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The Leukemia & Lymphoma Society (LLS) Is Driving Progress To Ease The Pain Of High Cancer Care Costs For Patients

For patients who forgo or delay cancer treatment because of high out-of-pocket costs, LLS is driving policies that break down barriers that prevent access to lifesaving treatments

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.”

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The Leukemia & Lymphoma Society is driving progress to ease the pain of high cancer-care costs @LLSusa

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 https://www.lls.org/cancercost.

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.

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 www.LLS.org. Patients should contact the Information Resource Center at (800) 955-4572, Monday through Friday, 9 a.m. to 9 p.m. ET.

For additional information visit lls.org/lls-newsnetwork. Follow us on Facebook, Twitter, and Instagram.

Media Contacts:
Andrea Greif
[email protected]
914-821-8958

Melissa Valentino
[email protected]
914-821-8389

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Policy Progress

  • Out-of-pocket costs in Medicare Part D. Cancer patients in Medicare Part D face thousands of dollars in out-of-pocket costs for even a single drug, and these patients are five times more likely to abandon their cancer treatment than patients who face low cost-sharing. In 2019, all House and Senate committee leaders have endorsed capping out-of-pocket costs for cancer patients in Medicare Part D.
  • Value-based agreements. Following a blood cancer diagnosis, patients encounter costs related to everything from lab tests, to long hospital stays, to costly new drugs. Reforms are necessary to ensure that the prices paid for services like these reflect their value to patients. In June, a Senate health committee passed a bipartisan bill to prevent hospitals from abusing their negotiating power to drive up costs for hospital care. The Trump Administration is drafting reforms to outdated rules that prevent health plans from using value-based agreements to adjust payments higher or lower for drugs and other treatments, based on how well those treatments work for patients.
  • Point-of-prescription value tools. Patients and doctors deserve to know whether a treatment is worth the cost to the patient, but existing rules make it impossible to know how much a drug will cost a patient. For patients covered by Medicare Part D, Medicare will soon require that Part D plans provide clinicians with information about how much a patient’s drug treatment will cost at the pharmacy counter. This allows doctors to discuss with patients the cost of prescriptions and their potential value before the patient heads to the pharmacy.
  • Competition in the Rx marketplace. LLS has urged policymakers to make targeted reforms that will increase competition in the prescription drug market in order to lower drug costs. For example, LLS advocates for reforms like the bipartisan CREATES Act— passed by the House in May and currently making its way through the Senate—which would prevent drug companies from using tactics that make it impossible for generic drug makers to introduce cheaper versions of costly drugs.