Majority of 26,000 Calls to LLS Reflect Patient Financial Stress


The rising cost of treatment and care for blood cancer patients has reached a boiling point, according to The Leukemia & Lymphoma Society (LLS), with an increasing number of patients foregoing their medications or reducing the dosage or frequency of their doctor‐prescribed treatments solely for cost reasons. In 2016, LLS’s free Information Resource Center received more than 26,000 calls from patients and families — the majority included concerns about financial stress and difficulties accessing treatment.

The cost of cancer care has been steadily rising and patients are bearing more of the financial burden, paying increasingly larger portions out of their own pockets for their care. These rising costs are found in every element of cancer care: hospitalizations, diagnostic testing, co‐pays and co‐insurance, and the exponentially‐increasing prices of specialty drugs. All indications suggest that these costs will only continue to escalate under present conditions. In fact, the U.S. will spend $158 — $173 billion each year on cancer care by 2020 – a 27 percent to 39 percent increase since 2010.

“One of the worst side effects of fighting cancer is the cost of care, and that situation is quickly deteriorating” said Louis J. DeGennaro, Ph.D., LLS president and CEO. “LLS is on the frontlines of the battle against blood cancers and we are alarmed by the stories that patients and their families are sharing with us about their struggles to access affordable, high‐quality and stable care. We can no longer just quietly advocate on behalf of the blood cancer community — we need to take bold action and call on all stakeholders in the cancer ecosystem to ensure that patients are not the only ones who are shouldering the rising cost of cancer care.”

LLS unveiled today a new public position statement and policy recommendationsrelated to the cost of cancer care, grounded in the principle that patients must have guaranteed access to high‐quality, affordable and stable care. LLS is directly calling on every player in the healthcare system — from patient organizations, drug, device and diagnostic manufacturers, to insurers and pharmacy benefit managers, healthcare providers, hospitals, and state and federal governments – to put patients first by enacting new reforms and lowering overall costs and financial distress for cancer patients.

LLS called for the following specific action steps:

  • Patient Organizations should increase transparency in their relationships with for‐profit healthcare companies;
  • Prescription Drug Manufacturers should adopt innovative payment methodologies that reward positive patient outcomes;
  • Health Insurance Companies and Pharmacy Benefit Managers (PBMs) should direct a significant portion of the savings they derive from negotiated pharmaceutical product rebates directly to patients taking the covered medication;
  • Providers should incorporate cost discussions into treatment planning; and
  • Policymakers should require drug manufacturers to report to the U.S. Department of Health & Human Services (HHS) the initial list price for each medication offered on the market and significant changes in the list price over time.

For its part, LLS is committing to a series of actions to demonstrate transparency regarding its industry relationships and pledges to advocate forcefully for specific policies that guarantee access to stable and high‐quality care. Among the specific steps that it will take, LLS will publicly share the amount of funding it receives from industry as a percentage of total revenue on its website and in its annual report.

“Having cancer is hard enough, and worrying about the cost of the disease only makes the situation worse,” said DeGennaro. “We are unapologetically a ‘patients first’ organization and it’s time that everyone with a stake in cancer care, financial or otherwise, take responsibility for helping people manage this very stressful and complicated disease. Patients’ lives literally depend on it.”

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