For millions of immunocompromised people around the world, the pandemic didn’t end when public health measures were lifted. That moment simply marked the beginning of another difficult chapter — one defined by medical risk, institutional neglect and the deep loneliness of feeling left behind.
It’s a reality that Michelle Burleigh, a former banking executive turned healthcare advocate, knows all too well. Over the past five years, Burleigh has focused on creating the kind of support she needed when she was first diagnosed with leukemia. In 2020, she launched Immunocompromised People Are Not Expendable (IPANE), a global online support group that helps people feel less isolated and better equipped to navigate healthcare systems.
Burleigh spoke with CML Life about the importance of making space for others in a world that often looks the other way.
Can you tell me a little about IPANE? What inspired you to start the group in the first place?
I was diagnosed with acute promyelocytic leukemia in 2017 and spent 26 months in treatment. Just a few weeks after I finished, the first COVID lockdown began. We had a small party to mark the end of treatment, and then I was right back in isolation. This time, it wasn’t just about avoiding a virus. It felt like the world didn’t want to acknowledge the risk and people like me were being overlooked. That was hard to accept.
I knew others had to be experiencing the same thing and I also wanted the broader public to understand that people who are immunocompromised are everywhere — they’re parents, sons, daughters, health workers, grocery store clerks. These are invisible disabilities, but our lives are worth protecting. Out of that anger and urgency, I started a Facebook group in October 2020 called Immunocompromised People Are Not Expendable (IPANE).
People started pouring in, looking for a space where they could feel safe, be heard and share information. By 2022, we had nearly 2,000 members from around the world, with the majority in Canada, the U.S., the U.K. and Australia, and others from places such as India, the Philippines and South America. Over time, it’s become a gentle, kind community that many describe as invaluable in their ongoing fight for health equity.
Did you feel there was a gap in support for immunocompromised people when you started out?
Yes, there was definitely an absence. As I moved from a 25-year career in corporate banking and finance into healthcare advocacy and consulting, I noticed that while there were plenty of groups for specific diseases or demographics — breast cancer, rheumatoid arthritis, MS, young adults — there was nothing that brought immunocompromised people together across conditions. That mattered to me, because the challenges were the same, and I wanted to create a space where those collective experiences could be seen and understood.
Has your group been able to influence public policy, healthcare, access or awareness?
Yes, absolutely. Early on, as IPANE grew, we started getting media attention. I did a radio interview in the summer of 2022 with a CBC syndicate and AstraZeneca, and a not-for-profit out of Alberta caught wind of it. They had gathered patient organizations to ask two questions: Is there a gap in Canada’s healthcare system for immunocompromised people? And if so, can we do something about it? The answer was yes on both counts and they invited me to join the conversation.
After more than a year of working with that group to identify issues and opportunities, I was asked to co-chair what became the Canadian Immunocompromised Advocacy Network, a national coalition of patient organizations and advocates working to improve health equity. What began as a global peer support group has grown into a Canadian movement, and now, those same conversations are happening globally. I’m sitting at tables with international partners, exploring how we scale this up and create global standards for immunocompromised care.
We’re already starting to see real progress. Just recently, one of our network members, ImmUnity Canada, supported a man in B.C. with primary immunodeficiency who was denied workplace accommodations. He took it to the Human Rights Tribunal and won his case. He was awarded two years’ wages and compensation for emotional distress. It’s a breakthrough that validates the rights and needs of immunocompromised people — not just in healthcare, but in employment and public life. Change is happening. It’s happening at a very slow pace, but it’s happening.
Could you talk about some of the challenges you experienced when you set up this community?
In the beginning, I wanted the group to be both supportive and raise awareness, so it started out public. That quickly had to change because members were sharing sensitive health information and were worried about their employers seeing them as liabilities, or having conflicts with their families. Support for the group was the bigger need in the moment.
With such a diverse community and heightened emotions, some members were feeling invalidated or disrespected. There were heated conversations, accusations and even personal attacks on me and the admin team. We’ve always supported open expression, but we draw a hard line at vitriol — no attacking anti-maskers, anti-vaxxers, politicians or other members. Even jokes can push the tone in a toxic direction. We didn’t want people to come here for a bitch session; we wanted a soft place for them to decompress and you can’t have both in the same space. I believe kindness, empathy and community can heal a lot of the world’s problems and this group proves it’s possible. If 2,000 people can coexist with near harmony, that gives me the hope and motivation I need for the advocacy work I do every day.
How do you connect with members beyond the Facebook group?
We don’t do much outside the group itself, but one of our moderators hosts weekly Zoom drop-in sessions. Attendance is small, but the people who join are very committed, which is great tosee. Because of privacy concerns and the divisiveness we see in society, we’re careful not to put ourselves out there too widely — we want to protect members’ safety and peace of mind.
Are there any particular stories or feedback you’ve gotten that makes you feel good about what you’re doing?
Our members often thank us for creating a space where they feel safe and that always feels nice. One common issue many people in our community face is they can’t take vaccines or they don’t get protection from them, so they have to rely on others to take precautions — especially in healthcare settings. They feel anxious when their providers don’t wear masks during appointments and they’ll come to the group looking for advice on what they can say in those situations. We’ve had members return after asking for N95s to be worn, saying providers agreed to do it and that made them feel empowered for future visits. It’s a beautiful thing to see.
How have the emotional challenges of managing the group been for you? I imagine it can be a lot to take in
It’s been hard. There are moments of pride and warmth that make it worth it, but it’s definitely been taxing. We’ve had group members express suicidal thoughts and those moments are very difficult. They’re very hard to cope with. I’ve received messages from people saying they don’t feel safe anywhere and I’ve had to send crisis resources or contact local supports. It’s heavy, and being personally attacked while just trying to help can be painful. There have been a couple of occasions where I’ve had to step back. There were times when I deleted all my social media and leaned on the admin team while I took a break. Recharging, for me, has meant hitting the gym, going hiking — or even playing the new Zelda game for four months straight. Whatever it takes to get through. I’m grateful that I’ve always kind of been able to dig in and find the strength to step back up to the plate and move forward for the community.
How do you deal with misinformation from within the group?
We saw it more in the early days, but it’s less common now. Since we’re not medical experts, we use keyword alerts to help flag posts for review. We try to be as open and transparent as possible, but we know people will write their own narratives. During the Israel-Palestine conflict, for example, we missed a few posts that caused friction, and some felt we were taking sides. I don’t follow war coverage for my own mental health, so that was a blind spot for me. We also see tension when members in anti-mask communities feel unsafe wearing protection and are criticized by others for not doing enough. In those moments, we remind everyone that we don’t have to agree but we do have to respect each other and avoid crossing into toxicity.
How do you keep members engaged and feeling supported especially as the group continues to grow? What sort of content do you put out there?
It was easier in the early days, before Meta limited media content from Canadian sources. Members in other countries can still share news but we often can’t see it, which is frustrating. One of our moderators is a cybersecurity professional in Georgia, so she shares tips on protecting yourself online. I focus on updates from my work with the Canadian Immunocompromised Advocacy Network and international partners, especially efforts to support our community here. More than anything, people need hope. In the early days of the pandemic — when people were delivering groceries to neighbours and banging pots for frontline workers — there was a real sense of unity, and immunocompromised people felt included. But as that faded, many were left feeling excluded and less safe. It’s been hard watching the tone shift from community to helplessness, so I try to post things that remind them they’re not alone, they are heard and things can get better. Sometimes that hope is what keeps people going.
Have you had to develop any skills that you might not have previously had, whether just being a leader or an organizer?
There was a time in my life when I was probably a pretty pessimistic cynic — and maybe a little self-centered. But being in an environment where it’s become my job to give people hope and inspire others has really forced me to rethink how I view the world, how I show up in it, and how I support those around me. I’d say this work has definitely made me a softer person. There was a time I would have seen that as a weakness, but now I see it as becoming who I’m meant to be. It’s helped me break down a lot of the armour and preconceived notions I spent decades building and brought me closer to who I’m actually meant to be. I’m incredibly grateful for that.
Has your vision for the community changed at all since you began? If so, in what way?
No, the vision is still the same. The group itself hasn’t changed much but what it’s a part of has. When I started it, it was, well, just a support group, and now it feels like part of something much bigger. I don’t see a huge evolution in the group itself, but I do see it as the cavalry having arrived. Five years ago, I never could have imagined being here or seeing the community grow like this. It’s shown me that anything is possible.
Where do you hope it will be in the next five years?
I hope we can offer more one-on-one, truly patient-centric support. Many patient organizations do this well and I’d like to bring that level of individualized care to the immunocompromised community, even though it’s challenging because of how diverse our needs are. I’d love to expand peer support and even coaching — to help people prepare for appointments, find the right language and feel equipped to advocate for themselves. I’d go so far as to say we’re already on track to make that happen.
Is there anything you know now that you wish you knew before you started IPANE?
It’s really simple — just start. The rest will come. You can learn as you go and find support systems along the way. When I began this journey of community building and advocacy, I worried constantly about not having all the skills or knowledge I needed. That fear of what I lacked held me back, and I think it holds many people back from creating beautiful, successful things. If I had known that, I would have started sooner. I feel that self-limiting thoughts and beliefs stop people from doing important things that could benefit a lot of people.
Also, one of the most important things I’ve done to get myself and the community to where we are is to network. Go out and meet as many people as you can, learn as much as you can and — if you’re able — always say yes. That’s how you build the skills, knowledge and connections you need to really make things happen.