Camilla found herself face to face with death, and to push it back she agreed to undergo paid infusions in the private cancer center Villa Margherita in Rome, the city where she went to live with her boyfriend Daniele. And it is he who, while Camilla undergoes therapy every 3 weeks, delivers the check for 15 thousand euros to the cash office of the health facility.
The objectives. The same doctor who shook his head a month ago complimented Camilla and encouraged her: “Let’s go ahead, you can do it.” The goal is to conclude the monoclonal therapy and then access the trial that should start in 2022: ”
I would be a sort of patient zero, I could help write a new important chapter in the medical-scientific literature and therefore help those who are in the same condition as me. : Daniele and I want to create a
Foundation to support the many patients struggling with diseases for which there are no treatments covered by the national health system and who risk dying because they do not have enough money ». Like her, who always manages to look ahead, with a moving smile, with a desire to live that she deserves to be rewarded. © RESERVED REPRODUCTION
Camilla’s future is in reserve. The money tank is almost finished and the light on indicates that autonomy is now very low. With the money you have left you will be able to do the venous infusion on September 2 and then another one, three weeks later.
But after? “After I don’t know,” says her sweet voice from her coming from Carbonia (Sardinia). No money means no infusions of the monoclonal antibody with an unpronounceable name which costs 12,000 euros a time, which must be administered every 21 days and which has been preventing the worst for eight months.
Without that drug, Camilla’s life will slow down, her 29 years will be at risk and the tumor can no longer be kept at bay. «In January – she says – my conditions were so serious and we were so desperate that we said: let’s try. And we started a fundraiser ». When you say “we have” you mean you and the man with whom you have been sharing your life for nine years, Daniele. “I was very moved by so much generosity,” she says.
From January to today, the people who accepted her appeal on her social networks or in the newspaper La Nuova Sardegna have donated almost 124 thousand euros. Survival. And, above all, a clear improvement in clinical conditions.
But infusion after infusion the donations are almost finished, also because each time the administration takes place in Rome in a private clinic and therefore with additional costs in addition to the drug.
In theory, the monoclonal antibody in question would be a life saver to be obtained for free; in fact, this is the case with some diseases. But the Medicines Agency has not yet authorized the free administration of Ptld, the disease that Camilla suffers from, which is essentially a tumor, a monster “given” by the anti-rejection drugs she needed since – at 15 – she was transplanted The liver.
It all started 20 years ago, when she was 9 years old. She often bleed from her nose and her mother, a good nurse, had her undergo thorough checks. “Severe autoimmune hepatitis,” the doctors said. At first under control, then less and less. Until the liver transplant.
“From then on I thought I could finally start living again.” But no. She’s been doing pretty well for six years but then here’s the monster. Since then, the PTLD has presented itself three times. The first two beat a retreat thanks to chemotherapy. At the third time, the classic treatments were wavering and there was no medical literature to indicate the right way: the cases in which she returns for the third time are very rare in the world. What to do? At the end of 2020, tests showed how sensitive Camilla was to a certain antibody. So here’s the way out.