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Leukemia & Lymphoma Society panel explores ‘tsunami’ of financial burdens, potential of immunotherapy
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Patients continue to face a “tsunami” of financial burdens associated with cancer care, but advances in immunotherapy and precision medicine offer much promise, according to participants of a roundtable discussion hosted by The Leukemia & Lymphoma Society.
In conjunction with the roundtable, the Leukemia & Lymphoma Society (LLS) issued its Report to the Nation on Blood Cancer: Leading the Way to Cancer Cures.” The report provides an overview of the major scientific, treatment and policy advances since the organization’s inception in 1949.
The society also issued a public position statement and policy recommendations on the costs of cancer care.
“Advances in immunotherapy, including [chimeric antigen receptor] T-cell therapy, have led to a deeper understanding of how to harness the body’s own defenses to improve outcomes for patients, while precision medicine is providing treatment to the right patients at the right time,” a LLS-issued press release read. “However, as we are getting closer to cures, the cost of cancer care continues to rise.”
Cost of care
Much of the roundtable focused on the financial burden of cancer care for patients and their families, including direct medical costs, patient adherence, psychological behavior and the potential impact on caregivers.
As a result, an increasing number of patients have declined medications or reduced the dosage or frequency of prescribed treatments.
“Patients are faced with a tsunami of financial issues,” Louis J. DeGennaro, PhD, president and CEO of LLS, said during the roundtable.
As the cost of cancer care has increased, patients bear the financial burden by paying larger portions out of pocket, particularly for hospitalizations, diagnostic testing, specialty drugs, copays and coinsurance.
In 2016, LLS’s free Information Resource Center received more than 26,000 calls from patients and families. The majority of patients called due to concerns about financial stress and difficulties accessing treatment, DeGennaro said.
For example, the United States will spend $158 billion to $173 billion each year on cancer care by 2020, a 27% to 39% increase since 2010, according to an LLS press release. The pharmaceutical industry has helped patients who cannot afford treatments.
“We are committed as a sector to step in when there are gaps in insurance and when patients can’t afford a treatment. That is not a situation any patient with cancer should be in,” Randy Burkholder, deputy vice president of policy at PhRMA — an advocacy organization that represents biopharmaceutical research companies, said during the roundtable. “And when we can step in and help, within current federal guidelines, we absolutely want to. That will involve direct patient assistance as soon as possible or support of independent charitable foundations, as well.”
Position statement
In its position statement, LLS called for “every player in the health care system — including patient organizations; drug, device and diagnostic manufacturers; insurers and pharmacy benefit managers; health care providers; hospitals; and state and federal governments — to enact new reforms, lower costs and reduce the burden of financial distress for patients with cancer.
“[The position statement and policy recommendations] are grounded in the principle that patients must have access to high-quality, affordable and stable care,” DeGennaro said. “The cost and the access issue is especially timely because there are so many exciting innovations and advances in treating cancer that are coming into the health care arena.”
LLS called for specific action steps by the various entities of the health care community, stating:
Patient organizations should increase transparency in their relationships with forprofit health care companies;
Prescription drug manufacturers should adopt innovative payment methodologies that reward positive patient outcomes;
Health insurance companies and pharmacy benefit managers 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 HHS the initial list price for each medication offered on the market and significant changes in the list price over time.
LLS announced it will publicly share the amount of funding it receives from the industry as a percentage of total revenue on its website and in its annual report to demonstrate transparency and to advocate policies that guarantee access to high-quality care.
“Every bit along the way lacks transparency,” DeGennaro said. “What we are hoping for is that, through organizations like LLS, we can get all the players in the health care system together, frankly, to have an adult conversation about this and try to understand what the legitimate cost to the patient is.”
Immunotherapy
LLS also focused its roundtable on the innovative use of immunotherapy to treat various blood cancers.
“It’s truly revolutionary and really has created a whole new world of options for cancer, but particularly for blood cancers,” Kenneth C. Anderson, MD, ASH president and program director of Jerome Lipper Multiple Myeloma Center and LeBow Institute for Myeloma Therapeutics at Dana-Farber Cancer Institute, said during the roundtable. “For many decades there has been research. But what really broke things open is the idea that the immune system is really potent, selective and adaptable.”
Panelists discussed the use of checkpoint inhibitors, which “free the T cell to follow its own inclination to kill the cancer,” Stephan A. Grupp, MD, PhD, director of the cancer immunotherapy program at Children’s Hospital of Philadelphia, said during the roundtable.
They also highlighted the potential benefits of chimeric antigen receptor T-cell therapy, which Grupp described as a “brute-force approach” in which T cells are genetically re-engineered to kill cancer cells.
Although the tumor microenvironment is still not fully understood, immunotherapy has evolved dramatically over the past decade.
“Immunotherapy is still in its infancy,” Renier Brentjens, MD, PhD, director of cellular therapeutics at Memorial Sloan Kettering Cancer Center, said during the roundtable. “We like to pretend when a product comes to market that it’s a completed story, but it isn’t. We have a lot of sophistication with a lot of trial and error left to go before we get the results [that will] deliver 100% response rates because that is, ultimately, the goal.”
Precision medicine
As immunotherapy continues to develop, the need to combine each element of treatment has also been a focus among oncologists.
“We need far more targeted therapies directed at specific genetic targets to harness the power of the immune system, and we have to think about prevention and early diagnosis. Sometimes that part gets left out of the equation,” Brian J. Druker, MD, director of Knight Cancer Institute at Oregon Health & Science University, said during the roundtable.
Druker suggested physicians think of cancer treatment as an ecosystem.
“It’s not going to be a one-size-fits-all [approach],” Druker said. “We have to think about targeted therapies and immunotherapies, prevention and early detection. Ultimately, that is going to lead to much greater advances.”
With such advancements, genetics have played a key role in identifying patients who may or may not respond to treatment.
“The genetics can be used, even if we don’t yet have a targeted therapy,” Ross L. Levine, MD, director of the center for hematologic malignancies at Memorial Sloan Kettering Cancer Center, said during the roundtable. “Genetics is also just the beginning. Every cell only uses a fraction of [genetic] information, and using that information is what I call epigenetics.”
Through this, oncologists can study changes in cells caused by the modification of gene expression instead of altering the genetic code itself.
“We have tremendous knowledge, and we now have not only therapeutic ideas, but also the ability to segregate patients into groups [based on] when to use our existing therapies and when to use our innovative therapies,” Levine said.
At the conclusion of the roundtable, the panelists agreed that cancer will one day be cured.
“With an overwhelming yes, we will cure cancer,” Anderson said. – by Kristie L. Kahl
References:
Leukemia & Lymphoma Society. Reducing the cost of cancer care: Policy recommendations from The Leukemia & Lymphoma Society. Available at: www.lls.org/cancercost/policy_recommendations. Accessed on May 3, 2017.
Leukemia & Lymphoma Society. Honoring our commitment to cures and access: The Leukemia & Lymphoma Society is on the side of patients. Available at: www.lls.org/cancercost/position_statement. Accessed on May 3, 2017.