Monday, 19 December 2011

Health Tourism: It is Not always Safe

Some of you have been commenting on interesting stuff such as the New York Stem Stem Foundation and so you know there are lots of others such Harvard Stem Cell Institute the Institute for Stem cell Research as the UK Stem Cell Foundation etc, etc.

However, whilst stem cells do offer massive potential their most challenging use will be in the repair of the nervous system.Therefore it is unrealistic to expect miracles too quickly, as there are many hurdles to climb.

In the New Year maybe we can expand on Stem Cell Research, but it is a field that has huge public interest...which can lead to alot of "in my opinion" unhelpful media spin. This is also not always helped by claims of researchers about the significance of the studies.

Whilst there has been progress in stem cell research there are many unknowns and it is our opinion that people recieving stem cell treatments should do so as part of registered clinical trials in reputatble places, until they are shown to work and be safe.

Stem cell is a a term used that can describe a number of things and whilst some stem cells have the ability to re-create every one of the individual cell types in the body. However, without understanding the biology of these stem cells they can sometimes become cancers or act as a buzz word on which to hang some unproven treatments/procedures by some unscrupulous individuals, who will often locate themselves to places where regulations controlling health care are lax. With this in mind I report on this new case study

Stem cell transplantation is an investigational therapy for multiple sclerosis. This study describe a case of catastrophic demyelinating encephalomyelitis following stem cell transplantation in a 17-year-old girl. Nine months after an initial diagnosis of multiple sclerosis, she underwent stem cell transplantation in Costa Rica.

Subsequently, she deteriorated and was transported back to the United States with headache and vomiting progressing to quadriparesis (movement of all limbs affected), locked-in syndrome (awake/aware but unable to communicate) and superimposed encephalopathy (Damge to brain) Magnetic resonance imaging and brain biopsy were consistent with fulminant demyelinating encephalomyelitis (EAE in human) with MRI enhancing lesions, with white blood cells in the cerebrospinal fluid. The protracted illness required tracheostomy and gastrostomy. After methyleprednisone, intravenous immunoglobulin, and cyclophosphamide, she improved during 2.5 months to an ambulatory, functionally independent state. Subsequently, typical less severe multiple sclerosis relapses occurred.

This case demonstrates that stem cell transplantation may provoke life-threatening encephalomyelitis in patients with multiple sclerosis. This highlights the need to restrict transplantation to trials with appropriate safety controls.

Although it is difficult to know what triggered the attack and whether it was the stem cells and/or the procedure that caused the encephalomyetitis. As the cells were put in intrathecally (directly into the brain) there is a reasonable chance that they were causally related. It appears that unprorven procedures can go wrong with dramatic consequences and shows the dangers of travel to countires for reasons of health tourism.

This highlights the need to restrict transplantation to trials with appropriate safety controls. Whilst we all want stem cell therapy to work invariably these rogue treatments usually lack real science that provides a rationale for them to work.

Prof G may want to add to this.

2 comments:

  1. I am in agreement with you on the need to exercise great vigilance when it comes to the MS community seeking unproven treatments―stem cells or CCSVI― in countries that lack rules and regulations regarding medicinal procedures

    MS’ers are in a vulnerable situation, often at the mercy of feckless NHS neurologists who are unable to provide the care and reassurance patients deserve. I think it takes a very weak individual to pursue treatments that are, as yet, not proven to be of benefit in those with MS. One of the first things a hospital will tell somebody that is diagnosed with MS is not to fall victim to MS scams. There is no excuse to seek such actions and we should know better.

    However, stem cell therapy is the future of MS treatment. We may not be there yet, and it may not happen in our lifetimes, but one day MS will be curable through stem cell therapy. I really believe that. What I love about the NYSCF’s website is the sheer optimism of it. Some of the leading scientists at the NYSCF working on MS even have the disease themselves. They have an unbelievable commitment to bettering the lives of those with MS and it has a vision that I can’t help but be impressed by. The NYSCF is a non-profit institution and was established by parents and philanthropists who have friends and family members suffering from devastatingly incurable illnesses.

    I visit this blog everyday and love the fact that you provide us with such an invaluable educational resource. I don’t work in the MS research field but one forgets what an active arena of development it is and how much work others are doing to make our lives better. The scientists are assuring us they will get there but the miracle isn’t going to happen today. Therefore, prudence is essential. Likewise, scientists have a responsibility to ensure they remind patients of the success they are making and the potential future breakthroughs that may make their lives all the more endurable.

    I am so grateful for the glimmer of optimism Prof G gave us all last night in his end of year message. I hope all he said comes true, but I also hope MS ‘ers can manage their expectations and not get angry when the panacea they were hoping for doesn’t materialise instantly.

    Let’s keep it real.

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  2. I think it's important to distinguish between stem cell treatment and stem cell transplantation. They are not inter changeable terms.SC transplantation is used the world over for the treatment of leukaemia etc. In this the recipient's immune system is generally totally ablated and donor stem cells or bone marrow are introduced into the recipient's body intravenously. This has been used in some cases for MS. It is difficult to tell whether in the Cuba instance the girl's immune system was ablated, and I have never heard of stem cells being delivered intrathecally in SC transplantation for haematological malignancies.

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