• JOAN

    Myelofibrosis (MF)
    MPNRF Patient Impact Council

    Joan Yatsko was diagnosed with primary myelofibrosis (PMF) in December of 2019 at age 60. “After careful follow-up, identification of a JAK2 mutation, increase in symptoms, anemia treatments, and an increase in blasts, I was headed to stem cell transplant (SCT),” she recounts. She received stem cells from an unrelated donor in February of this year.  

    “I am doing well and on the road to recovery,” reports Joan. She is also on the road to helping MPN Research Foundation bring the patient experience to the broader MPN community, including early in the investigational and commercial stages of research and drug development.  

    Trained as a physician’s assistant (PA) and retired from a career in the pharmaceutical industry, Joan’s interest in serving on the MPNRF Patient Impact Council is a product of both her personal and professional histories.  

    “My research interests are divided into clinical trials and retro/prospective analysis,” she explains. She would like to see more clinical trials both for MPN patients who are candidates for SCT and those who are not eligible.   

    “For those who qualify for SCT, I would like to see trials that focus on the potential to decrease the serious side effects of transplant and improve successful outcomes,” For non-candidates, including those not yet ready for transplant, she talks about the ongoing search for more specific targets for disease modification. “These therapies should focus on impacting the underlying disease, course of disease progression, and include improvements in quality of life, survival benefits, plus have limited effects on healthy blood counts (i.e., anemia).”  

    Ultimately, she knows more therapy options can reduce the number of transplants. “There are so many people that don’t qualify for transplant. There’s so many people who are scared of a transplant. There are so many people who are affected by the after effects and consequence of a transplant.”  

    What is she referring to when she speaks about an increase in retro/prospective analysis? “Based on the rarity/variety of MPNs, and the difficulty of getting patients into clinical trials, it could be beneficial to utilize anecdotes retrospectively or prospectively to help uncover data that would not be achievable with a trial.” This is due to the difficulty of enrolling people in clinical trials, the limited MPN patient pool, and the challenges of meaningful studies taking long periods of time, preferably over decades.   

    “After spending most of my career in the pharmaceutical industry with experience in drug development strategy and clinical trials, I understand the necessity and difficulty of getting patients into trials and I advocate for improving recruitment,” she says.   

    The idea of increasing the use of existing data, for example the 10-year experience of patients taking ruxolitinib, is currently gaining traction in the scientific community. It also speaks to an MPN Research Foundation initiative to build a comprehensive MPN database for long-term use and analyses.     

    Within the research community, Joan’s advocacy reinforces the critical importance of the MPNRF Patient Impact Council’s role – guiding our research initiatives and the selection of funded projects and priorities. She always puts this question front and center: How quickly might this impact patients?  

    “My connection to MPNRF helped me to learn more about current treatments and clinical trials and led me to be matched to a trial for my SCT. This is a wonderful opportunity for me personally, to utilize my experiences to give back to the MPN patient community and the MPN Research Foundation,” says Joan.   

    These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera, and Myelofibrosis. It does not represent the views or opinions of anyone associated with MPN Research Foundation. Please consult your doctor before taking any action to manage your health.

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