The Leukemia & Lymphoma Society® (LLS) Renews Call for Strong Action to Ease the Soaring Cost of Cancer Care for Patients

The Leukemia & Lymphoma Society® (LLS) Renews Call for Strong Action to Ease the Soaring Cost of Cancer Care for Patients

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“While some headway has been made this year to address increasing out-of-pocket costs faced by cancer patients for their treatments and care, far more action is needed to address the financial toxicity that adds to the stress of a cancer diagnosis for patients and their families,” said Louis J. DeGennaro, Ph.D., LLS’s president and CEO. “As the world’s leading nonprofit dedicated to fighting blood cancers, LLS is uniquely positioned to facilitate this collaboration among players in the healthcare ecosystem and to advocate for patients. We’ve invested more than $1.2 billion in cutting-edge cancer research, resulting in lifesaving treatments and cures for some patients. But new treatments can’t help patients who don’t have access to them. We must do more to help break down the cost barriers to treatment.”

Progress Report on the Cost of Cancer Care

As an organization that puts patients at the forefront, LLS is engaged in discussions with stakeholders across the cancer healthcare system – doctors and hospitals, policymakers and legislators, insurers, pharmacy benefit managers and drugmakers – to find ways to lessen the burden for patients.

In May 2017, LLS put forward more than two dozen potential policy solutions and other recommendations aimed at reducing the cost of care and improving transparency across the healthcare system, from ideas for lowering the costs of prescription drugs to restructuring payment models. Some of these include:

  • Encouraging patients and doctors to have a frank dialogue about the costs and benefits of each treatment option;
  • Adopting more innovative reimbursement models that reward treatments that provide better value than other available options;
  • Promoting competition in the prescription drug marketplace in order to drive down drug prices.

Some policy changes that have the potential to relieve certain cost pressure points have been adopted or are being considered by legislators and regulators. For example, the U.S. Food and Drug Administration (FDA) has begun to speed its review of generic drugs, providing potentially less costly alternatives for patients. Another example is a new law that will reduce out-of-pocket costs for Medicare Part D patients who choose to use drugs known as biosimilars, medicines derived from a biological source that is similar to another already approved medicine. Also regarding patients’ out-of-pocket costs, LLS has played a significant role in advancing state legislation known as “oral parity” laws. Often, cancer patients face much higher cost-sharing for oral treatments purchased at a specialty pharmacy than those received via infusion in a hospital or clinic. These laws guarantee more equitable coverage. On January 1 of this year, Arkansas became the 43rd state to require insurance plans to provide this critical protection for cancer patients.

According to Gwen Nichols, M.D., LLS chief medical officer, “LLS is pushing for more relief for patients.  For example, LLS is advocating for policymakers to eliminate some of the perverse payment incentives that lead hospitals to acquire private physician practices, a decision that typically hikes patient copays.”  

“When cancer patients are fighting for their lives, the last thing they need is financial distress,” said Nichols. “LLS receives thousands of calls each year from cancer patients and their families about financial stress and difficulties accessing treatment. It is clear that we still have a very long way to go to find solutions. Through our Cost of Cancer Care initiative, we are pushing hard to advocate for change across the healthcare system so patients can focus on their survival, not their finances.”

Insights from the Patient Community

To be truly meaningful, progress on the policy side must translate into positive impact on the lives of cancer patients. Patients who responded to questions posed on the online LLS Community platform, a network of 8,000 blood cancer patients and caregivers, as well as patients who have volunteered as LLS advocates, confirmed they are still struggling to afford their care.

Three-quarters of the 235 respondents to a posted question said they worry about paying for their cancer care or that of a loved one. While many said their insurance covers much of the cost, high co-pays and deductibles and the fear of losing their insurance weigh heavily.

“We are worried all the time,” said one respondent. “My husband’s cancer meds cost $12,000 a month. We have Medicare Part D. We needed to hit catastrophic at $5,000 before the drug dropped down to $600 a month. So much for any savings in retirement. But his life is worth it. It’s just worrying in the middle of the night that affects me.”

LLS Community respondents cited other financial concerns, such as having to choose one treatment over another to save money, having a loved one not start or complete a recommended treatment because of cost, selecting a standard chemotherapy over a more costly targeted oral therapy and even delaying treatment in order to make financial arrangements.

Click here to read more about how cancer survivors and LLS advocates are taking action against the rising cost of cancer care.

Overview of Progress on Addressing the Cost of Cancer Care

A number of policy reforms have been implemented over the past year or are under consideration that will improve patients’ access to affordable, high-quality and stable care. LLS worked with other advocacy organizations and stakeholders to support these changes. Some of these are:

  • Generic Drugs: The FDA has sped up the review of generic drug applications, which has already begun to help to drive down the cost of purchasing certain drugs.
  • Biologics: A new law will begin to prevent Medicare Part D patients from paying more when they switch from an expensive branded biologic drug to a cheaper “biosimilar” version. 
  • Drug Rebates: Medicare regulators have endorsed reforms requiring that patients receive at least a portion of the prescription drug rebates that the Medicare Part D plans get from drugmakers.
  • Site-Neutral Payments: The Department of Health and Human Services endorsed requiring equal payments to healthcare providers for some services, regardless of whether patients are treated in a hospital or a physician’s office, which would lower patients’ out-of-pocket costs and reduce unnecessary Medicare spending.
  • Cost Transparency: Pharmacy benefit managers and electronic health record vendors initiated a collaboration that gives doctors and patients transparency on drug costs during the prescribing process.
  • Value-Based Payment Arrangements: In June 2018, the FDA removed many of the regulatory obstacles that prevented insurers from making decisions about payments for drugs based on their value. The agency clarified how drug companies should communicate pertinent information about the products to insurers so they can establish more beneficial payment structures for patients.
  • Medicare Donut Hole: Congress passed legislation that will close the “donut hole” in the Medicare Part D program a year ahead of schedule, which will help patients bear less of the costs for particularly expensive medicines. Patients will see reduced out-of-pocket drug costs beginning in 2019.
  • Oral Parity Laws: Oral parity, or guaranteeing equitable cost-sharing for cancer therapies purchased at a specialty pharmacy and taken orally and those received via infusion in a hospital or clinic, continued to advance with Arkansas being the latest state to approve such a law. Today, 43 states and the District of Columbia have enacted oral parity laws, and LLS played a significant role in these advances.
  • State Out-of-Pocket Win: Thanks to lobbying by LLS and others, Colorado adopted a policy requiring that at least 25 percent of plans offered by insurers have no deductible for drugs; also, these plans may charge only a predictable co-pay for drugs, rather than coinsurance. Because coinsurance requires a patient to pay a percentage of the cost of a drug, it typically results in extremely high out-of-pocket costs for patients.

LLS Continues Work to Drive Policy Change

While some progress has been made over the last year, more work remains to be done. LLS continues to engage with policymakers and participants in the healthcare ecosystem. LLS is encouraged to see the rising levels of engagement by various stakeholders to begin addressing these challenges to help restrain the growing costs of cancer care. LLS intends to intensify its efforts, focusing on several key reforms that have the potential to help cancer patients.

  • Value-based Payments: LLS will continue to advocate for payment arrangements for prescription drugs based on their value to patients and programs that incentivize value-driven care decisions by doctors and hospitals.
  • Generic Drugs: LLS is working collaboratively with policymakers to remove barriers that prevent generic drug manufacturers from being able to develop and bring generic and biosimilar versions of costly brand drugs to market.
  • Medicare Part D Cap: LLS will continue to press lawmakers to cap the amount Medicare Part D beneficiaries must pay out of their own pockets to obtain their medications—a proposal endorsed by both the Trump Administration and key Democratic Congressional leaders.
  • Provider Reimbursement Reform: LLS urges Medicare officials to further leverage tools like the Oncology Care Model to test additional reimbursement reforms that reward doctors and hospitals for providing high-quality, efficient oncology care.

About The Leukemia & Lymphoma Society

The Leukemia & Lymphoma Society® (LLS) is the world’s largest voluntary health agency dedicated to fighting 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. For additional information visit Follow us on FacebookTwitter, and Instagram.


Linda Heaney 


Andrea Greif

(914) 821-8958

SOURCE The Leukemia & Lymphoma Society

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