Advocating for meaningful and feasible cost-cutting policy solutions.
With the cost of cancer care rising at an alarming rate, more of the cost burden is shifting to patients, many of whom are then forced to delay or even forego treatment.
Studies show cancer patients with Medicare Part D are five times more likely to abandon their treatment when faced with high cost-sharing. High, year-over-year increases in cancer treatment and care costs will continue to strain the health care system and put cancer care out of reach for more patients. Further, these high costs disproportionately hurt those already subject to systemic racial, social, economic and environmental disadvantages.
We launched our Cost of Cancer Care initiative in 2017, and we continue to advocate for aggressive but feasible cost-cutting policy solutions that would not sacrifice quality care. But to create meaningful and persistent change, all stakeholders—drug makers, pharmacy benefit managers and insurers, health care providers and other patient organizations—must take responsibility and do their part.
To advance this vision, we have:
- Engaged in substantive discussions with House and Senate health care leaders to elevate patient experiences
- Met numerous times with Health and Human Services (HHS) Secretary Alex Azar and his top advisors
- Empowered policy advocates across the U.S., to meet with federal and state policymakers
- Shaped and supported several regulatory changes, to demonstrate vast support for reforms that save money while maintaining access to care
- Invested in several research projects to better understand why cancer care is prohibitively expensive and identify policy solutions to reduce costs
Several of our policy recommendations have been adopted, including:
- Reduction of certain hospital overpayments that promoted hospital consolidation.
- Accelerating lower-cost generic alternatives to branded drugs into the market.
- Leveling the playing field for lower-cost biosimilar versions of costly biologic drugs, and
- Initiating a test of a major Medicare Part D reform that lowers costs for patients and taxpayers.
We’ve called on Congress to enact 31 specific healthcare system cost-saving policies. Learn more. (PDF)
- Reduce hospital payments for all services that can be delivered in less-costly physician clinics.
- Crack down on tactics used by drug companies to extend their monopoly pricing.
- Cut regulations that inhibit the ability of insurers to hold drug companies and providers accountable for patient outcomes and other measures of value.
- Provide the tools for patient/clinician discussions around the value of every treatment options.
- Increase transparency by holding drug companies accountable for high list prices and price increases and cap the out-of-pocket liability for patients for their therapies.
Helping patients raise their voice
Blood Cancer United enables cancer patients to raise their voice by connecting volunteer patient advocates with their policymakers at strategic moments. Blood Cancer United empowers advocates to share their stories and their views with lawmakers — and hold them accountable for policy changes that promote affordable access to care.
News releases and blogs
- February 2020 - Short-Term Health Plans Leave Patients Vulnerable To Major Medical Bills, According To New Research
- October 2019 - Nearly 60% of Blood Cancer Patients Covered By Medicare Delay or Forgo Treatment
- August 2019 - LLS Is Driving Progress To Ease The Pain Of High Cancer Care Costs For Patients
- March 2019 - LLS offers 30+ solutions to address health care costs for patients
- August 2018 - LLS renews call for strong action to ease the soaring cost of cancer care for patients
- October 2018 - New Study Demonstrates Burdensome Cost of Blood Cancer Care
- May 2017 - Majority of calls to LLS Reflect Patient Financial Stress Caused by Rising Cost of Cancer Care
- May 2017 - The cost of cancer care & its impact on patients
Policy recommendations
- Letter to House leaders, June 2019(PDF), Medicare Part D reform on out-of-pocket costs
- Letter to Senate Leaders, March 2019 (PDF), 31 policy recommendations to reduce cancer cost
A patient perspective
Patients Fighting Back Against High Costs (PDF)
These five stories highlight the impact blood cancer patients have when they become advocates for change within their communities.
Navigating the Costs of Cancer Care (PDF)
This infographic shows the constant, often overwhelming financial burden patients face during their cancer treatment journey.
Supported research
Infographic: Blood Cancer Cost Burden and Treatment Rates (PDF)
Published by Milliman, Inc.
We funded research that found that among newly-diagnosed patients with commercial insurance, just 53% receive treatment within 90 days of diagnosis. The rate is even lower for patients with Medicare Advantage and Medicare fee-for-service.
Report: The impact of short-term limited-duration policy expansion on patients and the ACA individual market (PDF)
Published by Milliman, Inc.
We funded this funded study that highlights the major out-of-pocket costs facing patients receiving treatment for lymphoma and other serious conditions while enrolled in short term limited duration health plans. The study also analyzes the risk these plans pose to the sustainability of the ACA-compliant insurance market.
- Infographic: Short-term health plans come up short (PDF)
- Brief: Summary of full report on short-term plans (PDF)
- Brief: Patient impact of short-term plans (PDF)
Specialty Drug Pricing and Out-of-Pocket Spending on Orally Administered Anticancer Drugs in Medicare Part D, 2010 to 2019.
Published in JAMA, the Journal of the American Medical Association LLS-supported study explores out-of-pocket costs for blood cancer patients in Medicare Part D
The cost burden of blood cancer care. Published by Milliman, Inc
We funded this study that explores treatment costs for patients with commercial insurance coverage.
The cost burden of blood cancer care in Medicare. Published by Milliman, Inc.
We funded a study exploreing treatment costs for patients with Medicare insurance coverage.