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Addressing Cancer Health Disparities: The No One Left Alone Initiative

Web Exclusives - Disparities in Cancer Care
Rohan Nathwani; Arva Patel; Warner Kornberg; Asutosh Gor, MD; Sashi Naidu, MD; Viral Rabara, MD; Niyati Nathwani, MD; Kashyap Patel, MD
Carolina Blood and Cancer Care Associates, Rock Hill, SC
Addressing Cancer Health Disparities: The No One Left Alone Initiative was originally published by Oncology Practice Management.

Despite ranking among the top 6 wealthiest economies in the world per capita, the United States still has sizable health disparities among its citizens, which are rooted in social, economic, and environmental factors. Place of birth is more strongly associated with life expectancy than race or genetics. There is a 15-year difference in life expectancy between the most advantaged and disadvantaged citizens in the United States. This difference correlates with geographic characteristics and health behaviors that are influenced by historical and social factors.1,2

In patients aged 25 to 79 years, disparities in cancer care led to almost 34% of the deaths and to additional spending of $230 billion; addressing disparities in cancer care would result in additional indirect savings of up to $1 trillion over 3 years.3 A comprehensive approach is needed to include support from all segments of the health ecosystem. Our team at Carolina Blood and Cancer Care Associates (CBCCA) studied cancer health disparities to identify priorities and suggest a solution.

The factors contributing to cancer health disparities are complex and multifactorial (Figure 1) and often exist before a patient’s cancer journey begins. They include the inability to access healthcare due to socioeconomic factors, such as a lack of insurance, underinsurance, and payer-related factors; a lack of access to cancer screening, precision medicine testing, and other cutting-edge treatment options; economic factors during care, such as burdensome out-of-pocket (OOP) costs; and a lack of access to clinical trials. These issues are compounded by a distrust of the clinical trial system by certain patient populations that have historically suffered from health disparities. Many of the US population groups that experience cancer health disparities are also among those hardest hit by the ongoing COVID-19 pandemic.

Factors Leading to Cancer Health Disparities

For uninsured or underinsured Americans, the financial toxicity of cancer treatment is shockingly easy to encounter. Consider these facts: today 19%, or 6 million, of Medicare fee-for-service beneficiaries do not have supplemental coverage. They may incur annual OOP costs of approximately $2500 to $15,000—up to approximately 58% of the median per capita income of Medicare beneficiaries—that can lead to financial toxicity. Increasing financial toxicity can very easily result in either noncompliance or abandonment of treatment.4-12

Because of high costs, many people with cancer and those who have survived cancer experience financial hardships, including problems paying bills, depletion of savings, delaying or skipping needed medical care, and potential bankruptcy. These costs and hardships do not affect all cancer patients equally—most of the patients who face financial toxicities are already somewhat marginalized and underserved and encounter socioeconomic disparities. Cancer patients are more likely to experience financial hardship if they are younger, less educated, lower income, or people of color. Among people with cancer who reported facing at least 1 financial hardship, a greater percentage of those aged 18 to 54 years faced hardship compared with those aged 55 to 64, 58.9% versus 48.5%, respectively; almost 70% of those who did not graduate from high school faced difficulties compared with 52% of high school graduates and those with some college education; non-Hispanic Whites experienced fewer hardships than people of other races and ethnicities, 63.5% versus 50.9%, respectively.13

Against this backdrop, cancer health disparities are an enormous and complex public health challenge in the United States. To truly address cancer health disparities, a comprehensive approach is needed to bring a groundswell of resources together. This must include support for public policies aimed at a better understanding of the issues by all segments of the health ecosystem, including but not limited to state, federal, and local funding resources; local healthcare providers and health systems, including community planning and development sectors; pharmaceutical and diagnostic companies; and the science and research communities.

Some of the issues leading to cancer health disparities that need to be addressed relatively quickly include

  • Access to care—limited by socioeconomic factors, such as lack of insurance, payer-related factors, underinsured status, high and burdensome OOP costs
  • Access to cancer screening services
  • Access to precision medicine testing

Methods and Process

Our team at CBCCA took the initiative to study cancer health disparities, identify priorities, and then prepare a road map to implement the solution. After spending >3000 hours reading (>300 publications), we learned that lack of access to care due to financial constraints has the highest adverse effect among all factors leading to cancer health disparities. We decided to research this and other factors to find solutions. We created the No One Left Alone (NOLA) program in our service area in rural South Carolina.

To understand the complexity of factors leading to severe financial constraints and the effect of social determinants of health (SDOH), we developed a unique NOLA intake form (Appendix I, available at www.ahdbonline.com). Upon collection of data, we assigned an employee to identify and address gaps in care and create action plans that could be measured and quantified. We dedicated a number of employees and teams to address these issues in 2021.

Step I: Procedures at the Initial Visit for Each New Patient

We determined whether a patient is insured or uninsured. For insured patients, our designated counselor reviewed their benefits with them and identified unmet needs. We also collected the following information to facilitate additional support in addition to the OOP costs.

Insurance

Abbreviations: ACA, Affordable Care Act; DSS, Department of Social Services; LIS, Low Income Subsidy; NOLA, No One Left Alone.

In addition, at the intake, we provided information on available support. Our local utility waives payments if the patient has advanced cancer with a life expectancy of <1 year; fees are waived for a local gym membership; gas cards are available; and other support may be provided through a local county 501C3. In fact, we partnered with a local 501C3 organization and created a special fund—subject to eligibility based on federal poverty line, economic criteria, and number of dependents—to assist with monthly premiums, Medicare Part B premium, OOP costs for prescription cancer medicines, and legal fees.

Step II: Operation Plan to Procure Help and Continue Care

For all new cancer patients likely to need active treatment, the CBCCA intake team identified insurance status and took appropriate steps to prepare for all support (see Step I).

Once the treatment regimen has been established, coverage and OOP costs are estimated and resources identified. Next, dedicated financial counselors completed all the required paperwork on behalf of the patients, sometimes for multiple foundations, to ensure that patients have no or minimal OOP expenses.

Data are collected and proactively tracked to ensure that all possible resources were made available. One full-time employee constantly searches foundations and resources. The list of patients awaiting support is matched and access programs are reviewed on a weekly basis.

Results of This Multifaceted Initiative
Economic support from foundations for intravenous drugs

Details of free drugs (infusions)

Assistance for oral prescription benefits; financial assistance for oral drugs

Costs for January through September 2022 were compared with costs for January through September 2023 (Figure 2).

A summary of the benefits of the multifaceted NOLA initiative to enable equitable access to care and improve outcomes, reduce overall costs, and address access to care follows.

  • Total number of patients receiving free drugs: 63; financial value of drugs, $2,034,758.14
  • Total number of patients receiving financial assistance: 110; financial value, including copay cards and foundation support, $196,970
  • Total amount of financial help for oral drugs (2022): $236,604 (9 months); annualized at $314,683
  • Net total amount of financial assistance including oral drugs, intravenous drugs, and free drugs: $2,546,411
  • The total number of patients receiving cancer treatment was 419; essentially nearly 50% of patients needed some type of help for OOP support
  • Not a single patient was turned away for treatment irrespective of their ability to pay
  • We incurred a cost of $250,000 in direct costs for the full-time employee and other logistics. Indirect cost includes $60,000 physician time (Dr Patel), an additional 1000 hours of study time and research, and 200 hours of other staff (including a business office for calculation for the OOP cost for individual beneficiaries depending on the regimen)
  • These results do not include support for oral cancer and oncolytic drugs, as we are in the process of streamlining patient assistance programs for those drugs

Cost to CBCCA

During phase 1 of NOLA, CBCCA incurred direct costs of approximately $350,000 for additional staff hired and program-related resources (part-time pharmacist, 4 pharmacy technicians, 2 financial counselors). Indirect costs incurred were approximately $60,000 in excess physician time, an additional 3000 hours of study and research, and 200 hours of other staff time, including business office time calculating OOP costs for patients based on the treatment they were receiving.

Discussion

During the past 2 decades, we have seen great progress against cancer in the United States. The overall cancer death rate is declining. The immense burden of cancer, however, is not shouldered equally by all segments of the US population. The adverse differences in cancer burden that exist for certain population groups are among the most pressing public health challenges that we face. Racial and ethnic minority populations are among the US population groups that have long experienced cancer health disparities, and striking disparities in cancer incidence and death persist for these groups in the United States.

Our catchment areas and the counties that we serve typically represent the most vulnerable and marginalized populations impacted by the disparities. We therefore decided to start a pilot program intended to serve as a road map that can be shared by multiple other practices. Instead of working in silos, we decided to partner with multiple stakeholder groups, including local nonprofits, congressional offices, the state Department of Health and Human Services Medicaid teams, and others to create a collaborative effort. We developed a plan to include multiple team members and cross-train them to lead a pharmacy operation with multiple pharmacy technicians and support staff including a financial counselor. This plan can minimize the impact of financial toxicities, provide equitable cancer care irrespective of ability to pay, and reduce risk of bankruptcies.

We have implemented other phases of solutions to address inequities by addressing gaps in biomarker testing, increasing clinical trial participation, and increasing germline testing in a guidelines-concordant approach. In addition to testing, we identified and addressed roles of SDOH and gaps in cancer screening.

Conclusion

Based on our learning and data collection, we believe that cancer health disparities will be solved only by local initiatives. Despite the national policy and recommendations for lung cancer screening being in place for >3 decades, little progress has been made in lung cancer screening for eligible patients, with <15% of patients undergoing screening in 2019. Only local initiatives such as NOLA will enable equitable access to care that would improve outcomes, reduce overall costs, and address cancer health disparities.

References

  1. Tikkanen R, Abrams MK. U.S. Health Care from a Global Perspective, 2019: Higher Spending, Worse Outcomes? Commonwealth Fund. January 30, 2020. www.commonwealthfund.org/publications/issue-briefs/2020/jan/us-health-care-global-perspective-2019
  2. Levit L, Balogh E, Nass S, et al, eds. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. The National Academies Press; 2013. Accessed April 26, 2024. www.ncbi.nlm.nih.gov/books/NBK202148/
  3. American Association for Cancer Research. AACR Cancer Disparities Progress Report. Accessed October 2023. https://cancerprogressreport.aacr.org/disparities/
  4. Davidoff AJ, Erten M, Shaffer T, et al. Out-of-pocket health care expenditure burden for Medicare beneficiaries with cancer. Cancer. 2013;119:1257-1265.
  5. Cohen RA, Gindi RM, Kirzinger WK. Financial burden of medical care: early release of estimates from the National Health Interview Survey, January–June 2011. Accessed October 2023. www.cdc.gov/nchs/data/nhis/health_insurance/financial_burden_of_medical_care_032012.pdf
  6. 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;18:381-390.
  7. 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;32:1143-1152.
  8. The Mesothelioma Center. High cost of cancer treatment. Accessed October 2023. www.asbestos.com/featured-stories/high-cost-of-cancer-treatment/
  9. Rimer BK. The imperative of addressing cancer drug costs and value. Accessed October 2023. www.cancer.gov/news-events/cancer-currents-blog/2018/presidents-cancer-panel-drug-prices
  10. Pharmaceutical Commerce. EMD Serono Specialty Digest shows more interest in site of care by payers. May 1, 2018. Accessed October 2023. www.pharmaceuticalcommerce.com/view/emd-serono-specialty-digest-shows-more-interest-in-site-of-care-by-payers
  11. American Cancer Society. The Costs of Cancer 2020. Accessed October 2023. www.fightcancer.org/sites/default/files/National%20Documents/Costs-of-Cancer-2020-10222020.pdf
  12. National Cancer Institute. Annual Report to the Nation Part 2: patient economic burden of cancer care more than $21 billion in the United States in 2019. October 26, 2021. Accessed October 2023. www.cancer.gov/news-events/press-releases/2021/annual-report-nation-part-2-economic-burden
  13. Han X, Zhao J, Zheng Z, et al. Medical financial hardship intensity and financial sacrifice associated with cancer in the United States. Cancer Epidemiol Biomarkers Prev. 2020;29:308-317.
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Last modified: May 15, 2024