Rachael Drazan Malmberg wants to live long enough to see her 4-year-old daughter grow up.

Although she never smoked, the Watertown woman was diagnosed with Stage 4 lung cancer last year. She pays $9,000 a month for the drug that keeps it at bay.

Monica Theis of Robbins­dale, a single mother of two, has Stage 4 breast cancer. She takes a drug that costs $11,000 a month for 21 pills.

They were among a dozen advocates and people living with cancer, HIV, multiple sclerosis and other chronic conditions who met Sunday with Sen. Tina Smith, D-Minn. The group spoke of the challenges of paying for prescription medications and how drug costs can be lowered.

In her first piece of stand-alone legislation, Smith has introduced a bill to close a loophole that allows major drug companies to "pay to delay" bringing more affordable generic drugs to market.

"The big drug companies are making billions of dollars and they are spending hundreds of millions lobbying Congress," she said. "I think they need to come to the table to help us solve this problem."

Smith said there is "real strength" in the research and innovation done by drug companies, "but I often think that is used as an excuse for these costs that are going up 40, 50, 100 percent. That just seems wrong to me."

Smith's bill, introduced Feb. 28, is the Expanding Access to Low Cost Generic Drugs Act. In her travels throughout Minnesota, Smith said the high cost of health care, particularly prescription medicine, always comes up.

Devastating news

Malmberg, 32, is a former collegiate and Olympic athlete — she played hockey for the University of Minnesota — and a military veteran.

"Not your typical cancer patient," she said. "To hear the diagnosis of lung cancer was a little bit of a shock, not only related to my age but my former health status. It's scary for me to think that because of lung cancer I may not be here to see [my daughter] grow up," Malmberg said.

Her copay for Tarceva, a targeted therapy that keeps the cancer under control, is $9,000 a month.

"Not only do I need this drug just to sustain my life, but the price I'm continuing to incur has been dramatic," Malmberg said. "I'm at about $240,000 from a health care standpoint in costs, just from April 2017."

Three years ago, Nikki Foster learned she had relapsing-remitting multiple sclerosis. The drug she takes, Tysabri, costs $84,000 a year.

Foster, 44, of Brooklyn Park, has become a volunteer for the Minnesota Multiple Sclerosis Society. Twenty-five years ago, she said, there were no therapies to slow the progression of the disease and prevent disability. Today, there are 15 treatments on the market; they cost from $66,000 to $90,000 a year. In 2004, the treatments cost $25,000 a year.

Theis, 45, who has two daughters, is a four-time cancer survivor. At age 19 she was diagnosed with Hodgkin's lymphoma. In 2004, 2011 and 2015, it was breast cancer. She's currently at Stage 4.

She takes three drugs, including Ibrance, which costs $11,000 a month.

Ibrance, she said, "keeps me out of chemotherapy, keeps me working full time and taking care of my kids."

Theis pays more than $900 a month in health insurance premiums for herself and her children. Her out-of-pocket expenses are another $3,600.

Every January, she must juggle whether to fill her prescription first or get a scan or see her doctor. It comes down to "who's going to demand payment immediately and who's going to see me and bill me," Theis said.

"You find a lot of cancer patients juggling their treatments," she said. "Some of us stockpile our pills because we have extras at the end of the month and we think, 'What if this doesn't get approved next month?' "

Access to medications

In addition to cost, there's a huge problem with access, many of the participants said Sunday. A change in insurance plans means something that is covered one month might not be the next. Patients must know exactly what questions to ask, whom to ask and how to ask.

"It almost feels like the system is rigged in helping you figure out what is covered," Malmberg said.

Said Theis, "A lot of people are too sick to be as persistent as we are. The elderly, people with language barriers don't get the care they need."

Erin Parrish of AARP Minnesota said that in polls and surveys, members say the cost of prescription medications is their No. 1 concern. In roundtable discussions in Duluth and Rochester, she has heard repeatedly that people are stretching their medications to make them last and that others have stopped filling prescriptions for diseases such as asthma.

"I wish I could bring all of you to Washington, D.C., to testify before the Health Committee on the impact of this on your lives," Smith said Sunday at the meeting, which was at the University of Minnesota School of Public Health.

"It's unbelievable the challenges … so you can get the medication that is a matter of life and death," she said. "I don't see how any of you around this table is bearing the cost."

Said Malmberg, "You make it work."

Pat Pheifer • 612-673-7252