Quackery and the media: the Stamina case
Last month saw the Stamina case come (eventually) to an end; Davide Vannoni, the inventor of the Stamina method (more on that below), reached a plea of one year and ten months for fraud. The Stamina method was advertised as a miraculous cure, based on stem cells properties, to treat different types of serious and often currently untreatable diseases. The method is not supported by scientific evidence nor clinical trials, yet it was allowed to be given to patients in Italy. Perhaps this is not too surprising, given this is not the first time that Italian authorities have failed to listen to evidence. In the 1990s, Luigi Di Bella was allowed to give patients a cocktail of molecules such as somatostatin, together with vitamins, claiming it would treat any type of cancer.
The Stamina method involves extracting bone marrow cells from the patients, and injecting them back after manipulating the cells in the laboratory. The miraculous properties of the cells are supposed to cure diseases ranging from cardiovascular problems, Parkinson’s disease, multiple sclerosis and Tourette syndrome, to name a few. You can see the full list on the home page of the Stamina Foundation which, in spite of Vannoni’s conviction, is still promoting the treatment.
The non-science that characterizes the Stamina method has been discussed at length. In particular, one of the world’s leading journals Nature has regularly covered the story, exposing and denouncing several related controversies including the use of figures taken from a paper published by other researchers in the Stamina protocol.
So, how could this happen? Well, it is really hard to find an answer… Here, we focus on the role of the media in this story. It is quite a scary role.
The Italian scientific community, and the wider international community, has strongly and unanimously opposed the method, but perhaps failed to communicate the message. The numerous statements and interviews were ineffective when on the other side of the debate it was reality television. As an example, compare how effectively the message is communicated from this very detailed explanation of why the method does not work versus an interview with the mother of a terminally ill child who has no other options left. In the TV context, even a statement from Nobel Laureate Shinya Yamanaka does not sound too convincing: “We sympathize with patients with incurable diseases. However, there is little objective reason to believe that these patients have the possibility of benefitting from a mesenchymal stem cell therapy and treatment decisions should not be made outside of a controlled clinical trial without data on safety and efficacy.”
Instead, an investigatory television programme Le Iene (even if you don’t speak Italian, click on the link to get an idea of what type of programme we are talking about), which devoted regular weekly space to Stamina, became the main channel to discuss the validity of the method. Incredibly, the debate was not taking place among advisory boards or expert panels but on reality TV. Le Iene featured interviews with parents of children with incurable diseases, such as spinal muscular atrophy, declaring they were denied important treatment. For the Italian law, compassionate treatment can be provided for free if the quality has been assessed. The quality of Stamina has never been proven, yet the TV insisted it was not humane to deny hope to these patients. Sadly, the aim of Stamina has never been to benefit patients but, as shown by this recent court ruling, to make money out of their suffering. While the treatment was free to the patients themselves, the public health system had to cover the bills, which were not insignificant.
Then celebrities joined in adding their strong voice in support of Stamina. Clearly on TV, the opinion of a famous singer like Adriano Celentano, whose letter in support of Stamina was published in one of the major Italian newspapers, has much more value to the general public than that of stem cells experts like Professor Elena Cattaneo.
And then the media campaign turned into protests with people marching through the streets of many cities with shocking actions, such as getting themselves chained (even on a cross) in front of the Parliament. While extreme, these cases were not isolated and represented the strong public support for Stamina in the face of a total lack of scientific evidence. And public opinion does have power – a regional court declared that the committee set up by the government to review the case was not objective and its composition should be changed. Hundreds judges in about 180 cases, throughout Italy, ordered that public hospitals should provide Stamina treatment to 64 patients.
Obviously, we are talking about a complex situation which cannot be simplified to a single factor and that needs to be understood in the context of Italian society. Sadly, Italy is not the only country in the word where stem cell treatments are on the market but we do need to travel to other continents to find them. Stamina did not happen far away; it happened in a country that should make sure EU regulations are respected. Reassuringly, we do not see similar cases in Western Europe currently. However, this story strongly exemplifies the power of the media in shaping public opinion. It shows how cases built on emotions are more powerful than those derived from evidence-based facts and how telling people what they would like to hear (e.g. “we have found the holy grail to treat any diseases”) works better than what science has to say.