Everything begins from a fatal diagnosis. Cancer, HIV infection, or an autoimmune disease able to transform a person into a vegetable over a few years. States of mind follow one another: terror, depression, disbelief, refusal, till the passive acceptance of one’s own destiny. That will coincide with death, in the best case scenario, or with a life spent staring at the ceiling without being able to move, communicate, or express one’s feelings. For years the patient will hear the others repeat phrases like “medicine has made great strides”, “we sent a man to the Moon, I am sure they will find the cure very soon”. Those words belong to people who can afford the luxury of consolation because they lead normal lives, unlike their interlocutor who will progressively abandon all hope, step by step, as he will feel his body fail him, not react anymore. A limbo of despair and pain in which s/he is waiting for a miracle to happen, the impossible event, which often coincides with an experimental protocol based on stem cells.
The topic is difficult and it departs from one question: when all chances of survival with traditional therapies vanish, is changing the route the right thing to do? Translation: it is better to let oneself die or live in hope till the last moment? This question does not have an objective answer, yet every State is dutifully concerned with it. Because in that grey area between light and darkness that each one of us experiences during a disease, there is always a hand ready to take advantage of our situation. In Italy the Stamina case has recently ended with a settlement requested and obtained by the “guru” Claudio Vannoni (absolved at the end of the limitation period in the process for attempted fraud to the Piedmont Region). But world news are full of hospitals and laboratories that inject therapies based on “alleged stem cells” to patients who are often little children. They abuse of their pain, exacerbated by hopes raised by the “official” science but disappointed by years of waiting. The alarm was set off by an editorial of the journal Bmc Medical Ethics, according to which in many cases the same sick people who ten years ago collected funds for research, now handle this “tourism of cells’ which is expensive and often dangerous for a person’s health. A slap in the face of science.
There are several examples mentioned in the article, signed by Kirstin Matthews from the Rice university and Ana Iltis who directs the Wake Forest’s Center for Bioethics, Health and Society, according to whom, in 40% of the cases, those therapies are administered to minors. An Israeli young man with a rare genetic problem in his brain has developed several tumors after an injection of fetal stem in Russia, whereas a girl treated for multiple sclerosis in Costa Rica had a “catastrophic” encephalomyelitis. This phenomenon affects also countries where controls are stricter, such as Germany where a few years ago, a clinic that took advantage of a flaw in German law, was closed after the death of an 18-month-old child after an injection of stem cells in the brain to cure a genetic disease.
Besides the consequences on the patient’s health, in these cases there is also a remarkable economic expenditure. Treatments can cost hundreds of thousands of dollars. “These operations cannot prove their safety and effectiveness – stressed the authors -, patients may lose time and money, while excluding other opportunities for therapy. Moreover, these practices do not contribute to scientific progress because the data about them are not made available so as to divulge the outcomes. Besides, there is no guarantee that patients are actually receiving the kind of assistance they were promised, the dosage is unknown and there is no support for any problems that may arise after the procedure”. To stop this “tourism of stem cells”, the article concludes, institutions must cooperate more with patients associations. “Important lessons – they explained – can come from what has been done in terms of access to therapies by the associations of patients with Aids or breast cancer”. Dialog is the only way to break this vicious circle triggered by despair. The same could be said also against some doctors who sometimes put their professionalism and solemnity before the basic need of the patient to be reassured. They risk not only to push the patient to use potentially dangerous therapies, but also to make him/her fall into the temptation to rely on gurus and wizards passed off as white coats. Unscrupulous people who make profit from family tragedies. A word of comfort would suffice to snatch them from the clutches of those who will use their pain to swell their wallets.