The Recipe for Change: From Surviving Appointments to Changing Policy
For a long time, I thought advocacy meant surviving the next appointment.
I thought it meant learning how to explain my pain better, how to prepare for another referral visit, how to justify why I was missing work, school, or pieces of my life to something I didn't even understand for so long, while it was reduced to just part of "being a woman." Like many patients with endometriosis, I spent years fighting to be believed before I ever understood how much of that fight was never actually about me — it was about the system itself. That realization changed everything.
Endometriosis is often treated like an isolated women's reproductive issue, but it is one of the clearest examples of systemic failure in the 21st century. Delayed diagnosis, insurance denials, medical gaslighting, lack of ADA recognition, and repeated surgical barriers are not separate problems. They are connected outcomes of the same design failure.
Cases like Virginia OBGYN Dr. Perwaiz from 2021, who was sentenced for needlessly operating on dozens of women, are often discussed as individual scandals. However, they reveal something much larger — when patients are repeatedly dismissed, overtreated, undertreated, or financially trapped, we are not looking at exceptions. We are looking at a pattern. That pattern is expensive.
In the United States alone, endometriosis carries an estimated annual economic burden of $69 to $86 billion. Patients lose an average of 11 hours of productivity every week, with more than six hours from workplace productivity and nearly five from household responsibilities. That means reduced income, missed promotions, family strain, disability use, and careers reshaped by a disease that many providers still misunderstand. Endometriosis does not just take time away from work. It takes time away from living. That is where policy enters, and that is the part most people do not realize.
Congress may not perform surgery, but Congress influences whether research gets funded. NIH shapes how the disease is defined and studied. HHS drives oversight and accountability. CMS determines reimbursement structures that decide whether trained specialists can remain accessible. CPT coding through the AMA shapes how complex excision surgery is valued. FDA pathways matter when diagnostics and treatment development are still being built on outdated definitions. Then we have ACOG, which is responsible for surgical and treatment guidelines.
This is where advocacy becomes a civics lesson.
Through the American End of Endo Project, we teach people that advocacy means understanding where decisions are made and how to plug in. Our advocacy workshop says it best — advocacy means knowing who is in the kitchen, what they are cooking, and where you can add your ingredients to make the biggest impact. We walk patients through the three branches of government, how a bill becomes law, how appropriations language works, and why constituents matter. We show them how to find their lawmakers, identify committee assignments, understand representative priorities, and make a clear, direct ask. We also share how to use their lived experience to tie it all together.
Most people assume policy work belongs to lobbyists or large organizations. But some of the most meaningful movements happen because ordinary patients decide to keep showing up.
This past year, our AEEP "Oceans 4" team worked together to help contribute to federal appropriations language recognizing endometriosis as a chronic, systemic, inflammatory disease — not simply a reproductive disorder. That language encourages the NIH to use an updated, evidence-based definition aligned with current scientific understanding and to move research away from outdated narratives that have harmed patients for decades. No lobbyists. No big corporate backing. Just lived experience, and persistence. That is exactly what it was.
What looks like one paragraph in federal report language was actually months of calls, follow-ups, research, relationship-building, and learning how to communicate inside rooms never built for patient voices. It meant learning which offices mattered, which committee staff shaped decisions, and how appropriations in one place could springboard conversations with HHS, CMS, and broader federal accountability. That is the unique part of this process.
People often ask how I keep all the moving parts straight, and honestly, the answer is that advocacy becomes less overwhelming when you stop seeing it as random and start seeing it as systems working together, like a giant machine. One meeting leads to another. One appropriations request opens a door to reimbursement reform. One state conversation on PBM transparency connects to broader affordability reform. One workshop creates ten new advocates who now know how to speak to their own legislators. That ripple effect matters.
I saw this clearly during roundtable discussions on PBM transparency and patient affordability this March in Denver. Conversations focused heavily on cost, but I brought in the nuance that patients are still being prescribed treatments based on outdated and even falsified data. Too many people are pushed into repeated hormonal suppression, unnecessary hysterectomies, or endless "band-aid" medication cycles because the healthcare system has not caught up to the evidence. The response in the room was simple — things just need to catch up.
Patients do not live in policy timelines. They live in bodies that are expected to function a certain way.
When a six-hour excision surgery performed by a highly trained specialist is reimbursed similarly to a short procedure done by someone without disease-specific training, that is a structural failure. When insurance companies refuse to recognize surgical complexity, patients are forced into out-of-network care, massive financial loss, or dangerous delays. That is why CMS billing reform and CPT coding reforms matter so much. This is also why the battle is not won and has really just begun.
The appropriations language created a foundation, but there is still work ahead — CMS and CPT coding reform, continued HHS collaboration, FDA pathways for diagnostics and treatment development, and broader agency engagement across the federal landscape. We now have abbreviated agencies mapped and active areas of action to pursue. Genuine collaboration creates movement. That is what success looks like in advocacy. Not a single victory, but a structure being built.
For me, the shift happened when I stopped asking, "How do I survive this appointment?" and started asking, "Who controls the system creating this outcome?"
That changed everything.
Sometimes advocacy looks like legislation. Sometimes it looks like a congressional workbook with references. Sometimes it looks like a workshop teaching Civics 101 to patients who never realized they belonged in those rooms. Because they do.
Real change happens when communities rise up. Every story told, every meeting held, and every voice added creates pressure that systems cannot ignore. Endometriosis is not a niche issue. It is a public health issue, an economic issue, and a human issue. It certainly constitutes a public health crisis at this time.
Once patients understand where they can add their seasonings to the ribeye steak to make the most impact — everything starts to change.
Building Stronger Communities, Together: Reflections from Our Patient Affordability Roundtable
Editor's Note: This article was originally published on April 10, 2026, by Lupus Colorado and is republished here with permission. The Patient Affordability Roundtable discussed in this piece was hosted in partnership with Community Access National Network. Lupus Colorado, led by CEO Kristy Kibler, works to improve the lives of people affected by lupus through advocacy, education, and support services across Colorado. Their work on patient affordability, community building, and state-level policy advocacy strengthens the broader chronic disease patient community that CANN serves. To learn more about Lupus Colorado or donate to support their work, visit LupusColorado.org.
Patient advocates and community organization leaders from across the country convene at the Patient Affordability Roundtable, hosted by Lupus Colorado in partnership with Community Access National Network.
At Lupus Colorado, we know that real progress happens when people come together, share openly, and commit to lifting one another up. That spirit was fully alive at our recent Patient Affordability Roundtable, hosted in partnership with Community Access National Network. This gathering brought together a powerful group of advocates and organizations, including End of Endo Project, Mamas Facing Forward, Chronically Informed, ACT NOW, CF United, Chronic Care Collaborative, Michigan Lupus Foundation, National Bleeding Disorders Foundation- CO and Colorado Patients Taking Action.
Centering Community as a Strategy
One of the most meaningful threads throughout the roundtable was a deep and intentional conversation about community building, not just as a value, but as a strategy for change.
We had the opportunity to dig deeper into what it truly takes to build and sustain a strong, effective community. At Lupus Colorado, we see every day that investing in people drives lasting change. Our ongoing collaboration with partners like ACT NOW, CF United, and Chronic Care Collaborative reflects a shared commitment to trust, connection, and leadership that strengthens the entire ecosystem. When we intentionally support one another and follow through on that investment, individuals step forward not just to participate, but to lead, advocate, and create meaningful change for their communities.
That insight carried throughout the conversation. Community is not built overnight. It is cultivated through consistency, care, and a willingness to grow together.
A Deeper Look at Affordability and Who It Impacts
Building on that foundation, the group explored one of the most important questions in our work: how we define affordability.
Too often, systems are designed around averages, what works for a typical patient. But in our communities, especially among those living with complex, chronic conditions like lupus, there is no such thing as typical.
We discussed the distinction between common and complex patient experiences and how policies that appear effective on paper can fall short when applied to real lives. This conversation reinforced a shared understanding that affordability must reflect lived experience, not simplified models.
Learning Across State Lines
These conversations naturally expanded into a broader exchange of ideas across states.
While each state operates within its own policy landscape, many of the challenges we face are deeply aligned. From patient protections to reimbursement policy and affordability frameworks, participants shared both barriers and promising approaches.
There is real momentum in learning from one another. Every insight shared strengthens our collective ability to advocate more effectively and to bring forward solutions that are grounded in both policy and lived experience.
Policy Conversations That Matter
With that shared understanding, the roundtable created space for focused, solutions-oriented policy discussion.
We explored key issues including PDAB reform, concerns related to QALYs, PBM loopholes, and fiduciary responsibility, along with the importance of rebate pass through, stronger patient protections, and oversight of Alternative Funding Programs to ensure patients are not unintentionally burdened. The conversation also emphasized the importance of building informed legislative champions who can advance patient-centered solutions.
Honoring the Patient Voice
Equally important was an honest conversation about the human side of advocacy.
For many individuals, participating in the legislative process means revisiting deeply personal experiences. We acknowledged the reality of re-traumatization and the responsibility we share to create spaces that are not only impactful, but also supportive.
Advocacy should empower, not exhaust. As a community, we are committed to elevating patient voices in ways that also protect and support those who share their stories.
Moving Forward, Together
What emerged from this convening was more than a list of challenges. It was a shared sense of direction and a renewed commitment to working together.
We move forward with stronger relationships, new ideas, and deeper alignment around how to create meaningful change. By continuing to invest in our community, elevate patient voices, and collaborate with partners across the country, we are building a future where access, affordability, and dignity are not aspirations, but expectations.
Together, we are shaping systems that work better, care deeper, and reach further. And that is where real progress begins.