The effects of illness are often not limited to only those suffering from disease. For diseases such as dementia, multiple sclerosis, and cancer, the financial and emotional toll to caregivers is large and has been well described. In Alzheimer's dementia, for example, financial costs to caregivers are estimated to exceed $50,000 annually. Caregiver burden is highly common across a wide range of cancers, including non-small cell lung cancer, breast cancer, and others (see here and here, for example). Among women with breast cancer, for instance, nearly 70 percent of employed caregivers report reductions in work and 30 percent report depression at the terminal stage of illness. But what has been largely unaccounted for thus far is the value family members have for the health of their loved ones.
Measuring caregiver burden to calculate the societal cost of disease—or alternatively, the broader value to society of reducing disease burden—is important. However, it is arguably far less important than the direct loss in well being (or "utility," in the language of economics) to families and others who have a loved one afflicted with disease.
Consider, for instance, how the lifetime financial cost to parents caring for a child with congenital blindness compares to the utility loss to parents due to an inability of their child to see. Although difficult to quantify, the economic value to parents (often termed the 'willingness to pay' by economists) of restoring vision to their child likely far exceeds the monetary caregiver costs incurred by raising a child with blindness. Put differently, most parents would likely be willing to pay a great deal for a therapy that cures childhood blindness.
This example illustrates a broader point: family members and others may highly value improvements in the health of loved ones, independent of (and likely exceeding) any reductions in caregiver costs that occur with improved health. Despite this simple observation, however, the current approach to valuing new health care technologies relies almost exclusively on the value of improved health to patients and not the lives of family members and loved ones whose lives are also affected. Health technology assessments and current 'value frameworks' that aim to measure value of new health care treatments largely ignore this fundamental way in which health affects society. Exceptions exist, but for the most part spillover effects of improved health to family members and loved ones are rarely measured and even more rarely included in cost-benefit assessments of drug value.
Family Members Value the Lives of their Loved Ones
The current approach to estimating value in health care fails to recognize that life is valuable not just to those whose life is at stake but to loved ones. This may seem obvious, but nearly all estimates of how much we are willing to pay for health care ignore the value of health improvements to families and other caregivers. More concretely, current economic estimates suggest that, on average, individuals are willing to pay between $100,000 to $150,000 for an additional year of healthy life. These figures serve as a basis for assessments of drug value. By these estimates, a drug that extends life by four weeks and costs $20,000 would be deemed socially wasteful (i.e., cost approximately $240,000 to generate a year of healthy life across the population). But these current estimates stem from what individuals are willing to pay for a year of (their own) life, not the spillover effects that accrue to family members and loved ones. The societal value of an additional year of life is, therefore, likely much larger than what current estimates suggest.
What would be the impact on economic evaluations if one were to take a broader view of the value of new health care technologies, i.e., one that directly measures the spillover effects within the family rather than treating patients as isolated individuals? Research to inform this issue is scant but at least one economic analysis suggests that some therapies that would not be cost-effective from the individual patient's perspective (i.e., involve costs per quality-adjusted life year that exceed, say, $150,000) would be cost-effective when disutility to the spouse of having a husband or wife with illness is accounted for. Unfortunately, very little evidence exists to guide exactly how much more 'cost-effective' therapies would be if these spillover effects were incorporated.
To these points, the first Panel on Cost-Effectiveness in Health and Medicine—a panel convened to establish guidelines for assessing the benefits and costs of health care technologies—recognized early on that from a societal perspective, all health and cost effects that flow from a treatment should be counted, even when the recipients include others such as spouses, parents, children, and other loved ones who value the health of the person with disease. The second Panel on Cost-Effectiveness in Health and Medicine, which was recently convened and whose recommendations have now been published, has updated its guidelines to recommend that value assessments should routinely incorporate both a health care sector and societal perspective, the latter which incorporates spillover costs and benefits to all members of society.
The impact of an individual's disease on family members may not only be limited to loss of well-being. A large national analysis of Medicare beneficiaries found higher rates of mortality among beneficiaries whose spouse recently died and a related analysis found higher rates of mortality after hospitalization of a spouse. Both studies highlight the important, measurable impact that adverse health in an individual can have on the health of family members. These studies suggest that, at the very least, value assessments could take a broader 'family perspective' by directly incorporating estimates from previous studies of how of adverse health outcomes for individuals impact spousal health.
What Next?
Quantifying how much individuals are willing to pay for improvements in the health of loved ones is both conceptually and tractably difficult, but nonetheless important. From a conceptual standpoint, one must grapple with ethical considerations that the value of improved health for an individual could depend on the degree of social connectivity (i.e., few would argue that cost-effectiveness thresholds for a treatment's value should be higher for individuals with larger families). For this reason, the family spillover effects of improved health are most relevant at the population-level and not individual-level. From the measurement standpoint, methods must be developed to systematically estimate the willingness to pay of individuals for improvements in health of their family members and loved ones. These valuations must then be aggregated in a way that allows us to better measure the societal, rather than individual or private, value of improved health.
Increasing efforts to measure the value of new health care technologies will require advancements in the science of measuring value and the incorporation of methodologies that are already known. In addition to the value that individuals themselves derive from better health, other sources of value have recently been described, all of which take a broader societal view of how improvements in health affect society at large. Within these societal sources of value, recognizing the value that improvements in health create for family members and loved ones of those affected by disease is critical.
Authors' Note
Funding support was provided by Pfizer, Inc.
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