A rest interval at the gym tonight, evolved into a moment of gratitude and frustration. The allure of new notifications on Facebook was a needed distraction from the lactic acid built up in my calves. Several smirks and head nods later my right index finger reflexively moved to close the app. And, then a news article from Jezebel.com caught my eye.
Carrie Ann Lucas, a widely respected attorney and advocate for the disability community, died on Sunday. Carrie was a member of the disability community – she was diagnosed with a type of muscular dystrophy as a teen. In January 2018, Carrie caught a cold and the cold developed into an infection. Staff writer, Esther Wang, further explained that an inhalable antibiotic was the optimal treatment for Carrie’s infection. The specific inhalable antibiotic would accommodate the various medical conditions inherent to people living with muscular dystrophy.
United Healthcare denied the antibiotic. Carrie was faced with a decision many people with disabilities grapple with far too frequently. Do I take a medication that is on the insurance’s formulary list, or do I hedge my bets and file an appeal? Carrie was a knowledgeable woman. One may presume her predicament was quite precarious. She opted to take the secondary antibiotic and suffered a severe reaction.
Between the surgeries, admissions into intensive care, and other stays in the hospital treating subsequent adverse events following the reaction, Carrie continued to thrive and fight for the rights of people with disabilities. Carrie boldly accepted the odds that she would die young. However, she was adamant that the world knew United Healthcare’s refusal to approve an antibiotic costing $2,000 resulted in hospital/medical bills approaching $1,000,000 and her eventual death. Furthermore, Carrie valiantly fought these types of injustices and wrote about the dangers lurking in the shadows of the monetization of the healthcare industry for people with chronic or disabling conditions. Carrie’s death should serve as a prominent reminder that this could happen to anyone.
Repositioning my emotion wrecked body on the Hamstring Curl Machine, I put forth maximum effort on the final sets of the evening’s requisite workout. Each lift brought a recollection of being caught in the proverbial crosshairs of an insurance company making an arbitrary decision about my needs as a person with a disability. Experiencing an allergic reaction following a trip to a local zoo and being given few palatable choices to attempt the restoration of residual vision of my right eye as a teen; fracturing my ankles and not being properly treated due to having Medicaid in my teens and early twenties; battling with my current insurance company for coverage of prescribed medications to treat a disorder related to blindness; and most recently, having the insurance deny coverage of the aforementioned medication after three years of providing the benefit, only to approve another procedure following 2.75 years of appeals careened through my mind’s eye.
My parents were educated in the segregated South. Daddy briefly attended college and my mom graduated from high school. We were considered a working class family. You did not question a doctor’s recommendation nor the insurance’s refusal to provide a benefit. I mistakenly thought attaining advanced education and earning a comfortable salary would shield me from struggles meeting personal healthcare needs.
The terms medically necessary and formulary lists are etched into my brain. Four years ago, I was unprepared to discover the promotions and raises I diligently hustled to earn vaulted my annual income just beyond the limits to continue qualifying for Medicaid and then Medicare/Working Disabled Insurance. Honestly, the thought never entered my mind that I would need a designer medication from a special pharmacy costing hundreds if not thousands of dollars each month to manage a chronic condition and how the termination of public healthcare services would impact the ability to attain a medication which is vital to everyday life.
I am grateful that my treating physician was tireless in finding a cocktail of preferred drugs to produce similar results of the designer medication no longer covered by my insurance carrier. Failure to access the drug will not cause my life to be shortened; however, for Carrie and too many others this is the case. I do not have the answers to repair our broken healthcare system. One thing is for sure, an overhaul is long overdue.
https://jezebel.com/disability-rights-advocate-carrie-ann-lucas-dies-after-1832933366
https://www.coloradoindependent.com/2019/02/28/remembering-disability-rights-carrie-ann-lucas/
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