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LLS Is Driving Progress To Ease The Pain Of High Cancer Care Costs For Patients

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(Rye Brook, N.Y. August 7, 2019) – The cost of cancer care continues to rise at an alarming rate and is projected to reach $173 billion by 2020, a 39 percent increase from a decade ago. A growing portion of these costs are being shifted to patients. As a result, some patients are delaying or even forgoing potentially lifesaving cancer treatment. The Leukemia & Lymphoma Society (LLS) calls on key healthcare stakeholders to make changes that would help offset these costs. While some important progress has been made to improve patients’ access to affordable, high-quality and stable care, much more needs to be done.

“Too many cancer patients are forced to make life-or-death treatment decisions based purely on the cost of their care,” said Louis J. DeGennaro, Ph.D., LLS president and CEO. “The Leukemia & Lymphoma Society has the reputation and convening power to bring together stakeholders across the healthcare system to work together to break down barriers that stand between patients and their cancer treatment. Patients must have access to the treatments they need to survive, and that’s why LLS is committed to doing its part to help address the root causes of this critical problem.”

The cost of cancer care affects many patients, including those with health insurance. LLS, the world's largest voluntary health agency dedicated to fighting blood cancer, has found that, typically, the cost of treating blood cancer is significantly higher than the costs associated with treating many other cancers. Patients with blood cancer are often forced to pay thousands of dollars per year in copays and other cost-sharing. These costs often continue for years as patients who survive their cancer often suffer long term health conditions that require treatment and follow-up care. LLS hears from patients and families about their struggles to access affordable, high quality and coordinated care and strives to help them through policy initiatives and support.

To learn more about the challenges patients face and what LLS is doing to drive change, please visit

LLS Drives Policy Change

LLS calls on policymakers to address this critical issue by advancing the policy changes most likely to drive down costs, including policies that can break down barriers to competition in the drug and health provider markets, empower consumers to make decisions based on value, and promote payment systems that incentivize high-value care. In March, LLS put forward 31 policy recommendations aimed at lowering the cost of cancer care while still protecting patient access.  Now, six months later, progress has been made on nearly 75 percent of these recommendations, including out-of-pocket costs, especially for those enrolled in Medicare Part D, value-based agreements, so that the cost of service reflects its value, and competition in the marketplace, that will allow generic drugmakers to introduce less expensive versions of costly drugs sooner. (See sidebar for more policy details).

In addition to important policy changes, LLS urges policymakers to ensure that patients have access to meaningful health insurance coverage, so that patients today can afford the costly treatments necessary to surviving a cancer diagnosis. In particular, LLS calls upon lawmakers to limit the spread of junk insurance plans, which pose a dangerous risk to patients and consumers alike by requiring them to pay extremely high costs.

“It’s really important that people know when they’re buying these short-term insurance plans, they’re often not there in the way you think they will be. At the time, I was on a short-term insurance plan. We were getting collection letters and denials day after day from coverage that I thought was supposed to be there for me and it was not there when I needed it the most.” - Callan Kreidel, Cancer Survivor & LLS Advocate

“My twin sister Alyssa has been my primary caregiver throughout this experience. The funds we received from LLS’s Urgent Need program helped us pay for a babysitter for her children so she could accompany me to a clinical trial that could potentially save my life.” - Brooklyn Aaron, Cancer Patient & LLS Volunteer

LLS Helps Patients in Additional Ways

LLS offers emotional, educational and financial support to patients and families affected by blood cancer. Here are some of LLS’s Financial Assistance Programs that help offset expenses:

  • Co-Pay Assistance: LLS offers financial support toward the cost of insurance co-payments and/or insurance premium costs for prescription drugs. Patients must qualify both medically and financially for this program.
  • Patient Aid Program: LLS provides financial assistance to blood cancer patients in active treatment. Eligible patients receive a $100 stipend.
  • Urgent Need Program: LLS, in partnership with Moppie’s Love, launched the Urgent Need Program to help pediatric and young adult blood cancer patients, or adult blood cancer patients enrolled in clinical trials, who are in acute financial need. The program provides eligible patients assistance for non-medical expenses including rent, mortgage, lodging, utilities, childcare, elder care, food, transportation, car repair, car insurance, phone service, and acute dental work related to treatment. Eligible patients receive a grant of $500, once within a 12 month period.

About The Leukemia & Lymphoma Society 
The Leukemia & Lymphoma Society® (LLS) is the world's largest voluntary health agency dedicated to blood cancer. The LLS mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world, provides free information and support services, and is the voice for all blood cancer patients seeking access to quality, affordable, coordinated care.

Founded in 1949 and headquartered in Rye Brook, NY, LLS has chapters throughout the United States and Canada. To learn more, visit Patients should contact the Information Resource Center at (800) 955-4572, Monday through Friday, 9 a.m. to 9 p.m. ET.

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Media Contacts: 
Andrea Greif 

Melissa Valentino