cml: 'you have to educate yourself so that you can be your own advocate'
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joannie clements (pictured with her husband jerry) was diagnosed with chronic myelogenous leukemia in 2001.
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one of the most critical components of successful and effective health care is the relationship between a patient and their healthcare provider. this includes the ability to communicate openly and honestly when it comes to treatment goals, and for the patient, having a role in decision-making.
in 2022, pharmaceutical company novartis surveyed people living with chronic myeloid leukemia (cml) — a rare blood cancer — as well as the doctors who treat cml. the survey, known as cml sun (cml survey of unmet needs), gathered insights from 361 patients and 198 physicians (hematologists and/or oncologists) in 11 countries (australia, brazil, canada, france, germany, italy, japan, south korea, spain, the uk, and the u.s.) from november 2022 to march 2023. the findings revealed that there needs to be more communication and shared decision-making between patients and treatment providers; patients need therapy options that are both effective and tolerable; and that discussions between doctors and patients should balance quality of life, effectiveness and tolerability of treatment.
healthing’s advocacy & better health content development team went to the cml community to find out what patients, caregivers and healthcare providers thought about the survey findings, how they envisioned the results improving care for people living with cml and other health conditions, and why patients need to be equal partners in decisions made about their care.
this is joannie clements’ story.
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joannie clements was diagnosed with chronic myeloid leukemia in 2001, not long after a broken neck forced her husband jerry into early retirement. their relationship would be put to the test during a harrowing five-year period that also saw both of their mothers diagnosed with terminal illnesses. “we said to each other, ‘this is either going to kill us or it’s going to make us stronger,’” joannie says. it clearly did the latter as the couple, who met at a medical conference in san diego, celebrated their 30th wedding anniversary on dec. 8, 2023. their twenty-two-year cml journey didn’t just teach them what really matters in life, it also led to the start of a support group to help others living with cml.
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when were you diagnosed with cml, joannie?
joannie: i was diagnosed with cml in 2001. it was a rocky road at the beginning. a few days after i was diagnosed, i was put on a new treatment that had just been introduced. the drug was brand new and nobody really knew what to expect. all of the doctors i saw didn’t know a lot about it.
what has been the biggest challenge of living with cml?
joannie: many of my issues have changed over the course of my twenty-two-year journey. initially, my medication was brand new and the first challenge was the 12 to 14 side effects that came with it. i still have one or two side effects that have never gone away but that’s the price you pay for living, i guess. one of the other challenges was the financial toxicity — the medication i needed was extremely expensive. we had to find financial assistance because it was several thousand dollars a month out-of-pocket. the next challenge was getting used to the idea that you have a chronic disease that you have to manage every day. they told me i would be taking this drug for the rest of my life and that’s what i’ve done and it has been successful.
jerry: one of the insidious parts of cml is that you don’t look like you have cancer. you look very normal and nobody can tell what’s going on in your blood or your body. when we went for financial aid, one of the administrative people said, ‘oh, this is for people who have cancer.’ joannie looked her right in the eye and said, ‘but i have cancer.’ the woman said, ‘but you don’t look like you have cancer.’ so, i asked if this aid was for people who looked like they have cancer or for people who were paying thousands of dollars a month in medical bills because that’s how much treatment costs. if they’re not sensitive to the needs of what’s really affecting patients, we can’t have good outcomes because more barriers get thrown in the way every day.
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do you feel your doctors were good at communicating with you throughout your journey?
joannie: this has changed over time. at first, i had a doctor that misdiagnosed me for six months, so that wasn’t a good experience. he did not listen, he did not communicate. then i went to a research hospital and we formed a good relationship with a team of doctors. the communication remained open and that was a good thing because we all had so much to learn. they knew about cml but they didn’t know about my new medication. at that time, the life expectancy of a cml patient was three to five years. i was two to four years in. now that we have longevity, they’re able to learn more about cml and all the mutations that may or may not come with it. they’re learning how to help patients live successfully with better outcomes. that has progressed over the past 22 years and has everything to do with communication between the patient and doctor.
there was no real conversation of side effects or quality of life in those early days?
joannie: no, they just didn’t know. they only knew about the side effects that had presented themselves during clinical trials. but as time went on, we discovered more and more side effects that may or may not be long-term. i discovered that the thyroid was affected by the drug that i was on and we had to prove it so that we could send that information to the drug manufacturer, which we did and now that is listed among its side effects. but it was a learning process that required a lot of communication with doctors. i keep harping on that, but it’s so important to avoid misunderstandings. if you don’t understand something, talk to your doctor about it.
did you have a say in your treatment decisions?
joannie: i feel like i did, but that’s because i was assertive and had already formed bonds with my healthcare team. we were learning together and we all knew it. i was lucky to have a team at one of the world’s best hospitals. i think things are improving and the cml sun survey is helping tremendously because it was not only about patients and by patients, it was about doctors and by doctors. the perspective of the doctor is different from the perspective of the patient. before the focus began to turn to communication, doctors were just trying to get you healed or get you cured.
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do you think patients should have a say in their treatment?
joannie: i think that’s one of the most important considerations between a doctor and patient. if the patient is told to take a pill, they will. but if the side effects are bad, they might not take that pill. so that’s going to affect their outcome. patients have to feel comfortable enough to tell their doctor if they missed taking their medication and the doctor has to be understanding and find ways to help the patient be more adherent. but, as i like to say, not all doctors were created equal.
do you think doctors and patients are on the same page?
joannie: we weren’t at the beginning. if this survey had been done 10 years ago, those answers would be different, guaranteed. but that’s changing because of amount of time that has passed, the things we now know and how we have learned to communicate. i’m pleased to see the results.
what advice would you give to patients to help them avoid some of the things you went through?
joannie: the first thing you have to do as a patient is educate yourself so that you can be your own advocate — you know your body better than anybody else. by doing that, you gain knowledge and you’re able to ask better questions. you have to learn everything you need to know about cml. there are ways to do that: the leukemia & lymphoma society has a wonderful educational program and its free for patients with blood cancer. learning about cml helps build confidence between the patient and the doctor and helps the patient take ownership of their disease.
jerry: part of what the cml sun study showed is a disconnect between perceptions of what is important. i really believe this disconnect is a lot less apparent when you talk to a cml specialist — somebody who sees hundreds of cml patients. it’s a rare disease. if you go to a community doctor who only sees one or two cml patients, how can they possibly hook into all of that knowledge? all they can do is go to the treatment plan that is prescribed by nccn (the national comprehensive cancer network) or asco (the american society of clinical oncology). they may give you a choice of three pills and think one is the best because it’s the one they’ve had the most experience with, not necessarily because it’s the best one for that patient. in doing that, they can actually widen the trust gap with a patient who may be afraid to question that god-like doctor for fear they might upset them. but we always tell patients: it’s your disease, it’s your treatment, it’s your life. you’re entitled to ask as many questions as you need to feel comfortable. in doing that, as joannie said, you start to develop trust with the doctor in what they’re prescribing and the doctor develops trust in you. that two-way communication gets strengthened by getting over the fear of talking to the doctor.
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how important do you think the findings from cml sun are?
joannie: i think the survey helped doctors think about whether or not they’re asking patients about the things that matter to them. it also helped open the eyes of patients who may not have thought about these issues themselves. overall, i think it was very important in terms of helping to improve the quality of life of patients.
tell me about the cml buster foundation.
joannie: i started a cml support group in 2003 and we have met every single month since then, except for once and that was when the world stopped during covid. the month after that, we started again, but it was virtual, instead of face-to-face. just before covid hit, we had been looking for ways to form groups in other parts of the u.s. because cml isn’t represented across the states the way we think it should be. now i have four virtual groups and one face-to-face group. when we realized we needed some financial assistance to help these patients, we decided to form the cml buster foundation.
jerry: we formed the non-profit in 2019 for the purpose of expanding our mission to help patients. we learned more about rural populations and discovered that different regions of the u.s. have the same access challenges that many low- and middle-income countries have. it’s been a worthwhile challenge for us to formally organize these little family support groups. we’ll see patients for a few months, they’re doing really well in their treatments and then they kind of go away for a while. then, all of a sudden, they’ll reappear a year later and say, ‘listen, what do you know about pregnancy because we want to raise a family now that the disease is under control.’ we’re able to educate and lead them to the right resources. we get calls every day from somewhere in the country from someone who has been newly diagnosed. there are only about 4,000 to 8,000 of those a year, depending on the year — it’s a very small population. when joannie was diagnosed, there were only about 12,000 patients living with the disease. now there are around 120,000, so people are living a normal lifespan and managing all the challenges that come with living longer. it does our hearts good to help even one patient and we get to see so many of them come back years later saying they have families and sending us pictures of their kids who have graduated from college.
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joannie: we just celebrated our 20th anniversary of being a family support group. it has been very enlightening and fulfilling. it has kept me going all these years.
how are you doing now, joannie? how is your quality of life?
joannie: my quality of life is very good. i work at it, it doesn’t come naturally. it has everything to do with my caregiver (jerry) and the new doctor that has joined my team — he’s learning well.
and my family, of course, they’ve all helped, they’ve all been supportive. do i wish that i could find a cure, that i didn’t have to take those pills every day? absolutely. i would love to be able to stop taking the pills that make me sick and give me other side effects. that’s not my path, but i can live with what i have. i love life — i want to keep living. i have eight great grandchildren. can you believe that?
joannie and jerry clements, and the cml buster foundation, can be reached at joanwclem@gmail.com and on facebook.
to read more patient stories, hear from cml specialists and find out about the cml survey of unmet needs, click here.
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