Protecting Access to Disease Modifying Therapies in Montana

In October, MS Activist Deanna McCann was featured in a press conference to highlight an important regulatory change that will make it easier for people to access the medications they need. Together with Monica Lindeen, Montana's Insurance Commissioner, Deanna helped raise awareness about the cost of MS medications and how high out-of-pocket costs can hinder access to treatment.

In Montana, and many other states, insurance plans typically cover MS disease-modifying therapies in specialty prescription drug tiers requiring patients to pay 20, 30, even 50 percent of the drug cost in co-insurance. As a result of an inquiry by the National MS Society, insurers now offer plan options with graduated co-pays, ensuring that consumers on those plans will pay no more than $250 per month for their MS disease-modifying therapies.

The work of activists like Deanna makes a difference in the lives of people affected by MS! Read more about the press conference on our blog and in the Billings Gazette.

Inspired and empowered, an MS Activist is born

When Veronica used to think about “activists,” she pictured angry and aggressive rioters tossing red paint on fur coats and throwing bricks through shop windows. Now, when she wants to picture an activist, she just looks in the mirror.

“I never realized how influential I could be simply by telling my own personal story to legislators,” Veronica says. “It’s empowering!”

Diagnosed with MS in 2009 at the age of 28, Veronica very quickly lost her ability to work. While trying to manage the exhaustion, depression and physical and cognitive issues caused by her MS, she was also caring for her younger sister, who has cerebral palsy. Fortunately, Washington’s “Disability Lifeline” program was truly just that – a lifeline that covered Veronica’s $4,000 a month prescription drug bills and provided a safety net for housing and other expenses.

Veronica became an office volunteer for the Greater Northwest Chapter, working 15 hours a week researching ways to connect people living with MS to community resources. When the Chapter suggested she expand her volunteerism to include advocacy, she was initially reluctant.

Then she learned that a gaping hole in the state budget had put the Disability Lifeline program on the chopping block.

“I was really intimidated at the very thought of going to Olympia and talking to legislators,” Veronica recalls. But the Chapter made it easy for her by providing step-by-step tips for the meetings, talking points on the budget bill and even a carpool with another MS Activist. She felt well prepared.

On the Day of Activism on Jan. 31 – one day before her state benefits were due to expire – Veronica found herself chatting with some of the most powerful lawmakers in the Capitol. Shy at first, she soon “just started talking to them like regular people, telling my story from the heart and putting a name and face to the programs they were considering cutting.”

As she left, the chair of the House Ways and Means Committee told her, “You’ve got to come back to Olympia and tell your story to more legislators. They need to hear you.”

And so she did go back, testifying before the committee and following that up by writing a passionate letter to the editor of the committee chairman’s hometown newspaper.

The Disability Lifeline program was spared by the budget ax.

“We live in a democratic system – it’s not a spectator sport – and legislators really do want to listen to us,” says Veronica. “I’ve learned how easy it is to just be yourself, tell your story and let your voice be heard.”