“For those living with cholangiocarcinoma, a rare liver tumor, an extra day of life is a lot. There are therapies such as pemigatinib that represent hope for us patients, but there are other targeted drugs that are not yet available in our country. The problem is to make them accessible to everyone because they improve the quality of life and give us patients a little more hope in life”. This was stated by Paolo Leonardi, president of the Italian cholangiocarcinoma patients’ association (Apic), on the sidelines of the press conference on cholangiocarcinoma which was held today in the Chamber of Deputies and during which an amendment was presented to favor precision oncology.
“This tumor has a fundamental characteristic that makes it particularly dangerous, it grows and doubles every 28 days – notes Leonardi -. We know that once diagnosed it is necessary to undergo surgery within 4 months, after which everything becomes much more difficult and complicated. Not only that, you need to go to a specialized center to avoid making mistakes which would then make the situation irreparable”. However, “more than half of the specialized centers in Italy are in the North, we find some in Central Italy while there are very few in the South. Sometimes there are centers that have a good oncologist or a good surgeon, if they have an oncologist they don’t have a surgeon or a radiologist. This is why the ideal would be to go to specialized centers and refer the treatment to the hospital closest to the patient’s place of residence”.
“I have cholangiocarcinoma and I live in Ragusa. There is no specific center in my city, even if there is a good oncologist in Messina. I go to Verona for the operation rather than Bologna, Padua, Milan or Rome. It happens to me as well as to thousands of other patients. But for treatment we shouldn’t go back to these cities because it’s already hard to live with the disease and the cost of all this operation is not cheap”, he concludes.
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