Stem cell therapy and amyotrophic lateral sclerosis.
Article Type: Letter to the editor
Subject: Amyotrophic lateral sclerosis (Care and treatment)
Amyotrophic lateral sclerosis (Research)
Nervous system diseases (Care and treatment)
Nervous system diseases (Research)
Stem cells (Transplantation)
Stem cells (Usage)
Stem cells (Health aspects)
Authors: FrancloHenning
Carr, Jonathan
Pub Date: 06/01/2012
Publication: Name: South African Medical Journal Publisher: South African Medical Association Audience: Academic Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2012 South African Medical Association ISSN: 0256-9574
Issue: Date: June, 2012 Source Volume: 102 Source Issue: 6
Topic: Event Code: 310 Science & research
Geographic: Geographic Scope: South Africa Geographic Code: 6SOUT South Africa
Accession Number: 293812437
Full Text: To the Editor: We have been made aware of several patients with neurological diseases attending stem cell therapy centres, and in particular individuals with amyotrophic lateral sclerosis (ALS). The opening of stem cell clinics in South Africa has led to an increased number of patients pursuing this therapy at great financial cost and with high expectations. Regarding this technology, we would like to emphasise the following:

1. There is a complete absence of sound clinical evidence for the efficacy of stem cell therapy for ALS and neurodegenerative diseases in general. No randomised controlled studies or even open-label studies with long-term follow-up exist. Furthermore, a prospective case series in the Netherlands showed no benefit from treatment with olfactory ensheathing cells in patients with ALS. (1)

2. Long-term safety data on the use of stem cell therapy in neurological disorders are lacking.

3. Currently, the main utility for stem cell technology in neurological disorders is the ability to offer human in vitro models for understanding disease mechanisms and facilitating drug discovery. Although the potential for cell-based therapy exists, current claims of efficacy in ALS and other neurodegenerative disorders are premature and unsubstantiated.

We have strong scientific, ethical and economic objections to clinics offering stem cell therapy on a commercial basis, as well as medical practitioners recommending (or not advising against) this modality for neurological disorders. Patients with incurable diseases such as ALS are desperate and emotionally vulnerable to the claims of institutions allegedly being able to heal a number of diseases that modern medicine is unable to. Although we respect their autonomy and right to self-determination, patients are seldom equipped to assess the evidence for or against different treatment modalities, and are therefore reliant on medical professionals in decisionmaking. Moreover, regulations guiding stem cell research and therapy are sorely lacking in South Africa. (2) It is therefore the healthcare professional's moral duty to present patients and their families with relevant information in an understandable manner. In the case of stem cell therapy, this involves a thorough discussion about the absence of scientific evidence and the likelihood that substantial sums will be paid by patients for no discernible benefit. Failing to do so, in our view, is unethical and not in the best interests of the patient.

Franclo Henning

Jonathan Carr

Division of Neurology

TygerbergAcademic Hospital/Faculty of Health Sciences, Stellenbosch University

fhenning@sun.ac.za

(1.) Piepers S, van den Berg LH. No benefits from experimental treatment with olfactory ensheathing cells in patients with ALS. Amyotroph Lateral Scler 2010;11(3):328-330 [PMID: 20433414].

(2.) Pepper M. The stem cell regulatory environment in South Africa: cause for concern. S Afr Med J 2009;99(7):505-507 [PMID: 20460017].
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