My name is Janet Schwartz, and I’m a retired nurse from Newark, DE. I’m 74 years old and was finally diagnosed with multiple sclerosis at 59 years old after experiencing symptoms, like nerve and joint pain, for a very long time.
The price of my medications has tarnished what are supposed to be my golden years.
For several years, I was forced to rely on grants to afford Tecfidera, which carries a list price of over $8,200 per month. However, I haven’t had this medication for nearly a year because the drug maker now says there are no grants. It’s frustrating because I loved this medication. It drastically improved my quality of life and my symptoms. Now I’m no longer taking the medication, I’ve experienced intense hot flashes, leg spasms, double vision, brain fog, and chronic pain. I’m ready to give up.
I also have type 2 diabetes and was forced to stop taking Trulicity because $200 a month was too much for me. I’m on another drug for the condition, but it doesn’t work as well at all. The switch also costs me time. I have to monitor my blood sugars extremely closely on this less-effective drug.
It is all so difficult to live with.
My lawmakers should know I live on Social Security — $1,600 a month. I would like to ask them how they’d feel if their mother or sister or someone in their family needed medications and couldn’t afford them? Medications should be for everybody, not just people who can afford it.
I have adult children and I don’t want them to have to pay for my drugs and worry about me. I didn’t have children because I wanted to be taken care of in my old age. I just want them to be happy. I just want to afford my prescription drugs.
WASHINGTON, D.C. — In testimony before the House Energy and Commerce Subcommittee on Health today, patient advocate Therese Ball will tell her story and issue an urgent call for passage of H.R. 3 to help her and millions of Americans by lowering drug prices.
Ball, a grandmother, retired nurse, and patient living with multiple sclerosis, will share her experience of being unable to afford the medications she needs to keep her MS under control. The legislative hearing, “Negotiating a Better Deal: Legislation to Lower the Cost of Prescription Drugs,” will review a variety of bills, and Ball will explain why she supports H.R. 3, which would lower drug prices by allowing Medicare to negotiate on behalf of all Americans.
“I had a front-row seat to the horrifying reality of our drug pricing system: Drugs don’t work if people can’t afford them,” Ball of Ogden Dunes, Indiana, will explain to the committee.
Ball was diagnosed with MS in 2003 and was prescribed the medication Copaxone to manage her symptoms. When Copaxone first came to market in 1997, it was priced at $769 a month. Currently, that same monthly supply costs $7,114 — almost 10 times higher.
“I was completely overwhelmed by the price tag, and no matter how many times I crunched the numbers, I couldn’t make it work,” Ball will describe her experience in 2017. “So I made the terrifying decision to go without the drug. The health consequences were immediate and severe. I lost my memory and my quality of life suffered tremendously.”
Ball will explain that H.R. 3, the Elijah E. Cummings Lower Drug Costs Now Act, would help beneficiaries like her by allowing Medicare to negotiate for lower prices on expensive drugs like Copaxone. MS is a progressive disease, meaning Ball will continue to need new and innovative medications to keep her condition at bay. Ball will say that Big Pharma’s argument that any curbs on its unilateral pricing power will cause important innovation to grind to a halt is simply not true.
“Drug companies have taken this idea of innovation — this hope — and turned it into an ultimatum for patients. They say we must let them charge whatever prices they want, or we can say farewell to future cures. But that’s a false choice,” Ball will say.
“I urge you to vote in support of H.R. 3 — patients have waited long enough,” she will conclude.
H.R. 3., which was recently reintroduced, would allow Medicare to negotiate lower prices on behalf of all Americans, prevent price gouging, and direct more money to the National Institutes of Health for critical research to ensure innovation and new drug development. If passed, H.R. 3 would both bring relief to patients and save nearly half a trillion dollars for taxpayers by restoring balance to our drug pricing system and curbing pharma’s unilateral pricing power.
The hearing begins today at 11:30 AM ET. Read a copy of Therese Ball’s testimony here.
My name is Scarlett Woodard and I am a multiple sclerosis patient. At 57 years young, I expect to have many more full years ahead of me. But as my circumstances have changed, I have had to readjust my expectations.
I’m now living on a fixed income and staying on my own in Georgia in order to be close to family. I was formerly an office manager, but I had to stop working because of the increasing severity of my multiple sclerosis. The nerve pain I deal with on a daily basis is excruciating. It has affected my ability to drive, my mobility, the use of my hands — even my ability to smile.
I can’t smile because I can’t afford Lyrica. Lyrica is a medication that treats nerve pain, and it would help with the stinging in my mouth and the effect the nerve pain has had on my taste buds. The cheapest I could find this medication was $240, but depending on my coverage, it would sometimes be $400. Before my divorce, my husband’s insurance would help me pay for it. It really improved my health and made me feel so much better. But now I only have Medicare, and they just don’t cover the Lyrica — so I simply can’t afford it.
If I were able to pay for the Lyrica, I would be able to crochet and paint like I used to love doing. I would be able to smile and better enjoy the foods I love. I know there are thousands of others suffering from multiple sclerosis who are in the same situation as me. I wanted to speak up and share my story not only for myself, but for others dealing with these horrible drug prices.