Why Can’t Patients Get Care in a Broken System?

Patients with chronic, complex illnesses often struggle to find the medical care they desperately need. The answer to why this happens isn’t straightforward; it’s a complicated mix of systemic barriers in the U.S. healthcare system. For those suffering from chronic complex conditions, care is failing on both sides of the patient–doctor relationship. Patients can’t find doctors who will take their symptoms seriously or treat them effectively, and physicians who want to provide that care often find themselves unable to do so. Why is that? What is preventing patients from getting the care they need?

Well-Documented Barriers to Care

A growing body of research confirms that patients with complex chronic illnesses face numerous hurdles in obtaining proper care. Commonly reported barriers include:

• Misdiagnosis or Diagnostic Delays: Patients are frequently misdiagnosed, or it takes years to get a correct diagnosis. This delay means effective treatment is postponed or never started.  In one study, around 77% of POTS patients are initially misdiagnosed with another disorder usually psychiatric.
• Limited Access to Knowledgeable Providers: Few healthcare providers truly understand these complex conditions. Specialists for rare or multifaceted illnesses are in short supply, and primary care doctors may not have the training to recognize and manage them.  In another study, about 67% of U.S. POTS patients reported that at least one doctor told them they had never heard of POTS. 
• Insufficient Time with Doctors: In today’s healthcare settings, appointments are often limited to 15 minutes or less. That’s not nearly enough time for patients with complicated, multi-system issues to be heard and thoroughly evaluated, leading to important details being missed.  
• Insurance Coverage Denials: Even when a knowledgeable doctor is found, insurance companies often deny coverage for necessary tests or treatments, labeling them as “experimental” or not “medically necessary.” Patients are left either fighting denials or paying huge sums out-of-pocket.
• High Total Cost of Care: Managing chronic illnesses is extremely expensive. Between specialist visits, medications, therapies, and possible hospitalizations, the costs add up. Many families are financially drained by seeking care, and some treatments are simply out of reach due to cost.

Beyond these logistical hurdles, patients also encounter an additional barrier: dismissal and disbelief. Too often, when doctors can’t easily identify what’s wrong, they fall back on saying nothing is physically wrong at all. Physicians sometimes refuse to admit they might not have all the answers. This denial can lead to patients being told “it’s all in your head,” effectively being marginalized or labeled as psychiatric cases rather than getting to the root of their illness. Such experiences are devastating for patients and families who know something is truly wrong.

Even within the medical community, there is growing recognition of this problem. Dr. Robert Pearl, former CEO of Kaiser Permanente, highlighted in his book Uncaring: How the Culture of Medicine Kills Doctors and Patients that a “culture of denial” pervades U.S. medicine. In this culture, doctors are trained to never admit doubt or wrongdoing, and this mindset has become institutionalized. It means that rather than acknowledging gaps in knowledge or mistakes in diagnosis, the system often denies them – and patients pay the price. 

The Dark Side: Systemic Factors Perpetuating Poor Care

There is a less-discussed dark side of American healthcare that perpetuates poor care for chronic illness patients: the misaligned incentives of our healthcare system. In many medical settings, physicians are incentivized by their employers or the industry not to provide the kind of thorough, evidence-based care these patients need. Spending extra time with a complex patient, ordering specialized tests, coordinating multidisciplinary treatment – these things are discouraged in a profit-driven environment. Under pressure to see high volumes of patients or perform lucrative procedures, doctors may find that truly comprehensive care for complex conditions is practically punished. This breakdown of support for doing the right thing has shattered the therapeutic alliance – the trusting partnership between patient and doctor. Physicians might want to help their patients, but the system around them makes it extraordinarily difficult if that help isn’t profitable.

A stark example of this systemic dysfunction is the recent fate of the Metrodora Institute in Salt Lake City, Utah. This clinic was founded with a bold vision: to provide multidisciplinary, state-of-the-art care for people with complex chronic illnesses (such as neuroimmune and autoimmune conditions). Metrodora heroically attempted to break the mold and actually deliver the kind of integrated care that patients have been desperate for. Yet, despite passionate leadership and significant funding, Metrodora ultimately had to close its doors after losing millions of dollars. In essence, even a well-intentioned, well-funded effort could not survive within our broken system. Metrodora’s collapse highlights how dire the situation is: when innovative clinics that try to do right by patients cannot financially sustain themselves, it’s a glaring sign of systemic failure.

Increasingly, corporate interests are overriding medical judgment. Private equity firms and insurance companies now play an outsized role in deciding how care is delivered. They often make or influence medical decisions based on what’s best for the bottom line, not what’s best for the patient. For example, insurance companies may refuse to cover lengthy hospital stays or novel therapies simply because they cut into profits. Private equity ownership of physician groups can lead to cost-cutting mandates, like seeing more patients per hour or referring fewer cases to specialists. This means doctors who could provide appropriate care are constrained or outright prevented from doing so by financial gatekeepers. Some physicians who insist on putting patients first – ordering thorough workups, pursuing rare diagnoses, or spending ample time in consultation – find themselves pushed out of practices or academic centers because their approach is deemed “inefficient” or not lucrative enough. In short, if what a doctor wants to do for a patient is “bad for business,” the system finds ways to stop it.

Profit Over Prevention: Misplaced Priorities in Healthcare

The culture of U.S. healthcare has long valued high-tech procedures and “heroic” interventions over primary care and prevention. Hospitals and specialists get rewarded for surgeries, scans, and interventions, while front-line care like managing a chronic illness day-to-day is undervalued. For patients with complex chronic conditions, this imbalance is disastrous. They don’t necessarily need another risky procedure or a fancy new drug; often, they need careful long-term management, preventive strategies, and coordinated care among different specialists. But those services are not incentivized. A surgeon is paid far more for a single procedure than a primary care doctor is paid for months of coordinating a patient’s care. Thus, the system pours resources into the “big ticket” items and starves the foundational care that would keep patients stable and out of the hospital.

We see the consequences at the national level. The United States spends around 18% of its GDP on healthcare, by far the highest percentage in the world – yet our health outcomes are among the worst in the developed world . Americans, especially those with chronic illnesses, die younger and suffer more than citizens of countries that spend far less on healthcare . This frustrating paradox (high spending, poor results) is not because Americans get more preventive care – in fact, it’s the opposite. The U.S. chronically underinvests in primary care and public health. But, while more than 35% of health care visits nationally are to primary care physicians, only about 5% of health spending goes toward primary care services, an abysmally low share. Other high-income countries that outperform the U.S. on health outcomes tend to spend much more on primary care – often two to three times as much in proportion (See the Primary Care Scorecard Data Dashboard for national and state spending trends.)  In those countries, there’s a greater emphasis on keeping people healthy through regular primary care visits, early interventions, and preventative measures. Meanwhile, our system pours money into expensive treatments when patients are already very sick, rather than preventing or managing illness earlier. This skewed priority is driven by corporate greed and special interests – there’s profit to be made on surgeries and new medications, whereas public health and primary care are chronically underfunded. As a result, despite the enormous spending, we achieve poorer outcomes because we’ve neglected the basic building blocks of a healthy society.

It’s important to highlight that unnecessary testing and procedures account for nearly 30% of healthcare costs, emphasizing the physician’s responsibility to select diagnostic strategies that offer the highest value. Unfortunately, even though diagnostic tests contribute to fewer than 10% of final diagnoses, they often become the primary focus for healthcare providers. A normal test result frequently leads to the medical conclusion that ‘nothing is wrong,’ instead of prompting deeper exploration through patient history— which alone can yield a diagnosis up to 75% of the time, according to studies by the Institute of Medicine —with physical examinations contributing an additional 10% to 15% (See Best Care at Lower Cost)  Conducting a thorough patient history, however, requires more time than physicians typically have available. This has led to an unfortunate trend away from clinical diagnosis—where taking the time to listen carefully to the patient is replaced by reliance on diagnostic tests as the primary decision-maker in patient care.  

The Human Cost: Patients and Families Left Behind

What does all this mean for patients and families living with chronic complex illnesses? It means being trapped in a vicious cycle. The rare specialists or clinics that do understand these diseases often don’t take insurance because insurance payments are too low or too much of a hassle for the extensive care they provide, OR the wait time for an appointment is beyond a year or more. If doctors move to concierge or cash-only practices to have the freedom and time to treat patients properly, it creates an impossible situation for most patients: if you cannot afford to pay out-of-pocket, you are simply excluded from care. Imagine being desperately ill, unable to work, having spent your savings trying to find answers, and then being told the one doctor who might help you doesn’t take your insurance. This is the reality right now for countless patients. Many families facing these illnesses have already been financially devastated by years of medical bills and reduced income due to disability. They often end up on public assistance or Medicaid, which many of the specialized clinics won’t accept. In other words, the people who need the most care are often the ones shut out of the system because of how care is paid for.

The emotional and physical toll of being left without access to proper medical care is immense. Patients endure worsening symptoms and complications that might have been prevented with timely treatment. Families watch their loved ones suffer, feeling helpless and betrayed by a system that seems not to care. The U.S. healthcare system is truly broken when it comes to chronic complex illness, further driving up the cost of healthcare. We have world-class knowledge and brilliant clinicians, but the current structure too often prevents them from coming together to help the people who need it most.

Yet, in this painful truth lies the fuel for change and opportunity. Patients and families affected by chronic illness are raising their voices, and physician advocacy groups like PCARES.org are working for better solutions.  The first step is awareness: understanding that these problems are systemic, not isolated. The next step is collective action to demand systemic change – from how medical education addresses complex diseases, to how insurers cover (or must cover) long-term and preventive care, to how we reward doctors who spend time solving difficult medical mysteries instead of just doing quick procedures. It will take a cultural shift and policy reforms to realign incentives with what patients really need.

The sobering reality is that lives are on the line. No family should have to watch a loved one deteriorate or go bankrupt because they can’t access knowledgeable care. No dedicated doctor should have to choose between helping their patients and keeping their job. By acknowledging the problem and insisting on change, we can begin to rebuild a system that values care over profit, patients over paperwork, and healing over denying. It’s a long road, but for the millions suffering in the shadows, it’s a fight we must take on with urgency and unwavering resolve. The health and dignity of our loved ones depend on it.

The answer to that question isn’t straight forward and often complicated, as there are multiple barriers to care present in the US Healthcare System.  For those suffering from chronic complex illness the care in the US Healthcare System is broken from both sides 

Why PCARES?

It is abundantly clear that patients and families dealing with chronic complex illnesses need physicians and healthcare providers who are willing to establish a therapeutic alliance and walk this challenging journey with them. 

Patients require doctors who see the bigger picture and help navigate the complicated landscape of specialist care with compassion and sensitivity. This supportive role lies at the heart of primary care. 

Continuity of care and access are essential for best outcomes.  

Effective primary care often relies heavily on cooperative specialists. Unfortunately, with only 61 physicians currently certified in autonomic disorders nationwide, and severely limited access to willing specialist care, the responsibility for managing autonomic disorders, such as dysautonomia and POTS, falls squarely onto primary care providers—but only if they have sufficient knowledge and resources. 

The harsh reality is that primary care in the United States is facing an overwhelming tsunami of challenges, slowly eroding its capacity to deliver adequate care. Primary Care is dying as some have pointed out.  It is increasingly difficult to find primary care MDs or DOs accepting new patients, whether for dysautonomia or other conditions. Time constraints, high patient loads, a rising number of chronic disease cases, excessive administrative burdens, and diminishing physician autonomy combine to create an environment that discourages clinicians from taking on additional patients—not out of negligence, but due to the immense daily pressures they face. This stressful environment often results in clinician burnout, emotional fatigue, and an erosion of empathy.

PCARES aims to address these concerns as a professional organization committed to supporting primary care providers, thereby improving healthcare access and outcomes for pediatric and young adult patients with autonomic disorders, particularly POTS—the most common autonomic condition encountered by pediatric primary care providers. PCARES will equip primary care providers with specialized knowledge, accessible education, and evidence-based best practices tailored specifically to primary care settings. Crucially, PCARES seeks practical, reproducible solutions that ensure the professional viability of providers beyond just cash-pay models. While patient advocacy groups are essential for awareness, meaningful improvement in patient care requires addressing systemic barriers faced by physicians.

Other professional organizations do exist like the American Autonomic Society (AAS) primarily focus on specialists. Patient advocacy groups such as Dysautonomia International (DI) and Dysautonomia Project focus on awareness, specialist-driven research, education, and political advocacy. However, there remains a significant gap and desperate need for primary care-specific education, practical resources, and sustainable practice solutions. PCARES aims to fill this critical gap by empowering primary care providers to manage autonomic disorders and similar complex conditions effectively as frontline care providers. PCARES is built by primary care providers, for primary care providers—with the essential support of specialist colleagues—making meaningful patient healing achievable within their practices.

PCARES focuses on three primary initiatives:

Research:

Our goal is to develop evidence-based research and then guidelines for primary care providers—including pediatricians, internal medicine, and family practice physicians—to better identify and manage young patients with POTS. Our initial research grant, requiring private funding and donations to be successful, aims to validate two practical clinical tools. We have identified eight specific future research projects designed to address critical gaps in pediatric care, where research is often neglected. Pediatric autonomic conditions differ significantly from adult cases, and many clinical questions remain unanswered.

Education:

We recognize a critical gap in knowledge among primary care providers. Often, when a specialist refers patients back to primary care after diagnosing POTS for instance, there’s limited guidance on how to manage ongoing treatment. There is often no follow up specialist care. PCARES.org is developing comprehensive online resources and educational curricula to become a trusted support system for both providers and patients. This need became evident following the establishment of the University of Utah’s “POTS and Beyond” CME conference in 2018 by Drs. Cortez, Cook, and Coleby, which in 2024 shifted its focus towards practical clinical care. While successful, annual conferences alone are insufficient. Additional, more accessible educational resources are essential, requiring ongoing funding to create and sustain these programs. Primary care providers—particularly pediatricians—need tailored programs that go beyond basic recommendations like increased salt and fluid intake. Since POTS is a syndrome rather than a specific disease, understanding its differential diagnosis is crucial for effective patient management.

Practice Solutions:

The biggest challenge remains: How can primary care providers afford to treat a patient population that insurance or institutions refuse to fully cover? Unfortunately, current reimbursement models create negative financial incentives for caring for complex chronic conditions like POTS. This financial barrier explains why autonomic disorder fellowship training, such as the one at the University of Utah, frequently remains unfilled nationally. PCARES is addressing this issue by combining nonprofit funding models with innovative clinic structures, emphasizing comprehensive, transdisciplinary care centered around primary care medical centered home. 

Initially, these population-health-focused clinics will operate as Direct Care practice—where patients pay a monthly fee for comprehensive services—because traditional insurance does not sufficiently support complex chronic care. PCARES will then collaborate with insurance companies, advocating for coverage of Direct Care fees through a collaborative research initiative. This approach aims to demonstrate to insurers that funding a population-health-based medical home outside traditional fee-for-service models can significantly lower overall healthcare costs and enhance quality of life for both patients and providers. Physician-owned practices consistently outperform employed physician models regarding patient outcomes and total healthcare costs. Direct Care models have already demonstrated the potential to reduce healthcare costs by 20-30%, primarily by decreasing unnecessary hospitalizations, emergency room visits, and repetitive specialist-driven diagnostic tests.

We strongly believe insurance and employer based coverage of the Direct Care medical home model will substantially benefit patients and healthcare providers by addressing systemic issues currently hindering effective care. PCARES actively is exploring additional innovative solutions, to be discussed in the future. 

What Can I Do?

Spread awareness through social media.   We have a PCARES Patient Care Conference in September, promote this to your primary care physician and sign up to attend yourself.  Funding is a major need of PCARES for the education conference, research grant, and Clinic Practice Model Pilot.  The UofU fellowship for autonomic disorders remains unfunded. Please donate and encourage others to donate.