Healthcare Stories

Story #5 - Malignant Cardiogenic Syncope

My name is Barbara Ollmann.  I was born at the Naval Base on Guam in 1960.  We lived in Guam briefly after my birth.  My father was serving in the Air Force at that time, and we lived in base housing.  During our time there, the military used Agent Orange to clear the vegetation from sidewalks, roads, and runways, including in the military housing areas.  This exposed my family and me to this chemical.  So, I was exposed to this in utero and as an infant.

I was born with a condition called Malignant Cardiogenic Syncope.  Basically (laymen’s terms), my blood pressure drops to dangerous levels, and my heart does not speed up to compensate, but instead slows down, causing my heart to stop.  This condition worsens when I experience high stress situations or when I feel anxiety.  As a child, the simple act of startling me would cause me to pass out.  My siblings thought this was funny and would do it as a joke.  As I grew up, the problem became worse.  Finally, I was diagnosed and a pacemaker was placed.  The procedure for placing a pacemaker is extremely expensive, and must be performed regularly because the batteries eventually die.  My pacemaker works on demand and not constantly.  I also have to take medication to keep my blood pressure high enough to keep me alive and blood flowing to my organs and limbs.

In 2000, I had to have my pacemaker replaced.  I had no insurance at this time due to pre-existing conditions, and the surgery was $275,000, which includes hospital, anesthesiologist, surgeon, pacemaker, etc.  I did not have the money to pay this, so waited for my pacemaker to die (this caused my heart to stop 7 times in one week).  I was then able to have the surgery done under emergency basis. As with any surgery, I had to have pre-surgery blood work.  The blood work showed some abnormal liver counts, and I was told to follow up after being released from the hospital.  I had to pay out of pocket for the appointment with an endocrinologist to find out why my liver counts were off.  He performed a liver biopsy, which again was out of pocket, and discovered I had Stage 1 liver cancer.  Now, I consider myself blessed that this was discovered, but again, I had no insurance.  The cancer treatment (4 years’ worth) cost more a month than what my husband and I made was all out of pocket.  Due to the mountain of medical bills, we ended up having to file bankruptcy so that we would not lose our home.

The ACA was literally a lifeline for me.  It has covered my medications, which would cost me approximately $1000 a month without insurance, and covered my numerous surgeries over the past 5 years.  It has also covered for the replacement of my pacemaker and related expenses.  I have had 10 surgeries in my life (this is lumping all pacemaker surgeries as only 1 surgery).  Six of those surgeries have been covered, but the others were out of pocket.

I was eligible for high risk health insurance before the ACA became law, but back in 2000, that insurance would have cost me $1500 a month for just me, required me to pay $6000 out of pocket before they would cover anything, and then only pay 80% after the deductible was met with no maximum out of pocket for me.  It also had a lifetime limit of $1 million, which as you can see, would only cover a few pacemaker surgeries, leaving me nothing for any other illnesses that I may get.

I currently suffer from 12 different medical conditions that prevent me from working.  I am in constant pain and suffer from PTSD. If I lose my insurance, I will literally die as I cannot even fathom what it would cost now for a replacement pacemaker.

Universal healthcare is the only answer to ensure that no one goes without the treatment they need.  No one should ever have to choose whether to see a doctor or pay for food or shelter.

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.

Story #1 – Family unable to find affordable healthcare

I don’t have a story of illness and high prescription costs or anything like that, but I am an average healthy person with a healthy husband and one year old child that is unable to find affordable healthcare.  What is actually most affordable for us is to go without insurance and pay out of pocket for any healthcare we need, including paying the tax penalty.

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Story #2 – All in for Washington

After a long life of health and fitness a gene mutated and last year I had 2 massive heart attacks. I live wit just 1/3 of a heart now. A hiker, climber, kayaker I run out of breath walking around my apartment complex. There is no medical solution yet.

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Story #3 – Unsustainable Situation

I have rheumatoid disease  – have had it since I was 14 years old and I am now 59. I also am a cancer survivor and the child of a colon cancer victim.  My biggest concerns are the ever increasing and ridiculously high costs of medications.  I am luck that I currently have great insurance and much of my cost of medications is covered.  But the huge cost of my medications is passed back to me and my coworkers in the ever increasing premiums.  This cannot be sustained.

 

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