Introduction

Despite the fact that the US spends approximately 18% of GDP on healthcare—almost twice as much as the average Organization for Economic Cooperation and Development (OECD) country—our healthcare system is riddled with problems, from widespread inequities to poor outcomes to barriers to care (see Figure 1).[1] In this tripart series, we discuss three specific types of barriers to care for those living with severe mental illness—macroeconomic, legislative, and capacity—examining the nature of these access barriers and how they impact overall outcomes. In this second installment of the series, we highlight a legislative barrier to accessing mental health services that is deeply rooted in the Medicaid program.

Overview of the IMD Exclusion

Authorized under Title XIX of the Social Security Act and signed into law in 1965, the Medicare and Medicaid Act was designed to help create a social safety net for the most vulnerable members of American society, providing health coverage to adults over the age of 65, younger adults with disabilities, and low-income adults.[2] While this social safety net is far from perfect, one of the most pronounced gaps involves the institution for mental diseases (IMD) exclusion, which has been in place since Medicaid’s inception.

Medicaid is a joint federal-state insurance plan whereby states administer the program in accordance with federal regulations and the federal government makes matching payments to the states in a cost-sharing arrangement. However, the exclusion prohibits the federal government from making these matching payments for services provided in certain types of settings to Medicaid beneficiaries between the ages of 21 and 64, notably IMDs.[3] An IMD is defined as a hospital, nursing facility, or other institutional setting with more than 16 beds that is primarily engaged in providing psychiatric treatment and care to people living with mental illness, including substance use disorders, where the “primarily engaged in” threshold is met when more than 50% of a facility’s patients receive mental health services.[4] The exclusion applies to both behavioral health- and standard medical-related care as well as to services that happen to be provided outside an IMD to a current IMD resident.[5]

A New Model of Care: The Combined Impact of the IMD Exclusion and Deinstitutionalization

The IMD exclusion was designed to shift the cost of psychiatric care from the federal government to the states as well as discourage the treatment of mental illness via large institutional settings like long-stay state psychiatric hospitals.[6] The enactment of the IMD exclusion coincided with and likely helped accelerate deinstitutionalization, the movement popular in the 1950s and 1960s to redefine mental health treatment, with the intent of replacing care in long-stay psychiatric facilities with community-based care. This marked shift in perspective regarding the best approach to treating mental health issues and the subsequent change to the accepted model of care was aided by the development of first-generation antidepressant and antipsychotic medications.

For context, between 1970 and 2018, the number of state psychiatric beds decreased by 84% across the US, though these losses have been offset to a small degree by the increase in private psychiatric hospital beds in recent decades.[7] Currently, the US has approximately 12 state psychiatric hospital beds per 100,000 people compared to nearly 340 beds per 100,000 in the mid-1950s.[8] This drastic decrease in the number of beds available in state psychiatric hospitals reflects the historical reliance on institutionalization juxtaposed against the current focus on providing more community-based care.

Impact of the IMD Exclusion

It is estimated that more than 14 million American adults suffer from severe mental illness (SMI) such as bipolar disorder or schizophrenia that significantly interferes with their ability to partake in major life activities and sometimes requires hospitalization.[9] Approximately one-quarter of US adults living with SMI are covered by Medicaid.[10]^,[11] The IMD exclusion thus holds the potential to impact the care received by the approximately 3.6 million adult Medicaid enrollees living with SMI (see Figure 2).

The very nature of the IMD exclusion has created significant barriers to care, with its critics deriding it as discriminatory because it can prevent Medicaid patients with severe mental illness from being able to access the full range of treatment options they may need, specifically inpatient behavioral health services. This exclusion is the only aspect of federal Medicaid law that prohibits payment for medically necessary services simply due to the facility type providing the care.[12]

The impetus behind the move to deinstitutionalize mental health patients was noble in many ways, grounded in a desire to treat people with greater humanity; however, cost saving considerations cannot be ignored as a driving force behind the movement. Regardless of the motives, the implementation was flawed, chiefly because the community-based care infrastructure was simply not robust enough to support the nation’s mental health needs (and many would argue that it is still not robust enough).[13] As a result, many patients discharged from state mental hospitals were simply relocated to other institutional acute care settings, diverted to the criminal justice system, or directed to homeless shelters, an outcome that is indicative of a community-based system ill-equipped to serve this vulnerable patient population.[14] It is estimated that up to one third of those incarcerated and up to 25% of the homeless population has a serious mental illness, compared with 6% of the general population (see Figure 3).[15]^,[16]

The flawed implementation of the deinstitutionalization movement that the IMD exclusion helped accelerate is also apparent when examining the availability of inpatient psychiatric beds state by state. Nearly one-third of states provide fewer inpatient beds than the estimated need. [17] While the IMD exclusion is not the only contributing factor to the state-level mismatch between inpatient bed supply and demand, it likely plays a contributing role in the undersupply of beds (weighted for relative state population) evident in states such as Illinois, Michigan, Ohio, and Wisconsin, among others. A 2020 Government Accountability Office (GAO) survey found that 47 of 50 state Medicaid officers reported that the exclusion impedes their ability to provide the full continuum of care, including the provision of sufficient bed capacity (see Figure 4).[18]

The IMD exclusion is one of the key drivers behind the “boarding” problem plaguing hospitals where patients with psychiatric symptoms are admitted to a hospital, but left in the emergency department, for example, because no suitable psychiatric care beds are available. In a 2008 survey of 328 emergency department directors conducted by the American College of Emergency Physicians, nearly 80% reported boarding psychiatric patients; the number of public psychiatric beds has declined since the time of that survey, likely exacerbating the boarding problem.[19]

Ways to Navigate Around the IMD Exclusion

During the last decade, certain avenues have become available for states to secure reimbursement for care provided in an institution for mental diseases. For example, states have leveraged IMD exclusion workarounds such as the use of “in lieu of” authority to access federal Medicaid funds to cover IMD inpatient services in those states with capitated managed care delivery systems or the use of lump sum disproportionate share hospital (DSH) payments to help cover uncompensated care at IMDs.[20] Additionally, between October 2019 and September 2023, an additional option was made available to states under the 2018 Substance Use Disorder Prevention that Promotes Opioid Recovery and Treatment for Patients and Communities (SUPPORT) ACT. This state plan option provided up to 30 days of coverage over a 12-month period for adult Medicaid enrollees with at least one substance use disorder (SUD) treated at an IMD.[21]  

Furthermore, the Affordable Care Act established a pilot program—a section 1115 demonstration in Medicaid parlance—that removed the exclusion for certain facilities to assess whether reimbursing psychiatric services provided in an IMD setting could deliver improved care at a decreased cost. The demonstration proved successful and in 2016, the Centers for Medicare & Medicare Services (CMS) finalized a rule that allows Medicaid managed care organizations (MCOs) to receive federal reimbursement for short-term care (e.g., less than 15 days per month) provided to non-geriatric adults in IMDs.[22] However, it is important to note that the section 1115 demonstrations are often time-delimited and state-specific and thus, do not provide a long-term solution to the IMD exclusion.

Looking Ahead

While such exemptions to the IMD exclusion have proven helpful in recent years, too many people suffering from chronic and acute mental illness still cannot access the care they need. Since the exclusion is codified in the federal Medicaid statute, an act of Congress would be required to either eliminate or otherwise make any changes to it such as increasing the bed limit so that the regulation would no longer apply to larger facilities. There has been an uptick in legislative activity related to the IMD exclusion in recent years, with ten bills introduced that would either fully repeal the exclusion or amend it in some way during the past two Congresses, providing some hope that a meaningful change to this discriminatory rule is on the horizon.[23]

The removal of the IMD exclusion would significantly impact the federal Medicaid budget. The Congressional Budget Office (CBO) estimated that eliminating the IMD exclusion would increase federal expenditures by approximately $38 billion between 2024 and 2033, though some of this outlay would likely be offset by decreased emergency department and general hospital inpatient spending.[24] The state dollars previously spent on emergency and inpatient care could be reallocated to support the expansion of community-based services.[25] The CBO also projected that it would cost between $155 million and $560 million on net to make the SUPPORT Act state plan option a permanent fixture over the same ten-year period; the range of estimates reflects multiple implementation pathways for making the state plan option permanent.[26]

Eliminating the exclusion or amending it in a substantive way would not only remove a discriminatory policy from the Medicaid program, but also would effectively eradicate a key barrier to accessing mental healthcare that disproportionately impacts more vulnerable patient populations. It is important to note that if the IMD exclusion is overturned, providers would likely need to add capacity to ensure that the barrier to access does not simply evolve from one that is legislative into one that is infrastructural. Though the budgetary impact must be considered, many experts in the field firmly believe that eliminating the IMD exclusion and enabling states to more easily access federal Medicaid funds for inpatient mental health and substance use treatment could help successfully address a barrier to accessing care and greatly improve the overall health and wellbeing of people living with mental illness.[27] 

Read Part One

Notes

[1] Gunja, Munira Z. et al., “US Health Care from a Global Perspective, 2022:  Accelerating Spending, Worsening Outcomes,” January 31, 2023, https://www.commonwealthfund.org/publications/issue-briefs/2023/jan/us-health-care-global-perspective-2022#:~:text=Since%20then%2C%20spending%20has%20slowed,as%20the%20average%20OECD%20country.

[2] “Program History,” Centers for Medicare & Medicaid Services, Accessed January 5, 2024, https://www.medicaid.gov/about-us/program-history/index.html#:~:text=Authorized%20by%20Title%20XIX%20of,coverage%20for%20low%2Dincome%20people.

[3] “Budgetary Effects of Policies to Modify or Eliminate Medicaid’s Institutions for Mental Diseases Exclusion,” Congressional Budget Office, April 2023, https://www.cbo.gov/publication/59071#:~:text=Under%20a%20policy%20known%20as,certain%20types%20of%20inpatient%20facilities.

[4] “Payment for services in institutions for mental diseases,” Medicaid and CHIP Payment and Access Commission, Accessed June 5, 2023, https://www.macpac.gov/subtopic/payment-for-services-in-institutions-for-mental-diseases-imds/.

[5] Eide, Stephen and Gorman, Carolyn D., “Medicaid’s IMD Exclusion:  The Case for Repeal,” February 23, 2021, https://manhattan.institute/article/medicaids-imd-exclusion-the-case-for-repeal#notes.

[6] “The Psychiatric Bed Crisis in the US:  Understanding the Problem and Moving Toward Solutions,” American Psychiatric Association, May 2022, https://www.psychiatry.org/getmedia/81f685f1-036e-4311-8dfc-e13ac425380f/APA-Psychiatric-Bed-Crisis-Report-Full.pdf.

[7] Lutterman, Ted, “Trends in Psychiatric Inpatient Capacity:  United States and Each State, 1970 to 2018,” National Association of State Mental Health Program Directors Research Institute, September 2022, https://www.nasmhpd.org/sites/default/files/2023-01/Trends-in-Psychiatric-Inpatient-Capacity_United-States%20_1970-2018_NASMHPD-2.pdf.

[8] “The Psychiatric Bed Crisis in the US:  Understanding the Problem and Moving Toward Solutions”.

[9] “Mental Illness,” National Institute of Mental Health (NIMH), March 2023, https://www.nimh.nih.gov/health/statistics/mental-illness.

[10] Zur, Julia et al., “Medicaid’s Role in Financing Behavioral Health Services for Low-Income Individuals,” Kaiser Family Foundation, June 2017

[11] McMullen, Erin K. and Roach, Melinda Becker, “Behavioral Health in Medicaid,” MACPAC (Medicaid and CHIP Payment and Access Commission), Sept. 24, 2020.

[12] “Medicaid: IMD Exclusion,” National Alliance on Mental Illness, Accessed February 6, 2024, https://www.nami.org/Advocacy/Policy-Priorities/Improving-Health/Medicaid-IMD-Exclusion.

[14] “The Psychiatric Bed Crisis in the US:  Understanding the Problem and Moving Toward Solutions”.

[15] Ornstein, Norm and Leifman, Steve, “Locking People Up is No Way to Treat Mental Illness,” May 30, 2022, https://www.theatlantic.com/ideas/archive/2022/05/mental-illness-treatment-funding-incarceration/643115/.

[16] “Mental Illness and Homelessness,” National Coalition for the Homeless, Accessed June 2023, https://www.nationalhomeless.org/factsheets/Mental_Illness.pdf.

[17] González-Caballero, Juan Luis et al., “Benchmarks for Needed Psychiatric Beds for the United States: A Test of a Predictive Analytics Model,” International Journal of Environmental Research and Public Health, November 2020, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8625568/#B1-ijerph-18-12205.

[18] “Medicaid:  State Views on Program Administration Challenges”, Government Accountability Office, June 2020, https://www.gao.gov/products/gao-20-407#:~:text=Officials%20from%2027%20states%20identified,payments%20than%20for%20other%20providers.

[19] Eide, Stephen and Gorman, Carolyn D.

[20] Musumeci, MaryBeth et al., “State Options for Medicaid Coverage of Inpatient Behavioral Health Services,” Kaiser Family Foundation, November 6, 2019, https://www.kff.org/report-section/state-options-for-medicaid-coverage-of-inpatient-behavioral-health-services-report/.

[21] Houston, Megan B., “Medicaid’s Institution for Mental Diseases (IMD) Exclusion,” Congressional Research Service, October 5, 2023.

[22] “The Medicaid IMD Exclusion and Mental Illness Discrimination,” Treatment Advocacy Center, August 2016, https://www.treatmentadvocacycenter.org/component/content/article/220-learn-more-about/3952-the-medicaid-imd-exclusion-and-mental-illness-discrimination-.

[23] Houston, Megan B.

[24] Budgetary Effects of Policies to Modify or Eliminate Medicaid’s Institutions for Mental Diseases Exclusion,” Congressional Budget Office, April 2023, https://www.cbo.gov/publication/59071#:~:text=Under%20a%20policy%20known%20as,certain%20types%20of%20inpatient%20facilities.

[25] Musumeci, MaryBeth et al.

[26] Budgetary Effects of Policies to Modify or Eliminate Medicaid’s Institutions for Mental Diseases Exclusion.

[27] Ibid.

Notes

Kim Langenhahn draws on more than 15 years of consulting, operational, and startup experience in the domestic and international health and nonprofit sectors to help organizations navigate complex issues, operate more effectively, and deliver greater impact. During the course of her career, Kim has helped numerous healthcare organizations tackle a variety of strategic challenges such as scaling Terrapin Pharmacy’s remote medication adherence system, launching a MENA-focused healthcare incubator, devising system-wide strategy for the Saudi Arabian Ministry of Health as part of PwC’s consulting practice, and developing a market forecast for a pharmaceutical company alongside her L.E.K. Consulting colleagues.  She is also the Cofounder of a small social enterprise that she runs with her family

Kim earned a Master of Business Administration and a Master of Public Policy from the University of Chicago as well as a Master of Science in Quantitative Management and a Bachelor of Arts from Duke University.  An avid traveler, reader, bread baker, ice cream churner, and (aspiring) cheese maker, she also enjoys helping her husband tend to their rooftop garden and vermiculture operation.  She currently resides in Washington, D.C.

As Camber Collective’s Director of Impact and Equity Rozella Kennedy helps direct the firm’s internal Impact, Equity, and Belonging work as well as the external practice. Her theory of impact seeks to leverage equitable values to influence and impact the humanitarian, development, philanthropic, and social impact sectors. The long focus is to expand awareness and practice in local and global post-colonial contexts. Rozella is also the creator of Brave Sis Project, a lifestyle brand using narrative and social engagement to uplift BIPOC women in U.S. history as a tool for learning, growth, celebration, and equity allyship; her book “Our Brave Foremothers: Celebrating 100 Black, Brown, Asian, and Indigenous Women Who Changed the Course of History” was published by Workman Press in Spring, 2023.

In 2022, Camber began working alongside City of Hope to envision a robust model for supportive care services that provides comprehensive whole-person care for patients undergoing cancer treatment such as physical, practical, emotional and psychological, social, educational, and spiritual supports. We had the opportunity to build on that work in 2023, collaborating with the client to strategize how to potentially leverage technology to extend the supportive care services model beyond the City of Hope ecosystem

One of the key objectives of the project revolved around expanding supportive care access to underserved populations who face systemic socioeconomic, racial, or geographic barriers to care and often suffer inequitable and subpar health outcomes as a result. Such inequitable outcomes serve to compound the myriad injustices that typically characterize the under-resourced members of our society.

As a first step in exploring how to expand access to City of Hope’s supportive care model to all those in need, especially the underserved, Camber launched an extensive primary research campaign revolving around three key activities—convening an Advisory Board comprising supportive care subject matter experts; fielding a survey of cancer patients; and conducting focus groups with cancer patients, survivors, and caregivers. While the strategic insights gleaned from the Advisory Board meetings, we facilitated were invaluable, it was imperative to balance the insights garnered from those who operate from a place of authority with those affected by cancer as patients and caregivers who often do not have a guaranteed seat at the table.

Camber thus placed great emphasis on ensuring that the content, structure, and delivery of the survey and focus groups was considerate of the circumstances of cancer patients, survivors, and caregivers as well as designed to generate a deep understanding of a diverse set of needs. Given the sensitive nature of our primary research topic—living the cancer journey, from diagnosis to hopeful remission—we collaborated closely with the client to craft survey and focus group questions using appropriate and respectful language that provided the space for authentic sharing. To include the voices of non-English speakers, we worked alongside City of Hope to translate questions into Spanish; though Camber is cognizant that cancer is not limited solely to Spanish and English speakers, these two languages combined are spoken at home by ~90% of Americans. Finally, we sought to ensure that survey and focus group participants were representative of the US cancer population, especially with regards to their geographic, financial, and racial/ethnic backgrounds.

Camber leveraged everything we learned from the survey and focus group participants to better understand the different barriers preventing people from benefiting from supportive care services as well as which services should be prioritized. We utilized this nuanced understanding to develop the overarching model for a digital supportive care services tool expressly designed to mitigate access barriers and provide those services deemed most in need and/or most impactful by our primary research participants. Our recent work with City of Hope reinforced the importance of employing an intentional approach to understanding and addressing health inequities that not only elevates the voice of those most impacted, but also is cognizant of the historical and social roots of those inequities—and the Camber US Health team is excited to continue to further build out and refine this approach through our 2024 project work.

Part Two: The Basics, and the Basic Problem

This is Part Two of a conversation between our Director of Impact and Equity Rozella Kennedy and our Director of US Health Kim Langenhahn on US healthcare in our “post-pandemic” moment: the legacy challenges, the current tragic clashes around untreated mental health episodes in public spaces, as well as the current wave of innovation and opportunity that might, if leveraged and supported, help us move towards equitable, quality healthcare more broadly for more people living in the United States.

Part One of this conversation serves as a wide-ranging exploration of the overarching impact that the mixed nature of the US health insurance system, which is comprised of a combination of private, public, nonprofit, and for-profit entities, has on our society and overall well-being. This rather fragmented approach to health insurance, and subsequently to the provision of care, combined with the fact that the profit motive is woven into most aspects of the US system, means that people—especially the most vulnerable—are often left behind. For example, the recent expiration of protections put in place during the pandemic public health emergency means that millions of people may lose Medicaid coverage, either due to administrative reasons or because they no longer qualify for the program—and this anticipated loss of coverage will disproportionately impact Black and Hispanic beneficiaries. Click here to read Part One.

Unfairness At a Breaking Point

Rozella Kennedy: We took a break in the conversation at a point where I was feeling very heated about what almost feels like a “gotcha” for some folks to access healthcare entitlements like Medicaid. I hate to realize it really comes down to the ability to correctly execute paperwork!

Kim Langenhahn: It does become largely an issue of time, paperwork, and resource and knowledge constraints for far too many people. Just imagine if the next time they show up at a doctor’s office they risk being told, “You actually can’t see the doctor today because you didn’t fill out this form or you didn’t fill it out appropriately or in the right time frame.”

RK: Goodness! The NY Times recently ran a long feature article about the treacherous tangle of paperwork and poor public health outcomes. It depicted the healthcare access challenges of indigenous people in Colombia, South America. But we literally are not much better off, for some communities!

KL: I want to say to the healthcare conglomerates and the government: I understand you’re running a large system. But at the end of the day, someone’s access to care should not depend on filling out a form properly.

RK: Doctors take a Hippocratic Oath, for heaven’s sake! This is actually just heartbreaking to consider. And since we are in this very honest and stark phase of our conversation, let’s add one more tragic health equity factor: the dearth of provision and stigma around mental health.

Two incidents made the national news about the deadly clash of mentally instable people and so-called vigilante citizens. One was the street performer in the New York subway Jordan Neeley, and the other that has haunted me is the death of Banco Brown, trans activist who went into a San Francisco Walgreens attempting to steal food and was shot to death by a private security guard.

Now, I’m going to connect the dots here, from the point of view of equity and justice. These two Black men were hungry, they were desperate, they were distressed, they seemingly were having a psychotic breakdown moment. And they are now dead. Ours should not be a society that punishes our most desolate.

I hate to think of young Black bodies once again becoming martyrs for a cause, but maybe public awareness is starting to shift, because this is just so never-ending and sorrowful and wrong.

There has been so much outrage and compassion for these two people in society. It felt to me like finally more of the public are saying, “wait, this system isn’t serving people, and our mental health crisis should be treated as a health issue, not one of criminality.”

KL: Public health absolutely encompasses mental health, yes.

RK: And if we talk about narrative for a moment, it’s not just the “homelessness” story we have become used to: say, the returning veteran suffering with PTSD and falling into despair, or someone who escaped a violent situation and can’t get into Section 8 housing, or a person who lost everything due to illness or divorce or a death, or a SGM (sexual and gender minority) youth whose family kicked them out of the house—you know, these are the stories we’ve somewhat gotten used to hearing about homelessness and particularly episodes of people suffering mental health breakdowns in plain view. That’s horrendous enough in our society.

But in some circles, there is a growing awareness that people become marginalized and imperiled not only because of circumstances (usually beyond their control), but also because of systems. Folks are saying, “You know, we’re going to acknowledge how epigenetic trauma creates depression, anxiety, and other forms of mental illness. We’re going to see that centuries of actions have led to deep, deep despair and the need for repair…

“We’re gonna amplify the connections between limited or poor healthcare; the built environment and heat islands; historic redlining and Jim Crow-era economic immobility; the war on drugs and how AIDS, the pandemic, and fentanyl have disproportionately targeted ‘the wretched’ of our earth,” to reference Frantz Fanon, if I may!

It’s encouraging to see people taking a bolder attitude towards acknowledging that mental health and machismo are not the same thing, and that the stigma needs to be eradicated. Folks need help. People are demanding better.

A Few Ways Out of the Morass

RK: So, now that I’ve gotten that off my chest, what should be do? What can we, as people do, to help fix this broken healthcare system?

KL: I would truly say at the individual level the most powerful thing we can do is educate, advocate, and vote. We all have a voice, and we need to use ours to make sure we have people in office who support the idea that quality healthcare is a human right. I mean this not only at the federal level by the Centers for Medicare and Medicaid Services.

To be honest, the right political leadership is even more significant at the municipal level and the state level because that’s where Medicaid policy is being set for the most part—these are the entities that are actually administering the state Medicaid programs. And as individuals, we need to advocate for the causes and the politicians that represent what we believe in. We have to do all we can to get them in office.

RK: Oftentimes even people who are relatively politically engaged don’t vote in all their local council elections…

KL: … and that’s where many of the most significant policies for people’s lived experience, from healthcare to schools to trash collection and local taxes are being implemented.

Another thing: the local forum is an important laboratory or testing ground for politicians, PACs (Political Action Committees) and major campaign donors, and advocacy groups. By this I mean, these stakeholders often have eyes on state-level offices, so to get a sense of how they act locally is very important in this two-way street of electoral politics; how do they intend to move “upstream” as it were?

Reminding us all to stay engaged, especially locally, is good advice because so much of electoral politics and voting at the state and certainly federal level has also devolved into a popularity contest or beauty pageant. It’s off-putting, and we are all so tired of so much of it. But we have to stay focused, right? An informed and engaged populace has a lot of power to shift many kinds of inequities.

KL: If we stay attentive and active.

RK: I am reminded of the shock many of us felt when Roe was struck down last year. Mostly to steel myself, I jumped on a Zoom with two of our colleagues and we held a video chat in which we were able to share our feelings and recall many of the positive reproductive health work Camber has helped shore up for our clients over the years, but also we cited a bunch of resources: nonprofits and other groups that people could get involved in and support as donors, volunteers, advocates. Are there some innovative organizations you’d like our readers to know about that are advocating for access to quality, equitable healthcare?

KL: Yes, let’s share a few here. (See “resources” at bottom of this post.)

Facing Facts and Keeping Faith

RK: Thank you! I think it’s wonderful that Camber can be this bridge between thought-leadership and strategy and encouragement for the people.

Because these issues of health equity are so all-encompassing, they touch upon everything, and it gets overwhelming and can almost feel debilitating. But speaking of encouragement, let me ask you from a policy or thought leadership perspective, what do you see that is encouraging in this moment, if anything at all?

KL: Yes, I do think there are things to be encouraged by. Over the last couple of years, a tiny silver lining that came out of the pandemic is that you had more and more people really start to authentically grapple with, and truly acknowledge, just how many existing systems in our country prevent people from living full lives.

RK: Can you say more?

KL: It used to feel much more like lip service. But I think there is a core group of people that are more empowered to try and upend some of these inequitable systems and there are more people who are just now coming to terms with the reality of how skewed and broken so much of this is.

I’m seeing a greater recognition of the power structures and the racist histories and how those factors conjoin to impact people, historically as well as right now.

RK: This hearkens back to what we were saying about health inequity not being entirely a Black/white issue…

KL: This is true—though we cannot deny that redlining and workforce discrimination have played enormous roles in economic inequity and health outcomes disparity, over generations.

RK: Enslaved Black people were legally not allowed to learn to read, marry whom they wanted, and in many instances, didn’t even have a “real” name. We cannot of course, discount the enormous historic harms done to Asian people through legislated discrimination and internment, or to our Indigenous brothers and sisters, whose lands and lives were literally stolen by colonialism. It’s a very bad legacy.

KL: When you look at the data around health outcomes, the throughlines are clear. The neighborhoods and zip codes with the worse health outcomes have a higher propensity to be non-white, but sadly, there are also some universal constants that transcend racial lines and just simply come back to poverty. Fewer economic resources, larger proportions of major chronic health issues.

RK: A generalized need for a social safety net.

KL: And because some elected officials are finally recognizing that their constituents’ needs are not being met, there is a glimmer of good news. In the last couple of years, more states have begun to expand or consider expanding Medicaid under the Affordable Care Act.

RK: Thank God(dess)!

KL: We now have 40 states plus DC with expanded Medicaid coverage. So yes, there are still ten states that need to do so. But there is a little more momentum.

RK: Expanding Medicaid is not a panacea, but it is a huge step in the right direction.

KL: I was looking at some of the recent reporting around maternal health and especially mortality rates for Black mothers, and it found that there are some genetic drivers for the high Black maternal mortality rates, but at the end of the day a lot of that excessive mortality results from lack of insurance and lack of access to care.

There Really is No “Us” and “Them”

RK: I often say if Serena Williams and Beyoncé could not access considerate healthcare during their pregnancies, what hope do the rest of us have?

KL: Again, this is all part of the structural problem we’ve been discussing. While maternal mortality rates have increased pretty steadily over the last two decades, those increases have been smaller in states that have expanded Medicaid, with greatest impact being on Black mothers. It largely comes down to simply having access to better care, or care at all.

RK: I don’t like to put it in these terms exactly, but one could zoom way out, with a historical lens, and surmise one of the positive outcomes of the George Floyd moment is the awakening around racism and normalizing white comfort and prosperity to the detriment of people of color, just across so many systems. The situation may not be as stark as outright “white supremacy,” but it was a sense of erasure, ignoring, making people feel like they are “less,” and expecting even less than that.

And we are shaking off this general sense of “laissez faire” among the populace, writ large. I often say that we have been lulled into consumerist complacency over the past six or seven decades: If you could eat a fun dinner and your favorite show is on TV, you’re good—and there’s nothing else in the world you need to worry about. That became sort of the prevailing way of American life in the 60s, 70s, 80s, 90s early aughts, right? And now people are saying “no, I don’t want to live in a society where so many of my sisters and brothers are suffering.”

The journalist and social commentator Annie Lowrey speaks of something she calls “the time tax,” this fact that if you’re a privileged person, you can hire a PA or pay for an app to take care of all your nonsense paperwork, but for most of the people, and it gets worse the less economic agency you have, it’s a nightmare.

KL: Not to mention if you’re higher up the privilege ladder, your paperwork is sometimes less complicated, which is a bit counterintuitive.

RK: How about that? Look at something as essential as signing up for food stamps. In some states it’s an obstacle course. Hunger and food are health issues too.

KL: They really are.

RK: And people who are outside of the sphere of high privilege, who, as you said, don’t have autonomy over their day, it can be a struggle to even access these benefits, one of which almost everyone in the country agrees is important and positive—food assistance.

Food is Healthcare

RK: Kim, can you talk a little bit about food and hunger and how they correlate to the health crisis in this country at the systemic level?

KL: Isn’t it interesting how many tentacles there are to what constitutes “health”? Yes, absolutely, let’s talk about food and hunger to wrap up our conversation.

Let’s start with young children and health and social outcomes related to food and nutrition. So many young kids are hungry, either because they don’t have access to as much food as they need, or the food they have access to is calorie dense but nutrient poor. These young people face so many challenges as a result of malnutrition—they have a harder time paying attention in school and greater difficulty understanding the material, they have more behavioral issues in school, they are more likely to be pulled out of class or get a detention. They may not even have the energy to play, which is an important part of childhood development.

RK: A stunning book about this I read described how much bias there is against Black girls in this particular area. It’s striking.

KL:  Yes, it’s disgraceful. And you know, Rozie, no matter who the kid is, they end up propelled into a negative spiral. They miss learning time because they are being subjected to carceral treatment. Or even if they are in still in the classroom, they are diminished: when you’re hungry, you can’t pay attention, especially as a child.

RK: Even at very young ages, the hungry kid is already disadvantaged compared to the well-fed one.

KL: And those discrepancies and disadvantages persist throughout the rest of that child’s life. It will be nearly impossible for them to catch up academically to their well-fed peers.

They are generally always going to be behind, less likely to graduate high school, less likely to pursue college. Also, they are less likely to receive technical training if they want to go the trades route. This leads to a population that is less likely to attain solid employment, less likely to access stable housing.

RK: If this child grows to adulthood and remains in a position where it is difficult to feed themselves well, what happens when they have children? The cycle repeats itself for another generation.

KL: Glance away from children for a minute and think about adults in general in our society. We have so many food deserts and food swamps: where there is a lack of access to healthy, fresh, nutrient dense food. Or for some, there is not the time to go and purchase healthy food and prepare a meal at home.  

RK: Yes, those food-box apps are so alluring—and very few people I know, including myself, would fit that in their budget, even if they could. Not as a sustainable solution, maybe a novelty.

KL: So, when you don’t have the time and the resources, you know what? You’re eating fast food. And this leads to so much of the population dealing with the lifestyle diseases: higher rates of diabetes, high blood pressure, all of these comorbidities that then make it nearly impossible for them to live healthy lives.

RK: It starts to feel pre-destined.

Connecting the Dots and Finding Hope

KL: As we’ve said, more and more people are connecting the dots.

RK: Back in the mid-aughts, I served as the coordinator of the New Mexico Hunger Task Force when I was living in Santa Fe. And at the time, New Mexico was the Number Two state in the nation in terms of food insecurity. Our goal was to get to #5, and I think they did do it.

Be that as it may, during that time, I worked with several people in public health as well as agriculture and education. And the effort was intersectional before that was a common term, and it was grassroots and communal. One friend who is at UNM School of Medicine as an anthropologist, actually, is engaging foodways and culture, to excite Hispanic (in that region, many people prefer this term to Latino) women—some immigrant or recent arrivals, others going back ten generations to when New Mexico was old Mexico—around food, health, resilience, and pride. They are using sisterhood and mutual aid as interesting ways to weave it together. Cultural pride in eating the food of their ancestors.

KL: That’s absolutely a positive approach.

RK: Can I say one more thing? I see this progressive attitude playing out in the Black community too with this neo-vegan hipster moment.

I think pop culture can be such a mover; I’m thinking of people like Stephen Satterfield and his Whetstone publishing entity and streaming show “High on the Hog,” I see it a lot with Black Veganism too. It’s interesting because they are connecting food to health as well; getting away from sodium, fried food, processed “foodstuffs.”

We are seeing this cultural shift in the Latinx and Asian communities too, as well as in African and Caribbean food culture: after generations of high-sodium spices and “flavor enhancers” marketed as culturally relevant, folks are looking at the health outcomes and saying “enough.” Give us healthy food, pure food, stop selling us poison. It’s related to climate and environment as well, of course.

I know that was quite a side-road I took us on there! But it feels related. That’s one thing I love about working at Camber, we really lean into the sectoral interconnections when it comes to equity and well-being.

KL: It is something to be proud of. I’d say a good thing that came out of the pandemic was that more people began to understand how interrelated everything is. You cannot be a healthy person if you don’t have access to food and safe affordable housing and a minimum standard of living. You just can’t.  But you also can’t excel in school or life if you don’t have access to healthcare. So, it’s all related.

And you most certainly cannot be your healthiest self when living within social and healthcare systems built around bias and discrimination. For example, the telomeres that cap the ends of chromosomes and help protect the genome from degradation are shorter in marginalized populations, leading to premature biological aging and the early onset of many chronic diseases.

In fact, Rozie, if we just focus on the medical side of healthcare, we are missing the majority of the drivers that actually dictate whether you are able to lead a healthy, fulfilled life—those so-called external social determinants of health often impact one’s overall state much more than the classic medical treatments and doctor’s visits we associated with “healthcare”.

More and more people and organizations are recognizing this. Even at governmental levels.

I’ll leave you with this, which is also encouraging: CMS, or the Centers for Medicare & Medicaid Services, has created some new coding opportunities within Medicare and Medicaid to try to help provide guidance and reimbursement for access to things like transportation to the grocery store.

RK: Kim, that’s really great! The old hunger coordinator in me is cheering this! In New Mexico, some folks had to go sixty miles just to get to the big box store, so they got most of their “food” at convenience stores and gas stations…

KL: Another exciting possibility around innovation is the fact that entrepreneurs can often work faster than government policy can be designed and implemented, so we are seeing innovative entrepreneurs and nonprofits trying to address things like food scarcity and other social determinants of health.

They’re asking questions like: “How do you innovate the care model to make it more equitable to increase access and help to address some of those disparities that are baked into the system?”

RK: Woah, they might actually be making capitalism work for the betterment of the populace, and not just the financial elite!

KL: That’s right. Capitalism is still today’s system, but if used effectively, it can be part of the solution.

RK: Basically, it’s just a question of “don’t be greedy.”

KL: Basically, yes.

Resources

• United States of Care – Building a Better Health Care System
• Alliance for Health Policy – Join the Conversation (allhealthpolicy.org)
• CityHealth – Every person, in every city, deserves a healthy life
• Trust for America’s Health (tfah.org)
• Home – HealthTech 4 Medicaid (ht4m.org)
• Grantmakers In Health – Better health for all through better philanthropy (gih.org)
• Lutheran Services in America
• Health Care Access Maryland – Making Maryland a Better Place to Live

Kim Langenhahn draws on more than 15 years of consulting, operational, and startup experience in the domestic and international health and nonprofit sectors to help organizations navigate complex issues, operate more effectively, and deliver greater impact. During the course of her career, Kim has helped numerous healthcare organizations tackle a variety of strategic challenges such as scaling Terrapin Pharmacy’s remote medication adherence system, launching a MENA-focused healthcare incubator, devising system-wide strategy for the Saudi Arabian Ministry of Health as part of PwC’s consulting practice, and developing a market forecast for a pharmaceutical company alongside her L.E.K. Consulting colleagues.  She is also the Cofounder of a small social enterprise that she runs with her family

Kim earned a Master of Business Administration and a Master of Public Policy from the University of Chicago as well as a Master of Science in Quantitative Management and a Bachelor of Arts from Duke University.  An avid traveler, reader, bread baker, ice cream churner, and (aspiring) cheese maker, she also enjoys helping her husband tend to their rooftop garden and vermiculture operation.  She currently resides in Washington, D.C.

As Camber Collective’s Director of Impact and Equity Rozella Kennedy helps direct the firm’s internal Impact, Equity, and Belonging work as well as the external practice. Her theory of impact seeks to leverage equitable values to influence and impact the humanitarian, development, philanthropic, and social impact sectors. The long focus is to expand awareness and practice in local and global post-colonial contexts. Rozella is also the creator of Brave Sis Project, a lifestyle brand using narrative and social engagement to uplift BIPOC women in U.S. history as a tool for learning, growth, celebration, and equity allyship; her book “Our Brave Foremothers: Celebrating 100 Black, Brown, Asian, and Indigenous Women Who Changed the Course of History” was published by Workman Press in Spring, 2023.

Part One: The Basics, and the Basic Problem

With the recent Congressional and Presidential declaration that the Covid emergency “has ended,” there remain a lot of questions and confusion about what Americans can expect, and about how our healthcare system operates in general. Our Director of Impact and Equity Rozella Kennedy sat down with our Director of US Health Kim Langenhahn for a far-reaching conversation about US healthcare and its many facets, angles, deficits—but also opportunities and bright spots in the quest to provide equitable, quality healthcare more broadly to people living in the United States. This is a jam-packed conversation, so we will parse it into two parts. Enjoy Part One, where we look at the “end of the pandemic,” and some general facts, figures, and frustrations about US healthcare as it currently is delivered. Part Two will dive more into issues around (in)equity and how societal shifts are pointing towards some possible encouragements.

US Healthcare 101

Rozella Kennedy: So, to start off this conversation Kim, can you provide a high-level description of what healthcare access actually is in our country?

Kim Langenhahn: Sure. Knowing that no national healthcare system is perfect, we could start with a comparison and contrast. When you think about a place such as the United Kingdom, they have a single-payer system, with care provided through government-based providers. That leads to one holistic system that ostensibly covers everyone’s healthcare needs in the country.

RK: Ostensibly.

KL: Right. While some people may fall through the cracks, the structure lends itself to greater simplification and less of that kind of risk.

Now on the other hand, when you think of the US, it’s really a mixed system. We have a combination of private insurance, with some of those insurers being nonprofit, and others for-profit. Add to that the government, which covers some forms of public insurance, it’s quite complex.

When it comes to private insurance, a majority of the people in the US—I’ve seen data that says at least half of the people—get their coverage through an employer-based insurance program.

And there are even more layers of complexity to contend with. Small businesses often do not, or cannot, offer insurance. Many employers provide coverage that does not meaningfully meet the actual needs of the employees at all.

RK: Entrepreneurs have to cover themselves, which makes it extremely difficult to launch a successful business or start-up.

KL: That’s right. And even among the half of insured people who receive coverage through their employer, there are so many people who do not have access to those types of jobs. The fortunate among them may find they can be covered through a government program like Medicare or Medicaid.

RK: Oh, so there is a safety net!

KL: Not so fast. Those systems are really fragmented, particularly Medicaid. The money for this entitlement comes from the federal government, but each state creates its own laws and policies and regulations, and each state runs its own Medicaid systems.

Let’s Get into Dollars and Sense

RK: States’ rights. The lottery of location.

KL: Compounded with the market-based core of the American society, we are left with a system that has lots of gaps and leaves lots of people behind.

RK: Connecting healthcare to money and maximizing profit seems to invite cost-cutting, price gouging, and other practices—all on the backs of healthcare patients.

KL: This is a sad fact. And we live in a nation whose organizing economic principle is capitalism. I am not saying capitalism is inherently evil, but the way we give it primacy and the way that we do not do a good job of regulating and putting in guardrails from government, that’s where things get problematic.

RK: I’m old enough now to remember when there was a safety net, flawed or not, in the tradition of FDR’s Great Society, fortified by LBJ—and decimated, by design, during the Reagan years. I personally heard the stump speeches where he said the nine most terrifying words in the English language were: “I’m from the government and I’m here to help.”Many of us are aware that it has been a decades-long plan to diminish federal government services. The outcome is this fragmentation, complexity and too many people falling between the gaps. Many of the people working in health equity arena say this is deliberate.

Let’s talk about the “gaps” for a minute and who falls between them. We can start with the more privileged strata of society. I have good insurance coverage, but the system is so complex, because of a new doctor’s appointment I had two days before the end of the calendar year, and how my provider coded the visit, I was on the hook for some $600 and could not apply my HSA to it. I should have waited a week. I was furious!

KL: Yeah, it’s a mind game trying to navigate it all. Even if you do have the information and the resources.

RK: Paying it was an annoyance but not a catastrophe. But I couldn’t help but think about people with less-good care, or no care at all. Or who, for a variety of reasons—not just money or coverage but also negative personal or family experiences with inferior care discrimination, bias, and harm, or don’t trust the healthcare system and don’t engage in preventative care … every time there is a cold, they are in the ER.

Because they don’t have a general care provider, they don’t get checkups. I have relatives who live this way, so this is not some theoretical.

KL: There are so many ways people can be alienated from care and healthcare awareness. Not least of which from the very poorest or unhoused people, but there are also the folks who work two and three jobs, or who don’t have control over their work schedules. They have enormous constraints on their time.

So even if they do have employer-based insurance and, presumably, access to “quality care,” they’re not going to be able to just go in and see a doctor, right?

RK: And if they get to the point where they are sick enough, they go through the ER. This exacerbates this ethos of scarcity and inconvenience and panic for people who are already struggling. Emergency rooms are traumatic places! The lights, the cacophony, the long, long waits. It’s demeaning.

I really think we’re in a societal spiral of stress and sadness and lacking. It’s a tragedy, from an equity standpoint, and actually, from a humanity standpoint.

KL: Even if I could set aside the morality of ensuring people have access to those things they need to live full, healthy lives—which is not something I can actually do—there is still the economic fact that many hospitals are nonprofits operating under charity status, meaning they have to provide a certain amount of care to people who show up whether they’re insured or not.

And if the patient cannot pay, that cost is eventually paid by us, the taxpayers.

RK: It’s nonsensical. Non-cents-ical, if I could make a terrible pun.

KL: Indeed. Just consider the economic impact in terms of the increased cost and lost productivity, again, it should not pass anyone’s capitalist-efficiency standard.

The Pandemic Temporarily Tightened the Safety Net

RK: (Deep sigh.) And so, we had the pandemic, during which many healthcare protections were put into place.

There was more access to telehealth, it became easier to get prescriptions through a video call, and other benefits. And as they say, once the public has been given a benefit or entitlement, it is extremely difficult to take it away. But away some of it has gone…. Seriously, we had something close to guaranteed income for a minute, right? And as far as I know, there were no statues of Karl Marx erected anywhere…. We did not devolve into a Communist dictatorship.Can you provide for the layperson, the landscape of some of the protections that were put in place during the pandemic that are now gone?

KL: Certainly. Throughout the course of the pandemic, there were a lot of moving parts, with a lot of different legislation put in place relating to the overall well-being of the population and specifically in the health sphere. To elaborate fully would require at least a few more interviews, but one of the most notable pieces of legislation was implemented in the very beginning of the pandemic: “The Families First Coronavirus Response Act.”

This legislation provided increased federal Medicaid funding for all states, provided they followed some rules. One of these rules was a requirement to maintain continuous coverage for people within the Medicaid system.

RK: Guaranteed Medicaid?

KL: Yes. Pre-pandemic, it was up to each state to annually re-evaluate whether a beneficiary would be eligible to receive continued Medicaid benefits, a process called redetermination.

People could, and did, (and will) fall off the rolls for a variety of reasons: their contact information is no longer up to date, or they no longer meet the income thresholds, and other factors.

During the pandemic, the federal government declared: “We’re going to scrap the redetermination process. For the duration of this public health emergency, people will remain enrolled in Medicaid, no matter what.”

RK: That sounds good, making sure people don’t get kicked off healthcare because maybe they are going through other tough situations, like eviction, illness, divorce, or any other reason that might lead to contact information going awry. On top of a global pandemic that caused more than 1.1 million fatalities in the United States between 2020 and today.

KL: It was a humane response to an unfathomably frightening and chaotic public health crisis. And so, we had this moment in time over the last couple of years where people were not getting bumped off Medicaid.

And at the same time—no surprise—we had record numbers of people signing up for Medicaid. Between the beginning of the pandemic and toward the end of 2022, we had almost 21 million additional people enrolled in Medicaid. This is a very significant number.

RK: You told me at the peak, there were over 90 million Americans covered by Medicaid.

KL: Correct. Now, to be clear, some of those numbers included children who are covered by CHIP, the Children’s Health Insurance Program. But nonetheless, you saw enormous numbers of previously uninsured people getting access to healthcare coverage. This was, I think, America’s biggest step toward universal coverage.

RK: And it was good, right?

KL: So it was. It was an interesting social experiment.

RK: And we didn’t send anyone to a Gulag.

KL: No, as you said, we did not devolve into a socialist state by providing some folks additional coverage. It was, on the whole, a good thing—especially for people who are typically left out of that patchwork American system that we talked about earlier.

There Really is No “Us” and “Them”

RK: There is a subset of our population that is historically always on the losing equation of anything approaching prosperity or dignity, or even minimal service to live and thrive. We address this discrepancy in a lot of our Economic Mobility work. And when we are discussing healthcare, I think it’s important to say that this is not entirely racial. It’s not just Black people. It’s not just Brown people. I read something there are more poor white people in the United States than any other racial group.

KL: Yes, the number of white people living in poverty greatly outstrips the number of impoverished Black people. However, the percentage of Black people living below the poverty line is twice that of whites. So yes, this goes beyond the color of your skin.

RK: And it’s older people. It’s rural people, it’s disabled people. Can you give us a lens into some of the groups and untold stories that people need to be thinking about when they think about health equity in the big picture.

KL: This is an enormous topic, Rozie, but let me share at least that there is such a convergence of -isms and deficits at play.

A whole host of people are being imperiled when they don’t have access to care. The causes for this lack of access range from structural racism to lack of economic mobility to the affordable housing crisis to the expensive education system which creates a lack of access to quality education, especially when you consider the importance of early education.

We don’t have enough kids in quality early education programs and at the end of the day this creates the system where you have a group of people who are more likely to experience employment volatility or unable to get a job, among many other adverse outcomes.

RK: This relates to what we were discussing regarding people falling off the Medicare rolls for reasons that are not necessarily their ‘fault.”

KL: Correct. We have a large group of people who have trouble securing safe, affordable housing and maintaining that housing. And they are prone to have a harder time keeping their contact information up to date with government agencies, and they’re the ones that have a harder time verifying their employment and income stats.

Additionally, because of time commitments, resource constraints, even lack of access to reliable transportation, they often don’t have the time or wherewithal to fill out the paperwork or answer the necessary questions.

KL: Further, as we said, the system is full of complexity. There is certainly a good portion of this population that don’t even understand how the process works and what they should be doing to make sure that they maintain the Medicaid benefits.

RK: On a bad-attitude day, I’d almost say it is deliberate punishment of the poor.

KL: This falling off the registry is called “administrative churn,” and there’s some pretty distressing statistics related to this. When you consider that the public health emergency has been sunsetted, and that the redetermination process is once again happening, it is estimated that upwards of 18 million people could lose Medicaid coverage due to this administrative churn or no longer meeting the Medicaid requirements. 

There will likely be a differential racial impact here.  Almost half of the 18 million people projected to lose Medicaid will be Black or Hispanic, despite the fact that when combined, they comprise approximately 33% of the overall population.  And when we are talking about those most likely to lose Medicaid due solely to administrative reasons, Hispanic beneficiaries will be disproportionately impacted.

RK: It’s shocking to think we are going backwards.

KL: A number of those people will be able to secure alternate insurance through an exchange or potentially through a new employment situation. But four million or so could become fully uninsured.

Within that group of 18 million that are projected to lose Medicaid coverage, there are seven million that they are thinking will lose it purely due to this administrative churn that we just talked about. 

RK: That is not great in any way, America! Let’s take a breath here and continue this conversation next week.

Kim Langenhahn draws on more than 15 years of consulting, operational, and startup experience in the domestic and international health and nonprofit sectors to help organizations navigate complex issues, operate more effectively, and deliver greater impact. During the course of her career, Kim has helped numerous healthcare organizations tackle a variety of strategic challenges such as scaling Terrapin Pharmacy’s remote medication adherence system, launching a MENA-focused healthcare incubator, devising system-wide strategy for the Saudi Arabian Ministry of Health as part of PwC’s consulting practice, and developing a market forecast for a pharmaceutical company alongside her L.E.K. Consulting colleagues.  She is also the Cofounder of a small social enterprise that she runs with her family

Kim earned a Master of Business Administration and a Master of Public Policy from the University of Chicago as well as a Master of Science in Quantitative Management and a Bachelor of Arts from Duke University.  An avid traveler, reader, bread baker, ice cream churner, and (aspiring) cheese maker, she also enjoys helping her husband tend to their rooftop garden and vermiculture operation.  She currently resides in Washington, D.C.

As Camber Collective’s Director of Impact and Equity Rozella Kennedy helps direct the firm’s internal Impact, Equity, and Belonging work as well as the external practice. Her theory of impact seeks to leverage equitable values to influence and impact the humanitarian, development, philanthropic, and social impact sectors. The long focus is to expand awareness and practice in local and global post-colonial contexts. Rozella is also the creator of Brave Sis Project, a lifestyle brand using narrative and social engagement to uplift BIPOC women in U.S. history as a tool for learning, growth, celebration, and equity allyship; her book “Our Brave Foremothers: Celebrating 100 Black, Brown, Asian, and Indigenous Women Who Changed the Course of History” was published by Workman Press in Spring, 2023.

… Between the Redetermination Process, Expanded Maternal Coverage, and the Ongoing Struggle for Health Equity 

Introduction

The Consolidated Appropriations Act, passed in December 2022, illustrates how any change to the American social safety net requires sub-optimal compromises and trade-offs. This give and take is particularly present in today’s partisan political environment. Case in point: the $1.7 trillion federal omnibus spending bill introduces Medicaid provisions that will simultaneously reduce insurance coverage for certain enrollee subgroups while expanding it for others—effectively creating a coverage tug of war among our most vulnerable populations. While this legislation can be seen as a victory for maternal health coverage (albeit a somewhat limited one), in aggregate it will likely reduce access to care for those who need it most. The maternal health provisions will undoubtedly help improve both gender and racial health equity in maternal and newborn care; however, the Medicaid redetermination process will have a disproportionately negative impact on current Black and/or Hispanic* enrollees (see Figure 1).

Evolution of Medicaid Coverage in the Wake of the COVID-19 Public Health Emergency

To anticipate and address the nation’s healthcare needs during the COVID-19 public health emergency (PHE), the Families First Coronavirus Response Act (FFCRA) was signed into law in March 2020. Notably, the FFCRA provided increased federal Medicaid funds to states with the stipulation that they abide by specific requirements, including prohibitions on involuntary disenrollments and decreased income eligibility levels. Over the past three years, the Act’s continuous coverage provision has played an effective and impactful role in mitigating both Medicaid “churn” (the temporary loss of coverage in which enrollees disenroll and then re-enroll within a short period of time) as well as the outright loss of coverage that often occurs due to changes in employment status and/or income.[i]

As a result, the Centers for Medicare & Medicaid Services (CMS) estimates that Medicaid ranks swelled by 20.5 million enrollees between February 2020 and October 2022, a massive 32% increase. The net impact of the FFCRA is 91 million Americans, including 41 million children, being covered by Medicaid and CHIP programs—a record.[ii] The primary driver of Medicaid enrollment growth was not the addition of new program participants but rather the retention of existing enrollees.[iii] Notably, the pregnant individuals eligibility group experienced the greatest increase in enrollment during the pandemic, adding more than 650,000 expectant-mother beneficiaries to the Medicaid program, a 62% increase over pre-pandemic numbers. Not only does the enrollment increase for this subgroup point to a significant gap in maternal coverage under pre-pandemic policies, it also highlights the marked health disparities between racial groups in the U.S.[iv]

Despite making up about one third of the general U.S. population, pregnant Black and Hispanic women** comprised approximately 55% of the increase in expectant-mother Medicaid beneficiaries due to the continuous coverage provision (see Figure 2). Without the protections offered by this type of provision, pregnant Black and Hispanic individuals struggle more than other racial and ethnic groups to secure and maintain access to coverage, putting both mother and baby at risk.

After three years of steady and stable Medicaid expansion, the 2023 Consolidated Appropriations Act is poised to eliminate a significant portion of these coverage gains. The legislation eliminates the continuous coverage requirement as of March 31, 2023, allowing states to once again begin the process of Medicaid eligibility redeterminations and disenrollments. The federal government implemented guardrails to ease the Medicaid redetermination process such as a gradual ramp down of the enhanced Federal Medical Assistance Percentage (FMAP) match implemented during the public health emergency and data reporting requirements for the states. Unfortunately, such provisos will not prevent significant loss of coverage for many people because most states simply do not have the budget surplus necessary to sustain higher coverage without the injection of enhanced federal assistance.

The Impact of Coverage Redetermination on Racial Health Equity

The Urban Institute estimates that 18 million people will lose Medicaid coverage between April 2023 and May 2024, with approximately 4 million becoming uninsured as a result.[v] The Department of Health and Human Services (HHS) projected that approximately 45% of those people likely to lose Medicaid, either due to the outright loss of eligibility or administrative churn, are Black or Hispanic. The disparity is striking when one considers that these groups combined comprise only 33% of the American population.[vi]

According to HHS estimates, approximately 7 million eligible people will lose Medicaid coverage solely due to administrative challenges resulting from the redetermination process. These administrative roadblocks requiring beneficiaries to “prove” their eligibility include lengthy wait times, unreasonable deadlines, burdensome and missing paperwork, lack of knowledge about the redetermination process, and incorrect contact information. The structural racism embedded in American social systems further exacerbates the difficulties faced by People of Color, who are more likely to experience housing and employment volatility. The compounded issues make it difficult for state agencies to contact eligible individuals and verify administrative details such as income level and current address. For this reason, Hispanic enrollees are more likely to lose coverage due to administrative issues than white Medicaid enrollees (see Figure 3).[vii]

The Impact of the Recent Federal Legislation on Maternal Health

Prior to the American Rescue Plan Act of 2021 (ARP), federal statute mandated that states provide pregnancy-related Medicaid care for only 60 days postpartum with a minimum income threshold of 138% of the federal poverty line (FPL). While some individuals would qualify for Medicaid coverage via other means after this 60-day window closed, an estimated 45% of new mothers would lose coverage under this stipulation.[viii] Effective April 2022, the ARP gave states the option to extend postpartum care and receive matching federal funds for 12 months of post-birth coverage through the use of state plan amendments. The stipulation that this option would expire in 2027 led some states to demur from expanding coverage that would need to be rolled back in the near future. Given the unacceptable U.S. maternal mortality rate—The Commonwealth Fund estimated that the U.S. recorded 23.8 maternal deaths for every 100,000 births in 2022, a maternal mortality rate that is more than three times that of France, the country with the second-highest rate among developed nations [ix]—a concerted effort was undertaken to advance maternal health. A stipulation in the December, 2022 Consolidated Appropriations Act provided a fortuitous outcome as it eliminated the 2027 expiration date, thereby establishing permanency for the 12-month postpartum coverage option.

The World Health Organization (WHO) defines the postpartum period as beginning at childbirth and lasting around six weeks, encompassing the time during which the mother‘s body begins transitioning to a non-pregnant state. While an estimated 35% of pregnancy-related deaths in the U.S. occur between one and 42 days postpartum, approximately 30% occur between 43 and 365 days postpartum. [x] This statistic clearly indicates that after-birth care must extend beyond the generally accepted six-week postpartum period. Loss of insurance coverage and lack of access to care are driving factors of many of these deaths, including those that occur months after giving birth. According to the CDC, between 60% and 80% of all pregnancy-related deaths are preventable. Thus, the pre-pandemic federal policy that mandated only 60 days of postpartum coverage created a potentially life-threatening gap in care, one that inordinately impacted nonwhite individuals. As an example, Medicaid covers approximately 40% of births nationwide—2 million mother-baby pairs—but that number increases to nearly 70% for Black individuals.[xi] Furthermore, maternal mortality rates are three times higher for Black women than white women.[xii]

While the coverage extension option is undoubtedly a step in the right direction for maternal health, the fact that it remains an option for states, rather than a mandatory requirement, certainly blunts the policy’s impact. Despite this deficiency, a majority of states currently support expanded coverage. As of March 2023, 28 states plus the District of Columbia have elected to adopt 12 months of postpartum coverage; it is expected that additional states will follow suit this year (see Figure 4).[xiii] It is estimated that this policy change has provided approximately 500,000 individuals with extended postpartum coverage and, if all states adopt the measure, an estimated 720,000 people would be eligible for a full year of postpartum care.[xiv]

According to Congressional Budget Office estimates, it would cost the federal government $1.2 billion over 10 years if all 50 states plus the District of Columbia implemented the extended postpartum coverage provision.[xv] Assuming that the U.S. live birth rate increases 1% per annum over the next decade, while the maternal mortality rate remains constant, many lives would be saved. Indeed, our calculations project that, if all states extended postpartum coverage from 60 days to a full year, approximately 960 maternal deaths would be prevented.

Even beyond the moral imperative of valuing the lives of each expectant mother in America, the economics of savings lives is obvious. Expanding upon the above scenario, the estimated cost per life saved would be $1.3 million, well below the mean value of a statistical life (the estimate of the willingness to pay for small reductions in mortality) of $9.4 million in today’s dollars (see Figure 5).[xvi] [xvii] The implementation of full-year postpartum coverage across all states is clearly a cost-effective policy in addition to an ethical one.

It is worth noting that this analysis likely underestimates the cost per life saved by extending postpartum coverage, because the calculation assumes a constant maternal mortality rate. The fact is however, that extending coverage to a full year will undoubtedly decrease this rate even further. Additionally, the cost per life estimate of extended postpartum coverage likely fails to fully reflect the overall positive impact and effectiveness of this policy since it does not account for the holistic impact on mother and child health.

Extended postpartum coverage is an issue that cuts across partisan boundaries—at least to some extent. Of the 24 states that have banned or are expected to ban abortion since the US Supreme Court overturned Roe v. Wade in June 2022, half have elected to provide a full year of Medicaid coverage post-birth.[xviii] Notably, seven of the 11 states that have not expanded Medicaid in the wake of the Affordable Care Act (ACA), such as Georgia, Florida, and Tennessee, have implemented full year postpartum coverage. While the expanded postpartum coverage is undeniably helpful in improving maternal health outcomes, for many people, it simply postpones the inevitable loss of coverage, especially in the non-Medicaid expansion states where income limits for non-pregnant adults are typically well below 138% FPL.[xix] [xx] On the other hand, a number of Medicaid-expansion states such as Arkansas have been slow to extend postpartum coverage to a full year. This state consistently ranks among the worst in the nation when it comes to maternal mortality with 30.2 maternal deaths per 100,000 live births. This rate greatly exceeds the national average of 23.8.[xxi] When racial disparities are layered on top of such dismal statistics, the outcomes are even more stark. In Arkansas, Black mothers are more than twice as likely to experience a pregnancy-related death than white mothers.[xxii]

It is likely that not all states will elect to provide 12 months of continuous postpartum care, putting numerous mothers at risk, with nonwhite mothers bearing more of that risk, especially in those states that have implemented abortion bans in the post-Roe era. In December 2021, the University of Colorado quantified the uptick in pregnancy-related deaths that would occur due to the heightened mortality risk of continuing a pregnancy as opposed to having a legal abortion—a 21% increase across all women, but a 33% rise for Black women.[xxiii] While this study, published in advance of the Dobbs v. Jackson Women’s Health Organization decision, assumes a national ban on abortions and is not specifically focused on the postpartum period, the findings are illustrative of the U.S.’ inequitable maternal health policies.

Looking Forward

Since 2020, the federal government has passed a patchwork of legislation, much of which contained embedded critical health policy shifts, even though healthcare was rarely the principal focus of such legislation. Not surprisingly, this approach creates outcomes that lack coherence and consistency in terms of their effect on the Medicaid safety net. This access and equity tug of war is emblematic of the often-paradoxical impacts of Medicaid, the “single most important publicly funded health program for low-income and underserved people,” yet one that suffers from “racism baked into the system” because it was established as an optional program for states borne out of the country’s pre-existing welfare infrastructure.[xxiv]

To amplify the positive effects of the Medicaid policy changes taking effect this year, key stakeholders such as state agencies, advocacy groups, philanthropic organizations, Medicaid managed care organizations (MCOs), communications specialists, and health technology companies should pursue targeted tactical activities, including the following:

1. Leverage Data and Community-Based Outreach

Those states that have elected to extend postpartum coverage to a full year should launch targeted outreach campaigns to ensure that everyone eligible takes full advantage of this expanded access to care, especially pregnant Black and Hispanic women. These campaigns should be multi-faceted and data-driven, bringing together key stakeholders in support of shared goals. Furthermore, this outreach should leverage community-based approaches that revolve around specific needs and circumstances as well as tap into trusted relationships. Campaign messaging should be designed strategically, taking into account the particular preferences and attitudes of different communities.  

2. Take Steps to Limit Administrative Churn

To mitigate the negative effects of what is sure to be a burdensome redetermination process, states should endeavor to minimize administrative churn as much as possible, especially among Hispanic beneficiaries, leveraging enrollment navigators as well as working with peer social services or support organizations to confirm and share contact information. Additionally, states should seek to both improve the ex parte renewal process, the first step in Medicaid redetermination whereby states can automatically attempt to renew coverage by consulting available data sources to confirm eligibility for certain enrollees, as well as increase the number of successful ex parte renewals. One method is to review the internal documents that define which cases can be renewed ex parte and determine what reasonable changes could be made to the definition and the business rules undergirding the renewal system itself. Additionally, it may be helpful to leverage supplemental data sources such as the Supplemental Nutrition Assistance Program (SNAP) to increase the percent of cases successfully handled via the ex parte process.[xxv]

3, Engage Partners for Support

State agencies and Medicaid MCOs should consider seeking temporary external assistance to help share the workload and mitigate churn. Philanthropic funders can help bridge the gap here, providing financial support to implement or expand navigator programs and facilitate data sharing. Additionally, healthtech innovators have the opportunity to step in and provide solutions related to data management and systems optimization.

*While “Hispanic” and “Latino” are often used interchangeably, and many readers show a preference for one or the other designation, or perhaps “Latino/a/e/x,” this paper uses “Hispanic” to align with Census and other federal data tracking conventions

** In line with statutes and regulations, Camber uses the term “women” when referencing individuals whose sex assigned at birth was female; however, we recognize that not all people who give birth identify as women.

Kim Langenhahn draws on more than 15 years of consulting, operational, and startup experience in the domestic and international health and nonprofit sectors to help organizations navigate complex issues, operate more effectively, and deliver greater impact. During the course of her career, Kim has helped numerous healthcare organizations tackle a variety of strategic challenges such as scaling Terrapin Pharmacy’s remote medication adherence system, launching a MENA-focused healthcare incubator, devising system-wide strategy for the Saudi Arabian Ministry of Health as part of PwC’s consulting practice, and developing a market forecast for a pharmaceutical company alongside her L.E.K. Consulting colleagues.  She is also the Cofounder of a small social enterprise that she runs with her family

Kim earned a Master of Business Administration and a Master of Public Policy from the University of Chicago as well as a Master of Science in Quantitative Management and a Bachelor of Arts from Duke University.  An avid traveler, reader, bread baker, ice cream churner, and (aspiring) cheese maker, she also enjoys helping her husband tend to their rooftop garden and vermiculture operation.  She currently resides in Washington, D.C.