First, the good news: Due to advances in cancer screening and treatment, the number of cancer survivors is increasing. The United States had nearly 17 million cancer survivors in 2019, and that population is expected to surge to 26 million by 2040.

Next, the challenge: About a third of these survivors are working-age adults between 20 and 64. The term cancer survivor encompasses people from the point of diagnosis until death. These survivors are susceptible to side effects—whether due to cancer or its treatments—that may impede their ability to work, including chronic fatigue, cognitive impairments and neuropathy. Yet the Social Security Administration (SSA) most readily issues Social Security Disability Insurance (SSDI) payments to cancer survivors who have a cancer type that comes with a high likelihood of death.

The rising number of cancer survivors raises a question: How should disability benefits be assessed for those who survive cancer but who lose their ability to work? The SSA commissioned the National Academies of Sciences, Engineering, and Medicine to write a report about changes in the diagnosis, treatment and prognosis of select cancers, hoping to use that information to reassess their criteria. The committee presented its report to SSA on Feb. 9, 2021.

“While we did this report for SSA, it’s really a road map for any organization that’s looking at disability [benefits],” says Patricia Ganz, an author of the report and a medical oncologist at the Schools of Medicine and Public Health at the University of California, Los Angeles. SSDI offers financial support to Americans under retirement age who cannot work due to disability, as long as they meet medical requirements and have worked long enough and recently enough to meet SSA eligibility criteria.

When assessing cancer-related disability benefits, SSA disproportionately awards benefits to people with cancers with low survival rates. Between 2015 and 2019, only 4.7% of disability claims were denied to survivors of lung cancer, which has a relatively low survival rate. Meanwhile, more than 40% of disability claims were denied to survivors of breast cancer and lymphoma, which have much higher survival rates and are also among the most common cancers in young adults. The SSA automatically awards benefits to people with some impairments regardless of education, age or employment history. But when it comes to cancer, likelihood of death largely determines what makes this list of impairments. People with impairments that are not on the list undergo extra scrutiny to determine their ability to work.

Some side effects, such as neuropathy, can persist for months or years after cancer treatments end. Other side effects, such as cardiotoxicity and cognitive impairments, can begin at the time of treatment or years later. Some impairments may persist into remission. For example, Ganz cites imatinib, a targeted therapy that can lead to remission in people with some forms of leukemia. Patients often take it continually for years, even after no evidence of disease remains. About 10% to 15% of patients who take the medication have chronic fatigue that can make it difficult to work.

“In many cases, people are treated pretty aggressively and are expected to return to work,” Ganz says. “Most people do want to go back to work … but some people are just not able to. It may be due to something like having had an amputation, or it may be more subtle things, such as persistent serious fatigue or cognitive difficulties. What we tried to show is that we’ve got people who have no evidence of disease who still have substantial impairments.”

Before a cancer survivor submits a claim for disability benefits, they should talk to their health care team, says attorney Joanna Morales, who is CEO of Triage Cancer. Triage Cancer is a national nonprofit that offers free educational tools​ to help survivors navigate disability benefits, as well as other practical and legal matters related to a cancer diagnosis. Morales says that the medical record is the best tool a survivor has to get benefits, and it needs to include documentation of all symptoms that may be relevant to the ability to work.

“People tend to underreport symptoms to their health care team,” she says. “Often, for patients it’s the cumulative effect of all of their symptoms that sends people over the edge of not being able to work anymore. Don’t just document the impact [of side effects] on the individual, but their ability to work, too. How is your medical condition keeping you from keeping a job?”

About 65% of all initial SSDI claims are denied, but they can be appealed before an administrative law judge. Morales says that it’s not necessary to hire an attorney to appeal, but one can be helpful during an SSDI appeals hearing.

“Attorneys work with those judges and those vocational experts every day. Hiring someone who understands that process and can help facilitate the process can only be beneficial,” Morales says. “But it’s absolutely not required. Someone could walk into that hearing without any representation and talk about their medical conditions to the judge.”

Hiring an attorney for SSDI appeals may be more financially feasible than many people think, Morales says. For SSDI appeals hearings, payments to attorneys are capped by statute: SSDI attorneys can only get paid up to 25% of back payments owed to the survivor, and attorney fees are capped at $6,000. (Although there are limited exceptions to this limitation, Morales says it should be a red flag if an attorney charges more than that.)

“Don’t be overwhelmed by the system, and don’t take no for an answer,” Morales says.​

Jen Tota McGivney is a writer in Charlotte, North Carolina.