We have just completed a three (3) month long horrifically painful and gruelling American medical odyssey that confirms to our family once and for all that the current medical model is heartless, broken, and beyond repair. Universal insurance for all American is by far the most humane and cost effect options available. Those that clamour for the right to retain the “freedom to choose their own medical provider” are at best naïve or at worst delusion, selfish, and, short sighted. Inevitably these “free choice” folks in the long run will be denied at an acute and critical time in their medical needs an important, perhaps even life altering/saving medical procedure courtesy of the omnipotent, capricious, and often cruel insurance industry that currently calls all of the shots in America’s health care model. It is not the patient or doctors that runs the medical industry but the dictatorial insurance carriers. Every American knows that fact, yet we pretend that we have real choice. Let me tell you about our latest medical horror drama we recently survived in our current American “free choice” medical market.
My son Aaron, age 32, suffers from an acute and progressive form of Multiple Sclerosis (MS). Aaron has courageously been battling MS for 16 years. An acute and catastrophic illness like MS can and will gradually weaken and destroy much of the central nervous system (brain included) if left unabated without medical intervention. In Aaron’s case, this massive weakening and destruction of nerve tissue is excruciatingly painful. My son has been suffering in pain for 16 years. The mental and psychological “war” that an MS sufferer goes through is a constant 24/7 ordeal. Suicide is high for MS sufferers.
When Aaron first became afflicted with MS as a young strapping teenager, our family went into psychological freefall. Fear and panic governed our lives for the first few years. We could do nothing for our son as before our eyes he deteriorated into a bedridden kid that had trouble just get up and using the restroom. I could see terror in my son’s eyes and I could do nothing. My family sought out therapy and I remember as though it was yesterday a psychologist admonishing us that Aaron’s “devastating and chronic illness can and will destroy a family if the family does not get proper therapy and medical attention. The psychologist concluded by reminding us that MS would irrevocably change our lives. The changes over the past 16 years have been dramatic and made us more resilient and have bonded us into a tighter family team.
With a Si Se Puede attitude and never take no for an answer attitude in the past 16 years our family has been able to secure and assemble the best medical team of world class neurological, pain and psychological practitioners in California, it has never been easy! In the current medical model every medical procedure, protocol and intervention has been met with resistance and initial rejection by our insurance carriers. I promised Aaron, early on, that I would never take a no as final medical/ insurance decision that was detrimental to my son medical needs. It is with this firm unwavering resolve that we take on the formidable insurance industry every time we get a rejection for a medical protocol.
Aaron currently has three insurance options, Aetna a private insurance carrier; and Medical and Medicaid. My son medical cost have been astronomical in the past 16 years. Without the benefit of one or all three insurance options we would have been bankrupt as a family many times over. In the past few years world renowned Neurologist at UCLA and UCSF have prescribed Ocrevus, a newly developed costly “designer” MS medications that have dramatically blunted and slowed Aaron’s MS relapses and attacks.
The Ocrevius infusion protocol is administered every six (6) months at an infusion center or hospital that must be initially approved by the insurance carriers. This process of obtain initial Aetna insurance approval is always nerve wrecking. In November, 2019 Aaron was due for his 6 month Ocrevus infusion. We received a call from the local hospital infusion center that they had not received Aetna approval. Aaron’s Ocrevus scheduled infusion was cancelled.
The medical procedure cancellations for Aaron are always devastating, because we never know when or why they are being denied approved. This latest denial was not even communicated to us directly but rather to the infusion center and the doctor of record. This is how I found out that Aaron had been denied the infusion protocol. In the ensuing two (2) months I would make more than 50 telephone calls to Aetna (the hospital infusion center, the doctors involved, Medical and Medicaid) attempting to ascertain the nature of the denial and what other medical options I could pursue to get the urgent medical treatment that Aaron required. As Aetna was our primary insurance, we were informed that Aaron’s Medicaid and Medical could not be utilized to cover the medical procedure that Aetna was denying. A classic medical Catch-22.
By the end of December, 2019 Aaron was becoming symptomatic and privately the family feared that he was plunging into a full blown MS attack. Aaron remained strong and resilient despite his diminished health. We continued unsuccessfully to battle Aetna to secure the approval of the infusion that Aaron by this time desperately required. Aetna was non-responsive and denied our infusion request not once but twice.
In the early days of January, 2020 we made the decision to request medical assistance from MS/Neurological department at UCSF. Our UCSF medical team understood Aaron’s medical emergency and acted quickly. In a couple of week they were able to navigate the insurance quagmire and received authorization from Medicaid to provide Aaron with the Ocrevus infusion. This new twist would require Aaron and me to travel to San Francisco, adding hundreds of dollars of costs to our very limited family budget. And of course tremendously taxing Aaron’s mental and physical weakened condition.
In the past two week we caught an unexpected miracle. Apparently the original infusion center staff continued to work hard behind the scenes to secure an approval from Aetna to provide the Ocrevus infusion for Aaron to be provide at our home. And on Thursday, January 9, 2020 a registered nurse came to our home, and administered the Ocrevus infusion in the loving comfort of our home. We are eternally grateful to all the professional and medical folks that work to make the Ocrevus infusion happen for Aaron. But we hardened again, by this gruelling battle with the insurance industry, in our beliefs that universal medical care for every American is the humane, best, easiest and most cost effective medical option available. Not only should universal medical care be available to everyone it can be done more professionally, compassionately, in a far more cost effective manner if the perverse, capricious and immoral uncheck profit margin are eliminated. By the way we never found out why Aetna denied Aarons medical procedure on multiple occasions, and finally approved relented and approved the infusion.
Armando Vazquez, M.Ed. is Executive Director of Acuna Art Gallery/Café on A, Executive Director for The KEYS Leadership Academy and Chairman of the Oxnard Multicultural Mental Health/coalition
The views and opinions expressed in this commentary are those of the author and do not necessarily reflect the official position of Citizens Journal.
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Another chapter from the communist manifesto covered up by nondescript adjectives that have no basis in fact. Why is he here instead of someplace like Cuba, Russia, or China. We could use his space for some fresh breathable air.