The other unaccounted healthcare system

Discussions about the cost and complexity of America’s healthcare, don’t normally account for the labor cost provided by friends and family. But those supports are large and a growing part of the U.S. healthcare.

Millions of dollars are raised every year in donations to help with medical bills, and care provided by family and friends is worth billions. Family and friend caregivers bear a sizeable financial and emotional burden that the formal system depends on, but does not pay or accommodate. The precise value of volunteer caregiving is hard to estimate but definitely is not small.

• The average cost of caring for someone with cancer can range from $7,000 during initial treatments to as high as $72,000 over a longer timeline, according to The New York Times (NYT).
• The Alzheimer’s Association, meanwhile, says 16 million people are caring for someone with Alzheimer’s or dementia. It estimates the value of that care at $234 billion — again, not accounting for the emotional toll on caregivers.
• Medical campaigns on the crowdfunding site GoFundMe raise about $650 million per year., the company says. It sees roughly 250,000 medical campaigns a year.

Access to these unofficial support systems is not equal. A successful medical GoFundMe often takes a certain level of production value, including access to video equipment; and volunteer caregiving often requires a flexible job and some level of disposable income, making it easier to assemble higher up the socioeconomic ladder.

Kaiser Health News reports that lawmakers in some states are considering tax credits to help caregivers either hire professional help or defray certain costs — for example, retrofitting a home to accommodate a disability. California is debating a caregiver tax credit, and AARP is pushing similar proposals in Arizona, Illinois, Nebraska, New Jersey, New York, Rhode Island, and Wisconsin.

From the NYT article “Rides to the hospital are care. The time spent at home with those recuperating after procedures is care. Watching and monitoring and caring for the ill in their home is just as much care as doing the same in a hospital. We are willing to pay a fortune for the former, and almost nothing for the latter.”

source: https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2019.00087