Family
Family support networks
Direct
Indirect
Direct
Indirect
Median
$3503
$23,130
$575
$3215
Range
$754–$51,906
$1259–$48,236
$6–$10,315
$58–$29,061
Reference
46
47
It has been suggested that the costs incurred by families of children with cancer may be comparable in publicly funded health-care systems, such as in Canada and in employer-based insurance systems exemplified by the USA; on average, these costs were estimated to amount to a third of after-tax income [48]. For reference, costs amounting to 15 % or more of gross income have been designated “catastrophic” [49, 50], a situation experienced by the majority of families in the Childhood Cancer Cost Study [46] in Canada and in an early study in the USA [49].
As discussed in the previous section, there is an excess burden of cost associated with cancer that occurs in the AYA versus older population, which continues throughout active therapy and beyond [11]. There has been optimism that the ACA would impact favorably on this burden, especially the requirement that parental insurance plans offer coverage to children until they reach the age of 26 years. However, a recent report from the Childhood Cancer Survivor Study (CCSS) [51] indicates that the majority of survivors, especially those who were uninsured, were not familiar with the ACA, and only a minority believed that the ACA would improve their prospects of obtaining quality coverage. There remains an obvious need to help such survivors navigate the ACA and equivalent opportunities in other countries.
27.4 Older Adolescents and Young Adult: The Financially Independent Patient or Survivor
27.4.1 The Young Adult on Therapy
27.4.1.1 Case Vignette
A 23-year-old young man was diagnosed with ALL. With vague symptoms, he avoided going to the doctor because he remained uninsured due to the cost and did not want to be penalized for violating the new ACA insurance mandate. He lived 3 hours from the nearest academic cancer center and 1 hour from the community hospital with adult oncology where he was diagnosed and received initial treatment. Fortunately, he met an oncology social worker who helped him secure health insurance coverage on his mother’s employer-sponsored plan and negotiate receipt of care at the closer facility. However, the patient did not access the several nonprofit oncology resources that she recommended to mitigate out-of pocket costs related to gas, meals, and unreimbursed treatment-related expenses.
He missed multiple appointments because he did not have his own car, and public bus transportation proved unfeasible as it would have taken three times longer and caused nausea, and he was worried about exposure to sick people. His mother worked long hours as a school bus driver during the day and a hotel operator at night. Although she drove him whenever she could, she was worried about losing her job that provided health insurance. Out-of-pocket expenses mounted with minimal prescription coverage.
He was not able to work at his minimum-wage job because it required frequent, heavy lifting incompatible with his performance status. With the help of his oncology social worker, he successfully navigated the complex application procedure for the government Supplemental Security Income (SSI) program. However, even with SSI, he and his mother had difficulty meeting weekly expenses. He missed multiple appointments and had numerous treatment delays, and maintenance therapy was discontinued after only 6 months because his local oncologist felt he was too neutropenic to tolerate it. The patient relapsed 3 months later and was referred to the academic cancer center 3 h away where he underwent re-induction therapy and an allogeneic bone marrow transplant.
Being far from home, he struggled through the transplant period feeling isolated and not engaging in AYA-directed inpatient activities. Transportation challenges and out-of-pocket expenses remained significant in the posttransplant period, leading to missed appointments, missed prescription refills, and battles with graft versus host disease. He wanted his independence back, but was forced to live with his mother and abide by her rules so as to remain on her health-care insurance plan. Although he attempted to use his SSI to move into his own apartment, he was unable to keep up with the lifestyle of his friends and moved back with his mother. To earn back some of his independence, he enrolled in online junior college courses and used money he saved from SSI and part-time jobs to buy his own car.
27.4.1.2 Major Financial Issues
In most countries, government-funded health insurance and work protection programs offer substantial benefits for cancer patients. In the USA, such programs form a relatively complex landscape that is challenging for the AYA patient to understand and navigate (see Table 27.2).
Table 27.2
Selected US legislation addressing financial issues of young adults and adolescents with cancer
Family and Medical Leave Act (FMLA) | Americans with Disabilities Act of 1990 (ADA) | Health Insurance Portability and Accountability Act (HIPAA) | Consolidated Omnibus Budget Reconciliation Act of 1986 (COBRA) | Affordable Care Act (ACA) | |
|---|---|---|---|---|---|
Primary function | • Continuation of employment | • Procurement and retention of employment and benefits (including health insurance) | • Retention of health insurance | • Retention of health insurance | • Expanded access to health insurance via increased coverage, affordability, and options |
Persons covered | • Employee-cancer patients • Employees with spouse, child, or other dependents with cancer | • Cancer patients and survivors • Employees or prospective employees with dependent cancer patient or survivor | • Employees who become cancer patients | • Employee-cancer patients • Dependent children and spouse (regardless of marital status) | • Patients of all ages, notably young adults |
Entities regulated | • Employers with ≥ 50 employees | • Employers with ≥15 employees • State and local governments • Legislative branch of federal government • Employment agencies • Labor unions | • All employers | • Public and private employers with ≥20 employees | • Payer individuals (mandate for health insurance) |
Qualifying conditions | • Serious health conditions rendering employee unable to perform job • Childbirth, adoption, family medical emergencies | • Any disability in qualified individual able to perform essential functions of job • Usually includes cancer whether cured, controlled on treatment, or in remission | • Any prior diagnosis, including cancer | • Any prior diagnosis, including cancer | |
Major benefits | • 12-week unpaid leave during any 12-month period • Employer must continue benefits (including health insurance) during leave • Restoration of employee at the same or equivalent position • Employee must be allowed reduced or intermittent work schedule when necessary | • Prohibits discrimination in hiring, firing, and providing benefits on the basis of disability • Employers may not ask applicants whether they have had cancer—only whether he/she can perform essential job functions • Employees needing extra time or assistance are entitled to “reasonable accommodation” (e.g., adjustment of work hours or duties to accommodate medical appointments or treatment of side effects) | • Allows employees insured for ≥12 months to change jobs without losing coverage, even if previously diagnosed with cancer • Reduces “job lock” (inability to change jobs for fear of losing health insurance) • Group plans may not impose exclusion clauses of > 12 months for preexisting conditions if medical care received for it within previous 6 months • Requires health plans to renew coverage for groups and individuals • Increases tax deduction for health insurance expenses of self-employed persons | • Requires continuation of group medical coverage to employees who would have lost it due to individual circumstances, including a reduction in work hours or termination for any reason except gross misconduct • Coverage must be continued for 18 months and must be equivalent to group plan offered to other employees • Premiums must be paid by employee but cannot exceed group premium by more than 2 % • Secures valuable time to shop for replacement coverage after changing jobs • Extends coverage for employee’s childhood cancer survivor who becomes independent and must find new coverage | • Extends eligibility to remain on parental plan until 26 years of age • Prohibits denial for preexisting conditions • Eliminates underwriting policies (limits cost of premiums for higher-risk conditions) • Expands coverage for preventive services |
References | [52] | [52] |
Health Insurance and Access in the USA
In contrast to economically developed countries that provide citizens with government-funded health insurance, in the USA a long-standing issue for young adults has been a notable gap in coverage caused by “aging out” of government-sponsored programs designed for young children and teens. Many uncovered young adults were employed at jobs offering no group benefit or by small companies exempt from federal regulations to provide an insurance plan. Programs historically aimed at protecting health insurance when changing employers are summarized in Table 27.2. While each of these introduced incremental improvements in coverage for AYA cancer patients, numerous gaps remained.
To address these, the ACA was signed into law in March 2010 [54] and has been implemented in stepwise fashion. Two of the first provisions that benefit AYAs with cancer were allowing young adult dependents to remain on a parent’s private plan until 26 years of age, regardless of student status, and disallowing exclusions based on preexisting medical conditions. More recent was establishment of a health insurance marketplace exchange, a mechanism whereby public plans are offered without employer sponsorship for a pool of patients with income up to 400 % of the federal poverty limit. The intention is to offer affordable premiums and eliminate the practice of medical underwriting where high rates penalize patients with chronic medical conditions. Regulation also eliminates the practice of annual or lifetime payout caps on insurance policies, which often affect cancer patients. The somewhat controversial ACA “mandate” requires individuals to secure some form of health insurance plan or face a financial penalty.
Hospitals that see a disproportionate share of indigent or uninsured patients temporarily received federal aid to cover cost of care for these patients (the so-called ACA “bump”), but federal priorities are now focused on funding the ACA provisions themselves. Despite these improvements, understanding the ACA and other insurance mechanisms remains a significant challenge for patients and providers alike. Thus, the assistance of experienced oncology social workers or financial counselors is invaluable and can be accessed at larger hospital-based programs if unavailable locally.
With variability across states, the majority of adolescent cancer patients in the US are eligible to receive supplemental health care coverage for catastrophic conditions through public health insurance programs including Medicaid, the State Children’s Health Insurance Program (S-CHIP) and state programs funded by federal Title-V block grants. Unfortunately, this coverage usually terminates when patients “age out” at 17 to 21 years of age. Although the ACA provides for AYAs to remain on their parents’ health insurance plans until 26 years of age, this is of no value for patients whose parents do not have a private policy. Some federal income assistance (SSI) is available for young adults with severe disability, but this fails to benefit the majority of AYA survivors who, in fact, are able and desire to work. Expanded Medicaid-based coverage represents an option for lower-income young adults, but presents challenges as federally contracted plans usually determine treatment facility, sometimes forcing patients to change physicians, clinics, or hospitals in the midst of active treatment. Recent data suggest that treatment at an NCI-designated comprehensive cancer center is associated with superior survival in AYAs with central nervous system tumors and adult-type breast, lung, colorectal, gastric, pancreatic, hepatobiliary, and oral cancers [18, 56] and possibly other malignancies [57]. However, these and other studies have also found that barriers to accessing NCI-designated comprehensive cancer centers include insurance, socioeconomic status, and distance to the facility [17, 58].
Despite the continuing complexity of health insurance coverage in the USA, there is evidence that the ACA is beginning to achieve its aims. Before ACA implementation, some states enacted legislation allowing eligible young adults to remain as dependents on their parents’ insurance plans. Although young adult dependent coverage increased, this was offset by declines in employer-sponsored insurance [59]. However, after federal implementation of young adult dependent coverage via the ACA, there were not only a substantial increase in young adults with dependent coverage but also a reduction in the proportion of uninsured [60]. Following the first ACA open enrollment period, the uninsured proportion for 19–34-year-old persons declined from 28 to 18 %. Furthermore, 60 % of newly covered used their coverage to visit a doctor or hospital or to fill a prescription; 62 % of these individuals said that they would not have been able to afford this care previously [61]. In the same period of time, 13.7 million young adults remained on their parents’ plans, nearly 6.6 million of whom would not have been able to do so before passage of the ACA [62].
Reduced Work and Loss of Income
Loss of household income is a crucial issue for young adults on therapy and results primarily from decreased work hours of their own or their spouse. Some patients may be so medically compromised that they may not be able to work at all temporarily. While support infrastructures for this situation differ internationally, options exist in the USA to offset income loss. However, these are inconsistent, vary by state or region, and must be pieced together in patchwork fashion, often requiring a multitude of applications to various agencies or groups. There are US federal and local options, such as SSI for patients medically unable to work. Patients with employee qualified benefits may be able to apply for short- or long-term disability insurance.
Assistance for miscellaneous living expenses including housing and gas is available from nonprofit organizations but may be restricted by diagnosis or age. Social networks such as churches also often make charity funds available to offset lost income by paying for food, housing, or transportation. Support networks (families, community organizations) occasionally hold fundraisers to help with expenses, although this practice appears more common with the families of childhood cancer patients. Finally, several major airlines offer tickets for medically necessary travel issued on frequent flier miles donated by other travelers. Again, the assistance of an experienced and creative oncology social worker can be invaluable for addressing loss of income.
27.4.2 The Young Adult Survivor of Childhood/Adolescent Cancer
27.4.2.1 Case Vignette
A 22-year-old woman underwent her first evaluation in the transitional care clinic for young adult survivors of childhood/adolescent cancer 10 years following completion of therapy for stage 4 nodular sclerosing Hodgkin lymphoma diagnosed at 11 years of age. Her treatment consisted of an intensive, multimodal regimen that included cumulative chemotherapy doses of cyclophosphamide 9.6 gm/m2, procarbazine 5.6 gm/m2, doxorubicin 280 mg/m2, etoposide 4.8 gm/m2, and bleomycin 80 units/m2, as well as external beam irradiation 21 Gy to a mantle field. She was in good health except for having primary hypothyroidism treated with thyroid hormone replacement. Menarche occurred at 14 years old; menses were currently of normal frequency and duration. Her family medical history was noncontributory; she was in a stable, long-term relationship with her boyfriend with plans to have children. She was a college graduate, was employed at a charitable foundation, and had private health insurance. Her physical examination was remarkable only for the presence of obesity. On the basis of her treatment history, she was determined to be a substantial risk for premature menopause. In addition to undergoing other risk-based surveillance for potential late effects that included late-onset cardiomyopathy, pulmonary fibrosis, and secondary malignant neoplasms (principally breast cancer), the patient was referred to the female fertility preservation program for possible oocyte preservation. In that assessment, she was found to have an estradiol, gonadotropin, and anti-Müllerian hormone profile suggestive of diminished ovarian follicle reserve. Given the patient’s strong desire to have children one day, the recommendation was made either to become pregnant by natural means within the next 1–2 years or consider ovarian follicle or embryo harvesting and preservation. In consultation with her boyfriend and with his financial support, she underwent ovarian oocyte stimulation and harvesting wherein 16 oocytes were retrieved, 14 of which were deemed suitable for freezing and successfully processed. At her annual cancer survivorship evaluation 1 year later, the patient eloquently expressed heartfelt gratitude for being able to preserve her fertility options and described how decision-making with her boyfriend and his essential financial support made it affordable, even though it was not fully covered by her private health insurance. They are now paying out of pocket for the annual cryostorage fee and plan to have children through in vitro fertilization in a few years, after she has completed graduate education and they are more financially secure.
27.4.2.2 Major Financial Issues
The major financial challenges facing AYA cancer survivors vary by age and largely resemble those of their healthy peers, but are exacerbated by increased costs resulting from continued medical surveillance or care [11]. In general, younger AYAs face the developmental tasks of completing education, launching careers, obtaining health insurance, and forming committed relationships with partners. Health insurance options, which have recently expanded for AYAs in the USA following passage of the ACA, are summarized in the preceding Sect. (32.4.1.2.1). This section will focus on the issues of unreimbursed medical expenses, underemployment, and other factors contributing to financial insecurity.
Major Unreimbursed Medical Expenses
Like many young adult survivors of childhood/adolescent cancer, the patient in this vignette faces a lifetime of continued medical surveillance for late-onset complications of treatment. For example, international risk-based consensus guidelines recommend regular, long-term cardiac imaging studies to screen for asymptomatic left ventricular dysfunction in childhood cancer survivors who received >250 mg/m2 of anthracycline and mediastinal irradiation [63]. The exact cost to the patient for a single echocardiogram in the USA varies by region and insurance coverage, but is substantial. According to a current consumer information website, for patients covered by health insurance, the out-of-pocket cost is about 10–50 % of the charge. Without health insurance, the cost is estimated to be $1000–$3000 [64].
This vignette also raises the issue of fertility preservation in female cancer survivors, where effective medical options are currently relatively expensive. Young women previously treated with for cancer using high cumulative doses of alkylators are known to be at risk for developing premature menopause [65]. For patients like the young woman in the vignette who are evaluated at a time when they still have ovarian reserve, oocyte retrieval and cryopreservation have been endorsed as an effective, non-research clinical procedure by the American Society of Clinical Oncology [66]. Although the cost for this procedure in the USA varies considerably by region, it is currently estimated to be about $10,000 plus annual cryostorage fees of about $500 [67, 68]. The process of oocyte thawing, in vitro fertilization, and embryo transfer back to the patient represents an additional subsequent cost of about $5000 [67]. Loss of fertility is a significant quality-of-life concern among female cancer survivors [69]. At present, oocyte retrieval/preservation and related procedures are not covered benefits for most health insurance plans. This means that in order for female AYA survivors to preserve their fertility, most must identify other ways of paying for this procedure even with discounted prices offered by some fertility centers. Fortunately for the patient in this vignette, she and her partner were employed and able to pool their financial resources to afford the procedure and storage. However, the current affordability bias in favor of the wealthy is a practical limitation to routine utilization of this form of fertility preservation [69].
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