Find out if lack of health literacy keeps people from ACA benefits

Joanne Kenen

About Joanne Kenen

Joanne Kenen, (@JoanneKenen) the health editor at Politico, is AHCJ’s topic leader on health reform and curates related material at healthjournalism.org. She welcomes questions and suggestions on health reform resources and tip sheets at joanne@healthjournalism.org. Follow her on Facebook.

Wordle-health-literacyYet another study tells us how little the public knows about the Affordable Care Act, and how even the people most likely to benefit from it are often unaware. The study, from The Robert Wood Johnson Foundation and The Urban Institute, found that fewer than four in 10 uninsured adults thought they would get insurance this year. Most don’t realize they may be eligible for subsidies or expanded Medicaid.

We all know that the Affordable Care Act is complicated, and the intense political fighting about it has added to the confusion and the challenges of getting simple apolitical messages across.

But is it all about politics and messaging? How much of a role does “health literacy” – or more specifically “health insurance literacy” play?

A recent Urban Institute policy brief  lays out two poles. On one end is a river of information. The other, a flood of confusion.

“States and the federal government will be providing a great deal of information on the multiple options available through the Marketplaces. Insurance agents, brokers, navigators, in-person assistors, and call center personnel will also be deeply involved in providing support to potential consumers. But insurance is a complex product, particularly for those without prior experience purchasing coverage. If consumers do not understand basic insurance concepts, they will find it hard to make the choices that best suit themselves and their families.”

But the brief also analyzed a survey of how confident people likely to use the exchange are that they understand key insurance terms such as co-pay, premium or deductible. Overall, fewer than 40 percent were very or somewhat confident in their understanding. Confidence levels dropped among younger, poorer and sicker people.

A recent essay in The Atlantic by a psychologist who works with cancer patients also describes how low literacy may affect treatment decisions. The author wonders if it’s also leading to people making poor choices when they seek a health plan in the exchanges.

You can probably find some good local stories about health insurance literacy. Is the lack of understanding an impediment to people even taking the first step toward checking out coverage options? Do the brokers and navigators and other outreach workers explain the terms – or do they assume their audience already knows? Are the materials being used in your community explaining the terms – or going over people’s head?

Choosing a health plan can be confounding for the most health literate among us. It involves some educated guesswork about what your or your family will need and how to balance coverage and exposure. Being too unsure of the vocabulary to even start the process can stand between people and benefits to which they may be entitled.

2 thoughts on “Find out if lack of health literacy keeps people from ACA benefits

  1. Claire Santos

    I’ve been shouting this from the rooftop in Hawaii for a year. I met with the Health Connector Executive Director last summer and was politely shown the door when I pointed out that the website is at 12th grade English. “We think we’re doing fine,” is what I was told. Literacy, health literacy, insurance literacy – whatever you want to call it – has not been recognized in my state where it concerns educating and enrolling people in health insurance, in my opinion. Hawaii has had a miserable and embarrassing turnout for PPACA enrollment, and it’s doubtful that the Health Connector will be self-sustaining by 2015 – which means the state may take it over. What a mess! Why not advertise and assist people at a level that most will understand, allowing for multiple languages, and provide special assistance where needed? Can’t blame Obama for this situation!

  2. Robert A. Duke

    I’m sure health literacy affects people considering ACA benefits. Why? Because in my experience even the most literate people, university faculty, lack even rudimentary understanding of their health insurance and healthcare benefits. My research and experience in Washington state and Whatcom county found that Washington health insurance plans for state employees lack any explanation, online or in print, about how the plans function and, consequently, employees don’t know how to use them. Not even the insurance commissioner’s State Health Insurance Benefits Advisors (SHIBA) office can explain the plans. State employee human resources offices have no explanation or understanding of the plans in order to assist insured state employees. I spent 18 months embedded in the state insurance system as the sole caregiver for a terminally ill cancer patient and came away with little understanding or information. Subsequent research into the system for another 18 months uncovered little more information.

    Local primary care doctors treating patients covered by state health insurance admit to not understanding state health plans well enough to write a prescription with confidence that it would be filled without a problem. So, what do the doctors do? They write a prescription any way knowing that if it is denied someone from the state insurance system will contact them to explain how the prescription should have been written.

    There is nothing unique about this because this condition is true to some degree of all health insurance plans. The healthcare system and insurance plans for its use are so complex that neither literate patients nor trained survivors can navigate it with certainty.

    There is a lot of talk of reform but little action. Instead, more layers are added to an overwhelmingly layered system, whether it is the Palliative Care Initiative or Affordable Care Act. Heaping more on top of a bad foundation only cannot be considered reform.

    For more views on this matter see the Waking Up Dying blog at robertaduke.com.

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