Saving Mark Rosenthal
MS is an autoimmune disease where a person’s immune system attacks itself. In 2013, about 2.3 million people worldwide had MS and about 20,000 died from it.
Hematopoietic Stem Cell Transplantation (HSCT) is a form of immune suppression but unlike standard immune-based drugs, it is designed to reset rather than suppress the immune system.
“I’ve had a lot of people say, well isn’t HSCT experimental? Well no, not to us. We call it a cure. Because if it stops your progression and you’re no longer getting any worse, we call it a cure,” he said.
He and his wife will fly to Mexico on April 24, and he’ll be there for at least 28 days if there are no complications. Rosenthal said he and his wife plan to take videos and post to Facebook to update people every step of the way.
“The first thing they do is they give you a special kind of chemo. Most chemo is designed to target cancer cells; this chemo is designed to kill your immune system, so you’re on the verge of death, I almost want to say,” Rosenthal said.
Before you do that chemo, they harvest your stem cells. Rosenthal says they give him a drug that gives you more stem cells than you normally would have and then they harvest those stem cells. “Even with MS, there’s nothing wrong with my stem cells. So they can harvest them. So after the chemo and they see you have no immune system, you get your stem cells back,” he said.
That’s a nine-day isolation period where no other humans are allowed to be with you – not the doctors, not the nurse – you cook your own meals they have preapproved.
Rosenthal believes HSCT will stop 95% of the people that have MS progression in its tracks. He says there are 91 people on his Facebook page that have had HSCT, and the treatment stopped progression in every one of them. “But I won’t just come home and say, hey, you’re cured. I’ll have to exercise every day, I’ll have to get five more transfusions of a high-dollar drug every two months; I won’t return to work anytime soon.”
When he flies back from Mexico he’ll have to wear a mask on the plane and will likely be bald from the chemo. “You’re going to think I’m a terrorist,” he joked, adding that losing his hair is the least of his concerns.
“You can take all the hair on my head and my body, and as long as I’m alive – I don’t care!”
Coming home after the treatment has required a bunch of work and sacrifices up front, and his home needed plenty of preparation to be ready and safe for him upon his return.
“When I come back I can’t have any infections – I have to be infection-free until my immune system comes back,” he said. “I’ll probably be a little paranoid when I come home.”
Of course that means isolation – on average the “safe zone” for being around healthy people is 3 months. He won’t be able to be around his kids for at least a month after he returns on top of the 28 days in Mexico. His wife – who will be his caregiver when he gets back to the house – will have to wear a mask for the first couple of months.
He has to give up his dogs; have some pre-emptive dental work done. And because they are “resetting” his immune system, he’ll eventually have to retake every vaccination he’s ever had all over again.
But he does think he’ll have an advantage in his recovery, because he is younger than the average person who undergoes HSCT. “I’m 37 years old and they’re usually over 50 before they can do it or have the money to do it,” he said. “I’m hoping to be the best one yet to come back and get better faster than anyone else.”
Expenses keep stacking up
Just because he raised enough to pay for the treatment doesn’t mean his financial concerns are behind him – far from it, in fact.
“God, the bills just don’t stop! I don’t want to sound ungrateful for the money I’ve already gotten because that’s a miracle, but I will need more,” he said. “So if people want to help with the ‘when I come home’ part of it, I need all the help I can get.”
He noted he’s pretty much done in the insurance business for a while, and has been for about the past year. He does have some residual income, and was recently approved to begin receiving SSDI benefits. But the credit card debt has already been racked up, and more expenses are on the horizon.
People can still help by visiting www.SaveMarkRosenthal.com.
The money problems are real, but so is Rosenthal’s hope for beating MS. His future is looking much brighter than it was a year ago.
“Here I was, to be honest with you, thinking about shooting myself and giving up all hope to here’s what you need to do, and fighting to do it,” he said. “Having that done is a miracle.” He said he figures there are close to 8,000 people who have helped him in this fight, and he now feels a bit like an “investment” to those people.
“I want you to know that I’m going to fight like hell. I appreciate what people have done for me.”
When he comes back and recovers, he has vowed to “pay it forward” by helping other people with MS and fighting for the U.S. to embrace the potential of HSCT treatment and get it past clinical trials.
“Use me as an example. Here I am with very progressive MS, and they’re going to stop it? That sounds impossible. If it will work for me, it will work for anybody,” Rosenthal said.
“All this has been a miracle. We have done the impossible already,” he said. “We’ve still got a big fight coming on, but I’m ready. I’ve got my hope back. I’ve put everything I have into this.”
Brian Anderson is the Executive Editor of Insurance Forums.
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