Protecting Blood Cancer Patients from Medical Debt
Over the last several decades, medical and scientific advances have led to the development of new therapies for blood cancer – therapies that have helped improve the five-year survival rate from about 15-20 percent to 50-70 percent, depending on the type of blood cancer. However, not every patient can access these new therapies. Not because their doctors don’t offer them but because they are out of reach financially, especially for patients experiencing medical debt. For other patients, receiving lifesaving treatments can cost them dearly, leading to major financial setbacks that affect their lives – and their families’ lives – for years.
Gwen Nichols
“New cancer therapies are helping people live longer, and as a result, they are staying engaged with the health care system longer and incurring more costs,” explained Gwen Nichols, MD, Chief Medical Officer, Blood Cancer United (formerly The Leukemia & Lymphoma Society). “Affording cancer care can be difficult, and close to half of cancer patients experience significant medical debt because of their care. In fact, more than 40 percent of people living with blood cancer use up their entire life savings within two years of diagnosis.”
Blood Cancer United believes that cancer care should not be a financial burden. Through advocacy work and a new patient program, the non-profit has implemented a one-of-a-kind solution that helps patients address the medical debt they have incurred and prevent them from accumulating future medical debt.
Tackling Medical Debt Initiative: Medical Case Management Program
Through its Tackling Medical Debt initiative, Blood Cancer United helps patients and caregivers in two ways – through a Medical Debt Case Management Program and through advocacy working for broader systemic change. The initiative has helped to resolve or prevent $8.2 million of debt for more than 3,900 patients. At the same time, the organization’s advocacy has contributed to the passage of more than 20 state laws protecting patients from the most punishing effects of medical debt.
Anne Gutch
“Blood Cancer United takes a holistic approach to addressing medical debt,” said Anne Gutch, Senior Vice President of Financial Assistance and Mission Strategic Partnering. “That is why we pair direct-to-patient insurance education and assistance programs, which help to get patients out of an immediate debt crisis, with policy solutions that help prevent medical debt in the first place.”
Blood Cancer United’s Medical Debt Case Management Program offers free, personalized, one-on-one assistance to help patients find ways to resolve their current and future debt. While the program does not directly forgive or pay off medical debt and cannot assist with debt that is in collections, it does help patients:
- Apply for financial assistance from hospitals and other sources, identify and address errors in medical bills, and negotiate payment plans with providers.
- Shop for and enroll in insurance plans that meet their unique needs as cancer patients and survivors, including Medicaid, Medicare, ACA Marketplace plans, and employer-sponsored health insurance
- Understand their insurance benefits and work with them to secure coverage when they’re facing barriers like coverage denials or the need for pre-approval.
“Health insurance should be a safety net that helps people afford their care, but in many cases, it is not,” said Gutch, who noted that most of the patients served by Blood Cancer United’s Case Management Program are insured. “The cost of premiums, deductibles, and out-of-pocket expenses adds up, leading to debt rooted in treatment. Ancillary costs for transportation to appointments and loss of income due to time off work add to the burden and lead to financial toxicity.”
Gutch added that in some cases, doctors and hospitals refuse to see patients until their medical debt with them is cleared, leaving patients shut out from accessing lifesaving treatment.
A KFF analysis found that, among adults experiencing medical debt, 46 percent did not go to a doctor’s appointment due to cost, 42 percent skipped a test or treatment, and 37 percent did not fill a prescription.
“The consequences are serious because cancer treatment is not intended to be skipped or taken at lower doses,” Dr. Nichols said. “It’s a recipe for relapse.”
Applying for the Case Management Program is easy and can be done over the phone (1-833-507-8036) or online. Once enrolled, patients work directly with professional case managers until their problem is resolved. For one patient, Luke, Blood Cancer United’s case managers worked through more than 30 engagements to get his insurance company to approve the lifesaving oral cancer drug prescribed by his doctor.
“Several times, my insurance company denied coverage for this medicine, which costs thousands of dollars each month,” he recounted. “I went from taking the pill twice a day to once a day. I finally found Blood Cancer United’s website, and it said it could help with insurance denials. It was exactly what I was looking for. Working with the case manager was such a positive outcome. We won the external review, and I have my treatment. I am forever grateful.”
In addition to one-on-one help available through its Case Management Program, Blood Cancer United offers tools, guides, and lists of free resources to help patients manage their finances before, during, and after treatment. They also offer information about employment rights to help patients protect themselves from employment discrimination. Information support specialists – trained and licensed oncology social workers and nurses – stand by ready to help patients understand their diagnosis and treatment options, manage side effects, and address emotional concerns.
Advocating for Systemic Policy Changes
Through its Office of Public Policy (OPP), Blood Cancer United works to ensure patients with pressing medical needs can navigate and afford cancer care under our nation’s laws. Working closely with dedicated volunteer advocates, they advocate for:
- Making sure insurance is affordable and high quality
- Increasing access to Medicaid
- Protecting patients from “junk insurance”
- Reducing out-of-pocket costs for prescription medicines
- Reining in the cost of cancer care
Working through a network of over 30,000 volunteer advocates, Blood Cancer United has helped pass 30 laws in 19 states protecting patients from medical debt. Some of those reforms include requiring hospitals to screen patients for financial assistance, capping interest rates on medical debt, prohibiting providers from pursuing to liens and pay garnishment to recover patients’ medical debts, and banning medical debt from credit reports.
In 2025 alone, Blood Cancer United’s volunteer advocates placed 68,000 phone calls and emails to lawmakers nationwide and participated in more than 150 meetings with members of Congress. Blood Cancer United is also a leader in the Partnership to Protect Coverage, a coalition of more than 40 national patient advocacy groups working to protect patients from Medicaid cuts.
As part of Keep Americans Covered – a coalition representing patients, consumers, doctors, hospitals, health insurers, and employers – Blood Cancer United advocates for patients who rely on tax credits that make health coverage affordable.
In 2025, Congress allowed those tax credits to expire and also enacted major cuts to Medicaid. Those two changes will result in an estimated 15 million or more people losing health insurance in the coming years.
“The American people just experienced legislation that will lead to the largest cut to our health care system in history,” Dr. Nichols concluded. “Virtually everyone will be touched by this at some point – maybe not immediately but eventually. That is why Blood Cancer United is so committed to keeping the topic of medical debt top-of-mind among the public and our public servants working at the state and federal levels, regardless of any partisan politics.”
Editor’s Note
Are you or someone you love living with blood cancer and having a hard time paying for treatments? You may be eligible to receive financial assistance from one of the HealthWell Foundation’s Oncology Funds.
