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Long Covid

Long COVID & Vaccine Impact Listening Session: July 30 at 11 am PT/ 2 pm ET/ 6 pm UTC

Next Friday, the LCA is hosting a listening session about Long COVID & Vaccine Impact. It is intended to gather information, data, and patient experiences about Long COVID and COVID-19 Vaccines. Please join us for this 90-minute discussion to share your perspectives and questions! This is a confidential discussion and will not be recorded.  It is open only to Long COVID Alliance members and we want to extend a special invitation to members who are:

  • People with Long COVID who have received the COVID-19 vaccine
  • People with other chronic illnesses who have received the COVID-19 vaccine
  • Medical providers who have treated Long COVID and/or immunocompromised patients
  • Researchers who have data about vaccinations, or who are planning research in this area

Learn more and register here: https://us02web.zoom.us/meeting/register/tZwtc-CorjMrH9CKWnyOytWfmko3_ePOCEb_

Long Covid Lobby Day in Washington, DC:  Marked by Covid has announced the first National COVID Victim’s Families and Survivors Lobby Days, which will take place July 26-28, 2021. With more than 605,000+ people in the United States dead and millions more facing an uncertain health future due to surviving COVID-19, it is time for our Federal government to take action. Rami’s Heart Covid-19 Memorial is taking the lead on the Monday candlelight vigil, which will include displayed photos of loved ones lost, 608 lights — one for every 1,000 lives lost — a piece of the Rose River felt rose memorial, and panels from the Covid Memorial Quilt.
RSVP for COVID Lobby Days here: https://actionnetwork.org/groups/marked-by-covid
RSVP for the vigil here:

Attend in-person
Watch the event online

COVID March to Remember: August 7-8

Led by COVID Survivors for Change, the COVID March to Remember will consist of Awareness & Action Marches and Gatherings across the United States on August 7th and 8th – where we will collectively take at least 615,000 steps to honor every life taken by COVID, raise awareness, call for public safety behaviors, and demand more action and support for COVID Survivors. Find an event near you or create an event.

They are raising awareness and promote advocacy for the following:

  1. COVID-19 Survivors Should be Prioritized in the American Rescue Plan and all COVID relief resources.
  2. Support to Children Who Had a Loved One Die from COVID or who have Long Covid.
  3. Memorialize Those Who Died and Ensure This Never Happens Again.

If you organization is interested in partnering and signing on as a supporting organization, learn more here or fill out this form.

21st Century Cures 2.0 Listening Session: July 29 at 7:30 am PT/ 10:30 am ET/ 2:30 pm UTC

On Thursday, July 29 at 10:30AM ET, Friends of Cancer Research is hosting a virtual meeting will feature a dialogue about the recent 21st Century Cures 2.0 discussion draft, featuring bill co-sponsors Reps. Diana DeGette (D-CO) and Fred Upton (R-MI). While this meeting will be focused on oncology, we see this an opportunity to ask the Representatives questions about Cures 2.0 as a whole, ARPA-H, and the Long COVID section of the Act:

Sec. 101. Further Understanding the Implications of Long COVID:

  • Sources of Coverage Survey: directs the Secretary of Health and Human Services (HHS) to conduct a large national survey of patients who self-identify as having long-COVID to assess sources of health coverage, long-term care coverage, and disability coverage.
  • Learning Collaborative: directs the Secretary of HHS to convene a series of national meetings (virtually) to serve as the basis of an ongoing long-COVID learning collaborative with individuals and organizations representing key sectors of the health care community. This should include health plans, providers (including hospitals, physicians, nurses, etc.), medical and scientific researchers, patient and consumer advocates, data scientists, service providers, and developers of diagnostics and therapeutics).

You can register here. If you plan on attending, let us know! Karyn has information that she can share with you about the possible connection between cancer and COVID-19.

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