- That disease is no longer incurable
"He/she died from an incurable disease": this is how the mass media announce that a VIP has died from cancer. And in saying this a seemingly small, but actually great injustice is done every time to cancer patients, who in 50% of the cases are rightly promised that they would be cured of the tumor affecting them. The above sentence is wrong, since tumors are not incurable, but curable diseases. Every year about 250,000 new cancer cases are diagnosed in Italy and they include over hundred different diseases as to etiology, natural history and prognosis; half of them can be cured with the available treatments, that is surgery, radiotherapy and chemotherapy. However, it is no time to jump for joy: half the patients still die and for some forms of cancer the mortality rates are almost 100%.
It cannot be denied that these figures are blunt and may be hard to believe, but when the true characters of this tragedy - the patients - come into play things change completely.
The Centro di Riferimento Oncologico di Aviano, in the province of Pordenone, is one of the seven scientific cancer institutes in Italy. Upon the 10th Anniversary of its foundation the Scientific Manager of that time, Prof. Silvio Monfardini, current manager of the medical oncology unit in Padua, and myself decided to call a meeting with all cancer patients who had been treated during the first ten years of the institute's activity. This would have given them the opportunity of discussing the most important problems they had to face. Actually two unforgettable meetings took place at Christmas 1993 and 1994, in which hundreds of patients and their families, journalists and important personalities, as Cardinal Tonini, participated. Intense emotions were uttered and new subjects were dealt with. As a result of this ANGOLO, the Italian Association for ex cancer patients and cancer survivors, was born.
A few years later, in 1997, another association for cancer patients and their families and friends, called AIMaC, was founded on the initiative of Prof. Francesco De Lorenzo. They are the only cancer patient associations in Italy. They cooperate to give a hope that they will recover to those who have cancer and are struggling against the disease and also to support their families through the direct experience of those who had and defeated cancer. Their objects are as follows: to be a link between cancer patients and the general population; to make the public, health professionals and policy-makers aware of the problems cancer patients have to face and to evaluate and defend their civil rights with respect to employment, retirement pension, assistance to the patients and even to those who have been cured but can equally be discriminated.
AIMaC is a member of ECL, the association of the European Cancer Leagues, and UICC, the International Union against Cancer, renowned organizations on which Italy was not represented at all. In close cooperation with CanceBACUP, the British Association for Cancer United Patients, their families and friends, AIMaC has printed a collection of booklets on various forms of cancer and on the main aspects of living with the disease. They use a simple but scientifically sound language to give the patients and their relatives and friends the information they need to fight off the disease and understand that they can be the winners.
Moreover AIMaC has produced a videotape on chemotherapy and radiotherapy, which Mara Venier and Peppino di Capri, two Italian TV stars, have been honored to introduce. As the English experience has shown, the videotape is of great help to supplement the information received from doctors.
Then AIMaC uses also the web (www.aimac.it) to give on-line information to the patients and their families. The web site helps also to answer the numerous e-mails that are received daily: a group of oncologists reply immediately to the most pressing inquiries. In the near future AIMaC is going to cooperate more closely with the medical oncologists and other health professionals who take care of cancer patients.
Hence, even in Italy cancer patients are ready to make a contribution to improve therapies and the quality of life through their direct experience, providing a valuable support to the medical oncologists and to other health professionals, like nurses and psychologists, who play a major role.