A Preventable Health Emergency
My open letter to former Illinois Governor Bruce Rauner (below) was published in The Chicago Tribune on March 17, 2017. I’m proud to say that, later that summer, Governor Rauner signed our bill into law: (https://www.nbcchicago.com/news/local/charlies-law-illinois-pandas-pans-435222533.html). For information about PANDAS, PANS and immune-related encephalopathies, please visit ASPIRE.
An Open Letter To Illinois Governor Bruce Rauner in Support of House Bill 2721
Dear Governor Rauner,
If any one of your six children, after coming down with a seemingly harmless common childhood infection, developed debilitating psychiatric challenges that failed to resolve with antibiotics, therapy, psychotropic drugs, and intensive psychiatric treatment, would you throw your hands up and stop trying to find answers? Or, would you be willing to take on any battle, even with an industry much more powerful than yourself, to heal your sick child?
This serves as a reminder that your time – and your window of opportunity – is now, to lead and to govern for the greater good of our state by supporting House Bill 2721, which amends the insurance code to provide coverage for the full range of standard treatments for Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS/PANS). Families desperately need your support of HB2721, and for you to share its necessity with your colleagues.
We expect that when kids are exposed to an array of infections, they eventually recover. But, when kids with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection) or PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) are exposed to certain bacteria and infections, their immune systems go into overdrive. To be sure, bacterial invaders are attacked, but so is healthy tissue, including, among other places, tissue in the child’s brain. The attack produces neuroinflammation and results in a number of debilitating neurological and psychiatric symptoms known as PANDAS/PANS.
What This Condition Looks Like
Children with PANDAS/PANS…
…cannot get out of bed or maintain social connections
…cannot eat properly or stay in school consistently
…cannot avoid illness or manage intrusive thoughts and repetitive, compulsive behaviors
…cannot control rage or suppress anxiety/tics/obsessive compulsive behaviors
…cannot stop impulsive, often reckless behavior
…cannot be away from their parent, but may also be compelled to strike out at them during a rage
… cannot escape being labeled as “psychotic”, “conduct disordered” or even “crazy” as they are passed from one clinician to another before being hospitalized in a psychiatric unit
…cannot help but give up hope of ever being well again, losing not only their childhood and adolescence, but sometimes even their life to this disease.
The greatest tragedy of PANDAS/PANS isn’t the illness itself; it is the fact that treatments with proven benefits are being denied to these children by insurers and providers as “too expensive” or “experimental”. In some tragic cases, the insurance carriers even deny the existence of PANDAS/PANS, citing decades-old editorials claiming the disorders are “controversial.” However, in the past five years, tremendous progress has been made by scientists and clinical investigators in the world’s leading institutions. These studies not only show the benefits of early recognition, accurate diagnosis and treatment, but also elucidate the mechanism causing the disease – forever eradicating any doubts about the existence or nature of the neuroinflammation causing PANDAS/PANS.
Governor Rauner, just as legislation moves at a snail’s pace, so do changes in medical practices and acceptance of scientific breakthroughs. However, PANDAS/PANS is not a new disorder. Post-infectious neuropsychiatric syndromes were actually first described in the late 1800s, and significant discoveries were made at the NIMH in the 1990s, documenting the clinical presentation of PANDAS and the importance of antibiotics and immune-modulating therapies in recovery. Unfortunately, those discoveries have not been incorporated into standard practice in Illinois, and the children of this generation have been waiting their entire lives for treatment.
These critically ill children are unable to receive treatment due to:
1) The inaction of insurance providers
2) Medical evidence slow to reach clinicians, including the top scientific and clinical investigations from NIMH, Harvard, Columbia and Stanford, among many others
3) The stigma that mental illness has its roots (and solutions) in attitudes and choices, rather than neuroinflammation triggered by infections.
Governor Rauner, you have the power to save lives and break this heartbreaking cycle. You are poised to set a national example for bipartisan healthcare. You can encourage a paradigm shift by acknowledging that your constituents’ physical health impacts their mental health.
When treated early, kids who experience a sudden-onset of psychiatric symptoms following infection are able to recover and lead satisfying, productive lives. By way of example, with early recognition, expensive treatments like IVIG (intravenous immunoglobulin therapy, a treatment used and covered by insurance for numerous autoimmune disorders), WILL NOT need to be prescribed for every child with PANDAS/PANS.
A Practitioner’s Perspective
“The definition of ‘Medical Necessity’ is at the heart of this,” says Dr. Anette Mnabhi, D.O., A.O.B.N.M.M., A.O.B.F.P.
“The climate doctors practice in right now is not conducive to healing these children. Any rapid change is prevented by the current attitudes of modern medicine, putting the bottom line before the health of its neediest patients. These are our children we’re talking about. How is it they are not getting necessary treatment?”
Overwhelmed families ask themselves this question every day, and their responses typically include terms like foreclosure, multiple jobs, lack of sleep, bankruptcy, and divorce.
Untreated, these children will continue to draw upon our state’s special education, mental health, and continued health services throughout their lifetimes. They may never reach their full potential in the state's economy without appropriate treatment. Their caregivers also draw upon these systems to cope, and often bear the burden of not being able to work outside the home.
Now that more and more people are recognizing this condition, why is it so impossible…
…for children to receive adequate care?
…for doctors to get medically necessary treatment for their patients?
…for families to navigate the systems that are supposed to be there to help them in a health crisis?
A Public Health Emergency
“Strep infections are not being treated properly these days,” says Mnabhi.“In terms of prevention alone, this is a public health emergency. But the insurance companies are neither accepting thoroughly studied innovation nor updating policies willingly.”
Governor Rauner, please help families with this type of autoimmune encephalitis receive the medical care they need. Please empower doctors to recognize the signs and prescribe the treatment our children need, should they need it. Allow our doctors to provide the appropriate treatment plans based on a child’s need, in conjunction with the recognized standard of care. Please support HB2721 as it makes its way through the legislative process, and please sign it into law quickly .
We all need to do right by our kids.
Every last one of them.
Yours Truly,
Christine Wolf
Community Outreach Advocate
PANDAS/PANS Advocacy & Support
www.PAS.care
For more information, please see:
•Pandas/Pans Advocacy & Support (www.pas.care)
•Pandas Physicians’ Network (www.pandasppn.org)
•PandasNetwork (http://www.pandasnetwork.org/)
•Illinois Department of Public Health (http://www.dph.illinois.gov/search/site/pandas%20pans)
•Journal of Child and Adolescent Psychopharmacology paper, Clinical Evaluation of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference (www.ncbi.nlm.nih.gov/pmc/articles/PMC4340805/)
•Weintraub, Pamela. "Hidden Invaders." Discover Magazine. Web. 10 Mar. 2017 (http://discovermagazine.com/2017/april-2017/hidden-invaders)
•My Kid Is Not Crazy, A Documentary Film by Tim Sorel (www.mykidisnotcrazy.com)
