Disparities within the U. S. health care system result in serious impacts on access to care for patients with cancer at all stages from screening and prevention to treatment and survival. Access barriers further lead to disparities in the quality of care received. These concerns led the American Cancer Society to launch a national effort in 2007 calling for system reform that will provide “4 As coverage”:

•  Adequate—timely access to the full range of evidence-based health care including prevention and early detection.
•  Affordable—costs are based on the person’s ability to pay.
•  Available—coverage available regardless of health status or prior claims.
•  Administratively simple—processes are easy to understand and navigate. (1) (Sack, K. Cancer society focuses its ads on the uninsured. New York Times, August 31, 2007)

Access barriers take a wide variety of forms and affect many disadvantaged groups within the U. S. population. The single most important aspect of access is the status of the patient’s health insurance coverage. (2) (Siminoff, LA, Ross, L. Access and equity to cancer care in the USA: a review and assessment. Postgrad Med J 81: 674, 2005) For all types of cancer, the uninsured are 1.6 times more likely to die within five years compared to cancer patients with insurance. (3) (Ward, E, Halpern, M Schrag, N et al. Association of insurance with cancer care utilization and outcomes. CA Cancer J Clin 58: 19-20, 2008) 8/1/9

The lack of health insurance is much more common among racial and ethnic minorities than among whites. According to the U. S. Census Bureau, when 15.9 percent of the population was uninsured in 2005, the uninsurance rate for whites was 11.3 percent compared to 19.6 percent for non-Hispanic blacks and 32.7 percent for Hispanics. (4) (Income, poverty, and health insurance coverage in the United States: 2005, update.)

These examples illustrate how the lack of insurance adversely impacts patients with cancer across the entire spectrum of care:
•  Women aged 40 to 64 without insurance are only half as likely to have had a mammogram within the last two years as those with insurance. (5) (Ibid #3)
•  One in four uninsured cancer patients delay or forego care because of cost. (6) (Ibid #3)
•  Uninsured African-American women with breast cancer have a five-year survival rate of only 63 percent compared to 89 percent for insured Caucasian women. (7) (Ibid # 3)
•  Cancer has become a chronic disease for the estimated 12 million cancer survivors in this country, many of whom have co-morbidities such as heart disease, diabetes and arthritis as well as under-recognized and under-treated anxiety and depression. A 2008 national study found that uninsured cancer patients were three times more likely than their insured counterparts to have not seen health professional in the last year, twice as likely to have no regular source of care, and five times more likely to use the emergency room for care. (8) (Wilper, AP, Woolhandler, S, Lasser, KE et al. A national study of chronic disease prevalence and access to care in uninsured U. S. adults. Ann Intern Med 149: 170-76, 2008)

Under-insurance is another big problem for many patients with cancer, since many insurance policies provide little protection against the rapidly rising costs of cancer care. Two examples illustrate the financial burdens placed on cancer patients and their families even when insured:

•  Despite being consistently insured, a 2006 study by the Kaiser Family Foundation and the Harvard School of Public Health found that almost one-half of cancer patients used up most or all of their life savings, while 8 percent were turned away or unable to get a specific treatment because of insurance issues and 3 percent ended up declaring bankruptcy. (9) (Kaiser Family Foundation. Survey of families affected by cancer shows people with and without health insurance suffer serious financial hardships. USA Today/Kaiser Family Foundation/Harvard School of Public Health National Survey of Households Affected by Cancer, November 20, 2006)
•  Some “insurance” policies are ludicrous in the extent of their undercoverage—one example is the limited-benefit basic cancer policy marketed by AllState, starting at $420 a year for family “coverage”, which pays a one-time benefit of $2,000 if diagnosed for the first time with cancer (other than skin cancer). (10) (McQueen, MP. The shifting calculus of workplace benefits. Wall Street Journal, January 16, 2007: D1)

Do patients with cancer covered by Medicare and Medicaid fare any better than their counterparts with or without private insurance? Here again, their access to care falls far short of their needs. An increasing number of physicians will not accept new patients on Medicare or Medicaid because of low reimbursement. Medicare Advantage plans may impose high cost burdens on patients who are referred to out-of-network physicians and facilities for cancer care, sometimes leading to disenrollment. (11) (Medicare Rights Center. Why consumers disenroll from Medicare private health plans. Summer 2010) Medicaid remains an underfunded porous safety net with many restrictions on coverage varying from state to state. (12) (Ramirez de Arrelano, AB, Wolfe, SM. Unsettling Scores: A Ranking of State Medicaid Programs. Washington, D.C. Public Citizen Health Research Group, April 2007)  Medicaid enrollees are more likely to have late-stage cancers when diagnosed, resulting in worse outcomes. (13) (Halpern, MT, Ward, EM, Pavluck, AL et al. Association of insurance status and ethnicity with cancer stage at diagnosis for 12 cancer sites: A retrospective analysis. Lancet Oncol 9 (3): 222-31, 2008) Many oncologists refuse to provide chemotherapy for Medicaid patients in their offices due to low reimbursement, sending them on to hospitals. (14) (Lung Cancer Connections. Caring 4Cancer. An introduction to Medicaid. Web site accessed October 31, 2008)

Because of access barriers to care and other factors in our market-based system of care (based as it is on ability to pay, not medical need), the quality of care for cancer patients in our present system leaves much to be desired for these kinds of reasons:

•  Perverse financial incentives pervade our business-oriented health care system. Hospitals and physicians make higher revenues by providing services that are often unnecessary, inappropriate or even harmful. When Medicare reduced reimbursement rates for outpatient chemotherapy drugs in 2005, oncologists switched from drugs that were most reduced in profitability to other high-margin drugs at increased cost but without good evidence of improved outcomes. (15) (Jacobson, M, Earle, CC, Price, M, Newhouse, JP. How Medicare’s payment cuts for cancer chemotherapy drugs changed patterns of treatment. Health Affairs 29 (7): 1391-99, 2010)  A 2008 study by United Health found that Procrit, a very expensive anti-anemia drug also highly remunerative to prescribing oncologists, was being prescribed for about one-third of patients who were not anemic at all. (16) (Culliton, BJ. Interview: Insurers and ‘targeted biologics’ for cancer: A conversation with Lee N Newcomer. Health Affairs Web Exclusive 27 (1): W 41-W51, 2008)  More than 30 million full-body CT scans are performed each year for screening purposes despite the lack of evidence of benefit or the approval by the FDA or the American College of Radiology. (17) (Brenner, DJ, Hall, EJ. Computed tomography—An increasing source of radiation exposure. N Engl J Med 357: 2277-84, 2007)  Over-screening, over-diagnosis and over-treatment of prostate cancer are endemic in this country, without evidence of improved outcomes. A 2009 report of a randomized ten-year trial of 76,000 American men found that widespread screening does not lower the death rate from the disease. (18)  (Andriole, GL, Grubb, RL, Buys, SS et al. Mortality results from a randomized prostate-cancer screening trial. N Engl J Med online. March 18, 2009).  Dr. Peter Bach, oncologist at Sloan-Kettering Cancer Center and former senior advisor on health care quality at the Centers for Medicare and Medicaid Services (CMS), estimates that 30 to 40 percent of spending on cancer care is of marginal value. (19) (Bach, P, as quoted in McNeil, C. Sticker shock sharpens focus on biologics. News. J Natl. Cancer Inst 99 (12): 911, 2007)
•  We have an industry-friendly system of deciding what services and treatments will be covered. Coverage policies are not rigorously evidence-based, and the use of cost-effectiveness as a criterion for coverage decisions is vigorously opposed by industry. Many expensive and toxic drugs are used for indications beyond FDA approval—so-called “off label” use. In 2009, Medicare coverage of off-label cancer drugs was expanded despite the lack of clinical evidence for effectiveness. (20) (Abelson, R, Pollack, A. Medicare widens drugs it accepts for cancer care: More off-label uses. New York Times, January 27, 2009)
•  Quality of care breaks down at the interface between primary care and oncology-related subspecialty care. A just-published monograph by the National Cancer Institute documents the scope and magnitude of this serious problem, ranging from lack of communication and collaboration to overlapping and ambiguous roles. (National Cancer Institute. Division of Cancer Control and Population Sciences. Toward Improving the Quality of Cancer Care: Addressing the Interfaces of Primary and Oncology-Related Subspecialty Care. Number 40, 2010)  For the best quality of care, cancer patients need to be followed by both groups of physicians working together in their areas of expertise. One study of almost 15,000 survivors of colorectal cancer, for example, found that patients followed by oncologists were less likely to receive influenza vaccination, cervical screening and bone densitrometry, while those followed by primary care physicians reported less screening by colonoscopy and mammography. (21) (Earle, CC, Neville, BA. Under-use of necessary care among cancer survivors. Cancer 101 (8): 1712-19, 2004) Continuity of primary care throughout the care of cancer from screening to survivorship is essential to the best outcomes. We cannot expect subspecialists to care for co-morbidities so common among cancer patients, and treatment decisions often require consideration of co-morbidities, personal and family considerations.

As is clear from the above, access and quality of care are closely entwined and multi-dimensional. Addressing these problems is a complex challenge since they are embedded in a dysfunctional health care system. But that is the subject of our next post, which will consider to what extent the new health care reform law, the Patient Protection and Affordable Care Act of 2010, can remedy these problems.

Adapted in part from The Cancer Generation: Baby Boomers Facing a Perfect Storm, 2009, with permission of the publisher, Common Courage Press.