The Leukemia & Lymphoma Society (LLS) is unapologetically “patients first.” Our cures and access agenda mandates that we invest in cutting edge research to advance cures and ensure patients have access to affordable, high-quality and stable care.

We at LLS are very concerned that many blood cancer patients tell us that they are not able to access lifesaving treatments due to the high cost of care. Last year, our free Information Resource Center received more than 26,000 calls – the majority included concerns about financial stress and difficulties accessing treatment.

In fact, healthcare premiums increase annually, along with annual deductibles and out-of-pocket costs. According to The Centers for Medicare and Medicaid Services (CMS), out-of-pocket costs represent 11 percent of total healthcare spending.

Further, while the cost of drugs makes headlines almost daily, and accounts for 10 percent of health expenditures by patients according to CMS, it is just one element of cancer care causing stress and impeding access to treatment. Yet drug prices, especially for specialty cancer drugs, are too expensive for patients.

We believe that patients should not be solely liable for the increasing cost of cancer care.

Each player in healthcare delivery – from patient organizations, drug, diagnostic and device manufacturers, to insurers and pharmacy benefit managers, healthcare providers, hospitals, and state and federal governments – must work together to put cancer patients first by enacting new reforms and lowering overall costs and financial distress for them. As the world’s leading non-profit fighting blood cancers, LLS is uniquely qualified to call upon the key players in the healthcare ecosystem to develop and advocate solutions for patients that truly foster and demonstrate value-driven care.

Our advocacy for patients takes on a new urgency in this time of uncertainty about issues related to healthcare costs and coverage. The potential for changes in healthcare coverage and access to treatments adds greater anxiety to an already uncertain situation, and underscores the role, responsibility and impact LLS has for cancer patients.

LLS’s position on the cost of cancer care is grounded on these guiding coverage principles for patients:

Cancer patients must have health insurance to access the care they need. Their lives literally depend on it. LLS will continue to work to ensure policymakers put patients first, by preserving existing patient protections and enacting new reforms to help make affordable coverage a reality.

• Guaranteed – Cancer patients must have the right to purchase quality, affordable insurance to help them access the care they need.
• High-Quality – Cancer patients must have the confidence that every insurance plan will cover minimum benefits and include necessary providers.
• Affordable – Cancer patients must have a framework of protections and assistance that together limits their premiums and out-of-pocket costs.
• Stable – Cancer patients must not lose the guarantee of existing patient protection for a pre-existing condition as well as for essential health benefits, without simultaneously receiving the guarantee of a new protection that will ensure continued access to necessary healthcare.

For more details on LLS’s Principles for Meaningful Coverage click here.

Approaches to Solutions to Achieve Patient-Centered, Value-Driven Care

To guarantee cancer patients have access to high-quality, affordable insurance coverage, healthcare stakeholders and policymakers must address the unsustainable growth in healthcare costs. LLS believes this can be done by advancing the core tenants of value-driven care:

• Promoting transparency
• Focusing incentives on value
• Driving competition
• Returning savings to patients
• Fostering patient-centered innovation
• Incorporating patient preferences

Advancing these tenets will require leadership from policymakers and engagement from all stakeholders in the ecosystem, including patients. Specifically, LLS calls upon the following stakeholders to embrace their responsibilities by taking the following actions:

• Patient Organizations must promote patient assistance that allows patients to access necessary care without encouraging high prices or unnecessary utilization; and, embrace reforms aimed at promoting disclosure of financial relationships between patient organizations and healthcare stakeholders.
• Prescription Drug Manufacturers must partner with payers to base payments on patient outcomes; ensure their prices reflect the value of their services, both as a product enters the market and over its lifecycle; and, embrace reforms aimed at promoting a competitive marketplace for off-patent drugs.
• Health Insurance Companies and Pharmacy Benefit Managers must leverage payments to providers and medical technology innovators to reward quality care and positive patient outcomes; direct the savings they derive directly to patients and consumers; avoid benefit designs that erect barriers between patients and necessary treatments and put short-term savings ahead of long-term patient wellbeing; and, develop new financing models for breakthrough curative treatments.
• Doctors, Hospitals & Other Providers must avoid consolidation decisions that increase costs to patients and the system; and, ensure their prices reflect the value of their services, including their impact on patient outcomes.

For its part, LLS will take the following steps to demonstrate its commitment to patients:

To promote transparency across the cancer care ecosystem, LLS will publicly share the amount of funding we receive from industry partners on our website and in our Annual Report. We already list the professional affiliations of our volunteer National Board of Directors on our website, and will publicly share our policies related to conflicts of interest, industry sponsorship and donations and whistleblower protection. LLS benefits from industry support to provide lifesaving therapies and free education and resources to patients. Industry support does not influence our mission agenda.

For more details on policy recommendations advanced by LLS click here.