S1 E6: The Story Behind AB2105, California's Bill to Require Insurance Coverage for PANDAS/PANS Treatment

Pawel Kiela, DVM, PhD currently holds the rank of Professor and has a PANDA endowed chair in Autoimmune Disease Research in the Department of Pediatrics at the University of Arizona Medical School in Tucson. Dr. Kiela is an integral part of the Steele Children’s Research Center which has four integrated branches: basic science, clinical research, clinical care, and teaching to address a range of neuropsychiatric disorders such as PANS, PANDAS, and Sydenham’s Chorea. He is a lead scientist in two Centers of Excellence: Children’s Post-Infectious Autoimmune Encephalopathy and the Daniel Cracciolo Institute for Pediatric Disease Research and the Associate Director of Pediatric Gastroenterology Fellowship Program.Dr. Kiela received his DVM from the Warsaw University of Life Science in Poland and his PhD from the same University and Lund University in Sweden in the developmental physiology of the gastrointestinal tract. His primary research interest is autoimmune and autoinflammatory diseases, especially Crohn’s disease, ulcerative colitis, gut microbiota, mucosal immunology, and extraintestinal manifestations of intestinal inflammation. I am very happy to say that Dr. Kiela, in recent years, has brought  his in-depth understanding of the aforementioned research  areas into the study of PANDAS and PANS. (What good fortune for the PANDAS/PANS community.)When Dr. Kiela isn’t in his lab, you may find him working on his 1962 Airstream travel trailer, a challenging endeavor, he explained as he is essentially bringing his beloved Airstream back to life. This hands-on work keeps his sanity, he joked: “In contrast to the lab work, there are many more opportunities for immediate rewards.”Note: Dr Kiela’s endowed chair has the remarkably coincidental acronym, PANDA, however, in this case stands for “People Acting Now Discover Answers” and is a gift from the Phoenix Women’s Board of the Steele Children’s Research Center.Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.Credits: Music by Kingsley Durant from his "Convertible" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn

Susan Manfull, PhD crossed the pond to speak with Dr. Tim Ubhi, consultant paediatrician and fellow of the United Kingdom’s Royal College of Paediatrics and Child Health.  Dr. Tim, as his patients call him, has dedicated his life to children’s health, beginning with conducting research on using botulinum toxin to help children with cerebral palsy, work for which he was awarded the prestigious Michael Blacow prize by the Royal College of Paediatrics and Child Health to, currently, focusing on treating children with PANDAS, work that has earned him the deepest gratitude  from his over 1200 patients and their families. Dr. Ubhi is the founder of the newly established London PANS Clinic and of the Children’s e-hospital in 2013. He is also a founding member of the UK PANS/PANDAS Physicians Network and is also a member of the Scientific and Medical Advisory Board of the European Immunopsychiatry Association (EXPAND).Dr Ubhi talks about what drew him to pediatrics and to PANDAS and PANS, in particular. The conversation veers into some interesting history underscoring how the slow speed with which medicine changes has affected the recognition and treatment of PANDAS and PANS. And yet, he has plowed forward and opened a clinic in London and has plans to train physicians in this field in the northeast of England, collaborate with practitioners outside of the UK, and conduct research using, for example, innovative techniques such pupillometry. And more -- Dr. Ubhi is clearly making extraordinary advances in the UK.Highly respected in his chosen field in the UK and well beyond, he is in demand to speak at conferences, including by The Alex Manfull Fund Symposium on Neuroimmune Psychiatric Disorders where he will join the Clinical Panel to address questions from physicians and other practitioners about treating persons diagnosed with PANDAS and PANS to be held on November 2, 2024 in Portsmouth, New Hampshire.  (For more information, please visit: https://thealexmanfullfund.org/tamf-2024-symposium/ .)Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.Credits: Music by Kingsley Durant from his "Convertible" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn

In this episode of Untangling PANDAS & PANS, Susan Manfull, PhD talks with April Ronay, founder of California Coalition for PANS/PANDAS (aka, Cal-Coalition), and Shari Strulson, one of the founding members of Cal-Coalition. Both are teachers, by profession, both have a family member with PANS, and both are tirelessly working to pass legislation in California to require insurance companies to provide coverage for doctor-prescribed treatments for PANDAS and PANS. They are currently working to pass AB2105, a bill sponsored by Assembly member Josh Lowenthal.April is a second-grade teacher from Long Beach, California.  Shari is a former fourth-grade and enrichment teacher in Bridgeport, Connecticut who currently resides in Redondo Beach, California.The PANDAS/PANS community is a remarkably close community. Comprised of patients, family members, advocates, policy makers, researchers, and practitioners, this hybrid virtual and in-person community extends across the United States and into many other countries around the world. PANDAS/PANS can be such an excruciatingly debilitating disorder that supportive relationships are easily engendered among care-takers whose care-burden demands often exceed those of Alzheimer’s disease. Many wear multiple hats.  Untangling PANDAS & PANS cover all members of this intertwined community.What drives April and Shari -- who wear parent and advocate hats -- to take on the huge task of passing legislation for the benefit of all?Hear their stories on this podcast episode. Meet them (and many other families and advocates) on Advocacy Day in Long Beach, California on September 14, 2024 (9:00 a.m. to 12:00 p.m.). Eventbrite Advocacy Day Agenda:https://bit.ly/PANS_PANDAS_Advocacy_DayTo send a letter of support to Governor Gavin Newsom (once the bill is on his desk), go to https://www.gov.ca.gov/contact/ for online submission or mail toGovernor Gavin Newsom1021 O Street, Suite 9000Sacramento, CA 95814For more information about Cal-Coalition, visit www.calcoalition.com and follow on Facebook@CalCoalition-for-PansPandas-Advocacy  (other social media handles on website).Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.Credits: Music by Kingsley Durant from his "Convertible" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn

Earl Harley, MD, FACS, FAAPS is a highly regarded pediatric otolaryngologist (Ears, Nose, and Throat doctor or ENT) at Georgetown University Medical Center and a beloved assistant professor at the Medical School. Dr. Harley is widely respected for his expertise in working with patients who have been diagnosed with PANDAS and PANS. Families travel from across the country (and well beyond) for consultations regarding adenotonsillectomies for their children suffering from these neuroimmune psychiatric disorders.Dr Harley received his medical degree from Howard University School of Medicine in Washington, DC. He completed an internship at Walter Reed Hospital (previously named National Naval Medical Center). He did his residency in otolaryngology at Oakland Naval Hospital in California and, later, two pediatric ENT fellowships: Children’s National Medical Center and George Washington University in DC and the Massachusetts Eye and Ear Infirmary and Harvard University in Boston, Massachusetts.At the same time, Dr Harley pursued a remarkable career of over 20 years in the U.S. Navy in various hospitals and on ships. He attributes his career as an ENT to the Navy and his work as a flight surgeon.Susan Manfull, PhD caught up with Dr Harley just as he emerged from surgery — he had just performed a adenotonsillectomy with a patient diagnosed with PANDAS. Learn about his distinguished career spanning over 50 years and about how he came to know about PANDAS and PANS.Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.Credits: Music by Kingsley Durant from his "Convertible" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn

M. Elizabeth “Beth” Latimer, MD is a pioneer in the field of autoimmune encephalitis and is known across the country and in Europe for her expertise in treating PANDAS and PANS. She received her medical degree from Tufts University School of Medicine in Boston, Massachusetts. She completed her residencies in Pediatrics and Neurology at Walter Reed Army Medical Center in Washington, DC with special certification in Child Neurology. She served as chief of the Child Neurology Division at Georgetown University Hospital in Washington, DC for five years, prior to practicing at Fairfax Hospital in Virginia, and then to opening her own practice in Child and Adolescent Neurology in 2000 in Bethesda, Maryland. Currently, Dr. Latimer’s private practice is in Washington, DC, in general neurology with a specialization in caring for patients with PANDAS and PANS.Dr. Latimer is one of the few physicians in this field who has long worked with adult patients, recognizing that post-pubescent individuals could continue to suffer from PANDAS/PANS and that onset could first manifest after puberty.Susan Manfull, PhD sits down with Dr. Latimer over cheese and crackers and sparkling water on a hot afternoon on Cape Cod.  They discuss Dr. Latimer’s career in pediatric neurology, highly respected work that has spanned nearly forty years dedicated to treating patients in a field that still struggles to find a name. Whatever the field be called, Dr. Latimer’s name will certainly have a place in its history and in the hearts of many families.Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.Credits: Music by Kingsley Durant from his "Convertible" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn

Dr. Shannon Delaney, a psychiatrist with expertise in PANDAS/PANS, Lyme, and other vector-borne diseases, talks with Susan Manfull about how these complex disorders present in children and adults. Much of what she came to learn about Lyme came from her work with Dr. Brian Fallon at Columbia University. After her residency at Harvard Longwood Psychiatry Residency Program,  she moved to  New York-Presbyterian/Weill Cornell Medical Center and Presbyterian/Columbia University Irving  Medical Center and, eventually, rose to become the Director of Child and Adolescent Evaluation at the Lyme and Tick-Borne Disease Research Center at Columbia University.  Currently, Dr. Delaney has a private practice in New York City.Dr. Delaney's work falls into the relatively new and emerging field of immunopsychiatry in which psychiatric disorders are viewed through a lens that examines the role of infections and the immune system in the development of neuropsychiatric symptoms.  Learn what initial professional experiences led Dr. Delaney to become what might be described as a "medical detective." Episode 3 is divided into three parts: 1) Introduction and overview of tick-borne diseases; 2) diagnosis and treatment; and 3) a description of her soon-to-be-released study about the prevalence of Bartonella in patients diagnosed with Bartonella.Recorded May 13, 2024Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.Credits: Music by Kingsley Durant from his "Convertible" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn

In Part 2, the discussion with Dr. Shannon Delaney continues with a focus on the diagnosis and treatment of Lyme and other tick-borne diseases.Recorded May 13, 2024Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.Credits: Music by Kingsley Durant from his "Convertible" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn

In Part 3, the discussion with Dr. Shannon Delaney continues on her soon-to-be-released study in Frontiers in Psychiatry Journal about the prevalence of Bartonella in patients diagnosed with Bartonella.Recorded May 13, 2024Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.Credits: Music by Kingsley Durant from his "Convertible" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn

In episode two, Susan Manfull interviews Dr. Kyle Williams, Director of the Pediatric Neuropsychiatry and Immunology Program at Massachusetts General Hospital, and Andrew about the potential link between strep, psoriasis, psoriatic arthritis, and obsessive-compulsive disorder (OCD). Andrew shares his personal experience of how his psoriasis and OCD symptoms improved after being treated with the biologic medication Cosentyx, which targets IL-17, a cytokine involved in inflammation. Dr. Williams discusses his research to investigate the relationship between IL-17, psoriasis, and OCD, including retrospective and prospective studies. They also discuss the need for a more multidisciplinary approach in medicine to understand better and treat the connections between physical and mental health.If you have Psoriasis and OCD and would like to share your story with Dr. Kyle Williams, please send an email to [email protected] April 25, 2024Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.Credits: Music by Kingsley Durant from his "Convertible" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn

It seemed our conversation from Episode 2 was left dangling so we continued talking. If you would like to hear a wee bit more, listen to this bonus content which captures most of that conversation, mostly musings about navigating the medical system and whether the division between psychiatry and neurology is artificial (another dangling conversation to be continued in another episode).Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.Credits: Music by Kingsley Durant from his "Convertible" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn