HIGHLAND — Imagine that you had multiple sclerosis, and were going blind and losing your ability to walk, but you had an opportunity to stop or even reverse the progression of the disease.
The only catch was, you would have to pay $50,000, spend a month in Mexico and take part in a treatment that's still considered experimental in the United States.
Would you take that chance?
For Craig Witkowski, the answer is yes.
The 34-year-old Highland man is traveling to Mexico later this month, with his wife, to have his stem cells transplanted in the hopes of halting the multiple sclerosis that has been slowly stealing his abilities over the last nine years.
"This was the only hope," he said. "When you go to the doctor, they tell you there's no hope. Other doctors say, 'Take medicine and let it be where it's at.' I'm young. I'm not ready to quit yet."
Witkowski was diagnosed with multiple sclerosis at the age of 25, after he started seeing unexplained colors. He had optic neuritis, an early sign of the disease, in which the body's immune system attacks itself.
His vision kept deteriorating, and he struggled with fatigue, to the point he had to quit his job as a union carpenter. He went on to work for a popcorn company, manufacturing the machines, but even that got to be too much for him.
He tried different medications — the disease kept advancing. To get around, he now uses a cane, or holds onto walls or people so he doesn't fall.
In late 2017, Witkowski was accepted into a stem cell transplant trial at Northwestern University Feinberg School of Medicine. But when his wife's insurance changed in early 2018, the new company, Homewood-based Benefit Administrative Systems, declined to cover the procedure, the couple said. (Requests for comment from Benefit Administration Systems, also known as BAS Health, went unreturned.)
By the following year, when Corrine Witkowski's insurance switched back, Northwestern told Craig he was no longer eligible for the trial, that his disease had progressed too far, the couple said.
Then, on Facebook, Corrine learned about a Mexico clinic that was doing the transplants. The thing was, the price tag would be $52,400. And Craig would have to be there 28 days.
The treatment, officially known as a hematopoietic stem cell transplantation, removes blood-producing (aka hematopoietic) stem cells form the patient's body and stores them while the person undergoes chemotherapy, to sap their immunity. Then the cells are put back into the patient, in the hopes they reset the person's immune system.
A preliminary study published in the Journal of the American Medical Association in January found the treatment to be more effective than the current medication therapies for multiple sclerosis. Still, the transplant is considered experimental in the U.S., as it hasn't yet been approved by the Food and Drug Administration.
Two Region residents have experience
Recently, through a friend, the Witkowskis were introduced to Peggy Lawrence, a Crown Point preschool teacher who in April 2018 had the procedure in Mexico. She reassured that them it was legitimate — and that, for her, it worked.
Lawrence was diagnosed with multiple sclerosis in 1994. Her disease didn't get really bad until about eight years ago, when her muscles started contracting, her legs got stiff, she had trouble keeping her balance.
She tried all the available medications, but her condition continued to worsen. She attempted to get into the Northwestern study, but was turned down because she was too old.
Then, at her doctor's office, she was introduced to Lynn Fernandez, a Cedar Lake woman who'd had the stem cell transplant in Mexico. She also hadn't qualified for the Northwestern trial, because she didn't have active lesions, and learned about the Mexican option on Facebook.
"It's scary, going to another country," said Fernandez, a married mother of one who is on disability. "I didn't know anyone prior to me, personally, who did it. I did not know if it was legitimate or not, or what to expect.
"It's expensive, but then you're like, 'What do I have to lose?' Like money, but ..."
She decided the chance to have a devastating neurodegenerative disease halted was worth the gamble.
She held several benefits to raise the money, and then in October 2016, she went to Mexico. The clinic, Clinica Ruiz, took her to see a church made of gold, a volcano, restaurants, to make the trip easier.
"I'd say you enjoy life more," the 42-year-old said of the results. "You're not choking every time you eat. You're not falling down as much. The brain fog — you can think clearer. I'm not up all night spasming."
Lawrence said she had similar results. She also afforded the surgery through fundraisers.
"My walking's much better, and my balance is much better. My energy's better," said the 62-year-old, who has two adult children and two granddaughters. "So along with stopping the progression, I've gotten bonuses. I don't use my walking stick half as much as I used to. I can do more physically with my grandkids, which is so wonderful."
Heading to Mexico
These experiences gave the Witkowskis peace of mind. Now they just have to find the money for the treatment. Corrine's aunt has organized a benefit for them Saturday; they brought in about half the money at a prior fundraiser. They say their family, friends, neighbors and Corrine's job have all been greatly supportive throughout this process.
"He honestly can't afford any more progression with the disease," said Corrine, 34, a social worker.
"It's really taken a toll on him in so many ways, emotionally, even though he'd like to deny that part of it. I don't know who wouldn't be emotionally upset by it. He likes to work. He wants to be out and about. He was social before. He does socialize, with the fundraisers, but it really exhausts him. Going out and about in a crowd is difficult for him. It's a struggle to really do daily functions. He does put his best effort forward. He's really strong, still manages to exercise during the week, but takes him a long time to recover from that.
"It's such a daily struggle. Even though he tries to really be positive around others. It's not always easy at home, to be positive.
The couple met while they were students at Grimmer Middle School in Schererville; they went to the eighth-grade Halloween dance together. They reconnected at Lake Central High School, started dating their senior year. They got engaged in 2011 and that year bought their first house. Shortly after, Craig was diagnosed with multiple sclerosis. They got married in 2013.
These days, Craig mostly stays inside. He is sensitive to loud noises and the heat. He can't read; the words jump around on the page, he said. He listens to a lot of podcasts, Joe Rogan mainly (Craig is going to Rogan's comedy show Friday in Chicago).
"When there's hope, that makes it easier," Corrine said. "Without the Mexico thing, it would be really devastating."