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The Allies and Trojan Horses of Patient Advocacy | Savvy Cooperative | #AskPatients

This is the fourth of a five-part series. Read Part 5 here.

Last week I wrote a post drawing a comparison between "All Lives Matter" and "we are all patients.” My thesis being that just like how some well-meaning people at the start of the Black Lives Matter movement didn’t understand the harm when they said “All Lives Matter” (some of my family members included), there are those who go around saying “we are all patients” without knowing the harm it causes those of us who live with a chronic or terminal illness day in and day out. I wanted to name that harm.

I knew going into it that that would be the most provocative piece of the series—which was part 3 of the series unpacking the need to get diverse patient insights. That’s because it (hopefully) forced some introspection about how one’s actions can make others feel. I didn’t write it to shame people, I wrote it to practice some radical candor with the colleagues and the industry that I care about so dearly. I wrote it because I believe the industry is ready for this conversation. 

So if you’re willing to go on this journey with me, let’s draw a few more parallels and explore the concept of allyship, something with which I imagine many readers can relate.

These times they are a-changin'

Today marks the one year anniversary since George Floyd's murder, a moment that served as a catalyst to amplify the civil unrest of the past year. And I say “amplify” because it is not that there wasn’t unrest before, but something changed when Floyd’s murder was caught on tape by a brave teenager: people outside of the initial Black Lives Matter movement began to speak up.

As a New Yorker with strong ties to the activist scene, I have experienced the growth of the Black Lives Matter movement—from the early days in 2013 related to the killing of Trayvon Martin to its prominence in 2014 after the killings of Mike Brown and Eric Garner. When I took to the streets back then the vibe was different, the composition of the crowd was different, the coverage was different. To many at the time, talking about BLM and the need to create equity for Black and Brown bodies was a controversial, fringe conversation. 

But last year, Black Lives Matter became a mainstream conversation. My social media feed lit up with even centrist and conservative friends speaking out and attending protests (or at least posting a black square on Instagram). Big brands got behind the movement by issuing statements, with some airing provocative ad campaigns. This was different. Standing on the shoulders of generations, the world was waking up, and the allies were showing up.  

Allies on the inside

Patent advocacy is on a similar trajectory. We stand on the shoulders of HIV/AIDS activists of the 1980s. Organizations like the AIDS Coalition to Unleash Power, also known as ACT UP, wouldn’t take ‘no’ for an answer when it came to having the voices of the HIV community heard. 

One of the most storied ACT UP demonstrations shut down the FDA for a day. Over 1000 protesters occupied the agency’s campus in an effort to demand, among other things, a shorter drug approval process, ending double-blind placebo-controlled trials, and enrolling diverse HIV patients in clinical trials, including women, children, people of color, IV drug users, and people at all stages of HIV infection. But in order to make progress towards these goals, it took allies on the inside.

The world has become very familiar with one high profile HIV/AIDS ally, one Dr. Anthony Fauci. While the COVID-19 pandemic made Fauci a household name, he has had a long career in infectious disease and epidemics, notably HIV. After the HIV community put pressure on the FDA and NIH, where Fauci worked even back then, he became one of their strongest internal champions, advocating to his professional colleagues that those living with HIV must be included in the conversation around treatment decisions and drug development. He used his privilege to help others get a seat at the table.

Allies, we need you

The theme of this series has been one of trying to get people to recognize that we must leverage a multi-stakeholder approach. As I continue to argue the value of the patient perspective, this is not to dismiss the value and necessity of other stakeholders. 

My friend and colleague, Lygeia Ricciardi commented on last week’s blog that cautioned against saying ‘we are all patients,’ noting that “it's a good conversation to air publicly” as she acknowledged her perspective “as someone who has spent many years advocating for and on behalf of patients, yet doesn't primarily "identify" as a patient.” I so appreciated her calling this out as a particular type of stakeholder, because we need people exactly like her to make change from the inside.

Our patient engagement allies are oftentimes better positioned to affect change in ways that many patients can’t. We need you to convince your colleagues that engaging patients is a smart business decision, to ask tough questions in meetings, to push back when people talk about product roadmaps, budgets, and timelines that don’t include patient insights, to be that squeaky wheel on our behalf. 

For those of you already in the room, we are counting on you to come over, open the door and invite us in so we don't have to return to the days of our brave ACT UP predecessors and force our way inside. 

Trojan horses, a rare breed

At the center of the Venn diagram between patients and allies, you have a special breed, that of which my dear friend, pharma guru, and rare disease patient himself, Craig Lipset, pointed out in a comment to my last post, saying “Many who work in healthcare and life sciences ARE patients living with chronic (and occasionally) rare diseases. These individuals are often silenced because they have a badge and business card from a health system or pharma company, and not given the space to share their story and experience. We should celebrate the power of these complementary voices, not to dismiss or replace other key patient voices but to stand alongside with their own unique patient perspective.”

I wholeheartedly agree! I was not saying that these folks can’t identify as patients, not at all. In fact, these individuals have both a coveted seat at the proverbial table AND lived experiences that help them see that patient perspective is wildly valuable. While I wish that diverse patients were consulted at each and every relevant decision point, I am also aware that that ain’t happening, which is why these individuals become increasingly important to keep colleagues and conversations advancing in the right direction outside of patient engagement activities. I think of them as the Trojan horses of the healthcare industry. And I know many of them. 

In my first post of the series I put myself in the hot seat, calling out how I could not speak on behalf of all other patients with my condition (let alone other conditions), which is what led me to founding Savvy Cooperative so I could help other patients have a seat at the table. And this is the role I have seen these Trojan horses play. They use their privilege as insiders to advocate for working with patients, to nudge their colleagues into thinking differently, and, sometimes, to put their jobs on the line to do so. 

A couple of years ago, Savvy was working with one of our pharma clients in one of their rare disease pipelines. And wouldn’t you know it, the pharma employee from the team who reached out to us actually had that rare disease herself! Talk about a Trojan horse! She was passionate and adamant that her colleagues needed to hear from more patients so they could more fully understand their experiences treating this rare condition. She fought hard for it, ruffled feathers, and confided in me that she thought her job might be in jeopardy for doing so. I’m pleased to say that she is still there, shaking things up, and has produced some tremendous patient insights research because of her conviction and ability to get buy-in from her colleagues. 

Allyship in action

All this to say: allies, we see you, we need you, we appreciate you. This movement take all of us, patients and allies alike. Don’t take our cries to be seen and heard as a signal that we don’t want you to take a stand—we do!—but sometimes the best way to stand up for us is to sit down. Similar to how many people observed #BlackoutTuesday or #AmplifyMelanatedVoices, we ask that you make space and amplify the patient voices who frequently go unheard. 

If you made it to the end of this post, I challenge you to spend the next 60 seconds reflecting on where you sit in the healthcare ecosystem. Who can you directly influence? Who can you open doors for? Which patients will you welcome inside? Feel free to write it down! If we all examined our privilege and where we could make an impact, we could really crank up that patient-centricity dial. I’ll start the timer now...

Thanks for reading! Continue the series with part 5 here.

About Us

Jen Horonjeff, PhD, is a life-long autoimmune disease patient and brain tumor survivor turned human factors engineer, academic, FDA advisor, and now the founder & CEO of Savvy Cooperative.

Savvy Cooperative helps the healthcare industry create patient-centered products and solutions by providing a marketplace for patient insights. Pharma and startups alike can connect directly with patients to participate in clinical, UX, and market research. Savvy’s unique co-op model leverages its members’ networks to quickly recruit diverse patients, and pays patients for sharing their insights! Savvy’s award-winning co-op has been featured in FastCompany, TechCrunch, The Boston Globe, and named one of the 50 Most Daring Entrepreneurs by Entrepreneur Magazine.

Jen Horonjeff
Post by Jen Horonjeff
May 25, 2021
Jen Horonjeff, PhD, is a life-long autoimmune disease patient and brain tumor survivor turned human factors engineer, academic, FDA advisor, and now the founder & CEO of Savvy Cooperative.