This birthday is special to me.
Because it is one I didn't expect to necessarily have.
When I was in summer of my seventh grade year, I was diagnosed with Hepatitis C ( HCV.) One of the key elements I took from that doctor's appointment was that I would need a transplant around 30, or die. And given the knowledge he had and the virility of my, to be later understood as, variant strain, a transplant would only extend my life a short period of time.
It was a prediction that I have fought against my entire life. Two months ago, I received a liver transplant. And presently I am on treatment for HCV, my viral load fell from 100 million to 33,000 at present following four days of treatment.
I am not yet out of the woods, but I'm better off than he predicted. Because he also believed that my state would be far more impacted by the virus.
I stay healthy otherwise, and a life of keeping myself that way has helped me survive. But by no means could I be writing this now without the support of others near and far.
So this isn't an interview, it's just a format to help isolate certain issues, but what are we talking about?
Presently we are in dire straits politically, and many don't understand just what the stakes are.
I'm talking about the ACA aka Obamacare.
First off, I want you to know that I am biased. After all without the ACA, I wouldn't be here. To make this more complicated I'm going to state that I'm a registered Republican, always have been. In fact, I come from a line of Republicans, my family has been here since Coolidge and I take pride in this.
So we're essentially talking about how the ACA/Obamacare saved my life.
You've had a preexisting condition your entire life, one that insurance companies actively prefer to deny treatment for, how has that impacted your life?
I've been aware of healthcare policies and health insurance since high school. I learned how to understand benefits from my mom, who has worked in HR for as long as I've been alive. My senior year in college I began looking for a job that would give me the benefits I needed. I focused more on benefits packages than compensation, because of the high costs I would pay otherwise.
My first failed treatment in 2008 showed me the price to lose insurance. That treatment would have cost me over $60,000 even having failed and stopped halfway through. I graduated in 2008, and like many others at the start of the recession, finding any decent paying job was a challenge.
When I graduated I realized that I would need to stay in school full-time until I could get a job to so as to not lose health insurance. So I enrolled in classes and worked 25-39 hours per week. When I found an available promotion, I seized it. I took a chance and began a second treatment, and while I was working 39 hours a week and making a living wage, in order to have benefits, I still went to school full-time.
I was lucky in that four months before I turned 25( my parents' insurance had a policy that allows students under 25 to be on their parents' plan) I managed to find a job with benefits.
That next year in 2011, I planned on starting treatment. With a solid job I could try the one that would eventually cure my mom. But a week before an esophageal bleeding episode would send me into the hospital, I was pink slipped. To make this more confusing, it would be recalled, and sent again twice.
After receiving my MELD Score of 14, I began to look for a new job. Thankfully my friends knew of an opening and I started later that year.
There was one problem. The company used a temp service to hire its own employees allowing them to bypass benefits. Using a temp agency like this is common, and lives in a legal gray zone. The temp agency can't exclusively cater to one company and/or be owned by the company.
Thankfully the ACA stepped in twofold: it extended my coverage until 26, and my preexisting condition was no longer a coverage concern.
That being said, the ACA was new and still very shaky, and insurance companies can retroactively deny coverage.
So I prepared myself for a potential situation wherein the ACA is repealed and my insurance retroactively kicks me off of it, using my preexisting condition as a reason.
What this meant for me is that I would need to use COBRA to extend coverage until I would start my new insurance in April. So for two months I would see nine hundred dollars a month fade away into nothing to insure my insurance would still carry me.
What would have happened without the ACA?
Without the ACA I would presently still be in debt from a six month coverage gap. Because as I would begin my new job, my left femur was injured in a car accident. While her insurance covered the losses, it was reimbursed months after the collision. I would not have been able to cover my medical bills, or any other incidentals. My HCV treatment without insurance was over $100,000 and the medical care otherwise meant I hit max out of pocket on a yearly basis.
Meaning I would have no choice but accumulate unpayable amounts of debt with the hope that bankruptcy could possibly save me. Thus limit my housing options, my ability to cover future medical costs, and any potential use of my economics degree. Essentially a recipe for homelessness.
Thankfully, the ACA does exist, so that didn't happen.
Those two parts of the ACA/Obamacare legislation were vital in your life, how else has it affected you?
After the third treatment failed at the end of 2012, my symptoms began to worsen.
Ascities, an extreme form of water retention, became an issue of vigilance. While I was prescribed a solution in the form of diuretics, I would only take them occasionally. Because if I took them regularly, my electrolyte imbalance was such that my legs would randomly spasm out of control.
I would find a method that would keep me moving and alleviate the issue: Balancing my electrolytes. While I couldn't control how my liver used them, I could make sure I was always consuming a specific amount.
The ACA required restaurants of a certain size to post nutritional information, and increased requirements on packaged foods. Without that, it would have been incredibly challenging to navigate.
The amount of magnesium, sodium, potassium, sugar, and water would change, and I learned how to understand each different pain and what it associated with. It took months to find that balance. Unfortunately, I was terminated at the end of 2013. While the termination was unlawful and discriminatory, fighting it wasn't an option. While I was legally disabled, disability would take time and would not be enough to cover the cost of health insurance. While it did allow MediCal/Medicaid, my treatment wouldn't have been covered under it at that time. So I worked as much as I could, enough to obtain insurance.
Wait, you were legally disabled, why didn't you have disability Medicare?
When you become disabled, it can take between two and three years until you can have access to Disability Medicare. I guess they hope that you die before you need it. Because, of all the laws and decisions I've read, I can't figure what their rationale is.
Without a job I was frantically familiarizing myself with Covered California.
Covered California is the California specific version of Healthcare.Gov, the ACA marketplace, there are a lot of mixed feelings about its pricing, where do you stand?
First off, the marketplace prices are set by private insurance companies. And because of this marketplace, smaller locally based hospital-insurance hybrids have been growing. The prices are still primarily controlled by two elements: the top four insurers, and the banks that are invested in these insurance companies.
Sounds like you're into conspiracy theories.
Technically, that's what this is, they're conspiring to control prices. We have no way to correct this market inequality besides government action.
The ACA allowed me access to insurance, and because my income was eligible for the credit I was able to purchase an affordable plan and keep my doctor.
It allowed me to postpone my death by a year as I zeroed out on my fourth treatment. The victory was short lived as I hit my out of pocket maximum, a four thousand dollar deductible and a week in the hospital after a run in with C.Diff at a diner. The treatment had failed and the virus was back in the millions.
Thankfully, I soon began a fifth treatment. The year ended and new insurance plans came up, the one I was on previously was shuffled a bit so they could legally increase the price.
The plan increased in price by about forty dollars per month, a 13% increase with few noticeable changes in benefits. While irritating and burdensome, it was still far better than the alternative. Each of these treatments combined cost me out of pocket only about $12,000. Which may sound absurd for an effective income of $18,000 per year but remember that without it, if I could even get the treatment, I would be out over $300,000 on treatments alone.
To date my cumulative bill to insurance total is approaching six million dollars.
TIL: I'm not a cheap date.
It was worth it though, you were cured, right?
No, the fifth treatment failed, and within a year my liver went from an average MELD of 20 to 30. I was steadily dying, and it was visible. To hide the jaundice I maintained a tan; however, by June the jaundice made me look more orange than anything else.
My treatment was postponed as I was no longer allowed treatment due to my high MELD score, and so I waited by my phone. I had been on the transplant list nearly three years by this point and only received two calls before September of last year.
Before I would be between hospitalizations near the end of the year, my Disability Medicare finally came in. While it is more expensive per month than my previous plan, I was able to have three weeks of hospital stays, a week of at-home nursing, and dozens of RXs taken care of for very manageable copays... Oh, also a liver transplant and subsequent medication.
It sounds like the ACA was the bridge before Medicare for you, was that always the plan?
No, no one means to be sick, I did everything in my power to live and utilize the tools I had access to. I didn't want to get to the point where I needed Medicare. But I can say this comparatively, having it is one of the most relieving insurance plans I've had.
So you're alive today because of the ACA and Medicare, how do you feel about the repeal and replace?
I'm interested to watch as the GOP replaces The ACA/Obamacare with The ACA/Obamacare or Ryancare.
Don't you mean Trumpcare?
No, Trump has nothing to do with helping anyone but himself, while I disagree with Paul D Ryan on most things, he is the congressman who will craft a replacement. He has been at the head of this opposition since the ACA came into being.
Like the Sanders v Cruz debate, the GOP wants to keep things vague, they don't stand for anything until the day they vote. Unless they author/co-author legislation. It's their M.O. because if you haven't taken a stance, citizens are less likely to be angry with your decision.
The new Right to Try legislation will most likely fuse into an Obamacare replacement.
We can change this, we can make sure we have a good healthcare system. Just call your local Congressperson and/or Senator and tell them what you like or don't like about the ACA/Obamacare.
A legal document must be read through and through, to understand it's gravity. I say gravity because it doesn't just affect its intended target, it affects everything around it. The ACA aka Obamacare is one of the most powerful pieces of legislation I have seen in my lifetime. It saves lives, improved lives, expanded Medicaid to millions and expanded potential millions of dollars in productivity while decreasing the reliance on (medical bill related) bankruptcy.
After all, a healthy workforce earns more, spends more, and lives longer.