Improve Access To Resources & Education For People Living With Long COVID

Senators Tim Kaine (D-VA), Ed Markey (D-MA) and Tammy Duckworth (D-IL) led the introduction of the Comprehensive Access to Resources and Education (CARE) for Long COVID Act, legislation to help people living with long-term COVID-19 symptoms - improving research as well as providing better resources for people with Long COVID.

TAKE ACTION to help move this bill forward:

1. CALL your Senators to SUPPORT this bill. Find your Senator HERE.

2. DOWNLOAD, POST, and SHARE these graphics (Square) (Horizontal) on your Social networks. TAG your Senators and ask for their SUPPORT. #CAREforLongCOVID

The U.S. government released the National COVID-19 Preparedness Plan today –
laying out the roadmap to help us fight COVID-19 in the future as we begin to get back to our more normal routines. The President’s Plan focuses on 4 key goals:

• Protect Against and Treat Covid-19

• Prepare for New Variants

• Prevent Economic and Educational Shutdowns

• Continue to Vaccinate the World

• Download National COVID-19 Preparedness Plan HERE

New York State Department of Health webinar, featuring experts from across the country discussing Long COVID and its impact on New Yorkers:

Replay: *From Program text box, click on Panel 3: Policy, Functional Outcomes -
Diana Berrent at 40:33)

8:45 am - Commissioner Mary Bassett
9:00 am - Research (Starts 13:20)
11:00 am - Clinical Considerations
1:00 pm - Policy & Functional Outcomes

COVID Patient Recovery Alliance’s Interim Report Outlines 24+ Recommendations for Federal Policymakers To Help Promote Recovery and Restoration

CPRA Coalition Recommends Comprehensive Federal Policies to Meet the Needs of Individuals with Long-COVID; Help Promote Recovery and Restoration

The CPRA Alliance’s Interim Report (Sept 2021) offers more than 24 federal policy recommendations and actionable steps that Congress and the Administration can take to empower the health care sector to provide comprehensive, high-quality care and ongoing support to individuals suffering from Long-COVID. The recommendations are organized into two verticals: models of care and payment systems, focusing on:

• Supporting the important role of primary care and other providers;

• Optimizing care for the underserved,

• Promoting ongoing research and education,

• Supporting analysis of health care coverage sources,

• Paying for high-value care delivery, and

• Leveraging tools and authorities of the Centers for Medicare & Medicaid Services.

• Download CPRA Interim Report HERE

U.S. Sens. Bob Menendez (D-N.J.) and Susan Collins (R-Maine) enlisted the help of Survivor Corps and other community advocacy groups to build momentum for their bill (S. 412) to create an independent commission to investigate the U.S. response to the pandemic, and make recommendations for preparing for future ones.

The Senators published a joint June 14, 2021 New York Times Op-Ed calling on Congress to support the creation of an independent, 9/11 style commission to assess the U.S. pandemic response and ensure the country is better prepared to confront future public health and economic crises. 

The senators have introduced the National Coronavirus Commission Act, the only bipartisan, bicameral legislation of its kind.

Survivor Corps is also calling on Congress to create a National COVID Registry.

In February 2021, the National Institutes of Health (NIH) announced the RECOVER initiative to bring together researchers and scientists to identify the causes and means to prevent and treat post-acute sequelae of SARS-CoV-2 (PASC), including what is commonly called Long COVID or long-haul COVID.

This Listening Session will help the RECOVER initiative to hear from and better understand affected communities’ experiences, needs and priorities, and will set the stage for hosting listening sessions in the future.

Live Link HERE

Dr. Amy Patterson Dr. Walter Koroshetz Dr. Lenora Johnson Dr. Andrea Lerner Alissa Gallagher

Prepared Remarks: Diana Berrent

Understanding the Immune Response to COVID-19

An in-depth discussion about the role of the adaptive immune response in combating COVID-19 and ongoing efforts to address the many consequences resulting from the virus. Replay Link - WATCH Here

Co-hosts:
Adaptive Biotechnologies and Personalized Medicine Coalition in cooperation with the Congressional Personalized Medicine Caucus: Sen. Tim Scott (R-SC), Sen. Kyrsten Sinema (D-AZ), Rep. Eric Swalwell (D-CA) & Rep. Tom Emmer (R-MN).

Panelists:
• Lance Baldo, MD, Adaptive Biotechnologies
• Diana Berrent, JD, Survivor Corps
• Akiko Iwasaki, PhD, Yale School of Medicine
• James Kublin, MD, Fred Hutchinson Cancer Research Center
• Norman Sharpless, MD, National Cancer Institute

Moderator: 
Cynthia Bens, Personalized Medicine Coalition

Opening Remarks: Diana Berrent

Briefing Details: Register/immune_response_CPMC

‘The Long Haul’: Forging a Path through the Lingering Effects of COVID-19

1st ever Congressional Hearing focused on Long COVID, examining the trends and research into Long COVID, the chronic syndrome occurring in patients infected by COVID-19:

Committee Testimony Repository: All Participants

Submitted Testimony:
Survivor Corps: E&C Hearing Testimony on Long Covid
Survivor Corps: E&C Hearing Research Brief
Survivor Corps: Mission Overview (April 2021)

The American Academy of Physical Medicine and Rehabilitation (AAPM&R) has called on President Joe Biden and Congress to gear up for the next coronavirus crisis, by preparing and implementing a comprehensive national plan focused on the needs of millions of individuals suffering from the long-term symptoms of COVID-19.

"We must act now to form and implement a national crisis management plan that will help Americans impacted by PASC not only survive COVID-19 but regain their quality of life and return to being active members of their communities"
- Stuart M. Weinstein, MD, FAAPMR, AAPM&R President