By Sandy Ahn and JoAnn Volk

In the midst of Senate action to repeal and potentially replace the Affordable Care Act (ACA), a new report by the American Cancer Society Cancer Action Network (ACS CAN), authored by CHIR experts JoAnn Volk and Sandy Ahn, finds just how important the ACA has been for cancer patients and their families. The report illustrates the gains that may be lost if the ACA is repealed or weakened. Navigating the Coverage Experience and Financial Challenges for Cancer Patients is based on more than a dozen interviews with hospital-based Financial Navigators, who work closely with cancer patients throughout their treatment and provide critical insight into the coverage experience of cancer patients. The report finds:

• The ACA greatly improved opportunities to access coverage for cancer patients; however, obtaining affordable coverage is still difficult for patients living in states that did not expand Medicaid and don’t qualify for financial assistance with marketplace coverage.
• The ACA’s minimum standard for comprehensive coverage and important financial protections like the annual limit on out-of-pocket costs help ensure cancer patients receive treatment and protect them from catastrophic financial costs.
• Out-of-pocket costs are still a financial struggle for cancer patients when using their coverage since most patients accrue substantial expenses (deductibles, co-payments, and coinsurance) quickly and over multiple years. Also, cancer patients and their families often have reduced household income because of a cancer diagnosis. At the same time, they must still meet other financial obligations like a mortgage and car payments that make paying for out-of-pocket costs much more difficult.
• While most cancer treatment is now covered, insurers are increasingly requiring patients to get prior authorization for treatment or try a less expensive medication before accessing more costly drugs.
• Financial Navigators report that while patients eventually receive approval to obtain treatment, these medical management procedures require the expertise and help of Financial Navigators and hospital staff, and can delay treatment or result in less-than-optimal treatment.

Researchers conducted interviews in January and February, just as Congress was beginning debate on repealing the ACA. Since then, congressional leaders in both the House and Senate have unveiled proposals that would undercut the gains identified in this paper. Although congressional efforts to repeal and to replace the ACA have thus far failed, most of the proposals debated to date would undermine or outright repeal protections for those with pre-existing conditions. Some congressional leaders have pledged to continue to propose legislation that would repeal and replace the ACA, although it’s unclear what those proposals would look like and how they would change the important protections established under the law.

As the report notes, if the ACA is repealed, the 15 million people and their families living with cancer along with the expected 1.7 million that will be newly diagnosed with the disease will have very different experiences from those identified in the report. Most significantly, without the lifeline that coverage offers, patients would have difficulty getting treatment at all. The report is an important reminder of just what’s at stake for cancer patients and their families if Congress and the President are successful in their promise to repeal the ACA.