Tennessee PANS PANDAS Updates

tennessee pans pandas aspire w

 

 

Kristi Giacco is leading the efforts in Tennessee. We will help provide updates and Call to Action items regularly. If you would like to join in the efforts, please contact Kristi directly.

Update

The two insurance bills will not move forward during this session, but tremendous progress has been made! We look forward to continuing help support efforts in Tennessee. Please stay tuned for information about the status of the Awareness Day Bill. Please make sure to stay in touch and follow this page for updates regarding continued efforts to pass insurance mandates.


In the News
  • ‘He’s falling apart’ – Family enters final fight for son’s ‘life-saving’ treatment: See Story
  • PANDAS Family granted insurance coverage after 4th attempt: See Story
  • My brain is making me do this’: Family fights for insurance coverage of brain disease caused by strep: See Story
    • Below are brief updates to this story

1st Update:

2nd Update:


General Legislative Information

pans pandas legislative action legislation insurance mandate aspire


Call to Action!

We have several Call to Action items. It is crucial that you start on them today. Please read the step-by-step instructions below.

We need you to contact YOUR district’s legislators AND members of the committees in both the House and the Senate that our three bills are in front of currently. Please note that each bill has TWO bill numbers, one for the Senate SB (SB2401, SB2402, SB2400) and one for the House (HB2484, HB2463, HB2524). They are considered separately by the House and the Senate, which is why we need to contact both. If your district legislators, House or Senate, sit on any of these committees, it is critical that you make an appointment to meet them, but we encourage everyone to meet with their district legislators no matter what. Legislators value constituents over seeing lobbyists and other organizations, which means you will be a top priority. Please make sure you follow the steps below; the timeline is important as it is designed to make the most significant impact on the legislators. Email addresses for all committees, as well as a link to look up your district legislators, can be found below.

  1. Feb 15/16 – Email an About PANS/PANDAS Intro to your district legislators AND the Committee Members with the following information. See below for an example of the About PANS/PANDAS Intro email. The email should include:
    1. Ask your legislator for a meeting (in-person, video, phone)next week or the week after at the latest. If your district legislator is on any of these committees, please point that out.
    2. Ask them to support PANS/PANDAS Insurance Bills SB2401/HB2484, SB2402/HB2463, and PANS/PANDA Awareness Day HB2524/SB2400.
    3. Write about what PANS/PANDAS is
    4. See below for Legislator email addresses
  2. Feb 15/16 –– Set Up a Meeting with Your Legislators for next week (in-person, video, phone)

    1. Call your legislators’ offices in both the Senate and the House to set up a meeting (in-person, video, phone) to talk about why you are asking them to support these bills. Legislators value constituents over seeing lobbyists and other organizations, which means you will be a top priority.  You do not need any legislative experience. Trust us on this. Remember, you know your story better than anyone else, so there is no one more qualified than YOU.
    2. Please set the meetings for the week of February 19th or February 26th at the latest.
    3. See below for the link to find your legislator’s phone numbers
  3. Now – Write Your Personal Impact Statements so you can send Monday/Tuesday

    1. These emails are where you tell YOUR STORY about how PANS/PANDAS has impacted your child’s and your family’s life. Again, ask for a meeting with your district legislators early in the week or the following week.
    2. Monday/Tuesday – Email these Personal Impact Statements to your district legislators and Committee members of both the House and Senate
    3. See below for Talking/Writing Points
    4. See below for an example of a Personal Impact Statement
    5. See below for Legislator email addresses
  4. Now – Enlist Help from Anyone and Everyone! –  See below for examples of Short Form Support Emails

    1. Today or Friday, ask everyone you know in Tennessee if they will send their district legislators and committee members a short note requesting support for the 3 Bills. Include Friends, Family, Teachers, Doctors, Therapists, etc.
    2. Early next week, have them email the short emails
    3. See below for Legislator email addresses

Insurance Bills:

 

SB2401/HB2484: AN ACT to amend Tennessee Code Annotated, Title 8; Title 56 and Title 71, relative to pediatric medical disorders. 

Insurance, Health, Accident – As introduced, mandates private insurance coverage for treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) and pediatric acute onset neuropsychiatric syndrome (PANS). – Amends TCA Title 8; Title 56 and Title 71.

SB2401/HB2484 Bill Status: See Link

Committee Emails: Click Here

 

SB2402/HB2463: AN ACT to amend Tennessee Code Annotated, Title 8; Title 56 and Title 71, relative to pediatric medical disorders.

TennCare – As introduced, requires TennCare coverage of treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) and pediatric acute onset neuropsychiatric syndrome (PANS). – Amends TCA Title 8; Title 56 and Title 71.

SB2402/HB2463 Bill Status: See Link

Committee Emails: Click Here

 

Awareness Day Bill:

 

SB2400/HB2524: AN ACT to amend Tennessee Code Annotated, Title 15, relative to PANDAS Awareness Day.

Holidays and Days of Special Observance – As introduced, establishes October 9 of each year as “PANDAS Awareness Day” to promote awareness of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections and Pediatric Acute-onset Neuropsychiatric Syndrome. – Amends TCA Title 15. 

SB2400/HB2524

Bill Status: See Link

Committee Emails: Click Here


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 example letters for About PANS/PANDAS and 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

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 SB2401/HB2484, SB2402/HB2463, and SB2400/HB2524 so that every family impacted by PANDAS or PANS can have hope for a better future.
  • Support SB2401/HB2484, SB2402/HB2463, and SB2400/HB2524 to aid Tennessee’s children, like my child, who battle 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 SB2401/HB2484, SB2402/HB2463, and SB2400/HB2524 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 SB2401/HB2484, SB2402/HB2463, and SB2400/HB2524 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 SB2401/HB2484, SB2402/HB2463, and SB2400/HB2524. 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.

About PANS/PANDAS Email

(You can share ASPIRE’s About PANS PANDAS short video or attach handouts in your email. Legislative Action: Information for Legislators toolkit or What is PANS/PANDAS flyer)

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

As your constituent, I would like to arrange a time next week to discuss PANS/PANDAS with you, as my child and entire family have been deeply impacted by this devastating but treatable disorder.

Please support PANS/PANDAS Insurance Bills SB2401/HB2484, SB2402/HB2463, and PANS/PANDA Awareness Day SB2400/HB2524.

PANS/PANDAS are misdirected immune responses that trigger brain inflammation, which ultimately causes newly abrupt onset or worsening obsessive-compulsive symptoms, restricted intake of food or fluids (sometimes to life-threatening severity), anxiety, depression, and suicidality, emotional lability, personality changes, sensory hypersensitivity, cognitive deficits and physical symptoms, such as arthralgias, urinary dysfunction, and severe insomnia. Common infections like strep throat, COVID-19, mycoplasma pneumonia (walking pneumonia), flu, etc, typically trigger PANS/PANDAS.

Symptoms can range from mild to severe. In mild cases, children might function well enough to continue to attend school. In severe cases, symptoms can become life-threatening due to extreme food restriction and/or suicidality. Many children with PANS/PANDAS are diagnosed with a psychiatric illness and prescribed psychotropic medications rather than being evaluated and treated for an underlying infection.

Early and comprehensive PANS/PANDAS treatment is crucial for optimal patient outcomes. Medical intervention within the first year of initial onset often leads to recovery, while a failure to receive timely and appropriate treatment may necessitate more intensive protocols.

Treating PANS PANDAS involves a three-pronged approach that utilizes psychiatric medications when appropriate to provide symptomatic relief, antimicrobial treatments to eliminate the source of neuroinflammation, and anti-inflammatory and immune-modulating therapies to treat disturbances of the immune system. The immunomodulatory treatment is based on disease trajectory and symptom severity.  Guidelines for treating postinfectious autoimmunity and/or neuroinflammation in PANS are predicated on decades of treating other neuroinflammatory disorders and postinfectious autoimmune conditions.

Unfortunately, the lack of insurance coverage results in delays or the prevention of critical treatments, exacerbating symptoms and causing devastating, needless suffering and long-term neurologic, cognitive, and psychiatric dysfunction. It is economically prudent to identify and address this illness rather than burden patients and their social, educational, and familial systems with lifelong care. We must act now to support these families and minimize the financial, emotional, and physical impact of this disease by ensuring insurance coverage for PANS/PANDAS.

Your support is critical; our family can’t wait any longer for appropriate medical treatment. Please help.

Sincerely,

[FIRST NAME, LAST NAME]

[ADDRESS]


Impact Statement Letter Examples

(Please use your personal information to tell your story. The letter below is ONLY an example. 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 SB2400/HB2524 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]


House & Senate Emails

Below are the emails for the various committees for each bill. You simply have to copy and paste them into your email.

Please also include YOUR district legislators in both the House and the Senate. You can use ASPIRE’s Look Up Your Legislator! tool. Also, you can click on the “Find My Legislator” tab, located at the top right-hand corner of the Tennesse Capitol website.

 

HOUSE Insurance Bills

(HB2463-TennCare & HB2484-Private Insurance)

HB2463: AN ACT to amend Tennessee Code Annotated, Title 8; Title 56 and Title 71, relative to pediatric medical disorders.

HB2484: AN ACT to amend Tennessee Code Annotated, Title 8; Title 56 and Title 71, relative to pediatric medical disorders. 

Dear Chairlady Esther Helton and members of the House Insurance Subcommittee,

rep.esther.helton@capitol.tn.gov; rep.scott.cepicky@capitol.tn.gov; rep.caleb.hemmer@capitol.tn.gov; rep.gary.hicks@capitol.tn.gov; rep.timothy.hill@capitol.tn.gov rep.sabi.kumar@capitol.tn.gov; rep.justin.lafferty@capitol.tn.gov; rep.brock.martin@capitol.tn.gov; rep.bo.mitchell@capitol.tn.gov; rep.tim.rudd@capitol.tn.gov; rep.iris.rudder@capitol.tn.gov; rep.bryan.terry@capitol.tn.gov

 

SENATE Insurance Bills

(SB2401-Private Insurance & SB2402-TennCare)

SB2401 N ACT to amend Tennessee Code Annotated, Title 8; Title 56 and Title 71, relative to pediatric medical disorders.

SB2402 – AN ACT to amend Tennessee Code Annotated, Title 8; Title 56 and Title 71, relative to pediatric medical disorders.

Dear Chair Senator Paul Bailey and members of  Senate Commerce and Labor Committee,

sen.paul.bailey@capitol.tn.gov; sen.raumesh.akbari@capitol.tn.gov; sen.jack.johnson@capitol.tn.gov; sen.shane.reeves@capitol.tn.gov; sen.steve.southerland@capitol.tn.gov; sen.bo.watson@capitol.tn.gov; sen.ken.yager@capitol.tn.gov; sen.frank.niceley@capitol.tn.gov; sen.art.swann@capitol.tn.gov;

 

SENATE Awareness Day Bill

 

Senate Health and Welfare: SB2400(PANS/PANDAS Awareness Day)  Chair – Sen. Rusty Crowe, Vice Chair – Sen. Ferrell Haile, 2nd Vice Chair – Sen. Shane Reeves

sen.shane.reeves@capitol.tn.gov; sen.joey.hensley@capitol.tn.gov; sen.ed.jackson@capitol.tn.gov; sen.ferrell.haile@capitol.tn.gov; sen.becky.massey@capitol.tn.gov; sen.art.swann@capitol.tn.gov; sen.bo.watson@capitol.tn.gov; sen.jeff.yarbro@capitol.tn.gov

HOUSE Awareness Day Bill

 

House Health Subcommittee: HB2524 (PANS/PANDAS Awareness Day) Chair – Rep. David Hawk

rep.david.hawk@capitol.tn.gov; rep.tim.hicks@capitol.tn.gov; rep.darren.jernigan@capitol.tn.gov rep.tom.leatherwood@capitol.tn.gov; rep.brock.martin@capitol.tn.gov rep.bo.mitchell@capitol.tn.gov; rep.paul.sherrell@capitol.tn.gov; rep.bryan.terry@capitol.tn.gov rep.ryan.williams@capitol.tn.gov

2 comments to Tennessee PANS PANDAS Updates

  1. Patricia Beas
    February 15, 2024

    I live in Tennessee and I want to support this bill what I need to do ?

    Thanks
    Patricia Beas

    Reply
    • Gabriella True
      February 15, 2024

      Hi Patricia, So glad you want to get involved. First thing to do is do all the Call to Action tasks that are outlined in this post. Within the Call to Action list, there are links to examples and the email addresses of the legislators. So everything you need to get started is all on this page.

      CALL To ACTION tasks

      Reply

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