USA Today/Kaiser/Harvard survey highlights problems in the health care system through the experiences of people with cancer…Survey of families affected by cancer shows people with and without health Iinsurance often suffer serious financial hardships

A major national survey of people affected by cancer provides an in-depth examination of how families cope with cancer and highlights problems of health insurance and health care costs through the lens of those who have experienced this major illness. The results show how health care and health insurance systems can fail to protect people when they are most in need.

Conducted jointly by USA Today, the Kaiser Family Foundation, and the Harvard School of Public Health, the survey shows the disease’s devastating impact often extends beyond an individual patient to affect entire families – sometimes causing financial crises, strained relationships, and physical and mental health issues for those who love and care for people diagnosed with cancer.

The survey found that one in four families affected by cancer say the experience led the person with the disease to use up all or most of their savings, and one in eight say they borrowed money from relatives. The illness also made it harder for some to find and keep health insurance – with about one in 10 saying they couldn’t buy health insurance because they had been diagnosed with cancer, and 6% saying they lost their coverage as a result of the disease.

Having health insurance at all times during treatment helped to limit the financial consequences of a cancer diagnosis, but even those with consistent coverage faced difficulties – one in five used up all or most of their savings, one in 10 borrowed money from relatives and 9% were contacted by a collection agency.

Among those who did not have health insurance consistently during their illness, the financial burden was even greater. More than one in four said that they delayed or decided not to get treatment because of its cost – five times the rate reported by those who had health insurance consistently. Nearly half used all or most of their savings; four in 10 were unable to pay for basic necessities; one in three sought the aid of a charity or public assistance program; and 6% filed for personal bankruptcy.

“This is one of the most disturbing of the hundreds of surveys we have done,” said Kaiser Family Foundation President and CEO Drew E. Altman, Ph.D. “When people with cancer are deferring care and experiencing such serious financial hardships because of inadequate insurance or because they have no health insurance, it casts a new light on the need to address our nation’s health insurance problems.”

While most report that employers treated them well after the diagnosis of cancer, 44% say that the family member diagnosed with cancer suffered problems at work related to their disease. This includes one in three who say the disease limited their ability to do their job, one in five who say it affected how others perceived their performance, one in 10 who had to change jobs, and one in 10 who were removed from a job because of their illness. Problems were most common among workers who earned less than $40,000, but also affected higher earners.

The survey also finds that half of families say that they experienced at least one problem related to coordination of care during the course of cancer treatment. This includes one in four who report that they received conflicting information from different doctors or other professionals involved in their care, one in five who received duplicate tests or diagnostic procedures, and one in five who were confused by the medications their doctors prescribed. Other issues include leaving a doctor’s office without getting important questions about their care answered (15%) and medical records not reaching a doctor’s office in time for an appointment (13%).

“Clearly a top priority for improving cancer care in this country is fixing this problem,” said Robert J. Blendon, Professor of Health Policy and Political Analysis at the Harvard School of Public Health and the John F. Kennedy School of Government.

Among survivors, most report some positive impacts as a result of the cancer, and many say the experience changed their outlook on life in a positive direction. Still, many report stress and strain, including health problems for family members other than the person with cancer.

The National Survey of Households Affected by Cancer is a nationally representative survey of 930 adults ages 18 years and older who say they, or another family member in their household, have been diagnosed with or treated for cancer in the past five years (excluding non-melanoma skin cancer). The survey was conducted by telephone between Aug. 1 and Sept. 14, 2006, and has a margin of sampling error of 3.6 percent.

USA Today is featuring the survey results in a series of articles beginning today. A link to those articles, as well as the full survey results and charts with key data, are available online.

The USA Today/Kaiser Family Foundation/Harvard School of Public Health Survey Project is a three-way partnership. USA Today, Kaiser, and Harvard jointly design and analyze surveys examining health care issues, with USA Today retaining editorial control over the content published by the paper.