Stem Cell Program That Treated Selma Blair Closes Its Doors

Dr Burt and his team are excellent. I wish there more like him. I don't know of a more compassionate and caring doctor. After all who would call back at 2 am on a Sunday morning.

What Burt's critics conveniently fail to account for is that research studies of MS drugs are paid for by profit-oriented drug companies. But HSCT is not a drug, it is a procedure that eliminates the need for a patient to use an MS drug. A typical MS drug provides the patent-holding pharma company with $60,000 to $100,000 of continuous yearly revenue per patient. Moreover, none of these drugs are as effective against MS as HSCT.

Leave it to the damn FDA to pressure a successful treatment regimen to shut down. Sure, it does not work for everyone and to varying degrees on different types of ms. The point is that there are so many successful cases that have been treated in Dr. Burt's program. It has literally given many patients stability,recovery or moderate improvement. What a shame! I sure hope he is able to seed the knowledge to the birth of many more treatment centers.

Fred Hutchinson sent me info in their program with an attached document that pointed out the cost may be 350-550K that insurance won’t cover.

Even though Dr. Burt's clinic is closing, HSCT is offered world-wide. You just need to leave the country.

Dear Sir,
This is very personal for those of us who have had HSCT. Mostly because it saved us from a long, drawn out death. You must have an autoimmune disease and go through this treatment to understand. Autoimmune diseases are devastating and highly debilitating, some more so than others. The disease ravages your life, and slowly takes away your independence. I was 42 and unable to dress, bath or toilet myself independently.
What Dr Burt has accomplished should be shared with the world in a positive and beautiful light. He devoted 24/7/365 to the thousands of patients he has helped. $100,000 for the ground-breaking treatment that has forever changed my life, being hospitalized for 2-3 weeks, is less than my insurance paid for 6 days when I was originally diagnosed with CIDP. Furthermore, those of us who were able to get HSCT at Northwestern have a bond with each other and Dr Burt & staff, which is worth no amount of money. Helping someone at their most venerable time... having the passion and drive to be available to your patients 24 hours a day (3am fever and Dr Burt called me)...
Bottom line, thank you for your article. Please recognize you are writing about and around all of our lives that have been involved. I truly pray that Dr Burt is able to spread his knowledge throughout the US and world to make this the standard of care for autoimmune diseases and MS.

Ed’s opinions serve as bookends around quotes from an article that has now been recycled 3 TIMES. That is more akin to gossip than Journalism. The number of things that the other writes assumed and that Ed has wrong are countless.
Reprinting other sources and simply putting your own spin on it is just plain lazy.
And would all of you stop quoting Paul and referring to him as a stem cell biologist if you aren’t going to ask him any SCIENTIFIC questions?

If Lemtrada works for you, that’s fantastic. It doesn’t work for others, so don’t take a possible solution for others away. Lemtrada is nothing like HSCT, so that’s false. I know MANY in Lemtrada who are doing horribly, so it doesn’t work for all.

Why attack a dedicated doctor? Why do you care? Why not learn from those he treated first? Are you getting money from Lemtrada or something?

Dr. Burt is the most amazing, dedicated doctor I’ve ever had. I had HSCT in March 2018.

No doubt, it saved me. I’ve had MS for 10 years and it just got so aggressive and stopped responding to medications. I was told by other doctors to just keep trying meds that kept putting me in the hospital. Hospital stay after hospital stay. Dude effect after dude effect. Then, they lost hope and told me to just go on disability- which I refused. My life was not over. At one point, I was one 17 medications at 1 time, working full time, a mom and just trying to hold it together. My body and brain were betraying me. My right side was losing control. Not only was I spiraling physically, but mentally and emotionally as well. I’ve actually thought about taking my own life because I just couldn’t handle it anymore and thought maybe it would just be easier to be gone.

HSCT saved me in so many ways. Dr. Burt may not know this because I didn’t have many complications and I was a rather quiet and easy patient...always smiling because I was so used to wearing a mask to hide the hurt. I didn’t realize just how bad I was until I started feeling better after HSCT. My body and brain are no longer attacking me. MRIs are showing no new activity.

Dr. Burt was the only doctor who listened and got me answers. He came by every day. EVERY DAY. I owe him my life. My physical health and my emotional health.

If any of you journalists want to actually sit down and talk about my experience, I’d be happy to. You can also meet my children who almost lost their mother if it wasn’t for Dr. Burt.

It's amazing the amount of effort that goes into controlling a patients options. If you've looked into a treatment and there's scientific research to back it up you should be able to pursue it.

I underwent HSCT at Northwestern under Dr. Burt in 2004. I agree with the others in that he is not only a great Dr., but also very personable with awesome bedside manner, as is his staff. At that time, it only cost me $50,000 or so out of pocket, the hospital paid the bill for the private room I was in for 18 days, and also assisted in housing in Chicago for the 3 weeks of testing and conditioning regimen prior to the 5 days of chemo that wiped out my immune system.

The treatment lasted about 5 years, then I had a relapse and have been on DMTs ever since, the latest being Lemtrada which I just finished round 2 about a month ago). I have been able to stay employed and my physical impairments are minimal (can still ride a bicycle 20-30 miles and walk 4 miles in about an hour) and am 58 years old. I have no doubt HSCT, while not a cure, did minimize the disease.

I’m so furious! Reading about people who had HSCT in 2004! Nobody, no neurologist, no doctor ever talked about it with me until my Neurophysio mentioned it as an aside only a month ago. I’ve now been diagnosed for 30 years. If I had HSCT 15 years ago I might now not be 7.5 EDSS!

I could never afford the cost it was to go to Northwestern for HSCT.
Instead I went to Pirogov Hospital in Moscow, for HSCT for my MS.
I had MS for about 14 years prior and it was affecting my mobility and I was plainly getting alarmed with the losses I was living with.
It is 2 years later and my MS is still in remission.
HSCT should be available for all people with autoimmune diseases that can benefit by it.
It has been available for decades for types of blood cancers and for small cell vasculitis - it should be a human right that we can get this treatment. I only wish I went sooner. It is very sad and very wrong that this treatment is not available to all.

I wish HSCT was available for me, I had to medically retire in November 2017 and I'm in so much pain I go to physical therapy twice a week. It would be great to have some relief, some normalcy back, if it was available for someone like me. . Low income.

Head to Clinica Ruiz in Puebla, Mexico, like i did. $55,000.
https://www.hsctmexico.com/

To be honest though, I'm not seeing life-changing results from it. I went there 16 months ago, and left with 1000 mg of rituxan, too. So with all of that, I will say I haven't had any new disease activity. However, I've also had no lasting improvement to my symptoms. I had a spinal tap at 12 months and my doctor at the NIH recommended I return to medication, so started ocrevus in june.

However, I don't feel like I fell for a scam or it wasn't worth my time. HSCT is still new for MS, including the proper protocol (type and amount of chemo, etc), so perhaps the fact I had MS for 14 years contributed to that, even though I'm young at 32. Many have had great results.

Do your research and this is not the end of HSCT for MS! It's out there, and hopefully Dr. Burt will start consulting with hospitals interested in setting it up.

What Dr. Burt write in response to FDA which convinced them. What i knw, FDA never change its decision once made, but Dr. Burt has been very good at proving himself.

I have had Crohns Disease and Ulcerative Colitis since 1981. I have many resection to where I was down to 120cm of small bowel and half of the large. went thru the STEM Cell Transplant Program of Dr. Burt's in 2008. I was was headed for more surgeries when I was accepted into the program thru Dr. Robert Craig. It was very had since I lived in Dallas and costs me my life savings as my Federal Government Health insurance and the Veterans Administration would not cover it as it was the considered experimental. I got thru the transplant and recovered well. I have had no additional surgeries. NONE! As a recipient of Dr. Burt's program I am more grateful than I can put into words. Dr. Burt is in my opinion an amazing Doctor and awesome Dude! Thank you Dr. Burt and all my best wished for you and yours.

Robert A. Chapman, M.Sc., MCGC

Unfortunately the big pharma companies will not allow this to happen. They only care about there bottom line. That's money money and more money. Maybe in 10 years this might be an option in the United States but I wouldn't hold your breath. Big pharma wants there billions every year.

She is newly diagnosed I believe if no treatment was given, remission would occur.