When Pam Leonard felt a lump in her breast last November, she hesitated, debating whether to get testing to see if she had cancer.
She thought of her insurance policy, which carries a deductible of $2,600. She knew she would also have to spend as much as $5,700 on medical bills that would not be covered by an individual policy she bought under the Affordable Care Act. “I went back and forth for a couple of weeks,” Ms. Leonard recalled.
“I had to do something,” she said. “It didn’t go away.”
She eventually got a mammogram and ultrasound, confirming a cancer diagnosis. That led to a lumpectomy and weeks of chemotherapy. Ms. Leonard, 58, a teacher in Kenosha, Wis., will soon begin radiation treatment.
High-deductible plans have become commonplace, a deterrent used by companies to lower health care costs by discouraging unnecessary tests or treatments. Evidence for that link has mounted since the Great Recession 10 years ago, when deductibles began to soar: People increasingly deferred medical care, putting off elective surgeries and doctors’ visits. National health care spending slowed as a result.
But a recent study of women with insurance plans that carried deductibles of at least $1,000 underscores the danger to consumers required to shoulder a greater share of those costs.
Women who had just learned they had breast cancer were more likely to delay getting care if their deductibles were high, the study showed. A review of several years of medical claims exposed a pattern: Women confronting such immediate expenses put off getting diagnostic imaging and biopsies, postponing treatment.
And they delayed beginning chemotherapy by an average of seven months, said Dr. J. Frank Wharam, a Harvard researcher and one of the authors of the study, published earlier this year in the Journal of Clinical Oncology.
“Slight delays added up to long delays,” Dr. Wharam said.
While the study did not look at how the women fared after treatment, cancer doctors warn that even short gaps between diagnosis and treatment can affect the outcome. Survival rates are higher for patients with some cancers if they are treated early.
“What we see here is an unintended consequence of sharing costs,” said Dr. Ethan Basch, the director of cancer outcomes research at UNC Lineberger Comprehensive Cancer Center, who was not involved in the study.
As an oncologist, Dr. Basch said he frequently sees patients making decisions based on financial considerations. If they face high out-of-pocket costs, “they’re of a mind-set to avoid visits, expensive treatments,” he said. “They have a fear.”
At Susan G. Komen, a breast cancer charity, more than half of the questions to the group’s helpline are about financial assistance, said Susan Brown, senior director of education and patient support. The organization and its affiliates provide modest grants, including one to Ms. Leonard to help pay for a test not covered by her insurance, and refer patients to other resources for aid.
“They have people all the time talking about stopping their treatment or delaying treatment,” even when an individual has had an abnormal screening and needs a work-up for a final diagnosis, Ms. Brown said.
When Ms. Leonard tried to talk with the hospital where she was getting treatment about her medical bills, she found the staff largely unsympathetic. “Because I had insurance, I was told I didn’t need a financial advocate,” she said. Instead, she relied on her contacts at Susan G. Komen and extensive research to find other sources of help.
About half of all covered workers in the United States are now enrolled in plans with a deductible of at least $1,000, and many must pay several thousand dollars in medical bills before their plans even start to cover their care. About 11 percent of covered workers have a deductible of at least $3,000, according to a survey of employer benefits by the Kaiser Family Foundation. Employers are increasingly offering these plans — and more frequently giving their workers no other option.
While high-deductible plans are meant to encourage people to think twice about whether a test or treatment is necessary and if it can be done at a lower price, “it’s also frankly to impede their use of these services,” said Dr. Peter Bach, the director of the Center for Health Policy and Outcomes at Memorial Sloan Kettering Cancer Center.
The plans are succeeding in reducing the use of care. “The question is, at what cost?” Dr. Bach said.
High-deductible plans pose a problem, say researchers who have studied them, because patients do not always distinguish between the care they should get and what they can do without.
Nir Menachemi, a health policy professor at Indiana University who recently published an analysis of high-deductible plans in Health Affairs, said numerous studies show people are more likely to forgo preventive care when they have a high deductible — even if that care is free. High-deductible plans also depress the number of doctor’s office visits, according to several studies.
The study of breast cancer patients is the among first to look at the behavior of people suddenly facing a life-threatening disease, where the recommended treatment tends to be straightforward and not overly subjective, Dr. Wharam said.
Unlike people with chronic illnesses, these women did not expect to have significant expenses and may not be as prepared to navigate the systems. “Diabetes patients are used to getting bills in the mail,” he said.
Some employers try to help by funding special savings accounts, but many people don’t have the income to set aside money. “For most Americans, the lack of savings combined with higher deductibles makes it really difficult,” said Stacie Dusetzina, an associate professor of both health policy and cancer research at Vanderbilt University Medical Center.
The plans make care least accessible to those with the least amount of savings and income, Dr. Bach said: “We treat health care as a luxury good.”
At the Samfund, a charity that provides financial assistance to young people with cancer, “we see a lot of people who aren’t getting the care they need,” said Samantha Eisentein Watson, the organization’s founder and chief executive.
Many approach the charity only when they’re close to being evicted from an apartment or awash in medical bills. “The cost has wreaked such havoc on their life,” she said.
Two years ago, when Rochelle Ness was 37, with three children under 6 years old, she learned she had breast cancer. The policy she had through her husband’s job had a deductible of $2,250 and required she pay a total of $11,500 toward her yearly medical bills.
She did not know how she would come up with the money, but having lost two family members to breast cancer, she did not consider delaying treatment. “That was scarier to me,” she said.
Now saddled with medical debt, Ms. Ness is also fighting to get her insurer to pay for the six Neulasta injections needed to help prevent infections during chemotherapy.
Her husband’s employer did not offer a savings account to accompany the high-deductible plan, and they still owe about $25,000. “We have maxed out our credit cards trying to pay medical expenses,” she said.
Ms. Ness, who received financial assistance from the Samfund, said she is now trying to come up with the money for additional treatments, including physical therapy and a hearing aid for the hearing loss resulting from chemotherapy.
Living paycheck to paycheck, the family is struggling to find any extra money to pay for their children to go camping or join a sports team.
“We were able to manage our medical bills back then,” she said. “It’s nearly impossible right now.”