MIDDLETOWN — The story of Kristin Whitney Daniels, who has lived with Type 1 diabetes for the past 13 years, is like that of many others who struggle daily with affording life-saving medications.
“I have the double whammy. I am also on Humira, one of the most expensive drugs in the country, and insulin,” said the chapter leader of T1 Connecticut’s #Insulin4All group.
“Without insulin, I would be dead in 48 hours,” she told those gathered Wednesday for a round table talk on the skyrocketing cost of prescription drugs. U.S. Sen. Chris Murphy held the hour-long discussion at the Village at South Farms senior living facility; it included legislators, advocates, professionals and seniors.
A member of the U.S. Senate Health, Education, Labor and Pensions Committee, Murphy has called on the Trump administration to allow Medicare to negotiate drug prices to bring down the cost of prescription drugs for seniors, he said.
“I never set out to be an advocate. This disease has stolen so much of my life already. It’s a 24-hour disease. I’m constantly teetering between lows and highs, and just making sure I make it to the next day,” Daniels said.
“When there are diabetics my age dying around me, I can’t stay quiet anymore,” said Daniels, who reported 25 percent of Type 1s are rationing their medications: a “deadly practice.”
She is among patients “making the last drops of that vial last for another week or another month, cutting back on your food intake, or overexercising” in an effort to save money.
When she turned 26 and was no longer eligible to be covered by her parents’ health insurance, Daniels learned her insulin would cost her $2,400 a month, more than she made in a month at the time.
She felt like she was “staring death in the face,” Daniels said.
After extensive research, becoming a patient at a community health center, and qualifying for assistance through a federal subsidy program, she finally found a diabetes medication that costs her $14 a month.
On any given day in Connecticut, one of five patients aren’t taking their drugs because they can’t afford them, Murphy said.
“The numbers here are absolutely stunning,” he said.
A June survey of the prices of 106 drugs showed their costs increased 27 percent. Another determined costs had risen 10 percent during the last six months, Murphy said.
“That is four times the rate of inflation — the cost of drugs outpacing anything else you are paying for in your life. The reason for that is not a mystery. Drugs don’t exist in a marketplace like any other market in the world, because most of these drugs do not have generic competitors,” he told those gathered.
Barriers also exist on the federal level, Murphy added, most notably for insulin, which has only one generic available. “The drug companies are absolutely gouging you,” said Murphy, who hopes patients can one day get much more affordable drugs from Canada, which negotiates lower drug prices.
Of the 19 U.S. companies that reported $1 billion in profit in the third quarter of 2018, 14 are drug manufacturers, he said.
In the first quarter of this year, of the top 10 most profitable health care firms, nine were drug makers, Murphy added.
“To me, the holy grail ultimately is just deciding to join the advanced world and regulate drug prices,” Murphy said. Allowing Medicare to negotiate directly with pharmaceutical companies is the quickest way to achieve that, he said.
A number of pieces of legislation have been proposed to address the problem.
The Senate is considering a bill that would cap out-of-pocket drug costs for those on Medicare. Another proposes any company that increases the cost of a particular drug by more than 10 percent file a statement with the U.S. Department of Health and Human Services explaining why the increase is needed.
A third would hasten the pathway for generic insulin to come to market, and penalize companies that continue to raise prices for the diabetes drug.
State Sen. Matt Lesser, D-Middletown, said he’s heard “from practically every door I’m knocking on,” that “we need a holistic approach to tracking and regulating prescription drug prices” through creation of a health policy committee.
When the price of a specific drug contributes to an overall rise in health care costs, Lesser said, “we can hold hearings on it. We can name and shame drug companies that are responsible. Right now, we really don’t have the data on what happens in the cloak of darkness.”
“We have gifted the rest of the world with [affordable] drug prices, because we have no ability to say enough is enough,” Murphy said.
Common Councilwoman Mary Bartolotta spoke as a caregiver and advocate for her father and mother-in-law’s health care. When she helped them sign up for Medicare, they would review their medications so as to choose the best health plan.
After Jan. 1, some of her mother-in-law’s drugs weren’t covered by her new insurance provider, Bartolotta said.
“When I think of that, and I see what she went through: started skipping her medication because she didn’t want us to be subsidizing her, and watching the stress that put on her life, it was absolutely awful,” the councilwoman said.
Registered nurse Kit McKinnon, who works for Middlesex Health, said that in 1922, Canadian physician Sir Frederick Grant Banting gave his insulin drug patent “to the world. He knew then that insulin for Type 1 diabetics is lifeblood,”
Prior to that year, people with T1 died without medication, she said. “He knew this insulin basically was giving them life. Seven million of them.
“Now, our legislators are talking about looking to Canada again for another gift — basically having them give us this insulin when they already gave the world the patent,” said McKinnon, who recently saw a 33-year-old woman with Type 1 diabetes hospitalized because her condition is out of control.
The patient lost her health insurance. Now, she’s experiencing heart failure, McKinnon said.
“This isn’t just a matter of us going bankrupt, it’s us compromising our health because of these high prices,” Murphy said, accusing pharmaceutical companies of using a “Byzantine, Rube Goldberg-esque pricing system.”
Editor’s note: This article has been updated to correct that Kristin Whitney Daniels has Type 1 diabetes, not Type 2.