David Ellis arrived at HSCT Hospital India using a cane and unable to lift his left leg without helping it. By the time he recorded this video at the hospital he could lift it, and he names that movement himself as something he could not do before. He is from California in the United States and he had been living with primary progressive multiple sclerosis since 2011.
Primary progressive multiple sclerosis affects about one patient in ten with MS. It declines gradually from the start, without the distinct relapses that mark the relapsing remitting form, and the range of drug treatment for it is narrower. David had been through three disease modifying drugs before he came. His mother Nancy travelled with him as his attendant and the two of them stayed for thirty days. Autologous haematopoietic stem cell transplantation, known as HSCT, uses a patient’s own stem cells to rebuild the immune system after the misdirected immune cells are cleared.
| David Ellis: Primary Progressive MS Results at a Glance |
| Patient | David Ellis, California, United States |
| Condition | Primary progressive multiple sclerosis, from 2011 |
| Drug treatment before HSCT | Copaxone, then Tysabri, then Ocrevus. He names all three in the video |
| Treatment | Autologous HSCT at HSCT Hospital India, New Delhi |
| Attendant | His mother Nancy, who stayed with him for the full thirty days |
| Time in hospital | Thirty days, in a deluxe private room with triple level HEPA air filtration |
| Mobility on arrival | He had lost physical activity and abilities and had started having to use a cane |
| Movement he regained | Lifting his left leg without helping it, which he could not do before |
| Why India | He chose India over programmes closer to home in California, on his own judgement of the programme and the price |
| Price | 30,000 US dollars, all inclusive, for the thirty day package |
Primary progressive MS before the transplant
David was diagnosed in 2011 as a primary progressive MS patient. He was treated with Copaxone, then Tysabri, and lastly Ocrevus. He managed pretty well through the Tysabri period, in his own words. The decline he describes came later.
In his own words, once he was on the last of those drugs he noticed "the greatest decline in my overall performance and abilities and things were getting quite worse". He lost a good deal of physical activity, and he started having to use a cane.
Why he chose India over a programme in California
David opens the video with the decision itself rather than the diagnosis. HSCT programmes exist much closer to him, including in California.
"There are programs closer to the United States, especially California, but I came to India for multiple reasons, because I thought this program was better and cheaper."
David Ellis, California
HSCT Hospital India treats patients from thirty countries in world class facilities accredited by the Joint Commission International of the USA, alongside NABH and NABL. More than 1,500 MS patients have already been treated. The price is one all inclusive figure of 30,000 US dollars covering a thirty day stay, and there is no long waiting list.
The movement he regained
David is specific about what changed, and he limits himself to what he can demonstrate.
"The results have been really positive. I can actually point to some things that I could not do before. I was not able to lift my left leg without helping it, so that is something I can point to, in the amount of time I have been here and gone through the program."
David Ellis, recorded at HSCT Hospital India
He recorded the video at the hospital after going through the thirty day programme. He does not state how many weeks passed between the transplant and the recording, and no figure is put on his recovery here beyond the movement he names.
Patients with progressive MS who read a case like this usually want to know whether a transplant applies to their own. An HSCT case manager will look at the diagnosis, the recent MRI activity and the current level of function, and give a free opinion, with no cost and no obligation.
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Travelling with an attendant
David’s mother Nancy came with him as his attendant and stayed the full thirty days. He answers the question most international patients ask before booking, and he answers it against his own first instinct.
"This is my mom, she was my caregiver that came with me. I doubted initially if a caregiver was necessary, but now, after going through the 30 day program, I now know a caregiver is absolutely necessary."
David Ellis
An attendant stays in the same deluxe private room as the patient for the whole thirty days, with triple level HEPA air filtration, and the cost of that stay is inside the one all inclusive price. Nothing separate is charged for the person who travels with the patient.
What David says about the programme
David gives an unvarnished account of the treatment itself, and then sets it against the alternative.
"Just so you know, the program is not easy, and it will be tough on your body and your mind. But living with MS is also."
David Ellis
HSCT is a conditioning regimen followed by the return of the patient’s own stem cells, and the weeks around it are demanding. That is managed with a deluxe private room under triple level HEPA air filtration, daily specialist review, and post transplant rehabilitation physiotherapy built into the thirty days.
He also raised points he wanted improved, said the doctors were working on them diligently, and closed by hoping that by the time future patients arrive those points will have been dealt with.
HSCT for primary progressive MS
HSCT can help progressive multiple sclerosis, whether secondary or primary, where active inflammation is still present. Where a patient has long standing progressive MS with a high EDSS score and no inflammatory activity on MRI, a transplant offers least, and HSCT Hospital India says so before anybody travels. Every case is assessed on the diagnosis, the recent scans and the current level of function before an opinion is given.
The full eligibility position, the EDSS bands, the four stages of the procedure and the published outcomes data are set out in the HSCT for multiple sclerosis guide. Patients travelling from North America will find the route, the visa position and the costs compared in the guide to HSCT for MS for patients in the USA.
Transcript of the video
The words below are David’s own. The video carries automatic captions, so the text has been punctuated for reading, the filler words have been removed, and four places where the captions misheard him have been written out as he says them: the drug names Copaxone, Tysabri and Ocrevus, and the length of the programme, thirty days. Contractions are written in full and obvious caption slips are corrected. No wording has been added and nothing he said has been left out. Nancy does not speak on camera.
David: Hello, my name is David Ellis and I have come to hospital to treat my MS. I have come from the United States, California, United States.
David: There are programs closer to the United States, especially California, but I came to India for multiple reasons, because I thought this program was better and cheaper.
David: I have suffered from multiple sclerosis since 2011, and I was diagnosed as a primary progressive MS patient. I treated it with different drugs, from Copaxone to Tysabri and lastly Ocrevus.
David: I managed pretty well through the Tysabri period, but the Ocrevus, I noticed the greatest decline in my overall performance and abilities, and things were getting quite worse. Lost quite a bit of physical activity and abilities, and started having to use a cane.
David: I think the program is great and the results have been really positive. I can actually point to some things that I could not do before. I was not able to lift my left leg without helping it, so that is something I can point to, in the amount of time I have been here and gone through the program.
David: Just so you know, the program is not easy, and it will be tough on your body and your mind. But living with MS is also.
David: There are things that need to be improved, but the doctors are working on those things diligently.
David: This is my mom, she was my caregiver that came with me. I doubted initially if a caregiver was necessary, but now, after going through the 30 day program, I now know a caregiver is absolutely necessary.
David: I hope by the time this gets out to all of you, and you do decide to come here, all the things and the inconsistencies that we might have dealt with have all been rectified and taken care of. Thank you so much.
Patients in the United States who are weighing a domestic programme against travelling can have the two compared for their own diagnosis. An HSCT case manager answers personally, free of charge, with no obligation.
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Read next
HSCT for multiple sclerosis: the full treatment guide
HSCT for MS for patients in the USA
HSCT cost by country, India compared with Mexico, Russia and the USA
HSCT eligibility criteria
