The Leukemia & Lymphoma Society Offers Research, Advocacy and Patient Support

When it comes to advancements in treating blood cancers, 2017 was a particularly exciting year, with well over a dozen new therapies or indications approved by the Food and Drug Administration (FDA). The Leukemia & Lymphoma Society has played a role in many of these new drugs or medication uses at some point throughout their development and approval process.

“The Leukemia & Lymphoma Society exists to create a world without blood cancers. We work tirelessly to find cures and ensure patients can access the lifesaving treatments they need,” Gwen Nichols, M.D., chief medical officer of The Leukemia & Lymphoma Society said in an interview with CURE. “When someone experiences the fear and uncertainty of a cancer diagnosis, we are here to provide hope, compassion, education and support.”

The LLS has been doing just that since its inception in 1949, when it was dubbed the Leukemia Society, and then the Leukemia Society of America. Once the nonprofit expanded its base, the name changed once again to what patients and advocates nationwide know as the Leukemia & Lymphoma Society (LLS).

In the past two decades alone, the LLS has invested more than $40 million into researching chimeric antigen receptor (CAR) T-cell therapy, which involves removing immune cells from patients, engineering and multiplying them in a lab, and reinfusing them so that they can better fight cancer. This support made the LLS a player in the approvals of Kymriah to treat children and young adults with acute lymphoblastic leukemia (ALL) and Yescarta, which is used to treat large B-cell lymphomas.

“Each time we see a new therapy approved is very gratifying for us at LLS. Each new treatment approval is a significant advance,” Nichols said.

When the LLS believes that the amount of drug research and testing being conducted is not sufficient to meet the needs of patients with specific blood cancers, its experts jump in and create the trials themselves.

In October 2016, the organization launched a Beat AML Master Trial. The program brings together scientists, cancer centers, pharmaceutical companies, a genomics company and the FDA with the goal of creating precision medicines for acute myeloid leukemia, which until recently was treated with a one-size-fits-all approach.

“Through our Beat AML master trial, the LLS hopes to continue this momentum” Nichols said.

The targeted drugs approved were Mylotarg (gemtuzumab ozogamicin) to treat newly diagnosed adults with CD33-positive relapsed or refractory AML; Rydapt (midostaurin) to be used in combination with chemotherapy for patients with AML that is driven by a FLT3 mutation; Idhifa (enasidenib) to be used in patients with AML with the IDH2 mutation; and Vyxeos (daunorubicin plus cytarabine) for patients with secondary AML.

Despite those successes, the LLS knows that there is still work to be done. The group recently announced that, in 2018, it will provide $46 million to support 87 new research grants.

“We are supporting the next phase of CAR-T and gene therapy and more precision medicine research, and we are putting more resources toward myeloma this year and into the future,” Nichols said. “In addition to our Beat AML trial, we’re also funding work in other areas of AML, including immunotherapy.”

While the LLS is a powerhouse in the scientific field, currently supporting more than 250 research grants worldwide, it also places an emphasis on providing direct support to patients with blood cancers — be it on the phone, through clinical trials or on Capitol Hill, where it encourages policymakers to push legislation that will ensure that patients get the quality care that they need and deserve.

One key way the LLS does that, according to Nichols, is through its Information Resource Center, a free tool that connects patients with health care professionals who can answer their questions about their conditions and financial issues and give up-to-date information about recent scientific breakthroughs. The LLS also offers a support service whose experts work individually with patients and their caregivers to help match them to clinical trials.

Regardless of the amount it has accomplished, the organization’s leaders don’t anticipate an opportunity to rest in the immediate future..

“While we’ve seen tremendous progress in fighting blood cancers, the need is still urgent, which is why are we laser-focused on raising funds to support research,” Nichols said.

To learn more about the LLS, visit http://www.lls.org