HSCT FACILITIES WORLDWIDE

84 thoughts on “HSCT FACILITIES WORLDWIDE”

1. I am from Alberta Canada,. Would love to have a second chance without MS.
   Can I be part of a trial ..somewhere in Alberta canada
   .

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   • Hi Barbara, I am no expert on the trials. I just post the information but you should join the face book group “Hematopioetic Stem Cell Transplant – MS & Autoimmune Diseases”. Post the question there and I am sure someone will be more acquainted with the options available to you! Good luck x

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2. I would love to be part of the trial?
   Is there anywhere in Alberta I might start looking.

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   • I think Ottawa is the only place in Canada that has HSCT for MS and AI Diseases and the parameters for the trial are quite narrow. See my comment above and do that.

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   • I see this is an old comment, but if you are still looking you might try Dr. Jumani and Dr. Burton at Foothills Hospital in Calgary.

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   • I had a procedure done in Puebla, Mexico during the month of March. Best decision I ever made and I would recommend it to anyone suffering from MS or any other auto immune condition.

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     • I would love to hear more about how things have changed for the better since treatment.

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       • Hi Mandy. The Facebook HSCT groups are the best places to talk to people who have had HSCT Treatment. There are numerous groups. There are groups for each facility as well as veteran groups and groups that are country-specific. Here you can talk to people and ask questions. Just put HSCT into the Facebook search. Good luck 🙂

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         • Thank you for updating with a few comments. I am looking for more recent info and have requested to join the FB page. I look forward to seeing if I will qualify for treatment. MS since 92, DM drugs for years, and probably a 6 for that scale of ability.

         • Hi Janet,
           Good luck. It is good to see what the treating specialists have to say as they are best to decide whether it is worth your while. I know that a lot of facilities focus on RRMS as having the best outcome, and many will only treat patients within 10 years of diagnosis. Sending you good vibes and wishing you the very best outcome.

     • I did it in 2017, my best decision too!

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3. I am also from Canada. I am a mom with three kids still at home going to school, and post secondary. I worked all my life but I am now on disability. My MS does not look dramatic but I do have a brainstem lesion, and I have lesions on 6 of my 7 cervical neck spine areas, also thoracic lesions – last MRI said thinning at T5. If T5 goes I will be a paraplegic. My brain is not so badly affected so other than moving slowly, sometimes staggering, tripping, I look fairly normal but am I ever suffering on the inside. I constantly feel like I have a cement block squashing me down. Sometimes I feel like if I fall asleep I may not wake up. I am in constant pain from my lesions on my back. The brainstem lesion I believe is the cause of my hearing loss. I get Uhthoff’s so badly I can barely see – everything becomes a milky white fog and I lose the ability to walk. I am trying to get into Ottawa, but it does not look good. So if that fails I will try to find place that offers HSCT for pay. If I don’t go I know I am facing wheelchair soon, adaptive equipment and as I get worse, and I will, I will need palliative care which will cost us a fortune so… The less impact on my family, my children will be HSCT, though because I am on disability that will be a huge financial blow. At any rate, this does not cost anything but I am trying to get this petition going because I don’t think when people can get this treatment for cancer, why it isn’t a readily available choice for MS. Please sign this petition to put pressure on (Canada – Health Canada, and for the USA – FDA) to get this to be an approved treatment so we don’t have to be jumping through hoops and bankrupting ourselves, especially when it saves millions for insurance drug costs. https://www.change.org/p/provide-hsct-for-multiple-sclerosis-as-a-recognized-treatment

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   • Just came across this…has there been any updates concerning it

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     • No Sorry Angela I have heard no more regarding this.

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4. There building a new hospital in vancouver,bc. Will there be a facility there

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   • Hi Laurie, I have no information on whether this will be available at the new hospital in Vancouver. The only treatments that I know of in Canada are trials. Please see the HSCT facilities list to get contact info to find out. Good luck.

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5. Hi, everyone! Just a clarification, MakatiMed uses a MYELOABLATIVE approach. 🙂

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   • Sarah I believe it is classified as Non-Myeloablative. They have a unique protocol which falls somewhere between the two, but is still
     officially classified as Non-Myeloablative.

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     • Hello,

       Has anyone been to the makati medical centre for HSCT? I am extremely keen to, but not sure how best to contact them and start the process. Ideally Id like to go for the Myeloablative protocol. The contact details dont see up-to-date?

       Regards, ms_interest

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       • There is an MS group for the Philippines. There are a number of former patients on there who respond to questions. Here is the link: https://www.facebook.com/groups/philippineshsct

         CARL

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         • Thanks, Carl I am sure people will find this information useful!

     • I wish you the very best of luck Jacklyn! x

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6. I was wondering if anyone has had this
   procedure done in Mexico? If so,
   would you mind telling me where,
   who the doctor was and what the
   total cost was? I was diagnosed
   with MS in 2003 and am trying to
   find a safe and cost friendly place to
   have the procedure done.

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   • Yes here is the place:http://www.bing.com/mapspreview?&ty=18&q=Clinica%20Ruiz%20Puebla%20Puebla&ss=ypid.YN9001x5200969&ppois=19.0577602386475_-98.2095031738281_%EE%80%80Clinica%20Ruiz%EE%80%81_YN9001x5200969~&cp=19.05776~-98.209503&v=2&sV=1

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   • Hi Salome, I am not the arbiter for treatment. This was set up to help people get information. You would need to approach the different facilities and also find out if there are any trials taking place. I wish you the best of luck.

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7. Is there an advocacy group for HSCT to promote insurance coverage?

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8. I have been suffering from MS for almost 30 years. I am Swedish and woud like to have a second chance with MS.
   I would like to be treated privately and pay for it.
   Please DO reply. F.Estakhri

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9. Can anyone tell me about aa maximov russisa.is it reliable?

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   • Hi Deepak yes it is very reliable – well over 500 have been treated there….it maybe closer to 1000 now. There is a group on facebook for people that have been and want to be treated there: Russia HSCT for MS & Autoimmune Diseases
     You should join in to get info.

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10. Hello all,

    did i do something wrong?
    english is hard ha
    i just wonder if the non mylo is also affecting fertility in makati med hospital…
    if so i’ll have to freeze semen i guess….
    please let me know.
    thx again.

    erwin belgium

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    • Hi Erwin, yes you are advised to freeze your sperm…especially if it is Myelo. Dr Fedorenko in Russia prides himself on preserving peoples fertility but he does Non Myleo……

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11. Any facility in India or Pakistan

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    • Hi Raza, no unfortunately the Indian facility closed a couple of years ago and as far as I aware has not re-opened.

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12. I am very interested in receiving HSCT treatment to put MS behind me..

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    • Hi Dianna,

      Please go to the Facebook page HSCT Awareness where you will find many people who have been treated and who are waiting for treatment dates. There is a wealth of knowledge, information and advice available. Good luck.

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13. Dear All,

    I am wish to go for the Myeloablative protocol. Does anyone know what hospitals have this (I know Heidelberg in Germany does), any others?

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    • Hi Sam,
      Italy does Myelo, and the Philippines does a version that is Myelo based, but has a unique protocol. I think Singapore also does Myelo. If you look on the Facilities list it should state which type each facility performs. You will also find contact information so that you can e mail directly. I should add that most of these facilites require that you show active inflammation and have proof that you have failed one or two DMD’s. Good luck!

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      • Many thank you for your help and advice. I have had RRMS for around 10 years. The last year I had MRI that show very active lesions and my walking is harder. The problem is that I have refused conventional DMT’s. Im worried this will be a problem, but I need to go for HSCT before things get worse. There doesnt seem to be contact info for makati philippines?

        Regards, ms_interest

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        • Hi Sam, yes they are the last facility on the list. Have a look again and contact them. Good luck!

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          • Many thanks. I did contact them, and their response was prompt and helpful. Their info says they do offer Myeloablative protocol. Im just panicking and scared that I will be refused, because I have refused conventional DMT’s (as evidence and data suggests that these arent really effective against gradual but sustained deterioration). I have lesions, the MRI shows these, but have yet (luckily) avoided a major relapse. So scared I will be rejected, I desperately want to get it done. Previous DMT’s shouldn’t really ‘impact’ or influence HSCT criteria 🙁

14. I’ve recently seen HSCT being done in India, is this a recognized or reputable place ?????

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    • Hi Raul, we are still researching the facility in India. As soon as I am happy that it is reliable and reputable I will post it on the World wide facilities list.

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15. Hi Terri, you should apply to Mexico, Russia, Philippines. You can find the details on the facilities list. They can independently access your suitability for treatment. This is the best advice that I can offer. Each case is different. Your EDSS is a factor in this. I wish you the very best. Tina X

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16. I’m going to northwestern in January for an in person evaluation. If I’m not fully accepted I will go to Mexico and I’ve already booked a tentative appointment. Has anyone had the procedure done? Does anyone have further insight on if it truly stopped progression and if myelo is more effective. Thank you- georgia

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    • HI Geogia, there are thousands of people that have had the procedure. I suggest you check out the HSCT forums on facebook. There is one specifically for Northwestern I believe. But there is also HSCT Awareness and many others. You can ask questions of Veterans and pick their brains. It is an invaluable source for someone like yourself who is weighing up the options. I presume that you are RRMS and have taken at least 2 DMD’s. The question of whether Myelo is more effective is a difficult one. Since the beginnings of HSCT the procedure itself has become more and more sophisticated and myelo in my personal opinion is no longer necessary. Dr. Federenko in Russia treats each patient specifically within the parameters of their disease. As we all know, everyone has their own personal version of the disease and he has become adept at recognizing and utilizing this to maximize the effectiveness of his treatment which is non-myelo. However as far as publishing the results goes, the medical establishment has strict rules on how this information is fed into the mainstream, so sadly it may be many years before we see tangible evidence of the efforts of pioneers like Dr. Federenko. Good luck with your application at Northwestern.

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17. I was just looking at all the countries that are doing HSCT stem cell treatment for MS. I was wondering if the 1 in Mexico has a time limit and if your success chances go down if you gone from RRMS to SPMS in a span of over 15 years? What are the side effects, other than being out MONEY and time? This procedure still interests me TREMENDOUSLY!! But I don’t feel like I have the whole story. I welcome any info or personal experiences that did or didn’t work.

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    • Hi Susan, yes it is true that long term diagnosed patients are generally less likely to benefit from HSCT. There are many factors that come into play and as we all know no one person’s MS is the same as anothers. Many people have experienced success with a 15 year diagnosis. The best way forward would be to contact the facility that you are interested in and ask them to assess your history and advise on whether they feel you would be a good candidate? How old are you and what is your current EDSS?

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18. Can someone please tell me how long you have to wait before having HSCT done again. My friend had it done in 2016 in the Philippines but when he returned he got, he got meningoencephalitis and has gone backwards. He is thinking about doing the treatment again. Has anyone had HSCT done more than once?

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    • Hi Violet,

      I think I have seen you previously on the HSCT forums and I remember your friend. I cannot remember his name. I only know of 1 person that has had the procedure done twice, and I am unaware of her condition since. It is not common but also not unheard of. I would imagine that it is dependent on the type of HSCT performed, and I believe that in Philippines that is is a procedure that is close to myleo than non-myelo. My advice would be to decide on a facility and message them directly to explain the situation and get the advice from the horses mouth so to speak. However if his EDSS has deteriorated I would imagine that it would be difficult to get a facility to perform the procedure again. What is his EDSS?

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19. I have been accepted to have HCST in Artemis Hospital IN iNDIA cost US$30600 total for myself and my attendant for about 31 days in Hospital
    I have only heard good reports from here, have you heard of any bad reports?
    I also noticed it was not on the list why not?
    Cheers
    Graham Cooper

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    • Hi Graham.

      The reason India is not on my list is that a very dear friend of mine died there after being inadequately assessed for treatment. Equally another fatality occurred, both in the first 6 months of the Centre opening for HSCT treatment of AI diseases. There were other issues that became apparent which were disturbing. I myself and several other HSCT groups do not advocate treatment at this facility which is why I have not included it. I wish you the best with your treatment and sincerely hope that they have circumnavigated the problems they were experiencing when my friend Arpa sadly passed away.

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20. Has anyone with PPMS had itreatment in Clinica Ruiz in Mexico?

    I am considering the facility for treatment of my MS

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    • Hi Ron yes lots of people have been treated in Mexico. If you go to face book you will find a group that is set up for HSCT in Mexico at Clinica Ruiz. You can interact with people who have been treated there and who are intending to be treated there so check it out! 🙂

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21. I love that you made this page. This page is what led to me finding out about hsct and also to dr Burt where I’m going in July. I was researching how to stop and reverse ms and this page popped up.

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    • Thanks Georgia, so happy it helped you!That was the reason I set it up. I am about to add more information for others for whom HSCT is not an option. I really wish you the very best with your treatment with Dr. Burt. 🙂

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      • Why is India not listed?

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        • Hi Christa,

          India is not listed because myself and several other groups does not advocate this facility! A dear friend died here during treatment due to neglect and there have been several other issues and at least one other death. I have addressed this before.

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22. Hi

    I am from South Africa. I just noticed that South Africa also offers the treatment. However, my daughter was diagnosed with MS in 2012 when she was 13. She is now 18. She has been on Betaferon, Copaxone and Tysabri. The latter for 2 years. She has had a number of relapses and new active lesions since on Tysabri. Our neuro has now suggested Lemtrada, but according to him, it is not available in South Afica.

    My question is, is my understanding of HSCT in fact the use of Lemtrada? How successful is South Africa with this treatment? Do you have the cost by any chance? We have been told that it is around 1.2 million Rand (95 000.00$)

    Kind regards

    Antoinette

    Please advise.

    Thanking you

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    • Hi Antoinette,

      I tried several times to contact Prof Novitski but had no luck so I am not sure whether this facility is still up and running? I do not know the cost as I have failed to reach them to update the information. Lemtrada is a pretty standard treatment World wide so I do not understand why it is not available in South Africa. It is a chemo drug and I personally have a problem with continually taking it, as the side effects long term are still not known. The good thing about HSCT is that it is performed and completed. You do not contiunue to take the Chemo drugs once it is completed. Also they do not use Lemtrada for HSCT. Generally they use Rituximab or Atg. You might also want to check out the Coimbra High Dose Vitamin D Protocol since she is so young.

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23. Thanks so much for the response! Much appreciated.

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24. I understand that treatment for PPMS is much less successful, but what is the general consensus regarding myelo vs non-myleo for PPMS. I know the more readily available clinics do non-myleo, but if the best treatment for PPMS is myelo, how would someone find a place to treat them with that protocol? Thanks so much!

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    • Hi Randy,

      I personally feel that the thinking behind myleo being “stronger” is a bit outdated. procedures have come a long way and are more tailored to each person. A lot more depends on your particular diagnosis. When you were diagnosed, what your EDSS is etc which will give an indication of axonal pathway damage and some idea of how you would respond to the treatment. Most places that are prepared to treat PPMS do no offer myelo. You may possibly try the Philipines. I believe their treatment is more aligned to myelo than non-myelo.

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25. Can you please include Lithuania, Vilnius, Santaros Klinikos http://www.santa.lt/index.php?option=com_content&view=article&id=2345&catid=192&Itemid=429 on the list? I am the first international patient here, treatment and team here are amazing, I am very grateful! Doctor is Valdas Peceliunas, valdas.peceliunas@santa. It is non-myelo, they use Chicago protocol. Price is 44 000€

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    • Hi Inese,

      Yes I can add but I need more info? Do they treat international patients? What is their criteria? How much is the treatment for how long and is it in patient or what. Please be more specific. If you look at the list I need all of that info. Thanks for letting me know.

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26. Do you know anything about Artemis Hospital in India?

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    • Yes a good friend of mine died getting HSCT there. They have had other issues. I cannot recommend this facility which is why it is not on the list.

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27. Do you know anything about Mexico? Clinica Ruiz.

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    • Hi Andrea,

      Yes Clinica Ruiz is recognized and high quality facility. There is a facebook group that is dedicated to this facility if you look on facebook. You can talk to people that have been treated there and who are going to be treated there.

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28. Pingback: Stem Cell Transplants Get a Shot in the Arm - The MS Wire

29. Can you please add the Cleveland clinic and it’s price? I know it’s treating people off trial now but don’t know the cost.

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    • Hi Bob I will try and look into it, but if you have the information or a link to the Clinic please send it over and I can investigate.

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30. I went to Russia in 2015 and the price was $45,000. As of today the price is approximately $65,000. A complete updated list of facilities and prices is needed. Thanks!

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    • Hi Steve. Thank you for letting me know this. I am an independent person and the site is free. I have frequently mentioned that if anyone has any updated information then I am happy to amend and update it on the facilities list. I will correct this now, but I do not have the time to call every facility and check. The contact information is correct, so people can follow up if they are interested in treatment.

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      • Thank you. I didn’t mean to be pushy. I appreciate your work.

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        • Thanks, Steve, I appreciate that. I did update that info. Have a great day! 🙂

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31. I would like information on the Cleveland clinics and it’s off trial hsct treatments.
    Thank you

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    • Hi Bonnie, as I have mentioned several times before, this is a free site! I personally do not have time to research every new clinic or what it offers. Most HSCT Facilities are aware of my list and contact me for updates. On the other hand, many people provide information for me to add to the list if they become aware of a new facility. I am more than happy to do that. If you find out about the Cleveland clinics please share it with me and I will be more than happy to add it. Thank you.

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32. Is the stem cell center in Panama safe?

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    • Hi Kuldeep, I have no experience of the facility in Panama. I don’t think they perform HSCT, I believe it is a different protocol that is used there, but I have heard many have experienced improvements after getting treatment there!

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33. Just found your page while researching HSCT. Looks like a great place start. Thanks!

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    • Hi Adrian, I hope you find the info useful! Good luck with your health. Do check out the Coimbra Protocol also, as many have found it a miracle, and it is less invasive and a lot less expensive than HSCT 🙂

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34. Hello! I wanted to mention that the info for Dr Scott Jensen needs to be updated for the AZ Doc for the coimbra protocol. He’s actually licensed as a doctor in all fifty states. This is a huge asset to patients. He also takes many insurances. His website is now JensenFamilyWellness.com and he is in Lakeside rather than Queen Creek Arizona. I hope this helps spread the word.

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    • Hi Chrissy,

      Thanks for this information. I am in the process of updating the whole list but I will prioritize this one since you clarified it for me.It is great to hear he takes insurance too as this is an issue for a lot of people wanting to do the protocol. Many thanks and good luck 🙂

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      • Here is the correct info for Dr Jensen. I believe he’s even licensed for even Hawaii now though. Thank you so much for sharing all this info!!! What a blessing to the autoimmune community!! I’ve been stable 8.5 years now. I just had yet another stable MRI. I was diagnosed in 2016. So grateful!!

        Dr. Scott Jensen
        Jensen Family Wellness
        6682 Lower Ridge Dr,
        Lakeside, AZ 85929-5064
        p(928) 224-4270 ,|
        f(928) 212-9017,

        Dr. Jensen is licensed and able to offer treatment in every state in the United States except Hawaii!

        Dr Jensen now accepts most insurances and traditional medicare except Humana. He also has cash pay prices.

        Please call or email Max Rosenhan at +1 928-224-4270 or at max.jfm@gmail.com if you have additional questions about cash pay prices and insurance plans accepted.

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