"It's time someone recognized our rights. I've been fighting for this for 43 years," said a few days ago Floriana Melis, a Nuoro native who has lived with five rare diseases for decades and, too often, a dysfunctional healthcare system. "I just want treatment, while I'm alive. Right now, I have to deal with bureaucracy. Even a cardiologist's appointment is a challenge: I've been told it will be discussed again in 2027. That's why I wrote to President Todde: I want her to understand the hardship faced by one of her fellow citizens, a person with 100 percent disability."

The drama

Even though she lives with five rare diseases, there apparently isn't any fast-track treatment for her. Hence, incredibly long waiting lists and a healthy dose of bureaucracy that complicates everything.

The appeal

The 47-year-old from Nuoro is trying everything to improve access to care for those affected by so-called rare diseases. She recently wrote a post-letter to Governor Alessandra Todde, while she was hospitalized in the Rheumatology department at the Monserrato Polyclinic: "Mr. President, I heard kind words and good intentions from you and former Prime Minister Giuseppe Conte during an event organized for the rights of people with disabilities. Today I read and hear further promises. I beg you to try to give me a voice too, by taking the time to listen to what I face every day."

Melis now doubles down: "President Todde stated that she has allocated a lot of money for patients with rare diseases. Well, I used to even take advantage of the advances to travel outside the region. Lately, I've been submitting requests, but they arrive when I'm already in Rome at the Umberto I Hospital. For reimbursements, I also wait much longer than in the past. Those with rare diseases should be protected, not marginalized."

Gianfranco Locci

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