TOPS CARES: LEUKEMIA & LYMPHOMA SOCIETY

 

People who support the Leukemia & Lymphoma Society and its research efforts are actually funding research for all cancers. “Almost all cancer drugs, period, come from blood cancer research. If it's going to work in blood, in the lab, it's going to work,” said Erika Furlong, executive director of the Kentucky chapter of the Leukemia & Lymphoma Society. LLS is a nonprofit organization headquartered in New York. It began in 1949 and there are one or more chapters in every state (California has seven). The Kentucky chapter serves all 120 counties in the commonwealth as well as southern Indiana. There’s an LLS office in Louisville and one in Lexington.

Since 2017, 56 drugs have been approved by the FDA for blood cancer that then have also gone on to treat other types of cancer. Of those 56, 51 came from LLS funding. Prior to 2017, a typical year would have produced two approved drugs, or four in an outstanding year. “In two and a half years we’ve done 100 years’ worth of drug research,” Furlong said. “Things are moving quickly in the cancer world. I don't think people know that.”

The good news is that research has really ramped up. Unfortunately, blood cancer can’t be prevented at this point. “We rely on our sister organizations that promote mammograms, colonoscopies and other types of prevention,” Furlong said. “We are able to fund more drugs because we are not funding preventions.”

As a nonprofit organization focused on research and patient aid, LLS is searching to cure three diseases in particular: leukemia, lymphoma and multiple myeloma. Leukemia is cancer of the bone marrow and blood. Lymphoma is a tumor originating in the white blood cells and spreading into lymph nodes. Myeloma is a tumor of the plasma cells within the bone marrow. There are several types of leukemia, including ALL and CLL, which stand for acute lymphocytic leukemia and chronic lymphocytic leukemia. AML and CML are the initials for acute myeloid leukemia and chronic myeloid leukemia. There’s also Hodgkin’s disease and non-Hodgkin lymphoma.

“We have had huge strides,” Furlong said. For example, no drug for non-Hodgkin lymphoma had been approved since the 1970s until a big trial in 2014 produced nine pharmaceuticals, giving people more hope.

“Last year we gave almost a million dollars, over $900,000, back to patients for financial aid and co-pay assistance for insurance claims,” Furlong said. When the pandemic hit, the organization quickly developed an Urgent Need program to provide $250 gift cards for qualifying patients.

Furlong herself has family connections to the disease. When she was 23 she lost her 89-year-old grandmother to leukemia, and her aunt and cousin have both been diagnosed with chronic lymphocytic leukemia. Her aunt has been living with CLL for 19 years, which is rather remarkable.

One of the services the LLS organization provides for patients is in legwork and paperwork when it comes to finding clinical trials for patients who are looking for one. There’s no central database of clinical trials accessible to the public. “The National average for clinic trial matching is 5%, which is sad for any kind,” Furlong said. “Ours is a 65% match rate.”

The most recent program the Leukemia & Lymphoma Society is involved with is a $50 million campaign to fund the first master clinical trial in the world on pediatric patients. “Any child that has relapsed from AML would be available to do this trial. We hope to come up with new drugs over the next five years,” Furlong said. “Currently there are four drugs for kids with any kind of cancer; the last one was approved in 1980.”

Locally and nationally, the Leukemia & Lymphoma Society partners with pharmaceutical companies. “Our CEO says we unapologetically accept their funds to turn around and give back to patients,” Furlong said.

The organization has annual galas, family support groups, an online community, the in-school program called Pennies for Patients and a peer-to-peer program called First Connections, among other services and resources for patients and their families. “When we focus on an effort it makes a huge impact,” Furlong said. “We want to shout from the rooftops what we’re doing.”


Posted on 2020-05-11 by By Kathie Stamps
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