ILLINOIS TO BECOME 1st STATE REQUIRING INSURERS COVER TREATMENT FOR CHILDHOOD POST-INFECTIOUS DISORDERS PANDAS/PANS
CHICAGO, ILLINOIS – JULY 7, 2017
Families with sick children are eagerly awaiting Governor Bruce Rauner to sign House Bill 2721 into law, making Illinois the first state in the nation requiring insurers to provide coverage for the treatment of a newly recognized set of childhood post-infectious disorders resulting from brain inflammation.
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and its broader counterpart, PANS (Pediatric Autoimmune Neuropsychiatric Syndrome) are uncommon immunological reactions to infection, leading to neurological and psychiatric symptoms in children. In most cases, the disorders can be medically treated, especially when caught early in the course of the disease.
HB2721 – to be known as Charlie’s Law after the sons of two mothers who inspired the bill -- is an initiative led by Democratic State Senator Tom Cullerton (Villa Park) and Democratic State Representative Deb Conroy (46th), in conjunction with the national nonprofit group Pandas/Pans Advocacy & Support (PAS).
HB2721 was passed by both the Illinois Senate and House with overwhelming bipartisan support in June, 2017. The Illinois State Medical Society was also a proponent of the bill, which requires insurers to cover the medically advised protocol for children with PANDAS or PANS. Without insurance coverage, families are often forced to choose whether to pay for household utilities, food or a child’s medical treatment.
IVIG (intravenous immunoglobulin) infusion therapy is one of several treatment options for PANDAS/PANS, but in some cases, antibiotics and steroids alone may be sufficient treatment.
To date, insurers have historically denied IVIG, stating it is experimental -- primarily because it is expensive. However, IVIG is considered disease modifying; many of these children show recovery with as little as one infusion. Once the autoimmune process is “reset” with IVIG, children often go on to lead healthy, productive lives. Unfortunately, the longer a child lives with the untreated condition, the higher the price for families – and society – to manage it.
A child with unresolved PANDAS/PANS eventually requires access to special services throughout his/her lifetime: special education, mental health/social services, and continuous medical care – costing taxpayers more money than the recommended treatment protocol which insurers currently deny.
The approved bill has been sent to the governor’s desk. It now awaits his signature.
Children are waiting for care. What is our governor waiting for?
- Hidden Invaders, Discover Magazine April 2017
- PANDAS: The Short Story
- PANDAS/PANS Documentary: My Kid is Not Crazy (link to purchase or 48 hour rental)
- ABC News/John Garcia Story
- Senator Tom Cullerton fights to ensure insurance companies cover costs for children’s healthcare
Advocacy & Support
www.pandasppn.org -- Pandas Physicians’ Network
www.nepans.org -- New England Pans Pandas Association
www.pandasnetwork.org -- PandasNetwork
PANDAS/PANS Advocacy and Support (www.pas.care) is a non profit organization focused on increasing awareness and acceptance of Pediatric Autoimmune Neuropsychiatric Disorders and providing much needed support to families struggling with the medical, educational, social-emotional, and financial hardships of these disorders. Donations in any amount may be made to PANDAS/PANS ADVOCACY & SUPPORT: http://www.pas.care/donate.html
HB2721: Frequently Asked Questions
Is there a Standard of Care for PANDAS/PANS?
Yes, based on peer-reviewed and published clinical evidence, there are three prongs of treatment modalities that are regularly employed by physicians when treating cases of PANDAS/PANS: treating the SOURCE of infection; resolving the SYMPTOMS; and modulating the immune SYSTEM response to infections. These modalities are expounded upon by the PANDAS Physicians Network, a physician specialty society; as well as by the PANS/PANDAS Clinical Research Consortium (comprised of experts from 15 leading U.S. academic institutions). Additionally, Public Act 99-0320, created an IL PANDAS/PANS Advisory Council in 2015, whose objectives, in part, were to make recommendations concerning standard practice guidelines. Very clear standard diagnostic and treatment guidelines were adopted by the Illinois PANDAS/PANS Advisory Council and are provided in their 2016 report to the General Assembly.
Is IVIG FDA approved?
The FDA approves drugs for specific indications that are included in the drug’s labeling. There are only eleven conditions that are included within the labeling for IVIG, although IVIG is used for hundreds of illnesses. When a drug is used for an indication other than those specifically included in the labeling, it is referred to as an off-label use. There are a vast number of off-label uses for this blood product that encompass the fields of Hematology, Neurology, Obstetrics, Pulmonology, Rheumatology, as well as “conditions in which acquiring an infectious disease could be deleterious,” for example, PANDAS/PANS.
Do children with PANDAS/PANS meet insurers’ criteria for off-label use of IVIG?
Yes, children with PANDAS/PANS meet criteria for the accepted off label uses of IVIG as reported in insurers’ medical policies. For example, Blue Cross Blue Shield policy states, “Many off-label uses are effective, well documented in the literature and widely used.”
“Off-Label use of FDA approved drugs as prescribed by a physician to treat chronic, disabling, or life-threatening illnesses may be covered when meeting the criteria outlined below:
• Has been approved by the FDA for at least one indication (YES)
•Is in one of the standard reference compendia for the off-label indication, (NO)
• Is supported by clinical research that appears in peer-reviewed literature specific for the indication in question.” (YES)
Is IVIG considered experimental?
IVIG is not considered an experimental drug overall. It is a blood product that is used for a wide variety of immune deficiencies and autoimmune illnesses. PANDAS/PANS has scientifically proven mechanisms of both of these types of illnesses and has recently been designated a subgroup of Autoimmune Encephalitis (for which IVIG is considered frontline treatment.) As with many other medical conditions, research continues to be done on the use of IVIG for PANDAS/PANS, however there have been two NIMH controlled trials, numerous peer reviewed and published treatment guidelines from around the world that include its use specifically for PANDAS/PANS, and a number of published case reports demonstrating its benefits. Peer-reviewed studies are included in this packet. The PANS/PANDAS Clinical Research Collaborative Consortium (comprised of experts from 15 leading U.S. academic institutions) will recommend the use of IVIG for "moderately-severely ill children with PANDAS" in their treatment guidelines. Moreover, the PANDAS Physicians Network has included IVIG in their treatment recommendations for several years.
Does the American Academy of Pediatrics (AAP) recognize PANDAS/PANS?
The AAP recently published information on PANDAS/PANS in their AAP News: The Official News Magazine of the American Academy of Pediatrics. It is recognized. A link for pediatricians to access the PANDAS Physicians Network Diagnostic and Treatment Guidelines is provided in the issue of AAP News. In addition, Illinois-based non profit support group, PANDAS/PANS Advocacy and Support, was welcomed as exhibitioners at the March 2017 Illinois Chapter of American Academy of Pediatrics Annual Conference and will exhibit again at the National AAP Conference in Chicago in September. Many pediatricians in this state are signing on in support of HB2721.
Will every child who is diagnosed with PANDAS/PANS require IVIG treatment?
No. Children who receive proper medical attention quickly may be helped by the less invasive measures of treatment found in the accepted standard of care, such as antibiotics, cognitive behavioral therapy, and the occasional use of steroids.
Are children within the State of Illinois receiving IVIG for PANDAS/PANS now?
Yes, but the authorization process and coverage by the insurers is inconsistent. We hope that HB2721 will provide consistency for those who have met the published diagnostic criteria, and whose doctors have decided the treatment to be medically necessary.
Why isn’t IVIG for PANDAS/PANS already a covered treatment?
“In applying experimental and investigational exclusions in a plan to either proposed health care services or as part of a post-service appeal, plans shall consider credible scientific evidence published in peer-reviewed medical literature generally recognized by the relevant medical community, Physician Specialty Society recommendations, the views of Physicians practicing in relevant clinical areas, the individual clinical circumstances…of the insured…, the views of the treating Physician and any other relevant factors.” If children with PANDAS/PANS who require IVIG treatment can and do meet that criteria consistently, shouldn’t this policy, brought about by legal precedent nationally, be applied consistently by the insurers?
Our families are waiting for covered care.
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Tags: autoimmune encephalitis, coverage, Deb Conroy, denial, insurance, intravenous immunoglobulin, IVIG, legilative support, legislative support, Mike Connolley, PANDAS, Pandas Pans Advocacy & Support, PANS, recovery, strep, strep throat, Tom Cullerton