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WAUKESHA, WI - MAY 1st: Former president Donald Trump speaks at a campaign rally on Wednesday May 1st, 2024.  (Photo by Sara Stathas for the Washington Post)

President-elect Donald Trump's promise to repeal the Affordable Care Act while <a href="https://www.washingtonpost.com/news/wonk/wp/2016/11/12/donald-trump-is-beginning-to-face-a-rude-awakening-over-obamacare/" target="_blank">preserving some key elements</a> has triggered rampant speculation about the future of American health care — and plunged millions of patients who benefit from the law into deep uncertainty about the future of their coverage.

Little is known about the replacement plan that will ultimately emerge. But one voice angling to shape future policy is the leader of the Mayo Clinic, neurologist John Noseworthy. The issue he thinks has been strangely missing from the years-long debate over malfunctioning websites, politics and soaring premiums is this: the patient's health.

Noseworthy argues that the Affordable Care Act that expanded access to health insurance to millions of Americans did so without nearly enough input from the patient — or the doctor.

“Patients are getting frustrated and fearful and anxious that they can't have access to the care that's best suited for them,” Noseworthy said. “How can you have a great country if our citizens can't get access to world class health care? It's actually not a bad time to reassess.”

Daron Taylor

The nonprofit health system Noseworthy runs is one of the best known names in medicine. The Mayo Clinic has provided guidance and advice to the federal government on health care issues for more than a century — regardless of who is running it. That close, nonpartisan relationship dates back to the Mayo Clinic's founder, <a href="http://www.mayo.edu/research/centers-programs/department-defense-medical-research-office/history" target="_blank">William Worrall Mayo</a>, who first moved to Rochester, Minn., to evaluate Union soldiers during the Civil War. Noseworthy said his team has already been in touch with the Trump transition team, offering their eagerness to help solve the complex puzzle of health care.

One of the biggest weaknesses of the Affordable Care Act, in Noseworthy's view, is that it expanded access to health insurance — in part by creating barriers to health care. Health plans have successfully controlled costs by restricting which doctors and hospitals patients can use and by shifting the upfront costs of care to patients through high deductibles.

Noseworthy has a self-interested reason to want sick people to have more choices — narrow health insurance networks often exclude prestigious and expensive health systems like the one he runs. But surveys suggest this winnowing of consumer choice while costs rise is on the minds of Americans. A <a href="http://data.fightchronicdisease.org/" target="_blank">survey by the Partnership to Fight Chronic Disease</a> and Morning Consult found that 77 percent of respondents had trouble using their health insurance in the past year. Half of respondents said that a doctor had recommended a treatment that was not covered by insurance to them or someone they know. In a <a href="http://kff.org/health-costs/poll-finding/kaiser-health-tracking-poll-october-2016/" target="_blank">Kaiser Family Foundation poll</a> in October, a majority of Americans said making sure health plans cover enough doctors and hospitals should be a top priority for the next administration.

A week after the election, Noseworthy spoke to the Post about what lies ahead for health care. This interview has been edited for length and clarity.

From a patient's point of view, do you think this moment could be an opportunity?

I do. I think we’ve been talking much more about premiums and websites than we have been about what patients need. The voice of the patient and, I would argue, the voice of the medical profession, hasn't been at the table for a long, long time. I think we could help.

The fact that access, which is pretty important to patients, is now being jeopardized and patients are feeling it — that has to be fixed. That’s really where the voice of the patient matters. The other, of course, is the unsustainability of the rise of the premiums for the middle class.

Most Americans are paying more for health care, and they’re kind of figuring it out now. They’ve had the Affordable Care Act for a while, but they didn’t realize what high deductible health plans really were until they got sick. And they said, “Wait a minute — I have to pay the first $1,000, $5,000, $10,000? I don't really have insurance unless I have a catastrophic illness.”

I think a tipping point is being reached in the country, where people are realizing that year to year to year, there are unsustainable increases in individual citizens' premiums, with no additional benefit to them. And they wonder what that’s all about. And they can’t pick their physician. And if they get really sick, they can’t go where they want to go.

Do you think those effects are trickling outside the Affordable Care Act?

The narrow networks are proliferating, and that is keeping the sickest of the sick away from the centers that do most of that care [for complex medical conditions].

The commercial insurers and the employers are playing into that narrative as a way of saving money — as opposed to appropriating money appropriately for better outcomes. The fundamental mistakes are cascading through the system, and that’s why perhaps a fresh look and a surgical repair and replacement of parts of it [the law] — perhaps this is a good time for it.

What would be the elements of the law most important to preserve?

Pre-existing conditions — to take those away would be be very hard. I think some annual or lifetime cap on costs for individual citizens will probably be preserved. Keeping kids under 26 [on insurance]. It falls off pretty quickly off after that. If asked to respond, “What about this one?” That’s where that measured, careful disciplined approach would have to be looked at. I think everything else is kind of up for grabs.

Are you concerned at all, given the lack of clarity about the health policy positions in this new administration?

I don't think anyone's freaking out, to be honest. This is a very complex puzzle to solve, and we would encourage a very careful review — a surgical approach. Meaning, as a physician, if a patient is ill, much of the patient is still healthy. And it’s your job to replace and repair the parts that aren't healthy, without harming the patient.

We’re really talking about replace and repair, rather than repeal. But we haven’t seen a full approach yet from the administration. Personally, this is me speaking, I don’t think it’s a bad thing — I’d rather be called in to a careful review and assessment of the situation and a thoughtful approach to a very complex problem, rather than a quick fix, which could be fundamentally flawed.

We’re basically optimistic we can create a better system together.

How would you say the Affordable Care Act has changed medical practice for doctors?

I think the multiple sectors are working together and recognizing they all have to work together to create a better outcome, whether it's a device company or a payer or an employer or providers. I think we weren't in that situation five to eight years ago, where we all saw we're part of the solution. I think it's a good thing.

The Affordable Care Act and the changes that have come along with that have created a very stiff regulatory environment. It’s been very, very hard for health care professionals. And if you’ve been a patient or studied health care, you know that in today’s world, the patient is no longer at the center of the room. The physicians and nurses are spending a lot of time documenting the situation, rather than asking about and listening to. And that removes a lot of professionalism and joy of the work.

For every hour a doctor spends with a patient, the doctor spends two hours documenting the one hour encounter. So the balance is off, and that’s created a huge threat to the profession.

What are your thoughts about drug prices?

We would believe that, like everything in health care, the products and services of health care ought to be priced based on the benefit to the patient. So a wonderful outcome in a complex situation should be priced higher than a poor outcome in a simple situation. There are some predatory pricing practices, which we would not be supportive of. On the other hand, a drug that changes a patient’s life and creates a cure or improves quality of life, we believe the free market system ought to reward that.

<a href="https://www.washingtonpost.com/news/wonk/wp/2016/11/09/winners-and-losers-in-the-health-care-industry-under-president-trump/" target="_blank">Winners and losers in the health-care industry under President Trump</a>

<a href="https://www.washingtonpost.com/news/wonk/wp/2016/11/14/trump-just-dropped-a-big-hint-to-the-pharmaceutical-industry/" target="_blank">Trump just dropped a big hint to the pharmaceutical industry</a>

<a href="https://www.washingtonpost.com/news/wonk/wp/2016/11/07/the-bizarre-reason-two-competing-drug-prices-rose-in-tandem/">The bizarre reason two competing drug prices rose in tandem</a>

Finalist for the 2013 Pulitzer Prize in national reporting, as part of a team

Amherst College, BA in Physics and English

MIT, MS in Science Writing

Carolyn Johnson is a science reporter. She previously covered the business of health and the affordability of health care to consumers. 