HSCT free on the NHS – “ask us your questions” irresistible offer

Here’s some great news. Anyone who would like first-hand information about any aspect of getting HSCT free of charge from the UK’s National Health Service (NHS), you don’t need to look any further.

HSCT free

James Coates.

Whether you want to know about the application process or details of the treatment itself, your questions can be answered.

Three days ago, I brought you news of the fact the HSCT had been given to James Coates by the NHS, along with his progress at 45 days after his transplant.

Since then, his wife Alison has told me that both she and James are happy to answer your questions via Facebook.  Alison said: “Ian, if any of your enquirers would like to talk to us directly, do tell them to drop us a line on here – happy to answer any questions.”

To make contact, simply send a personal message, via Facebook, to @alison coates

 

 

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Free HSCT in the UK, here’s the NHS criteria

Since my story on Sunday about James Coates, who has Secondary Progressive MS, having HSCT free of charge on the UK’s National Health Service (NHS), I have been inundated with enquiries.

Most have been concerned about whether they can qualify for treatment and, so, today I am going to set out the latest criteria that I can find but must point out that the requirements may have been modified since this was produced by the London MS-AHSCT Collaborative Group.

nhs-logoIt must be noted that to be considered for this treatment, a patient must be living in the UK with MS that must be ‘active’. The group has also stressed that this as an exceptional therapy for some people with MS, rather than a standard treatment; neither the National Institute for Health and Care Excellence (NICE) nor NHS England have given the go-ahead for this therapy to be used routinely to treat any form of MS.

nice-logoThis is the Patient Eligibility Criteria Adopted by the London MS-AHSCT Collaborative Group.
The eligibility criteria are overall aimed at selecting patients who have failed approved treatments of high efficacy or have none available to them and have recently presented evidence of inflammatory CNS disease activity; and who could undergo AHSCT with an acceptable estimated level of risk of adverse events. Justification for each of criteria is supported by evidence from AHSCT trials and observational studies.

Referral criteria:

  • Diagnosis of MS made by a neurologist
  • Able to walk, needing at most bilateral assistance to walk 20m without resting
  • In relapsing MS (RMS), failed one licensed disease modifying drug of high efficacy (currently including alemtuzumab and natalizumab) because of demonstrated lack of efficacy
  • New MRI activity within last 12 months

Inclusion criteria: 

  • Age 18 to 65 years
  • Disease duration ≤15 years from diagnosis of MS
  • Diagnosis of MS according to McDonald’s criteria
  • For PPMS, CSF OCB+
  • For RMS, failed at least one licensed disease modifying drug of high efficacy (‘Category 2’ as defined by Scolding N, Barnes D, Cader S, et al. Pract Neurol 2015;15:273–279; currently including alemtuzumab and natalizumab) because of demonstrated lack of efficacy (as evident from relapse, MRI activity as defined below at Point 7, or EDSS increase) after being on DMT for at least 6 months
  • EDSS score 0-6.5
  • Inflammatory active MS as defined by ≥1 Gd+ (>3mm) lesion (off steroids for one month) or ≥2 new T2 lesions in MRI within last 12 months
  • Approved by the MDT

Exclusion criteria:

  • Eligible for an ethically approved clinical trial where AHSCT is offered as one of the treatment arms
  • Unable to adequately understand risk and benefits of AHSCT and give written informed consent
  • Prior treatment with total lymphoid irradiation and autologous or allogeneic hematopoietic stem cell transplantation London MS-AHSCT Collaborative Group – Patient Eligibility Criteria Final V.3. – 8/12/2015
  • Contraindication to MRI including but not limited to metal implants or fragments, history of claustrophobia or the inability of the subject to lie still on their back
  • Poorly controlled depression or recent suicidal attempt
  • Presence of any active or chronic infection
  • Unable to walk 20mt with or without support, or wheelchair dependent
  • Any significant organ dysfunction or co-morbidity that the Investigators consider would put the subject at unacceptable risk

And they are the criteria in their entirety to the best of my knowledge and belief.

 

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James Received HSCT Free, as He Lives in the UK

Virtually all the talk about availability of HSCT1 as an MS treatment includes the need to travel long distances to other countries, but UK residents can receive the treatment in London, avoiding the journey overseas. What’s more, it is provided through the country’s social National Health Service (NHS) so, like all NHS medical care, patients are given HSCT free of charge.2

Yes, you read that right, while treatment costs worldwide seem to vary between $50,000 and $120,000, not counting travel and other incidental expenses, UK residents can get the therapy free.

James Coates has just undergone non-myeloablative HSCT (the protocol that uses lower-dose chemotherapy drugs) at King’s College Hospital, in London. In fact, today (Wednesday) he reaches 44 days since he received his stem cell transplant.

I was fortunate to be able to contact James, who lives in England’s north-west, to ask about his experiences and how he is getting along.

HSCT free

James Coates.

IF:           We hear different doctors disagreeing about HSCT. Some say it only works with Relapsing MS, others disagree. What type of MS to you have?

JC:          Secondary Progressive with an EDSS score of 6.0 to 6.5.

IF:           How long did it take from applying to receiving treatment?

JC:          After a disappointing start, it was quite quick. All applications have to be considered by a panel which, first of all, in December, turned me down as not meeting the criteria. But I appealed with the support of my neurologist and new MRI evidence. At the next panel meeting at the end of January, my application was accepted. Then, just 15 weeks later, I was in King’s where my treatment was led by consultant hematologist Dr. Majid Kazmi.

IF:           I realize that it’s early days yet, but how are you getting along so far?

JC:          As you say, it’s early yet. But my brain fog has improved and I can think more clearly and understand things more quickly. My constipation is not so bad and, before, when I would lie on the bed I could not move my right leg, as though it was dead; now I can lift it right up.

Delighted to have been given HSCT free

IF:           I know that the first three months are in ‘recovery’ mode and you cannot do any serious exercising yet, but are you happy with having been given HSCT free and your progress since?

JC:          Happy? More than happy, I’d say delighted with both. And the progress is not just me. I had my first follow-up last week and Dr. Kazmi was really pleased that I am, in his words, “ahead of the curve” and doing better than he thought I would. He was surprised and pleased that I have also started to drive again, something I had not done for months. My EDSS score is about the same but it’s too early to expect anything else yet.

IF:           What are your hopes and expectations about the final outcome of this treatment?

JC:          I am realistic about this. Stopping the MS getting worse, halting its progression is my primary goal. Anything better than that would be a great bonus. Of course, I am hopeful of that but stopping it is my main goal.

IF:           What’s next for you?

JC:          Dr. Kazmi, who is so caring, wants to see me again in another month. Then, once three months has passed, I can start some serious exercising.

IF:           Finally, James, what do you think of how you were treated by the team at King’s?

JC:          It was absolutely phenomenal. Not just Dr. Kazmi but the whole team. I cannot speak highly enough about them all.

 

1 Hematopoietic Stem Cell Transplant.

2 Access to NHS services is based on clinical need, not an individual’s ability to pay. NHS services are free of charge, with certain exceptions approved by Parliament.

This article was written by me and first appeared on Multiple Sclerosis News Today.

 

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ian profileIan Franks is Chief Columnist and Patient Specialist at Multiple Sclerosis News Today. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist MS, Health & Disability blog at http://www.50shadesofsun.com. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.