Leukemia & Lymphoma Society battles blood cancer, helps patients NEDEEDEDSS
In 1944, after the death of their son to leukemia, Rudolph and Antoinette de Villiers decided to start an organization dedicated to curing what was then “the incurable.” Now the Leukemia & Lymphoma Society, the organization continues this same mission.
Sean Simpson, executive di- rector for Oklahoma’s chapter of the society, said he has known many people who have succumbed to blood cancers.
“The day after I accepted the position at LLS, my daughter’s baby sitter was diagnosed with lymphoma,” Simpson said. “Her cancer was really stubborn, and her treatments included chemo radiation and two stem cell transplants, but her family never lost hope.”
In an interview, Simpson spoke about the impact the Leukemia & Lymphoma Society is making in regards to cancer research and patient support.
Q: What is the Leukemia & Lymphoma Society’s mission?
A: The Leukemia & Lymphoma Society has a clear mission to cure leukemia, lymphoma and myeloma and improve the quality of life of patients and their families. We’re the world’s largest voluntary health agency dedicated to blood cancer. Funds that we raise go toward blood cancer research around the world as well as providing free information and support services to our patients and their families.
Organizationally, we invested $75 million in research last year and spent more than $50 million to help our patients afford treatment. Just here in the state, we had right about $400,000 dedicated to help Oklahomans afford their cancer treatments.
Q: Whom do serve?
A: Blood cancer doesn’t discriminate based on age or any other matter. We serve everyone in the state of Oklahoma with a blood cancer diagnosis, as well as their families.
Q: Why did you get involved?
A: I lost two of my best friends growing up, to leukemia, when we were all in our 20s. I was also really interested in the research that LLS funds, in particular, our therapy acceleration program. I just really like the science of things and to see where we’re investing and to see the results of how we help our patients. The biggest selling point is that nearly 80 percent of LLS expenditures go to our mission. We’re definitely putting our money where it’s needed the most — for cures and people to be able to afford their treatment.
Q: What types of ways do you provide support?
A: The best advice I give patients when they’re first diagnosed is don’t go to the Internet. We’ve got all the latest information from the point of diagnosis. We have a copay assistance program, support groups and education seminars. It’s really about getting patients and their families access to this information.
One of the programs I actually like the most is our First Connection Program. The program takes a patient who is in remission and partners them with someone who’s beginning their journey. If you’re a 46-year-old man, we can actually find someone around the same age and disease class who can serve as your mentor.
Peer to peer is so impor- tant. With how things have transpired from a technological standpoint, the ability to FaceTime, text and email, you can still provide that same support and comfort even across the state.
Q: How has your research benefited patients?
A: We basically made it a goal to fund research to get it out of the lab and into the clinic so we could get it to our patients faster.
For example, in chronic myeloid leukemia in 1975, the five-year survival rate was 17 percent. In 2005, it increased to 59 percent. We had a drug that we funded through our Ther- apy Acceleration Program, and overnight it turned that 59 percent to you take a pill everyday and you live a normal life.
Nearly half of all cancer drugs that were approved by FDA (Food and Drug Administration) since 2000 were developed for blood cancer patients, and our advances now are being utilized for other cancers. LLS isn’t just curing blood cancer, we’re curing cancer period.
Q: What are your future and long-term goals?
A: Cure cancer. That’s definitely what our immediate and long-term goal is.
The more opportunities we have to be there from day one with an individual, the fewer patients and their families have to go it alone. When you get your diagnosis, you go through shock and fear and then you’re to the point of, “Where do you go?” It’s really important to be in charge of your life and not allow cancer to take the lead.
The other part is that it’s not enough to conduct an aggressive research agenda. We want to make sure patients can afford their treatments, and part of that is we need to stop unfair cost-sharing practices from keeping crucial medications out of reach.
Full circle
After two years, the baby sitter of Simpson’s daughter reached remission. Simpson said it has come full circle for him.
“This summer I’m going to be able to see her get married,” Simpson said. “It’s been a long two years, but to be able to start my journey at LLS with someone who is very close to me being diagnosed and to see what’s transpired is pretty amazing.”