Ashley Walton was 25 when a mole on her back turned out to be melanoma. She had it removed, but three years later she discovered a lump in her abdomen. She was then unemployed and uninsured, and so she put off going to a doctor. She tried to buy health insurance. Every company rejected her.
By the time Walton finally sought medical help, the melanoma had spread to her brain, lungs and elsewhere. And she eventually became eligible for California’s Medicaid program, which had been expanded under the Affordable Care Act. Two major surgeries, radiation and immunotherapy did not cure the cancer — but did beat it back.
The 32-year-old Oakland resident credits her survival to the ACA. Without it, “I would likely be dead, and my family would likely be bankrupt from trying to save me,” she said. Her greatest concern is that Republican assaults on the law will imperil that coverage.
“For cancer survivors, we literally live and die by insurance,” Walton said.
As the battle over the law escalates, cancer patients and survivors are among the most vocal of groups raising alarms about the GOP’s repeal effort. They are calling congressional offices and showing up at their representatives’ town hall meetings with angst-filled stories about a pre-ACA world in which they couldn’t get individual health plans because of their medical histories.
Lawmakers seem to be hearing the message, especially on the issue of preexisting conditions, and they are reiterating promises to protect people with health problems in any replacement legislation. So far, though, Republicans have yet to identify a plan that would do that and still sustain insurers’ economic viability.
The fate of patient protections in the fight over the health-care law looms especially large for the cancer community because of the disease’s prevalence and the enormous cost of treatment. More than 15 million people in the United States are patients or survivors, with millions more affected as family members. And although new therapies offer much promise, the disease remains the second-leading cause of death in this country.
When The Washington Post recently asked readers how they may be affected by changes in health-care policy, a striking number said they or family members were fighting cancer and outlined an array of concerns.
“People are scared out of their minds,” said 34-year-old Erin Price Schabert, who seven years ago was treated for breast cancer. She frets whether that history would make her “uninsurable” in the individual market if she were to leave her job.
Indeed, many people described a kind of existential dread that matches their fear of cancer. Some worry that the law’s likely dismantling may put the latest oncology treatments, which can run $10,000 a month, out of reach. Others point to research showing that insurance status affects cancer patients’ survival. Still others are apprehensive about a possible end to the Medicaid expansion, which has covered millions of lower-income Americans in 31 states.
Even amid complaints about plans’ high premiums and deductibles, most people said they would rather see the imperfect law fixed than torn apart.
The issue affects Schabert professionally as well as personally. She works in Washington with young adults at a local cancer support organization, Smith Center for Healing and the Arts. Most are too old to stay on their parents’ insurance, and many are independent contractors and so aren’t covered by employer-based insurance.
“The ACA has been their lifeline,” she said.
The 2010 law included several protections for people with preexisting conditions such as cancer, asthma or diabetes. It required insurers to accept all applicants and prohibited them from setting premiums based on health status. It also barred them from setting limits on annual and lifetime benefits — a critical provision for cancer patients.
None of that was the case before the ACA, when insurers in the individual market routinely rejected sicker, more-expensive patients or charged them much more. “Many cancer patients were unable to get coverage . . . or could only get inadequate coverage,” J. Leonard Lichtenfeld, deputy chief medical officer of the American Cancer Society, told lawmakers at a recent House committee hearing. “Cancer patients need to know that they have insurance.”
This month, House Energy and Commerce Committee Chairman Greg Walden (R-Ore.) introduced legislation that would continue several patient protections included in the ACA. His bill would require health plans to accept all applicants and prohibit them from excluding benefits for preexisting conditions. It would also ban insurers from setting premiums based on people’s health status.
“The push to rebuild our health care system is all about patients, which is why we are making this commitment to protect patients living with preexisting conditions — it’s only fair,” Walden said in a statement.
Kirsten Sloan, senior director for policy analysis at the American Cancer Society Cancer Action Network, said it would be “a plus” if protections for people with preexisting conditions were maintained. But looking at the whole picture is crucial, she added.
“What we don’t know is what happens to the [premium] subsidies, to Medicaid, to all the other components,” she said.
House Republicans last week released a policy statement designed to show where they are headed on health care. It called for major changes in those federal subsidies, which have helped the vast majority of people with ACA policies afford their plans. The statement also talked up a drastic Medicaid overhaul and touted a “next generation” of state high-risk health insurance pools for people with big medical bills.
The latter idea sets Herbert Malamut of Southampton, N.J., on edge. He remembers the old insurance pools, which dozens of states used before the ACA as a fallback for people who couldn’t get coverage.
“Those pools were poorly funded and had high premiums and skimpy benefits,” said Malamut, 61, who was diagnosed with non-Hodgkin’s lymphoma in 2012. “I don’t know why we would go back to them.”
The GOP intends to eliminate the law’s mandate that most Americans be insured, but leaders have not detailed how they plan to motivate healthy people to sign up. Without a balance of healthy and sick enrollees, premiums can skyrocket and insurers opt out, putting the individual market at risk of collapse
One potential approach would require individuals to maintain health insurance or face some kind of financial penalty when they next seek coverage, although insurers still could be blocked from charging higher premiums based on health status. Some experts note the negatives of a continuous coverage requirement for people dealing with a disease such as cancer. Individuals may have gaps in coverage because they are too sick to work or have unexpected expenses, or lose insurance because of a divorce or spouse’s death.
“Some people will fall through the cracks,” said Larry Levitt, senior vice president at the Kaiser Family Foundation.
The swirl of Republican ideas is only stoking the cancer community’s anxiety.
Elizabeth Alcorn, 56, and her husband have a small-group policy through her dental practice in Charlottesville. Because she has severe arthritis, she wants to retire early but is worried about coverage in a post-ACA world. “How are we going to manage this?” she said. “We are too young for Medicare.”
Her husband, who is 60, shares her concerns. He’s dealing with prostate cancer that just recurred after several years. “I have had good security with [the ACA],” Gerry Corridon said, “and now we don’t know how this is going to end up.”
In Thousand Oaks, Calif., the law’s bleak future is weighing heavily on 61-year-old Maryann Hammers, too. Diagnosed with ovarian cancer three years ago, the freelance writer underwent surgery and chemotherapy and often couldn’t work. The disease recurred seven months later, and now blood tests suggest that it’s back yet again.
“I know what’s coming next,” she said. “And it’s a friggin’ nightmare.”
There’s one thing she hasn’t had to worry about: paying for her treatment. Since January 2014, Hammers has been covered by an ACA health plan. She’s “completely panicked” about the Republicans’ plan to repeal the law and what that could do to her coverage next year.
“Without coverage, I don’t get care, and without care, I die,” she said. “So, to me, the people trying do away with the ACA are the ultimate death panel.”