to skip doses of her medicine anymore. She’s doing poorly enough as it is. She slurs her speech sometimes and has trouble with simple tasks, like writing or tying her shoes. Just doing the dishes can be unbearably painful.

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    She wants to be able to afford to send her daughter to preschool.

    In his January State of the Union speech, Trump promised that his administration would make “fixing the injustice of high drug prices one of our top priorities” and pledged that “prices will come down.”

    Stuessel liked hearing that.

    “I do believe our President is on board for doing something very special for Americans!” she wrote in an email.

    And if prices don’t come down?

    “I don’t take unfulfilled, broken promises lightly,” she said. “You want your leader to follow through on something that affects so many families.”

    CNN’s John Bonifield contributed to this story.