I don’t have expensive tastes. For real.
I’m content with eating store-brand corn flakes, satisfied with drinking Miller Lite Beer, comfortable driving an 8-year-old used car and wearing Levi jeans that I purchased when I had a 30%-off coupon from Kohl’s.
If only there were such cost-saving options available when it comes to Multiple Sclerosis disease-modifying therapies. Consider that:
• There are over 20 disease-modifying therapies currently at an average cost of over $80,000/year – five of them are now priced at more than $100,000 per year; almost all these treatments must be taken each year.
• A person with MS spends three times as much out-of-pocket than the average person in employer plans.
• As many as 70% of people living with MS rely on co-pay assistance programs to maintain access to their disease-modifying therapy.
I’ve pretty much lived under all three of the aforementioned realities the entire time I’ve lived with MS. Yes, I’m thankful there are DMTs available to slow the progression and severity of this disease of the central nervous system and am extremely grateful for the patient assistances that make my treatments possible.
But when is enough enough?
Let’s face it: The seemingly out-of-control costs for these medicines is causing some with MS to take drastic actions such as skipping treatments, taking less than the prescribed amount, taking expired medications or stopping treatment altogether.
This is why Jennifer and I continue to advocate at the federal and state levels to urge our elected officials to reign in these costs and ensure the nearly 1 million people in the United States living with MS have access to affordable DMTs.
On May 10, we had our third virtual meeting in one week with a Michigan State Senator – Senator Michael MacDonald – to encourage his support of HB 4353 to help patients access needed medications. It is the positioning of the National MS Society that such legislation would help to remove barriers to access and not decrease the assistance available to help patients access their medications.
This meeting, where we accompanied fellow activist Jeanne Langley, was part of the 2021 NMSS Virtual State Action Day in Michigan. The formal event was held on Tuesday, May 4, where we virtually joined over 75 activists statewide to encourage better prescription drug policy for people living with MS in Michigan. We collectively reached 29 state senators, meaning that 3/4 of the chamber heard from at least one MS Activist about the importance of affordable MS medications in Michigan.
That morning, Jennifer and I met with Nick Plescia, the Legislative Director for our Senator Rick Outman, to share our perspectives on why this legislation is so important for members of the MS community. Then, in the afternoon we connected with fellow activists Holly Pendell and Tammy Willis to meet with Senator Curt VanderWall, the chair of the Senate’s Health Policy and Human Services Committee that currently is considering HB 4353.
You’ve heard Jennifer and me say time and again how empowering it is when we use our voices, our stories and our experiences to advocate for improving lives.
And when it comes to our recent MS activism work, we’re doing more than advocating for change. We’re advocating about the dollars for disease-modifying therapies that carry an average annual cost – remember $80,000? – that is equivalent to the 30-year mortgage I took out on my first house.
If you want to start using your voice and your stories to take action of your own, learn more about becoming an MS activist on the NMSS activism website.