NEW YORK, NY, Oct. 17, 2018 – Americans who become seriously ill don’t just struggle with their disease. Often, they feel confused and helpless (62%), face the risk of financial ruin (53%), and experience serious problems with their care (61%). Those are among the key findings of a new survey released today by the Commonwealth Fund, the Harvard T.H. Chan School of Public Health, and the New York Times.

The survey is unique in that it focuses on a large nationally representative sample of people with serious illness in the United States and explores how the health care system is working for them. Most of the people interviewed had such serious illnesses as heart disease, cancer, diabetes, or stroke, and were hospitalized multiple times. The survey asks respondents, all of whom either have a serious illness or are caring for a sick friend or family member, to answer questions about their hospital stays, their interactions with health professionals involved in their care, their dealings with health insurance companies, and their experiences paying for their care.

“The goal of this survey partnership is to open a window into what it’s like for our sickest family members, friends, and neighbors,” said Commonwealth Fund President David Blumenthal, M.D. “In my years as a practicing physician, I walked into many a patient’s room to find that, on top of managing their illness, they were overwhelmed by administrative red tape, worried about their health insurance, and fearful of what their treatment would cost. The Commonwealth Fund’s mission is to assure that everyone has affordable, high-quality health care, and too often our system fails those who need that care most.”

According to the initial survey findings, also published in today’s New York Times, financial concerns are among the biggest challenges the very sick confront. Even people with health insurance often face financial ruin if they became seriously ill:

  • Fifty-six percent of very sick people said they have had difficulty paying one or more of their health care bills, and 27 percent said their illness was a major financial strain on their family.
  • Among very sick people with health insurance, 31 percent have trouble paying hospital bills and 27 percent have trouble affording their medicine.
  • Thirty-seven percent of very sick people used up most or all their savings, and 23 percent couldn’t pay for necessities such as food, heat, or housing.

The health care system and its complexities are also a substantial source of stress. About six in 10 very ill people reported a problem with their care, such as a duplicate test or conflicting recommendations from providers. Nearly one in four experienced a medical error during their treatment. And 31 percent had difficulty understanding what their insurance covered.

“What is not recognized is that many insured seriously ill people have health insurance that does not protect them from large uncovered medical bills,” said Robert J. Blendon, Sc.D., Richard L. Menschel Professor of Health Policy and Political Analysis at Harvard T.H. Chan School of Public Health, and co-director of the survey.

In an overview report, the Commonwealth Fund’s Eric Schneider, M.D., Melinda Abrams, and colleagues discuss key findings from the survey and lessons for the U.S. health care system. Serious illness affects more than just physical health, they say: three of four (73%) very sick people reported one or more disruptions to their lives, including being unable to do their job. Nearly half (48%) reported emotional or psychological problems.

When it comes to helping people cope with all the aspects of illness, American health care often falls far short, the authors point out. Schneider and Abrams lay out three recommendations for making the system work better: prioritize patients’ and caregivers’ behavioral health and social service needs; make it easier for patients and caregivers to talk to their providers; and make health care more affordable.

“We need a health care system that is there for you when you get sick and that helps you and your family through what is likely one of the worst times in your life,” Schneider said. “That means knowing what patients need, designing a health care system that gives that to them, and assuring folks can afford it.”