Despite their great need for medical services, cancer survivors may experience barriers to accessing care. Cancer treatment may result in financial hardship ^4;5 and inability to afford medical copayments, prescription medications, and medical services perceived as being non-essential (e.g., dental and mental health care). In addition, cancer-related employment changes ^3;6 may result in loss of health insurance coverage, and survivors who qualify for government insurance may lose this coverage once their initial treatment is complete. However, one investigation of insurance coverage⁷ concluded that cancer survivors 65 years of age and under were no more likely to be uninsured than adults of similar age, sex, and race/ethnicity.

Previous examinations of health care utilization among cancer survivors, have primarily used administrative databases such as the SEER-Medicare database^8–10. While informative, these studies are limited in that they only included older cancer survivors and cannot elucidate reasons for forgoing medical care, such as financial concern. There are also differences in health care access between older and younger survivors, suggesting the need to examine financial barriers to care separately by age group.

Consistent with earlier research examining health care access in younger survivors using the NHIS⁷, we found that cancer survivors under the age of 65 years were more likely to delay or forgo all types of medical care when compared to their same age peers without a history of cancer.. This is concerning because individuals who are diagnosed and treated as younger adults, especially those with early stage cancers, are expected to live many years after their cancer diagnosis, making access to appropriate preventive and health maintenance services crucial for their long-term health and well-being¹⁴. It is likely that the comparison group of adults without a history of cancer is healthier in the younger age group, increasing the effect of cancer history. In fact, a large percentage of adults under 65 years without cancer reported no comorbid medical conditions (65.5%), compared with only 36.4% of younger cancer survivors.

In contrast, cancer history was not associated with delaying or forgoing care in those persons 65 years and older. The greater incidence of comorbid medical conditions in the older group and the resulting need for more medical services may account for the diminished effect of cancer history in this group. The difference in distribution of comorbidities between survivors and adults without cancer is much less striking in persons 65 years and older compared to the younger age group. Previous research examining receipt of health care services among cancer survivors 65 years and older using the SEER-Medicare database showed mixed results for cancer history. Long-term colorectal cancer survivors were less likely to receive necessary medical care services such as appropriate follow up for hospitalizations and chronic medical conditions such as heart disease and diabetes ⁸, One longitudinal study of elderly nonmetastatic breast cancer survivors found that survivors were consistently less likely to receive preventive health services compared to matched controls¹⁵, but an earlier cross-sectional study found that survivors were more likely to receive preventive health services ⁹. Importantly, these studies did not focus specifically on financial barriers to care or ethnic disparities among survivors.

Rates of forgoing care were not consistent across cancer sites. Consistently, women with cervical cancer reported higher rates of forgoing care compared to breast, prostate, melanoma, and multiple cancer survivors. Future research is needed to better examine financial barriers to care among this vulnerable group of cancer survivors. Interestingly, few differences were observed by time since diagnosis. Survivors within one year of diagnosis were more likely to delay care because of cost, possibly due to high out of pocket costs during initial cancer treatment.

As found in previous population- based research comparing cancer survivors and adults without cancer ^3;16, adults with and without a cancer history from our sample differed in several ways. Adults reporting a history of cancer were more likely to be older, female, and white. This is consistent with SEER cancer registry estimates showing that cancer prevalence increases with age, females comprise the majority of persons ever diagnosed with cancer, the female proportion increases with increasing time since diagnosis, and the vast majority of cancer survivors currently living in the United States are white¹. It has also been suggested that underreporting of cancer history on self-report surveys may be more likely to occur among men ¹⁷, possibly resulting in a larger proportion of female cancer survivors identified on the NHIS.

In the total sample of cancer survivors, Hispanic and black cancer survivors were more likely to forgo prescription medications and dental care than white survivors and Hispanic survivors were more likely to forgo medical care. This is consistent with previous survey research which found that black and Hispanic cancer survivors were more likely to report that costs of medication, diagnostic tests, and hospitalization were a barrier to needed cancer treatment¹⁸, Our study builds on this prior survey by using a national population-based sample of US survivors and including a comparison sample of adults without cancer. Our questions about forgoing medical care were not cancer-specific which may be more relevant to this population of long-term survivors. Other studies have documented high levels of financial stress and concerns about medical costs among minority cancer survivors¹⁹, but it is not known whether these concerns resulted in forgone medical care.

Adjusted models suggest that race/ethnicity disparities were largely due to difference in socioeconomic status and medical insurance coverage. The occurrence of medical comorbidities may also contribute to differences in forgoing care. Among survivors and adults without cancer, those adults reporting more comorbidities were more likely to forgo care (data not shown). This is worrisome as cancer treatment can be associated with late and long-term health effects¹⁴. If these same conditions exacerbate financial obstacles to treatment, then health disparities are likely to be exacerbated.

Relatively larger disparities between ethnic minority and white persons were observed among those individuals 65 years and older compared to the under 65 group, but these disparities were similar in the survivor and general adult populations. The finding that black older adults (with or without a cancer history) are more likely to forgo medical care is consistent with administrative database research documenting that older African-American women are less likely to receive preventive health services⁹, black breast cancer survivors are less likely to receive influenza vaccination, bone densitometry, and mammograms¹⁵, and non-white colorectal cancer survivors are less likely to receive influenza vaccination²⁰ and other preventive care services^20;21. Examining ethnic disparities was not a focus of these studies, so comparisons in disparities were not made between adults with and without cancer.

This study adds to the body of knowledge on health care access disparities in cancer survivors by examining non-receipt or delays in care due to financial concerns using a representative sample of the US population, however there are several limitations. First, this study relied on self-report of delaying or forgoing care due to financial concerns. A respondent answering “no” to the question “Was there any time when you needed medical care, but did not get it because you couldn’t afford it?” could have two possibilities in mind. One, no care was needed and therefore financial concerns were irrelevant, or two, care was needed and received. Thus, differences in forgoing care may also reflect differences in health and perception of needing care. Cancer survivors may be sensitized to perceive greater health care needs, thereby increasing opportunities to forgo or delay health care. Self-reports of forgoing or delaying care may also be subject to recall bias. Perhaps medical care that is not received is more salient to cancer survivors than to the general population because of vigilance for signs of cancer recurrence. Second, although we stratified by age, differences in the age distribution of the cancer survivors and the general population may have resulted in residual confounding. In addition, our assessment of comorbidities was incomplete. We relied on self-reported comorbidities that were asked for other purposes on the NHIS and were not able to assess the currency or severity of every condition. Thus, additional research among survivors is needed to better understand the role of comorbidities in forgoing medical care due to financial strain. Finally, although the sample is representative of community dwelling adults, it is not representative of the entire population of cancer survivors, especially those in poorest health who might reside in hospices, nursing homes, or hospitals or who were too ill to complete the interview¹⁷. Thus, our results might not generalize to survivors diagnosed with the most advanced disease and with sites associated with relatively short survival. NHIS also does not collect information about cancer stage at diagnosis, current treatment for cancer, or cancer recurrence, so we can not characterize these features of our survivor population.

This paper identifies an important issue is survivorship care, namely that financial concerns may prevent cancer survivors, particularly those under the age of 65, from accessing needed medical services. However, given the preliminary nature of this data, further research is needed to answer crucial questions in this area. First, future studies should better characterize the types of health care services that survivors delay and forgo because of financial concerns. It is important to know if the services are cancer-related (e.g., screening for recurrence or second cancers, assessment or treatment of late-effects) or related to other comorbid conditions. Future research should also investigate whether cancer survivors seek a greater number of services overall and/or choose to forgo less crucial or elective services. Information about the type of care that was not received is not available in the NHIS, or any other population-based dataset of which we are aware. Therefore targeted research is needed to ask survivors about their experiences forgoing care because of medical cost and the implications for their health. It is also important to better understand the role of insurance coverage and out of pocket expenses when evaluating financial barriers to needed care, particularly in light of changes in the health insurance industry such as increases in high deductible plans, increased insurance coverage in certain states, and increased coverage for mental health care services. Finally, it is crucial to investigate the impact of forgoing care on survivors’ physical and mental well-being, length of survival, and cost of care.