Advocate, Volunteer, and Donate.

Why I volunteer, advocate and donate to the Leukemia & Lymphoma Society. Two of my books will donate net profits to LLS. See: https://tinyurl.com/5brk4846

“…The Leukemia & Lymphoma Society’s (LLS) mission is to cure leukemia, lymphoma, Hodgkin’s disease, and myeloma, and improve the quality of life for patients and their families through research, policy advocacy, education, and support. We are the largest nonprofit funder of blood cancer research, investing nearly $1.3 billion in the most pioneering science worldwide since 1949. We drive policy and regulatory changes that accelerate the development of new blood cancer treatments and break down barriers to care…” See the following for a number of financial support opportunities : https://tinyurl.com/4546ebvc

This funding opportunity is part of LLS’s new Equity in Access Research Program, which is designed to generate evidence that will guide changes in healthcare policy and practice to ensure that all blood cancer patients and survivors achieve access to the cancer care and services they need throughout their lives. This program is based on the concept of health equity as “the principle underlying a commitment to reduce—and ultimately, eliminate—disparities in health and its determinants, including social determinants.” We define a health disparity as “a particular type of health difference that is closely linked with social or economic disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater social or economic obstacles to health based on their racial or ethnic group, religion, socioeconomic status, gender, mental health, cognitive, sensory, or physical disability, sexual orientation, geographic location, or other characteristics historically linked to discrimination or exclusion.”² Although substantial evidence links economic and social disadvantage to avoidable illness, poorer health-related quality of life, and greater untimely death, it is possible to mitigate the impact of economic and social disadvantage on health through social policy reform.¹ 

The COVID-19 pandemic as well as concomitant social and political events have highlighted, in ways not seen in recent memory, public awareness of and discourse about striking disparities in both access to healthcare and health outcomes. LLS is committed not only to contributing to this discourse, but also to shaping it in a meaningful way for patients with and survivors of a blood cancer. The Equity in Access Research Program seeks to improve access to care across the cancer care continuum, beginning with diagnosis, encompassing treatment (which may include a clinical trial), and continuing through post-treatment survivorship, including supportive and palliative care during all phases of the continuum. For some patients, the continuum also includes end-of-life care. The LLS Equity in Access Research Program aims to deepen understanding of access barriers and identify modifiable factors that contribute to these barriers, factors that can be addressed through policy reform and changes in healthcare practice.

Background 

Although we continue to see significant advances in treatment for blood cancer, not all patients and survivors have equal access to newer and more effective treatments. Some groups—including, but not limited to, racial and ethnic minority groups, individuals with low-income, and rural residents—face substantial social, economic, and environmental disadvantages that hinder or prevent access to the treatment and care they need. Further, differences in access to care can become more pronounced as new, more effective treatments, such as immunotherapy, become available.⁵ 

Although enactment of the Patient Protection and Affordable Care Act (ACA) reduced rates of uninsurance, disparities in coverage persist, with coverage lagging among individuals who are Black, Hispanic, Asian, American Indian or Alaska Native, and Native Hawaiian and other Pacific Islander. Additionally, eligibility for safety net programs like Medicaid varies from state to state, and this impacts access to care, especially for patients with very low income.⁷ The implications of barriers to care are significant, as research shows that increased access to cancer care results in higher rates of survival, as well as better quality of life and health outcomes.⁴ 

High Cost of Cancer Care

The high cost of cancer care, both to the healthcare system and individual patients, is one of the greatest barriers to equitable access to care, yet it is modifiable through reforms in, among other areas, health insurance. Blood cancers are especially expensive to treat, and the cost of new orally administered anti-cancer drugs continues to rise. Per-patient treatment costs, for patients who are commercially insured, range from an average of $200,000 for chronic leukemia to more than $800,000 for acute leukemia over the 3 years following diagnosis. Out-of-pocket costs for actively treated patients for years 1 and 2 following diagnosis average about $17,000 and $8,300, respectively, for Medicare fee-for-service patients and about $6,900 and $2,600, respectively, for Medicare Advantage patients with Part D coverage.Moreover, for commercially insured patients with a blood cancer, average monthly healthcare costs never return to pre-diagnosis spending levels, demonstrating a persistent cost burden both to the system and the patient years after a blood cancer diagnosis.

Inadequacies of Health Insurance Plans

Health insurance is intended to safeguard patients from significant financial burden and loss; however, many health plans do not provide that level of security. Even with the reforms in the ACA, insurers are still permitted to impose high out-of-pocket costs on consumers, which lead to significant financial burden for cancer patients and survivors. Moreover, despite the ACA’s coverage expansions, many survivors remain uninsured or underinsured. For example, health plans are increasingly shifting cost burdens to patients through high deductibles and cost-sharing requirements, which can translate into large out-of-pocket costs, especially for patients with expensive-to-treat cancer diagnoses. 

In today’s insurance market patients are also witnessing the proliferation of certain types of coverage—such as short-term, limited duration (STLD) plans—that are not required to comply with the patient protections in the ACA and, consequently, expose them to more severe financial burden. For example, a patient newly diagnosed with lymphoma while covered by an STLD plan could pay as much as $45,800 in out-of-pocket expenses (including premiums and cost-sharing) during the 6 months following diagnosis, whereas the same patient, if enrolled in an ACA-compliant plan, could pay $6,300, on average, in out-of-pocket expenses over the same period. 

An investigation by the U.S. House Committee on Energy & Commerce found that during the 2019 plan year, an estimated 3 million consumers had enrolled in STLD plans sold by nine insurers, suggesting that increasing numbers of patients and consumers are relying on these insurance-like products. Significantly, most individuals enrolled in these products are assumed, based on data compiled by the Centers for Medicare & Medicaid Services, to have been previously covered by ACA-compliant plans through the healthcare.gov marketplace. Due to the unregulated nature of STLD and other non-ACA-compliant plans, a full picture of their impact is unknown. Further research is needed to understand the impact of these plans on survivors whose medical history puts them at increased risk of harm, given the discriminatory practices that underpin STLD plans and similar insurance-like products.

Financial Burden and Patient Impact

The cancer-related financial burden that results from the high cost of care, combined with inadequate insurance coverage, is sometimes referred to as “financial toxicity” of cancer. Financial toxicity is associated with patients forgoing or delaying medical care, lower enrollment into clinical trials, decreased medication adherence, lower quality of life, psychological distress, and worries about recurrence. Financial hardship often continues into survivorship, negatively impacting long-term access to care, as well as health and quality of life outcomes. Financial hardship disproportionately affects young adult survivors, survivors who are racial and ethnic minorities, and survivors in rural areas…”