A few years ago, Ivy Marcucci was on top of the world. She closed out her senior year at Riverside-Brookfield High School as captain of the soccer team, president of the National Honor Society, prom queen and, finally, valedictorian of her graduating class.
It seemed as though nothing — not even the occasional feelings of numbness she felt in her hands and arms — was going to slow her down.
But last December, while home for winter break from Brigham Young University, an otherwise ordinary trip to the movies with her family changed the course of the 20-year-old’s life.
While trying to watch “Mary Poppins Returns,” Marcucci had trouble seeing the screen, complaining to her father, an emergency room physician, that her eyes felt blurry and she was seeing double.
After the movie, Dr. Jared Marcucci examined his daughter, noticing her eyes were not moving in tandem. Diagnosing her with cranial nerve 6 palsy, he immediately ordered an MRI for Ivy.
After undergoing the initial MRI on Dec. 29, Ivy finally had an explanation for the on-and-off hand and arm numbness she had been experiencing for the past few years, along with the vision problem — a diagnosis of multiple sclerosis.
“The doctor walked in, and I was, like, ‘Oh, this isn’t good,'” Ivy said about receiving the news. “You could just tell from looking at her that this is real and she’s going to tell me something not good.”
Ivy and her family didn’t yet know the extent of her MS, but it turned out that she had a very aggressive form, one which progressively destroys the insulating covers of nerve cells in the brain and spinal cord, disrupting nervous system activity and leading to a wide range of symptoms and disabilities which either occur in isolated, relapsing forms or build into progressive disabilities over time.
Some patients experience mild symptoms of muscle weakness and coordination, while others experience daily symptoms which eventually progress into losing motor skills, including the ability to walk.
MRI findings showed Ivy had multiple large lesions in the myelin in her brain, with doctors telling the family it would only be a matter of time before Ivy would most likely end up with difficulty walking or total confinement to a wheelchair.
So, immediately following Ivy’s diagnosis, Jared and his wife, Matia, began researching the best course of action to treat their daughter’s disease.
Traditionally, MS is treated through high-dose steroids and other disease-modifying therapies. Medications work for some to stop or slow the progression of the disease, but for others, especially those with aggressive forms of MS, medications do little to nothing to help.
At first, Ivy began exploring disease-modifying treatment with a neurologist at an MS clinic in Utah by school, but she and her parents were looking for more than just something to maybe help — they were looking for a better treatment.
“After she was diagnosed, I started researching what is the best treatment and what is the best thing to do, and I knew these medicines ultimately don’t work that great,” Jared said. “I knew this doctor at Northwestern that has been doing these stem-cell transplants for like 25-30 years and was doing trials for MS, so I contacted him.”
Jared reached out to Dr. Richard Burt, one of the only doctors in the U.S. performing hematopoietic stem-cell transplants (HSCT) to treat MS — the same physician who actress Selma Blair recently chose to famously help treat her MS.
Jared knew Ivy would need to get into one of Burt’s studies to choose this route of treatment, so he sent Burt an email “on a wing and a prayer.”
“I explained who I was and explained Ivy’s situation in the hopes that he would contact us, and he did,” Jared said. “We talked and he said she probably won’t qualify only because she hasn’t failed other therapies. The problem was, if we started her on other therapies in order to fail them, then she needed to have a wash-out period before she can even get the stem cells, so we were in this weird limbo land.”
HSCT, which temporarily shuts down and reboots the immune systems of patients, allows the body to rebuild damaged nerve cells.
In a January 2019 news release from Northwestern Medicine’s Feinberg School of Medicine, Burt said the success of his trial is paving the way for a new approach at treating MS.
“[The trial] opens the door for this therapy,” Burt said. “Now we can work on improving it, refining it and making it safer.”
Before Burt would consider Ivy for HSCT treatment, she had to first get approved by a neurologist at Northwestern, who ultimately agreed with the other neurologists the because of Ivy’s age and her aggressive case of MS, she needed to act now.
But going down this route, the Marcuccis were faced with yet another tough decision — how to pay for the transplant.
Ivy’s insurance through Blue Cross and Blue Shield of Illinois denied coverage for HSCT treatment, stating in their policy that they do not cover stem-cell transplants for MS, because it is considered experimental.
The Marcuccis continued to submit appeals to the insurance company, but were told repeatedly the transplant was experimental therapy and not medically necessary, despite the fact that Blue Cross and Blue Shield does cover stem cell transplants for Illinois residents on federal employee plans.
Citing privacy reasons, Blue Cross and Blue Shield of Illinois says it does not comment on specific members’ medical history or disclose benefit information.
In a landmark study published in January in the Journal of the American Medical Association (JAMA), Burt published his five-year study of HSCT.
Burt reported that in 87 percent of the people who underwent HSCT, they were basically disease-free and needed no medications, compared to 3 percent of people with MS in the disease symptom-free zone by using traditional MS treatment medications. Essentially, the study shows, 97 percent of people with MS who only take medications are failing at seeing any improvements with their management of the disease.
Because medical boards, including the American Society for Transplantation and Cellular Therapy and the European Society for Blood and Marrow Transplantation, are coming together to say that HSCT should now be the standard of care, the Marcuccis are questioning when insurance companies will finally recognize it as such.
“The problem in the U.S. with medicine is we’re often five years behind clinically, because with this, too, it’s a procedure, and the FDA doesn’t approve procedures, the FDA approves medications,” Jared said. “All the medications used in HSCT are approved, but they’ll never come out and say this treatment is FDA approved.”
Matia says what’s frustrating is the fact that insurance companies don’t seem to understand the difference between treatments that are experimental and those which are part of trials.
“For years, the insurance companies were saying this was experimental, and it made sense because they still didn’t have the five-year study,” Matia said. “But they didn’t have something that directly compared the other drugs to the HSCT.”
The medication Ivy was first prescribed upon her MS diagnosis, called Tysabri, was pre-approved by her insurance— a medication with an $84,000 annual price tag which Ivy would have to take for the rest of her life. The five-year cost of Tysabri, not factoring price increases, would be $420,000.
The one-time cost for the HSCT procedure is approximately $125,000, and would allow for patients to discontinue taking all other MS medications, so the Marcuccis say it is even more baffling that traditional MS medical treatment is seen as the better option by their insurance.
“They’re supposed to be making sure I get the best medical care,” Ivy said. “But instead, they’re saying, ‘Take this pill first, acquire disability first, and then come to us when it’s too late.'”
Because the stem-cell transplant continued to seem like the best option to tackle Ivy’s MS, the Marcuccis ultimately made the decision to take out a second mortgage on their home to finance the procedure.
On July 17, Ivy was admitted for her stem-cell transplant at Northwestern Memorial Hospital, following chemotherapy earlier this summer.
Now, more than a month after the procedure, Ivy is continued to rest at home in Riverside so as to not compromise her immunity.
“I want other people to get this treatment because it works, and there’s the data,” she said. “I’ve been through it and I’m recovering, and I know I’ll be seeing all of the goodness from it in the coming years.”
Ivy’s parents say that while their daughter’s MS diagnosis was heartbreaking, they are hopeful their story will help the MS community continue to move forward and realize the day when HSCT is recognized as the standard-of-care — or even eventual cure — for MS.
“MS is a ticking time bomb,” Jared said. “The longer you wait, the more advanced it gets and the less well you do with therapies. The ideal case is that if you have it, attack it fast and hard so that you don’t have ongoing problems.”
With her studies at BYU deferred until January 2020, Ivy is also taking this time to advocate for both more awareness about MS and HSCT. She has talked with reporters from the Chicago Tribune and WGN Radio, is active on Facebook forums about both MS and HSCT and is blogging about her experiences on her own website, itsamess.me, to help MS patients of all ages network and find support.
“When I got diagnosed, I had an amazing support system, but it’s lonely,” she said. “I didn’t know anyone my age or older that had MS. You kind of feel this isolation. Even though no one looked at me differently, I felt different.”
And, as if Ivy’s journey in the past year hasn’t been long enough, she is also hoping to become a certified yoga instructor and volunteer with the Multiple Sclerosis Society as both a patient advocate and medical research supporter.
“Just getting diagnosed and going through this has put life into perspective little bit more,” she said.
