Chronic myeloid leukemia surveys signal unmet needs for patients


Only 19% to 26% of patients with chronic myeloid leukemia (CML) discuss treatment decisions with their doctors, a survey by Swiss-based pharmaceutical Novartis has revealed.

The Unmet Needs in CML Survey (CML SUN), which investigates how patients and physicians feel about current treatment options, shared decision-making, and treatment satisfaction, also found that 39% to 43% of patients receive information about only one treatment from their physician. them, according to reports from patients.

“CML SUN is designed to address critical unanswered questions between people living with chronic myeloid leukemia and clinicians, such as approaches to treatment options, differences in efficacy and tolerability priorities, and effectiveness in communicating goals to each other,” said Fabian Lang, SUN CML Steering Committee member, study author, MD, Goethe University Hospital, Frankfurt, Germany.

The study revealed that the goals of treatment for patients and doctors are different; patients are focused on stopping the progression of the disease and improving their quality of life, while doctors are more concerned with the efficacy of the treatment given.

Current treatment affects quality of life, patient reports

Although patients and doctors have agreed that the efficacy of the treatment is up to the mark, patients have overcome problems such as coping with side effects, having to deal with physical and emotional exhaustion, stress about the effectiveness of the treatment, difficulties in exercising and maintaining a social life – factors that lead to decline their quality of life.

Additionally, 48% to 66% of clinicians reported that they provided patients with only one treatment option, and almost half of them claimed they received little or no input from patients regarding treatment decisions across therapy lines.

Lang said: “Because CML has, in many ways, become a chronic disease thanks to available treatments, it’s important to understand patient and clinician priorities, especially as they change across therapeutic lines. SUN’s CML insights will help us continue to evolve the way CML is managed.”

Lisa Machado, member of the CML SUN Steering Committee, founder of the CML Canada Network and executive producer of, said: “People living with chronic myeloid leukemia should be able to talk openly and honestly with their doctor about the goals of their treatment, how the effects side effects of treatment affect their lives, and their emotional and mental well-being.”

“We have come a long way in terms of how we treat CML, with innovative therapies that are enabling people to live longer and better lives with this disease. However, there is still much work to be done, especially to ensure that the doctor-patient relationship is based on shared decision-making, a clear understanding of quality of life requirements and hopes for the future.”

Data for this study were collected from Australia, Brazil, Canada, France, Germany, Italy, Japan, South Korea, Spain, UK and US Later this year, the final analysis of the survey will be presented.

Current treatments for CML

CML is a type of blood cancer in which stem cells produce too many white blood cells (WBC) due to a genetic mutation – often characterized by the presence of an abnormal chromosome known as the Philadelphia chromosome in blood cells – in the bone marrow. It is estimated that 8,930 people will be diagnosed with CML by 2023, in the US alone, according to the American Cancer Society.

Currently, targeted cancer drugs such as tyrosine kinase inhibitors (TKI) are prescribed, because they inhibit tyrosine kinase, an enzyme that helps the uncontrolled growth of retarded white blood cells in CML.

Other treatment options include chemotherapy as well as stem cell transplant.

Novartis mission to handle CML

Expanding treatment options, Novartis developed Scemblix, the first CML therapy to act as a STAMP inhibitor (specifically targeting the myristoyl ABL pocket), which suppresses the activity of the enzyme BCR-ABL1 kinase, a type of tyrosine kinase.

Scemblix was approved by the US Food and Drug Administration (FDA) in 2021 and by the European Commission in August 2022, for the treatment of adult patients with Philadelphia chromosome-positive CML.


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