Israeli researcher recommends emotional support for CML patients

“We know the data about stopping the treatment, we have all the clinical data. Doctors know who can stop and who can’t. But we don’t know the feelings of the patients,” said Giora Sharf.

Cancer (Illustrative) (photo credit: PIXABAY)
Cancer (Illustrative)
(photo credit: PIXABAY)
Israeli patient advocate Giora Sharf explores in a new research paper how the quality of life for patients undergoing treatment for chronic myeloid leukemia (CML) can improve if doctors ask them how they are coping with anxiety that can come with cessation of treatment.
He wrote the paper, titled “Treatment-free remission in chronic myeloid leukemia: the patient perspective and areas of unmet needs” and published in the prestigious medical journal Leukemia, with other authors who are all patients advocates.
Sharf, who was diagnosed with CML more than 20 years ago, is the first author on the paper and is the co-founder of the CML Advocates Network, which connects more than 100 patient organizations in 93 countries. He is also the director and founder of Halil HaOr Association for all blood cancer patients in Israel (https://halil.org.il/).
He was given two to three years to live when he received his initial diagnosis, but beat the odds by “becoming an expert on my disease” and making sure he got enrolled in trials for an experimental drug abroad that saved his life.
A former businessman who worked in the hotel industry before his diagnosis, he now devotes himself to advocating for patients and lobbying the healthcare system, both in Israel and abroad, for “patient-friendly treatments.” He works to give the drug companies and health authorities “the patient’s perspective” and aims to give patients a better quality of life by changing policy.
His new paper focuses on how patients cope emotionally with treatment-free remission (TFR), which occurs when they have what is called a “stable deep molecular response” and no longer need ongoing treatment involving tyrosine kinase inhibitors. This drug treatment carries a risk of potentially serious side effects, but many patients who stop the therapy are fine, as Sharf himself has been since he stopped taking it over six years ago.
“We know the data about stopping the treatment: We have all the clinical data. Doctors know who can stop and who can’t. But we don’t know the feelings of the patients,” said Sharf. “Doctors know the clinical data, but they don’t always look at other aspects of patient care. We need to make sure the doctor treats the patients and not their disease.”

PATIENTS OFTEN experience withdrawal symptoms when they stop the treatment, similar to what drug addicts go through when trying to quit. Because of these symptoms, Sharf said, patients may decide to go back on the medication, because the withdrawal process can be very painful and stressful. “There’s a lot of fear and anxiety involved in stopping treatment,” he said.
However, he feels that if doctors were more attentive to their patients’ emotional needs, asking them how they feel and offering them support, more of them might decide to stay off of the medication – and those who decide to go back on it would at least have a less upsetting and isolating experience. As he studied the issue, he realized there was a need for solid research to explore this phenomenon.
So, with his co-authors on the paper: Celia Marin, Jennifer A. Bradley, Zack Pemberton-Whiteley, Felice Bombaci, Rita I. O. Christensen, Bahija Gouimi, Nigel B. Deekes, Mina Daban and Jan Geissler – all CML patients' advocates themselves from around the world who stopped treatment – he designed a study that was conducted with more than 1,000 patients in over 68 countries.
The research shows that 56% of patients reported fear or anxiety during treatment discontinuation, while only 7% of patients were asked if they needed support during this period. When patients had to re-initiate treatment, 59% felt scared or anxious, and 56% felt depressed. Some 26% of re-initiated patients received emotional support at this time, while 60% of patients experienced withdrawal symptoms while discontinuing treatment, 40% of whom reporting that they were not fully supported by their doctor in managing all the symptoms.
Some 62 of the patients in the study were in Israel. Sharf found that 80% of them did not feel that their doctors offered them enough support dealing with the withdrawal symptoms.
He is working hard now to get the word out to doctors about how they can help their patients’ emotional well-being, and he is currently busy setting up a webinar with some of the top CML doctors in the world. The organizations he works with are distributing pamphlets to doctors in dozens of languages. And publishing an article in a prestigious journal such as Leukemia has a real impact, he said.
“A few doctors have said to me, ‘They turned down my paper – how come they took yours?’ They have definitely taken notice,” he said. “Once, I would write a letter to the Health Ministry talking about what medicines should be included in the health basket. Now, we do research about how the new treatment affects the quality of life of the patient.
"Efficacy and safety are very important, but QOL [quality of life] is important as well," Sharf concluded. "This approach gives patients power.”