COVID-19 ADVOCACY CENTER

Engagement Toolkit:

Advocacy Map:

The map below contains information about current opportunities for COVID-19 patients, survivors, and others to get involved and advocate for change. Click on your state of residence to explore opportunities to get involved. Refer to the Engagement Toolkit above for advocacy tips.

If you are interested in receiving updates about new opportunities when they are posted, be sure to subscribe to our mailing list. If you need additional information about any of these opportunities, if you would like us to feature a specific advocacy opportunity, or if you need any guidance about engaging with policymakers or your elected officials, you can contact us at info@pandemicpatients.org.

State-Specific Opportunities

California

Assembly Bill 2098

Objective: Enact policies to reduce the spread of misinformation and disinformation about COVID-19.

Next Hearing Date: California Senate Appropriations Committee, Appropriations Suspense Hearing, August 11, 2022.

Get Involved: California residents and national organizations can submit a position letter to members of the committee. Refer to our position letter, below, for sample language.

Pandemic Patients Submits Testimony in Support of CA AB 2098

On June 20, 2022, Pandemic Patients submitted testimony to the California Senate Standing Committee on Business, Professions, and Economic Development in support of California Assembly Bill 2098 (AB 2098). If enacted, AB 2098 would include the dissemination of misinformation or disinformation about COVID-19 in the definition of unprofessional conduct. This would include inaccurate information about “the nature and risks of COVID-19, its prevention and treatment, and the development, safety, and efficacy of COVID-19 vaccines.” By including this type of behavior in the definition of unprofessional conduct, California will authorize the Medical Board of California and the Osteopathic Medical Board of California to discipline physicians and surgeons who spread disinformation or misinformation about COVID-19 to their patients.

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Multi-State Opportunities

U.S. Senate Committee on Health, Education, Labor & Pensions (HELP)

Objective: Request that the Senate HELP Committee convene a hearing on long COVID to raise awareness about the long-term consequences of COVID-19 infection.

Deadline: N/A.

Get Involved: Contact your Senator to request that the Senate HELP Committee convene a hearing on long COVID.

The following Senators are members of the HELP Committee:

Sen. Baldwin (WI), Sen. Braun (IN), Sen. Burr (Ranking Member, NC), Sen. Casey (PA), Sen. Cassidy (LA), Sen. Collins (ME), Sen. Hassan (NH), Sen. Hickenlooper (CO), Sen. Kaine (VA), Sen. Lujan (NM), Sen. Marshall (KS), Sen. Moran (KS), Sen. Murkowski (AK), Sen. Murphy (CT), Sen. Murray (Chair, WA), Sen. Paul (KY), Sen. Romney (UT), Sen. Rosen (NV), Sen. Scott (SC), Sen. Sanders (VT), Sen. Smith (MN), and Sen. Tuberville (TN).

  • Use the link above to locate the contact information for your Senators.
  • Call your Senator’s office and ask to speak to a staffer that handles health care issues.
  • If the health care staffer is unavailable, you can leave a message for them or call back again at a later date. Alternatively, you can ask for their email address and contact them through email.
  • Refer to the Conversation Guide below for tips on engaging with your Senator’s health staffer.
  • If your Senator’s office gives you specific feedback about why they are not willing to request this hearing, contact us and we can provide further guidance.

Conversation Guide: This conversation should take between 2-5 minutes, depending on how much information you’re able to share about how you have been personally affected by this issue.

  1. Begin the conversation by communicating the city and state that you reside in to confirm that you are a constituent of this Senator.
  2. If possible, share how you have personally been affected by COVID-19 and/or long COVID. If you are a long COVID patient, share information about the symptoms you are experiencing and any challenges you are having accessing treatment or support. Information about the financial burden of long COVID and information about how your employment or earning capacity have been affected is also relevant. If possible, convey a sense of urgency about your situation.
  3. Request that the Senate HELP Committee convene a hearing where medical experts, long COVID patients, and patient advocates can provide testimony about the challenges that long COVID patients face following their recovery from acute illness.
  4. Emphasize that this hearing is necessary to raise awareness about long COVID among members of the public.
  5. Emphasize that this hearing will help Congress develop a comprehensive strategy for addressing this issue.
  6. Thank the staffer for their time and conclude the conversation.
  7. You can continue to engage with your Senator’s office on this topic in the future. There is nothing wrong with calling your Senator’s office again on another day to repeat your request.

National Opportunities

U.S. Senate

S. 3726, CARE for Long COVID Act

Objective: Secure additional support for the CARE for Long COVID Act.

Deadline: Dec. 31, 2022.

Get Involved: Contact your Senator to request that they cosponsor the CARE for Long COVID Act. Refer to our position letter, below, for more information about this legislation and why it is important.

  • Use the link above to locate the contact information for your Senators.
  • Call your Senator’s office and ask to speak to a staffer that handles health care issues.
  • If the health care staffer is unavailable, you can leave a message for them or call back again at a later date. Alternatively, you can ask for their email address and contact them through email.
  • Refer to the Conversation Guide below for tips on engaging with your Senator’s health staffer.

Conversation Guide: This conversation should take between 2-5 minutes, depending on how much information you’re able to share about how you have been personally affected by this issue.

  1. Begin the conversation by communicating the city and state that you reside in to confirm that you are a constituent of this Senator.
  2. If possible, share how you have personally been affected by COVID-19 and/or long COVID. If you are a long COVID patient, share information about the symptoms you are experiencing and any challenges you are having accessing treatment or support. Information about the financial burden of long COVID and information about how your employment or earning capacity have been affected is also relevant. If possible, convey a sense of urgency about your situation.
  3. Request that the your Senator cosponsor the CARE for Long COVID Act to support constituents in his state, like you, who have been affected by long COVID.
  4. Thank the staffer for their time and conclude the conversation.
  5. You can continue to engage with your Senator’s office on this topic in the future. There is nothing wrong with calling your Senator’s office again on another day to repeat your request.

U.S. Department of Labor (DOL) and U.S. Centers for Disease Control & Prevention (CDC)

Online Dialogue: Understanding and Addressing the Workplace Challenges Related to Long COVID

Objective: Help inform the DOL and CDC’s efforts to support workers with long COVID. 

Deadline: August 15, 2022.

Get Involved: Individuals, employers, national organizations, community groups, and others are invited to participate by sharing challenges they have experienced related to long COVID, employment, and workplace benefits. Click here to learn more.

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