A toolkit for new advocates: What I learned from the Long COVID Moonshot campaign

While the multi-billion dollar bill is currently stalled, advocates learned many important lessons that the community must carry into future efforts.

A collage of press clippings and images related to the Long Covid Moonshot bill and advocacy around it, including including images of Bernie Sanders, Ziyad Al-Aly, and advocates in blue “Moonshot” shirts and masks after a senate hearing — Heather Hogan/ The Sick Times

On any given day, in any given year, there are more problems to be solved than there are people to solve them. A Long COVID advocate’s job is to find people who can be convinced that this disease is one of the things that they should care about, and make it cost as little as possible for them to help you, in terms of money, time, and social capital.

I had a brief go of advocacy two years ago with Long COVID Moonshot. Run by about half a dozen people with Long COVID working together from their sickbeds around the country, the campaign aimed to rally the community around an ambitious call from Lisa McCorkell (then of the Patient-Led Research Collaborative) and researcher Michael Peluso. In late 2023, they published an influential article calling for a Long COVID research moonshot of 1 billion dollars per year for 10 years.

We recognized immediately the significance of this piece. It introduced, in the research and broader communities, the word billion attached to the disease Long COVID — only a handful of diseases get funded to the tune of a billion or more per year — and provided a simple focus point for advocacy in the community. It was the kind of spark that you need to light a fire.

A few weeks after our first action, where we rallied the community to contact their Congressmembers, a second, much larger spark landed. In January 2024, Sen. Bernie Sanders convened a Senate hearing for Long COVID, and the call for a research moonshot gathered a great deal of press and community attention. In a move that went beyond what we could have hoped for in such a short time, Sen. Sanders followed this hearing by introducing a Long COVID Moonshot bill in the summer of 2024.

Given the timing a few months before a presidential election and the gridlock in Congress, it was unlikely that the bill would get passed that year. But we needed to maintain the campaign in the hope of reintroducing it the following year with more momentum and more sponsors. But by that point many of us were burned out, and the planned break we took became permanent after Trump’s reelection. The bill is still stalled today.

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Along the six-month or so journey with Moonshot, I learned that advocacy is both easier and harder than I expected. Still, to the extent that it may be easier than you thought, I would encourage anyone considering it to get involved — because if anything deserves to make it to the top of the list, it’s Long COVID and infection-associated chronic conditions.

It’s all the more important now, as the public treats the pandemic ever more as a fading memory, and the precious momentum built up in the last few years is in danger of stalling.

You may at least learn something, and you may be able to share it with others in the community so that they, if not you, might be successful. In that spirit, I would like to share a few things here that I learned in my brief time with Long COVID Moonshot.

A white cartoon rocket ship superimposed over a background of blue, purple, pink and light orange clouds — Lisa Kava / Long COVID Moonshot

The right place at the right time

Policy and politics is a lot about being at the right place and at the right time, and luck certainly played a role in Long COVID Moonshot gaining momentum. Still, I think we did a lot of things right that helped Moonshot catch fire. Those include:

Having a very straightforward story and “ask”: What we wanted was very simple to explain and easy to remember — 1 billion dollars for Long COVID research. It was an audacious “ask” but not beyond reason, and we could piggyback off the prominent Nature op-ed from established leaders in the community as well as an established formula for previous “moonshot” efforts for research on other diseases, including cancer.
Strong branding and creative direction: One of the founding members of Long COVID Moonshot is a very talented creative director. She developed the logo, brand, and visuals that gave us a professional look and rocketed Moonshot into the community’s consciousness.
Well-known representatives: Most of the founding members of the group were people who were well known in the Long COVID community, especially across social media, which helped to build trust early on.

Going to the moon?

The exact moment that we had in 2024 may not come again, but there will be new opportunities, asks, and momentum worth latching onto for advocacy. We had two goals: to encourage and empower the community to speak up to their elected representatives about Long COVID, and provide a liaison point to elected representatives interested in improving policy and research into the disease. While we focused solely on research, other movements also work on healthcare access, public health, and social support.

To make this work, I wish we’d had:

Spokespeople: People whose symptom baselines were high enough to be available on short notice for interviews with news outlets, including on TV. Ideally, we would have a few of these people scattered across the country (since having people local to a particular paper or station is golden), representing the breadth of the community.
Policy contact points: People who could attend meetings with decision-makers and provide input and feedback. In our case, these were National Institutes of Health (NIH) leaders as well as the Congressional and Senate appropriations committees. Some of these congressmembers and their senior staff have a track record of supporting Long COVID or related past efforts — get to know them!
- Ideally, these policy contacts could also provide input and feedback for legislative and other budget processes. They could share references like statistics about Long COVID’s magnitude, severity, and economic impacts, possible solutions, comparison points for NIH funding, useful reference legislation, including previous failed Long COVID legislation, or successful legislation for other diseases like the Kay Hagan Tick Act.
- Don’t assume that policymakers have all these references — they might have a dozen such meetings in the day. If you can do their homework for them, you’ll make it more likely that they’ll follow through.
Community connectors: People to connect all the advocacy activities with the broader Long COVID community — keeping folks updated with progress, getting input, collaborating with other groups, “making noise,” holding events and protests, and connecting the community with opportunities to put support behind the issue.

Building your advocacy toolkit

You will need to learn a few things to be an effective advocate: how to deal with the press, how to engage with policymakers, how to build a case for change. Many are easier to do than they sound, and great guides are available online.

Legislation is often cookie-cutter and can be very short (a couple of pages!). There are a lot of explainers online about the appropriations process, and many other advocacy organizations put out call scripts, letter scripts, and guides to engaging with Congress, including background information on Senators.

A few other tips to help get you started:

Writing a press release: Issuing a short press release can help get your story picked up by news organizations. A press release is often just a few paragraphs with some good quotes. They often include an intro paragraph with a “who, what, when, where, why” as well as a few quotes explaining the issue and proposed solution, and an additional paragraph with more detail. And remember, if you want something to be news, there has to be a new angle to your story! Why now? Is it an anniversary or awareness date? Is some funding due to run out? Has there been a pivotal study that everyone should know about?

Help the press and politicians help you: Have open-source photos of events, protests, and other actions that you can share with journalists and influencers. You can also have quotes ready for journalists before interviews with your main asks, and fact sheets about Long COVID, your organization, and, most importantly, what you are asking for.
Do your homework: Have reasons for why someone should support you from as many angles as you can think of. Neither the heartbreaking human interest angle nor the economic impact will be enough on its own; you need both arguments, and they need to be robust. Be aware of what policy and legislation ideas have been previously attempted, and what other people in the community are asking for at the moment.

The first and last thing you need is luck

Advocacy is a marathon made up of a thousand sprints. Pacing, especially if you have an energy-limiting disease, becomes ever more important. Just as there will always be more to do than we can do in any given day or any given year, there will always be more advocacy work than you personally can do.

Advocacy is a marathon made up of a thousand sprints. Pacing, especially if you have an energy-limiting disease, becomes ever more important.
Lisa Kava

Try to prepare for whenever that window of opportunity comes. So protect your energy and be mindful of scope creep. Allowing yourself to be focused can be harder than it looks. Coordination, collaboration — it all takes administration and more energy than you might expect. You might learn firsthand why a good project manager is worth their weight in gold. A good collaborator will make every job lighter, while a bad one can make every task take 10 times longer.

If you’re thinking about getting involved in advocacy yourself, know that you don’t have to do it perfectly, and you don’t have to carry it forever. Do what you can, when you can. I wish you the best, and I wish you more luck than we had.

Lisa Kava has had Long COVID since June 2022. Before Long COVID, she worked as a policy officer in social services and housing, with roles in economics and strategy.

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