They suffer from often difficult diseases with an uncertain future, and for a chance of cure they are willing to undertake arduous journeys of hope, pursuing the promises of ‘baby cells’. But upon arrival at their destination, patients risk being faced with a ‘scam therapy’ proposed as a cure for miracles. To guide families and help them not to fall into the network of baseless proposals that exploit the ‘name’ of stem cells, there is an ‘anti-fraud’ handbook in ten points. This was proposed by the Advanced Therapies Observatory (Ota). Almost ten years after the Stamina case, the promoters of the initiative explain in a note, “the journeys of hope and the ‘scam therapies’ offered to the sick, especially those suffering from rare diseases, are not over. There is no shortage of fundraisers either. launched to support treatments, often defined as ‘experimental’, of dubious scientific validity and high costs “. Scams, often well-orchestrated, which can be dangerous to your health and your wallet. The vade mecum focuses in particular on stem cell-based cell therapies, “the area of choice for this kind of extreme actions”, and sometimes even beyond correctness and legality. Unauthorized cell therapies, often based on stem cells, explains Francesca Ceradini, scientific director of Ota, “are a worldwide turnover of billions of dollars that affects practically all areas of medicine, with particular interest in neurological diseases and those musculoskeletal “.” A business – he continues – fueled by the gap between the availability of authorized and effective therapies and the unmet needs of patients. stem cell base “. The authors of the vademecum underline that, first of all, it is important to distinguish between trials and authorized therapies: there are different rules to keep in mind if it is proposed to enter an trial or if, instead, a therapy is proposed. And we need to clarify the terms themselves: A trial is a clinical study that aims to test the safety and efficacy of a new drug and evaluate its risks and benefits. If a patient or his family members are offered to participate in an experimentation, it is good to know that access to an experimental therapy does not mean access to a safe and decisive cure for his own pathology. Where to check if the experimentation really exists? There are reliable official sources: the clinicaltrials.gov platform, on which clinical studies conducted internationally can be consulted, while those conducted in Italy can be consulted on the portal experimentazionicliniche.it. These sites also indicate the clinical centers where the studies are conducted and it is therefore possible to know if there is a center in your country and near your home. If the trial does not appear in one of these sources, it is good to have legitimate doubts and ask for further information, as explained in the guide. of experimentation, can be offered legally and free of charge to patients in the context of regulated early access. In some cases, we speak of ‘compassionate use’ which, however, has very specific requirements for use and access. It is also essential to know that in Italy, most advanced therapies – which include cell therapies and tissue engineering products – are paid for by the NHS and are provided by specialized and accredited hospitals. Furthermore, participation in a clinical study and the administration of the experimental drug are never paid. Experts warn only some logistical expenses, such as for example travel and travel or overnight stays, if we talk about available therapies, without mentioning participation in a clinical study and therefore to an experiment, there are other rules to respect. In order not to be experimental, the therapies must have completed the experimentation process, passed the scrutiny of the regulatory bodies and be authorized. Before undergoing stem cell therapy, then, patients and family members should check whether the treatment has been authorized for marketing and with what precise indication. For information on the state of approval of a therapy within the EU, the reference source is the European drug agency Ema. In Italy, the Italian drug agency Aifa. The complete and updated table of the advanced therapies authorized in Europe and Italy can also be downloaded from the portal of the Advanced Therapies Observatory. experienced for a specific disease, the experts explain, “we could be faced with something unclear, about which to be very cautious”. In order to evaluate whether or not to start a stem cell therapy, it is important to know that “there are no miracle therapies” and we must therefore “be wary of those who promise stem cell based treatments capable of treating many pathologies, even very different ones. especially if for a fee “. Stamina teaches. The authors of the vademecum also invite attention to advertising with persuasive language and the use of social networks and the web in marketing mode. It should also be known, they add, that “there are no therapies / drugs without risks or side effects: presenting patients with a therapy as free from any risk or placing secrecy restrictions on the treatment must be considered a serious alarm bell”. When evaluating adherence to an experimental therapy, it is necessary to carefully check the sources: information on treatments must always be very clear and reliable, must accurately report the name of the treatment, for which pathology it is indicated, who developed it, how it is administered, in which facility, what are the benefits and risks. To obtain official and reliable information, it is necessary to contact sources such as regulatory bodies, publications in international scientific journals, scientific societies and accredited hospitals. Patient associations, Ota remembers, are often a valuable source of information on new authorized therapies and experimental therapies.
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