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Help with PANS legislation today!

Many states are actively involved in creating change for PANS patients by advocating for insurance coverage, awareness day, and public health committees.  ASPIRE can connect you with those actively involved in your state. If there is no legislative action in your state, we can help you get started! Please see below: State Advocacy: How to Assist with PANS/PANDAS Legislation for lots of fantastic information on getting started. Email the Legislative and Public Policy Committee Chair today for more information on advocacy efforts in your state!

Proclamation Requests & Proclamation Language

State Advocacy

How to Assist with PANS/PANDAS Legislation

If PANS/PANDAS legislation has already been proposed in your state, then there is a parent leader connected with it. Please coordinate your efforts with the parent lead who is already working closely with the sponsor of the bill. Please contact ASPIRE to help put you in contact with the parent leader in your area.

If legislation does not yet exist or has not yet been proposed in your state, please contact ASPIRE to join our community of state advocacy leaders and learn what people are doing in other states. You will need to find a sponsor for your bill by presenting one of your representatives with information on PANS/PANDAS and why a bill is necessary for insurance and/or advisory committee.

Every state runs its legislative process and approaches specific issues differently. There is no one-size-fits-all guide. This information is a general guideline on how to assist with PANS/PANDAS legislation.

First and foremost, get to know your state legislative representatives  

If you don’t already know who your legislators are, go to your state’s legislative website check out Open States or go to your state’s legislative website and look up your district. 

  • Find out where their office is near you.
  • Find out when they have open town hall and/or community meetings
  • Subscribe to their newsletters; plan to attend.
  • Like them on Facebook.
  • Find out their staffers and/or interns names.
  • Introduce yourself if the timing works.

Familiarize yourself with your state’s current PANS/PANDAS bill

If your state does not have an existing PANS/PANDAS bill in proposal stages, contact us at ASPIRE for support on how to start the process.

  • Memorize the bill’s number.
  • Read the bill thoroughly.
  • Find it on your state legislature’s website and sign up to get email updates and track its progress.
  • Look up which representatives are on the committee in charge of the bill and see if any of your representatives sit on the committee. Don’t worry if they do not, but it is important to know.

After you have done the above two tasks, tell your legislators about the bill!

  • Develop your elevator pitch, which is the who, what, how, and why of the bill. Keep it short and simplistic.
  • Contact them. Meet with them in person. If you can’t meet with your representative, then meet with their intern or staffer. Go to their office, the Capitol or a town hall meeting.
  • If you can’t meet with them, then call them. Again, try to speak directly with your representative but you can talk with a staffer or intern.
  • Follow up any meeting or phone call with an email. Or email as a last resort.
  • Remember, in-person meetings are best; phone calls are second best; and emails, although useful, can be ignored if you haven’t already done the work of setting up a positive relationship.

What do you say?

Example scripts are provided below and see our General Do’s and Don’ts for additional tips.

For an Insurance Bill

  1. I want to let you know about a bill you’ll be seeing that means a lot to me. (Bill Number). It is imperative because children with PANS/PANDAS need access to affordable care in order for them to reach recovery so their illness doesn’t become a chronic condition, which will impact their lives as well as create a financial burden on the state. (Also say the full PANS/PANDAS name as they will be written out in the bill.)
  2. My child has PANS/PANDAS and it has negatively affected him/her. (Then give a brief description.)
  3. Thank you for supporting this bill.

For an Advisory Council Bill

  1. Please support (Bill Number) which creates an advisory council on PANS/PANDAS. It will help inform key stakeholders across the state about PANS/PANDAS. There is a need for education on PANS/PANDAS for health care providers, school staff, school health services, behavioral health services, and the general public. Education will significantly improve the lives of children with PANS/PANDAS.
  2. Thank you for supporting this bill.

When the bill is presented for a vote in a committee hearing

Committee hearings may happen multiple times in this process.

The parent lead will inform you about hearings and which committee members to contact, ie House Health Committee, Senate Health Committee, House Appropriations Committee, Senate Appropriations Committee. They will also inform you of the proper channels to go through to submit testimony and/or give testimony in person.

  • Write your testimony and submit it through the proper channels.
  • Send a copy of your written testimony to your representative.
  • If possible, give testimony during a committee-hearing meeting. Advise your representative that you will be doing so and would like them to attend the hearing.
  • Make sure you address your testimony correctly.

Example
Dear Senator (name), Representative (name) and honorable members of the (Name of) Committee, My name is (your name); I am (a few words about yourself and how you relate to this bill) in support of (Bill number).  (Then write concisely about why you are in support of the bill including how it will affect your child and how the bill will have a positive impact on the state.) We thank you for the time and effort you put into working towards a brighter future for children in (your state) with PANS/PANDAS. Then sign it with your full name and residential address.

After the hearing, call or email a brief “thank you” to all committee members.

Example
Thank you for supporting (Bill Number). With your help, we can provide insurance and access to care for children suffering from PANS/PANDAS, and save the state money by identifying and assisting children with PANS/PANDAS as early as possible.

Just prior to when the bill is presented for a vote to the House or Senate

  • Call your representative or their staffer or intern asking for support. Be very brief.
  • Remind them how they know you, ie we met talked a couple of weeks ago (mention where: on the phone or in person).
  • Email other representatives asking for support. Be very brief.

Example
I am asking you to vote YES on (Bill Number). This bill is important to me because my child has PANS/PANDAS and he needs insurance coverage to recover, be an active member of society and not be a burden on the state. 

OR

This bill is important to me because my child has PANS/PANDAS and professionals need more education on how to treat and support these kids so they can get better.

Attach your written testimony either as an attachment or as a link to the public record.

After a Vote

After the vote, call your representative or their staffer or intern to thank them for supporting the bill or to find out why they voted against the bill.

Example
Thank you for supporting (Bill Number). With your help, we can provide insurance and access to care for children suffering from PANS/PANDAS, and save the state money by identifying, and assisting children with PANS/PANDAS as early as possible.

OR

I was surprised to see you voted against (Bill Number). This bill would provide insurance and access to care for children suffering from PANS/PANDAS, and save the state money by identifying, and assisting children with PANS/PANDAS as early as possible. Please advise me on what I can do to gain your support on this issue.

General DOs and DON’Ts

DO share your story. Tell the representatives about your child including his/her successes and struggles.

DO express your gratitude to the representatives working hard on your behalf as their constituent.

DO make sure you are polite.

DO talk about the struggle to attain and afford appropriate treatment.

DO follow up after every contact with your understanding of what was discussed.

DO focus on how the lack of information about PANS/PANDAS impacted your child. For instance, if your doctor or school had understood PANS/PANDAS, your child would have been diagnosed, treated and supported in a timely manner.

DO volunteer to find answers for your representatives if they stump you with questions.

DO NOT complain about the specific services your child did or did not receive.

DO NOT get too medically technical.

DO NOT threaten or get angry.