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Illinois MS Activists Testify on Cost of MS Drugs

April 1, 2019

Illinois MS activists Eric Johnson and Angel Heinz testified before the Prescription Drug Affordability & Accessibility Committee on the patient perspective on access to medications in Springfield, Illinois last month. The National MS Society strongly supports access to MS medications and urged the committee to improve transparency and accountability.

Angel Heinz of Chicago, Illinois shared:
"Today, thanks to medication that slows the progression of the disease, my faith, determination and the support of friends and family I am living well with my MS. I do know that that without a cure for MS, I never know when it will attack again and what function it will rob from me next. This reality, coupled with the daily symptoms of the disease can often be scary. What we do know is that the medication that I take has slowed the progression of the disease and I have not experienced active disease progression. Staying on this medication is crucial to my future, and the future of my extremely energetic five year old son and six year old daughter!

But medications can only change lives if people can access them. Medications have to be affordable and the process for getting them simple and transparent. The price of MS medications have risen steadily since 2004.  In just five years - from 2013 to 2018 - the median price of the MS treatments increased more than $20,000. From less than $60,000 to $80,000 - often spurred by multiple price increases in a single year. 

I have taken an MS disease-modifying therapy since October 2012. This medication first became available in the late 1990s. At that time, it was less than $10,000 a year. In October 2012, when I started taking the drug, it was $50,975 a year. Today, the cost of this drug is $86,554 a year. How is this justified?"

Eric Johnson of DeKalb, Illinois shared:
"Medical research innovation brought me to a point where I’m able to take a medication that appears to be slowing down my disease, allowing me to live my life. These medicines do not reverse the damage caused by the disease but work to prevent further progression, making it important to find a medication that works for the patient as quickly as possible. 

My disease modifying therapy—and other symptom management treatments for MS—are very expensive. Looking at the benefit statements sent to me while on my previous medication showed a pre-benefit billing expense of around $7600 per treatment, a treatment that is required monthly for over $90,000 per year. The National MS Society believes that medications must be affordable and the process for getting them simple and transparent. We have to have both innovation and accessibility. Medications can only help change lives if people can access them."

The National MS Society supports HB 53 to establish transparency requirements for drug manufacturers, and require them to disclose information regarding the rationale fo significant price increases or high introductory prices. The Society also supports HB 3493 to establish a state prescription drug affordability board, under the guidance of a stakeholder council, to analyze the impact of high-cost drugs on the state healthcare system and patients, and even having the authority to establish a price "ceiling" in certain circumstances.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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