Financial Burden of Cancer: A Patient’s Guide to Getting Help

Get Informed: Understanding who pays for what in cancer clinical trials

The financial burden of cancer can be overwhelming for patients. It’s difficult enough to manage our medical decisions, let alone navigate the insurance paperwork.

Here at Patients Rising, we’re committed to helping patients find ways to ease the financial burden of cancer. That’s why we’re sharing tips, suggestions and ideas to help lighten the burden. We’re also educating patients about the underlying factors contributing to the financial burden of cancer.

Insurance companies make it hard to understand their coverage and payment policies. But, what about clinical trials? Who pays the bill? has a helpful primer that explains who pays the financial burden of cancer clinical trials. Traditionally, costs are broken down into two categories: patient care costs and research costs.

Patient care costs are those costs related to treating your cancer, whether you are in a trial or receiving standard therapy. These costs are often covered by health insurance. They include:

  • Doctor visits
  • Hospital stays
  • Standard cancer treatments
  • Treatments to reduce or eliminate symptoms of cancer or side effects from treatment
  • Lab tests
  • X-rays and other imaging tests

Research costs are those related to taking part in the trial. Often these costs are not covered by health insurance, but they may be covered by the trial’s sponsor. Examples include:

  • The study drug
  • Lab tests performed purely for research purposes
  • Additional x-rays and imaging tests performed solely for the trial

Where can patients find assistance for dealing with the financial burden of cancer?

Where should patients and their families turn for financial assistance?

The National Cancer Institute maintains a searchable resource database that includes government agencies and national organizations that provide financial assistance to cancer patients and their families. There’s also helpful information about patient assistance programs that are helping patients gain access to life-saving care.

“In addition to searching this database, be sure to ask your doctor or health care team for suggestions of local or national organizations that support people with cancer,” the National Cancer Institute advises patients on their website. “Local hospitals, health departments, and social service agencies are most familiar with services available near you – ask to speak with a social worker.”

Other organizations, such as Lucy’s Love Bus and, have assembled helpful lists of resources for patients.

And don’t forget to visit The Samfund’s helpful resource guide.

Video of the Day: Innovation reduces the financial burden of cancer

Ultimately, innovation helps reduce the financial burden of cancer.

As new treatments are developed, it brings down the costs, making it more affordable. That’s the conclusion of health economists.

“A couple of years ago, we realized that our cost assessments didn’t really reflect all of these changes in incidence, and survival and treatment,” says Robin Yabroff, Ph.D., formerly with the National Cancer Institute, “so we worked together with a bunch of colleagues– statisticians, epidemiologists, and economists to develop new methods, and also to use the most recent data to try and estimate– come up with better estimates of the cost of cancer care in the U.S.”


Financial Toxicity: Insurance policies undermine cancer treatment

Insurance policies are contributing to the financial burden of cancer.

“Commercial insurers in the United States have increasingly shifted medical care costs to patients through higher premiums, deductibles, and coinsurance and copayment rates,” the National Cancer Institute concludes in its analysis of Financial Toxicity and Cancer Treatment. “The 2014 Commonwealth Fund Biennial Health Insurance Survey indicated that 23% of insured adults aged 19 to 64 years experienced out-of-pocket costs equal to 10% or more of household income.” 

The National Cancer Institute explicitly names oral cancer treatments as an area where policies are contributing to the financial burden of cancer. Some insurance companies exploit loopholes by charging patients more to receive a treatment in pill form.

“Oral cancer drug–based treatments are frequently covered under patient pharmacy benefits’ specialty tier, requiring high coinsurance that patients pay out of pocket,” the National Cancer Institute reports. “These trends in treatment cost and changes in insurance coverage suggest that financial distress associated with acute and chronic cancer is highly prevalent, even among persons with health insurance.”

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