From The Leukemia and Lymphoma Society to Blood Cancer United

The Leukemia and Lymphoma Society, a nonprofit organization that aims to cure blood cancer and improve the quality of life patients, has changed its name to Blood Cancer United in an effort to be seen as more inclusive to a wider range of individuals with blood cancers.

“A lot of patients who have blood cancers don't have leukemia or lymphoma, or they have subtypes of those that they don't recognize as leukemia and lymphoma, so we felt like we were potentially not being as welcoming or as inclusive as we [could be]. Our real purpose is to help everyone who has a blood cancer,” the organization’s chief medical officer, Dr. Gwen Nichols, explained in an interview with CURE.

Author and patient advocate Suleika Jaouad, who has partnered with the organization and is now facing leukemia for the third time in 15 years, told CURE recently that she is appreciative of the name change.

“I was initially diagnosed with myelodysplastic syndrome, which is a rare bone marrow disorder and disease that turns into acute myeloid leukemia,” she said. “I'm thrilled that the name is reflective of all blood cancers, not just the more commonly known ones, like leukemia and lymphoma.”

Transcript

What was the motivation behind rebranding the Leukemia and Lymphoma Society as Blood Cancer United?

Nichols: A lot of patients who have blood cancers do not have leukemia or lymphoma, or they have subtypes of those that they do not recognize as leukemia and lymphoma. So, we felt like we were potentially not being as welcoming or as inclusive as all of our services, information, and our real purpose are, which is to help everyone who has a blood cancer. The number one reason was to try and be more inclusive. The second reason was that we felt that a lot of patients reached us and then said, "I wish I knew about you sooner." We did a lot of research, and it ended up that our name was holding us back. So, we spent a long time — this has been four years in the making; it is not something we decided overnight — but it was something that we said, “Gee, maybe it's worth the turmoil that happens when you change your name to get more people familiar with us, and we'd have some recognition.” I think everyone is one degree of separation from someone who has a blood cancer and may use our help.

Jaouad: I really appreciate the name change. I was initially diagnosed with myelodysplastic syndrome, which is a rare bone marrow disorder and disease that turns into acute myeloid leukemia. So, I'm very thrilled that the name is reflective of all blood cancers, not just the more commonly known ones, like leukemia and lymphoma. From the early days of falling ill in my 20s, I had the privilege of joining forces with Blood Cancer United during a lobbying day on Capitol Hill. My family was a part of Light the Night shortly after my first bone marrow transplant.

I think, like a lot of patients, one of the most challenging aspects of being sick, especially when you're young, is the sense of isolation that comes with such a diagnosis. To feel part of a village, not just of fellow patients and caregivers, but advocates who are doing the good work, means so much because it really does take a village. It is such a cliche to reach for that phrase, but I think when it comes to something like blood cancer, it's a cliche for a reason. You learn that from day one of diagnosis as you get to know the many people who populate that village, be it friends and family, or doctors, nurses, and social workers.

Nichols: Jaouad has such a wonderful, positive spirit. One of the things that is true about blood cancers, and in distinction to other cancers, is that we can't predict when they're going to come. We don't have any screening tests, and so for many people, the diagnosis comes out of the blue.

Suleika’s story and her books that talk about that journey, I think, are very empowering for people because it's terrifying to all of a sudden, seemingly overnight, get a diagnosis of a blood cancer. She is also a survivor who continues to talk and encourage people to get the help they need, and I think that for us is exactly why we're in the business we're in: to provide that help. So, she's a wonderful spokesperson for that.

Transcript has been edited for clarity and conciseness.

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