Why Healthcare Is FAILING You: A Doctor Roundtable on Chronic Illness
Lost in a healthcare system that wasn't built for your chronic illness? If you're grappling with the complexities of Sjogren's, dysautonomia, POTS, or MCAS, you're not alone. The truth is, our modern healthcare system often falls short when it comes to providing comprehensive, compassionate care for complex chronic illnesses.
In a powerful roundtable discussion from the recent Virtual Sjogren's Summit, I brought together a "dream team" of innovative physicians to pull back the curtain on these challenges and explore how we can build a better future for healthcare. Join me, Dr. Kara Wada (Immunology), Dr. Bonnie Feldman (Rheumatology/Patient Advocacy), Dr. Brittany Panico (Rheumatology), and Dr. Zachary Spiritos (Neurogastroenterology) as we have a candid conversation about the realities of chronic illness care.
The 15-Minute Model: A Flawed Foundation for Complex Care
We all entered medicine to make a difference, to connect and solve health puzzles. But the relentless pressure of a 15-minute, insurance-based visit often chips away at that spark. As Dr. Zach Spiritos powerfully articulated, healthcare was largely built on the "germ theory" for infectious diseases – find the bug, treat the bug. Then it evolved to definitive protocols for heart attacks and strokes. But for chronic, complex conditions with no single diagnostic clue or "one thing to treat," this model fails.
"Time was the biggest issue for me," Dr. Spiritos shared, reflecting on his decision to leave academia to build EverBetter Medicine, a telehealth clinic for complex GI and autonomic conditions. "I was always behind. Everybody was mad at me in clinic 'cause I try to give everybody the time that they need to tell their narrative." He emphasizes the need for 60-90 minute visits and weekly check-ins – something insurance models rarely reimburse.
Personal Journeys to Patient-Centered Care
Each of us on the panel shared our own "aha" moments that led us to reinvent how we practice:
Dr. Bonnie Feldman, a former dentist and Wall Street analyst turned autoimmune patient advocate, founded Rheumission, a virtual integrative rheumatology clinic. Her mission: to prove that a multidisciplinary, high-touch, systems-based approach could improve patient outcomes and reduce costs – a vision driven by her personal struggle with fibromyalgia and multiple autoimmune conditions.
Dr. Brittany Panico, an independent rheumatologist, founded Summit Rheumatology to devote more time to partnering with patients. She's integrated Autonomic Nervous System (ANS) testing to validate invisible symptoms and guide truly targeted therapy, recognizing that "little 'i' inflammation" (like subtle dysautonomia) is as real as "big 'I' inflammation" (like a gout attack).
Dr. Zachary Spiritos highlighted the disconnect between a patient's symptoms (e.g., anxiety around eating) and the limited diagnostic tools available. He needed a model that allowed continuous communication and holistic planning for conditions like MCAS, POTS, and hypermobility – which lack FDA-approved algorithms and require constant tweaking.
Dr. Kara Wada (myself), a quadruple board-certified immunologist and Sjogren's patient, deeply understands the frustration of diagnosis and the need for a collaborative team. My own experience with Sjogren's and dysautonomia fueled my shift to create the Immune Confident Institute.
The Power of a Multidisciplinary Care Team (Patient as MVP)
The consensus was clear: "The days of the physician as the sole authority are over." Patients come with vast information (and misinformation), and involving them in decision-making builds trust. This collaborative model extends to our colleagues. Dr. Bonnie's Rheumission clinic had an integrative rheumatologist, lifestyle medicine physician, nutritionist, and chronic pain psychologist – an "expensive dream team," but one that delivered "outstanding" clinical results and deeply satisfied patients.
Dr. Spiritos's EverBetter Medicine team includes exercise physiologists and registered dietitians specializing in dysautonomia and complex GI conditions. He's also eager to add pelvic floor physical therapists, acknowledging the critical, often-overlooked role of pelvic health, especially for women with hypermobility and various GI/urinary issues. Dr. Panico emphasizes building local networks of like-minded specialists who "speak the same language" for complex conditions, ensuring seamless referrals.
We acknowledged the historical silos in medicine – how neurology and immunology, for instance, were separate during training, despite profound cross-talk between these systems (beyond just MS!). Breaking down these silos is essential.
Payment, Reimbursement, and the Hard Truths
The financial model of healthcare is a huge barrier. Dr. Bonnie explained that traditional fee-for-service models often don't support the extensive time needed for integrative care – Rheumission actually lost money trying to provide comprehensive team-based care, leading to its closure.
Dr. Spiritos, running a cash-based practice, echoed the difficulty: "Insurance won't reimburse for that. Those ongoing communications, they just, it won't, right? And there's no way to bill for that." He expressed frustration at being called a "crook" for not taking insurance, while simultaneously struggling to offer affordable, high-quality care to patients who are often financially strained by their chronic illnesses.
Dr. Panico highlighted that the system devalues "intellectual specialties" (like diagnosis and complex care planning) in favor of "procedural specialties" (like endoscopies, which are highly reimbursed). "We devalue preventative care in favor of reacting to disastrous outcomes," she stated. We are often at the mercy of an economic system not built to support the kind of comprehensive, preventative, and trauma-informed care that complex chronic illness demands.
Actionable Advice for Patients: Become the CEO of Your Health
Despite systemic challenges, the panel offered powerful advice for patients feeling lost:
Become the CEO of Your Own Health: As Dr. Bonnie urged, "Fire the doctors that aren't listening, that are gaslighting you... and find the practitioners that you need."
Find Your Support Network: Dr. Spiritos emphasized that social media has created incredible support groups. "Go out there, talk to people, go on social media, support groups, find your provider that listens to you, will take it seriously."
Develop Your Language: Dr. Panico advised putting in the time to develop clear language to communicate your symptoms. "When you can have a word or a phrase that connects something, that then triggers us to ask other questions." Practice describing your symptoms with a "story behind it," rather than just checking boxes.
Be Prepared: Organize your symptoms and questions. Don't be apologetic about your pain or experiences. "We want to hear about everything," said Dr. Spiritos.
Recognize the Connection: As Dr. Feldman concluded, "The pain in your head is connected to the pain in your foot... They are all connected, they all work together. And just because specialists are still divided up doesn't mean that they don't all exist."
This roundtable was more than a critique; it was a forward-thinking conversation about building a better future for healthcare—one that values time, curiosity, and genuine partnership.
