At 26 years old, Karen Jury stood before a class of elementary students as her right arm tingled before falling completely numb. That led to a conversation with her doctor. Years of migraine headaches and a recurring sensation of shock waves throughout her body, simply from the turn of her head, resulted in a scheduled spinal tap and an MRI. She received a diagnosis of Arnold-Chiari malformation, a structural defect in the base of the skull and cerebellum.
That was 1997, and Jury, who viewed the symptoms as a nuisance but not debilitating, opted against the surgery that the condition required. Stepping back from her teaching position and entering the throes of parenthood with four young children, her symptoms were soon forgotten until 11 years later with the return of the tingling in her hands and the shock-like sensation every time she raised or lowered her head. Lhermitte’s phenomenon, she would later discover, is a classic indicator of relapsing-remitting multiple sclerosis. An MRI confirmed the diagnosis when it lit up with active plaque lesions on her brain in 2008.
Next began the parade of trial-and-error therapies. The first was six months of Rebif (interferon beta-1a, Merck Serono), an every-other-day injectable, “but my liver function got out of whack and I had flu-like symptoms every day after my injection that pretty much had me couch-bound,” Jury said.
She then took Copaxone (glatiramer acetate, Teva Pharmaceuticals Inc.) for two years, but she discontinued due to uncomfortable golf-ball sized injection-site reactions. A holistic approach followed with nutrition and supplements, but it was not enough to block her symptoms or, she feared, to prevent the progression. In 2013, soon after it was FDA-approved, she began taking a twice-a-day oral dose of Tecfidera (dimethyl fumarate, Biogen Inc.), and for the past seven years, her MS has not progressed. A bout with breast cancer and a high white blood cell count pulled her off the drug for eight months in 2014, but she was able to eventually resume taking Tecfidera and now serves as a patient ambassador for Cambridge, Mass.-based Biogen.
That is not to say that Jury is symptom-free or that she has no worries for the future. Almost daily, an overwhelming fatigue takes hold. The stress of her patient journey has, at times, contributed to depression. But Jury, now 48, is a warrior. Cancer-free for seven years, her new battle is to help drive policy to reduce barriers to effective MS treatments.
As a Pennsylvania district activist for the National Multiple Sclerosis Society, she meets with legislators locally, statewide and nationally.
“I go to these national conferences and I see people of all stages of MS and all forms of MS and it’s very humbling to me. I feel very grateful, but I also know that that could be me with a walker. That could be me with a wheelchair or a cane. And that’s a little scary for me,” she said.
Without advancing research and accessible medicines, those patients have few options. Jury’s health insurance and Biogen pay 100% for her medication, covering $9,500 a month, but with drug prices rising drastically, there is a deep-seated fear of losing access to medications that work.
“My concern is if my husband would lose his job and we wouldn’t have insurance, how would we continue?” she asked. “We certainly wouldn’t be able to afford this medicine. And at what point will the insurance and the company stop paying for it?”
While Tecfidera has worked consistently for her, she constantly educates herself on other treatments and new research. Her neurologist recently suggested Mavenclad (cladribine, Merck KGaA), approved in March 2019, as a potential next-choice for her.
“Because I have failed on two previous drugs, I know that the possibility exists that I could fail on this one, so I need to know that there are options,” she said.
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