Before any of the titles — before the doctorate, before the office with “Pain Policy” on the door — there was a community pool in the Washington, D.C. area, and a swim coach trying to get every kid on the roster into the water.

Some of those kids were living with chronic illness, including chronic pain. Laura Wandner worked with them and their families to build a team where they could participate and belong — where a summer of swim meets could feel, in her words, “as normal as possible.”

What almost nobody at that pool knew: the coach was learning the same lesson from the inside. “I have lived with chronic pain since I was a teenager,” she says, “and that experience has evolved over the years.” Like so many of us, she had to learn to balance her health against the demands of work and everyday life. The answer she landed on will sound familiar to anyone who has turned their own pain into advocacy: “Focusing on helping others has allowed me to look beyond my own pain and stay engaged in the parts of life that are most meaningful to me.”

At ten, she wanted to be an astronomer — drawn to the idea of discovering things no one had known before. She never left the questions behind, just the telescope. “The curiosity that first drew me to astronomy,” she says, “is the same curiosity that continues to drive my work today.”

The Inside of the Acronym

Most of us have only ever seen the NIH from the outside — an acronym on a funding line, a campus we’ll never walk. Laura walked it twice. The first time was as a summer intern at the National Institute of Mental Health. The second time, after years of caring for people at the VA and Walter Reed, she returned because she wanted to reach more people than one clinic could hold — and served as Branch Chief of the Office of Pain Policy and Planning at the National Institute of Neurological Disorders and Stroke.

Because pain cuts across so many conditions and specialties, her office helped coordinate pain research and policy across the NIH and the federal government. “One of the aspects of the job that meant the most to me,” she says, “was helping ensure that people with lived experience had a meaningful voice in research and policy, not simply as participants, but as true partners.”

She calls the role “the honor of a lifetime.”

So what did the inside teach her that would surprise the people with pain on the outside? Two things, mostly. First, how much advocacy actually moves the needle. Efforts like Migraine on the Hill, she says, have raised the profile of migraine research and encouraged conversations about expanding the NIH portfolio. “The voices of people with lived experience truly matter and can help shape future research priorities.”

Second, how much of the funding map is drawn by Congress. NIH can only fund what the federal budget allows, and Congress can also direct money toward specific priorities — the HEAL Initiative, a major federal investment in pain and addiction research, exists because Congress appropriated for it. The lesson for advocates: the room where research gets shaped isn’t only in Bethesda. Some of it is on Capitol Hill, and we’re allowed in both.

Deciding What to Share

Through those years, Laura’s lived experience was not a secret, exactly — it was known in graduate school, and some close colleagues and members of her NIH office were aware. But it wasn’t something she talked about often. Early in her career, she says, there was more uncertainty about how a disclosure might land professionally.

Her honest accounting now: “I’ve never had a disclosure negatively affect my career or professional relationships.” And her principle is one this community should hear: “I believe everyone should decide for themselves what they are comfortable sharing. There is no right or wrong approach to disclosure.”

Whether or not she named it in the room, the experience shaped how she worked. It reinforced, she says, how important it is to include people with lived experience “not as an afterthought, but as genuine partners” — and it reminded her that no single person’s experience represents everyone, which is why a diversity of voices matters at every table.

What Engagement Looks Like When It’s Real

Ask Laura to define patient engagement and she draws the line exactly where this newsletter draws it: “There is a meaningful difference between inviting someone to observe a process and inviting them to be an equal partner in it.”

She has watched that difference play out in concrete terms. In the Acute to Chronic Pain Signatures program, a person with lived experience serving on the program committee reviewed the study protocol and participant materials and flagged a mismatch: the time being asked of participants and the reimbursement being offered didn’t line up. Investigators and NIH staff had seen the problem too, but finding money to fix it had stalled. Once the committee member raised it and it was documented in a report to NIH leadership, program staff used that feedback to advocate for supplemental funding — and participants were compensated more appropriately for a demanding study.

One committee member’s careful read, put on the record, helped move a budget line.

She has also seen the other side, and she names its shapes without flinching: the PWLE listed on a grant application who has no real role once the project begins, and the “person with lived experience — TBD” who never materializes. She has watched conferences get planned start to finish before anyone with lived experience is invited to speak.

But her diagnosis of tokenism is more generous than most — and more useful. “In many cases, I don’t believe this comes from a lack of good intentions,” she says. “It often reflects a lack of experience, infrastructure, or resources.” Many researchers want to partner and have never been trained to. That’s not an excuse; it’s a to-do list.

And for the people still inside — program officers, reviewers, institute staff — her clearest advice starts with a comparison every advocate will recognize. When researchers attend a conference, their travel is covered and their salary continues; they’re there as part of the job. A person with lived experience is often taking time away from work or caregiving to contribute their expertise. “Covering travel alone may not be enough to enable their participation,” she says. “Appropriate honoraria acknowledge that their time, knowledge, and lived experience are valuable forms of expertise.” The biggest barriers, she’s careful to add, “are often not the people at NIH, but the policies and systems they work within.”

On the ENGAGE report — the NIH framework this newsletter has spent two issues unpacking — she offers the view only an insider can: admiration for the document, and honesty about the moment it landed in. NIH has been through a reduction in force, and some of the staff with the deepest patient-engagement experience are no longer at the agency. “Meaningful patient engagement requires time, planning, relationship-building, and institutional support,” she says. Her hope is that as the agency regains stability, ENGAGE gets the attention and support it needs for real implementation.

That reduction in force reached her own door. The Office of Pain Policy and Planning was eliminated, and Laura’s answer about it is unguarded: “I was deeply disappointed. I truly loved my job and believed strongly in the mission of the office.” What she misses most, she says, is the people and the opportunity to serve.

The Next Chapter

Life after NIH has stabilized into something full. Laura is now an Associate Professor at the Icahn School of Medicine at Mount Sinai, where she conducts pain and migraine research and mentors early-career clinicians and researchers. She contributes to work at the University of Michigan and still sees people through her private practice, Wandner Health and Wellness. She still advises researchers and organizations on patient engagement.

And she is stepping into the chapter she talks about with the most excitement: becoming a first-time mom. She’s expecting a daughter — and, she says, “plenty of changes, challenges, and wonderful moments.”

She still swims — she swam competitively through college, and the water remains her favorite place to clear her mind. The pool where this story started never really closed.

The Door in the Fortress

To the PWLE reading this who assumes the NIH is a fortress with no door in it for someone like them, Laura offers a map. Start by building relationships with local and national organizations where people with lived experience already gather, because that is exactly where NIH staff look when they need partners for advisory committees, workshops, and research initiatives. Don’t be intimidated by the people who work there. “Program officers and other NIH employees are people who genuinely care about improving research and patient outcomes,” she says. Her suggestion, once you’re involved with an organization: “Don’t hesitate to reach out by email or introduce yourself at a scientific conference.”

And don’t discount what’s local. Serving as a research partner on one study, or joining one advisory board — “every meaningful partnership, whether it’s local or national, has the potential to make a difference.”

Asked what she’d put on a T-shirt, setting aside every title and acronym, she offers the front first: Multidisciplinary Researcher / Clinician / Advocate. Then the back, which may be the truer answer: Connector. “One of the things I enjoy most is bringing people together,” she says — researchers with people who have lived experience, and ideas across disciplines with the people who can use them.

That is what this publication is trying to be, too: not a collection of individual storytellers, but a community that shows up as a team. Laura Wandner spent years inside the agency making room at its tables for people like us. Now she’s on this side of the door, holding it open.

Walk through it — and bring someone with you.

— Tom