By Alexis Kayser

Healthcare Editor

0

Share

Newsweek is a Trust Project member

See more of our trusted coverage when you search.Prefer Newsweek on Googleto see more of our trusted coverage when you search.

This is a preview of Access Health—Tap here to get this newsletter delivered straight to your inbox.

To commemorate the Fourth of July weekend, I have an American story for you. It's got all the Stars and Stripes: entrepreneurial spirits, bootstraps mentalities and the familiar drag of bureaucracy.

Read More on Health Care

For the past several months, I've been working on this feature story about how patient advocacy groups are changing the pace of health care, working to find and fund cures for their loved ones' rare diseases (and, in some cases, their own).

What I found was a community of ordinary people doing extraordinary things—not because they had the time, training or resources, but because they had no other choice. Parents, spouses and patients have taken on roles once reserved for pharmaceutical executives and lab directors, plunging headfirst into grant writing, data sharing and even drug development.

These patient advocates are becoming increasingly important to the field of rare disease research, Dr. Dominique Pichard, director of the NIH's National Center for Advancing Translational Sciences' (NCATS) division of rare disease research and innovation, told me. Less than 5 percent of known rare diseases have an FDA-approved treatment available.

Research efforts tend to focus on impacting the most lives with the fewest resources, as grant funding is competitive and hard to come by. But this means that many rare diseases are left untouched. Conditions that impact fewer than 200,000 Americans are difficult to lobby for—and those that do garner attention still face challenges when looking to establish expert advisory panels or fill a clinical trial.

That's where patient advocacy groups come in, compiling data, educating providers and serving as connectors between small populations and large research institutions.

In some cases, their efforts have helped fast-track clinical trials. In others, they've secured the first-ever FDA-approved treatment for a rare disease. But while their success stories are remarkable, they also raise bigger questions: Should patients be expected to do this much? Should finding a cure for a devastating condition depend on how many calls a parent is willing to make or whether they can raise $5 million?

"[This work] is really important, but it has also created a pressure on families," Pichard said. "They feel like selling their assets, quitting their jobs and learning science is the only way [their] child can get a cure."

This piece explores that bittersweet tension between the promises and pressures of patient-led progress. I hope you'll give it a read this holiday weekend, and maybe share it with someone who, like the advocates featured, refuses to take "no" or "slow" for an answer.

Essential Reading

• The FBI has uncovered $14.6 billion worth of fraudulent claims submitted to Medicare, Medicaid and other government health care programs, the agency said on Monday in conjunction with the Department of Justice (DOJ). The investigation resulted in 324 defendants being charged, including 96 medical professionals.

• Microsoft AI unveiled new research demonstrating AI's abilities in sequential diagnostics. The company's new model-agnostic MAI Diagnostic Orchestrator (MAI-DxO) achieved 85.5 percent diagnostic accuracy—outperforming generalist physicians, who reached the correct diagnosis 20 percent of the time, on average.
• • The study has its limitations. Microsoft's panel of 21 U.S. and U.K. doctors had a median of 12 years of experience but were not allowed to use search engines, language models or other sources of medical information when interacting with SDBench. These tools are common in physicians' practices, with about 1 in 5 using generative AI and about 7 in 10 using search engines on a regular basis, according to recent research—so the human participants may have achieved higher diagnostic accuracy if allowed to access their typical suite of online resources.
  • The report received mixed reviews, generating significant hype in the digital health care space but receiving pushback from skeptical physicians.
  • I spoke with Microsoft AI CEO Mustafa Suleyman and Health Vice President Dr. Dominic King about the research ahead of its release. Get the exclusive scoop here.
• The Joint Commission has launched "Accreditation 360," a project it says will set a "new standard" for health care accreditation—using data analytics to fine-tune its focus on benchmarking and outcomes. The reforms include an updated accreditation manual, a new certification program, and moves to improve transparency and streamline processes. The organization has removed 714 requirements from the hospital accreditation program.
  Read all about The Joint Commission's dive into the digital era here, featuring exclusive insights from President and CEO Dr. Jonathan Perlin.
• • Read all about The Joint Commission's dive into the digital era here, featuring exclusive insights from President and CEO Dr. Jonathan Perlin.

• The Senate voted to advance President Donald Trump's One Big Beautiful Bill (H.R. 1) on Tuesday, approving nearly $1 trillion in proposed Medicaid cuts that would revoke health care coverage from at least 11.8 million Americans over the next decade.
• • The House Rules Committee advanced the Senate's proposed changes, andat the time of writing on Wednesday afternoon, House Republicans were gunning to approve the final version by July 4.
  • In an opinion piece for The New York Times, Larry Levitt, executive vice president for health policy at KFF, wrote: "This Republican policy bill is effectively a partial repeal of the Affordable Care Act to help pay for tax cuts, and should it reach President Trump's desk, it would represent the biggest rollback in federal support for health coverage ever."

Pulse Check

...

Paul Markovich is the president and CEO of Ascendiun, the nonprofit, ultimate parent company of Blue Shield of California, Blue Shield Promise Health Plan, Altais and Stellarus. He previously served as CEO of Blue Shield of California from 2013 to the end of 2024 and currently sits on the boards of the Blue Cross Blue Shield (BCBS) Association and America's Health Insurance Plans (AHIP).

On Tuesday, I connected with Markovich to discuss last week's prior authorization reforms, born from a roundtable with health insurance companies and backed by HHS and CMS.

Editor's Note: Some responses have been lightly edited for length and clarity.

AHIP and BCBS were involved in these reforms, and you sit on the boards of both. From your perspective, when did these conversations about changing the prior authorization process really begin?

They've been going on for probably the better part of a year behind the scenes with both trade groups. The plan was to develop these criteria and then go out and publicly announce them, but we [decided] we would love to get some positive feedback and support from the federal government. In particular, the Centers for Medicare and Medicaid Services is a pretty big customer and client on this one.

So we went to them and said, "Look, this is what we've come up with. This is what we're planning on doing. A, How do you feel about it? And B, Would you be willing to say you feel good about it in public?"

And they said, "You know what? We really like this, and before you go public, let's talk about this in more detail, and go out effectively together and talk about these changes."

That ultimately led to the announcement, but it was very much conceived and driven by the trade associations for the health plans.

The prior authorization process has been debated by physicians, hospitals, health plans and even the government for a number of years. What about this particular moment made it time to act and lean into reform?

It was really clear this was our top pain point with patients, with the physician community and hospitals as well. This was the thing that was causing the most frustration and friction in the system.

There was the sense that the status quo was problematic, and that at some point there would probably be a solution, or solutions that were developed. Then the question would be, who was going to develop them, and where was [reform] going to come from? Was it going to come from the federal government, state governments? All of those were possibilities.

And I think we all just recognized we can do a whole lot better than this, and we need to do a whole lot better than this—and we can either construct something that we feel would be impactful without being detrimental, or we can wait for someone else to develop a solution which might be impactful but could also be detrimental, depending on how it's crafted.

There have been various events along the way, various ups and downs in the political process, but eventually, this was too painful of a point to be left alone.

One of the reforms laid out in the pledge is the standardization of electronic prior authorization submissions. What has been holding up the digitization process, and what will be the greatest challenge going forward?

One of the biggest barriers to getting there—and it is going to be our biggest challenge going forward—is establishing and adopting standards for the real-time digital exchange of the information. And I know this from personal experience, because I've been a champion of creating a comprehensive digital health record for every American for many years. We managed to get a law passed in California that requires the sharing of data from physicians and hospitals to health plans: so we have actually created for our members a comprehensive, real time digital record in California, but it's in part thanks to that law and the requirement to share the data.

But what ends up happening most of the time in prior authorizations is the health plan will say, there are certain best practices in health care that have been researched, that clinicians agree upon. There's a consensus about what the model of care should be in this situation, and what [the provider is] proposing to do is not consistent with that.

But typically what happens is you [as a health plan] don't have all the information on the member. It's there in the medical record somewhere, but it hasn't been sent to the plan in a format that they need to say, "Yes, I can match this up. This patient has this diagnosis. Yes, their test results would indicate that they need this procedure or this drug. It's consistent with medical protocols."

So typically, we're missing information, and then a series of time (days, sometimes ) that goes by where we're faxing requests for information. That's been the biggest challenge in the pre-authorization process. When we announced as a plan back in the fall of last year (before these industry announcements) that we were going to a real-time digital solution for prior authorization, we did a little spoof video with me bashing the fax machine to smithereens, which you may find entertaining.

To me, that's the biggest thing, Alexis. It's getting standards and protocols down, getting that data available. How is it that the health plan can access that information on the patient, from the physician and hospital, and more broadly, from all of the care that they've had in their history of care? If we have access to all of that, there's absolutely no reason why these prior authorization decisions can't happen as quickly as your prior authorization decisions do on your credit card, and that's what we're shooting for. But what needs to happen is that digitization of the data and that real time sharing of it—and there's been challenges with that, historically.

C-Suite Shuffles

• Oregon Health & Science University tapped Dr. Shereef Elnahal to serve as its sixth president after a lengthy national search. Previously, Elnahal was appointed by President Joe Biden as undersecretary for health at the VA.
• Debra Jaeger is the first chief revenue officer at Mount Sinai, based in New York City. In the role, she'll be responsible for integrating revenue cycle operations across the health system, reducing variation in processes and eliminating silos.
• Rich Liekweg is retiring from his role as CEO of BJC Health System on October 1. Liekweg joined the St. Louis-based health system in 2009 and assumed the top role in 2018. He was instrumental to the health system's growth and oversaw its 2024 merger with Saint Luke's Health System in Kansas City. Nick Barto, current president of BJC, will succeed Liekweg.

Executive Edge

...

Dr. Jeffrey Giullian is the chief medical officer of DaVita Kidney Care, which provides kidney care and dialysis services across the nation and works to transform the experience of the more than 35 million people in the U.S. that live with chronic kidney disease (CKD).

Giullian has been busy at DaVita, which is growing its value-based care arrangements and expanding access to kidney transplantation. (Last year, more than 8,200 DaVita patients received a kidney transplant, the company's highest number of annual transplants to date.) He also lives a full life outside of work, serving in an advisory capacity at the University of Colorado and the Denver Business School, and preparing to be an empty-nester when his daughter begins college at UCLA this fall.

For this week's Executive Edge, I connected with Giullian to learn how he juggles it all:

• "Prioritizing health and wellness is something I take seriously—not just because of the demands of my role, but because I believe it's foundational to showing up as my best self, both professionally and personally. One of the ways I stay grounded is through running. It's a consistent part of my routine that gives me space to reflect, recharge, and maintain physical and mental clarity.
• "I also try to be intentional about how I spend my time outside of work. With my daughter preparing for college, my wife and I are focused on making the most of this chapter as a family. That means carving out time for meaningful experiences, even amid a full calendar. I've found that when I align my personal time with what matters most—family, movement and purpose-driven work—it becomes easier to maintain energy and perspective.
• "Wellness, to me, isn't just about physical health. It's also about staying connected to a sense of purpose. When I feel aligned with the work I'm doing and the values I hold, I'm more energized, more present and more resilient in the face of challenges. That sense of purpose acts as a compass. It helps me make decisions about where to invest my time and energy, and it keeps me grounded when things get busy. Whether I'm contributing to meaningful change in health care or showing up for the people who matter most in my life, I've found that fulfillment comes from knowing that my actions are part of something larger."

This is a preview of Access Health—Tap here to get this newsletter delivered straight to your inbox.

View 0 Comments

Request Reprint & Licensing

Submit Correction

View Editorial & AI Guidelines