Patients who are involved in their disease and active in it in terms of knowledge and decision.making, live longer, and have a higher quality of life. And while every patient should be involved in his or her own disease, this is all the more true in serious or chronic diseases like cancer.
Out of this understanding, Giora Sharaf, a patient with chronic myeloid leukemia, founded the Khalil HaOr organization – an organization that accesses knowledge, helps mentally, helps exercise rights, and in fact gives patients with various leukemic diseases “360 treatment” – everything a leukemia patient needs Beyond medical treatment.
“Our main goals are divided into four,” says Giora. “The voice of patients is everywhere it needs to be heard – the health funds, the Ministry of Health, the basket committee, etc. The bottom line is that there is much more than what happens in front of the doctor or in the treatment room, and these are really life.saving matters.”
If there is anyone who knows firsthand the importance of knowledge and sharing for patients, it is Giora himself. 22 years ago he developed CML, a chronic myeloid leukemia, and was told he had three years left to live. “It was a terminal illness at the time and there were no life.saving treatments,” he says. “I started reading about the disease online and I got black in the eyes from what I read. But I did not give up. I started looking for alternatives online, and came to a discussion group of patients at CML, through which I became acquainted with a new drug in preliminary clinical trials. “And the rest is history: 22 years later I’m still here, and feeling good.”
Beyond receiving knowledge and assistance, are there other benefits to membership in the association?
“Our motto is that together it is easier,” he replies. “Like family. Sharing gives a lot of strength. When you meet other patients, you can share and receive tips that are not usually heard from doctors. The best advice is usually received from patients who support patients.”
Can you give an example of this help?
“Certainly, there are endless examples of life that have been taken, literally, by the association’s members themselves,” says Giora and demonstrates: Drugs give the drug at no cost to save lives.There were some cases we were able to convince the drug company to give drugs to patients, even after they refused the attending physician’s request.Over time we realized that it is difficult for drug companies to say “no” when referring patients themselves or representing associations. “Few patients who received life.saving drugs thanks to us and continued to live with them until the drug entered the basket, a process that can take two to three years and be the difference between life and death.”
Does the transfer of information come from the association or between the patients and themselves?
“Both and. We hold a lot of conferences, lectures and meetings on a variety of leukemia diseases. Even when we attend international conferences, we zoom in so that everyone can participate. Even without our mediation there is a lot of sharing – we have Facebook groups closed to all diseases, with thousands Patients, and there is a lot of interaction, questions and answers, mutual help and support.It works great.
“A case that illustrates the importance of membership in the association and the connection between the patients is that of a young, ultra.Orthodox patient who had one of the rarer blood cancers. She wrote to us that she was really in the dark from the moment she was told she had no cure “There she learned what she was dealing with. She also met another patient, as young as her, who gave her the hope and the strength to understand that she could continue to live with the disease as well. It was a great light for her.”
You said one of the goals is to get the patients’ voice out. How is it done?
“We believe that patients’ voices must be heard wherever decisions are made about them, so we are in constant contact with all parties – the health funds, the Ministry of Health and doctors,” says Giora. To this end, we bring the voices of patients to the development of clinics, with studies we conduct, for example, we conducted a large international study on patients’ adherence to medication, and reached very important conclusions for physicians. “Identify them in advance and pay attention to them in this aspect. There are many other studies, all of which aim to allow doctors different perspectives that they did not have on patients, and that can help with treatment and its success.”
What do you need to do to join the association?
“We believe that joining the association is a kind of obligation for patients with leukemia, and that membership in the association is an integral part of the treatment,” he concludes. “We just know how much it helps and how important this information is. “If they had the information in advance. Joining is simple – you can call us at 054.6060422, write us an email – [email protected], or register through the website. We are waiting for everyone, each and every one of the patients with leukemia.”
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