April 23, 2018
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Legislature: Protect the chronically ill

By Elizabeth Hope, Special to the BDN

In the coming weeks, Maine legislators will make a critical decision on whether or not to protect patients in Maine who suffer from chronic or life-threatening illnesses from having to absorb exorbitant out-of-pocket costs in order to get their much needed medications. Specifically they are considering whether or not to pass LD 1691.

This bill will prevent private insurance companies from forcing patients in Maine to pay what’s called specialty drug co-insurance. It affects anyone who’s on any kind of specialty medication — patients living with cancer, multiple sclerosis, rheumatoid arthritis, hemophilia, lupus, Crohn’s disease and more.

I am a 39-year-old mother with multiple sclerosis. My experience is typical of many MS patients and will illustrate why this bill will help thousands of Mainers. I will not personally benefit from it because I am insured at the federal level with Medicare because of my disability. I ask that you please consider my experience with tiered specialty prescription plan co-pays as a cautionary tale.

Medicare Part D has both specific cost limits and specialty drug tier co-insurance. I have spent all of my personal savings on my medication since being diagnosed with MS in June 2007. I now rely on my elderly parents to help me pay for the cost of my life-saving drug. My parents are retired, and we estimate that if costs don’t increase too much, our family has enough money saved to pay for my medication for the next 10 years.

Although it is a bleak situation, I consider myself fortunate to have access to a FDA-recommended medicine that has helped me to regain some of the physical abilities MS has affected, including my vision, my hearing, my balance, my ability to walk and to eat.

Here’s what a tiered prescription plan looks like for me, a typical Mainer with MS:

In 2011, my family and I spent $8,299 out-of-pocket on my specialty drug, classified as a tier 4. My average monthly prescription cost is $691. If I were part of a private insured plan with a typical specialty tier co-pay structure, the average monthly cost of my medicine would be $882.

If legislators allow private insurers to implement payment tiers for specialty drugs, Mainers could be forced to pay up to 33 percent of the cost of the drug they’re on, just like I have to.

Compounding the issue: insurance companies can do this without warning. I’ve paid hundreds of dollars for a prescription one month only to find, to my surprise, that it increased in cost the next time I had to refill it. It is very difficult to plan for drug cost. I just know it’s going to be expensive and it’s always more than I paid the last time.

My drug is an injection, which is impossible to split like a pill. There is no generic option. In order to be effective, this medication has to be used on a regular basis. I can’t stop and start.

If legislators don’t pass LD 1691, patients in Maine, like those across the country, will face cost burdens that can run into the thousands every month. We’re all already paying our health insurance premiums month after month, year after year, a cost that already runs several thousand dollars a year.

MS, like other illnesses and diseases, is unpredictable and devastating for patients and our families. Paying for our life-saving medications shouldn’t be as well. Please protect some of your most vulnerable constituents and our families by supporting LD 1691.

Elizabeth Hope lives with her son and her parents in Yarmouth.

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