A Nonprofit Trying to Make Health Care Not a Choice Between Bankruptcy or Suicide Either never get sick or hope that the NABIP’s pursuit of adequate, affordable health care prevails

The National Association of Benefits and Insurance Professionals (NABIP) is a nonprofit trade organization that “represents more than 100,000 licensed health insurance agents, brokers, general agents, consultants and benefit professionals.” NABIP members help millions of clients individually and through our employers to find the best health insurance policies at the best prices, and later they serve to answer questions and help settle claims.

NABIP also wants your stories about the difficulties of getting health care—and paying for it—to be heard.

Even if you have been lucky enough (so far) not to have nightmarish health care stories of your own, we have all heard them: the bill for thousands of dollars for an excluded dental procedure; unlisted fees that vary wildly for the same medical services; a loved one whose nonexempt home must be sold to get a Medicaid bed in an assisted long-term care facility.

Or maybe you have heard the one about the seemingly endless series of bills that trickle in over months for a single medical event: one for the hospital facility, one for the contracted ER doctor, one for the Emergency Department, one for the blood lab, one for the off-site MRI scan, one for the consulted specialist to read the scan…. Just when you think you are done, another bill arrives. Fall behind in payments, or just get confused, and even a hundred-dollar debt can lead to harassment by a series of debt collectors who buy your debt from each other, lose track of what it was for or who the provider was, and make things harder to resolve.

Former US Surgeon General Dr. Jerome Adams was in the news recently, angrily telling his story of a $4,900 bill from an emergency department for simple rehydration after a hike.

He told Business Insider, “If I’m in this situation with my knowledge and with my financial resources and with my bully pulpit, then the average Joe doesn’t stand a chance. The system is just broken,” he said. (How this is news to a Surgeon General is a different mystery.)

“Yes folks. THIS is America. Land of the free, and home of the medical bankruptcy,” Adams said on X, formerly Twitter.

Two-thirds of Americans who file for bankruptcy say medical debt was a key factor. And, “More than 100 million people in America—a startling 41% of adults—are saddled with medical bills they cannot pay,” says the report “Diagnosis: Debt,” from KFF Health News (a health-issues nonprofit), NPR, and CBS News. A quarter expect to die still owing money.

Does it get worse? Plenty. For instance, “20% of U.S. hospitals will deny nonemergency care to patients with an outstanding bill,” the report says.

Do you know what a given medical emergency (or even scheduled visit) might cost and how that bill will disrupt your life and plans? Do you know how to navigate the morass of insurance jargon and arcane corporate health care rules?

Do you know how your parents will manage, when “highly profitable [assisted-living] facilities often charge $5,000 a month or more and then layer on extra fees at every step,” even for reminders to eat, as the New York Times found? Many assume Medicare will provide, but Merrill (previously Merrill Lynch) says, “A 65-year-old couple will need $318,000 in retirement for a 90% chance to cover out-of-pocket healthcare costs.” This does not include any long-term care expense.

According to the World Health Organization, the “world is off track to make significant progress towards universal health coverage.” In the United States now it seems unthinkable. “[T]he U.S. spends nearly 18% of GDP on health care, yet Americans die younger and are less healthy than residents of 37 other high-income countries,” says the Commonwealth Fund, an American foundation that promotes high-performing health care for all.

In the current Frankenstein monster of a system stitched together with employer health plans, private insurance, the Affordable Care Act (Obamacare), Medicare, Medicaid, and other supplemental policies and stop-gap programs, do you know who speaks for you?

• • •

In recent years corporations have been calling their marketing “storytelling.” They do not mean narratives that reaffirm our individual personhood and common humanity. Their “stories” are propaganda meant to sell you things and services, whether you need them or not. But the shift was tacit acknowledgement that “stories” do something that “ads,” “corporate news releases,” and “data” do not. Stories affect the emotions and make things personal; they are often harder to argue with.

The word “stories” was used often at the annual NABIP Capitol Conference, held in the Hyatt Regency Capitol Hill, Washington, DC, February 25-28, 2024. I went because I have my own stories of frustration with health care, and because I am interested when someone seems ready to try to make things better in the largely incomprehensible and vaguely menacing system we all rely on.

The conference turned out to be two events, and attendees at both shared human stories of suffering, needs, and worries, to advocate for improved health care.

• • •

The first event of the conference was a typical, multi-day conference with officer meetings; speakers from the health care industry, government, and nonprofits; and general- and breakout-sessions with wonkish titles such as “Medicare Caps, Drug Price Negotiation, and More: The Inflation Reduction Act Explained.”

The panel “Future-Proofing Health: What to Expect in Long-Term Care [LTC]” got “granular” (another oft-used word at the conference) on how much each state spends on public-funded assisted-living facilities, nursing homes, at-home help, and community support programs for elders. As a Washington state program says, “Long-term care can be expensive. Most of it is not covered by Medicare or health insurance, and Medicaid only covers it after you’ve spent your life savings down to $2,000.”

That program, WA Cares Fund, got the most time in the session, because it was the first (2019) state legislation in the United States for “a public long-term care insurance program [that] guarantees coverage for all workers regardless of pre-existing conditions [and offers] an affordable way for the broad middle class to access long-term care without having to spend down their life savings.”

Panelist and NABIP member Steve Cain told his family’s “raw emotional story” of spending $11,000 per month for assisted care for a loved one. (He later repeated it to a Congressional staffer.) He said that when he told it to a state senator at an event, four other senators rushed to tell their own stories. In response, a man in the audience told his own story of spending $300,000 on medical bills in a short period and having to restructure his business.

NABIP stresses that what they do and what they advocate for is apolitical, but an important part of the WA Cares story is that the Fund has effectively failed, panelists agreed, before being fully implemented, due to political efforts led by a hedge-fund manager who “said he fled California for the Seattle area more than a decade ago partly to escape taxes” and has spent millions of his own money in Washington state to fight taxes and social services.

Insistence on being apolitical is practical, but it created other dissonances at the conference, such as the choice to have Amy Walter, publisher and editor-in-chief of The Cook Political Report, deliver a keynote speech on the 2024 presidential election. Because Walter never mentioned health care or tied probable consequences of the election to candidates’ opposing visions of social safety nets, the crowd seemed interested but slightly confused.

The closest that Walter got to the matters at hand was to say that elections this year would be close, and small things might produce changes as dire as an avalanche. NABIP members needed to vote in primaries, she said, no matter if they lived in a red or blue state, since members of their state legislatures and county and school boards would be “getting elected by like 5,000 people,” and in some cases 10,000 voters could elect a politician to represent a million at the national level.

She did suggest attendees might be the electric shock that kept politicians from continuously pressing the feed bar of extremism by saying, “‘Oh no no no no, you can’t get away with doing that. It’s not cool. It’s not what we want to see.’” She thanked them for engaging in civic discourse while in town and going back to their communities to explain what they did in DC and how things work there. She ended cryptically with, “It’s the right way to make the kind of change you’re looking for.”

Senator Tina Smith, the junior US Senator from Minnesota and a member of the Minnesota Democratic–Farmer–Labor Party, was invited to share her story about speaking publicly, early in her senate career, about her struggle with depression.

“I shared my story because I wanted anyone who was suffering from challenges with mental health to feel like they weren’t alone,” she said. She said she would “never forget the story of a Minnesota woman” who had received treatment for mental health disorders only because they were available by a telehealth program.

Smith said one in five Americans will struggle with mental health, which meant that many of the 500 people in the room had their own stories, or carried those of friends or family. By telling the stories, breaking the stigma, and helping people access resources and treatment, they could help loved ones as Smith herself got help, early and adequately.

“My hope is that everybody would have that experience,” she said. “And yet we know that this is far from true for so many Americans. And that’s what we have to change; that’s what we’re working on together.”

Senator Tina Smith (D-MN) speaks on mental health issues at NABIP’s CapCon 2024, Washington, DC (Photo by John Griswold)

Smith said there is “strong bipartisan support” for improving access to health care—she helped create the first bipartisan Senate mental health caucus—but neither she nor any other speaker at the conference addressed the fact that Donald Trump, currently leading in the polls, has suggested he would try (again) to repeal Obamacare (the Affordable Care Act), despite its popularity with the majority of Americans and with no alternate plan, or that he hopes to reduce funding for Medicare, Medicaid, and Social Security.

Jonathan Blum, Principal Deputy Administrator & Chief Operating Officer of CMS, was interviewed onstage. CMS (Centers for Medicare & Medicaid Services, under the Department of Health & Human Services) “is the federal agency that provides health coverage to more than 160 million through Medicare, Medicaid, the Children’s Health Insurance Program, and the Health Insurance Marketplace.”

Blum discussed “tremendous” changes that were coming in programs such as the Medicare Prescription Payment Plan. “Like everything that we do, this is going to be complex for the beneficiaries, it’s going to be new, and so this requires all of us collectively to be able to tell the story well,” Blum said.

CMS has 27 sub-units, including the Center for Consumer Information and Insurance Oversight (CCIIO), “charged with helping implement many reforms of the Affordable Care Act….” CCIIO’s Jeff Grant, Deputy Director for Operations, was present to describe updates to the ACA’s annual Open Enrollment.

While Blum portrayed the tactful bureaucrat, Grant spoke roughly. Grant did thank NABIP members for helping with half the 21.3 million people now enrolled by the ACA, a 75 percent growth over three years, and said, “We have solved what I consider the quantity problem.”

But much of his talk was about problems he said are created by agents and brokers, including failing to record enrollees’ Social Security numbers, creating “excessive” DMI (Data Matching Issues—wrong information) and duplicate accounts, failing to capture demographic data that might be used to get CMS more funding, and not always getting, documenting, or maintaining proof of consent from consumers. He said his office received many complaints that led back to agents and brokers.

In fact, he said in a tense moment, the healthcare.gov site, which allows consumers to sign up for insurance by themselves, outperformed agents and brokers in several objective measures.

“You’re professionals, right?” Grant said. “It’s in your name, you’re professionals. We expect a professional job, we expect it to look better than when somebody comes to healthcare.gov.”

A low hum of table talk rose in the ballroom. He said DMIs were five to six times higher with agents and brokers than with the site, and that consumers were better at resolving their own DMI issues than when agents or brokers helped them.

“This is something we expect you to do better, not worse,” Grant said.

He acknowledged some broker agencies did a fine job, and that they were models for everyone present, but said CMS would “get after” some people and “get them out [if they] aren’t doing the right thing for consumers.” He added that CCIIO wants “open dialogue; you are our partners in bringing coverage to millions and millions of Americans; we need it to go right.”

Grant irritated some in the crowd at the start when he chided them for not saying good morning loudly enough and said, “Y’all are in sales, right? You did not sell that.”

NABIP members often do not see themselves as salespeople. To them, salespeople are the unlicensed workers in call centers who cold call, take consumers’ money, enroll them in insurance plans that may be wrong for them, and leave them without continued support.

Jeff Grant, Deputy Director for Operations, Center for Consumer Information and Insurance Oversight (CCIIO), had tough words for conference-goers (Photo by John Griswold)

Gaylan Hendricks, of Fort Worth, Texas (“Queen of the Bundle. CEO of Senior Security Benefits. Integrity Marketing Group Partner”), made comments at an open mic the hour before Jeff Grant took the stage. She told another audience member, who had previously identified as a broker, to “wash your mouth out with soap. You’re not a broker.”

Hendricks said she herself was an advocate and an educator, and her “father was not the insurance guy in town, he was community support.” She spoke about supporting her clients in unacknowledged ways, such as explaining what to do when their oncologist wanted specific documents. She said her minimal pay for this work made it impossible to hire someone to grow her agency.

A NABIP broker at the table I had chosen near the stage said it was a “sore subject” that CMS blamed them for not doing a good job. Agents and brokers are “heavily” regulated by the federal government and state departments of insurance, the broker said, and CMS continually added or changed rules and created financial and time-management difficulties with their demand for ten years of records management. They did this while cutting commissions and trying to push out FMOs (Field Marketing Organizations) and IMOs (Independent Marketing Organizations) that many members rely on as an interface with the big insurance carriers and for training, support, leads, and tools such as “quote engines.”

Eric Kohlsdorf, President of NABIP’s Board of Trustees, told me, “[W]hether we believe the numbers [Jeff Grant] used or not, any individuals falling through the cracks is a failure of the system–whether its healthcare.gov or a broker helping. If we truly care about the outcomes, we need to not only look at the cumbersome system issues but also look at the end product and not just the enrollment. How have those individuals fared with the insurance they ultimately purchase? Let’s change the discussion and talk not about how they enrolled, but how difficult it is for them to access the system once they’ve purchased insurance, or how much it will cost them out-of-pocket if they need care. At the end of the day, the cost of care is a barrier to overall health for a vast majority of Americans…. And the first step toward addressing the cost of care is to make the cost transparent and understandable to the average American.”

The broker at the table also spoke of problems with predatory, “churn-and-burn” TPMOs, third-party marketing organizations, who pushed patients into insurance plans that were not right for them and left them without further support. The broker believed this affected the numbers that Grant complained of.

A past president of NAHU (NABIP’s former name) writes, “[TPMO’s] place phone calls to Medicare-eligible consumers throughout the day, every day during the Medicare Annual Enrollment Period. Every person owning a TV is familiar with the onslaught of Medicare marketing advertising from October 1 through December 7 each year, some of which are misleading and prey on the elderly, urging them to ‘call now, it’s free!’”

(NAHU stood for the National Association of Health Underwriters. The NABIP broker told me, “We were never underwriters.” But the new name also seems to signal a renewed focus on advocacy. At the conference, NABIP released a “Healthcare Bill of Rights” “for all Americans.”)

The broker told me, “Our argument with CMS is that they can fund $100 million for navigators and community centers [that] don’t need to have an insurance license to enroll people and are not held to the same standards,” leaving agents and brokers—who are licensed and certified, as lawyers, CPAs, and MDs are, and who in many cases offer any-time, concierge-style services—with $300 total income per year from an insurance carrier per client.

Several NABIP members I spoke with said that in addition to signing up clients and reviewing their policies periodically, they help clients understand medical directions, listen to their worries, make appointments for them, and even go to their doctor appointments. One broker described her business not in terms of how many it employed, or by net income, but by “how many people [she was] able to help.”

In a society where “customer service” chatbots, corporate AI, and websites prevent access to a single human voice, this sounds reassuring.

• • •

The second event of the conference was the lobbying of Congress, by NABIP members, on health care policies that affect their work, our employers, and all of us. Two hundred meetings had been scheduled on Capitol Hill.

NABIP’s leadership carefully prepared three main talking points: 1) Medicare; 2) Preserving and Strengthening Employer-Sponsored Health Coverage; and 3) Addressing the Cost of Care.

“Medicare” asked that licensed agents and brokers be excluded from the “burdensome” recording of calls with clients. It also opposed eliminating FMOs and reducing current compensation.

“Preserving and Strengthening” supported the reduction of ACA reporting requirements that “expose…employers to threats of tax penalties and demand…unnecessary personal identifying information from individuals.” It also supported two bills (S. 3204 and S. 3207) to “ease the complex compliance reporting…for employers offering health insurance to their employees,” as well as the continued enforcement of ERISA (The Employee Retirement Income Security Act of 1974, now in its 50^th year), meant to “protect the interests of employee benefit plan participants….”

Finally, “Addressing the Cost” asked for “site neutrality,” which would “eliminate disparities in [medical care] cost based on location” of service, and the passage of the Lower Costs, More Transparency Act (H.R. 5378), which would require Medicare drugs to cost the same whether prescribed in or out of physicians’ offices.

Through the conference NABIP officers and Congressional staffers prepped members for visits to Capitol Hill. They were reminded to make more appointments, wear business attire, do their homework on who they would speak to, be sure to have a constituent at every meeting, stick to the script (“There are a lot of issues that vex us,” Dan Parker, NABIP Sr. Director of Policy and Engagement, said, but stick to the talking points “because they have a lot of traction in DC right now”), choose a lead for their group, time things out in the hallway, and speak with one voice. They were told to make the most of the meetings on social media and to follow up with Congressional staff afterwards.

Jay Gulshen, a staffer and Health Advisor for the Committee on Ways and Means, assured members, “We really need feedback from folks like yourselves that are on the ground living this every day, to understand what changes are happening,” and at what speed. “Is there anything better than we anticipated? Is there anything worse?”

In a session for NABIP Region VI (Arkansas, Kansas, Louisiana, Missouri, Oklahoma, and Texas), Ed Oleksiak, Immediate Past Chair of the NABIP PAC National Board of Trustees, reminded members to donate to NABIP’s national political action committee (PAC).

“[T]here’s two ways we get a voice on The Hill,” he said. “One way, is all of you going to the Hill and talking to your legislator. The other way of going there is being able to get a PAC check to those legislators; they listen better when we’re giving them money. […] Any amount counts. If you give a hundred dollars, if you give 50 dollars, to your local representative, they will treat you like you’re their best friend.”

He said the NABIP national PAC had $1.4 million, but when I checked the Federal Election Commission (FEC) site, it showed $374,000 “cash on hand at close of the reporting period” for 2023. The American Medical Society, with whom NABIP disagrees on policies such as fee transparency, has a PAC with $1.52 billion on hand at the end of 2023.

The two biggest things NABIP wanted to convey on The Hill, an organizer in the Region VI session said, were: “These are the things that we stand for, and don’t forget we’re a resource for you.” She said she had built that relationship with a Texas legislator, who used to tell her, “I can’t have a master’s degree in everything, so I need someone like you to call when it’s insurance-related.”

“He was in the CIA. He does, like, AI stuff,” she said. “[But] he didn’t understand what we do [so] he needed to understand that I’m the person you…call if you have a question about this issue. And that’s one of the most important things you can convey in these meetings.”

Though a bill of urgent interest to NABIP was in the Senate, most members would be seeing staff for their Representatives; the organization wanted everyone in Congress to be aware of the issues. An officer from Region VI said to stress that “their constituents are our clients,” and, “We’re working for exactly the same people.”

Kevin Trokey, Region VI Vice President, asked, “How many of you are feeling an energy the last couple of days with NABIP and the association that maybe we haven’t had for a while? And if you haven’t picked up on that yet, I promise you it’s coming.”

He admitted “the elephant in the room,” that membership in NABIP continues to decline, and it is a “struggle…bringing in the next generation of leaders and members.” Still, Trokey insisted, “There’s a story to be told…who we represent, what we do, the impact, the difference we make. And that’s the story we have to go out and tell.

“I will argue all day long that when an employer has access to the collective impact of the people in this room, you collectively represent the single most significant advisor they have. You are helping them with some of the most complex, complicated decisions they face in their business. You impact them strategically, financially; you impact them operationally; you impact them emotionally. And that’s a story we should go out and tell with great pride. And I think when you tell that story over and over and over again, there’s countless new members who say: ‘I want to be part of that. I need to be part of that.’”

“The younger generations are driven by social causes,” he said. “We’re not a social cause, but the impact that we make, the difference that we make in the businesses and lives of people [is] significant, and that’s the story we have to go out and tell.”

Eric Kohlsdorf, President of the NABIP Board of Trustees, told me something similar. “Our system is out of control, and we must all look to solve this problem. NABIP…members are keenly aware of the system–we represent premium payers, benefit payers, and providers of care. We are the only entity that sees the entire healthcare spectrum.”

• • •

I was invited to shadow small groups going to The Hill. A glitch developed when the director of a NABIP local chapter decided I should not be present in the meetings, for reasons I could not discern, and after we had all cleared the metal detectors in the Capitol, his 1^st Vice President, a first-timer on the Hill, began to shriek with wild eyes about “Protocol…process…procedure!”

It was fascinating because it was counter-productive to NABIP’s stated goals of transparency and public education, and so provincial as to be charming. Of course the halls of Congress have never seen such displays, and I did not want to be responsible for one, so I touched the 1^st Vice President’s elbow lightly and told her everything was ok, I would not go with their group.

Instead, I followed five high-level NABIP officials to the office of a well-known senior Democrat from the northeast. The senator’s staffer or advisor who was to meet the delegation was home, sick. She offered to reschedule or to have the meeting by Zoom; the delegation lead said they better do it now. We sat in a small conference room with a long table and no windows until the woman appeared on a large-screen TV on the wall.

The staffer spoke little, did not react to what was said, asked almost no questions, and gave no indication she knew what health care policy was. This seemed to throw the delegation into a bad place, and instead of using the situation as a teaching moment, as the rank-and-file had been told to do, the high-level folks froze, and the one-sided conversation petered out.

One of the NABIP officials assumed the staffer’s youthful appearance and apparent lack of knowledge or interest meant she was fresh out of college. He chose to bring up the third-most repeated thing at the conference: that Gen Z has little interest in health care or the problems their parents, or they themselves, will face, so instead of investing in insurance policies while they have time to compound, or getting active in advocacy, they do nothing. He said it nicely enough. The staffer listened then dropped the bomb that she is 40 years old and an associate professor at Purdue, where she conducts applied and translational research around issues of aging.

The meeting was saved when a member of NABIP’s National Long Term Care Working Group spoke to the advisor, whose family is in Taiwan, about her own aging family in China.

Between those two meetings I witnessed another that seemed to go ideally. In fact, the most impressive performance I saw at the conference was from members of the Missouri delegation, who went to lobby the office of Senator Josh Hawley (R-MO).

Earlier in the week I had been invited to a dinner where Max Karlin, NABIP’s Director of State Affairs, had suggested lobbying meetings “would go differently” in the offices of Republican congresspeople. Is this realpolitik? I looked forward to seeing how it might play out with Hawley’s people, since as Senator Claire McCaskill (D-MO) wrote in an op-ed in 2018:

“Josh Hawley decided to use your taxpayer dollars to file a lawsuit that would take away important prescription drug coverage for seniors through Medicare and end all [my emphasis] of the consumer protections under the ACA.” (Hawley joined twenty other Republican state attorneys general and others in the suit to try to kill the Affordable Care Act as unconstitutional.)

PolitiFact, which did not like McCaskill’s “all” at the time, confirmed her statement to be true. The lawsuit—the third Supreme Court challenge to the ACA—failed. Hawley took McCaskill’s seat in Congress.

This Missouri delegation was Hunt Bascom, Sr. Vice President at Spring Valley Group in Kansas City; Chalen Jackson, President of NABIP-Missouri; Becki Jennings, Legislative Chair for the Central Missouri Chapter; and Lynn Lewis, Professional Development Chair of the St. Louis chapter. They had an impromptu planning meeting in a loud stairwell as other lobbying groups and tourists walked by. They decided Jackson would take the lead, and what topic each person would speak on. It was hard to hear, but they made last-minute adjustments and swore to stick to script.

“Like herding cats,” Chalen Jackson told me with quiet good humor on the walk to Hawley’s office.

Amy Walter, publisher and editor-in-chief of The Cook Political Report, explained to attendees the lead-up to this year’s presidential election (Photo by John Griswold)

They met with Hawley’s Legislative Correspondent, a serious young staffer and apparent health care wonk named Alex Gorman. Jackson summarized the talking points; there followed an intense, polite, engaged discussion with Gorman, who asked questions that deepened the discussion. The NABIP crew took turns answering, expanded topics just enough for the brief time allotted, and told stories to illustrate their points. It ended with a leave-behind packet, a call for action, and thanks all around.

I could not follow it all. It was the kind of group that made a joke leaving the Capitol that the feds should enhance Medicare supplemental Part J in honor of (Chalen) Jackson, but that if they did they would probably insist on filling in the gap between existing Part G and Part J. They pretended to groan at the additional work of a Part H and Part I and laughed hard. Any of us can make an appointment with our senator or representative. Somebody should get these people national offices.

I do wish the delegation had been advocating for us more radically; they would be very fine in that or any other role they chose. But NABIP’s mission is to improve the existing system. It is in no way a revolutionary organization, and I think of Noam Chomsky’s line, “The smart way to keep people passive and obedient is to strictly limit the spectrum of acceptable opinion, but allow very lively debate within that spectrum….”

• • •

The utility of stories is limited. They may be “granular,” may “get down in the weeds” with specificity, but one could count grains forever and use it as an excuse to do nothing else. Begin to catalog some of America’s health care stories and you quickly realize they are all on two themes: financial burden and lack of care. At a certain point the repetition begins to sound as if we are turning things back on those who need help and forcing them to make changes magically by the sheer fact of their misery.

Will anyone find real solutions to America’s health care mess? It does not seem likely in my lifetime. Still, it was a comfort to watch NABIP at work, because I sense this is the way in, these specific people walking in their suits with their daypacks up to Capitol Hill.