Milena

         Roma 22/03/2021

PROOF-HD phase III trial with pridopidine

The testimony of Milena, 57, and her caregiver Fabrizio, 55. 

Milena, when did you discover about HD?

After my brother was diagnosed, 9 years ago. Before that moment, no one in my family knew about HD. I then decided to do a DNA test myself. I learned of the positive result and after doing some research on the internet, I decided to contact Prof Squitieri. 

Is this the first time you participate in a clinical trial?

No, it is not the first time. Three years ago I participated in the LEGATO-HD trial. I have a positive memory of the participation in that trial. I'm glad I went through that journey, it was an important experience. 

What is the main reason you decided to participate?

It's important for everyone. I think it creates a kind of solidarity among patients, we empower each other and support each other in choosing to participate. I kept in touch with a few people who participated in the LEGATO trial. We've shared contacts and keep in touch through emails, texts, and phone calls. I think PROOF-HD is a good possibility. My brother participated in the OPEN PRIDE study. Now he is not here anymore, but I remember that at the beginning of the trial he had clear improvements. 

Fabrizio, what role did you play in your wife Milena's decision to enter this trial?

I decided to support Milena because this is an opportunity for us, for Milena and for me. I have great hope in this molecule and in research. It's a bit of a gamble because you don't know whether you take the drug or the placebo. For me, though, it remains an investment. The hope is that Milena will take the drug and that this, will give her some benefit. Participating in a phase III trial in a center of expertise like prof Squitieri's, where you are followed and controlled at 360 degrees, makes us feel "safe". In addition, for us, participating also means supporting a cause. This way we give our contribution, so that a therapy for all will be achieved. We know that nothing is certain, but we have evaluated the conditions of this trial. 

As a caregiver, I am definitely emotionally involved, but I have tried to do a more rational analysis. Comparing costs/benefits, in this case, I think the scales tip toward the potential benefits.  Another positive aspect of this trial is the location. It is easier for me to take Milena to Rome, to the Mendel Institute. This time I can more easily be by her side all the way. The LEGATO study, on the other hand, took place in San Giovanni Rotondo, very far from home. On that occasion, I had to ask for permission from work whenever she had a visit. It wasn't always easy for me to get them. At the time, I was not yet covered by Law 104. I was afraid to ask for it because I feared possible retaliation or misunderstandings at work. Three years ago, I had to take complete charge of the situation without support. I managed everything between vacations, permits and bureaucratic quibbles, which made everything extremely complicated. Today it's easier: the visits take place in Rome, I benefit from Law 104 and Milena is retired, so she doesn't have to account to anyone.  During the LEGATO study she was still working and her company, rather than supporting her, often hindered her. The firm has not been at all sympathetic to her health needs.