The state of Israel is small. The number of patients diagnosed as GIST patients is estimated at as little as 20 patients per year. The need of GIST patients and their families to obtain updated Hebrew information about the treatments, medications and new developments on GIST cancer-related research, has led to the development of additional tools for the use and service of GIST patients and relatives in Israel.
It happened just 18 months ago. The doctor told me that I have GIST cancer. The news was overwhelming. I looked for all sorts of relevant information that would help me figure out this disease. Although I come from the area of administrative medicine, I had never heard of GIST. It is so rare that only few have heard of it. After many hardships, I came to know a dear person, Mr. Ben Shtang, of blessed memory, who was sick and founded a support group for GIST patients.
Ben recognized the need to share, assist and contribute knowledge about the disease to other patients. Only four months after we first spoke on the phone, Ben passed away.
I immediately decided that the other patients must not be abandoned and I made up my mind to renew the GIST support group activity in Israel and expand the activity of the Organization, registered by Ben just a few months earlier. I tracked down a few other patients about whom I found out through Ben and renewed the support meetings with their help. Reuven Halfi, one of the oldest “veterans” of this disease, was harnessed for the challenging position of the Israeli GIST Patients Organization General Manager.
Together, we decided that in order to promote the activity of the support group, we must take certain steps to spread out the word about the organization to all Israelis. We decided our goal was to track down all Israeli GIST patients and bring them together under the same roof (the Israeli GIST Patients Organization).
We did a preliminary screening of the number of GIST patients in Israel in order to get some general estimate of the overall number of patients. To do so, we used data gathered by Israel National Cancer Registry, the Ministry of Health. To execute the second stage of our plan, we needed a budget. We
approached Novartis, which came to our aid and contributed money for our cause. However, the challenges did not come to an end here. All of the Organization members are volunteer patients, some of whom work and are busy during the day. This is why we founded a virtual office to accept calls of new patients. The office is based on a 24/7 call center, and an Organization member who holds a beeper to receive messages from patients calling the “office” – this step was taken to meet the need of distressed GIST patients to get an almost real-time response. Next, we exposed the entire Israeli population to the Organization through various means. We issued posters and brochures and distributed them in all Israeli Hospitals’ Oncology and Gastrointestinal Clinics. We established and enhanced the relationship with the Life Raft Group (LRG) in the United States and got their consent to translate professional materials taken from the LRG website and distribute them publicly. We established an Internet website (www.gist.org.il) in Hebrew and contacted oncologists to spread the word about the Organization amongst their GIST patients.
The objectives and goals of the organization are:
● Collecting and receiving GISTrelated medical information from national and international centers and delivering it to GIST patients and their families
● Holding monthly support meetings
● Raising public awareness in Israel for the admission of GIST medications into the Israeli health basket ● Promoting medical research on GIST
● Fundraising in order to assist patients and financing the GIST organization activities
● Advising and helping GIST patients concerning their rights in medical institutions and various authorities
● Escorting GIST patients and their families on topics related to the disease.
Being a patient-based organization, our main need is raising funds in order to assist patients in financing medication not indicated as GIST medication, although professional literature may have found them to be potentially lifeprolonging and disease treating medications. To do so we initiated public fundraising campaigns and next year we plan to launch the opening of the Israeli GIST Patients Organization at a conference aimed at all Israeli GIST patients.
We thank Novartis and Life Raft Group (LRG) for their support and assistance in achieving this significant change.