Thread by @C19LH_Advocacy

On 8/7, we discussed the Biden-Harris Administrations reports on #LongCOVID & offered a full circle look at where we are as a community & what is needed to move us forward to ensure each action in motion today, makes it over the finish line. 1/25 🧵

We discuss the need for you, your friends & family & other community allies to GET VOCAL & help get policymakers to understand the decades long impacts that #LongCOVID will have on their communities due to its systemic effects. #AllHandsOnDeck for #LongCovidAction
2/

If more people got involved in the efforts happening now, the sooner millions could see help! If we don't begin changing public policy now, we may miss our window of opportunity to do so in our lifetimes. We need action now! Not later, not in a few months, not next year, NOW!
3/

Cynthia Adinig (@CynthiaAdinig) starts us off discussing how legislation gets passed & highlights several #LongCOVID bills needing YOUR support right now; The TREAT Long COVID Act, The CARE for Long COVID Act, The Longhaulers Act, & the Pandemic Centers of Excellence Act.
4/

Cynthia also talks about her experience testifying at the recent hearing held by the Select Committee on the Coronavirus Crisis & why telling our stories can change perspectives & responses. She emphasizes the need to educate more policymakers about #LongCOVID.
5/

Netia McCray (@netiamccray) discusses the Federal Support Services for Americans w/ #LongCOVID.

1- Protection & Advocacy Systems [One of the most interesting takeaways from this, can be responsible for monitoring the conduct of facilities, & names Post COVID Centers.]
6/

2- Healthcare Coverage & Access [Provide affordable health insurance to those battling Long COVID, expansion of telehealth].

3- Community Services & Supports.

4- Income & Financial Assistance [Nothing new or expanded].

5- Job Assistance [Retain, retrain].

7/

6- Housing [Assistance for homeowners & renters, utilities assistance, affordable housing programs].

7- Food & Nutrition Support.

8- Childcare & Early Childhood Development & Education.

9- Education Supports.

10-Caregiver & Family Support.

8/

Amy Watson (@Amy_Ant) discusses the National Research Action Plan.

A statement that stood out to most was “symptoms persist weeks to months after the initial phase of infection has passed.”

Many with #LongCOVID have been suffering for years. This messaging must change.
9/

The reports acknowledged the reporting out of @C19LH_Advocacy showing 44% reported being out of work completely & 51% reported having to reduce working hours. The report also states #LongCOVID is NOT just one condition but “represents many potentially overlapping entities.”
10/

We are happy to see Dysautonomia (~67%) & ME/CFS (~46%) highlighted as associated conditions, however, there are many others we need to encompass that are occurring at high rates w/ in the community. We can’t understand #LongCOVID if we do not look at the full picture. #LCAC
11/

The reports discuss several hypotheses for #LongCOVID; viral persistence, reactivation of other latent viruses, dysregulated immunological & inflammatory responses, & central or peripheral neurological damage, including autonomic dysfunction, & inflammation of blood vessels.
12/

Amy cont’s, discussing concerns with the overuse of hospitalized patients in #LongCOVID research & expresses disappointment in the limited screening for associated conditions as part of RECOVER. She urges people to dig deep &.KEEP REMINDING THE WORLD THAT WE ARE HERE!
13/

@K_Bishof discusses the Inspire study & concerns w/ limited symptom criteria leading to potentially biased data, including on the % of #Longhaulers & time impacted. She also discusses RECOVER, its purpose & how the data collected will be studied.
14/

She emphasizes that patient reps continue to fight for the community and inclusion of what's important to us & we are continuing to urge RECOVER to enroll more #Longhaulers vs acute #COVID cases & include more testing for associated conditions.
15/

One of the major takeaways from these reports was the announcing of an “Office of Long COVID Research & Practice.” Karyn discusses what this office would do & emphasizes the need to thoroughly understand how large of an effort this would be. However…
16/

There is no staffing or funding for this office, which is where community engagement comes into play. YOU must help get your members of congress engaged. This must be a consistent community wide effort for the collective good of those with #LongCOVID & associated conditions.
17/

Discussion:

Cynthia, how could the community engage more lawmakers to act on #LongCOVID?

Utilize social media, contact them through their websites, be persistent & clearly ask for what you want. Social media is a great way to call on those hiding from #LongCOVID convo’s.
18/

Netia, many of the resources in the reports are unobtainable/ unhelpful to most. How do we work together to expand these supports?

These resources are not new to many & programs need to implement community feedback specifically given to address our experiences & needs.
19/

Amy, what does it mean to have #LCAC finally recognized as part of #LongCOVID for not only #Longhaulers but the AC communities as well?

#Validation has to be the starting point. The development of these conditions has been clear. Our collective voices will benefit millions.
20/

Karyn, what do we have to do to make sure this office is formed & sustained?

We are going to need legislation to support the funding for the “Office of Long COVID Research & Practice.”

If we do not have the community's support when it comes to reaching out to lawmakers…
21/

… staying consistent and highlighting the impacts to us, our families, & our communities, we are not going to see the support needed for the running & sustainability of this office.

The bottom line is the community & its allies must get & stay relentlessly vocal.
22/

We implore those with #LongCOVID, their caretakers & allies to get vocal & stay involved. We are working diligently to enroll advocacy teams & encourage you to sign up for your advocacy teams here bit.ly/C19LAPVOL to help organize & facilitate community wide efforts.
23/

W/ out community engagement, consistent pressure on & education for policymakers, w/ out our voices continually being elevated— this legislation, this office, these resources so very much needed, will never make it over the finish line. #AllHandsOnDeck for #LongCovidAction
24

We hope this was helpful & provided a comprehensive look into where we are & what we have in front of us. There is much more work to be done but #Together we can push forward #LongCOVIDAction.

Not tomorrow.
Not next week.
Not next year.
NOW!
25/25