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News Release

Monkeypox Crisis: Activists Tell White House to Take Urgent Steps for Equity

August 11, 2022
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After activists sent an open letter to the White House national monkeypox response coordinator Robert Fenton and deputy coordinator Demetre Daskalakis earlier this week, a meeting between the letter’s co-authors and the two officials was scheduled for Thursday. The activists outlined 11 policy solutions the Biden administration should implement on behalf of health equity in its response to the monkeypox virus. 

Interviews available:

TOM CARPINO; tcarpin2@jhmi.edu 
    Carpino is a doctoral student in Infectious Disease Epidemiology at the Johns Hopkins Bloomberg School of Public Health. 

Among other things, the open letter demanded:

  • free testing, vaccination and condoms at community venues;
  • partnerships with private insurance companies and CMS;
  • an increase in resources to diagnose cases and deliver vaccines;
  • regulation of work and travel protections;
  • mental health support and direct financial assistance for quarantined people;
  • support for rapid research for home tests; and 
  • investment in global resource response.

For a full list of demands, see here. 

Carpino spoke to the Institute for Public Accuracy on behalf of RESPND-MI, an LGBTQ+ community-led survey to map symptoms and exposure to monkeypox and inform the distribution of limited vaccines. The group, composed of activists and academics, formed quickly in the months since monkeypox began spreading in the U.S. 

Carpino said that the group has been focused on advocacy as it tries to “figure out how we can best amplify our voices both as academics and as members of the LBTQ+ communities that are being impacted by this pandemic.” Although frustrated that officials delayed declaring a public health emergency, Carpino is hopeful about the new response team led by Fenton and Daskalakis. “This letter is already being read by folks within the White House and CDC,” said Carpino, “so we know it’s having some impact. Within a few days of its publishing, the White House set up a meeting between our co-authors, Demetre [Daskalakis], and Robert [Fenton]” set to take place today, Thursday, August 11. 

Zhiting (Jack) Feng, a co-author of the open letter and a research data manager for the MACS/WIHS Combined Cohort Study group at Johns Hopkins Bloomberg School of Public Health, added: “I got involved with RESPND-MI through the weekly Community Forum, which is open to scholars and activists. RESPND-MI formed a system to collect information on monkeypox infections and networks that includes transparent data broken down by identity groups. Our aim is to recommend policies that will reallocate resources to the communities at greatest risk of this virus. Among those most affected, do they have access to accurate health information and essential health services to empower and protect themselves? 

     “Our work will inform the White House with necessary and effective actions to combat this crisis and center inclusion, equity and fairness in its response. I’m proud that we have demanded that the White House must include members of at-risk communities into the conversation––not just a seat at the table, but a place to lead the conversation from the head of the table.” 

Carpino emphasized that a solid plan or strategy cannot be implemented without community engagement that understands what the needs actually are: “RESPND-MI was founded in a desire to fill in the gaps where they currently exist, because public health agencies weren’t getting sufficient data for the needs of our communities.”

RESPND-MI’s principal investigators are Keletso Makofane (FXB Health and Human Rights Fellow at Harvard University; kmakofane@hsph.harvard.edu) and James Krellenstein (cofounder of PrEP4All; james@prep4all.org).

The group has also put out informative documents on ways to have safer sex during this time, as well as guidance for people who have contracted the virus.