Call-to-action for California: Centers of Excellence

We have a golden opportunity to secure substantial funds to address the clinical care crisis in ME/CFS and Long COVID, but your help is needed NOW. #MEAction and the Patient-Led Research Collaborative have put together a proposal that calls for the State of California to appropriate $120 million for Centers of Excellence in Long COVID along with ME/CFS. Assembly Member Bill Quirk has agreed to be chief sponsor and has submitted a budget request for this amount.

To get across the finish line, we need you to email your California State Senator and Assembly Member NOW. There is no time to waste, as major decisions will be made in mid-May.

Here is what you need to do:

  1. Identify your Senator and Assembly Member. To do this, you can go to https://findyourrep.legislature.ca.gov/ and type in your address, with zip code.
     
  2. Once you find your Senator or Assembly Member, you can click on the link to go to their website. From there you should see a menu option for Contact. You can either use the contact form on their site OR you can see if they list individual emails for staff members. If you are able to find emails for staff members, you will want to contact District Director and/or the Legislative Director. Email them using this template (if you have a person’s name, you can edit to include that).

    Dear Legislator,

    I am requesting your support for the budget request of Assembly Member Bill Quirk that the State of California allocate $120 million toward the establishment of a Long COVID Centers of Excellence program, to be managed by the University of California. This is a critically important step in addressing the clinical care crisis faced by the estimated 2.7 million Californians with Long COVID plus those with associated post-infectious conditions such as myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS).

    Long COVID is now a recognized national crisis, with President Biden having announced on April 5 a “Whole-of-Government Effort to Prevent, Detect and Treat Long COVID”. Centers of Excellence will perform clinical care, carry out needed research, and engage in education, training, and outreach. Having a coordinated, statewide approach is critical to the success of this effort. UC, with its experience at managing grand scale projects and housing Centers of Excellence, is very well suited to play this leadership role in developing the needed statewide infrastructure. Moreover, having Long COVID Centers of Excellence in place will put California in an advantageous position when competing for federal Long COVID funds.

    Here is a copy of Assembly Member Quirk’s budget request memorandum:https://www.meaction.net/wp-content/uploads/2022/04/Budget-Request_Long-COVID-ASM-Quirk.pdf

    Here is the underlying proposal, put forth by the (Long COVID) Patient-Led Research Collaborative and the Myalgic Encephalomyelitis Action Network:
    https://www.meaction.net/wp-content/uploads/2022/04/Long-Covid-Centers-of-Excellence-Proposal.pdf

    I am also including a sample letter that can be used to express your support to the Senate and Assembly budget committee and subcommittee chairs. You can use this link to download the letter: https://www.meaction.net/wp-content/uploads/2022/04/To_budget_chairs_042622.docx

    Thank you for your consideration.

  3. Once you have emailed them, please let me know if you get a response from your contact.
    .

If your condition and energy level permit, you can follow up as follows:

  • A week following your email, send a follow-up email to the same parties, referencing your first email, asking if the legislator will support, and/or
  • At any time following your email, call your district office and ask to speak with the District Director regarding your request.

If you have any issues or need help, please feel free to email me at [email protected]. Happy to help! 

Thank you for your support.
Art Mirin
#MEAction California State Chapter Leader

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