Help Matt Beat MS with HSCT Q&A

First, I want to express my sincere gratitude for the support we have received as we have launched our fundraising campaign to help Matt beat MS with HSCT. It has been four weeks since our launch, and we've raised almost $24,000!

While we have a long ways to go, it gives me hope that we can help my wonderful husband receive this life changing treatment. Matt has been going through another MS relapse the last couple weeks. While he still pushes through and works hard to take small moments to connect with our boys, the difficulty of coping with MS makes life challenging.

As with anything new, we get asked a lot of questions about this "miracle" procedure that no one has heard of, yet helps provide long-term remission from MS. (It's actually been around as a treatment for MS for over 20+ years now, though it is just now gaining enough support in the US to begin jumping through the hoops for FDA approval.)

While our website has some wonderful information about our family's story and what MS and HSCT are, here are some frequently asked question and answers my husband Matt has put together about HSCT (hematopoietic stem cell transplantation).

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Question: Isn’t this an unproven, radical, experimental procedure?

Answer: HSCT isn’t new. It’s been FDA approved for certain blood and bone marrow cancers for many decades. Research on its specific use for MS began in 1995. Since then, there have been over 7000 published studies on HSCT for MS world-wide. After thousands of patients treated for over 25 years the overwhelming consensus is it’s the only current treatment proven to completely stop MS progression. The only reason it’s “experimental” is because the FDA has yet to approve it for MS despite proven success.

Question: Ok, but there must be some reason the FDA hasn’t approved it yet…

Answer: Currently there are ongoing clinical trials throughout the US with the goal of FDA approval. Unfortunately, they are only looking for approval for patients that have already tried and failed multiple drugs, and therefore have permanent, irreversible damage. Why they are doing this is unclear, but drug companies make a lot of money off these drugs. For example, Ocrevus, a popular high efficacy MS drug with FDA approval, costs about $68K per year. That’s more than the cost of this one time treatment. And that’s every year for the rest of your life. I can’t imagine drug companies want to give that up.

Question: Isn’t it better to try a couple drugs and see how it works before resorting to something this radical?

Answer: One of the biggest factors that determines long term success of HSCT is “treatment early in the course before the onset of significant irreversibly progressive disability”. This is according to a peer reviewed published article by Dr Burt, one of the major pioneers of HSCT for MS. When a drug fails, and they almost always do eventually, that means permanent, irreversible damage has occurred. HSCT cannot fix this, it only halts further progression. Also, at this point, you are older and being young is another important success factor for HSCT.

Question: Doesn’t this have a really high mortality rate?

Answer: This is one of the excuses that has been used for years by governments around the world not to give this procedure approval. The truth is that in the early days of this treatment, the mortality rate was quite high, over 5% in some cases but typically reported as about 2%. However, protocols, patient selection, and procedures have drastically improved since then. If you only look at all patients world-wide who have had HSCT for MS since 2005 (more than 15 years of data), the mortality rate is about 0.3%. That’s about the same as hip replacement surgery or an appendectomy.

What’s more, I am having my treatment performed by Dr Fedorenko, the most experienced and successful doctor currently doing this procedure in the world. In the last 10 years, Dr Fedorenko has treated over 2500 patients and has had a total of 3 deaths, which is a mortality rate of about 0.1%. These deaths were all patients who had highly advanced MS with several other co-morbidities. My chance of death is essentially zero. (See the webinar below on the latest updates on Dr. Fedorenko's approach to HSCT, the presentation is from from minutes 6:09 - 24:35)

Question: Ok, but why are you going to Russia? Isn’t it dangerous? Sounds like some sketchy back alley operation.

This procedure will be done at the Pirogov Russian National Research Center in Moscow (see video below). This is a major government funded research hospital, so it’s not some private clinic. Reports from prior patients, including my cousin, are that it is the nicest hospital they have ever been to and the care is top notch. Dr Fedorenko is the best in the world at this procedure. He has treated over 2500 patients with over a 90% success rate, meaning over 90% of patients reports no relapses 10 years after having this procedure. No other doctor or hospital in the world can say this.

Question: There have been a lot of GoFundMe campaigns out there lately, and I’m burnt out. Why should I give to you?

I’m not going to tell you what to do with your money, but I am going to tell you that this isn’t for me. It’s for my family and my two young children. They deserve a father who can play with them, help them with their homework, pick them up, and take care of them. This is the best chance of ensuring that will happen for years to come.

It’s true that there are people with “mild” MS who don’t have much progression over several decades and are mostly fine. However, MS has a strong genetic component and this runs in my family. Everyone so far who has had it in my family has been hit very hard by it, including some ending up in a wheelchair.

MS also typically hits men much harder than it hits women. As I’m typing this my legs are weak and it’s difficult to stand for long periods of time. Also I’m more fatigued than I have ever been in my life and my hands are trembling. This is despite only being diagnosed for less than a year and it will only get worse without this treatment, with or without drugs.

Since this fundraiser has launched a little over a week ago, I know it has been seen by well over 1,000 people. If just a portion of those people donate just $50-$100 right now, we would have already reached our fundraising goal.

If you are reading this and you are able, please find it in your heart to donate. Our family’s future depends on it.

#MSbattle4hope

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