The Proverbial Picnic Tables Were a Nice Touch
If you want to understand how the American Society of Clinical Oncology thinks about patient advocacy, you could examine its strategic plans, annual reports, and public commitments to patient engagement. Or you could ask someone who has spent 20 years watching the furniture change.
When I first started attending ASCO’s Annual Meeting as the founder of Stupid Cancer, patient advocates occupied a collection of lousy picnic tables somewhere toward the back of the exhibition floor. We had our organizations, brochures, compelling stories, and approximately the same institutional importance as the coat check. Most attendees had more pressing business elsewhere, which made sense given the extraordinary concentration of scientific, clinical, and commercial activity happening around us. Still, the physical arrangement communicated something about where patient advocacy fit into the conference’s priorities.
Over time, the picnic tables gave way to small kiosks. We moved closer to the action, gained a little visibility, and received refreshments that suggested someone had consulted the nutritional guidelines for a moderately successful petting zoo. Eventually, ASCO introduced a proper Patient Advocacy Lounge, expanded the space substantially, improved its location, and added amenities that made the conference considerably more hospitable to advocates. Today, we have somewhere to work, meet colleagues, exchange ideas, and occasionally eat something resembling an actual meal. After years of operating on the margins, these improvements matter.
I appreciate that progress, although I suspect persistent pressure from advocates helped accelerate it. Institutions respond to incentives, and sustained criticism can create incentives for change. The pharmaceutical industry also benefits from greater visibility for patient engagement, both through legitimate collaboration and through the reputational value that comes from demonstrating a commitment to patients. These motivations can coexist without invalidating the resulting improvements. Companies can support meaningful advocacy while also advancing their commercial interests, just as professional societies can improve the patient experience while protecting their institutional priorities.
What remains less clear is whether the evolution of the physical space reflects a comparable evolution in patient influence. The lounge occupies a better location, but I still see relatively limited engagement between its occupants and the broader conference population. The space provides genuine value for advocates who use it, regardless of who visits. Yet if the larger institutional objective involves integrating patients into decisions about research, care delivery, and policy, the size and quality of the room tell us relatively little about whether that objective has succeeded.
After 20 years, we’ve gained better furniture, better food, better visibility, and more opportunities to participate. Those achievements deserve recognition. They also invite a more consequential question about the difference between making patients comfortable within an institution and giving them meaningful influence over its decisions.
That question returned to me recently while watching a presentation about ASCO’s legislative priorities and political advocacy. The slides described an organization with a sophisticated understanding of how healthcare policy actually changes. For someone who has spent 2 decades challenging ASCO to take patient participation more seriously, the presentation offered an unexpectedly useful lesson about what organized influence requires.
The Organization Behind the Conference
ASCO occupies an extraordinary position in cancer medicine. Its Annual Meeting brings together tens of thousands of physicians, researchers, pharmaceutical executives, advocates, and other healthcare professionals whose work influences how cancer care develops and reaches patients. Researchers present findings that may change clinical practice. Physicians debate evidence and treatment approaches. Companies invest substantial resources in demonstrating scientific progress and the commercial potential of new therapies. The resulting concentration of expertise and economic activity helps explain why ASCO has become such an important institution.
As someone who survived brain cancer at 21, I understand the value of scientific progress without needing a marketing department to explain it. Advances in oncology have expanded treatment options, improved outcomes for many cancers, and changed what physicians can offer people confronting diagnoses that once carried far fewer possibilities. ASCO’s contribution to professional education and the dissemination of clinical research deserves serious respect, even from someone who has spent a considerable portion of his adult life criticizing aspects of its institutional culture.
But scientific progress and patient access operate under different economic rules. A physician can identify the most appropriate treatment while an insurer requires additional documentation before authorizing it. A pharmaceutical company can develop a therapy with meaningful clinical benefits while its price places substantial financial pressure on patients and the organizations paying for their care. A hospital can provide sophisticated medical services while leaving patients to navigate confusing bills, coverage restrictions, and administrative demands that consume time and resources during an already difficult period.
These outcomes reflect decisions that often make sense to the organizations making them. Insurers manage utilization and financial exposure. Hospitals negotiate reimbursement to sustain operations. Manufacturers pursue returns on research investments. Physicians attempt to deliver appropriate care while maintaining financially viable practices. Each participant responds to a different combination of incentives, obligations, and constraints, while patients experience the cumulative consequences.
ASCO understands many of these tensions. The presentation I attended identified priorities that included prior authorization, step therapy, drug pricing, pharmacy benefit managers, Medicare physician payment, drug shortages, telemedicine, and cancer research funding. It also described state advocacy efforts, including support for Iowa’s HF 2635, a prior authorization reform measure that Governor Kim Reynolds signed into law. The presentation identified January 1, 2027, as its effective date. Such legislation can create more predictable administrative processes and clearer requirements, although its practical benefits depend on implementation, enforcement, and the patients whose coverage falls within its provisions.
The presentation also described ASCO’s political action committee, reporting support for 71 candidates and more than $203,000 in political contributions. The slide did not specify the reporting period, which matters when interpreting those figures. Alongside the PAC, ASCO maintains an advocacy network that helps participants follow legislation, communicate with elected officials, and respond to policy developments at the state and federal levels.
Taken together, these activities demonstrate something more important than any individual contribution or legislative victory. ASCO has developed mechanisms for identifying common interests, translating those interests into policy objectives, building relationships with lawmakers, and maintaining engagement over time. It understands that clinical expertise, however compelling, does not automatically produce favorable legislation or regulation. Organized political participation requires resources, coordination, persistence, and a clear understanding of whose interests the organization represents.
What Professional Advocacy Actually Does
Professional associations exist because individual practitioners generally lack the time, resources, and institutional access to advance shared interests independently. An oncologist managing a busy practice cannot reasonably monitor every relevant legislative proposal, maintain relationships with congressional offices, analyze reimbursement changes, and coordinate advocacy across multiple jurisdictions. A national professional society can distribute those costs across its membership and develop the specialized expertise necessary to participate effectively in public policy.
This arrangement reflects a rational response to the economics of collective action. Members contribute resources and professional credibility, while the association provides research, representation, coordination, and sustained engagement. The benefits extend beyond individual physicians when successful advocacy improves access to treatment, protects clinical judgment, or reduces unnecessary administrative work. A physician who spends less time contesting inappropriate insurance requirements may have more time available for patient care, while a financially stable oncology practice may offer patients greater continuity and access.
ASCO operates within a broader political environment in which insurers, hospitals, pharmaceutical manufacturers, employers, and other organized interests pursue policies that affect their financial and operational circumstances. Their interests frequently overlap, but they also diverge. An insurer may favor utilization controls that a physician considers burdensome. A manufacturer may support reimbursement arrangements that preserve access to its products while a payer seeks to manage spending. Hospitals may advocate for payment policies that sustain their operations, even when those policies create affordability concerns for patients or purchasers.
Political action committees represent 1 mechanism through which organizations and their eligible supporters participate in this environment. Campaign contributions operate within legal limits and disclosure requirements, and contributions alone cannot establish that a particular lawmaker changed a position or vote. Political influence also depends on expertise, relationships, constituent engagement, credibility, and the ability to remain involved as policies develop. ASCO’s presentation illustrated several components of that broader infrastructure.
I respect the organization’s investment in these activities because professional representation serves a legitimate purpose. Oncologists need workable reimbursement structures, reasonable administrative requirements, reliable access to therapies, and public policies that allow them to exercise appropriate clinical judgment. Patients often benefit when professional advocacy succeeds, particularly when it reduces delays, protects continuity of care, or helps sustain access to oncology services.
The distinction concerns whose interests ultimately determine the agenda. Physicians and patients can support the same reform for different reasons, and those differences affect how they define success. An oncologist may experience prior authorization as an interference with clinical judgment and practice efficiency, while a patient experiences it as uncertainty about whether treatment will begin on time, whether insurance will pay, and how another delay might affect an already precarious situation.
Similarly, physicians may prioritize Medicare payment stability because reimbursement affects whether practices can remain financially viable. Patients may prioritize affordable care, predictable coverage, access to particular clinicians, or protection from unexpected financial obligations. These objectives can reinforce one another, but they require different measures of success and sometimes involve competing economic considerations.
A professional society can advocate effectively for patients while remaining accountable primarily to the profession it represents. That distinction should inform how we evaluate institutional claims about patient partnership. Whose priorities determine the legislative agenda? Who participates when organizations negotiate policy positions? How does the institution resolve disagreements between professional interests and patient preferences? What evidence demonstrates that patient participation changes decisions rather than merely contributing useful perspectives?
These questions concern governance and accountability, not the sincerity of the people working inside these organizations. Professional advocacy can produce meaningful patient benefits without constituting independent patient representation. Understanding that difference helps clarify what ASCO can reasonably accomplish and what patients must develop for themselves.
The Difference Between Being Heard and Having Influence
My relationship with ASCO has changed considerably since those early Stupid Cancer years. I’ve attended as a nonprofit executive, patient advocate, media professional, podcaster, and commentator. I’ve built relationships with extraordinary physicians, researchers, advocates, and industry professionals, and I’ve watched the organization make genuine improvements in how it accommodates and engages patient communities.
I’ve also spent a considerable amount of time criticizing the limitations of that engagement, particularly when institutions celebrate the presence of patients without clearly demonstrating how their participation affects consequential decisions. ASCO has plenty of company in this regard. The American Society of Hematology, American Association for Cancer Research, and European Society for Medical Oncology each operate within professional and scientific environments that increasingly recognize the value of patient involvement. Their missions and approaches differ, but the broader oncology establishment continues to confront questions about how patient participation translates into influence.
Patient engagement can improve clinical research, expose problems that professionals overlook, strengthen communication, and help organizations understand the practical burdens of treatment. Advocates contribute knowledge about living with disease, navigating care, and managing consequences that clinical studies and administrative data may capture incompletely. Their involvement can improve decisions when institutions establish processes that allow those perspectives to influence priorities and outcomes.
The challenge arises when participation becomes an institutional achievement in itself. An organization can count advisory meetings, conference panels, patient representatives, and sponsored activities without establishing whether those activities changed anything important. Patients may receive opportunities to tell their stories while remaining largely absent from the decisions that determine research priorities, resource allocation, legislative positions, and institutional accountability.
This distinction becomes particularly important when patient advocates depend on access to the organizations they may need to challenge. Invitations, speaking opportunities, research collaborations, and industry support can create meaningful benefits, but they can also complicate independence. Organizations should establish clear expectations for patient participation, disclose relevant financial relationships, and demonstrate how they incorporate patient perspectives into decisions. Advocates, meanwhile, need sufficient independence to disagree without treating institutional approval as a prerequisite for legitimacy.
The pharmaceutical industry’s interest in patient engagement deserves the same scrutiny. Companies can learn valuable information from patients about treatment burdens, trial participation, communication, and unmet needs. Those insights can improve products and research. They can also support commercial strategies and strengthen public credibility. Evaluating these relationships requires attention to their structure, transparency, and outcomes rather than assuming either pure altruism or improper motivation.
After 20 years, I appreciate the improvements ASCO has made in recognizing patient advocates. I also believe the next stage of institutional maturity requires clearer evidence that patient involvement influences decisions beyond the spaces and programs specifically designed for advocates.
The Medicine Can Be Right While Everything Around It Goes Wrong
These concerns sit at the center of my book, We the Patients: Understanding, Navigating, and Surviving America’s Healthcare Nightmare, and the academic curriculum I’ve developed around it. American healthcare combines clinical expertise with insurance contracts, reimbursement systems, administrative requirements, regulatory structures, and financial incentives that influence whether patients can obtain medically appropriate care.
The system frequently rewards decisions that make economic sense for individual organizations while imposing cumulative costs on patients and other participants. An insurer may require authorization to discourage unnecessary spending. A physician may recommend treatment based on clinical evidence. A hospital may negotiate payment rates that support its operations. A pharmaceutical manufacturer may establish prices that reflect its commercial objectives. The patient must navigate the consequences of these decisions simultaneously, often without the information, expertise, or negotiating leverage available to the institutions involved.
Administrative complexity imposes costs that extend beyond patient frustration. Clinicians and their staff spend time responding to coverage requirements, appealing denials, and reconciling conflicting administrative demands. Patients may miss work, postpone appointments, arrange additional transportation, or experience interruptions in treatment. Employers and public programs may absorb costs when administrative barriers contribute to avoidable complications or inefficient care.
These consequences create opportunities for reforms that improve patient protection and economic efficiency together. The challenge involves distinguishing administrative requirements that deliver measurable value from those that merely transfer costs, delays, or financial risk to participants with less negotiating power. Appropriate utilization management can serve legitimate purposes, but its benefits should justify the burdens it imposes, particularly when delays affect time sensitive treatment.
Medical education has an important role in preparing clinicians to recognize these dynamics. Future physicians need to understand how insurance design, reimbursement policy, financial toxicity, and administrative burdens influence whether patients can follow appropriate treatment plans. They also need to recognize that patients possess expertise about the practical consequences of care that clinical evidence alone cannot fully describe.
ASCO’s educational activities already address important aspects of the economic environment surrounding oncology. The presentation included professional education offerings related to practice finances, revenue cycle management, pharmacy operations, negotiation, and organizational leadership. These subjects matter because physicians practice within institutions whose financial and administrative structures influence care delivery.
The opportunity lies in connecting that institutional understanding more directly to patient experience. Medical expertise helps clinicians determine what treatment should accomplish. Economic and administrative literacy helps them recognize whether patients can actually obtain that treatment, sustain it, and manage its consequences. Patient participation becomes more meaningful when clinicians and institutions treat those practical realities as essential components of care rather than secondary concerns.
Patients Need Their Own Political Infrastructure
The presentation ultimately changed how I think about my longstanding argument with ASCO. For years, I’ve wanted oncology’s most influential institutions to give patients a more consequential role in decisions that affect their lives. I continue to believe that professional societies should make patient participation meaningful, transparent, and accountable. But I now recognize more clearly the limitations of expecting organizations with distinct constituencies to provide independent political representation for patients.
ASCO has developed political infrastructure because its members share identifiable professional interests and recognize the value of collective action. Its advocacy network, policy priorities, legislative relationships, and political participation allow the organization to pursue objectives that individual physicians would struggle to advance independently. Those mechanisms reflect a sustained institutional investment in representation.
Patients need comparable capacity to identify their own priorities, develop credible policy positions, participate in legislative debates, and evaluate whether reforms improve their lives. Building that capacity requires more than collecting compelling stories or inviting patients to support agendas that other organizations have already established. It requires reliable information about patient experiences, independent governance, methods for identifying shared interests, and sustained engagement with policymakers.
Patients also constitute a diverse population with different diagnoses, financial circumstances, insurance arrangements, and treatment experiences. Their priorities will not always align, and an independent patient constituency must develop legitimate processes for managing those differences. The objective should involve creating mechanisms through which patients can identify common interests and participate in decisions that affect them, while acknowledging disagreement where it exists.
The economic case for stronger patient representation deserves particular attention. Patients absorb costs that healthcare organizations often measure inconsistently, including administrative labor, lost wages, transportation expenses, treatment delays, and the financial consequences of interrupted care. Employers absorb productivity losses and benefit expenses. Clinicians absorb administrative demands that reduce the time available for medical care. Public programs may incur additional spending when avoidable complications or delayed interventions increase the need for services.
Independent patient representation could help policymakers identify where existing arrangements transfer costs instead of eliminating them. It could also improve the quality of policy debates by introducing evidence about consequences that traditional financial and clinical measures may overlook. Such representation would complement professional advocacy where interests align while preserving the ability to challenge policies that protect institutional interests at patients’ expense.
This approach offers professional organizations an opportunity to develop more credible relationships with patient constituencies. ASCO can continue representing oncologists while independent patient organizations articulate priorities that reflect the experiences and interests of the people receiving care. Collaboration would remain valuable, but it would rest on clearer boundaries of representation and accountability.
A Love Letter, With Conditions
I have spent 20 years giving ASCO a hard time because I care about cancer medicine and the people who depend on it. I’ve watched scientific progress transform treatment possibilities, physicians fight administrative barriers to deliver appropriate care, and patient advocates build extraordinary communities with limited resources and comparatively little institutional leverage.
I’ve also watched ASCO improve its relationship with patient advocates. The picnic tables disappeared, the kiosks arrived, and the Patient Advocacy Lounge became a larger, more useful, and more prominent part of the Annual Meeting. Those changes deserve recognition, even as the institution continues to face legitimate questions about how patient engagement translates into influence.
What impressed me most about the recent advocacy presentation, however, had little to do with conference amenities. ASCO demonstrated how seriously it takes the political and economic conditions surrounding cancer care. It understands that research funding, reimbursement policy, insurance requirements, and legislation influence what happens in examination rooms. It invests resources in advancing its priorities because professional expertise alone cannot guarantee favorable policy outcomes.
I would like to see patient engagement mature with that same seriousness. Professional societies can make their decision processes more transparent, establish clearer expectations for patient participation, and demonstrate how patient perspectives affect institutional priorities. Patients, meanwhile, need independent structures that allow them to organize, advocate, and negotiate without depending entirely on invitations from organizations with different obligations.
These objectives can coexist. Professional associations have legitimate interests to protect, and patients have equally legitimate reasons to seek independent representation. The interests of physicians, patients, insurers, manufacturers, and healthcare institutions will sometimes align and sometimes diverge. A more accountable system would recognize those differences openly and establish mechanisms for addressing them.
After 20 years, I have enough institutional memory to appreciate genuine progress and enough experience to recognize unfinished work. ASCO has taught me a great deal about cancer medicine, professional advocacy, and the practical mechanics of political influence. Perhaps its most useful lesson is that organized constituencies invest in the infrastructure necessary to advance their interests, rather than relying entirely on the goodwill of institutions that represent someone else.
Patients deserve the opportunity to develop that same capacity. ASCO deserves credit for demonstrating why it matters, and I hope the next chapter of our complicated relationship includes a more consequential understanding of what patient partnership can accomplish.
With love, from your favorite pain in the ass cancer advocate.
Here’s to #ASCO2027.
