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 FDA pathways matter when diagnostics and treatment development are still being built on outdated definitions.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.

The False Economy of Rationing Life

Across the country, states are making a choice. Faced with budget shortfalls driven by flat federal funding, the expiration of enhanced ACA premium tax credits, and the downstream wreckage of H.R. 1's nearly $800 billion in Medicaid cuts, they are choosing to solve their fiscal problems by restricting access to the medications that keep people living with HIV alive and stop the virus from spreading. Eighteen states have implemented cost-containment measureson their AIDS Drug Assistance Programs, with five more considering changes. Florida slashed ADAP eligibility from 400% to 130% of the federal poverty level on March 1, cutting off more than 12,000 people and removing Biktarvy, which accounts for 52% of the U.S. ARV market, from its formulary. Louisiana is considering HB927, legislation that would repeal the state's long-standing statutory protections against prior authorization and step therapy for antiretrovirals in Medicaid.

The pressures are real. ADAP enrollment surged 30% from 2022 to 2024 as states shed Medicaid enrollees after the pandemic. NASTAD's February 2026 ADAP Watch reports 19 ADAPs forecast deficits for the upcoming fiscal year. When adjusted for inflation, ADAP appropriations have declined 31% since 2005, with the FY2025 appropriation carrying roughly the same purchasing power as FY1999 levels. Nobody disputes the math. What we dispute, forcefully and on the evidence, is the response.

Utilization Management on ARVs Is Clinically Indefensible

Step therapy requires a patient to "fail" a medication before accessing the one their provider has already determined is best for them. In HIV treatment, failure means the virus has replicated in the presence of inadequate drug levels and potentially developed resistance, rendering the entire associated drug class less effective or ineffective. For someone on PrEP, "failing" a regimen means they have seroconverted and acquired HIV, possibly with resistance that limits their treatment options from day one. Prior authorization creates gaps in access while paperwork is processed. Drug resistance can develop within several weeks of stopping ART, as some components of a combination regimen remain in the body longer than others, leaving HIV exposed to one or two drugs instead of a full suppressive regimen. CD4+ cell counts can decline by up to 100 cells/mm³ within weeks of interruption. The SMART trial demonstrated that episodic ART interruption was associated with increased risk of opportunistic disease and death, findings so conclusive the strategy was abandoned entirely.

The CMS Medicare Part D Manual specifically notes that utilization management tools like PA and step therapy are generally not employed in best-practice formulary models for HIV/AIDS drugs. The American Academy of HIV Medicine issued a white paper with a single recommendation: HIV medications should be exempt from prior authorization requirements. As of 2019, 14 states had enacted laws prohibiting at least some UM techniques for ARVs. The broader health policy world is arriving at the same conclusion about PA generally: a January 2026 KFF Health Tracking Poll found that four in ten people with chronic conditions say prior authorization is their single biggest healthcare burden beyond costs, and KFF President Drew Altman has openly questioned whether its short-term cost control benefits are worth the costs to patients in an already overburdened system. If the mainstream is questioning PA broadly, the case for applying it to ARVs, where the clinical stakes include drug resistance, viral transmission, and death, does not exist.

The Math Doesn't Work, and the Motive Is Worse

Here is where we need to stop treating this conversation as though it is happening in good faith.

The stated rationale for stripping UM protections from ARVs is cost containment. But anyone who has watched private insurance markets operate over the past two decades recognizes what utilization management on high-cost drug classes actually produces: leverage. Private payers have used UM as a negotiating tool for years, threatening to restrict formulary access unless manufacturers offer deeper discounts. The people whose treatment gets disrupted in the process are the collateral damage that makes the threat credible.

CANN has been warning for years that as state Medicaid programs face mounting budget pressure, the temptation to adopt this same playbook would grow. That is exactly what is unfolding. When states impose PA and step therapy on antiretrovirals, the practical effect extends well beyond cost management. It creates a bargaining position where patient access to life-saving medication becomes a concession to be traded for supplemental rebates from manufacturers. This is the private payer model of healthcare as revenue generation imported into public health programs responsible for managing a communicable disease. It transforms the health of people living with HIV into a bargaining chip, and it represents a fundamental betrayal of what public health programs exist to do.

The people whose medications get delayed, whose viral loads rebound, whose resistance profiles narrow while prior authorizations are processed are not an unfortunate side effect of this model. They are the leverage. That is not healthcare. It is government treating public health as a profit center.

The economics don't support it either. Every new infection from someone with a detectable viral load carries an estimated lifetime medical cost of $326,500, with the cost avoided by preventing that infection estimated at $229,800. More recent analyses from HIVMA put average lifetime expenditures between $500,000 and more than $1.2 million. A Precision Health Economics analysis estimated that allowing UM on Part D antiretrovirals alone could result in over 6,750 new HIV infections. Whatever supplemental rebate a state might extract by threatening formulary restrictions will be dwarfed by the downstream costs. And in a U.S. cohort studied between 2021 and 2023, 28% of people with HIV experienced a treatment interruption of 90 days or more, with those affected disproportionately women, Black, dealing with substance use, and less likely to have commercial insurance. These barriers concentrate harm on the people who are already most structurally vulnerable.

We Have Already Watched This Fail

We don't need to theorize. We watched it happen with Hepatitis C. For years, state Medicaid programs and MCOs imposed PA, step therapy, sobriety requirements, and prescriber restrictions on curative direct-acting agents for HCV. People were denied treatment while their disease progressed. By the end of 2025, 34 jurisdictions had removed PA requirements for most Medicaid HCV patients, reflecting the national consensus that those restrictions never served patients or budgets. Louisiana itself now receives an "A" grade for HCV Medicaid access. As CANN's letter to Vice Chair McMahen on HB927 notes, the bill proposes substantially similar risks to HIV medication access as those once imposed on HCV, in a state that passed model PrEP and PEP legislation in 2024 that these same UM tools would undermine.

What Must Happen

Florida's own legislature proved these cuts are not inevitable when it passed HB 697 in mid-March with $31 million to restore ADAP eligibility for over 11,000 people. Bipartisan, responsive, and proof that different choices are available when the political will exists.

States must fight for adequate federal ADAP funding, which has been flat-funded since FY2014 while program costs have grown relentlessly. They must leverage 340B rebates and supplemental funding rather than cutting the people the programs exist to serve. They must design Medicaid formularies to ensure access following federal HIV treatment guidelines, not undermine them. And their federal legislators should realize that if we can fund the Department of Defense at a trillion dollars a year, we can surely pay to keep people from dying from AIDS.

There is no clinical necessity for removing ARV protections. Doing so will not balance budgets. It will create drug resistance, increase transmission, push people into more expensive care settings, and compound the harms of H.R. 1's Medicaid budget cuts and work requirements, which threaten coverage for 42% of Medicaid enrollees with HIV. At every level of analysis, this approach fails. What it succeeds at is transferring the cost of federal policy failures onto the bodies of people living with HIV, and that is not fiscal responsibility. It is abandonment dressed in budget drag.

Cabenuva Approved for 2 Month Injections; Insurers Remain a Barrier to Access

In late January of 2021, ViiV Healthcare and Janssen Pharmseutical Companies announced the Food and Drug Administration’s (FDA) approval of the first extended-release injectable medication regimen for the treatment of HIV as a once-monthly administration, branded as Cabenuva. Eleven (11) months later, the FDA approved cabotegravir as an extended-release injectable suspension for the prevention of HIV as a once-every-two-month administration, branded as Apretude. Again, on February 1, 2022, the FDA expanded Cabenuva’s administration to be a once-every-two-month administration. Near overnight, people living with HIV-related medication therapy and prevention efforts went from a burdensome three-hundred sixty-five (365) pills to six (6) injections.

This kind of innovation has been long anticipated and while advocates and patients recognize not every patient will desire to switch to injectable medications and resistance profiles may require some people living with HIV to maintain their tablet regimens, injectables offer yet another tool in the tool box. The extended-release nature of injectables offer an opportunity to overcome “treatment fatigue”, reduce opportunities for missed doses and subsequent treatment resistance, and even address safety in storing medications at-home – especially for those people living with and at risk for acquiring HIV that may also be experiencing houselessness. This becomes even more of an astounding tool, in addressing disruptions in care when patients live in areas prone to natural disasters, as seen in Florida during Hurricane Michael when the state’s central pharmacy operations came to a halt, forcing the state to rely on a private-public partnership with CVS, and in Puerto Rico after Hurricane Maria, in which patients lost access to life-saving medications. The issue of natural disasters interrupting care is not new and will likely be something providers and patients need to have plans for as every indication exists climate change will produce more and more powerful hurricanes. Indeed, despite the lessons learned from Hurricane Katrina, I personally witnessed multiple calls across social media channels among people living with HIV seeking additional medication in order to manage loss of their anti-retrovirals in 2021, during Hurricane Ida. Despite the state of Louisiana and the department of Health and Human Services declaring a public health emergency and activating the Emergency Prescription Assistance Program for uninsured and underinsured patients, anecdotal reports found the program hard to manage for those who needed daily administration of medications.

Yet and still, despite these incredible advancements at our finger tips, both public and private insurance programs remain reticent to allow patient and provider choice to guide what therapies patients actually have access to. Indeed, one of the largest payers in both the public and private spaces is CVS Health, who, on December 16, 2021, published priorities in “weighing cost” versus clinical benefit while specifically naming cabotegravir as an active agent in Cabenuva and Apretude. The payer outlines tactics known as “utilization management” to include initially blocking coverage of new drugs, “strongly favor[ing] generic use”, and “select[ing a] preferred agent generating lowest net cost option in category”. Even some AIDS Drug Assistance Programs (ADAPs) are delaying adding the innovative therapy to their coverage formularies. All of which creates a system of care where people living with HIV are experiencing limitations on their access to effective therapies based on their income, rather than their need as determined by them, as patients, and their provider. Deny-first utilization management practices risk losing people to care by creating unnecessary and burdensome administrative process and delays.

When Cabenuva was first approved, advocates in the community and among public services stressed concern about getting patients to return for monthly shots and the logistics of administering the shots. The concern on costs to public programs also raised its head and has done so even more recently as a limited study concluded Apretude wasn’t “cost-effective”. However, in the time since these initial discussions, tens of millions of people have received their COVID-19 vaccines, which are situated a mere 3 weeks apart and variant development has left many experts expecting the need for annual boosters of the same. The logistics of administering shots have clearly been addressed. As for the “cost-effectiveness” study, the limitation the authors cite is one that’s patently…ridiculous: “Uncertain clinical and economic benefits of averting future transmissions.” We well know the clinical benefits of preventing transmissions means fewer HIV diagnoses, a goal outlined by the United States’ federal government in the Ending the HIV Epidemic initiative, and the economic realities of preventing new transmissions is as apparent in reducing the costs of care associated with stagnant or even rising transmission rates.

The truth is, long-acting anti-retroviral therapies are the next step in innovation at extending effective care to people at risk of acquiring and living with HIV. These advancements will come with a cost that is significantly outweighed by improvements in patient quality of life, retention in care, and reduction in new transmissions. If we aren’t careful in ensuring equitable access to these innovations, existing health disparities will only grow. Barriers to care originating from payer processes, from formulary inclusion to co-pay accumulator programs, should be well-documented by providers and advocates need to be forceful in seeking access to these innovations for all patients, regardless of income or economic status. Policymakers, lawmakers, and regulators need to move quickly to address these barriers. Innovation waits for no one and that which exists in the balance between these interests are people’s quality of life and their very lives.