The National Association of Social Workers, New York Chapter advocates for nearly 62,000 licensed social workers across New York State, and for the clients they serve. It is the largest professional body to endorse this legislation.
What this letter argues
- Treatment for PANS and PANDAS is not currently covered by insurance despite clear medical necessity.
- Scarce medical education and research means many children are diagnosed only at late stages.
- In moderate to severe cases children cannot leave their homes, enter psychiatric hospitalization, self-harm, and experience drastic functional impairment.
- Families are deciding whether to mortgage their homes to pay for their child’s treatment.
- Severity-based treatment shortens flares and reduces downstream healthcare use, so coverage is also fiscally sound.
The letter in full
Submitted by Dr. Shakira Kennedy, PhD, LMSW, Executive Director, with Policy Coordinators Amanda Rodriguez, MS and Gideon Mosse. Published exactly as submitted.
The National Association of Social Workers is the professional organization for social workers across the country. The New York Chapter (NASW-NY) is responsible for advocating for the nearly 62,000 licensed social workers in the State as well as the clients they serve. NASW-NY strongly supports S10208 (Harckham)/A9659-A (Cashman) to require health insurance policies to cover costs for pediatric acute-onset neuropsychiatric syndrome rehabilitation treatment.
Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) are conditions that typically appear in youth and cause sudden and often severe symptoms of obsessive compulsive disorder (OCD) or restrictive eating. The noticeable changes in mood, behavior, and sensory and motor function in children are triggered by infections, immune system issues, or environmental factors.
There is a scarcity of medical education and research for PANS and PANDAS, leading to many children getting diagnosed at late stages in their condition. Without proper treatment, the condition leaves children unable to thrive in their developing years. In moderate to severe cases, children are unable to leave their homes, enter psychiatric hospitalization, self-harm, and experience drastic functional impairment. Early diagnosis and access to treatment are vital to avoid suffering and long-term developmental damage.
The treatment for PANS/PANDAS is not currently covered by insurance, despite its clear medical necessity. The condition is often mistaken for OCD disorder, thus providers are often giving improper treatment due to lack of resources. Ensuring access to a severity-based, multi-pronged treatment approach can shorten flares, reduce downstream healthcare utilization, and change the course of a child’s life. Treatment should be determined by the patient’s healthcare provider and may include antibiotics, anti-inflammatories, symptom management, and immunomodulatory therapies. Moderate and severe cases may require intravenous immunoglobulin (IVIG) or plasmapheresis.
Families are making the decision to mortgage their home or pay for their child’s treatment. The insurance law needs to reflect the changes that have been discovered through research and medical advances. PANS/PANDAS coverage is critical this session, to ensure children are able to access their right to health care and to live a life of liberty and happiness.
For all the above reasons, the NASW-New York Chapter enthusiastically supports S10208 (Harckham)/A9659-A (Cashman) to require health insurance policies to cover costs for pediatric acute-onset neuropsychiatric syndrome rehabilitation treatment. Medically necessary health care is a human right, and this bill will be one more step towards that goal.
The bills this letter supports
This letter supports S10208 and A9659-A, the current bill numbers. The current bills are A9659A, sponsored by Assemblymember Michael Cashman and now in the Assembly Insurance Committee, and S10208, sponsored by Senator Pete Harckham and now in the Senate Insurance Committee.
Send a letter to your own legislators or read more about the bills.