Access, Affordability, and Sustainability: Barriers to High-Quality Care in a High-Income Country
CC BY-NC-ND 4.0 · Indian J Med Paediatr Oncol 2022; 43(03): 285-288
DOI: DOI: 10.1055/s-0042-1748798
Introduction
There is a perception among oncologists that the field of global oncology pertains only to matters related to low- and middle-income countries (LMICs). It stems from a perception that considers lack of access to cancer care and unaffordability of therapy as problems that plague the less affluent regions of the world. In this commentary, we aim to shed light on the fact that these issues do not respect the dichotomies of high-income versus low-income countries or the global north versus south.
When physicians from high-income countries were surveyed about the access to cancer medicines deemed essential by the World Health Organization, a large majority of them felt that these medicines, including immunotherapy, were universally accessible (i.e., no substantial out-of-pocket expense for >90% of patients).[1] Unfortunately, the inaccessibility and unaffordability of cancer care are profound even in high-income countries, although we perceive it as otherwise. This inaccurate fact stated by practicing oncologists makes it clear that their current understanding of the accessibility and affordability of cancer care as oncologists is faulty.
Almost 27 million (8.6%) Americans were still uninsured in 2016.[2] A large proportion of cancer survivors experience financial hardships due to cancer.[3] Even if we falsely assume that the out-of-pocket expense for the individual is marginal, the economic burden of cancer care is steadily rising. It is definitely not sustainable for the economy in the long run.
Publication History
Article published online:
02 July 2022
© 2022. Indian Society of Medical and Paediatric Oncology. This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)
Thieme Medical and Scientific Publishers Pvt. Ltd.
A-12, 2nd Floor, Sector 2, Noida-201301 UP, India
Introduction
There is a perception among oncologists that the field of global oncology pertains only to matters related to low- and middle-income countries (LMICs). It stems from a perception that considers lack of access to cancer care and unaffordability of therapy as problems that plague the less affluent regions of the world. In this commentary, we aim to shed light on the fact that these issues do not respect the dichotomies of high-income versus low-income countries or the global north versus south.
When physicians from high-income countries were surveyed about the access to cancer medicines deemed essential by the World Health Organization, a large majority of them felt that these medicines, including immunotherapy, were universally accessible (i.e., no substantial out-of-pocket expense for >90% of patients).[1] Unfortunately, the inaccessibility and unaffordability of cancer care are profound even in high-income countries, although we perceive it as otherwise. This inaccurate fact stated by practicing oncologists makes it clear that their current understanding of the accessibility and affordability of cancer care as oncologists is faulty.
Almost 27 million (8.6%) Americans were still uninsured in 2016.[2] A large proportion of cancer survivors experience financial hardships due to cancer.[3] Even if we falsely assume that the out-of-pocket expense for the individual is marginal, the economic burden of cancer care is steadily rising. It is definitely not sustainable for the economy in the long run.
The US Healthcare System: An Eagle's Eye View
In the United States, the government provides two types of health coverage for patients under the supervision of the Center for Medicare and Medicaid Services (CMS). Medicare for patients more than 65 years of age and Medicaid for the disabled. Most private and public sector employers provide health insurance as part of the employee benefits.[4] A private health insurance coverage can be bought for a monthly fee from the marketplace for the self-employed. Health insurance does not cover all healthcare expenses (referred to as “cost-sharing”). Health insurance would start covering the costs after an initial “deductible” is being met by the patient, which can be ranging from hundred to a few thousand dollars depending on the plan. Then, once the patient goes for a doctor visit, he/she may have to pay a small fee (referred to as co-pay) at the respective offices, usually about 25 to 100 dollars.
Even after the patient meets the deductible, most insurance plans pay only a part of the cost, ranging from 60 to 80%. The patient has to pay the remainder of the price (“co-insurance”). All these costs are covered by the patient account for the “out-of-pocket-maximum,” which is usually in the order of a few thousand dollars. Once the patient meets the “out-of-pocket- maximum,” the subscribed health insurance plan usually covers the remainder of the cost. The “Donut hole” is the gap in insurance coverage when a patient is responsible for the cost of the drugs after an initial period where the plan pays for the medications. If the patient is “uninsured” or “self-paid,” they have to depend on the safety net hospitals that may provide some financial assistance.
Pharmaceutical benefits managers (PBMs) manage the prescription drug benefits for private insurers and government health plans.[5] Even though the PBMs were introduced to decrease the cost of prescription medicines, in reality, they work as a middleman, leading to increased cost of drugs, lower value, and increased administrative burden.
The Three-Legged Problem
We can categorize the problems in the American healthcare system into three major parts.
First, it is inaccessible. The inaccessibility of cancer care can be due to multiple reasons—regional, geographic, ethnic, racial, or socioeconomic disparities. For instance, the survival of breast cancer patients is adversely affected by where they live; patients who live in poorer neighborhoods have reported decreased survival rates.[6] The racial disparities, Black, Hispanic, and Native American patients have more inadequate access to cancer care and consequently reported worse survival rates, have been well established in multiple cancers, including prostate cancer,[7] [8] cervical cancer,[9] and head and neck cancers.[10] Geographical disparities in cancer care have been well documented in various cancers, including breast cancer, colon cancer, and prostate cancer.[11] [12] For instance, geographical differences and socioeconomic deprivation lead to late-stage diagnosis and worse survival in colon cancer.[13] Unfortunately, all of these disparities work hand-in-hand to make timely cancer care inaccessible to the most vulnerable population.
Second, it is unaffordable. Financial toxicity in cancer care is defined as the harmful personal financial burden faced by patients receiving cancer care.[4] Catastrophic health expenditure refers to any medical expense that can threaten the household's financial stability.[14] One in three Americans experiences financial burden as a result of medical care.[15] The risk of a high financial burden is significantly greater in patients with cancer than patients with other chronic medical conditions.[16] Thirteen percent of the nonelderly patients with cancer spend at least 20% of their income, and 50% of the elderly (Medicare beneficiaries) spend at least 10% of their income on cancer treatment-related out-of-pocket expenses.[16] [17] Patients with cancer had a nearly threefold more significant risk of declaring personal bankruptcy. Those bankrupt patients had a 79% higher mortality risk than those who did not.[15] [18] Zafar et al explained the three possible reasons behind the relationship between financial distress and a higher risk of mortality[15]: poorer subjective well-being,[19] impaired health-related quality of life,[20] and subpar quality of care.[21]
Finally, it is unsustainable. The US healthcare expenditure is almost 3 trillion dollars/year (almost equal to the gross domestic product [GDP] of India in 2021).[22] It is nearly identical to 18% of the GDP of the United States. The cost of healthcare is rising year by year. Cancer care costs are estimated to grow by 34 to 246 billion dollars by 2030.[23] It is unsustainable for the country's economy.
Contributing Factors for Financial Toxicity
Multiple factors contribute to financial toxicity in the United States ([Table 1]). Unnecessary use of diagnostic testing leads to wastage of almost 210 billion dollars per year.[24] Overdiagnosis (when a condition is diagnosed that would otherwise not go on to cause symptoms or death during a patient's lifetime) and overtreatment (when medical services are provided with a higher volume or cost than appropriate) are also pervasive problems.[25] [26] It is estimated that up to 30% of the US healthcare cost is wasted money.[27] The use of low-value practices, including the injudicious use of expensive treatment modalities that offer a marginal benefit at best, also leads to substantial financial toxicity. A lack of pricing competition and choice also leads to increased cost of healthcare products and technologies.[28] The CMS is banned from negotiating drug prices which affects the medication cost for millions of Americans. A study that reviewed the cost of cancer medicines (e.g., rituximab and bevacizumab) found that Americans are paying almost twice the price compared with Norway, likely due to the lack of negotiating power for CMS.[28] The high cost of innovative therapeutic techniques is also a contributing factor, especially when used in terminal disease.[28] The use of more extended course radiation treatment and indiscriminate use of proton therapy may also contribute to financial toxicity.[29] Another cause is the excess burden of billing and insurance-related administrative cost—both by the insurer and the provider. It was estimated by a recent study in 2017 by Woolhandler and Himmelstein that the United States spends 1.1 trillion dollars on administrative costs, which is almost one-third of the healthcare expenditure.[30]
1. Overdiagnosis |
2. Overtreatment |
3. Unnecessary use of diagnostic testing |
4. Use of low value practices |
5. Injudicious use of expensive treatment modalities |
6. Lack of pricing competition and choice |
7. High price of innovative therapeutic techniques |
8. Use of extended course radiation treatment and indiscriminate use of proton therapy |
9. Excess burden of billing and insurance-related administrative cost |
10. Lack of awareness of the cost among physicians and the patients |
11. Lack of price transparency |
- Fundytus A, Sengar M, Lombe D. et al. Access to cancer medicines deemed essential by oncologists in 82 countries: an international, cross-sectional survey. Lancet Oncol 2021; 22 (10) 1367-1377
- American Society of Clinical Oncology. The State of Cancer Care in America, 2017: a report by the American Society of Clinical Oncology. J Oncol Pract 2017; 13 (04) e353-e394
- Gordon LG, Merollini KMD, Lowe A, Chan RJ. A systematic review of financial toxicity among cancer survivors: we can't pay the co-pay. Patient 2017; 10 (03) 295-309
- Zafar SY, Peppercorn JM, Schrag D. et al. The financial toxicity of cancer treatment: a pilot study assessing out-of-pocket expenses and the insured cancer patient's experience. Oncologist 2013; 18 (04) 381-390
- Royce TJ, Schenkel C, Kirkwood K, Levit L, Levit K, Kircher S. Impact of pharmacy benefit managers on oncology practices and patients. JCO Oncol Pract 2020; 16 (05) 276-284
- Beyer KMM, Zhou Y, Laud PW. et al. Mortgage lending bias and breast cancer survival among older women in the United States. J Clin Oncol 2021; 39 (25) 2749-2757
- Mahal BA, Chen YW, Muralidhar V. et al. Racial disparities in prostate cancer outcome among prostate-specific antigen screening eligible populations in the United States. Ann Oncol 2017; 28 (05) 1098-1104
- Underwood W, De Monner S, Ubel P, Fagerlin A, Sanda MG, Wei JT. Racial/ethnic disparities in the treatment of localized/regional prostate cancer. J Urol 2004; 171 (04) 1504-1507
- Yoo W, Kim S, Huh WK. et al. Recent trends in racial and regional disparities in cervical cancer incidence and mortality in United States. PLoS One 2017; 12 (02) e0172548 DOI: 10.1371/journal.pone.0172548.
- Albert A, Giri S, Kanakamedala M. et al. Racial disparities in tumor features and outcomes of patients with squamous cell carcinoma of the tonsil. Laryngoscope 2019; 129 (03) 643-654
- Goodwin JS, Freeman JL, Mahnken JD, Freeman DH, Nattinger AB. Geographic variations in breast cancer survival among older women: implications for quality of breast cancer care. J Gerontol A Biol Sci Med Sci 2002; 57 (06) M401-M406
- Jemal A, Ward E, Wu X, Martin HJ, McLaughlin CC, Thun MJ. Geographic patterns of prostate cancer mortality and variations in access to medical care in the United States. Cancer Epidemiol Biomarkers Prev 2005; 14 (03) 590-595
- Lin Y, Wimberly MC. Geographic variations of colorectal and breast cancer late-stage diagnosis and the effects of neighborhood-level factors. J Rural Health 2017; 33 (02) 146-157
- Boby JM, Rajappa S, Mathew A. Financial toxicity in cancer care in India: a systematic review. Lancet Oncol 2021; 22 (12) e541-e549
- Zafar SY. Financial toxicity of cancer care: it's time to intervene. J Natl Cancer Inst 2015; 108 (05) djv370 DOI: 10.1093/jnci/djv370.
- Bernard DS, Farr SL, Fang Z. National estimates of out-of-pocket health care expenditure burdens among nonelderly adults with cancer: 2001 to 2008. J Clin Oncol 2011; 29 (20) 2821-2826
- Davidoff AJ, Erten M, Shaffer T. et al. Out-of-pocket health care expenditure burden for Medicare beneficiaries with cancer. Cancer 2013; 119 (06) 1257-1265
- Ramsey S, Blough D, Kirchhoff A. et al. Washington State cancer patients found to be at greater risk for bankruptcy than people without a cancer diagnosis. Health Aff (Millwood) 2013; 32 (06) 1143-1152
- Hanratty B, Holland P, Jacoby A, Whitehead M. Financial stress and strain associated with terminal cancer–a review of the evidence. Palliat Med 2007; 21 (07) 595-607
- Fenn KM, Evans SB, McCorkle R. et al. Impact of financial burden of cancer on survivors' quality of life. J Oncol Pract 2014; 10 (05) 332-338
- Dusetzina SB, Winn AN, Abel GA, Huskamp HA, Keating NL. Cost sharing and adherence to tyrosine kinase inhibitors for patients with chronic myeloid leukemia. J Clin Oncol 2014; 32 (04) 306-311
- Patel MS, Reed DA, Loertscher L, McDonald FS, Arora VM. Teaching residents to provide cost-conscious care: a national survey of residency program directors. JAMA Intern Med 2014; 174 (03) 470-472
- Mariotto AB, Enewold L, Zhao J, Zeruto CA, Yabroff KR. Medical care costs associated with cancer survivorship in the United States. Cancer Epidemiol Biomarkers Prev 2020; 29 (07) 1304-1312
- Clarke JL, Laskowski RJ, Coons C. et al. Proceedings of the Christiana Care Health System Value Institute Value Symposium. Am J Med Qual 2012; 27 (6, Suppl): 3S-20S
- Welch HG, Black WC. Overdiagnosis in cancer. J Natl Cancer Inst 2010; 102 (09) 605-613
- Lyu H, Xu T, Brotman D. et al. Overtreatment in the United States. PLoS One 2017; 12 (09) e0181970 DOI: 10.1371/journal.pone.0181970.
- Schnipper LE, Smith TJ, Raghavan D. et al. American Society of Clinical Oncology identifies five key opportunities to improve care and reduce costs: the top five list for oncology. J Clin Oncol 2012; 30 (14) 1715-1724
- Prasad V, De Jesús K, Mailankody S. The high price of anticancer drugs: origins, implications, barriers, solutions. Nat Rev Clin Oncol 2017; 14 (06) 381-390
- Santos PMG, Mathis NJ, Lapen K. et al. Assessment of Guideline-Nonconcordant Radiotherapy in Medicare Beneficiaries With Metastatic Cancer Near the End of Life, 2015- 2017. JAMA Health Forum 2022; e214468-e214468
- Woolhandler S, Himmelstein DU. Single-payer reform: the only way to fulfill the president's pledge of more coverage, better benefits, and lower costs. Ann Intern Med 2017; 166 (08) 587-588
- Allan GM, Lexchin J. Physician awareness of diagnostic and nondrug therapeutic costs: a systematic review. Int J Technol Assess Health Care 2008; 24 (02) 158-165
- Feldman LS, Shihab HM, Thiemann D. et al. Impact of providing fee data on laboratory test ordering: a controlled clinical trial. JAMA Intern Med 2013; 173 (10) 903-908
- Institute of Medicine. 2013. Best Care at Lower Cost: The Path to Continuously Learning Health Care in America. Washington, DC: The National Academies Press. https://doi.org/10.17226/13444.
- Hahn C, Kavanagh B, Bhatnagar A. et al. Choosing wisely: the American Society for Radiation Oncology's top 5 list. Pract Radiat Oncol 2014; 4 (06) 349-355
- Carrera PM, Kantarjian HM, Blinder VS. The financial burden and distress of patients with cancer: Understanding and stepping-up action on the financial toxicity of cancer treatment. CA Cancer J Clin 2018; 68 (02) 153-165
- Sachs R. Administration finalizes most-favored nation drug pricing rule at the last minute. Health Aff Blog 2020
- Butcher L. Price transparency. Hosp Health Netw. Jun 2014;88(6):32–7, 1.
- Nair R, Radhakrishnan VS, Mallath MK. Rituximab biosimilars for B-cell lymphomas: a decade of real-world experience from India. Lancet Haematol 2021; 8 (08) e548-e549
Address for correspondence
Publication History
Article published online:
02 July 2022
© 2022. Indian Society of Medical and Paediatric Oncology. This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)
Thieme Medical and Scientific Publishers Pvt. Ltd.
A-12, 2nd Floor, Sector 2, Noida-201301 UP, India
- Fundytus A, Sengar M, Lombe D. et al. Access to cancer medicines deemed essential by oncologists in 82 countries: an international, cross-sectional survey. Lancet Oncol 2021; 22 (10) 1367-1377
- American Society of Clinical Oncology. The State of Cancer Care in America, 2017: a report by the American Society of Clinical Oncology. J Oncol Pract 2017; 13 (04) e353-e394
- Gordon LG, Merollini KMD, Lowe A, Chan RJ. A systematic review of financial toxicity among cancer survivors: we can't pay the co-pay. Patient 2017; 10 (03) 295-309
- Zafar SY, Peppercorn JM, Schrag D. et al. The financial toxicity of cancer treatment: a pilot study assessing out-of-pocket expenses and the insured cancer patient's experience. Oncologist 2013; 18 (04) 381-390
- Royce TJ, Schenkel C, Kirkwood K, Levit L, Levit K, Kircher S. Impact of pharmacy benefit managers on oncology practices and patients. JCO Oncol Pract 2020; 16 (05) 276-284
- Beyer KMM, Zhou Y, Laud PW. et al. Mortgage lending bias and breast cancer survival among older women in the United States. J Clin Oncol 2021; 39 (25) 2749-2757
- Mahal BA, Chen YW, Muralidhar V. et al. Racial disparities in prostate cancer outcome among prostate-specific antigen screening eligible populations in the United States. Ann Oncol 2017; 28 (05) 1098-1104
- Underwood W, De Monner S, Ubel P, Fagerlin A, Sanda MG, Wei JT. Racial/ethnic disparities in the treatment of localized/regional prostate cancer. J Urol 2004; 171 (04) 1504-1507
- Yoo W, Kim S, Huh WK. et al. Recent trends in racial and regional disparities in cervical cancer incidence and mortality in United States. PLoS One 2017; 12 (02) e0172548 DOI: 10.1371/journal.pone.0172548.
- Albert A, Giri S, Kanakamedala M. et al. Racial disparities in tumor features and outcomes of patients with squamous cell carcinoma of the tonsil. Laryngoscope 2019; 129 (03) 643-654
- Goodwin JS, Freeman JL, Mahnken JD, Freeman DH, Nattinger AB. Geographic variations in breast cancer survival among older women: implications for quality of breast cancer care. J Gerontol A Biol Sci Med Sci 2002; 57 (06) M401-M406
- Jemal A, Ward E, Wu X, Martin HJ, McLaughlin CC, Thun MJ. Geographic patterns of prostate cancer mortality and variations in access to medical care in the United States. Cancer Epidemiol Biomarkers Prev 2005; 14 (03) 590-595
- Lin Y, Wimberly MC. Geographic variations of colorectal and breast cancer late-stage diagnosis and the effects of neighborhood-level factors. J Rural Health 2017; 33 (02) 146-157
- Boby JM, Rajappa S, Mathew A. Financial toxicity in cancer care in India: a systematic review. Lancet Oncol 2021; 22 (12) e541-e549
- Zafar SY. Financial toxicity of cancer care: it's time to intervene. J Natl Cancer Inst 2015; 108 (05) djv370 DOI: 10.1093/jnci/djv370.
- Bernard DS, Farr SL, Fang Z. National estimates of out-of-pocket health care expenditure burdens among nonelderly adults with cancer: 2001 to 2008. J Clin Oncol 2011; 29 (20) 2821-2826
- Davidoff AJ, Erten M, Shaffer T. et al. Out-of-pocket health care expenditure burden for Medicare beneficiaries with cancer. Cancer 2013; 119 (06) 1257-1265
- Ramsey S, Blough D, Kirchhoff A. et al. Washington State cancer patients found to be at greater risk for bankruptcy than people without a cancer diagnosis. Health Aff (Millwood) 2013; 32 (06) 1143-1152
- Hanratty B, Holland P, Jacoby A, Whitehead M. Financial stress and strain associated with terminal cancer–a review of the evidence. Palliat Med 2007; 21 (07) 595-607
- Fenn KM, Evans SB, McCorkle R. et al. Impact of financial burden of cancer on survivors' quality of life. J Oncol Pract 2014; 10 (05) 332-338
- Dusetzina SB, Winn AN, Abel GA, Huskamp HA, Keating NL. Cost sharing and adherence to tyrosine kinase inhibitors for patients with chronic myeloid leukemia. J Clin Oncol 2014; 32 (04) 306-311
- Patel MS, Reed DA, Loertscher L, McDonald FS, Arora VM. Teaching residents to provide cost-conscious care: a national survey of residency program directors. JAMA Intern Med 2014; 174 (03) 470-472
- Mariotto AB, Enewold L, Zhao J, Zeruto CA, Yabroff KR. Medical care costs associated with cancer survivorship in the United States. Cancer Epidemiol Biomarkers Prev 2020; 29 (07) 1304-1312
- Clarke JL, Laskowski RJ, Coons C. et al. Proceedings of the Christiana Care Health System Value Institute Value Symposium. Am J Med Qual 2012; 27 (6, Suppl): 3S-20S
- Welch HG, Black WC. Overdiagnosis in cancer. J Natl Cancer Inst 2010; 102 (09) 605-613
- Lyu H, Xu T, Brotman D. et al. Overtreatment in the United States. PLoS One 2017; 12 (09) e0181970 DOI: 10.1371/journal.pone.0181970.
- Schnipper LE, Smith TJ, Raghavan D. et al. American Society of Clinical Oncology identifies five key opportunities to improve care and reduce costs: the top five list for oncology. J Clin Oncol 2012; 30 (14) 1715-1724
- Prasad V, De Jesús K, Mailankody S. The high price of anticancer drugs: origins, implications, barriers, solutions. Nat Rev Clin Oncol 2017; 14 (06) 381-390
- Santos PMG, Mathis NJ, Lapen K. et al. Assessment of Guideline-Nonconcordant Radiotherapy in Medicare Beneficiaries With Metastatic Cancer Near the End of Life, 2015- 2017. JAMA Health Forum 2022; e214468-e214468
- Woolhandler S, Himmelstein DU. Single-payer reform: the only way to fulfill the president's pledge of more coverage, better benefits, and lower costs. Ann Intern Med 2017; 166 (08) 587-588
- Allan GM, Lexchin J. Physician awareness of diagnostic and nondrug therapeutic costs: a systematic review. Int J Technol Assess Health Care 2008; 24 (02) 158-165
- Feldman LS, Shihab HM, Thiemann D. et al. Impact of providing fee data on laboratory test ordering: a controlled clinical trial. JAMA Intern Med 2013; 173 (10) 903-908
- Institute of Medicine. 2013. Best Care at Lower Cost: The Path to Continuously Learning Health Care in America. Washington, DC: The National Academies Press. https://doi.org/10.17226/13444.
- Hahn C, Kavanagh B, Bhatnagar A. et al. Choosing wisely: the American Society for Radiation Oncology's top 5 list. Pract Radiat Oncol 2014; 4 (06) 349-355
- Carrera PM, Kantarjian HM, Blinder VS. The financial burden and distress of patients with cancer: Understanding and stepping-up action on the financial toxicity of cancer treatment. CA Cancer J Clin 2018; 68 (02) 153-165
- Sachs R. Administration finalizes most-favored nation drug pricing rule at the last minute. Health Aff Blog 2020
- Butcher L. Price transparency. Hosp Health Netw. Jun 2014;88(6):32–7, 1.
- Nair R, Radhakrishnan VS, Mallath MK. Rituximab biosimilars for B-cell lymphomas: a decade of real-world experience from India. Lancet Haematol 2021; 8 (08) e548-e549