medicina personalizzata cura malattia di Huntington

Having the same disease doesn't mean to be the same patient: towards an era of personalized medicine

“To care for another person, in the most significant sense, is to help him grow and actualise himself… Caring is the antithesis of simply using the other person to satisfy one’s own needs.”
(Mayeroff, 1971)

Again this year, we were invited to participate to the annual international event dedicated to Patient Associations promoted by Roche : the International Experience Exchange with Patient Organizations (IEEPO 2020), entitled "From Chance to Choice: Creating the Future of Healthcare Together ". Central topic: personalized medicine.

The event was scheduled to take place in Berlin from 17 to 19 March, but the global emergency of Covid-19 infection did not make it possible. For this reason, it was organised a "Virtual Q&A webinar": a virtual session, during which the Roche’s CEO Severine Schwan answered to the patients organizations’ questions. 
Serverine Schawan invited the participants to look at this difficult period as an opportunity to rethink the healthcare system and the therapeutic trials taking into account digital and virtual instruments, which have an  enormous potential in promoting access to therapies. In other words: telemedicine is the future, perhaps Coronavirus will just accelerate the ongoing process.

The central theme of the meeting was the promotion of a personalized medicine: treatments and clinical evaluations tailored according to each individual patient. The same diagnosis made to two different people doesn’t result in a same response to a therapeutic treatment because, even it affected by the same disease they are still two different people. Medicine today is moving towards a specific treatment based on the characteristics of each individual.
For a long time this approach was discarded because it was considered too expensive. However, a more in-depth analysis reveals that, if the drugs are administered only to those to whom they are truly effective, there would be a huge saving for the national health service and a general reduction of the disease’s social cost. 

The evidence requires us to rethink the therapeutic treatment in these terms: in order to provide the most appropriate and effective treatment, it is necessary  the direct involvement of patients and the in-depth study of all their clinical, genetic and biological characteristics. Patients and their organizations need to co-create the care process, making available information about their health and their biological samples.

The more data collected, the more patient characteristics are known, the greater the possibility of identifying and selecting a personalized and effective approach.
For these reasons it is important to participate to observational trials such as Enroll-HD and HD-Clarity.