Voices Across America

Rare, Complex Patients Cannot Just “Switch Doctors”


State: New York
Congressional District: NY25


Bone / Muscle Disease, Chronic Pain, COVID-19, Ear / Nose / Throat Disease, Endocrine Disease, Gastrointestinal Disease, Genetic Disease, Immune Disease, Liver Disease, Lung Disease, Mental Health, Migraine, Neurological Disease, Rare Disease, Skin Disease, Urological Disease

Issues and Challenges

Ian has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Medical Records Access, Mental Health Access, Rare / Underserved Disease, Transportation, Abuse (Mental, Physical, Elder), Caregiving, Copay Accumulator, Disability, Discrimination (nonmedical), Financial Assistance, Food Insecurity, Gaslighting, Geography, Housing, Invisible Illness, Job Insecurity / Loss, Legal, Lodging, Medical Devices, Medical Discrimination, Oral Parity, Power of Attorney, Premium Payments, Prior Authorization, Social Security Disability, Step-Therapy / Fail First, Suicide / Self-harm, Transparency in Health Care, Underserved Community

My Story

As someone with multiple rare and complex chronic health conditions, navigating the healthcare system can be a daunting task. In the midst of an eight-year battle with Social Security Disability Insurance (SSDI), I faced an unexpected hurdle when my primary care physician (PCP) decided to affiliate his practice with a concierge medicine service owned by Goldman Sachs. This decision, made without prior consultation, left me devastated and uncertain about the future of my healthcare.

For over 20 years, my PCP has been an integral part of my medical journey, providing invaluable support and guidance. However, his decision to join a concierge medicine program meant that I would now have to pay a hefty annual fee of around $2,500 just to continue seeing him. This was not in lieu of insurance costs, copays, or other fees, but in addition to those. This sudden financial burden posed a significant threat to my already precarious financial situation, especially considering my inability to work due to my health conditions.

The pressure to enroll in the particular concierge medicine program my physician was joining was intensified by the tactics employed by a nurse from the company, who used scare tactics and manipulation to coerce us into signing up. She even went as far as to describe a recent car accident my partner and I were in as a “blessing in disguise” for us since it would give us the necessary 500 dollars to put down to immediately secure our spot in the physician's practice. As if that were not enough, that would only be the deposit for one of us to see the doctor. My partner was being left without a primary care physician in the midst of major medical situations of his own with rare and complex diseases. Luckily he was able to find another PCP, but the care is still not on par with what he had and has resulted in derailments of care when he needed it most. When we expressed that this would result in my partner no longer being able to see the doctor, the nurse informed us of how common this was. She explained that they often have couples who will switch on and off where one patient sees the provider one year and the other one sees the provider the next. When pushed about the affordability more, we were given the excuse that the cost of the program really isn't more than a Starbucks coffee a day. Immediately I was horrified that the nurse was suggesting that a person chose between a food item and health care. Regardless of whether she had said an apple or a coffee, it is beyond tone deaf.

Feeling threatened and preyed upon, we pleaded for financial assistance, only to be met with disappointment. Despite this company’s claims of providing free healthcare to those in need “wherever health care is needed” through its charitable foundation, there was no support available for patients like us who couldn't afford the steep fees.

The emotional toll of this experience was profound. I left my PCP's office feeling abandoned and unworthy of receiving medical care simply because I couldn't afford it. I was now "less-than" because the illnesses I deal with on top of the broken Social Security Disability system left me drained financially. The realization that my physician was prioritizing wealth over patient well-being left me feeling disillusioned and hopeless. It was a stark reminder of the disparities in our healthcare system, where access to quality care is often contingent on financial status despite legislative efforts that were meant to close such gaps. Unfortunately these efforts have not yielded enough impactful change for patients like me who find themselves in the ever more common situation I found myself in

This ordeal forced us into further financial hardship, as we had no other viable options for my complex medical needs. The notion of seeking care elsewhere was not feasible, given the specialized nature of my condition and the unique expertise of my PCP. When you have rare diseases you can't simply walk into another PCP as someone healthy can do. We can't just substitute a PA here and there that changes each time we walk into an office or a different doctor each time. We need a singular PCP. They have to be familiar with the conditions in order to treat them appropriately. They have to be on the same level as you as a patient in regards to what you're even dealing with in the first place and have the ability to know who to refer to for the complex issues you face. As a result, we were forced to accumulate more debt in order to maintain continuity of care, and so as not to risk my social security disability due to a change in providers who wouldn't be familiar with my years long medical problems

My story sheds light on the predatory practices of concierge medicine and the devastating impact they can have on vulnerable patients. It underscores the urgent need for systemic reforms that prioritize patient well-being over profit margins. No one should be denied access to essential healthcare simply because they cannot afford to pay exorbitant fees. It is my hope that by sharing my experience, others will be inspired to advocate for change, whether that be mandated financial assistance for patients that includes complete coverage of these fees so patients are not faced to pay them, or an outright ban on concierge medicine altogether (which to me is the only solution unless they start offering significant financial assistance that goes far beyond just a small percentage discount to level the playing field for patients like myself). While there are certainly some benefits such as more time with your physician, and a lesser patient load on the physician to allow them to provide better care overall, it's important not to forget that this is true only for those who can afford to access this specialized form of care. Most doctors who are part of these programs are in them because of the strain and burnout of the medical system we have today where they're seeing an average of around 2,000 patients a year (that means 2,000 plus however many appointments those 2,000 patients need during the year.) We need to transform care at all levels to find an appropriate medium for a system that serves All patients, not just a select few.

My Motivation and Inspiration

I found myself facing the physician I rely on as a rare Disease patient switching his practice to a concierge medicine program that creates a major disparity in patient access to care through exorbitant annual fees on top of insurance costs, deductibles, and copays. Concierge medicine is a major threat to the care of disabled patients, taking an already shattered medical system and disintegrating what little is left holding it together.

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