Story #4 – Chronic Illness and Chronicly Underinsured

Story #4 – Chronic Illness and Chronicly Underinsured

Hi – My name is Leslie A. Zukor, and I am President of the Steering Committee for Whole WA state single-payer initiative. 

I want to tell you a personal story about why single payer is so important to me.  While our life experiences may not be identical, chances are that you have a friend or family member with similar struggles – both health-wise and with the for-profit insurance companies.  When I was a freshman in college, I suffered a breakdown and joined the ranks of the chronically ill.  Only a teenager, I quickly learned that I would never be “normal” again; like any chronic illness, my mental health disabilities had to be managed.  In my case, that meant several different medications, not to mention weekly therapist and psychiatrist visits. 

The sad reality of chronic illness is that I require constant care for the rest of my life.  As a 19-year-old with mental health disabilities, it wasn't long before I discovered that the most daunting hurdle to my health, besides the illnesses themselves, were the for-profit insurance companies – whose preeminent goal was to do whatever they could to cover as little as possible.   

At first, my insurance company wouldn't even pay for my mental healthcare, and my prescriptions were only covered at 50 percent.  This wasn't unique to one policy from one provider; even when mental health parity was passed in Washington State, insurance companies instituted arbitrary limits on the care we could receive, the networks we could use, and the dollar amount covered.  Due to the complex nature of my chronic illnesses, I wasn't about ready to jeopardize my continuity of care, at the behest of any insurance company.

As a result of my chronic underinsurance, I racked up over $40,000 annually in out-of-pocket medical expenses, for the better part of ten years.  While I was fortunate to be born into a wealthy family, with little income of my own, my medical bills started to decimate my parents' savings.

When Obamacare was implemented, I breathed a sigh of relief.  Finally, I would get the care I needed.  Or so I was assured by my insurance company.  That relief was short-lived.  Under Obamacare, Regence sold me a nonexistent policy, and then refused to honor it.  My Dad pleaded, “She'll be in the hospital, if you don't cover her medications.”  The response from Regence – “Well, then let her go to the hospital!”  To even get them to honor the “plan” that they had promised, for merely one year, we had to threaten to get the state insurance commissioner involved.

Thankfully, there were other options.  Since I became disabled before Social Security defined adulthood, I was eligible for Medicare.  After a protracted process, I received my benefits, and quickly found out that government run insurance was far more fair to folks with chronic illness.  While I know it's far from perfect, thanks to Medicare Part D and the extra help available for people with limited income due to disability, my medications were covered at nearly a hundred percent.  And, due to skyrocketing prescription prices, in 2015 alone, that dollar amount was over $47,000.

The only hurdle to my receiving full coverage is that, under our current healthcare system, doctors can refuse to take Medicare, and many do, because the reimbursement rate is so low.  Thus, my out-of-pocket expenses are still $20,000 a year, because neither my psychiatrist of 10 years, nor my psychologist, will accept my insurance.  And, at this point in my treatment, switching doctors would have a deleterious effect upon my long-term mental health.

As of April 19, 2017, I have now lived with chronic mental health disabilities for thirteen years.  However, I still am only thirty-two years old.  While well-to-do, my family is hardly in the top one percent, and they won't be able to pay my medical bills forever.  To be frank, my lack of security from $20,000 a year of out-of-pocket expenses only exacerbates my chronic mental illnesses.  Several times a month, I wake up from jarring nightmares where my family has run out of money, and I am in abject poverty, due to the financial burden of paying for healthcare.  Even though I have been prescribed pills for panic, Prazosin for PTSD isn't a panacea for the pressures that chronic illness patients face, since our medical care is at the behest of Congress. 

After thirteen years of chronic illness, I have finally decided that now is the time to demand universal health coverage for every man, woman, and child.  Now is the time to declare that we must adopt a single-payer system here in Washington, where the poor and middle-class, as well as the rich, can get access to the most cutting edge medications, treatments, and therapies. Now is the time to volunteer for our single-payer initiative, so that grassroots activists in our great state can lead the rest of the nation in healthcare justice.

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