Hope versus hype: an online guide

Hope versus hype: an online guide

In recent years the hype surrounding stem cells and the hope they might bring to patients with incurable diseases has grown at an alarming rate. We need to remember that stem cell treatments which make claims that are not based on valid science and good clinical practice can be unethical and potentially harmful.

Clinics providing such stem cell "therapies" and claiming to cure or improve the health of people with neuromuscular disorders (NMDs) without providing scientific proof of these claims, only encourage false hope in patients. Clinics which charge large amounts of money for these therapies may be fraudulent, as they use the hype surrounding stem cells to mislead people for financial gain.

There are lots of trials using stem cells for various diseases, but not currently for NMDs, where promising results from animal studies have not yet been moved into many trials. There is much scientific work to be done before they can be truly shown to be effective and safe in treating NMDs and ultimately hopefully offered as part of clinical practice.

Use the links below to explore the issue of stem cells for yourself. If you have any questions or want to comment on this issue, please email us. If you wish to translate this article into another language please contact us.

Latest Articles

Stem cells to treat muscular dystrophies – where are we?
Meng J, Muntoni F, Morgan JE. (2011) Neuromuscular Disord, 21, 4-12. (Subscription only article). The authors examine the evidence that stem cells could be used to treat muscular dystrophies and the criteria that an ideal stem cell should meet. The importance of validated SOPs is highlighted to allow for consistent and reproducible results.

No benefits from experimental treatment with olfactory ensheathing cells in patients with ALS
Piepers S, Van den Berg LH. (2010) Amyotroph Later Scler, 11, 328-330. (Subscription only article)
The authors carried out a prospective study on seven Dutch patients all clinically diagnosed with ALS who decided to undergo experimental olfactory ensheathing cell (OEC) treatment (stem cell treatment) in China. The patients were seen at the outpatient clinic four months before, just before and six and twelve months, respectively, after treatment. Two patients suffered a serious adverse effect, one patient dying as a result. The authors therefore conclude that there were no indications the OEC treatment was beneficial.

Stem cell therapy 'damage' seen in kidney disease case
Article from the BBC highlighting the case of a woman with kidney disease who received stem cell therapy and then suffered tissue damage and died from an infection.

Angiomyeloproliferative lesions following autologous stem cell therapy
Thirabanjasak D, Tantwongse K, and Scott Thorner P. (2010) J Am Soc Nephrol, 21, 1218. (Subscription only article)
The authors studied the kidney of a woman who died 11 months after receiving stem cell treatment in Thailand for lupus nephritis (a renal disease). The kidney was examined and found to have developed masses at the site of injections, with blood vessel and bone marrow tissue present, which are believed to be either stem cell-derived or -induced.

Inefficient dystrophin expression after cord blood transplantation in Duchenne muscular dystrophy
Kang P B, et al. (2010) Muscle and Nerve, 41 (6) 746-750. (Subscription only article)
A boy with Chronic Granulomatous Disease (CGD) (a blood disease) received two stem cell transplants from umbilical cord donors to treat the condition. The CGD was cured after the second transplantation, however after 2.5 years he was diagnosed with DMD.

Guidance and articles

EMA position statement on unregulated stem cell products
Statement on the use of stem cells as medicinal products within the EU.

UK stem cell network position statement on stem cell tourism
Short statement for those interested in stem cell therapy outside the UK.

International society for stem cell research website on stem cell treatments
Website designed to arm patients, their families and doctors with information they need to make decisions about stem cell treatments.

International society for stem cell research video
An introductory video to the society’s handbook for patients (provided below).

Stem cell researchers face down stem cell tourism
Article from the journal Nature with background to unproven stem cell therapy and some patient and carer views.

Will hope triumph over hype?
Article from the Times online newspaper (UK) highlighting some patient views on unproven stem cell therapy, using the example of multiple sclerosis.

Muscular dystrophy

DMD research overview
A leading geneticist provides a summary of the current therapeutic approaches for Duchenne muscular dystrophy.

Warning against unproven myoblast transfer therapy
A letter from the Secretary General of the World Alliance of Neuromuscular Disorder Associations.

Myoblast therapies lack scientific validation
A personal viewpoint from Chris Rosa director of the Office of Special Services for Students with Disabilities at Queens College of the City University of New York.

Scientific articles annotated bibliography

Subscription-only articles (links are provided below but you probably won't be able to get free access to these articles unless you have a subscription to the journal or are accessing them from a library or institution that has a subscription)

The murky ethics of stem cell tourism
MacReady N. (2009) Special Report, Lancet Oncology, 10(4) 317.
The author says that “desperately ill people and their loved ones will snatch at any glimmer of hope” which is what gives the stem cell clinics such appeal to the public. The motive of these practitioners is yet to be understood and they must perform an ethical balancing act.

Medical innovation versus stem cell tourism
Lindvall O, and Hyun I. (2009) Perspective, Science, 324, 1664.
The issues surrounding stem cell tourism are complex as they invoke questions concerning the acceptable levels of medical innovation. The issues and conditions under which “unproven” therapies may be offered to patients outside of regular clinical trials are discussed. It is stated that patients should continue to be counselled against medical travel for unproven stem cell-based therapies until our knowledge changes.

Monitoring and regulating offshore stem cell clinics
Kiatpongsan D, and Sipp D. (2009) Policy Forum, Science, 323, 1564.
This article deals with the regulations involved with stem cell-based therapies. The authors state that a global ban on unapproved treatments seems unlikely to succeed; instead each government must take great care when granting funds and recognise those that fall short on ethical and professional standards. To ensure the potential of stem cell research has the chance to continue developing it must remain unhampered by fraudulent claims of success.

The allure of stem cell therapy for muscular dystrophy
Grounds M D, and Davis K E. (2007) Neuromuscular Disorders, 17(3) 206.
Claims of success using stem cell treatment in animal models of human muscle diseases require careful evaluation and are not necessarily easily extrapolated to the clinical situation. Studies on dystrophic dog models using mesangioblasts have claimed to show a reduction in the disease; however they failed to take into account the benefits of the immunosuppressive drugs when interpreting their results.

Therapeutic possibilities in muscular dystrophy: the hope versus the hype
Dubowitz V. (2002) Editorial, Neuromuscular Disorders, 12(2) 113.
This article looks at the science and the publicity surrounding the major developments. There has been an imbalance created between the hope and aspirations of the families and the clinicians and the hype that has been generated by the media. Much of the confusion seems to have come from the misuse of terminology.

Stem cells: roadmap to the clinic
Daley G. Q. (2010) Journal of Clinical Investigation, 120(1) 8.
Short review article on the state of the field of stem cell research and some of the major advances. Provides many references to other papers.

Stem cell transplants: the power of peer-to-peer
Creasy G, and Scott C T. (2009) Correspondence, Nature Biotechnology, 27(1) 21.
Letter to the editor about how misinformation can be transmitted using the internet and online communities. It is the authors’ view that engaging reliable peer-to-peer networks early can uncover misinformation.

Tracking the rise of stem cell tourism
Ryan K A, Sanders A N, Wang D D, and Levine A D. (2010) Regenerative Medicine, 5(1) 27.
This paper has attempted to offer insight into the motivations of the patients who are willing to, or have had, unproven stem cell treatment. There is little published data on these treatments and so blogs written by patients or their caretakers were analyzed instead. The data collected showed that patients travelled to 11 clinics in 8 countries suggesting that the use of unproven stem cell therapies is growing and attracting a wider range of patients.

Selling the stem cell dream
Enserink M. (2006) News focus, Science, 313.
This news article outlines the claims of success by some scientists and clinics, which are challenged by some experts, saying instead that “scepticism and caution are in order”. Unregulated clinics around the world offering stem cell therapies recruit patients on the premise of providing what regular medicine cannot.

Stem cell clinics online: the direct-to-consumer portrayal of stem cell medicine
Lau D, Ogbogu U, Taylor B, Stafinski T, Menon D, and Caulfield T. (2008) Cell Stem Cell, 3, 591.
Research article outlining how unregulated stem cell clinics around the world use direct-to-consumer advertising as a means of reaching patients. The article questions the way that stem cell therapies are portrayed, the sorts of therapies being offered and whether there is any clinical evidence to support the use of these therapies. The claims made on these websites have been found to be “optimistic and unsubstantiated” by peer-reviewed literature and there are concerns that some, if not all, of these clinics are exploiting desperate patients.

Free articles
Donor-derived brain tumour following neural stem cell transplantation in an Ataxia Telangiectasia patient
A boy with ataxia telangiectasia (AT) was treated with injections of human fetal neural stem cells. Four years after the first treatment he was diagnosed with a multifocal brain tumour. Studies revealed that the tumour was of non-host origin suggesting it was derived from the transplanted neural stem cells.

Stem cell hype and the dangers of stem cell "tourism"
Free article from the Stem Cell Network website outlining the danger that hype and unrealistic expectations can have for people going abroad to receive unproven stem cell treatment.

General stem cell information

A stem cell story – video (English)
A 15 minute film describing what stems cells are, how they work and their potential for therapy. Also available in Deutsch, Français, Nederlands, Italiano and Svensk.

Stem cell education resources
Introductions to some of the different aspects of stem cells and stem cell research.

12 Apr 2017