Medicaid Unwinding is Going Terribly: By the Numbers
April 1st came quickly in the state of Florida this year. It was the day that began the unwinding of the state’s continuous coverage of Medicaid as part of the federal government’s COVID-19 pandemic response. Not every state began at the same time and the Biden Administration had issued guidance to states that amounted to “take your time, please. Don’t rush this.” But Florida, among other states, wasn’t so interested in taking advantage of waivers the Centers for Medicare and Medicaid Services (CMS) offered, to help ease the speed in which states might end up disenrolling patients thanks, in some part, to automated redeterminations. Now, these redeterminations are supposed to cross reference available tax and income data in order to tap the breaks some when it comes to financial eligibility of a beneficiary. How efficiently that’s happening, well… here’s some updates to paint the picture.
In June 2023, Kaiser Family Foundation (KFF) issued an analysis that between 8 million and 24 million beneficiaries would potentially lose coverage during the unwinding period (about 18 months), largely dependent on how states handled the redetermination process. As of their effort, KFF’s tracker estimates about 5.5 million beneficiaries have been disenrolled and about 8.9 million have retained their Medicaid coverage in the 45 states (and D.C.) providing data. Of those 5.5 million, about 1.15 million are children or about 43% in the states providing data with age breakouts (that is, only about 15 states). 74% of all disenrollments are for “procedural” reasons, rather than any determination of actual eligibility.
Florida is one of just two states to decline taking any of the 17 types of waivers CMS offered states to ease the unwinding process. Montana is the other. Every state received letters earlier in the month outlining CMS’ concerns regarding three core areas of concern, which are situated in requirements under federal law and regulations; slow application processing, long call center wait times, and high rates of people losing coverage due to paperwork issues. While 36 states got flagged for being weak on at least one criterion, five states were behind on all three: Alaska, New Mexico, Rhode Island and – you guessed it – Florida and Montana. 16 states were cited for long call center wait times. 16 states were cited for having not processed applications within a 45-day window.
Rhode Island is the only state that issued a statement to Politico in response to the letters saying that it was delaying ending coverage for families and children until the beginning of 2024.
Despite Florida having a relatively low disenrollment rate of 31% (Texas’ disenrollment rate is 72% and the highest in the country, 11 states have a disenrollment rate above 50%), families in the state have had enough. Representing two specific families and the families like them across the state, the Florida Health Justice Project and the National Health Law Program sued the state of Florida on August 22nd. One family’s toddler missed weeks of their cystic fibrosis medication after being cut off and the other had their one-year-old miss a routine vaccination after their provider notified them the appointment was canceled due to lack of coverage. Both families are alleging they were not properly notified or given the chance to appeal the decision before termination of coverage – both are federal requirements.
This is the type of claim the Biden Administration is going to be itching at intervening on because it validates the concerns they’re been broadcasting about the unwinding process.
With all that comes the very real risk of a judiciary changed by the previous administration taking aim at the federal government’s powers and programs targeted at helping poorer communities. Advocates exercising legal strategy should watch these developments closely and engage with their state and federal legislators to ensure the outcomes of these processes, be they executive or judicial, actually reflect what they intend.
Payers Finally Facing Scrutiny for Denying Coverage
In February of this year, we covered the issues of inequity and administrative barriers patients face when seeking medically necessary care, especially when that care is for chronic or complex conditions. The blog followed ProPublica’s review of Christopher McNaughton’s trials (quite literally – there was a lawsuit) and tribulations with United Healthcare’s refusal of coverage. The situation highlighted how the payer had never intended to cover McNaughton’s care, regardless of necessity, and shopped “appeals” doctors in order to avoid finding his care was “medically necessary” and therefore required to be covered.
The ProPublica article was published some two years after United Healthcare (UHC) had floated instituting a policy of retroactive review and denial of emergency room care – the scheme went something along the lines of “if we think you didn’t really need to go to the ER, we’ll make you pay the whole bill yourself.” The tactic was roundly shouted down by advocates and providers as dangerous. Afterall, a payor reviewing documents rather than actually serving in an emergency room is never going to grasp the details of certain situations – like the unique symptoms women face when having a heart attack. Eventually UHC pressed the pause button and after some jockeying back and forth between the payer and the American Hospital Association, UHC said the entity wouldn’t enact the policy. Turns out, that might not have been an honest assertation according to a lawsuit issued by the U.S. Department of Labor (DOL). To be clear, the payer entity that’s targeted in the suit is a third-party administrator within UHC’s subsidiary – called UMR – but arguing that nuance isn’t going to matter to a patient who had their care claim unjustly denied.
The lawsuit asserts that UMR denied “thousands” of urine drug screenings and emergency room visits and violated the Affordable Care Act’s “prudent layperson” standard. That standard requires that payers reviewing claims consider how the average patient might approach concerns or symptoms they’re experiencing, not a medical professional. Now, there’s a thing about when these denials took place, 2015 to 2018, means UHC’s proposed policy of retroactive denial might have been an improvement over their previous policy of denying every urinalysis claim. Which is just…wild. Further, the suit alleges that UHC wouldn’t clearly tell doctors what additional information they needed during appeals processes – which sounds strikingly related to McNaught’s troubles with the payer.
DOL wants UHC to review all denied claims and adopt new policies which wouldn’t result in what amounts to an automatic denial process. And it’s not unheard of. In 2020, a judge in California found another UHC subsidiary automatically denied coverage of care to patients seeking to use their mental health and substance use treatment benefits and ordered some 67,000 claims to be re-reviewed and new processing policies to be adopted.
Similarly, Cigna is coming under scrutiny. A class action lawsuit filed in California is alleging Cigna denied some 300,000 claims in just two months last year. The absolutely bonkers part about that is Cigna used an algorithm that spent just 1.2 seconds on each claims review before sending them off to doctors to sign them – meaning those claims might not have ever actually been seen by human eyes in what amounts to an automatic denial process. Cigna, for its part, decided its public facing comment would be to call ProPublica’s coverage of their denial process “poorly written”. All that despite the House found ProPublica’s investigation worthwhile enough to drag Cigna in front of the Energy and Commerce Committee for a hearing on the legality of these denials. Mike Kreidler, the insurance commissioner for Washington characterized Cigna’s operation as an “abhorrent” practice “to routinely deny just to enhance the bottom line.”
All of this coming just weeks after the Office of Inspector General released a report on how Medicaid managed care organizations (MCOs) are utilizing prior authorizations processes and denial of care in an abusive fashion, harming the poorest patients in the country and with little oversight by the states contracting these MCOs. Among those listed with a prior authorization denial rate higher than 25% was United Healthcare. And none of that touching that more and more providers are contracted by UHC, meaning those denials were denials of care in which their own providers had decided what was medically necessary.
The scrutiny of payors coming by way of lawsuits is welcomed but advocates and policymakers shouldn’t wait for judges to determine the scope of harm patients are experiencing. We need to seek a statutory and regulatory reigning-in of these run-away practices bilking our healthcare systems at the expense of patient health. And we need to do it now.
Biden’s State of the Union: Bold Promises on Public Health
On March 1st, President Biden delivered his first State of the Union Address to both chambers of Congress and the American people at large. Amid a slew of foreign and domestic policy proclamations, particular attention should be afforded to the statements and commitments made about addressing the COVID-19 pandemic and public health, more broadly. Championing the landmark legislation that was the American Rescue Plan, the President laid out how the legislation’s programming reduced food pantry lines, increased employment, and how expansion of the Affordable Care Act’s subsidies resulted in lower insurance premiums for many Americans. In addressing the COVID-19 pandemic, Biden also recognized a sobering outcome that will shake the nation: within the next few weeks, the United States’ official COVID death toll will surpass one million people. Though the President misstated the moment in that those empty seats at dinner tables will be more than a million; on average each COVID death has impacted 9 other people, including orphaning children across the country. Biden then shifted the address, citing the Centers for Disease Control and Prevention’s recent announcement of adjust masking guidelines and metrics of risk, trying to signal a much-needed political win in the fight against COVID. However, immediately following these statements, the President also focused on providing the country with another round of free at-home COVID-19 tests and implementing a tactic already well-known in the HIV space: test-to-treat, with added bonus of the program following the COVID vaccine model and having no out-of-pocket expense for patients.
The program ideals outlined in the days that followed found some confusion, need for clarity, and even some professional association bickering. Public health professionals who have long advocated for more robust responses to the pandemic took to news outlets to vent their frustrations and the American Medical Association drew derision on social media for their statement discouraging pharmacists prescription and provision of COVID antivirals. Pharmacists have long been a target for HIV advocates, especially in terms of increasing pre-exposure prophylaxis (PrEP) access and decreasing test to treat initiation delays. Wouldn’t it be nice if this COVID program provided a model outside of vaccination in which pharmacists could also serve a more robust role in facilitating seamless treatment and prevention? The meaningful hiccups the administration and advocates should keep a close eye on in this regard is the labor shortage of pharmacists, closing of more rural locations for chain pharmacies, and any developments around anti-competitive practices of pharmacy benefit managers (PBMs) associated with pharmacies. Consequences of these will extend beyond immediate COVID programming and ideal HIV programming.
The President also made statements referring to medication costs and price controls and needing to make sure more Americans could afford their care. However, details were lacking and if any recent effort is indicative, singularly focusing on manufacturer list prices won’t address patient costs or get much anywhere. Buyer beware, some proposals in the apparently sunk Build Back better legislation would also cut provider compensation in public payer programs, a dire consequence as the nation struggles with health care staffing shortages. Those shortages should be noted in detail because the American Rescue Plan provided funding meant to supplement the financial demands of staffing a pandemic and there’s good reason to suspect administrators, rather than providers, enjoyed the fruits of that labor. Further, most Americans experience their out-of-pocket costs of care due to the benefit design of their insurer (and PBM), not the manufacturer list price. Indeed, the Biden Administration appears to eb as insurer friendly as the Obama admin. To impact the costs facing patients more meaningfully at the pharmacy counter and other burdens in accessing medication, the Biden administration should focus more on developing patient protections via the regulatory process, limiting the aggressive utilization management (or deny-first coverage) policies, increasing formulary restrictions, and discriminatory plan design. Some of the tools for doing so already exist, but the federal government has yet to curb the tactics of payers in avoiding their responsibilities under the ACA’s medical-loss-ratio rules or ensure payers are not inappropriately applying cost-sharing for qualifying preventative medications and services.
The President also became the first to mention “harm reduction” in a State of the Union Address. Urging Congress to pass the Mainstreaming Addiction Treatment Act (MAT Act), President Biden is seeking to fulfill his commitments to address the opioid epidemic and move toward modernizing domestic drug policy. In a sign of acknowledgment of the scope and size of substance use epidemic in the country, Biden endorsed recovery programs and recognized the more than 23 million people struggling with addiction in the country. Immediately following the MAT Act mention, the President moved on to address of a lesser defined but equally important need in encouraging commitment to a robust set of policy ideals aimed at meeting the mental health needs of the country.
All these good things can easily be outweighed by what wasn’t mentioned. President Biden did not mention any interest in extending another round of stimulus payments, despite the program resulting in one of the largest reductions in poverty in US history. And while there was focus on rebuilding the nation’s health care staffing, no mention was afforded to rebuilding the nation’s public health infrastructure. Meanwhile, we’ve known for quite some time poverty as a notable association with HIV and decreasing poverty also decreases HIV risks and prevalence, data remains in the decline with regard to HIV and STI screenings, Hepatitis C rates are still on the rise, and inconsistencies in PrEP usage during the height of initial COVID waves likely foretells a more diverse at-risk community. Even the government’s own HIV.gov webpage dedicated to the State of the Union fails to mention any HIV or HCV specific programming efforts associated with the address.
While there’s much to celebrate about the President’s COVID goals, advocates should be cautious about projecting those goals onto other public health efforts. Afterall, COVID proved we could provide more up to date reporting than the 2 year delays we typically see in HIV and HCV surveillance, but we haven’t. COVID-related telemedicine expansion was welcomed by patients across the nation but Congress is poised to claw back those gains. For many of us, while the state of the union is improving coming out of the Omicron wave of the COVID-19 pandemic, much work remains. Including reminding this administration that it is empowered to protect patients, access to and affordability of care, an obligation to invest in public health programs beyond COVID and has committed to advancing efforts to End the HIV Epidemic.
Jen’s Half Cents: The Trauma of Advocacy
Author’s note: This blog will not be giving any identifying information, screenshots, or links to provider or advocate comments. As the focus of this blog is a need to acknowledge the traumatic nature of working in public health and advocacy, protecting the identities and personal spaces of these heroes is of the utmost importance.
In April of this year, a friend I’ve worked closely with on a variety of personal and professional levels wrote me: “So…I’ve quit my job and left the field.”
They had spent years working for a health department funded entity serving both urban and rural areas, doing outreach, contact tracing, care and coverage navigation, advocating for clients with providers, for providers with administrative management – the full gamut of public health activity, specifically around HIV and STIs. Last March, they were sidelined to COVID work, face-to-face, often without protective equipment, lacking time off, enough staffing support, and more. Everything everyone else went through as COVID gripped the nation with the most stringent mitigation efforts. Over the summer they would be tasked with pulling “double duty” between COVID contact tracing efforts and HIV and STI work.
This story is not unique.
While higher profile exits from the field of public health have gotten some attention, as evidenced by CNN’s coverage in May on more than 250 public health officials having quit, resigned, been fired, or retired, those that take on the daily tasks of providing care within communities haven’t gained the attention they deserve. In January, the National Coalition of STD Directors published their “Phase III” survey of state STI programs and the findings were startling – every, single published comment discussed the issue of burnout among disease intervention specialists, data managers, and other client-facing staff. As the so-called Delta Variant of SARS-CoV-2 grips the nation in now a noted “fourth wave”, these human resources making the very body of public health haven’t been replenished. Many providers, advocates, community members, survivors, loved ones of those lost to COVID, some elected officials, and those at greatest risk of severe COVID complications or loving those who cannot yet access vaccines have taken to social media to voice their frustration with the state of the nation’s response to COVID-19.
For HIV/AIDS advocates, this isn’t new. We’ve spent four decades being ignored or actively discriminated against, having our stories stolen from us and mutilated in efforts to demonize us, our vulnerabilities and very disease state criminalized – used as justifications for denying us basic freedoms and access to the very care that keeps us and our loved ones alive. We’ve watched promises made, lofty goals announced, and the dollars behind those goals go unused due to lack of flexibility and then usurped to put children in cages and concentration camps, those dollars used to rip children from their parents, sometimes right before their eyes. People living with HIV accessing Ryan White programs are asked to detail to case managers intimate and personal aspects of their lives they may never share with other people. The same case managers who are over worked and underpaid and can’t be provided the supports they need in order to make clients feel like the ears and eyes prying in their lives actually care.
Yet and still, these same voices, these same lives and experiences are those relied upon to move legislators and policy makers, and beg and plead for changes that would reduce barriers to care for us and other people. There is not a single advocate I know, personally, who has not run into a barrier to care or system failure or – frankly – a bigot abusing politics or process who has not turned around and fought with every breath to ensure those harms are ended. “I will do everything I can to make sure no one ever has to go through what I went through.” There is a love in this sentiment that cannot be measured. It fills you up – it fills me up – from your gut to your chest, it becomes the wind at your back and that love inspires and sustains…for a while. That love stands in stark contrast to the politicized and polarized response to COVID-19 mitigation efforts and vaccination campaigns where frustrations run up against conspiracy theories and near sociopathic adherence to contrarian conflict.
We don’t talk about what it is, the personal cost, to retell our stories time and again. We don’t talk about the nature of purposely reengaging our traumas in order to advocate for the world around us. There’s a fear that runs quiet in the background when some decides to change their path or step back from advocacy. That fear often sounds like a hushed phone call, “Am I a bad person for not being up for this?” All that fear compounds with the daily stress of paying bills or commuting or caring for family or going to school so you can be heard with more legitimacy or…or…or….
That piece is the emotional labor of survival.
Advocacy and public health are not for the faint at heart. And….
Those entities, governmental and private, funding care and advocacy, regardless of space – be it oncology, HIV/AIDS, STIs, substance use recovery – need to consider these costs when evaluating awards. When compensation for these stories or “community engagement” often tops at twenty dollars an hour, funders are telling those with the courage and voice to share those stories that our years of trauma – the very expertise of “lived experience” or existing at the intersections making up your consumer base – is worth less than the average cost of your tank of gas. Supporting communities means supporting a living wage, supporting operations costs, supporting expanding staffing, supporting entities with mental health days as part of leave policies. Supporting effective advocacy and efficient public health means supporting the very humanity behind these efforts.
Jen’s Half Cents: Fixing the Broken Patient Advocacy Pipeline
One of my first conversations with Bill Arnold was particularly memorable. I had just started hormone replacement therapy, my beard wasn’t nearly as strong as it is now, and I’m certain I looked like a 16-year-old. In a moment of career transition, I had also recently joined the board of directors for ADAP Advocacy Association (aaa+). The Washington, DC air was warm, indicating a cool evening ahead, and we were taking a break outside during the ADAP Annual Conference. Following a detailed but brief chat about the state of political play around the Affordable Care Act, we went back inside for the next session and ran into Brandon M. Macsata, aaa+ CEO. What ensued was a discussion of strategy to recruit and engage younger advocates in patient advocacy and in particular the space of HIV. I think, in no small part, because I was the youngest board member at the time and because I was one of the newest board members, this “getting to know you” opportunity was also an excellent opportunity to discuss various priorities in advocacy and the current state of the advocacy ecosystem.
It should come as no surprise we independently concluded the health of the patient advocacy ecosystem was weak, having surpassed the moment of crisis, interests in our needs were waning, especially with certain competing priorities, advancements in therapeutics to treat HIV, and chronic nature of the illness that brought us all together. To be honest, the time between then and now, much like the nature of any chronic illness, has not much changed and it certainly hasn’t advanced. Even with the heavy reliance on a variety of expertise from the field of HIV to address, mitigate, manage, and – with any hope – defeat COVID-19, HIV patient advocacy has suffered greatly in the last decade. Arguably longer.
I’ve often mulled this conversation and the complex realities impacting the health of our aging advocate community. The truth is, many of the survivors of the AIDS Crisis never expected to live this long. All that work, all that fight, transformed into one of three paths; death, patient, or industry. Many people who took up the mantle of HIV patient advocacy or care delivery with extraordinary efficacy. To date, given the enormous obstacles of funding, access, stigma, and systemic biases, debatably, few public health campaigns have been as effective as those associated with the prevention, testing, and treatment of HIV. However, despite all of our successes and advocacy, according to the Centers for Disease Control and Prevention, progress in combatting the domestic HIV epidemic has stagnated over the last decade.
Central to this issue, few states have expanded their HIV funding in the last decade (kudos to Georgia’s HIV advocates for the recent influx of state funding to their State AIDS Drug Assistance Program), onerous rules on how to funds may be spent have left federal funds on the table, unused until usurped by political ideologues to put kids in cages, service providers are experiencing an extraordinary rate of burnout, competition in advocacy space has discouraged younger talent from staying in the field, or problematic policies or personalities in legacy institutions have pushed these young advocates to start their own agencies with little in the way of support – further compounding the field of competition.
Our ideas have aged as much as our leadership has. At the 30-thousand-foot view, this is one of many of the core reasons we’ve failed to advance in our fight against HIV.
In order to meaningfully advance HIV patient advocacy and thus work toward a more equitable regulatory and funding landscape, private funders and foundation partners need to re-examine “leadership development” initiatives and projects. Currently, these so-called “leadership development” programs are often short-lived, focus on recruiting a specific demographic audience, may share some story-telling skills, and maybe offer some networking among audience members. The idea being to further engage highly affected populations which may not otherwise fit traditional requirements in hiring and promotion screening. Often, these funds go to large entities which may lack specific expertise or experience with the intended demographic audience. Deliverables for these programs do not require hiring or connecting to employment opportunities for attendees, nor do they include requirements to advance leadership opportunities with existing staff or external recruitment from target demographics or affected community. These “leadership” programs lack any substantial applied benefit for affected communities, target demographics, or the patient advocacy landscape at large.
Internally, funders and providers required to engage community advisory boards often suffer the same stagnation. Community advisory boards maintain the same membership for years and years, with limited power of influence over industry activities, and zero incentive to seek new voices or experiences, including lack of compensation for time spent. To be clear, for our pharmaceutical manufacturing partners and government agency partners: community advisory boards should be disease state or demographic identity specific and not generalized for chronic illnesses or general populations in order to meaningfully affect the health and wellness of these communities, ensure equitable clinical trial and programmatic designs, and prioritize the needs of the impacted communities as those communities define them.
The argument goes “We need the institutional knowledge or connections. We can’t afford to lose the investment already made into these members.” And whole host of other reasons that amount to “that’s too hard.”
In order to move forward or even maintain effective advocacy, funders, both public and private, commercial industry and non-profit industry, need to re-work the deliverables associated with advancing leadership and recruiting and fostering advocacy expertise.
In short, it’s time to fund the retirement of aging leadership that never thought they’d live this long.
This is not a flippant suggestion, nor is it intended to provoke overnight changes that ultimately weaken the human infrastructure of advocacy. Rather, in order to meaningfully invest in the patient advocacy pipeline – and ultimately ensure shared interests of communities and industry and public health are met – “leadership” and “development” programs should aim to require, at least, the following, as appropriate:
Recruit candidates on the basis of advancing their personal careers and career goals, in alignment with the entity’s mission, as opposed to existing skill sets (job skills can be taught and indeed most are taught on the job)
Develop and implement a leadership change plan (ex. Year 1: identify candidates, Year 2: Mentor candidates in role, function, and networking. Year 3: Shadow candidate in performance of duties, critique and advise)
Review and update human resources policies including but not limited to education requirements for positions (ie. lived experience in lieu of formal education requirements), compensation relative to private industry competitors and best practices, and staff demographics relative to client demographics (these should be relatively on par to each other)
For conference style programs: require job placement or work search assistance until placement is found for the candidate
For community advisory boards: term limits, industry standard consultant compensation for board members, demographics reflecting that of affected communities, and member transition and mentoring programs aimed at recruiting
Part of how we’ve lost our way in advocacy is focusing on “cause” to drive interest and, frankly, cause does not keep the lights on. As non-profit industry moves to better understand that “cause over compensation” is robbing us of our best and brightest minds, so must our funders. We cannot recruit and retain the most creative generation of talent by racing to the cheapest contract.
President Biden is oft cited as saying “Don't tell me what you value, show me your budget, and I'll tell you what you value.” Though the sentiment has long existed and touted by others. And it misses the point of implementation.
Your integrity is spending your money in a way that actualizes your values.