Massimo took part in an interview in which he was asked about his role within the network and his expectations. Below is a transcript of the interview which has previously featured in the EURO-NMD monthly newsletter .
a. Tell us a little bit about yourself
“I am an IT engineer, I am married with two kids. In my job I deal with databases, big data and digital health. In my free time, I like to go to the seaside since I live close to the coast and I follow my kids in their sports activities.
About 10 years ago, after having pneumonia, I was diagnosed with CIDP, the most frequent dysimmune neuropathy. Then I was not longer able to stand and I lost sensitivity in the limbs. After spending 10 months in and out of the hospital and receiving treatments, I was finally able to recover almost completely and I have not had any relapses so far. One year later, I decided to build the Italian website about the pathology and in 2012 I set up the Italian patient organisation for dysimmune neuropathies – CIDP ITALIA – because I thought we needed a legal instrument to communicate incisively with the governmental counterparts.
One of the first and main outcome achieved by the association was to obtain the authorisation from the Italian drug regulation agency (AIFA) for IVIg and the transient authorisation for SCIg. Now the number of Italian patients on subcutaneous therapy is likely the highest within the European countries. In the recent years, the average time of diagnosis in Italy has been reduced to a few months and the accessibility to various treatment options allows patients to have a very good quality of life.
In the coming years, I would like to continue to combine my job with the engagement for our organisation. In particular, I would like to commit myself to realise self-monitoring systems for peripheral neuropathies.”
b. What is your role in EURO-NMD?
“I found myself involved in the EURO-NMD almost without realising it but thanks to a series of parallel events. The neuropathies have been included in the reference network for the neuromuscular diseases exactly at the constitution of the EURO-NMD which has a clear prevalence of the muscular component.
I acquired information from EURORDIS about the setting-up of the ERNs and I followed the calls for patient representatives. Both my experience and the results achieved by the Italian association seemed to me a useful resource to be shared with others, but above all I was interested in understanding whether elsewhere in Europe there were opportunities for better care and diagnosis that could be brought to Italy.
c. What are your expectations of the Network?
“EURO-NMD was created to standardise rare diseases diagnosis, treatments and management in all the EU countries. This means both identifying good practices and collecting data.
We need to work to get epidemiological data on various diseases in different countries of the Union, we need to know the average diagnosis time for the diseases and to better understand whether there are treatments and health services that are still not accessible in some countries.
It is also important to understand if a national network for rare diseases exists in each country and how it works, if there is a global management of it and if rare patients have or do not have a preferential path when it comes to care access.
For example, we seem to understand that SCIg for CIDP is not accessible in all countries. But uniformity is needed even when we consider the methods for treatments administration. For example, with regard to IVIg, in the same European authorisation, self-administration at home is allowed in some countries, while in others, including Italy, it is available in hospitals only. Finally, in Italy if a person has a diagnostic suspect about a rare neuromuscular disease, there is a network with a dedicated helpline to call in order to enter the diagnostic path. Sometimes we receive requests from patients living in other European countries who are looking for help and we assume that elsewhere this network does not exist or, if it exists, it is not easy accessible for patients. Therefore, the greatest expectation is to create a capillary system in all the EU countries so when a person enters this network for rare neuromuscular diseases he/she can have the same identical opportunities and the same level of attention, regardless where he/she lives.”