In a Sea of Healthcare Professionals, A Small School of Patient Voices
Walking the hallways of the San Diego Convention Center Friday morning, scoping our path for the upcoming 66th American Society of Hematology Annual Meeting, I was told, “Get ready, because tomorrow we’re going to be like fishes swimming upstream.” I can’t help but think how that metaphorically represents our group in so many ways.
Physically, this weekend, ASH will be attended by over 30,000 healthcare professionals—including academic myeloma specialists, community oncologists, scientists, pharmacists, nurses, and learners. Then also, less than 1% of those here will be patients and care partners—individuals not directly working in the field but passionate about the progress it makes. A small but mighty group that wants to take the information shared and spread the good news.
Cognitively, the International Myeloma Foundation has been swimming upstream, challenging medical norms to ensure that the patient’s voice is heard. We’ve been bringing a team of support group leaders for almost 20 years and are happy now to see our friends and other patient advocates coming. CoMMunally, different organizations, pharmaceutical companies, and providers are working to amplify the patient voice. I hope to focus on the quality-of-life impacts, inclusion efforts, and real-world data during ASH this year.
As a collective, we all will leave ASH more eMMpowered, educated, and enlightened. As a nurse, I’ve been to medical conferences before, always leaving feeling ready to make big changes in cancer care; as IMF Director of Support Groups, coming to ASH with the myeloma Voices Team my head is spinning with ideas before we even start; my heart pounding ready to work with our amazing team to strengthen our leaders’ voices so that tomorrow we can have a world where every myeloma patient can live life to the fullest, unburdened by the disease.
Jenn Wieworka DNP, RN, OCN (She/Her)
Director, IMF Support Groups
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