32.1 introduction. . . . 489 32.2 younger adolescents: the Financially ‘
dependent Patient. . . . 490 . 32 2 1. Case.Example . . . . 490 . 32 2 2. Major.Financial.Issues. . . . 490 32.3 Older adolescent and young adults:
the Financially independent
Patient or Survivor. . . . 491 . 32 3 1. Case.Example:.The.Young.Adult
. . On.Therapy. . . . 492 . 32 3 2.. Major.Financial.Issues. . . . 492 . 32 3 2 1. Health.Insurance. . . . 492
. 32 3 2 2. .Reduced.Work.and.Loss..
of.Income .. .. .. .. .. .. .. .. .. .. .. .. 492 . 32 3 3. .Case.Example:.The.Adolescent..
and.Young.Adults.Survivor..
of.Childhood.Cancer. . . . 493 . 32 3 4. Major.Financial.Issues. . . . 493 . 32 3 4 1. Employment. . . . 493 . 32 3 4 2.. Health.and.Life.Insurance .. . 497
. 32 3 4 3.. .Other.Factors.Threatening.
Financial.Stability:.Education.
and.Marital.Status.. . . . 498 32.4 conclusions.. . . . 499
32.1 introduction
For most healthcare professionals, the financial aspects of clinical practice are considerably less familiar than the care they actually render. At the same time, few cli- nicians in today’s world fail to appreciate that delivery and financing of care are tightly intertwined. An understanding of key economic issues has become essential for successfully providing oncology care.
Which economic issues are most important depends upon the perspective adopted. An economic evalua- tion of healthcare services has been defined as a com- parison of the costs and consequences of relevant treatment alternatives [1]. In this sense, economic evaluations pertain to specific medical conditions and treatments. A truly comprehensive evaluation consid- ers the viewpoints of all stakeholders, including the patients, providers, third-party payers, and society. In that type of evaluation, a determination of the appro- priateness of treatments must ultimately integrate both their effectiveness and their true cost. It has been argued that such analyses should be included routinely as part of randomized clinical trials [1].
This chapter will review some of the key financial issues encountered in the management of adolescent and young adult patients with cancer. In contrast to the economic evaluation just described, the focus of this analysis is a specific patient population rather than a treatment intervention. The perspective taken is that of patients and their healthcare team consisting
Making ends Meet:
Financial issues from
the Perspectives of Patients and their Healthcare team
David.R .Freyer.•.Ronald.D .Barr
contents
of the physician, nurse, social worker, and others. Of necessity, limiting the discussion to this perspective excludes other vital economic issues raised by this age group, such as reimbursement of care providers or the cost-utility of successful treatment of young adults who survive and enter society’s workforce. Neverthe- less, the financial issues raised here do represent genu- ine concerns of patients who strive to overcome the effects of malignant disease, and rely on the knowl- edgeable assistance of their oncology team to suc- ceed.
Relative to financial issues, cancer statistics in the adolescent and young adult population are informa- tive but must be interpreted in a clinical context.
Although the incidence of newly diagnosed invasive cancer is far lower among persons aged 20 to 29 years (approximately 45 per 100,000 persons) than it is in older adults (approximately 730 per 100,000 for adults aged 50 to 59 years) [2], the financial challenges faced by the younger group are disproportionately complex, and for this reason alone are worthy of concern.
Numerically speaking, an even more daunting chal- lenge in the adolescent and young adult population may be posed by young adult survivors of childhood cancer, who outnumber newly diagnosed cancer patients by over four to one (1 in 490 persons versus 1 in 2200 persons, respectively) [2, 3]. This fact requires increased awareness of the similarly complex chal- lenges faced by this growing population.
The financial issues examined in this chapter include employment, health and life insurance, out-of-pocket expenses (the direct, nonmedical cost of obtaining treatment), and selected health-related quality of life (HRQL) issues that may influence them (e.g., educa- tion and marital status). For purposes of this discus- sion, the adolescent and young adult population is divided into two groups, the younger adolescent (less than 18 years old) and the older adolescent and young adult (18 to 29 years old). Younger adolescents are nearly always financially dependent on their parents or guardians, and their financial issues are essentially equivalent to those of younger children. These are mostly associated with active therapy and result in increased family financial burden, largely due to out- of-pocket expenses. In contrast, older adolescent and young adult tend to be financially independent. Their
issues relate to preserving income, paying for medical expenses, providing for dependents, and planning for the future.
32.2 younger adolescents:
the Financially dependent Patient 32.2.1 case example
A 16-year-old boy was diagnosed with localized osteo- sarcoma of the right distal femur. He was a full-time high-school student living with both working parents and his siblings, aged 4 and 7 years, approximately 2 h driving time from the oncology center. Treatment lasted 1 year and consisted of intensive, multiagent chemotherapy that required frequent hospitalization for several days at a time. He was referred to a different center for a complex limb-salvage procedure. At diag- nosis, the patient’s mother, who had worked part-time as an elementary teacher’s aide, quit her job in order to attend to her son at the hospital and home. The father, who was employed as a food store manager and received health insurance benefits covering his family, was permitted to reduce his hours by 20% to help care for the patient’s younger siblings and assist with trans- portation to and from the hospital. During treatment, the patient qualified for supplemental coverage of medical expenses through a government-sponsored program for children with serious chronic illnesses.
The patient is now in active follow-up 2 years off ther- apy and is in continuous first remission. Both parents have returned to their previous levels of work.
32.2.2 Major Financial issues
Adolescents like the one above resemble the younger pediatric patient, as both are financially dependent.
Depending on the particular healthcare system, the
direct costs of medical care for the majority of children
and younger adolescents with cancer are largely paid
for, especially in Canada, the United Kingdom, Europe,
and other countries with national health programs. In
the United States, direct medical costs are mostly cov-
ered by insurance through a parent’s private or (more
commonly) employer-derived group plan, with or
without support from various public supplemental programs. Therefore, the major financial concerns for dependent patients are those that contribute to the
“family economic burden.”
The financial impact of childhood cancer treatment on families has been the subject of surprisingly little study, with only seven publications appearing in the past 25 years [4–10]. While these have originated in diverse societies with a wide variety of healthcare sys- tems (United Kingdom, United States, New Zealand, China, and Canada), the common message is clear: the economic burden can be enormous. For example, even in the Canadian system of universal access and “first dollar coverage,” the average costs to families amount to one-third of after-tax income [9].
Data on these costs are difficult to collect compre- hensively, especially in the early phase of active treat- ment soon after diagnosis. Retrospective attempts can result in substantial underestimates and other meth- odological considerations contribute to systematic underreporting [11]. Even the process of collecting such information on costs imposes an added burden to these families.
Out-of-pocket expenses have been defined as the direct, nonmedical costs of care [12]. These include expenses such as those arising from transportation to and from the treatment center, parking, long-distance telephone calls, extra meals in restaurants, lodgings, childcare for siblings left at home, wigs, copayments for medications covered by insurance, and full pay- ment for those that are not covered. For research and/
or clinical purposes, such expenses can be recorded prospectively in suitably structured diaries, with addi- tional questionnaires capturing other infrequent but substantial expenditures. On the other side of the bal- ance sheet, a record may be kept of reimbursements from insurance companies, social service agencies, and charitable organizations. Notably, these expense reports do not include indirect costs such as lost income, cessation of work not normally performed for remuneration (e.g., housekeeping), and the opportu- nity costs of family labor (the monetary value of time spent caring for the patient rather than generating income) [13]. In the United States, insurance premi- ums and consumption of limited benefits represent other indirect costs.
The financial impact on families of adolescents with cancer is particularly burdensome: the period of active therapy is lengthy compared with other illnesses; the patients experience substantial morbidity; the patients are often too young to have developed support mecha- nisms outside the family unit; and their families often have other considerable, fixed expenses during this phase of life [9]. Unfortunately, the financial burden of out-of-pocket expenses is magnified in the setting of poverty. Out-of-pocket expenses (and even copay- ments and insurance premiums in the United States) are fixed and therefore “regressive,” accounting for even larger percentages of lower incomes [12]. In poverty, these effects are increased further by “nonmedical financial pressures,” such as general social disorganiza- tion, lack of education, unstable housing arrangements, family violence, crime, and substance abuse [14].
32.3 Older adolescent and young adult:
the Financially independent Patient or Survivor
Older adolescent and young adult face a number of financial challenges related to their developmental stage. Unlike the younger child, where the combina- tion of responsible adults and existing medical insur- ance programs assure payment for most oncology services, adolescent and young adult patients are largely “on their own.” In the United States, the healthcare financing system for financially indepen- dent patients greater than 21 years old is a patchwork of private, federal, state, and local funding programs.
The application process to gain access to benefits often requires completion of numerous, unfamiliar forms with long waits for processing at a time when patients are dealing with the shock of a new diagno- sis, starting difficult therapy, and feeling physically and emotionally unwell. In the United States, many newly diagnosed young adults are treated in busy, community-based adult oncology office settings where it is uncommon to have social work or finan- cial counseling services available. Finally, the per- sonal and family profiles of these patients can be challenging: careers are not well established;
employer-derived medical benefits are marginal or
simply not available; their children are very young and require considerable care; and often both of the patient’s parents are working – if they are together.
32.3.1 case example: the young adult On therapy
A 28-year-old married woman was diagnosed with breast cancer. She and her husband had a total of six children from prior marriages, in addition to discover- ing during her cancer work-up that she was pregnant with their first child as a couple. The patient had been employed as an office assistant but was unable to con- tinue working following diagnosis, which resulted in loss of her income and her family’s primary health insurance benefits. Initial treatment included mastec- tomy followed by dose-limited chemotherapy for 6 months, during which she received high-risk perina- tal services that culminated in the delivery of a healthy full-term baby. Subsequently, she underwent dose- intensive chemotherapy and external beam irradia- tion, followed by breast reconstruction. During treat- ment, the patient’s husband needed to reduce his work hours substantially to care for the other children and his wife (which he could do with the help of coworkers who donated some of their own earned time-off hours).
His secondary health insurance program was limited in scope. With the assistance of a medical social worker, the family enrolled in various government-supported financial and social support programs, obtained pay- ment deferrals from their telephone and utility compa- nies, and received meals and cash gifts from their church. Additional funds needed for living expenses were raised through donation collection cans set out at banks and stores in her community. The patient is now off therapy and recovering, with the husband back to work full-time.
32.3.2 Major Financial issues 32.3.2.1 Health insurance
The lack of insurance coverage for medical care and/or medications in the United States is a major issue for this age group. This reflects a relatively high rate of uninsured Americans in this age group in general.
According to the United States General Accounting Office, about 30% of Americans aged 19 to 29 years lack health insurance [15]. Many of these are employed at jobs simply offering no group insurance benefit or by small companies not bound by federal laws govern- ing insurance. Because of the costliness of private health insurance, many in this age group try to save money by “playing the odds” of remaining healthy.
Unless they already carry private or group health insurance, patients in the United States must pursue several strategies for assistance. For patients ≥21 years, the major resource is Medicaid-derived programs (“Medicaid” is a catch-all term referring to various state-administered programs that use both state and federal dollars to pay for medical expenses of qualified individuals). Another option is to apply for non- employer-based group insurance soon after the diag- nosis of cancer is made.
Because American private and group health plans vary in scope of coverage, some treatment-related expenses exist whether or not the patient has health insurance. For example, not all insurance programs have benefits for prescription medications. Options for addressing this include enrolling in patient assis- tance programs offered by some pharmaceutical com- panies; using samples of oral supportive care medica- tions provided by oncology clinics; and exploring the possibility of obtaining a lower price through interna- tional suppliers.
A major portion of medical expenses comprises hospital bills. Patients can work with the hospital bill- ing department to qualify for indigent care status, in which case some services will be provided at no charge, or to set up an affordable long-term payment plan.
Many of the strategies described above can be over- whelming. The assistance of an experienced medical social worker or financial counselor can be invaluable in accessing them. If such is not available in the medi- cal oncology office where the patient is receiving care, a referral may be made to a social worker associated with a nearby hospital-based cancer program.
32.3.2.2 reduced Work and loss of income
This major issue for young adults on therapy results
chiefly from decreased hours at paid work for the
patient and/or the spouse, who may need to care for the patient or rest of the family. In some cases, the patient may be so medically compromised that tempo- rarily it may not be possible to work at all. Options exist to offset this loss of income, although they are inconsistent and must be used in combination. Some government programs exist to provide supplemental income for patients who are medically unable to work.
Another option is to apply shortly after diagnosis for short- or long-term disability insurance through the patient’s employer. In this case, the patient must already work for an employer who offers disability insurance and must qualify for the plan.
Diagnosis-specific assistance is available for some patients. Funds from organizations supporting patients with certain diagnoses may be granted as available for miscellaneous expenses, such as house payments and other living expenses. For medically necessary travel, several major airlines offer tickets issued on frequent flyer miles donated by other travelers.
Other funds to help offset lost income may be avail- able through a patient’s social network. Churches com- monly make benevolent funds available to help pay for food, housing, or transportation. Finally, if a patient has a supportive family and community, fund-raisers may be held, although this practice seems to be more common for childhood cancer patients.
32.3.3 case example: the Older adolescent and young adult Survivor
of childhood cancer
A 24 year old male underwent long-term follow-up clinic evaluation that was initiated by the patient for help with health insurance. Seven years had passed since his last visit. He had been diagnosed at age 15 years with a localized Ewing sarcoma of his right proximal radius. He received standard treatment con- sisting of multiagent chemotherapy for the disease, as well as resection of the proximal radius for local con- trol. The patient sustained significant anatomical and functional disability affecting his right fingers, hand, and wrist. He was right-handed. The function was improved somewhat after fusion of the radius and ulna and tendon transfer procedure completed at age 17 years. In his period of being lost to follow-up, he was
in prison for 3 years, during which he earned his high school equivalency diploma. However, he had recently lost his job, apartment, and car, and was now living with his mother. He was working for a construction crew, but with his anatomically fixed wrist and limited finger extension, he could only hold the “stop-and-go”
traffic sign at the job site. He could not swing a hammer but felt he could operate power tools if given the chance.
He had no job-related benefits. He had recently seen a psychiatrist for chronic anxiety and depression.
32.3.4 Major Financial issues
The financial problems encountered by the young adult survivor of childhood cancer seem to be influ- enced by the age of the survivor. According to Hays [16], survivors older than approximately 30 years have relatively few problems and tend to resemble control groups, except for obtaining life insurance. In contrast, survivors younger than 30 years exhibit more prob- lems and variance from control groups. The reasons for this may relate to life tasks of the different groups.
In almost all respects, the younger adult is less estab- lished and still in the process of completing an educa- tion, settling on a vocation and redefining primary relationships. Thus, representative problems cluster around the interactions of employment, health insur- ance, and educational level.
32.3.4.1 employment
As recently summarized by the Institute of Medicine in the United States, prior to recent protective legisla- tion about 10 to 25% of childhood cancer survivors experienced discrimination or difficulties in employ- ment as adults [17]. In accounting for this, some of the concerns voiced by employers relating to childhood cancer survivors have been possible increased costs due to insurance expenses and lost productivity, as well as negative psychological impact on other employ- ees [17]. Other issues may include out-of-date person- nel policies and uninformed managers, difficulty interpreting existing legislative requirements, and mis- conceptions about a survivor’s ability to work.
Currently, the employment picture for this group is
mixed, perhaps improving, but difficult to assess due
to changes in government protection and workplace attitudes that may be reflected in only the most recent studies. As summarized by Langeveld and colleagues [18] in a review of 30 empirical studies meeting strin- gent methodological criteria, some studies have detected no significant difference in the rates or types of employment of survivors compared with controls.
However, others have detected a difference. Zeltzer and colleagues found that, compared with siblings, adult survivors of acute lymphoblastic leukemia (ALL) who did not complete higher education had higher unemployment rates or worked less than half-time [19]. Green and colleagues found that female survivors
were unemployed at a rate higher than the national average [20]. A Dutch study found a significantly lower employment rate for both male and female survivors compared with population controls (approximately 53% vs 75%) [21].
Employment discrimination refers to unfair hiring practices or treatment in the workplace due to atti- tudes concerning a person’s ability to work. As sum- marized by Langeveld [18], some studies have found that, as self-reported, approximately 10–30% of survi- vors experienced job discrimination. A survey con- ducted by the United States National Center for Health Statistics found that 23.6% of adult cancer survivors
table 32.1 Selected.United.States.legislation.addressing.financial.issues.of.young.adults.and.adolescents.with.cancerFamily 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) Primary.
function •. Continuation.of.
employment •. Procurement.and.
retention.of.employ- ment.and.benefits.
(including.health.
insurance)
•. Retention.of.health.
insurance •. Retention.of.health.
insurance
Persons.
covered •. Employee-cancer.
patients
•. Employees.with.
spouse,.child,.or.other.
dependent.with.
cancer
•. Cancer.patients.and.
survivors
•. Employees.or.
prospective.employ- ees.with.dependent.
cancer.patient.or.
survivor
•. Employees.who.
become.cancer.
patients
•. Employee-cancer.
patients
•. Dependent.children.
and.spouse.(regard- less.of.marital.status)
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
Qualifying.
conditions •. Serious.health.
conditions.rendering.
employee.unable.to.
perform.job
•. Childbirth,.adoption,.
family.medical.
emergencies
•. Any.disability.in.
qualified.individual.
able.to.perform.essen- tial.functions.of.job
•. Usually.includes.
cancer.whether.cured,.
controlled.on.
treatment,.or.in.
remission
•. Any.prior.diagnosis,.
including.cancer •. Any.prior.diagnosis,.
including.cancer
who were less than 35 years at diagnosis had experi- enced a variety of cancer-related employment prob- lems [22]. Interestingly, the problem of unfair bias seems to be of greater magnitude for those seeking to enter the military, where discrimination was felt to affect 30–80% of survivors [18]. Among Israeli survivors, Dolgin and colleagues found that 46%
reported job discrimination and 55% had difficulty gaining entry into the military [23]. Once hired,
income levels of survivors, as summarized by Lan- geveld [18], seem to be comparable with controls in most studies.
Employment of survivors may be influenced by the type of cancer and the treatment administered.
While Nicholson and coworkers detected no differ- ence in employment status for bone tumor survivors compared with siblings [24], Felder-Puig and col- leagues found that bone tumor survivors encountered
Family and Medicalleave act (FMla) americans with disabilities act of 1990 (ada)
Health insurance Portability and accountability act (HiPaa)
consolidated Omnibus Budget reconciliation act of 1986 (cOBra) Major.
benefits •. 12.weeks.unpaid.
leave.during.any.12- month.period
•. Employer.must.
continue.benefits.
(including.health.
insurance).during.
leave
•. Restoration.of.
employee.at.same.or.
equivalent.position
•. Employee.must.be.
allowed.reduced.or.
intermittent.work.
schedule.when.
necessary
•. Prohibits.discrimina- tion.in.hiring,.firing.
and.providing.
benefits.on.basis.of.
disability
•. Employers.may.not.
ask.applicants.
whether.they.have.
had.cancer.–.only.
whether.s/he.can.
perform.essential.job.
functions
•. Employees.needing.
extra.time.or.assis- tance.are.entitled.to.
“reasonable.accom- modation”.(e g ,.
adjustment.of.work.
hours.or.duties.to.
accommodate.
medical.appoint- ments.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.pre- existing.conditions.if.
medical.care.received.
for.it.within.previous.
6.months
•. Requires.health.plans.
to.renew.coverage.for.
groups.and.individu-
•. Increases.tax.deduc-als tion.for.health.
insurance.expenses.of.
self-employed.
persons
•. Requires.continuation.
of.group.medical.
coverage.to.employ- ees.who.would.have.
lost.it.due.to.indi- vidual.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.replace- ment.coverage.after.
changing.jobs
•. Extends.coverage.for.
employee’s.childhood.
cancer.survivor.who.
becomes.indepen- dent.and.must.find.
new.coverage Refer-
ences [17] [17,.29–31] [17,.30] [17,.30,.31]
table 32.1 (continued)
more difficulty with changing jobs and job orienta- tion [25]. Neither study found a difference in income levels for survivors. Novakovic and coworkers found that significantly fewer survivors of Ewing sarcoma than sibling controls were employed full-time [26].
In these studies, survivor cohorts included both patients with upper or lower extremity tumors, but it is not reported whether the site correlated with any employment differences. A more recent report by Nagarajan and colleagues for the Childhood Cancer Survivor Study (CCSS) [27] found that of 694 survi- vors of lower extremity bone tumors, 97% had ever been employed and 83% had worked during the pre- vious year. Work was associated with a higher educa- tional level, and amputation predicted for lower edu- cation and employment, as well as more insurance problems. For both male and female survivors of ALL, Pui and colleagues report that unemployment was higher than national averages (35% versus 5.2%
for females; 15.1% versus 5.4% for males) [28].
Patients with central nervous system (CNS) tumors have been identified as having major challenges in education and employment [16]. In a recent Dutch study, employment status was not reported separately for CNS tumor survivors, although this subset was noted to have greater difficulties in other HRQL domains [21]. In the same study, low-dose cranial irradiation was associated with an eight-fold risk of lower educational level.
Military service appears to be a problematic area of employment for survivors. In a study of Dutch sur- vivors, Langeveld found that 55% of males were denied entry compared with 27% of the general pop- ulation [21]. In Israel, only 49% of survivors served compared with 71% of controls [23]. For entering the United States military, Weiner and colleagues report that medical waivers can be obtained, and that the general rule for entry is that patients must be without evidence of disease and at least 5 years off therapy (2 years for Wilms’ and testicular germ-cell tumors) [29].
Several strategies and tools exist to assist adolescent and young adult survivors with employment. In gen- eral, treatment centers should routinely provide survi- vors with information concerning their legal rights and advice on obtaining employment, taking into con-
sideration their specific physical or cognitive chal- lenges.
As summarized in Table 32.1, several federal and state laws in the United States work to protect employ- ment and related rights of survivors. The most signifi- cant is the Americans with Disability Act (ADA) of 1990, which prohibits covered employers from dis- criminating on the basis of disability (including cancer) in hiring, firing, and providing benefits [17, 29–31].
Most states in the United States have similar laws, with a few, including California and Vermont, expressly prohibiting discrimination against cancer survivors [17].
Because adolescent and young adult survivors were
diagnosed with cancer before their careers were estab-
lished, specially tailored programs are required for
assisting them with employment. These should be ori-
ented toward completion of education and vocational
training rather than rehabilitation, reentry, and retrain-
ing, as for older adults [12]. In some instances, pro-
grams are available to assist in vocational training and
placement, requiring a physician’s assessment of physi-
cal capabilities. Disabilities generally represent conse-
quences of treatments that were necessary to save the
patient’s life. As such, the oncology team should
endeavor to correct or otherwise manage key disabili-
ties in order to maximize function. Because these are
often complicated and require the involvement of
other surgical or rehabilitation specialists over time,
the issue should be anticipated and undertaken early
enough to benefit the survivor seeking to enter the
workforce. In addressing employment issues, oncol-
ogy teams should utilize the expertise of the medical
social worker, whose knowledge will be most current
in the complex and changing world of survivor employ-
ment opportunities and rights [14]. In the years of fol-
low-up leading to young adulthood, adolescent survi-
vors should be counseled to think ahead, stay in school,
obtain their diplomas, and seek stable living arrange-
ments, as these other HRQL domains seem to influ-
ence employment (as discussed further below). In
responding to employment problems, Hoffman has
pointed out that lawsuits are not the only or optimal
approach [30]. Rather, preemptive strategies for survi-
vors should include: (1) keeping their cancer history
private unless it directly affects their job qualifications;
(2) asking about benefits packages only after receiving a written job offer; and (3) stressing their current abil- ity to do the job in question. If necessary, other infor- mal and formal responses to perceived discrimination can be pursued before resorting to expensive and time- consuming litigation [30].
32.3.4.2 Health and life insurance
For multiple reasons, the adolescent and young adult population is generally vulnerable to health insurance problems [17]. In the United States, which does not have a nationalized system of healthcare, health insur- ance is closely related to employment – the “terrible twins” of survivorship [32]. The “aging out” of child- hood health plans by survivors often results in a loss of coverage or change to that which is less comprehen- sive. According to recent data from the United States General Accounting Office, 30% of Americans aged 18 to 24 years and 23% of those aged 25 to 34 years lack any health insurance whatsoever [15].
These facts may have negative effects on adolescent and young adult cancer survivors trying to obtain long-term follow-up services, which are recommended to continue for life [33]. There is a popular misconcep- tion that people without health insurance still manage to obtain the medical care they need. In fact, these per- sons are much more likely to go without needed care.
According to White, uninsured patients receive fewer preventative services and less regular care for chronic medical conditions [15].
What is the current state of health insurance cover- age for adolescent and young adult survivors of child- hood cancer? Several studies suggest increased difficul- ties obtaining insurance compared with controls, especially for the younger adult. Seven studies of health insurance in this population reviewed by Langeveld [18] suggest that approximately 10 to 25% have diffi- culty obtaining insurance or have exclusion clauses pertaining to a previous diagnosis of cancer, compared with only 1 to 3% of control groups. In a recent study of adolescent and young adult survivors of lower extrem- ity bone tumors by the CCSS, 87% held health insur- ance but 30% had difficulty obtaining it [27]. In that study, successfully obtaining insurance was associated with being a nonamputee, completing college, and
being married. Among survivors of acute lymphoblas- tic leukemia, 28.4% had been denied health insurance and 18.6% were faced with prohibitive premiums.
Among the uninsured, 27.7% were not receiving needed care [28]. This lack of coverage seems to be an Ameri- can phenomenon, as multiple international studies of HRQL describe frequent difficulties in domains such as completing education, finding employment, entering military service, and qualifying for a driver’s license, but not in obtaining health insurance. Presumably, this is because national health insurance programs in many other developed countries eliminate the “coverage gap”
of American young adults.
Similar shortfalls exist for survivors obtaining life insurance. Again, this seems to be more striking for younger than older adults, although this is not always identified by them as a concern until they are in an established career, have dependents, and own prop- erty. Five studies that evaluated life insurance were reviewed by Langeveld [18] and indicate that 24 to 44% of survivors have difficulty obtaining affordable life insurance, compared with approximately 2% of controls. According to the United States Institute of Medicine [17], insurance companies take cancer his- tory into account because life insurance is based on actuarial risk of death, and cancer patients have an increased risk of death at an earlier age. Thus, some life insurance companies will not insure survivors at all, or else charge very high premiums to do so.
In assisting the adolescent and young adult cancer survivor in obtaining or keeping health insurance, the treatment center should begin by routinely providing all survivors with information concerning its impor- tance, how the system works, and how to navigate it successfully. As summarized in Table 32.1, three pieces of legislation in the United States are particularly note- worthy for protecting health insurance for some survi- vors: the ADA [17, 29–31], the Health Insurance Por- tability and Accountability Act [17, 30], and the Consolidated Omnibus Budget Reconciliation Act of 1986 [17, 30, 31].
Monaco and colleagues [31] have provided several
recommendations for assisting adolescent and young
adult survivors with their insurance needs. The overall
goals should be to find an insurer who will provide any
coverage at all to the survivor, either through offering
limited coverage at normal premiums until after the preexisting diagnosis period has expired, or through offering full coverage at a higher rate until the policy- holder is considered to be at no increased risk. Open enrollment periods for certain insurance companies and employers may provide an opportunity for survi- vors to apply. Group insurance plans may also be offered through organizations to which the survivor belongs, such as labor unions, business associations, and religious groups. The most effective strategy, according to the authors [31], is to seek affordable group insurance by securing stable employment with a large company (more than 300 employees). Hoffman has provided several practical suggestions for survivors wishing to shop wisely for health insurance [30]. As with employment, it is critical for treatment centers to assist the patient, especially during the adolescent years of initial follow-up, in anticipating the importance of health insurance and planning accordingly, especially with respect to finding gainful employment.
32.3.4.3 Other Factors threatening Financial Stability: education and Marital Status
Across multiple countries, studies of childhood can- cer survivors have found that a higher level of educa- tional attainment is associated with employment. In the extensive review by Langeveld and coworkers [18], studies suggest that survivors of CNS tumors, especially if they were treated with irradiation, and patients who were given cranial irradiation for ALL, complete higher education less frequently than other patients. The effect is most striking for those who were diagnosed at a young age. In a study of educa- tional attainment by the CCSS group [35], a lower proportion of survivors than siblings completed high school or college, especially among patients treated for CNS tumors. The use of special education services was higher among survivors (23%) than siblings (8%), which helped offset the educational risk.
Among lower-extremity bone tumor survivors, the CCSS group discovered that 93% had graduated from high school (a lower rate than the reference group) and 50% had graduated from college [27]. In that study, it was also noted that patients less than 12 years
old at diagnosis and those who had not undergone amputation were somewhat more likely to graduate from college. In addition, education was a positive predictor for both employment and having health insurance [27]. In a Dutch population, survivors who were female or had a history of either CNS tumor or cranial irradiation for ALL were significantly less likely to complete high school or pursue a graduate degree [21]. In a study in the United Kingdom, 25%
of survivors compared with 48% of siblings received higher education, although both levels were higher than the national average of 17.3% [36]. In an Israeli study population, no difference was noted between survivors and siblings for high school graduation or attainment of a university degree [23].
Marital status might also be viewed as an indirect indicator of financial risk because unmarried survi- vors do not enjoy the security of a spouse’s income or benefits providing medical and life insurance. The two largest studies of marriage involving more than 12,000 childhood cancer survivors combined found that, compared with controls, there was a lower prev- alence of marriage among survivors in general [37, 38], especially male survivors of CNS tumors [37, 38], and women and whites [37]. In the CCSS, 66% of survivors of lower extremity bone tumors were mar- ried or living as married; within that study popula- tion, no difference was found for amputees [27].
Among survivors of ALL, the only significant differ- ence in marriage rates was noted for the subset of females who had received cranial irradiation (35.2%) compared with the matched general population (48.8%) [28]. In The Netherlands, survivors of cancer compared with a reference group were significantly less likely to be married, especially among males and those with a history of CNS tumor and/or cranial irradiation [21]. As reviewed by Langeveld, most other studies found similar results [18].
The frequency of divorce reported for childhood
cancer survivors varies in different studies [reviewed
in 18]. The two largest studies of marital status
mentioned above [37, 38] found that divorced
survivors had similar characteristics to those who
never married. Although the CCSS group [37] found
that the overall proportion of survivors who were
divorced or separated was lower than that of
the United States population, males (especially in the 20- to 24-year-old group) had a higher rate. The authors also state that survivors who had a CNS tumor divorced or separated at a rate higher than those with other diagnoses and matched reference populations. Byrne and colleagues [38] found that male survivors of CNS tumors had a substantially higher divorce rate than controls, especially if diag- nosed at a young age.
32.4 conclusions
Attention to financial issues constitutes an important part of caring for the whole adolescent or young adult with cancer. For the younger adolescent who is finan- cially dependent, the major financial challenge is the family economic burden, which is created by substan- tial out-of-pocket expenses and reduced income of parents. For the older adolescent or young adult who is financially independent and on treatment, the major financial challenges involve payment for care (particu- larly in societies without national health programs), loss of income while unable to work, and out-of-pocket expenses. For the financially independent young adult survivor of cancer in childhood or adolescence, seri- ous financial challenges may arise due to difficulties obtaining employment and health and life insurance, especially in certain clinical subgroups such as those who had CNS tumors and/or cranial irradiation.
Assisting patients at risk begins with an awareness of the substantial financial problems facing these popula- tions and continues with creative efforts to meet their needs using available resources most suitable for each situation. Especially for survivors, strategies for com- pleting education and finding stable employment should be emphasized and implemented as early as possible.
references
1. Barr RD, Feeny D, Furlong W (2004) Economic evalua- tion of childhood cancer care. Eur J Cancer 40:1335–
2. Ries LAG, Eisner MP, Kosary CL, et al (eds) (2004) 1345 SEER Cancer Statistics Review, 1975–2000, National
Cancer Institute. Bethesda, MD. Available at: http://
seer. cancer. gov/csr/1975_2000/results_single/sect_
02_table. 02. pdf. Accessed February 1, 2004
3. National Cancer Policy Board; Institute of Medicine and National Research Council. Weiner SL, Simone JV, Hewitt M (eds) (2003) Childhood Cancer Survivorship:
Improving Care and Quality of Life. National Acade- mies Press, Washington DC, p 34
4. Lansky SB, Chairs NU, Clark GM, et al (1979) Child- hood cancer: non-medical costs of the illness. Cancer 43:403–408
5. Bodkin CM, Pigott TJ, Mann JR (1982) Financial bur- den of childhood cancer. BMJ 284:1542–1544
6. Pentol A (1983) Cost bearing burdens. Health Soc Serv J 93:1088–1089
7. Bloom BS, Knorr RS, Evans AE (1985) The costs of car- ing for children with cancer. JAMA 253:2393–2397 8. Martinson IM, Su-Xiao Y, Liang YJ (1993) The impact
of childhood cancer on 50 Chinese families. J Pediatr Oncol Nurs 10:13–18
9. Barr RD, Furlong W, Horsman JR, et al (1996) The monetary costs of childhood cancer to the families of patients. Int J Oncol 8:933–940
10. Dockerty JD, Skegg DCG, Williams SM (2003) Eco- nomic effects of childhood cancer on families. J Paedi- atr Child Health 39:254–258
11. Jacobs P, Fassbender K (1998) The measurement of indirect costs in the health economics evaluation litera- ture. Int J Technol Assess Health Care 14:799–808 12. Parsons SK (2002) Financial issues in pediatric cancer.
In: Pizzo PA, Poplack DG (eds) Principles and Practice of Pediatric Oncology, 4th edn. Lippincott Williams and Wilkins, Philadelphia, pp 1495–1510
13. Stommel M, Given CS, Given BA (1993) The cost of cancer home care to families. Cancer 71:1867–1874 14. Bonnem S, Ross J (1997) Financial issues in pediatric
cancer. In: Pizzo PA, Poplack DG (eds) Principles and Practice of Pediatric Oncology, 3rd edn. Lippincott–
Raven, Philadelphia, pp 1357–1365
15. White PH (2002) Access to health care: health insur- ance considerations for young adults with special health care needs/disabilities. Pediatrics 110:1328–1335 16. Hays DM (1993) Adult survivors of childhood cancer:
employment and insurance issues in different age groups. Cancer 71:3306–3309
17. National Cancer Policy Board; Institute of Medicine and National Research Council. Weiner SL, Simone JV, Hewitt M (eds) (2003) Childhood Cancer Survivorship:
Improving Care and Quality of Life. National Acade- mies Press, Washington DC, pp 140–163
18. Langeveld NE, Stam H, Grootenhuis MA, Last BF (2002) Quality of life in young adult survivors of child- hood cancer. Support Care Cancer 10:579–600 19. Zeltzer LK, Chen E, Weiss R, Guo MD, et al (1997)
Comparison of psychologic outcome in adult survivors
of childhood acute lymphoblastic leukemia versus sib- ling controls: a cooperative Children’s Cancer Group and National Institutes of Health study. J Clin Oncol 15:547–556
20. Green DM, Zevon MA, Hall B (1991) Achievement of life goals by adult survivors of modern treatment for childhood cancer. Cancer 67:206–213
21. Langeveld NE, Ubbink MC, Last BF, et al (2003) Educa- tional achievement, employment and living situation in long-term young adult survivors of childhood cancer in the Netherlands. Psychooncology 12:213–225
22. Hewitt M, Breen N, Devesa S (1999) Cancer prevalence and survivorship issues: analyses of the 1992 National Health Interview Survey. J Natl Cancer Inst 91:1480–
23. Dolgin MJ, Somer E, Buchvald E, Zaizov R (1999) 1486 Quality of life in adult survivors of childhood cancer.
Soc Work Health Care 28:31–43
24. Nicholson HS, Mulvihill JJ, Byrne J (1992) Late effects of therapy in adult survivors of osteosarcoma and Ewing sarcoma. Med Ped Oncol 20:6–12
25. Felder-Puig R, Formann A, Mildner A, et al (1998) Quality of life and psychosocial adjustment of young patients after treatment of bone cancer. Cancer 83:69–
26. Novakovic B, Fears TR, Horowitz ME, et al (1997) Late 75 effects of therapy in survivors of Ewing sarcoma family tumors. J Pediatr Hematol/Oncol 19:220–225
27. Nagarajan R, Neglia JP, Clohisy DR, et al (2003) Educa- tion, employment, insurance, and marital status among 694 survivors of pediatric lower extremity bone tumors:
a report from the Childhood Cancer Survivor Study.
Cancer 97:2554–2564
28. Pui C-H, Cheng C, Leung W, et al (2003) Extended fol- low-up of long-term survivors of childhood acute lym- phoblastic leukemia. N Engl J Med 349:640–649
29. Weiner SL, McCabe MS, Smith GP, et al (2002) Pediat- ric cancer: advocacy, insurance, education, and employment. In: Pizzo PA, Poplack DG (eds) Princi- ples and Practice of Pediatric Oncology, 4th edn. Lip- pincott Williams and Wilkins, Philadelphia, pp 1511–
30. Hoffman B (1999) Cancer survivors’ employment and 1526 insurance rights: a primer for oncologists. Oncology 13:841–852
31. Monaco GP, Smith G, Fiduccia D (1997) Pediatric can- cer: advocacy, legal, insurance, and employment issues.
In: Pizzo PA, Poplack DG (eds) Principles and Practice of Pediatric Oncology, 3rd edn. Lippincott-Raven, Phil- adelphia, pp 1367–1381
32. Moore DM (1999) The Hoffman article reviewed.
Oncology 13:846–849
33. Lampkin BC (1993) Introduction and executive sum- mary. Cancer 71:3199–3201
34. Fishman E (2001) Aging out of coverage: young adults with special health care needs. Health Affairs 20:254–
35. Mittby PA, Robison LL, Whitton JA, et al (2003) Utili-266 zation of special education services and educational attainment among long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Cancer 97:1115–1126
36. Evans SE, Radford R (1995) Current lifestyle of young adults treated for cancer in childhood. Arch Dis Child 72:423–426
37. Rauck AM, Green DM, Yasui Y, et al (1999) Marriage in the survivors of childhood cancer: a preliminary description from the Childhood Cancer Survivor Study.
Med Ped Oncol 33:60–63
38. Byrne J, Fears TR, Steinhorn SC, et al (1989) Marriage and divorce after childhood and adolescent cancer.
JAMA 262:2693–2699
