{"id":894762,"date":"2026-10-26T02:08:13","date_gmt":"2026-10-26T02:08:13","guid":{"rendered":"https:\/\/www.newsbeep.com\/us\/894762\/"},"modified":"2026-10-26T02:08:13","modified_gmt":"2026-10-26T02:08:13","slug":"mgbs-closure-of-pandas-pans-care-program-draws-backlash","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/us\/894762\/","title":{"rendered":"MGB’s closure of PANDAS\/PANS care program draws backlash"},"content":{"rendered":"

Panton is one of hundreds of patients<\/a> who received what they describe as life-changing care through a specialized program at Mass General Brigham for Children. The program is one of only a few of its kind nationwide serving children with PANDAS and the related condition PANS, pediatric acute-onset neuropsychiatric syndrome. <\/p>\n

But in August, the hospital system informed families that it plans to shutter the program, which aimed to address the condition\u2019s medical and psychiatric concerns, in January.<\/p>\n

In a statement, MGB said the move to end its PANS\/PANDAS services as they had been offered came after a \u201ccareful review\u201d of its clinical model.<\/p>\n

\u201cWe do not have the multidisciplinary services needed to safely sustain a full PANS\/PANDAS program that meets national clinical standards of care,\u201d the statement reads.<\/p>\n

Now a Massachusetts-based PANS\/PANDAS advocacy group has sent a letter to the state attorney general\u2019s office saying the hospital has not provided clear answers about why it\u2019s closing the program and requesting an independent review of the closure plan. The group also raised concerns about whether the hospital\u2019s actions constitute patient abandonment.<\/p>\n

\u201cThe facts do not support what\u2019s been claimed in the letter,\u201d MGB said.<\/p>\n

The decision comes as the condition continues to be a subject of debate within the medical community, in part because doctors don\u2019t fully understand what causes it. <\/p>\n

The American Academy of Pediatrics called PANS \u201clikely a valid diagnosis\u201d in a recent clinical report<\/a>, but said more research on the condition is needed and raised concerns about widely used treatments. The AAP considers PANDAS a subset of PANS.<\/p>\n

In Massachusetts, the law requires insurance<\/a> to cover care for PANS and PANDAS, including the treatments the AAP cautioned about.<\/p>\n

The hospital said it would work with patients and their families to find alternative options, but the decision has sparked widespread anger and fear among parents who say they don\u2019t understand why the program is ending and worry that their children will be left without adequate care.<\/p>\n

\u201cThe treatment saved me,\u201d said Panton, now 21 and a student at the University of New Hampshire. \u201cIf I didn\u2019t have that, I\u2019d be on the streets or I\u2019d be in a psychiatric intake unit.\u201d <\/p>\n

The first evidence of what would become known as PANS\/PANDAS came in a landmark 1998 paper<\/a> that described 50 children who developed sudden, severe obsessive-compulsive disorder and tics after being infected with the bacteria that causes strep throat.<\/p>\n

Since then, doctors and researchers have found that the condition may also be triggered or exacerbated by other infections<\/a>, including flu and COVID-19, immune system disruptions, and some environmental exposures. <\/p>\n

Despite improving after initial therapy, symptoms can flare up again and require more treatment. <\/p>\n

\u201cBased on what we have seen, it seems anything that can potentially trigger [an] immune response might be causing a PANS\/PANDAS flare,\u201d said Dr. Yujuan (Julia) Zhang, a pediatric rheumatologist at Tufts Medical Center. \u201cIt\u2019s very hard to predict.\u201d <\/p>\n

Experts are still working to fully understand what causes the condition. Some research shows these patients have an abnormal immune response that leads to inflammation in the body and brain, said Dr. Jennifer Frankovich, director of Stanford\u2019s Immune Behavioral Health Clinic & Research Program. Researchers have also found that antibodies generated in response to strep can mistakenly react with parts of the brain involved in movement, behavior, and emotion, Frankovich said.<\/p>\n

The syndrome is characterized by the unusually abrupt and dramatic onset of obsessive-compulsive symptoms or severely restricted eating along with other sudden changes in behavior or functioning, Frankovich said.<\/p>\n

Jennifer Vitelli of Marshfield remembers the morning her son woke up a completely different child. <\/p>\n

The boy, 9 years old at the time, spoke in an unsettling baby voice and could no longer brush his teeth or tie his shoes. He had recently finished all the Harry Potter books, but now wasn\u2019t able to read or add two numbers together.<\/p>\n

\u201cMy husband and I were absolutely terrified,\u201d Vitelli said.<\/p>\n

Doctors told the parents their son was at the age where children are known to develop neurological or psychiatric conditions such as Tourette\u2019s syndrome and bipolar disorder. But Vitelli said her gut was telling her something else was happening. <\/p>\n

\u201cHe became literally a shell of the child that he was,\u201d she said. Her son was eventually diagnosed with PANDAS and received care at MGB.<\/p>\n

It\u2019s unclear exactly how many children and young adults have PANS or PANDAS. Frankovich said a conservative estimate based on a 2023 peer-reviewed study<\/a> of medical records suggests that at least 3,400 new cases occur in the United States each year and roughly 170,000 Americans are living with the condition. <\/p>\n

It\u2019s likely underdiagnosed, Zhang said. In the last two years, she said she has seen more than 580 patients.<\/p>\n

There are no FDA-approved diagnostic tests. Physicians make a diagnosis based on a person\u2019s history and symptoms, many of which are common among pediatric patients and are often more likely to be related to a psychiatric disorder, Frankovich said. <\/p>\n

\u201cThe defining feature is the speed,\u201d she said. \u201cA child may develop several severe symptoms over hours or a few days. That pattern differs from the more gradual onset typical of many psychiatric and developmental conditions.\u201d <\/p>\n

\"TaiteTaite Panton talked to his mother, Kim, in the kitchen before receiving his treatment.Debee Tlumacki<\/p>\n

Treatment consists of first dealing with the trigger, if it\u2019s still present. Patients might receive antibiotics or anti-inflammatory treatments, such as ibuprofen. People with more severe cases may require infusions of healthy antibodies, a treatment known as intravenous immunoglobulin, or IVIG. While patients are being treated for the inflammatory problem, Frankovich said doctors might also simultaneously treat behavioral symptoms, with cognitive behavioral therapy or other kinds of therapy and medication, including antidepressants. <\/p>\n

But parents and PANS\/PANDAS providers say many health care professionals are either not familiar with or, in some cases, skeptical of the diagnosis and treatment. Sick children, for instance, are often initially referred to psychiatric services. <\/p>\n

\u201cIt\u2019s just challenging for the medical community to think patients with a medical condition actually can present with psychiatric symptoms,\u201d Zhang said. <\/p>\n

Meanwhile, finding care remains challenging. There are fewer than 10 multidisciplinary clinics<\/a> nationwide that treat the disorder, according to the PANDAS Physicians Network<\/a>, part of the Foundation for Brain Science and Immunology, a nonprofit.<\/p>\n

In New England, aside from a few providers at MGB and Tufts Medical Center, Dartmouth<\/a> also offers care. There are also independent providers<\/a> in the region, including pediatricians, psychiatrists, and nurse practitioners. <\/p>\n

Families of children who are eventually diagnosed share a similarly lengthy, emotionally taxing, and costly experience in their search for treatment. <\/p>\n

Kim Panton, Taite\u2019s mother, learned about the condition from a psychiatric nurse practitioner he had just started seeing because he was diagnosed with bipolar disorder, ADHD, and depression. Taite had been on a cocktail of psychiatric medications for about a year and wasn\u2019t getting better. Then, he woke up with uncontrollable, full-body tics. <\/p>\n

Frantic and crying, Panton called the nurse practitioner. She immediately told Panton she knew what was wrong and asked the mother to come see her the next day. <\/p>\n

\u201cThis is like a sci-fi movie,\u201d Panton, 58, recalled thinking as the nurse practitioner explained PANS\/PANDAS.<\/p>\n

Panton left the visit with a prescription for antibiotics. Within a day, Taite\u2019s tics stopped. The nurse practitioner recommended he try IVIG. <\/p>\n

Unable to get an appointment at MGB, which had a lengthy waitlist, the Duxbury residents flew to Washington, D.C., to see a doctor there. The physician was out-of-network and the treatment would cost $15,000. Panton handed over her credit card without hesitation. <\/p>\n

\u201cWeeks after that, we had our son back,\u201d she said. <\/p>\n

Eventually, the family was able to see Dr. Mark Pasternack, a pediatric infectious disease doctor who treats children with the condition at MGB.<\/p>\n

There, the Pantons had full insurance coverage, and Taite could get infusions without traveling.<\/p>\n

\u201cIt changed everything for us,\u201d Kim Panton said. <\/p>\n

In high school, Taite ran cross country and was a competitive mountain biker, often winning titles in races across New England.<\/p>\n

Last August, when he experienced a symptom flare, he was able to get IVIG treatment at home. <\/p>\n

\u201cI don\u2019t want to go back to the way I was,\u201d he said. \u201cIt\u2019s like you\u2019re possessed. You\u2019re taken over by something.\u201d <\/p>\n

\"KristinKristin Ferrone and her daughter Justine wore PANDAS bracelets. Mass. General is closing its PANS\/PANDAS treatment program at the end of the year.Suzanne Kreiter\/Globe Staff<\/p>\n

MGB\u2019s PANS\/PANDAS program launched in 2013, and for many years mostly involved Pasternack and Dr. Kyle Williams, a psychiatrist. <\/p>\n

By 2024, the program had logged more than 3,000 patient visits and completed more than 1,500 new evaluations, according to a fund-raising email sent in September that year, which was provided to the Globe by the Look. Foundation, the local advocacy group.<\/p>\n

In January, families of patients were told that Pasternack was going on medical leave. For care during his absence, some parents said they were directed to Williams and Zhang, the Tufts doctor.<\/p>\n

Then, in August, MGB notified patients through a message in their patient portals that the program was closing.<\/p>\n

Patients could continue to access care through the hospital\u2019s child and adolescent psychiatry service, a message said. If parents had questions about antibiotics or immunotherapies, they were informed that the psychiatry team would coordinate referrals to other specialists at the hospital. The letter also encouraged parents to contact their children\u2019s primary care providers.<\/p>\n

The notice left Kristin Ferrone of Wilmington stunned. <\/p>\n

\u201cI don\u2019t know where any of these patients will go,\u201d said Ferrone, whose 15-year-old daughter has been receiving care at MGB since she was 5. <\/p>\n

\u201cPeople need help,\u201d she added, calling the decision to close the program \u201cmorally very wrong.\u201d <\/p>\n

In response to questions from the Globe about the closure, MGB said it will continue to provide care through the hospital\u2019s child and adolescent psychiatry department, pediatric infectious disease specialists, and primary care providers. <\/p>\n

\u201cWe recognize that children diagnosed with PANS\/PANDAS can experience severe and disabling symptoms, with a profound impact on them and their families,\u201d MGB said. The decision to close the program \u201cdoes not mean that we are dismissing these children\u2019s symptoms or their need for care.\u201d<\/p>\n

Pasternack has returned from leave and is seeing PANS\/PANDAS patients to assist them with a transition plan, MGB said. In response to the Globe\u2019s request to interview Pasternack, MGB referred to its statement and a spokesperson offered to address additional questions.<\/p>\n

The hospital noted that its decision to end the program \u201cis not tied to the availability or return of any one physician.\u201d <\/p>\n

\"JustineJustine Ferrone (right), a PANDAS patient who receives care at MGB, with her mother, Kristin.Suzanne Kreiter\/Globe Staff<\/p>\n

Vitelli, who had three children diagnosed with the condition and received care at MGB, said parents have struggled to understand why the hospital would end its program. <\/p>\n

Vitelli, now executive director of the Look. Foundation, and other advocates successfully pushed for legislation<\/a> that led to mandated insurance coverage in Massachusetts for PANS\/PANDAS care, including IVIG treatment. Over the years, Vitelli said she and other parents have met with MGB leadership on issues related to sustaining the program, including adding more dedicated staffing. <\/p>\n

The closure \u201cis devastating because it eliminates one of the few medical pathways available to these children,\u201d Vitelli said.<\/p>\n

Earlier this month, the Department of Public Health\u2019s PANDAS\/PANS Advisory Council sent a five-page letter to Dr. Robbie Goldstein, the state\u2019s health commissioner, imploring him to take action on the issue. <\/p>\n

The council<\/a>, which includes parents, advocates, and health care providers, asked for state health officials to review MGB\u2019s closure and transition plan, including whether established patients had a \u201cviable pathway for continuing care, and whether the circumstances raise patient safety, continuity-of-care, or potential patient abandonment concerns.\u201d The council also urged health officials to push the hospital to maintain its treatment program through at least January 2028. <\/p>\n

Meanwhile, parents continue to scramble for alternative care options. <\/p>\n

\u201cWe\u2019re on as many waiting lists as I know about,\u201d said Amy Donovan, 53, whose teenage daughter is still recovering. The Milton resident said she and her husband discussed the possibility of a program in Indiana. <\/p>\n

\u201cWe\u2019ll drive anywhere,\u201d she said. <\/p>\n

Allyson Chiu can be reached at allyson.chiu@globe.com<\/a>. Follow her on X @_allysonchiu<\/a>.<\/p>\n