Alliance Update: Each year, the Mental Health Weekly publishes an overview of top mental health policy issues from the previous year and the one to come. See below for this year’s summation. Among the most compelling, longtime mental health advocacy and policymaker Ron Manderscheid emphasized that “2024 is going to be a ‘watershed year’ for behavioral health and mental health in terms of the presidential elections and the potential shift in the House of Representatives and Senate, said Manderscheid. “The future well-being of mental health is tied to whatever happens in those elections,” he said. We can’t say this is not our problem, this is not our issue. We have to speak up.’ Manderscheid added, “In 2024, we have to be mobilizing voters from our own field, mobilizing consumers, and people in recovery and indicating to them how very important this year will be for us, but also for the future of mental illness.”
In the spirit, our Alliance has lauded many of the advances in our field initiated by the Biden Administration, including the creation of SAMHSA’s new Office of Recovery and a return to leadership focused on a rights and recovery based system. In any case, let’s make sure that everyone you know is registered and does indeed vote in this year’s fall Presidential election.
See next piece for remarks by several mental health advocates about key issues for 2024, including comments by AOT proponent E. Fuller Torrey and opponent Harvey Rosenthal, CEO for the Alliance for Rights and Recovery, which rebranded from NYAPRS this past year and helps to manage this list.
Parity, Medicaid Review, 988 Usage Research, Among 2023 Highlights
Valerie A Canady | Mental Health Weekly | December 29, 2023
From the loss of a mental health icon to the first-year anniversary of the 988 Suicide & Crisis Lifeline, from the proposal of new rules to strengthen parity to a Medicaid redetermination process that could result in the loss of coverage for millions of adults and children, 2023 revealed a number of impactful stories for the mental health field.
As 2024 begins, it affords the field an opportunity to take stock about the work accomplished in the previous year, as well as its gains and losses. Here are a few summations of some major events covered by Mental Health Weekly last year.
988 … How Much Progress?
When the one-year anniversary of the implementation of the 988 Suicide & Crisis Lifeline approached last year, the field celebrated the success of the crisis line’s reach in helping millions of people experiencing a mental health and suicidal crisis. However, they revealed that more work is needed, in particular, increased federal and state funding support to pay for needed investments in capacity, infrastructure and the workforce.
“I still believe that the creation of 988 was one of the most important decisions made in recent times to address the mental health crisis in this country,” Robert Gebbia, CEO of the American Foundation for Suicide Prevention, told MHW. “It’s a landmark, but there is a lot more we still need to do.” (See “Upcoming 988 first anniversary reveals progress, but more work still needed,” MHW, June 26, 2023; https://doi.org/10.1002/mhw.33688.)
A cross-sectional study published last year revealed that use and awareness of the 988 Lifeline was significantly higher among individuals with serious and moderate psychological distress. Approximately 1 in 20 respondents with serious distress had used the 988 Lifeline, but only about one-third of these users responded that they would be very likely to use it in the future. The JAMA Network Open study also represented the first time that research had been conducted from the perspective of individuals in psychological distress. (See “Most people in serious psychological distress more aware of 988,” MHW, Nov. 13, 2023; https://doi.org/10.1002/mhw.33856.)
“Only a minority of people with mental illness even know that 988 exists,” Ron Manderscheid, Ph.D., former executive director and CEO of the National Association of County Behavioral Health & Developmental Disability Directors and the National Association for Rural Mental Health, told MHW in an interview last week. “If individuals in crisis used 988 in the past, only a tiny percentage said they would use it again in the future.”
Manderscheid added, “We have a front door but no system behind it. The government is spending money to build a house behind that front door.”
FDA Approves Novel Treatments For PPD, Alzheimer’s Disease
The U.S. Food and Drug Administration (FDA) last year approved Zurzuvae (zuranolone), the first medication to treat postpartum depression (PPD) in adults. The move is considered an important step forward according to experts who treat PPD. Until now, treatment for PPD was only available as an IV injection given by a health care provider in certain health care facilities.
The efficacy of Zurzuvae for the treatment of PPD in adults was demonstrated in two randomized, double-blind, placebo-controlled, multicenter studies. The primary endpoint of both studies was the change in depressive symptoms using the total score from the 17-item Hamilton depression rating scale (HAMD-17) measured at day 15. Patients in the Zurzuvae groups showed significantly more improvement in their symptoms compared to those in the placebo groups. The treatment effect was maintained at day 42 — four weeks after the last dose of Zurzuvae.
“I am encouraged,” Inger Burnett-Zeigler, Ph.D., associate professor of psychiatry and behavioral sciences at Northwestern University Feinberg School of Medicine, told MHW. Prior to this new treatment in pill form, the most common treatment for PPD was therapy, of which she is a big proponent, said Burnett-Zeigler. “This new treatment is an important option for physicians to have in their toolbox for the patients they’re working with.” (See MHW, “FDA approves first-ever oral pill for postpartum depression,” Aug. 16, 2023 https://doi.org/10.1002/mhw.33750).
The FDA on Jan. 6, 2023, approved Leqembi (lecanemab-irmb) via its accelerated approval pathway for the treatment of Alzheimer’s disease, the agency announced in a FDA news release. Leqembi is the second of a new category of medications approved for Alzheimer’s disease that target the fundamental pathophysiology of the disease. These medications represent an important advancement in the ongoing fight to effectively treat Alzheimer’s disease, FDA officials stated.
“Alzheimer’s disease immeasurably incapacitates the lives of those who suffer from it and has devastating effects on their loved ones,” said Billy Dunn, M.D., formerly director of the Office of Neuroscience in the FDA’s Center for Drug Evaluation and Research. “This treatment option is the latest therapy to target and affect the underlying disease process of Alzheimer’s instead of only treating the symptoms of the disease,” Dunn said. (See MHW, “FDA approves new treatment for Alzheimer’s disease,” Jan. 16, 2023; https://onlinelibrary.wiley.com/doi/full/10.1002/mhw.33505.)
Medicaid Redetermination
A planned lifting of the COVID-19 public health emergency last year marked an important milestone in the nation’s response to the pandemic, but also launched a period of uncertainty for Medicaid beneficiaries and the providers that treat them. After three years of continuous enrollment in which states left their Medicaid rolls virtually untouched, all beneficiaries now face redetermination of their eligibility and at least the potential for loss of coverage.
States have embarked on a 12-month unwinding period in which they will conduct an eligibility redetermination process for every Medicaid and Children’s Health Insurance Program beneficiary. “The volume of renewals and other eligibility actions that states will need to initiate during the 12-month unwinding period creates risk that eligible beneficiaries will be inappropriately terminated,” a report from the Centers for Medicare & Medicaid Services (CMS) stated. (See “States prepare to avert problems as Medicaid rolls stand to be pared down,” MHW, April 24, 2023; https://onlinelibrary.wiley.com/doi/full/10.1002/mhw.33611).
The Kaiser Family Foundation (KFF) reported that while the number of Medicaid enrollees who may be disenrolled during the unwinding period is highly uncertain, KFF estimates that between 7.8 million and 24.4 million people could lose Medicaid coverage during the 12-month unwinding period, reflecting an 8% to 28% decline in enrollment. If Medicaid enrollment decreased by 18%, the midpoint of the range, 17 million people would lose Medicaid coverage. Eligible individuals are at risk for losing coverage if they do not receive or understand notices or forms requesting additional information to verify eligibility or do not respond to requests within required timeframes, according to KFF.
Rosalynn Carter
Tributes poured in to describe the life and legacy of former First Lady Rosalynn Carter, a true champion in the mental health field, who died on Nov. 19 at the age of 96. Among her decades-long achievements and contributions, Mrs. Carter was also an advocate for mental health care and treatment and helped former President Jimmy Carter establish a Presidential Commission on Mental Health. Mrs. Carter and the former president, in partnership with Emory University, founded The Carter Center, a nonprofit governmental organization to advance human rights, alleviate human suffering and improve mental health care and quality of life for individuals in more than 80 countries.
Mrs. Carter also assisted with local and global behavioral health efforts and helped influence key mental health legislation, including the Mental Health Parity and Addiction Equity Act (MHPAEA), and in 1980, the Mental Health Systems Act, which focused on the needs of minorities, children, rural citizens and older adults.
Judy Fitzgerald worked for Mrs. Carter and for The Carter Center Mental Health Program from 1994–1998. “People often underestimated Mrs. Carter because of her soft-spoken nature, but her tenacity was unrivaled, and her persistence was indomitable,” Fitzgerald told MHW. “She sought the guidance of experts but held the voices of individuals with mental illness and their families in equal regard. People were drawn to tell her their stories, not only because she was empathetic, but because she truly believed that recovery was possible.” (See MHW, “Rosalynn Carter remembered as true champion, leader in mental health field,” Dec. 4, 2023; https://doi.org/10.1002/mhw.33868.)
Parity Proposed Rules
The U.S. Departments of Labor, Health and Human Services, and the Department of the Treasury in 2023 announced proposed rules to strengthen MHPAEA, signed into law in 2008. The Biden administration has issued proposed rules that would not only eliminate discrimination of people with mental health issues and substance use disorders (SUDs), but also require plans to act if there are disparities in consumers’ ability to access care as well as data reports in order to evaluate the plans’ compliance. The proposed rule also aims to bring more providers in-network.
Among other provisions, the new rule would force insurance companies to adhere to current laws stipulating that mental health care must be covered, the same as physical health care (see “Proposed parity federal rule aims to boost MH coverage, increase service access,” MHW, July 31, 2023; https://doi.org/10.1002/mhw.33729).
Biden budget
The Biden administration recently released its FY 24 budget proposal and when it comes to mental health, the news overall is encouraging. Significant investments would include $2 billion for a Mental Health System Transformation Fund to expand access to mental health services through workforce development and service expansion, and $10.8 billion overall for SAMHSA.
Additionally, the president’s budget provides historic investments in the behavioral health workforce programs, youth mental health care, Certified Community Behavioral Health Clinics (CCBHCs), community mental health centers and mental health research. According to the budget proposal, SAMHSA would provide $836 million for the 988 crisis hotline, an increase of $334 million. In 2020, Congress designated the new 988 dialing code to operate through the existing National Suicide Prevention Lifeline. (See “President’s FY 24 budget proposes funding increases for 988, CCBHCs), MHW, March 20, 2023; https://doi.org/10.1002/mhw.33575).
“One of several major themes in 2023 is how the field is going to move President Biden’s 2024 budget forward?” Manderscheid said. He noted a number of key mental health and behavioral health investments in the new budget, including funding for training professionals and paraprofessionals in behavioral health care. “This is critical for behavioral health because of the human resource crisis,” he said.
Biden’s efforts to bring Medicare under parity requirement is also very critical in behavioral health care, and an issue that has been another piece in the budget over the last seven years, Manderscheid noted. “Medicare doesn’t operate at parity in benefits,” he said. “We have parity in Medicare co-pays but not in benefits.”
Wit v. UBH update
It was more than three years ago when a groundbreaking decision by a North Carolina district court found that United Behavioral Health (UBH) had illegally denied coverage for mental health and SUDs based on flawed medical necessity criteria. In more recent developments, a three-judge panel on Jan. 26, 2023, reversed that decision, ruling that it is “not unreasonable” for insurers to determine coverage that is inconsistent with generally accepted standards of care (GASC).
The three-judge panel found that “While the GASC pre-condition mandates that a treatment be consistent with GASC as a starting point, it does not compel UBH to cover all treatment that is consistent with GASC. Nor does the exclusion — or any other provision in the plans — require UBH to develop guidelines that mirror GASC.”
“We think the panel’s latest ruling is unacceptable,” David Lloyd, chief policy officer at The Kennedy Forum, told MHW. The panel held that plaintiffs had no right to reprocess claims, he said, adding that a rehearing is the next step in this process. According to The Kennedy Forum, “This new ruling held that even though UBH violated both its fiduciary duty by creating medical necessity criteria that put its self-interest ahead of plan members’ and the laws of four states (Connecticut, Illinois, Rhode Island and Texas), more than 50,000 individuals denied mental health or addiction coverage have no right to reprocessing of their claims.”
The Kennedy Forum is supporting the push for an en blanc hearing before the full Ninth Circuit court, Lloyd noted. (See “Field responds to Wit v. UBH reverse ruling, pushing for case to be reheard. Feb. 17, 2023. https://onlinelibrary.wiley.com/doi/10.1002/mhw.33543
Future Challenges
2024 is going to be a “watershed year” for behavioral health and mental health in terms of the presidential elections and the potential shift in the House of Representatives and Senate, said Manderscheid. “The future well-being of mental health is tied to whatever happens in those elections,” he said. We can’t say this is not our problem, this is not our issue. We have to speak up.”
Manderscheid added, “In 2024, we have to be mobilizing voters from our own field, mobilizing consumers, and people in recovery and indicating to them how very important this year will be for us, but also for the future of mental illness.”
The way behavioral health is measured will change for the field going forward. “We will not measure it in the traditional way we did before,” in terms of the specific number of visits or a change in diagnosis, for example, said Manderscheid. “We are going to measure behavioral health in terms of well-being. That change has already begun, but it is not yet complete in behavioral health care.”