I recently posted on the dangerous situation with the Stamina Foundation. I discussed the controversy surrounding it that has impacted scientists, politicians, the media, and patients.
Stamina’s unproven stem cell treatments in Italy should be of concern to everyone across the globe in the stem cell field. For example, here in the US where I live, there are similar things going on to Stamina too.
I asked Professor Michele Simonato, MD of the University of Ferrara, Italy, who is very familiar with the Stamina situation for his take on it.
Below is a letter he wrote me about it.
My personal feelings, shared I believe by most of the Italian scientific community, are a mix sorrow, anger and gratitude.
The first feeling is sorrow for patients and their relatives who live in desperation for diseases that medicine cannot yet treat. Their suffering and frustration are beyond words. They deserve our participation and respect, and impose to put all our strengths and courage in our research. I know many more scientists ready to spend nights in the lab, ready to see their hypothesis fail after the last verification, than pseudo-researchers that try to make a career with superficial experiments. We must respectfully say to the patients that we do not have any solution ready, but are determined to put all our efforts to find it.
So the second feeling is anger. Anger against those who take advantage of desperation – the most horrible deception that a human being can do to another. As you know, ninety percent of phase III studies in neurology fail. Working on a new therapeutic approach for years, making an idea grow and find experimental and early clinical support, and finally seeing it fail is a huge frustration. But doing serious research means accepting this possibility, because everything must be done to ensure safety and efficacy of any new therapy. Moreover, scientists are looking for ways to increase the rigor and the efficiency of this process. Initiatives in this sense have been undertaken by several scientific societies on diseases like Alzheimer, stroke, ALS, epilepsy (the initiative I coordinate), and others. This means that international research and Stamina are like trains running in opposite directions. The risk that Italy could take the Stamina train is reason of anger for most Italian scientists, who feel the need to raise their voice and defend science against deception.
Therefore, the last feeling is gratitude toward all those that support these ideas. Top scientific journals like Nature, blogs like yours, but also Italian media like the Turin newspaper “la Stampa”, that coherently demonstrate to carefully evaluate the news and their sources, and do everything to provide an accurate information to the citizens. A constructive dialogue between people in science, politics, teaching and media will be essential for the development of a better future.
Professor of Pharmacology and Toxicology, Department of Medical Sciences, University of Ferrara, Italy
Vice-president, Italian Institute of Neuroscience
Chair, joint Task Force of the International League against Epilepsy and the American Epilepsy Society for the development of new anti-epilepsy therapies