Colorful abstract painting by Steve Johnson on Unsplash

Current Activities

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  • Centering Long COVID, disability justice and care for chronic conditions into COVID-19 advocacy and policy efforts across public health and social justice efforts.
  • Providing strategic support to and across COVID, Long COVID and ME/CFS support and advocacy groups.
  • Seeking resources for Black, Brown, Latinx and indigenous leaders living with Long COVID and complex chronic conditions to sustain and expand their work.
  • Facilitating strategic discussions between HIV advocates and leaders living with Long COVID and ME/CFS.
  • Furthering Long COVID research advocacy, including on the NIH’s RECOVER Initiative on Long COVID, calling for meaningful engagement with patients, integration of post-viral researchers, and a comprehensive patient engagement modeled on HIV clinical trial networks.

Pledge

The HIV Community to Face COVID-19 and Long COVID in 2022

Pandemics are chronic. After two years of the Covid-19 pandemic, our world is significantly more disabled and chronically-ill. As we saw with HIV/AIDS, disease outbreaks expose the need for large-scale change in healthcare, public health, and other unjust structures.  Yet even as the pandemic continues to claim lives, we are pressured to return to a ‘business as normal’ that has never centered the needs of disabled and chronically ill people. In the third year of the pandemic, we must end practices and policies that ignore, and further marginalize, disabled and chronically-ill people. The National Network for Long Covid Justice ask you to join us in a pledge, “Pandemics Are Chronic: A Statement of Commitment to Long Covid Justice.” We are experiencing a mass disabling event, and disabled people and those with Long Covid must be at the forefront of addressing this unprecedented moment.

Las pandemias son crónicas. Después de dos años de la pandemia de Covid-19, nuestro mundo está significativamente más discapacitado y crónicamente enfermo. Como vimos con el VIH/SIDA, los brotes de enfermedades exponen la necesidad de un cambio a gran escala en la salud, la salud pública y otras estructuras injustas. Sin embargo, a pesar de que la pandemia sigue cobrándose vidas, nos presionan para que volvamos a un “negocios como de costumbre” que nunca ha centrado las necesidades de las personas con discapacidad y enfermedades crónicas. La Red Nacional Pro-Justicia por Covid Prolongado les pide que se unan a nosotros en una promesa, “Las Pandemias son Crónicas: Una Declaración de Compromiso con la Justicia Covid Prolongado.” Estamos experimentando un evento masivo de discapacidad, y las personas con discapacidad y aquellos con Covid Prolongado deben estar a la vanguardia de abordar este momento sin precedentes.

Press

May 23, 2022 | TheBody

“Queer and Disabled People Desire Connection, Intimacy, and Sex in the Ongoing COVID-19 Pandemic”

Featuring our co-founder JD Davids

May 19, 2022 | MarketWatch

“‘This isn’t just gonna go away’: Long COVID is crashing the retirement hopes of many Americans”

Featuring our co-founder JD Davids

May 10, 2022 | The Atlantic

“Could Paxlovid Treat Long COVID?”

Featuring our co-founder JD Davids and strategy circle member Angela Vázquez of Body Politic

May 10, 2022 | Brown University School of Public Health

“About Long COVID: Queer, Trans, and Sick with Long COVID”

Featuring our co-founder Gabriel San Emeterio.

May 9, 2022 | GRID

“The US has had the most covid cases in the world. Why isn’t it doing more to study long covid?

Featuring our co-founder JD Davids and strategy circle members Netia McCray and Karyn Bishof of the Covid-19 Longhauler Advocacy Project and Lisa McCorkell of the Patient-Led Research Collaborative.

April 13, 2022 | The Atlantic

“The Pandemic has Trapped Millions in Unending Grief”

Featuring our strategy circle member Kristin Urquiza of Marked by COVID.

April 6, 2022 | STAT

“Biden administration ramps up long Covid research efforts following criticism”

Featuring our co-founder, JD Davids.

March 29, 2022 | STAT

“‘A slow-moving glacier’: NIH’s sluggish and often opaque efforts to study long Covid draw patient, expert ire”

Featuring our co-founder, JD Davids.

March 16, 2022 | Washington Post Outlook

“Long COVID could change the way researchers study chronic illness”

Featuring our co-founder JD Davids, and Long COVID Justice strategy circle members Karyn Bishof of the Covid-19 Longhauler Advocacy Project, Alison Sbrana of Body Politic, and the Patient-Led Research Collaborative.

March 16, 2022 | KPFA radio segment

Two years of COVID lockdown; ICE detention visitation; and a focus on SFPD”

Featuring our co-founder, JD Davids, in conversation with Dr. Rupa Marya.

Feb 13, 2022 | Press Release

Inspired by Successes of HIV Research, Patients with Long COVID, Affirm Importance of Deep, Meaningful Involvement in NIH’s $1.15 Billion RECOVER Initiative

In keeping with the accountable and ongoing involvement of people living with HIV in decades of successful research, leaders of patient-led groups for Long COVID press for greater integration into leadership and overdue answers on questions about the initiative’s protocols and structures…

Events

Resourcing the HIV Community to Face COVID-19 and Long COVID in 2022
February 22, 2022, 6:30-8p ET

  1. Provide affirming, supportive online spaces for discussion of HIV community concerns, needs and priorities in the third year of the COVID-19 pandemic;
  2. Increase recognition of the myriad impacts of COVID-19 on chronic conditions and disability, including HIV and Long COVID;
  3. Develop and distribute a report featuring a baseline assessment of community concerns, needs and priorities; and
  4. Establish linkages between HIV institutions and leaders with emerging networks of people living with Long COVID and associated complex chronic conditions to share best practices and encourage collaboration for mutual benefit.