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News and Opinions about MS, Health & Disability

Overwhelming support for free MS stem cell therapy

on June 26, 2016

An interesting question about whether people would choose to have stem cell transplants if they were free was met with overwhelming support in a multiple sclerosis group on Facebook just four days ago.

But first, some caveats: there was nothing scientific about the sampling, it was 100% self-selecting; it was only a small group with 473 members; and those who gave opinions were somewhat limited in number. I am not trying to blow this out of proportion. It was not scientific but remains interesting. It should alse be noted that the question was asked in a general MS group – not one with any special link to stem cell treatments.

steroid infusionHaving said all that, we can get on.

The question posed was: “If you were given a chance for free stem cell (therapy), would you? Why? Or why not? Explain.”

All answers, without exception, were positive. No-one said ‘No’.

Some replied ‘Yes’ but offered no reasoning but others did give some thoughts on the matter. Just take a look at these examples:

“Yes, depending how they are expanded!”

“Yeah to see if it works.”

“Sure why not? Help appreciated in any way.”

“Yes my husband did a year ago…it worked.”

“Yes I would! I’m not going to give up. God gave me this one body, I’ll keep trying my best at working to make it work  to the best of my ability!!! I wish I knew where I could go in the US to have it done. I’d go!!!!

“In a heartbeat – other health permitting. The ‘why?’ is easy. The vast majority of people who have gone through it in places like Russia and Mexico have been delighted. Of course, there are risks but disease modifying drugs have serious risks too – just check out the worst side effects.

“My husband had HSCT1 with chemo. It was in Chicago. Before he suffered from heat exhaustion, no more. No more MS drugs. He still has balance issues but he was just about bedridden because he fell every minute. He can now play with our kids, before he couldn’t. It’s best to get it done early. So yes we are extremely happy.”

“Yes! If I don’t do something soon I’ll be completely paralyzed.”

“Yeah I’d try it what else could I lose?”2

So, there you go. A complete ‘Yes’ from everyone but do remember it is a very small group. Maybe one or more larger groups would be prepared to ask the same question.

 

 

1 HSCT or, more properly, aHSCT stands for Autologous Hematopoietic Stem Cell Transplantation therapy. This involves harvesting a patient´s stem cells and cleaning them. The patient is then given chemotherapy to kill off faulty immune cells before the clean stem cells are reinjected to ‘reboot’ the immune system.

2 As with any medical treatment (and that includes disease modifying drugs) there is always a degree of risk. However, this would be discussed with a patient before going ahead with the therapy.

 

MSNT strapline copy

 

 

 

 


22 Responses to “Overwhelming support for free MS stem cell therapy”

  1. Hi I suffer from primary progressive MS. My hospital is UCLH . Dr Raj Kapoor

    Amrit
    07951158530
    Pls call me thnx

  2. melissa says:

    how do i get this?

    • Carmen says:

      Hi I am early SPMS I am suffering with chronic pain and bladder dysfunction plus gait abnormality my biggest wish is to have some normal life back would be a blessing to have stem cell treatment in a free trial as I can’t afford unemployed and have small kids still I’m 42 years old time is running out to get treatment please help anyone in any way Thanks God Bless!!

  3. Elizabeth says:

    How can i qualify to try the stem cell therapy?

  4. Debbie Bachman says:

    Didn’t see anything about this or I would have said YES! I’m 57 and totally disabled. I have a grandbaby on the way and I can’t even hold him/her. I’d try most anything.

  5. Cliff says:

    I will love to have treatment done to me. I cant afford it. I pray every day. I wish i could get stem cells treatment for my multiple sclerosis.

  6. Debbie Bachman says:

    Just left an e-mail but it didn’t take everything. e-mail address is dbachman22@hotmail.com. Name is Debbie Bachman.I’m 57 and totally disabled. I have a grandbaby on the way and can’t even hold him/her. I’m willing to try just about anything.

  7. Annette says:

    YES of course.I’m in Australia & it would cost me a minimum of $60K & up to $100K depending where I would go in the world to get it done.

  8. Helen Clark says:

    I would be banging on the Dr’s door to have the oportunity to have stem cell therapy.
    Who wouldn’t?
    I’ve spent the last god knows how long , during this relapse , using a stick.. to not have to think about this awful MS is my dream.

  9. Of course I would I am 62 and wonder how older patients do. Risk vs reward.

  10. Colleen Brawley says:

    YES I would! I’ve been through 4 of the drugs, Avonex, Rebif, Tysabri and now Tecfidera. I’ve also been through 4 times plasma phoresis. Dx a little over 20 years ago and have 3 children and 2 precious granddaughters and a life to live! 48 yrs old and about all I get to do is in the hose but it always hurts!

  11. Virginia Velez says:

    I’m interested in having my mom doing it she really needs to.

  12. carla says:

    How does lamtrada compair to stem cell for ms?

    • Jacquelyn Sherst says:

      MS DRUGS – LEMTRADA
      Lemtrada is administered as intravenous infusions – for five consecutive days initially and for three consecutive days one year later. Lemtrada should generally be reserved for people who have had an inadequate response to two or more MS therapies as the product can cause serious or life-threatening autoimmune disorders , infusion reactions and malignancies. Lemtrada, like Tysabri, is only available from certified prescribers, and patients will be enrolled in a REMS program to ensure that ongoing periodic monitoring will be maintained to detect potential problems. 

      http://www.fda.gov/downloads/Drugs/DrugSafety/UCM426512.pdf (directly from the drug company itself).

      LEMTRADA can cause serious side effects, including: 1.Serious autoimmune problems. Some people receiving LEMTRADA develop a condition where the immune cells in your body attack other cells or organs in the body (autoimmunity) which can be serious and may cause death.
      Serious autoimmune problems may include: thrombocytopenic purpura (ITP). LEMTRADA may cause the number of platelets in your blood to be reduced (ITP). ITP can cause severe bleeding that, if not treated, may cause life-threatening problems. Call your healthcare provider right away if you have any of the following symptoms: eay bruising, bleeding from a cut that is hard to stop , heavier menstrual periods than normal , bleeding from your gums or nose that is new or takes longer than usual to stop , small, scattered spots on your skin that are red, pink, or purple
      LEMTRADA may cause a serious kidney problem, called anti-glomerular basement membrane disease. If this happens and you do not get treated, anti-glomerular basement membrane disease can lead to Severe kidney damage, kidney failure that needs dialysis, a kidney transplant, or death.
      Call your healthcare provider right away if you have any of the following symptoms: blood in the urine (red or tea-colored urine) , swelling in your legs or feet , coughing up blood
      Side effects may happen while you receive LEMTRADA and for 4 years after you stop receiving LEMTRADA.
      Your healthcare provider will order blood and urine tests before you receive, while you are receiving,
      And every month for 4 years after you receive your last LEMTRADA infusion. You may need to continue these blood and urine tests after 4 years if you have any autoimmune signs .It is important to have your blood and urine tested, even if you are feeling well and do not have any symptoms from LEMTRADA and your multiple sclerosis.
      Serious infusion reactions. LEMTRADA can cause serious infusion reactions that may cause death. Serious infusion reactions may happen while you receive, or up to 24 hours or longer after you receive LEMTRADA.
      You will be watched while you receive and for 2 hours after you recive LEMTRADA. It is important that you stay at the infusion center for 2 hours after your infusion is finished or longer if your healthcare provider decides you need to stay longer. If any of the following symptoms of a serious infusion reaction during the infusion or after – swelling in your mouth or throat , trouble breathing , weakness, fast, slow, or irregular heart beat, o
      chest pain , rash
      LEMTRADA may increase your chance of getting some kinds of cancers, including thyroid cancer, skin cancer (melanoma), and blood cancers called lymphoproliferative disorders and lymphoma. Call your healthcare provider if you have the following symptoms that may be a sign of thyroid cancer: new lump, hoarseness or other voice changes that do not go away, swelling in your neck , trouble swallowing or breathing , pain in the front of your neck, cough that is not caused by a cold. Reference ID: 3658409
      You should have your skin checked before you start receiving LEMTRADA and each year while you are receiving treatment to monitor symptoms of skin cancer.

      The most common adverse reactions included rash, headache, fever, nasal congestion, nausea, urinary tract infection, fatigue, insomnia, upper respiratory tract infection, herpes viral infection, hives, itching, thyroid gland disorders, fungal infection, pain in joints, extremities and back, diarrhea, sinusitis, sore mouth and throat, tingling, dizziness, abdominal pain, flushing and vomiting.

      by it’s own clinical trials it has about a 70% chance of no futher MS progression. It is a recognized treatment for those who are finding the other drugs failing or they simply cannot tolerate losing any more ability. It is available and you do not have to spend a fortune travelling the world to get HSCT. HSCT is in the 90% ile remission, 10% may have another exacerbation but again the world is dragging its heels on allowing this as a treatment option.

  13. Sandra Boltman says:

    Hi my sister is a MS patient for15 years, she is from December 2015 in a wheelchair. Is there any way for her to qualified for this stem cell treatment. She is will to try everything, but she suffer at the moment because she can’t even used her hands.

    • ian0811 says:

      Hello Sandra, I suggest you join an HSCT group on Facebook to find out more information before contacting a clinic to see if your sistebr qualifies medically.

  14. Jacquelyn Sherst says:

    I believe that pharmaceutical companies do not want to see HSCT take off. It was known about for years and swept under the rug more times than enough.

    A person taking MS pharmaceutical drugs is looking at only 30-40% efficacy at best by their own drug trials. Lemtrada is 70% but is such a problematic drug (high degree of side effects for several years following – some are deadly) when it was labelled Campath it was barred by the USA’s FDA. They only allowed it on the market after it had a complete disclosure of all side effects with the drug.

    In Canada we have NO active non-ablative stem cell trials.

    We had a small, extremely strong ablative clinical trial which saved the lives for 24 people with rapidly degenerative MS. Because the conditioning was so strong, one patient died. The way the results were presented was – yes it can put “only some” people with MS into remission and HSCT is a very dangerous procedure. Both those statements though true for this miniscule trial – overall are untrue, because they are only based on the heavy chemo conditioning they used in that specific treatment. My own mother, in fact, died from too heavy a chemo treatment for cancer. it is not the procedure that is dangerous – it is how the procedure is done. People can die from too much anesthesia too. It is reporting like this that slows down HSCT being mainstream as a recognized free treatment choice. Russia has treated 550 people this April 2016 since they opened and no-one with MS has died from this procedure. Care taken in reviewing the patient’s ability to withstand treatment (ensure they are otherwise healthy)before including them and skill with the correct usage of non-ablative conditioning HSCT has less risk than most all MS drugs and procedures on the market. The only risk is for a short duration after the procedure until the new immune system gets working. A lot of that depends on the patient being prudent to follow directions.

    HSCT has been available for patients with Multiple Sclerosis for some time in other countries. Non-ablative autologous HSCT is available worldwide.

    http://www.hsctstopsms.com/hsct-facilities-worldwide/

    Even the US National Library of Medicine, National Institute of Health recognizes this treatment:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4715306/

    http://www.ncbi.nlm.nih.gov/pubmed/25711670

    The most likely reason that HSCT for Multiple Sclerosis has not yet been FDA approved is because USA has private insurance for pharmaceuticals and they are getting the pharmaceutical companies to pay the $125,000 USD to pay for the treatment in Chicago.

    The prospective patient signs a form that gives permission to Feinberg School of Medicine at Northwestern University to represent them on their behalf and share their clinical trial results to the insurer.
    When it costs about $60,000 per annum for private insurers to pay for approved MS pharmaceuticals that do not have high efficacy rates (30 -40% reduction posted from their own trials) and contrast theses costs against the one time cost of HSCT as they see the high remission rates for NON-ABLETIVE HSCT at 90%, with MS markedly slowed to needed little or no further treatment on the 10% of patients that have any relapses afterwards. They currently treated over 200 people that way, with the government not having to pay a cent. $60.000 X 17 years – a patient would cost over $1M for pharmaceuticals alone and most patients that have had MS for 17 years also have other costs due to cumulative disabilities – some even need full time care. Contrast those costs against a one time cost of $125,000. They will save money just shortly after 2 years and save three quarters of a million dollars per patient – minimum. When it has gone to court some US States have forced the insurers to pay for this treatment. This has been quietly going on for years:

    It is already now recognized by many States in the USA:
    https://www.facebook.com/notes/the-biggest-ms-network/hsct-insurance-providers-coverage-hematopoietic-stem-cell-transplantation-hsct-/814162248595523/

    In 2008 to 2014, partial list only, of 63 insurance companies in the US paid for this treatment. Please note that this is not a complete list, but the following companies have provided Hematopoietic Stem Cell Transplantation (HSCT) for Autoimmune Diseases coverage for services provided at Northwestern Memorial Hospital by Dr. Richard Burt.

    Also note that some US States court-ruled the insurance companies to pay.

    USA:

    http://www.stemcell-immunotherapy.com/audio/Hematopoietic_Stem_Cell_Transplantation_for_Multiple_Sclerosis.mp3 works well for Relapsing Remitting – not just Aggressive MS. 150 patients (new interview with Dr. Burt)
    non-ablative MS – is very safe unlike ablative (ablative destroys the bone marrow – non ablative does not). You do not need to destroy the bone marrow to wipe out the portion of the deviant MS autoimmune system.

    https://www.youtube.com/watch?v=n-vo-n5awjk Dr Burt. Feinberg School of Medicine, Northwestern University, Chicago (been working on this for the last 30 years).
    http://www.stemcell-immunotherapy.com/pub_vid.html shows all the autoimmune diseases Feinberg they treat with HSCT.

    They are on large 3rd tier, very open clinical trials currently. It is felt it may likely become FDA approved by 2020.

    However, there is an off-label use for Chemotherapy when using non-ablative conditioning which has less than a 1% mortality rate. This is a commonly recognized and allowed treatment for patients with leukemia, having been regularly performed since the 1960s on patients up to the age of 65. The safety of this procedure has been highly improved, safer, over the decades. Over the years they have found better efficacy with less toxicity. This treatment STOPS disease progression for many people with autoimmune disease, especially MS. It was, in fact, discovered when some patients who had cancer and who also had an autoimmune disease, found that their autoimmune disease disappeared after their cancer treatment.

    I was saddened to see Dr. Freedman’s findings as they used a very strong harsh ablative conditioning. Though it was successful, when reported it paints all HSCT treatments as dangerous. We only had a very small drug trials using this procedure on a very small segment of people. HSCT, should not be blanketed by this one type of heaving condition and not be listed as experimental treatment as it is definitely not new technology and has already been used on some patients for decades. This clinical trial in Canada had an extremely heavy ablative conditioning which is why there was higher danger and side effects. Even so, it saved the quality of lives for 24 patients, which is much more than the rest of the population with MS can currently look forward to. However to compare non-ablative HSCT to this treatment is misleading to say the least.

    In the United States, however, after President Obama’s executive order 13505, which was basically “Removing Barriers to Responsible Scientific Research Involving Adult Human Stem Cells”, there are now large phase 3 national drug trials, at Northwestern University in Chicago. This treatment has results and puts patients with MS into remission, stopping 91% of the disease from proceeding further, with the remaining 9% having their disease so slowed that it is many years before they need to depend on drugs again.
    https://www.youtube.com/watch?v=cpNu9aFOHdc&feature=share University of Chicago.

    The HSCT part is the important part of putting MS into remission. These patients had the chemo part without a subsequent stem cell transplant. The bone marrow was not ablated – so these people just regrew their immune system.
    http://www.hopkinsmedicine.org/news/media/releases/hicy_drug_regimen_reverses_ms_symptoms_in_selected_patients

  15. Linda D. Bunch says:

    Please let there be something we can do..I need this stem cell therapy. The Avonex is not helping.. The last 2 years I have gone done hill. I have had MS since 1995, and would like answers and help. I try to stay positive, but when I fall (which is daily) it’s hard to do. I don’t want that wheelchair coming near me..

    • ian0811 says:

      Hello Linda, the availability of HSCT aside, staying positive is important and, yes, it is difficult to do so when falls happen regularly. However, I would say that a wheelchair need not be feared if you regard it as a tool. I have a motorized one that gives me the ability to do things I could not otherwise do, such as go shopping in a supermarket. It gives me greater independence. However, I am not dependent on it for very short distances and never use it at home. I regard myself as ‘wheelchair enabled’.

  16. Hi am mohammed aharaz am from kerala am a multiple sclerosis patient I want to know more about this plz reply me

    • ian0811 says:

      Hi, although the idea of free HSCT is very popular, to the best of my knowledge, outside of clinical trials it is only available free to residents of the UK and then only under strict conditions.

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