Not only does the stem cell industry prey on the gullibility of expectant parents, but it does so with the shameful complicity of some South African medical schemes, writes Alastair McAlpine in his MedicalBrief' Digital Clubbing column.
It is predatory pseudoscience of the worst kind. An expectant mother, full of the joy and excitement of bringing a new life into the world, but also fearful of the myriad serious illnesses and hazards that potentially lie in wait for her precious infant, is approached by a slick businessman with a shiny pamphlet. He uses fancy words and points to impressive-looking studies. He throws around phrases like, ‘Headquarters in Geneva’, ‘The medicine of the future’, ‘Endless possibilities’, and then, lowering his voice, intimates that this is the only opportunity, and that to not buy into his offer could potentially place the beautiful child in harm’s way. Harm that is eminently preventable.
What kind of parent would do that? Backed by cowardly medical aids that lend support to this nonsense, he strides away, with a small fortune in his pocket, and the promise of monthly sums for years to come. He has sold her an expensive dud called cord stem cell storage. And it’s time to call it out for the scam that it is. Buckle your seatbelts, folks, it’s time to expose some bad guys.
There is a lot of excitement in some medical circles about stem cells. These are, after all, cells that are capable not only of replicating themselves, but of differentiating into different cells entirely. There are many different kinds of stem cells, with different potential cell lines, but at the core of all stem cell therapy is this exciting idea: if an organ is letting you down, couldn’t we just grow you a new one? With the right technology, could we potentially see the end of all degenerative conditions, from Alzheimer’s and multiple sclerosis, to autoimmune disease and even cancer?
It is with this in mind that parents are convinced to store cord blood. Cord blood contains haemopoietic stem cells, meaning that the progenitors for all the blood cells in the human body are present. So, while these cells will not allow you to, say, grow a liver, they will allow you to potentially regenerate the blood cells in a way that would avoid you having to get a bone marrow transplant from another donor, and all the complications that that entails (immunosuppression, graft vs host disease, etc). The cord tissue, usually Wharton’s jelly, contains mesenchymal stem cells (MSC) that could potentially be used to develop actual tissue, like nerve cells.
Sounds amazing, right? Why the cynicism, Digital Clubbing? Isn’t this science at its miraculous best?
Well, no. And here’s why. Firstly, the odds that you will ever make use of your own stored blood and tissue is vanishingly small. Private stem cell banks are loathe to share their data, but current estimates are that only 0.0005 to 0.002% of people benefit from the blood that was stored when they were young, and even fewer the cord tissue. These are tiny numbers. How do we explain this?
In order to transplant the new haemopoetic cells, the old ones in a patient’s body usually have to be completely obliterated. Failure of the new cells to engraft thus has serious consequences, leaving someone without a functioning immune system, and at a high risk for life-threatening infections. The volume of blood collected from the cord of a neonate is usually simply too small to make use of when an individual is older and larger, which increases the likelihood of treatment failure. In addition, cord cells take a lot longer engraft than those from bone marrow. As a result, many clinicians are hesitant to take the risk of using cord cells and elect instead for sources with higher volumes and which engraft faster.
In addition, many of the conditions that require new blood cells have a strong genetic component (some leukaemias, various aplastic anaemias, etc). The cord cells share identical DNA with the diseased cells, and thus a replacement with these cells would be futile.
It is also unknown how long cord stem cells can actually be stored in a frozen state. Current estimates are that after 15 years the cells may become useless, but the truth is that we simply don’t know. It is very likely, at the very least, that the cells become less useful the longer time goes on.
With regards to the cord tissue, there is little consensus at present on how best to collect, store, and utilise these MSCs, and current applications are non-existent. While the companies throw out fanciful claims about ‘curing diabetes’ or ‘treating multiple sclerosis’, in their current form, these cells are essentially useless. Many studies are underway, but unfortunately, we are many, many years away from a practical application for MSCs.
And finally, the stem cell industry is very (very!) poorly regulated. Collection, storage and administration are left to the individual companies. Because of this, the consumer has no way of knowing which standards (haha! Remember those?) are being adhered to. Professor Nicholas Novitsky, professor of haematology at Groote Schuur Private Hospital, commented in The Times that on both occasions that he had tried to make use of stored stem cells, they had been so poorly preserved as to render them completely useless.
Even wealthy countries seem to exist in a stem cell regulatory vacuum. What this means is that in developing countries like South Africa it is basically a free-for-all. To illustrate this point, Professor Michael Pepper wrote in the South African Medical Journal that in a survey of 8 South Africans who received stem cells, 7 were injected with – wait for it – sheep and rabbit stem cells. At a cost of over R120,000 per treatment. 5 patients went overseas for this privilege. This treatment isn’t always completely benign, either. There’s a case report of a local boy with ataxia telangiectasia who developed a multifocal brain tumour after having stem cells injected into his spinal canal. Unfortunately, the lack of any regulatory oversight means there are no checks to stop this sort of dangerous and often unethical behavior.
This brings us to the local businesses. In South Africa, the two major companies for cord stem cell storage are Next Biosciences, and CryoSave. Both will beguile you with tales of lives saved, and potential benefit. Both will charge you, approximately, R20,000 for collection of your cells. But much like a romp with an expensive prostitute, it’s the extras that really hurt the wallet: you’ll pay more if you want umbilical tissue stored as well; more if you want the cells stored abroad; more to access the cells should you actually need them; more for the monthly storage fee. You’re probably beginning to get the idea…
While South Africa could potentially benefit from a public cord cell bank (allowing individuals with deadly conditions a greater chance of finding genetic matches for stem cell replacement), a local one currently does not exist. The companies mentioned above offer private storage facilities, which means that the stem cells are not available for the general public. Only you or your immediate family will benefit. Maybe. But you certainly won’t benefit from anyone else.
Shamefully, medical aids have also jumped onto the bandwagon. Discovery, for example, will subsidise up to 25% for stem cell storage. Since the evidence is so poor for this treatment, and since this sort of nonsense contributes toward rocketing medical aid costs, we can only speculate why South Africa’s biggest medical aid indulges in this silliness…
At the end of the day, cord stem cell storage is one of those ideas that sounds good on paper. Most parents will do almost anything to ensure the good health of their children, so paying some money to bank a bit of blood on the off-chance that it could prove useful in the future seems like a no-brainer. But when you look at the expense of collecting and storing them, the vanishingly small chance that you will ever actually make use of them, the extremely limited practical applications for them at present, the complete lack of any sort of meaningful regulation of the practice, and the emotive and manipulative language that surrounds the collection and storage of them, only one conclusion can be drawn about cord stem cells: the expectant mother mentioned at the start of this column should, after writing a strongly worded letter to her medical aid asking why it endorses such nonsense, take the shiny pamphlet from the salesman, and throw it in the dustbin.
Previously in Digital Clubbing…
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