General Legislative Information
- How to talk to your state representative
- Find your State Representative and State Senator in your district
- ASPIRE Legislative Action: Information for Legislators Toolkit
- Talking/Writing Point Tips
- Short Form Support Email Examples
- About PANS/PANDAS Example Email
- Impact Statement Example
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 the following two example letters: 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, especially if it is irrelevant to the bill and PANS/PANDAS.
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 topics below, include how these points 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 lives. It 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 the lack of insurance coverage has 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
- 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: How did attendance issues impact you financially? Did you reduce work hours, take FMLA, leave work, etc?
- Lack of Insurance Coverage Impact:
- Did the patient have to forgo or delay getting the 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
- Did the patient have to forgo or delay getting the necessary, appropriate treatment due to the lack of insurance coverage?
- For Providers Only:
- 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
In most states, thousands of proposed bills come before legislators each year. Thus, we need to grab legislators’ attention so they will know they need to support this bill. An important way to do this is to have as many people, “your supporters,” as we can contact their legislators. Please ask everyone you know, including friends, neighbors, family, teachers, colleagues, etc, to write a short email to their legislators asking them to support the bill. These emails do not need to be long, and the sender does not need to be an expert or have any experience in PANS or contacting their legislators. These emails can be as simple as any of the examples below.
We advise you to provide “your supporters” with: 1—The Script/Email exactly as you want them to send it, so fill in the bill number and any other necessary information; 2—How to address the letter with the legislator’s title and name; 3—The legislator’s email or the URL of their contact page or the URL to submit testimony for the bill if there is one.
Examples:
- 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 Name of State’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 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, which 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.
About PANS/PANDAS Email
It can be helpful to provide basic information about PANS/PANDAS to legislators, as most will not have heard about it. In addition to the letter below, you can share a link to ASPIRE’s About PANS/PANDAS short video or attach handouts in your email such as the Legislative Action: Information for Legislators toolkit or What is PANS/PANDAS flyer.
Example:
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 Bill Number.
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.
Example:
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 PANS/PANDAS. Today, I am writing to explain how this illness has devastated 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 Bill Number 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 others who have 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]
Gabriella True
