February 06, 2023

Children’s Leukemia Research Association Featured on The Nonprofit Voice

Many thanks to The Nonprofit Voice by 100 Women Who Care About Long Island for the opportunity to share the impact of the work being done by Children’s Leukemia Research Association. 

100 Women Who Care About Long Island is a giving circle of local women who want to support nonprofit organizations. They understand that working as a group has a bigger impact than working alone. On this episode, CLRA Director of Operations Tara Coleman is the guest. She speaks about the work of CLRA including Patient Aid and Research Grants and the pandemic impact to the organization and those we serve. 

If you’re interested in listening to the full interview, please go to the 100 Women Who Care podcast.

What’s the mission of CLRA? What advancements have been made?

The mission of CLRA is to find the causes and cures for leukemia. 

We fund a cancer researcher at Dana Farber and she has made great progress in childhood leukemia research. When CLRA was founded in 1965, the survival rates for leukemia patients were low and it is now much higher. That is why we continue to fund the research. We know it makes a difference. Check out the interview on our YouTube Channel.

Tara, could you share what the Children’s Leukemia Research Association does to support the community?

CLRA was founded in 1965 to support research and in the early 2000s, we began our Patient Aid program for children and adults, to help patients cover the costs of medications and copays.

In January 2022, Mark Cuban launched the Cost Plus Drug Company which works directly with manufacturers to offer affordable cancer drugs and other medications. At launch, they offered the targeted chemo pill Imatinib for $47 per month. This drug treats Chronic Myeloid Leukemia and retails at an astounding $9,657 per month. Since then, the price has decreased to $39 per month. CLRA has been referring patients who take Imatinib to this site to save them money. Even if they have insurance, copays are up to $3000 per month so these prices are less.

Tara, you mentioned the Patient Assistance program is for children and adults. Can you tell us about the impact of cancer on families?

It’s devastating. 

Everyone starts with an apology, “I am sorry you have cancer….” but the real impact comes as treatment starts and medical bills are received. Cancer impacts families in big ways. 

Children can’t go to treatment alone, so income goes away so the patient or the parent of a patient, isn’t alone for treatment. Adult patients may not be able or want to go to treatment alone; they may not be able to continue working. All of this puts a financial strain on families. They end up making choices about which bills to pay when the medical expenses add up. 

We hear stories all the time and it’s heartbreaking so we have the Patient Aid program to support patients and families so they can focus on treatment. 

What happening to CLRA during the pandemic?

During the pandemic, we heard about patients who were told their treatment or bone marrow transplants were postponed or canceled because it wasn’t safe for them to be in a hospital. They were safer at home. We also saw an increase in mail-order prescriptions which we thought was interesting. 

The other thing that happened was that researchers weren’t in their labs as much as they had been. They also needed to stay safe and keep their families safe. As a result, we extended grant funding to accommodate their needs given the global pandemic. 

As a team, we continued to review grant applications and patient aid applications. We were able to work remotely to serve. 

Thank you to 100 Women Who Care About Long Island for the opportunity to share the CLRA message!

We understand that when patients come to us, they need help. 
To learn more about Patient Aid for blood cancer patients, call 516-222-1944.