Costs of caring

The NYT today has a post about the cost of caring for an elderly parent. One of the projects on our writing list is an article about measuring the soft costs of having an autistic child. We call these soft costs because one standard measure of evaluating medical treatments from a public health or insurance perspective is the quality-adjusted life year (QALY), which excludes caregiver costs.

The QALY is an attempt to measure the cost of a particular treatment and the benefit to the patient. As a stark and simple example, the cost of rabies shots for a 22 year-old of $1000 (guessing here) would provide perhaps 50 years of life (since untreated rabies is otherwise almost always fatal and rabies treatment is almost always effective). Thus the QALY is $20, a great deal. Significantly higher QALY expenses are often covered by insurance, Medicare, and Medicaid.

The soft costs, the costs of a disease borne by someone other than the patient, are apparently not part of the QALY analysis. This distinction makes sense only because measuring those costs are harder and do not fall equally on all families/patients; someone who fails to take advantage of marginal work loses more money if that person is a dentist charging $150 for an hour cleaning vs. a mechanic making $30 an hour for overtime.

Our research several months ago did not yield a QALY for autism (again, variation in severity would complicate the issue, but cancer is complicated too). Part of the benefit of having such a number is to give autistic families a clearer voice in the discussions about allocation of public health monies and insurance coverage. Adding the family costs into the discussion is important for several reasons:

• family members remain primary caregivers even when a child has a fulltime placement in a quality educational institution
• treatment regularly includes substantial training of, and participation by, parents
• autism is a fulltime condition, and so unless a child is cured, there are long-term impacts on family dynamics and economics that are not readily captured in a short-term snapshot of family finances
• autistic children often have a complex of related or unrelated (from a medical perspective) problems, such as sleep disorders, gastrointestinal distress, seizures, or mental retardation
• the lifelong nature of autism means that costs will be incurred for a very long time. Autism is not a fatal disease, and so there is, from an economic perspective, no real end to the costs to be incurred by the family and the child

We would appreciate pointers to relevant QALY literature, published numbers, and policy statements regarding the relationship between QALY and funding decisions. We hope to turn this QALY discussion into not only a section of the 30seats wiki but also into a published article or letter.