California PANS PANDAS Updates

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California Legislative Action

Please follow this page and ASPIRE’s social media for updates – Facebook and Instagram. Please contact CALPANS with questions regarding California legislative efforts and ways you can get involved today.


Call To Action

 

  1. Write a Letter of Support for AB 2105. This is a Personal Impact Statement – Tell YOUR STORY about how PANS/PANDAS has impacted your child’s and your family’s life.
    1. Please follow the Talking/Writing Tips below
  2. Address it: Dear California Legislators & Governor Gavin Newsom,
  3. Due Date: Tuesday, March 5th
  4. Email Letters to: panscalifornia@gmail.com
  5. Who Can Write?: ANYONE. You do not need to live in California.

General Legislative Information

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AB2105

 

AB2105: An act to add Section 1367.38 to the Health and Safety Code, and to add Section 10123.38 to the Insurance Code, relating to health care coverage

 

Track Bill Status: Link

Hearing: TBD

Sponsor: Assemblymember Josh Lowenthal (D)

Summary: AB 2105, as introduced, Lowenthal. Coverage for PANDAS and PANS. Existing law, the Knox-Keene Health Care Service Plan Act of 1975, provides for the licensure and regulation of health care service plans by the Department of Managed Health Care, and makes a willful violation of the act a crime. Existing law provides for the regulation of health insurers by the Department of Insurance. Existing law sets forth specified coverage requirements for health care service plan contracts and health insurance policies, and limits the copayment, coinsurance, deductible, and other cost sharing that may be imposed for specified health care services. This bill would require a health care service plan contract or health insurance policy issued, amended, or renewed on or after January 1, 2025, to provide coverage for the prophylaxis, diagnosis, and treatment of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) that is prescribed or ordered by the treating physician and surgeon. The bill would prohibit coverage for PANDAS and PANS from being subject to a copayment, coinsurance, deductible, or other cost sharing that is greater than that applied to other benefits. The bill would prohibit a plan or insurer from denying or delaying coverage for PANDAS or PANS therapies because the enrollee or insured previously received treatment for PANDAS or PANS or was diagnosed with or received treatment for the condition under a different diagnostic name. Because a willful violation of these provisions by a health care service plan would be a crime, the bill would impose a state-mandated local program. The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement. This bill would provide that no reimbursement is required by this act for a specified reason.

Notes: According to the California Health Benefits Review Program (CHBRP), ONCE ENACTED, Assembly Bill 2105 (AB 2105) will cost less than ONE CENT! https://www.chbrp.org/


ASPIRE Letters of Support

 


Talking/Writing Point Tips

 

Written & Oral Testimony: Please follow the general guidelines for talking with your legislator and providing written or oral testimony. Please see an example letter of a Personal Impact Statement.

  • Address your letter correctly: i.e., Dear Senator Last Name or Dear members of the [Name of] Committee
  • Include your full name and address
  • Double-check that you have the correct bill and name
    Please share relevant details that pertain to the bill, but do not overshare personal information.

Tell Your Story: Describe how delayed treatment or the inability to treat has affected the patient’s daily life, including symptoms and functioning. Include information on how lack of insurance ultimately affects the patient and the entire family. Stay focused. Be concise. Only discuss matters relevant to this bill. 

  • Key Topics: Throughout the discussion of the Key Points below, include how these topics impact you and your family’s well-being.
    • Overall Impact Statement – Provide an overall impact statement on the patient’s and family’s emotional, physical, and financial health. Assume this may be all the legislators read. This should be a short paragraph summarizing how the lack of insurance for PANS/PANDAS has impacted the patient’s and the family’s life. This can be used as a stand-alone statement or as an introductory paragraph to a longer testimony letter.
    • Impact of Not Accessing Appropriate Treatment (Medical, Financial, Societal, Emotional)
      • Impact of misdiagnosis
      • Impact of not accessing PANS/PANDAS literate providers
        • Due to a lack of education/awareness
        • Due to a lack of insurance-based providers
      • Impact of Delaying or Denial of Appropriate Treatment
    • Financial Impact: Explain how these issues have affected your financial well-being.
      • Out-of-pocket medical expenses: detail how much
      • Employment issues: unemployment, reduction of hours, or unpaid time off, EFMLA/FMLA
        • Did you lose your job, reduce hours, or take unpaid leave regularly?
        • Detail amount of lost wages
        • Detail duration of employment issues
        • If you took EFMLA/FMLA, specify the duration and toll on your career.
      • Were you unable to provide appropriate medical treatments due to the lack of insurance?
      • Did you have to sell or refinance your home or other assets?
      • Family Impact: Include how financial issues impacted you and your family’s well-being
    • School Impact: Discuss the impact on your child’s performance at school, the need for accommodations like a 504 plan or IEP, homebound instruction, and absenteeism.
      • Impact on school performance.
      • Did your child require any of the following school services: 504, IEP, Homebound/Home Hospital, special needs outplacement, tutoring, etc
      • Attendance Issues:
        • Roughly how many days of school has your child missed yearly?
        • Homebound/Home Hospital – If yes, what was the duration
        • Homeschool – If you chose to homeschool, please include information on why, for how long, and the impact on the family
      • Were appropriate supports denied due to a lack of awareness by school staff?
      • Out-of-pocket expenses: Detail amount spent on advocates, lawyers, tutoring, testing, etc
      • Family Impact: Include how issues at school impacted you and your family’s well-being
    • Lack of Insurance Coverage Impact:
      • Did the patient have to forgo having necessary appropriate treatment due to the lack of insurance coverage?
        • What was the impact on their health?
        • How has this changed the trajectory of their illness and future?
        • What was the impact on the family?
      • Quantify the number of denials
      • Described cited reasons for denials
    • For Providers:
      • Discuss how lack of insurance coverage affected your ability to practice medicine
  • Do Not Discuss:
    • Other medical issues not relevant to this bill (for example, standards of care for comorbid health issues, vaccines, etc.)
    • Personal issues that do not pertain to this bill

Impact Statement Letter Examples

(Please use your personal information to tell your story. The letter below is ONLY an example, and adding facts and figures from your personal story is encouraged. DO NOT use this story. See the Talking Points for more tips about how to craft this letter.)

Dear Senator or Representative [Fill in Name] OR Members of the [Fill in Committee Name],

I wrote to you last week with a short introduction to what PANS/PANDAS is. Today, I am writing to explain how this illness has taken a devastating toll on my child and my family. I will call your office today to arrange a time to discuss PANS/PANDAS with you. We need your help. Please support PANS/PANDAS Insurance Bills SB2401/HB2484, SB2402/HB2463, and PANS/PANDA Awareness Day SB2524/HB2400 so my child can access appropriate medical care.

My child happily went to school, was in scouts, and was captain of his lacrosse team. Then after repeated strep infections and other infections, life as we knew it was taken away and replaced with crippling fears due to OCD, cognitive decline that affected his ability to learn, tics, severe rage, and many other symptoms. He went from an A student to unable to complete coursework and attend school. He no longer went to scouts, dashing his dreams of becoming an Eagle Scout, which he was a year or two from achieving. His fatigue, tics, and anxiety prevented him from playing lacrosse again. His life was gone. The depression and rage reached levels that required hospitalization at times or round-the-clock suicide watch for weeks on end at home. 

He was able to access appropriate amounts of antibiotics and steroids as we worked with a provider out of state. We had to pay out of pocket for this provider. We have spent over $25,000.00 in the past three years. However, in order for his symptoms to remit, he desperately needed IVIG. Intravenous immunoglobulin (IVIG) is a medication made up of antibodies collected from healthy donors that are used to basically flood the dysregulated immune system with healthy antibodies to allow the brain to function. But due to our inability to afford IVIG out of pocket, which would have cost roughly $13,000 for one single dose of which he would most likely have needed several, we had to face the excruciatingly painful reality that our darling son, who had previously excelled at life was not going to get life-altering treatment. So, he suffered needlessly for years and years. It is a callous system that disregards the lives of children and their families by denying them access to correct treatment covered by insurance. 

I had to leave my job to provide full-time, round-the-clock care for my son. Leaving my job further impacted our ability to afford medical care. The school district had to provide special education, tutoring, and, ultimately, a non-mainstream special school. I can barely speak of the emotional toll on every family member. The worry is immeasurable and has necessitated therapy for everyone. My son lost years of education. His goal of going to college was ripped from him. Since he lost the ability to attend his regular high school and finish scouts and lacrosse, he was so isolated that he lost many friends. This increased the devastating toll of not being able to access treatment. He, well, actually all of us, live in fear of the next flare and what will happen if we are not able to get treatment. Imagine having most of your childhood ripped from you and then living in fear for what comes next. Please help my family and many with similar experiences. Help us today. Please pass these insurance bills so children like my son can live healthy, happy, and constructive lives. Please pass the awareness day bill because, with more awareness of this devastating disorder, we can save children from being misdiagnosed and, therefore, incorrectly treated, and this illness will continue to torment them.

Sincerely,

[FIRST NAME, LAST NAME]

[ADDRESS]


Short Form Support Emails

Short requests for support are also incredibly important to ensure we have adequate numbers of people emailing their legislators. These can be as simple as any of the examples below. Please ask everyone you know to send versions of these suggestions to their legislators.

  • Please support Bill Number so that every family impacted by PANDAS or PANS can have hope for a better future.
  • Support Bill Number to aid STATES‘s children, like my child, who battles PANS/PANDAS. Treatment costs have reached tens of thousands of dollars, forcing us to [Provide an example that applies to your situation: tap into our home equity, quit my job to provide full-time care to my child, who is too sick to attend school, etc.]. Let’s prioritize our children’s well-being.
  • Please vote YES on Bill Number to alleviate the immense suffering faced by families dealing with PANS/PANDAS. The financial hardships for the families and the state are unsustainable without insurance coverage.
  • Please support Bill Number. PANS/PANDAS is a devastating but treatable disorder. Please help my [child, grandchild, student, friend’s child, etc.] who access appropriate insurance-based medical treatment so [he, she, they] can stop suffering needlessly.
  • Please vote yes to pass Bill Number. I have witnessed firsthand in my PANS/PANDAS students the difference that treatment makes. Access to treatment will help enable children to reach their full potential. Students without treatment, more often than not, require long-term, expensive special education services. Students who receive appropriate treatment stay in mainstream education; some only require a 504 plan, while some cease to need services.

 


Past Bills
AB907

Introduced By: Assembly Member Lowenthal

Bill Status: Assembly Bill 907

Bill Information: AB 907 – Coverage for PANDAS and PANS.

An act to add Section 1367.38 to the Health and Safety Code, and to add Section 10123.38 to the Insurance Code, relating to health care coverage.

For more information, see: CALPANS Legislative Updates

ASPIRE Board and Professional Advisory Board Testimony Letters:

 

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