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The unofficial health care system

Illustration of figures pulling up a healthcare cross.
Illustration: Aïda Amer/Axios

When we talk about the cost and complexity of the U.S. health care system, we usually don’t account for the time, money and labor donated by friends and family members — sometimes even strangers. But those unofficial supports are a large and growing part of American health care.

Why it matters: Americans raise hundreds of millions of dollars per yer in donations to help with medical bills, and the care patients get from family and friends is worth billions. Caregivers bear a financial and emotional burden that the formal system depends on, but does not acknowledge or accommodate.

The big picture: Health care economist Aaron Carroll writes in The New York Times about his experience helping out a friend who was undergoing cancer treatment.

  • His stories, and the similar stories he collects from other patients and caregivers, will probably sound familiar: spouses and siblings taking time off work to be there during treatment; friends pitching in to offer a ride to the hospital, or help with child care.
  • These are all things we do without hesitation, but they are not free. There are direct costs, like travel. There’s lost productivity as people take time away from work. And caregivers then must rearrange their own lives, too.

It’s hard to put a number on the precise value of volunteer caregiving — most people don’t log the hours they spend in a family member’s hospital room — but whatever that number is, it 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 studies Carroll cites.
  • 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 billon — again, not accounting for the emotional toll on caregivers.

Patients also rely on friends, family and strangers to pay their bills.

  • 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.

Between the lines: 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.

What’s next: Lawmakers in several 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, Kaiser Health News reports.

  • 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, per KHN.

The bottom line, from Carroll: “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.”

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