Category: Department of Health and Human Services

  • HHS Condemns Gender-Affirming Care in Report That Finds ‘Sparse’ Evidence of Harm – The 74

    HHS Condemns Gender-Affirming Care in Report That Finds ‘Sparse’ Evidence of Harm – The 74


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    This story was originally reported by Orion Rummler of The 19th. Meet Orion and read more of his reporting on gender, politics and policy.

    On Thursday, the Department of Health and Human Services (HHS) published a 400-page analysis of research on gender-affirming care for transgender youth, as directed by President Donald Trump. The agency used the release of the report to declare that available science does not support providing gender-affirming care to trans youth. LGBTQ+ advocacy groups worry the report will be used to further restrict gender-affirming care and to change medical guidelines in ways that harm trans youth.

    The president mandated the report in an executive order condemning the medical treatment — without evidence — as a form of mutilation, amid a broader push by the administration to exclude trans people from public life. Trump’s order asked the health agency to review the “best practices for promoting the health of children who assert gender dysphoria,” while pressuring youth clinics to halt treatment or lose federal funding.

    Now, the HHS has produced that report. The agency combed through research on the outcomes of puberty blockers, hormone replacement therapy, social transition, psychotherapy, and the rare cases of surgeries on adolescents and young adults diagnosed with gender dysphoria. 

    Gender dysphoria, the reason that most trans people undergo gender-affirming care, is a strong and persistent distress felt when one’s body is out of sync with their gender identity. Without treatment, gender dysphoria can lead to severe negative impacts in day-to-day life. 

    The agency states in its executive summary of the report that the document is not meant to provide clinical practice guidelines or issue legislative or policy recommendations. However, the report does imply that health care providers should refuse to offer gender-affirming care to adolescents and young adults on the basis that such care comes with the potential for risk — despite little evidence for that risk actually being found in the report. 

    “The evidence for benefit of pediatric medical transition is very uncertain, while the evidence for harm is less uncertain,” the executive summary states. “When medical interventions pose unnecessary, disproportionate risks of harm, healthcare providers should refuse to offer them even when they are preferred, requested, or demanded by patients.”

    In its research review, the HHS determined that evidence measuring the effects of gender-affirming care on psychological outcomes, quality of life, regret and long-term health is of “very low” quality. This conclusion ignores decades of research, as well as a recent survey of more than 90,000 transgender people in the United States that found an overwhelming majority report more life satisfaction after having transitioned. Access to gender-affirming care has been linked to lower odds of suicidality and depression in trans youth, while gender-affirming surgeries have been found to lower psychological distress for adults.

    Even when analyzing research that the administration deemed low-bias, the HHS found “sparse” to no evidence of harm from gender-affirming care. What’s more, the report frequently found evidence demonstrating the benefits of gender-affirming care — though it ultimately downplays those findings as not significant. 

    Available research on puberty blockers found high satisfaction ratings and low rates of regret. A systematic review of hormone replacement therapy described improved gender dysphoria and body satisfaction. Another found that hormone treatment leads to improved mental health. Two before-and-after studies reported reduced treatment needs or lower levels of suicidality and self-harm after hormone treatment. When measuring safety outcomes of hormone treatment, side effects did not have a major impact on treatment and complications were limited. 

    Despite these findings, the Department of Health and Human Services advertised the report in a Thursday news release as one that “highlights a growing body of evidence pointing to significant risks” of gender-affirming care. At the White House briefing room Thursday, deputy chief of staff for policy Stephen Miller touted the new report and attributed the idea of being transgender as part of a “cancerous communist woke culture” that is “destroying this country.” 

    There are side effects to many of the medications that transgender people — and cisgender people — take to receive gender-affirming care, as is the case with most medical treatments. These side effects, like the risk of decreased bone density when taking puberty blockers, are closely monitored and treated by doctors and communicated to patients.

    LGBTQ+ advocacy organizations denounced the report as a political attack on transgender youth. Multiple groups said that the report’s endorsement of psychotherapy as a “noninvasive alternative” to puberty blockers and hormone treatment amounts to an endorsement of conversion therapy — a practice wherein mental health professionals try to change a youth’s sexual orientation or gender identity.

    “It is already clear that this report is a willful distortion of the evidence intended to stoke fear about a field of safe and effective medicine that has existed for decades, in order to justify dangerous practices which amount to conversion therapy,” said Sinead Murano Kinney, health policy analyst at Advocates for Trans Equality. 

    The Human Rights Campaign, the country’s largest LGBTQ+ rights organization, accused the HHS of producing a report that is attempting to lay the groundwork to replace medical care for trans and nonbinary people with conversion therapy. 

    “Trans people are who we are. We’re born this way. And we deserve to live our best lives and have a fair shot and equal opportunity at living a good life,” said Jay Brown, chief of staff at the Human Rights Campaign. “This report … lays the groundwork to push parents and doctors aside and allow politicians to subject our kids to the debunked practice of conversion therapy.” 

    No authors or contributors are named in the report or in its executive summary. The agency says these names are being initially withheld to “maintain the integrity of this process,” and states that chapters of the document were subject to peer review.


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  • Arizona Autism Charter School Founder Tapped as DOE Special Education Chief – The 74

    Arizona Autism Charter School Founder Tapped as DOE Special Education Chief – The 74

    The founder and executive director of a network of Arizona charter schools serving autistic children has been named the U.S. Education Department’s deputy assistant secretary for special education and rehabilitative services. Education Secretary Linda McMahon made the announcement while touring the Arizona Autism Charter Schools’ Phoenix location.

    Diana Diaz-Harrison, whose son is autistic, said that in her new job she hopes to continue her efforts to help others launch autism charter schools throughout the country. Her schools, she said in remarks captured on video by AZ Central, are a testament to what happens “when parents like me are empowered to create solutions.”

    “My vision is to expand school choice for special needs families — whether through charter schools, private options, voucher programs, or other parent-empowered models,” she said in a statement to The 74. .

    The five-school network uses a controversial intervention that attempts to train children to appear and behave like their neurotypical peers. Created by the researcher behind LGBTQ conversion therapy, applied behavior analysis, or ABA, is widely depicted as the gold standard despite scant independent evidence of its effectiveness and mounting research documenting its harms. 

    Diaz-Harrison opened the network’s first school in 2014 as a free, public alternative to private schools for autistic children, which are popular in Arizona but typically charge tens of thousands of dollars a year in tuition. Her Arizona charter schools are a 501(c)3 nonprofit financed by state and federal per-pupil funds. ABA is specifically endorsed by Arizona education officials as a strategy to use with autistic students.

    In the time since those charters opened, ABA has grown to be a national, multi-billion-dollar industry, with for-profit companies tapping public and private insurance to pay for as much as 40 hours a week of one-on-one therapy. The intervention uses repeated, rapid-fire commands that bring rewards and punishments to change a child’s behavior and communication style.

    A 74 investigation last year showed that most data supporting ABA’s effectiveness is drawn from research conducted by industry practitioners. Independent analyses, including a years-long U.S. Department of Defense review, found little evidence the intervention works. Former patients who underwent the therapy as children reported severe, lasting mental health effects, including PTSD.

    Diaz-Harrison told The 74 the therapy is both valuable and sought-after. “For the autism community, specifically, many families seek schools that integrate positive behavioral strategies,” she says. “The evidence supporting behavioral therapy is extensive and well-established. It has been endorsed by the U.S. surgeon general and the American Academy of Pediatrics as an effective, research-backed approach for individuals with autism.”

    During her visit, McMahon told students and staff she was eager to tell President Donald Trump about the schools. “He doesn’t believe any child, whether they have neuro-difficulties or any other problems, should be trapped in a school and not have the facilities that they need,” she said. 

    Since Trump’s second inauguration, he has issued numerous orders that have alarmed disability advocates and the autistic community. Though both edicts contradict longstanding federal laws, in March he ordered the closure of the Education Department and said responsibility for special education will be transferred to the U.S. Department of Health and Human Services.

    About half of the Education Department’s staff has been fired, including most of the people responsible for investigating what had been a backlog of some 6,000 disability discrimination complaints. Though it’s unclear whether Trump and McMahon may legally disregard special education funding laws and allow states to spend federal dollars as they see fit, both have said they favor giving local officials as much decision-making power as possible.

    Meanwhile, HHS Secretary Robert F. Kennedy Jr. has stoked fear in the autistic community by announcing a new effort to tie autism to vaccines or other “environmental toxins” — a hypothesis discredited by dozens of studies. The man he appointed to head the study has been cited for practicing medicine without a license and prescribing dangerous drugs to autistic children. 

    Last week, the new head of the National Institutes of Health announced that an unprecedented compilation of medical, pharmaceutical and insurance records would be used to create an autism “disease registry” — a kind of list historically used to sterilize, institutionalize and even “euthanize” autistic people. HHS later walked back the statement, saying the database under construction would have privacy guardrails.

    Among other responsibilities, the offices Diaz-Harrison will head identify strategies for improving instruction for children with disabilities and ensure that as they grow up, they are able to be as independent as possible. The disability community has raised concerns that the administration is retreating from these goals.   

    Advocates have said they fear the changes pave the way for a return to the practice of separating students with disabilities in dedicated special ed classrooms rather than having them attend class with typically developing peers. The Individuals with Disabilities in Education Act guarantees special education students the right to instruction in the “least restrictive environment” possible.          

    Families’ preferences vary widely, with some parents of autistic children refusing any form of behavior therapy, while others want their kids in settings with children who share their needs. Many insist on grade-level instruction in general education classrooms 

    Diaz-Harrison has a master’s degree in education and worked as a bilingual teacher in California early in her career. From the late 1990s until she began supporting her son full time, she worked as a public relations strategist and a reporter and anchor for the Spanish-language broadcast network Univision. 

    In 2014, frustrated with her son’s school options, she organized a group of parents and ABA providers who applied for permission to open what was then a single K-5 school serving 90 children. The network now has about 1,000 students in all grades and features an online program. 

    At the end of the 2023-24 academic year, 9% of the network’s students scored proficient or highly proficient on Arizona’s annual reading exam, while 4% passed the math assessments.      

    In December 2022, the network won a $1 million Yass Prize, an award created by Jeff and Janine Yass. The billionaire investors have a long track record of donating to Republican political candidates and organizations that support school choice. 

    One of the award’s creators, Jeanne Allen, is CEO of the Center for Education Reform. The center nominated Diaz-Harrison for the federal role. 

    Yass award winners were featured at the 2023 meeting of the American Legislative Exchange Council, or ALEC, a conservative forum where state lawmakers are given model bills on education and other policies to introduce in their respective statehouses. 

    Diaz-Harrison has partnered with a Florida autism school to create a national charter school accelerator program to help people start schools like hers throughout the country. She told The 74 the effort has so far supported teams of hopeful school founders from Louisiana, Texas, Florida, Alabama and Nevada. 

    Parents of young autistic children and autistic adults often disagree about ABA. Told by their pediatrician or the person who diagnosed their child as autistic that they have a narrow window in which to intervene, families fight to get the therapy. Adults who have experienced it, however, report lasting trauma and have lobbied for research — much of it now at risk of being defunded by Kennedy — into more effective and humane alternatives.


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  • Parents, Medical Providers, Vaccine Experts Brace for RFK Jr.’s HHS Takeover – The 74

    Parents, Medical Providers, Vaccine Experts Brace for RFK Jr.’s HHS Takeover – The 74


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    While Robert F. Kennedy Jr. ‘s Senate confirmation to head the Department of Health and Human Services was not unexpected, it still shook medical providers, public health experts and parents across the country. 

    Mary Koslap-Petraco, a pediatric nurse practitioner who exclusively treats underserved children, said when she heard the news Thursday morning she was immediately filled with “absolute dread.”

    Mary Koslap-Petraco is a pediatric nurse practitioner and Vaccines for Children provider. (Mary Koslap-Petraco)

    “I have been following him for years,” she told The 74. “I’ve read what he has written. I’ve heard what he has said. I know he has made a fortune with his anti-vax stance.”

    She is primarily concerned that his rhetoric might “scare the daylights out of people so that they don’t want to vaccinate their children.” She also fears he could move to defund Vaccines for Children, a program under the Centers for Disease Control and Prevention that provides vaccines to kids who lack health insurance or otherwise wouldn’t be able to afford them. While the program is federally mandated by Congress, moves to drain its funding could essentially render it useless.

    Koslap-Petraco’s practice in Massapequa Park, New York relies heavily on the program to vaccinate pediatric patients, she said. If it were to disappear, she asked, “How am I supposed to take care of poor children? Are they supposed to just die or get sick because their parents don’t have the funds to get the vaccines for them?” 

    And, if the government-run program were to stop paying for vaccines, she said she’s terrified private insurance companies might follow suit. 

    Vaccines for Children is “the backbone of pediatric vaccine infrastructure in the country,” said Richard Hughes IV, former vice president of public policy at Moderna and a George Washington University law professor who teaches a course on vaccine law.

    Kennedy will also have immense power over Medicaid, which covers low-income populations and provides billions of dollars to schools annually for physical, mental and behavioral health services for eligible students.

    If Kennedy moves to weaken programs at HHS, which experts expect him to do, through across-the-board cuts in public health funding that trickle down to immunization programs or more targeted attacks, low-income and minority school-aged kids will be disproportionately impacted, Hughes said. 

    “I just absolutely, fundamentally, confidently believe that we will see deaths,” he added.

    Anticipating chaos and instability

    Following a contentious seven hours of grilling across two confirmation hearings, Democratic senators protested Kennedy’s confirmation on the floor late into the night Wednesday. The following morning, all 45 Democrats and both Independents voted in opposition and all but one Republican — childhood polio survivor Mitch McConnell of Kentucky — lined up behind President Donald Trump’s pick.

    James Hodge, a public health law expert at Arizona State University’s Sandra Day O’Connor College of Law, said that while it was good to see senators across the political spectrum asking tough questions and Kennedy offering up some concessions on vaccine-related policies and initiatives, he’s skeptical these will stick.

    “Whatever you’ve seen him do for the last 25 to 30 years is a much, much greater predictor than what you saw him do during two or three days of Senate confirmation proceedings,” Hodge said. “Ergo, be concerned significantly about the future of vaccines, vaccine exemptions, [and] how we’re going to fund these things.”

    Hodge also said he doesn’t trust how Kennedy will respond to the consequences of a dropoff in childhood vaccines, pointing to the current measles outbreak in West Texas schools.

    “The simple reality is he may plant misinformation or mis-messaging,” he said.

    During his confirmation hearings, Kennedy tried to distance himself from his past anti-vaccination sentiments stating, “News reports have claimed that I am anti-vaccine or anti-industry. I am neither. I am pro-safety … I believe that vaccines played a critical role in health care. All of my kids are vaccinated.”

    He was confirmed as Linda McMahon, Trump’s nominee to head the Department of Education, was sitting down for her first day of hearings. At one point that morning, McMahon signaled an openness to possibly shifting enforcement to HHS of the Individuals with Disabilities Education Act — a federal law dating back to 1975 that mandates a free, appropriate public education for the 7.5 million students with disabilities — if Trump were to succeed in shutting down the education department.

    This would effectively put IDEA’s $15.4 billion budget under Kennedy’s purview, further linking the education and public health care systems.

    In a post on the social media site BlueSky, Randi Weingarten, president of the American Federation of Teachers, wrote she is “concerned that anyone is willing to move IDEA services for kids with disabilities into HHS, under a secretary who questions science.”

    Keri Rodrigues, president of the National Parents Union and a parent of a child with ADHD and autism, told The 74 the idea was “absolutely absurd” and would cause chaos and instability. 

    Kennedy’s history of falsely asserting a link between childhood vaccines and autism — a disability included under IDEA coverage — is particularly concerning to experts in this light.

    “You obviously have a contingent of kids who are beneficiaries of IDEA that are navigating autism spectrum disorder,” said Hughes, “Could [we] potentially see some sort of policy activity and rhetoric around that? Potentially.”

    Vaccines — and therefore HHS — are inextricably linked to schools. Currently, all 50 states have vaccine requirements for children entering child care and schools. But Kennedy, who now has control of an agency with a $1.7 trillion budget and 90,000 employees spread across 13 agencies, could pull multiple levers to roll back requirements, enforcements and funding, according to The 74’s previous reporting. And Trump has signaled an interest in cutting funding to schools that mandate vaccines.

    “There’s a certain percentage of the population that is focused on removing school entry requirements,” said Northe Saunders, executive director of the pro-vaccine SAFE Communities Coalition. “They are loud, and they are organized and they are well funded by groups just like RFK Jr.’s Children’s Health Defense.”

    Kennedy will also have the ability to influence the makeup of the committees that approve vaccines and add them to the federal vaccine schedule, which state legislators rely on to determine their school policies. Hodge said one of these committees is already being “re-organized and re-thought as we speak.”

    “With him now in place, just expect that committee to start really changing its members, its tone, the demeanor, the forcefulness of which it’s suggesting vaccines,” he added.

    Hughes, the law professor, said he is preparing for mass staffing changes throughout the agency, mirroring what’s already happened across multiple federal departments and agencies in Trump’s first weeks in office. He predicts this will include Kennedy possibly asking for the resignations “of all scientific leaders with HHS.” 

    Kennedy appeared to confirm that he was eyeing staffing cuts Thursday night during an appearance on Fox News’s “The Ingraham Angle.”

    “I have a list in my head … if you’ve been involved in good science, you have got nothing to worry about,” Kennedy said.


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  • Federal Agencies Propose Major Changes to Mental Health Parity Regulations – CUPA-HR

    Federal Agencies Propose Major Changes to Mental Health Parity Regulations – CUPA-HR

    by CUPA-HR | October 11, 2023

    This blog post was contributed by Elena Lynett, JD, senior vice president at Segal, a CUPA-HR Mary Ann Wersch Premier Partner.

    Institutions generally provide comprehensive mental health and substance use disorder (MH/SUD) benefits as part of their commitment to creating a safe and nurturing campus. However, the Mental Health Parity and Addiction Equity Act (MHPAEA) requires that institutions providing MH/SUD benefits ensure parity in coverage between the MH/SUD and medical/surgical benefits. The Department of Health and Human Services, the Department of Labor, and the Department of the Treasury recently proposed major changes to the MHPAEA regulations for group health plan sponsors and insurers.

    The proposed changes address nonquantitative treatment limitations (NQTLs) — a term which references a wide range of medical management strategies and network administrative practices that may impact the scope or duration of MH/SUD benefits. Examples of NQTLs include prior or ongoing authorization requirements, formulary design for prescription drugs, and exclusions of specific treatments for certain conditions.

    If government agencies issue a final rule similar to the proposal, plans will face additional data collection, evaluation, compliance and administrative requirements. The most significant proposed changes are:

    • The “predominant/substantially all” testing that currently applies to financial requirements and quantitative treatment limitations under MHPAEA would apply as a threshold test for any NQTL;
    • New data collection requirements, including denial rates and utilization information;
    • A new “meaningful benefits” standard for MH/SUD benefits;
    • Detailed requirements regarding the documented comparative analysis that plans must have for each applicable NQTL;
    • Introduction of a category of NQTLs related to network composition and new rules aimed at creating parity in medical/surgical and MH/SUD networks;
    • Prohibition on separate NQTLs for MH/SUD;
    • For plans subject to the Employee Retirement Income Security Act of 1974 (ERISA), a requirement that a named fiduciary would have to review and certify documented comparative analysis as complying with MHPAEA; and
    • For non-federal governmental plans, sunset of the ability to opt out of compliance with the MHPAEA rules.

    For more information on the proposed rules, see Segal’s August 1, 2023 insight.

    The deadline to comment on the proposed rules is October 17, 2023. If interested, your institution may file comments here. CUPA-HR will be filing comments with other associations representing higher education and plan sponsors. As proposed, plans could be expected to comply as early as the first day of any plan year beginning on or after January 1, 2025.



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