Many Cancer Patients Face Crippling Costs

CHICAGO – The financial costs of cancer weigh heavily on patients.

Personal bankruptcy is especially a risk for young adult cancer patients with local-stage tumors. Cancer diagnosis patterns indicate patients are likely to delay screening and treatment for less symptomatic cancers during times of recession. Many insured cancer patients report feeling the financial pinch of their out-of-pocket costs, going into debt or forgoing therapies and, in general, becoming less satisfied with their cancer care.

Those were the conclusions from three studies that examined financial implications of a cancer diagnosis and were presented at the annual meeting of the American Society of Clinical Oncology.

Bankruptcies Hit Lung Patients Hardest

First-time bankruptcy filings averaged 0.5% of patients at 1 year after diagnosis and 1.9% at 5 years after diagnosis based on data from 1995-2009, Dr. Scott David Ramsey reported. Average U.S. bankruptcy rates for the entire population are 0.28%.

Based on trend data, the U.S. financial crisis has likely further driven up bankruptcy filings by cancer patients, he added.

Unlike previous studies of personal bankruptcy in cancer patients, which have relied on self-reported data, Dr. Ramsey of the Fred Hutchinson Cancer Research Center, Seattle, and his colleagues looked at actual bankruptcy filings. They married Surveillance, Epidemiology, and End Results (SEER) registry data with federal bankruptcy court records in Western Washington State from 1995-2009.

Bankruptcy filings were compared by cancer type and by bankruptcy type. Time-dependent covariants were used, since filing patterns and types varied after passage of the Bankruptcy Abuse Prevention and Consumer Protection Act (BAPCPA) in 2005. They had no other financial information about patients’ treatment or debt status before their cancer diagnosis.

The researchers found 4,723 SEER registry patients who had filed for bankruptcy and compared them with the other 225,884 cancer patients who did not file for bankruptcy. The five most common cancers associated with bankruptcy filings were lung, thyroid, leukemia/lymphoma, uterine, and colorectal. Those who filed were more likely to be nonwhite, women, younger, and to have local or regional cancers.

The bankruptcy rates were highest for lung cancer patients; the rate was 8% among patients who were still alive 5 years after diagnosis.

Thyroid was the second most likely cancer to be associated with bankruptcy. "We were puzzled by this finding ... but noted that most of these are local stage cancers and likelier to occur in younger women with fewer assets." While the treatment is usually straightforward, the costs can still be considerable, he said. A course of radioactive iodine treatment costs around $40,000.

Dr. Ramsey’s study was funded by the National Cancer Institute.

Breast Cancers Untreated in Recessions

During recessions, the incidence and treatment rates for breast cancer decline, but they don’t vary much for pancreatic cancer, reported Dr. Ronald D. Ennis, director of radiation oncology at St. Luke’s and Roosevelt Hospitals in New York.

For every 1% increase in unemployment, there was a 3% decline in cancer incidence, a 9% drop in radiotherapy, and a 12% decline in surgery. For breast cancer, however, the differences were much greater at 7%, 17%, and 24%, respectively. For pancreatic cancer, the relationship was less evident with no significant difference in incidence, less than 2% decline in radiotherapy, and 9% in surgery.

Delayed screening and care are the probable causes of the inverse relationship between breast cancer and recession, said Dr. Ennis of St. Luke’s–Roosevelt Hospital, Continuum Cancer Centers of New York.

Breast cancer symptoms are less evident and incidence can appear to decline as a result of diagnostic delays from declines in screening. In pancreatic cancer, the symptoms are obvious and hard to ignore, he explained. "People likely put off preventive screening in times of recession, increasing the probability that cancers will be detected later and at more advanced stages ... It’s a case of fewer people getting diagnosed and fewer people getting treated."

The findings were noted in a study that compared data from the SEER database with unemployment rates by month from the Bureau of Labor Statistics from 1983-2007. Education, income, and race were considered in the analysis.

Dr. Ennis had no relevant financial disclosures.

Chemo Costs Pinch Insured Patients

"I have had to go without groceries in the house just to get my medicine."

"My parents pay my medical bills, which is humiliating when I worked 27 years as a teacher."

"I became homeless and our entire family has had to live with a friend several times."

These were just a few of the comments taken from surveys of 216 chemotherapy patients, reported by Dr. S. Yousuf Zafar of Duke University Medical Center, Durham, N.C.

Sponsored by the HealthWell Foundation, the study found considerable financial burdens related to chemotherapy. Although 90% of the survey participants had health insurance, most were underinsured with a mean monthly out-of-pocket expense of $712 (median $459). Most said this represented a financial burden that they described as moderate (39%), significant (30%) or catastrophic (11%).

As a result, 70% reduced leisure activities, 48% turned to their savings, and 18% sold possessions. Because of the cost of their drugs, 26% didn’t fill prescriptions.

Among their coping mechanisms for dealing with drug costs, patients asked for samples, requested cheaper drugs, sought out drugs from another country via the Internet, and shopped for lower prescription prices. To pay for their drugs, 43% borrowed money or used credit. When their cancer symptoms brought them to the hospital, many asked their doctors to let them stay for the night in the hopes of ensuring that their insurance would cover the hospital care.

These patients were less happy with their care and reported a reduced quality and standard of living. Most said they had talked to their doctor about costs, but perhaps too late in the course of their care, Dr. Zafar said.

The findings were seen among respondents who kept diaries and completed a monthly survey for 4 months. Most were white women: 76% had breast cancer. The survey was national, but 23% of the respondents resided in North Carolina. Over half were retired, 33% were college educated, and 65% earned less than $20,000 per year.

Dr. Zafar acknowledged that the findings are limited by the size of study, that all participants were on chemotherapy, and that most participants were breast cancer patients. Also, disease outcomes were not assessed.

Talk to Patients About Costs

According to Dr. Neal J. Meropol, who was the discussant of the papers at the ASCO meeting, these studies drill down from the macroeconomic to the individual cancer patients feeling the burdens of increased insurance costs and more cost sharing for their treatment. Cancer diagnosis is associated with the greatest individual burden for health care costs, with more than 13% of patients spending more than 20% of their income. Additionally, the Kaiser Family Foundation reports 20% of cancer patients use all of their savings on their cancer care.

More 50 million Americans are uninsured, and ample data show that lack of insurance is associated with late diagnosis of cancer. Additionally, every 1% increase in unemployment results in another 1 million citizens losing health insurance, said Dr. Meropol, chief of hematology-oncology, University Hospitals Case Medical Center, Case Western Reserve University, Cleveland. As the numbers of uninsured and underinsured increase, the divide grows between the haves and the have-nots in our society. The disparities will result in more delays in seeking care, decreased access to treatment, and more financial burdens including more personal bankruptcies.

Trends in health care spending threaten our nation’s health. In 2010, the NIH estimates that we spent $264 billion on cancer, $103 billion of that on direct medical costs. We need more patient-physician discussions about the costs of care, as well as educational and support tools to promote effective communication about costs and to guide patients’ evaluations of treatments and their impact on outcomes. We need a better understanding of the factors that drive the costs of cancer care and how the cancer care system can be modified to ensure that all Americans have access to high-quality, cost-effective care.

Dr. Meropol is an advisor or consultant to AstraZeneca, Genentech, Genomic Health, and Helsinn.

CHICAGO – The financial costs of cancer weigh heavily on patients.

Personal bankruptcy is especially a risk for young adult cancer patients with local-stage tumors. Cancer diagnosis patterns indicate patients are likely to delay screening and treatment for less symptomatic cancers during times of recession. Many insured cancer patients report feeling the financial pinch of their out-of-pocket costs, going into debt or forgoing therapies and, in general, becoming less satisfied with their cancer care.

Those were the conclusions from three studies that examined financial implications of a cancer diagnosis and were presented at the annual meeting of the American Society of Clinical Oncology.

Bankruptcies Hit Lung Patients Hardest

First-time bankruptcy filings averaged 0.5% of patients at 1 year after diagnosis and 1.9% at 5 years after diagnosis based on data from 1995-2009, Dr. Scott David Ramsey reported. Average U.S. bankruptcy rates for the entire population are 0.28%.

Based on trend data, the U.S. financial crisis has likely further driven up bankruptcy filings by cancer patients, he added.

Unlike previous studies of personal bankruptcy in cancer patients, which have relied on self-reported data, Dr. Ramsey of the Fred Hutchinson Cancer Research Center, Seattle, and his colleagues looked at actual bankruptcy filings. They married Surveillance, Epidemiology, and End Results (SEER) registry data with federal bankruptcy court records in Western Washington State from 1995-2009.

Bankruptcy filings were compared by cancer type and by bankruptcy type. Time-dependent covariants were used, since filing patterns and types varied after passage of the Bankruptcy Abuse Prevention and Consumer Protection Act (BAPCPA) in 2005. They had no other financial information about patients’ treatment or debt status before their cancer diagnosis.

The researchers found 4,723 SEER registry patients who had filed for bankruptcy and compared them with the other 225,884 cancer patients who did not file for bankruptcy. The five most common cancers associated with bankruptcy filings were lung, thyroid, leukemia/lymphoma, uterine, and colorectal. Those who filed were more likely to be nonwhite, women, younger, and to have local or regional cancers.

The bankruptcy rates were highest for lung cancer patients; the rate was 8% among patients who were still alive 5 years after diagnosis.

Thyroid was the second most likely cancer to be associated with bankruptcy. "We were puzzled by this finding ... but noted that most of these are local stage cancers and likelier to occur in younger women with fewer assets." While the treatment is usually straightforward, the costs can still be considerable, he said. A course of radioactive iodine treatment costs around $40,000.

Dr. Ramsey’s study was funded by the National Cancer Institute.

Breast Cancers Untreated in Recessions

During recessions, the incidence and treatment rates for breast cancer decline, but they don’t vary much for pancreatic cancer, reported Dr. Ronald D. Ennis, director of radiation oncology at St. Luke’s and Roosevelt Hospitals in New York.

For every 1% increase in unemployment, there was a 3% decline in cancer incidence, a 9% drop in radiotherapy, and a 12% decline in surgery. For breast cancer, however, the differences were much greater at 7%, 17%, and 24%, respectively. For pancreatic cancer, the relationship was less evident with no significant difference in incidence, less than 2% decline in radiotherapy, and 9% in surgery.

Delayed screening and care are the probable causes of the inverse relationship between breast cancer and recession, said Dr. Ennis of St. Luke’s–Roosevelt Hospital, Continuum Cancer Centers of New York.

Breast cancer symptoms are less evident and incidence can appear to decline as a result of diagnostic delays from declines in screening. In pancreatic cancer, the symptoms are obvious and hard to ignore, he explained. "People likely put off preventive screening in times of recession, increasing the probability that cancers will be detected later and at more advanced stages ... It’s a case of fewer people getting diagnosed and fewer people getting treated."

The findings were noted in a study that compared data from the SEER database with unemployment rates by month from the Bureau of Labor Statistics from 1983-2007. Education, income, and race were considered in the analysis.

Dr. Ennis had no relevant financial disclosures.

Chemo Costs Pinch Insured Patients

"I have had to go without groceries in the house just to get my medicine."

"My parents pay my medical bills, which is humiliating when I worked 27 years as a teacher."

"I became homeless and our entire family has had to live with a friend several times."

These were just a few of the comments taken from surveys of 216 chemotherapy patients, reported by Dr. S. Yousuf Zafar of Duke University Medical Center, Durham, N.C.

Sponsored by the HealthWell Foundation, the study found considerable financial burdens related to chemotherapy. Although 90% of the survey participants had health insurance, most were underinsured with a mean monthly out-of-pocket expense of $712 (median $459). Most said this represented a financial burden that they described as moderate (39%), significant (30%) or catastrophic (11%).

As a result, 70% reduced leisure activities, 48% turned to their savings, and 18% sold possessions. Because of the cost of their drugs, 26% didn’t fill prescriptions.

Among their coping mechanisms for dealing with drug costs, patients asked for samples, requested cheaper drugs, sought out drugs from another country via the Internet, and shopped for lower prescription prices. To pay for their drugs, 43% borrowed money or used credit. When their cancer symptoms brought them to the hospital, many asked their doctors to let them stay for the night in the hopes of ensuring that their insurance would cover the hospital care.

These patients were less happy with their care and reported a reduced quality and standard of living. Most said they had talked to their doctor about costs, but perhaps too late in the course of their care, Dr. Zafar said.

The findings were seen among respondents who kept diaries and completed a monthly survey for 4 months. Most were white women: 76% had breast cancer. The survey was national, but 23% of the respondents resided in North Carolina. Over half were retired, 33% were college educated, and 65% earned less than $20,000 per year.

Dr. Zafar acknowledged that the findings are limited by the size of study, that all participants were on chemotherapy, and that most participants were breast cancer patients. Also, disease outcomes were not assessed.

Talk to Patients About Costs

According to Dr. Neal J. Meropol, who was the discussant of the papers at the ASCO meeting, these studies drill down from the macroeconomic to the individual cancer patients feeling the burdens of increased insurance costs and more cost sharing for their treatment. Cancer diagnosis is associated with the greatest individual burden for health care costs, with more than 13% of patients spending more than 20% of their income. Additionally, the Kaiser Family Foundation reports 20% of cancer patients use all of their savings on their cancer care.

More 50 million Americans are uninsured, and ample data show that lack of insurance is associated with late diagnosis of cancer. Additionally, every 1% increase in unemployment results in another 1 million citizens losing health insurance, said Dr. Meropol, chief of hematology-oncology, University Hospitals Case Medical Center, Case Western Reserve University, Cleveland. As the numbers of uninsured and underinsured increase, the divide grows between the haves and the have-nots in our society. The disparities will result in more delays in seeking care, decreased access to treatment, and more financial burdens including more personal bankruptcies.

Trends in health care spending threaten our nation’s health. In 2010, the NIH estimates that we spent $264 billion on cancer, $103 billion of that on direct medical costs. We need more patient-physician discussions about the costs of care, as well as educational and support tools to promote effective communication about costs and to guide patients’ evaluations of treatments and their impact on outcomes. We need a better understanding of the factors that drive the costs of cancer care and how the cancer care system can be modified to ensure that all Americans have access to high-quality, cost-effective care.

Dr. Meropol is an advisor or consultant to AstraZeneca, Genentech, Genomic Health, and Helsinn.

CHICAGO – The financial costs of cancer weigh heavily on patients.

Personal bankruptcy is especially a risk for young adult cancer patients with local-stage tumors. Cancer diagnosis patterns indicate patients are likely to delay screening and treatment for less symptomatic cancers during times of recession. Many insured cancer patients report feeling the financial pinch of their out-of-pocket costs, going into debt or forgoing therapies and, in general, becoming less satisfied with their cancer care.

Those were the conclusions from three studies that examined financial implications of a cancer diagnosis and were presented at the annual meeting of the American Society of Clinical Oncology.

Bankruptcies Hit Lung Patients Hardest

First-time bankruptcy filings averaged 0.5% of patients at 1 year after diagnosis and 1.9% at 5 years after diagnosis based on data from 1995-2009, Dr. Scott David Ramsey reported. Average U.S. bankruptcy rates for the entire population are 0.28%.

Based on trend data, the U.S. financial crisis has likely further driven up bankruptcy filings by cancer patients, he added.

Unlike previous studies of personal bankruptcy in cancer patients, which have relied on self-reported data, Dr. Ramsey of the Fred Hutchinson Cancer Research Center, Seattle, and his colleagues looked at actual bankruptcy filings. They married Surveillance, Epidemiology, and End Results (SEER) registry data with federal bankruptcy court records in Western Washington State from 1995-2009.

Bankruptcy filings were compared by cancer type and by bankruptcy type. Time-dependent covariants were used, since filing patterns and types varied after passage of the Bankruptcy Abuse Prevention and Consumer Protection Act (BAPCPA) in 2005. They had no other financial information about patients’ treatment or debt status before their cancer diagnosis.

The researchers found 4,723 SEER registry patients who had filed for bankruptcy and compared them with the other 225,884 cancer patients who did not file for bankruptcy. The five most common cancers associated with bankruptcy filings were lung, thyroid, leukemia/lymphoma, uterine, and colorectal. Those who filed were more likely to be nonwhite, women, younger, and to have local or regional cancers.

The bankruptcy rates were highest for lung cancer patients; the rate was 8% among patients who were still alive 5 years after diagnosis.

Thyroid was the second most likely cancer to be associated with bankruptcy. "We were puzzled by this finding ... but noted that most of these are local stage cancers and likelier to occur in younger women with fewer assets." While the treatment is usually straightforward, the costs can still be considerable, he said. A course of radioactive iodine treatment costs around $40,000.

Dr. Ramsey’s study was funded by the National Cancer Institute.

Breast Cancers Untreated in Recessions

During recessions, the incidence and treatment rates for breast cancer decline, but they don’t vary much for pancreatic cancer, reported Dr. Ronald D. Ennis, director of radiation oncology at St. Luke’s and Roosevelt Hospitals in New York.

For every 1% increase in unemployment, there was a 3% decline in cancer incidence, a 9% drop in radiotherapy, and a 12% decline in surgery. For breast cancer, however, the differences were much greater at 7%, 17%, and 24%, respectively. For pancreatic cancer, the relationship was less evident with no significant difference in incidence, less than 2% decline in radiotherapy, and 9% in surgery.

Delayed screening and care are the probable causes of the inverse relationship between breast cancer and recession, said Dr. Ennis of St. Luke’s–Roosevelt Hospital, Continuum Cancer Centers of New York.

Breast cancer symptoms are less evident and incidence can appear to decline as a result of diagnostic delays from declines in screening. In pancreatic cancer, the symptoms are obvious and hard to ignore, he explained. "People likely put off preventive screening in times of recession, increasing the probability that cancers will be detected later and at more advanced stages ... It’s a case of fewer people getting diagnosed and fewer people getting treated."

The findings were noted in a study that compared data from the SEER database with unemployment rates by month from the Bureau of Labor Statistics from 1983-2007. Education, income, and race were considered in the analysis.

Dr. Ennis had no relevant financial disclosures.

Chemo Costs Pinch Insured Patients

"I have had to go without groceries in the house just to get my medicine."

"My parents pay my medical bills, which is humiliating when I worked 27 years as a teacher."

"I became homeless and our entire family has had to live with a friend several times."

These were just a few of the comments taken from surveys of 216 chemotherapy patients, reported by Dr. S. Yousuf Zafar of Duke University Medical Center, Durham, N.C.

Sponsored by the HealthWell Foundation, the study found considerable financial burdens related to chemotherapy. Although 90% of the survey participants had health insurance, most were underinsured with a mean monthly out-of-pocket expense of $712 (median $459). Most said this represented a financial burden that they described as moderate (39%), significant (30%) or catastrophic (11%).

As a result, 70% reduced leisure activities, 48% turned to their savings, and 18% sold possessions. Because of the cost of their drugs, 26% didn’t fill prescriptions.

Among their coping mechanisms for dealing with drug costs, patients asked for samples, requested cheaper drugs, sought out drugs from another country via the Internet, and shopped for lower prescription prices. To pay for their drugs, 43% borrowed money or used credit. When their cancer symptoms brought them to the hospital, many asked their doctors to let them stay for the night in the hopes of ensuring that their insurance would cover the hospital care.

These patients were less happy with their care and reported a reduced quality and standard of living. Most said they had talked to their doctor about costs, but perhaps too late in the course of their care, Dr. Zafar said.

The findings were seen among respondents who kept diaries and completed a monthly survey for 4 months. Most were white women: 76% had breast cancer. The survey was national, but 23% of the respondents resided in North Carolina. Over half were retired, 33% were college educated, and 65% earned less than $20,000 per year.

Dr. Zafar acknowledged that the findings are limited by the size of study, that all participants were on chemotherapy, and that most participants were breast cancer patients. Also, disease outcomes were not assessed.

Talk to Patients About Costs

According to Dr. Neal J. Meropol, who was the discussant of the papers at the ASCO meeting, these studies drill down from the macroeconomic to the individual cancer patients feeling the burdens of increased insurance costs and more cost sharing for their treatment. Cancer diagnosis is associated with the greatest individual burden for health care costs, with more than 13% of patients spending more than 20% of their income. Additionally, the Kaiser Family Foundation reports 20% of cancer patients use all of their savings on their cancer care.

More 50 million Americans are uninsured, and ample data show that lack of insurance is associated with late diagnosis of cancer. Additionally, every 1% increase in unemployment results in another 1 million citizens losing health insurance, said Dr. Meropol, chief of hematology-oncology, University Hospitals Case Medical Center, Case Western Reserve University, Cleveland. As the numbers of uninsured and underinsured increase, the divide grows between the haves and the have-nots in our society. The disparities will result in more delays in seeking care, decreased access to treatment, and more financial burdens including more personal bankruptcies.

Trends in health care spending threaten our nation’s health. In 2010, the NIH estimates that we spent $264 billion on cancer, $103 billion of that on direct medical costs. We need more patient-physician discussions about the costs of care, as well as educational and support tools to promote effective communication about costs and to guide patients’ evaluations of treatments and their impact on outcomes. We need a better understanding of the factors that drive the costs of cancer care and how the cancer care system can be modified to ensure that all Americans have access to high-quality, cost-effective care.

Dr. Meropol is an advisor or consultant to AstraZeneca, Genentech, Genomic Health, and Helsinn.