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prettyrottenguts · 7 years

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I’ve Got a New Condition — Chronic Repeal Exhaustion

The GOP has threatened to repeal the Affordable Care Act (ACA) since it became official. They dubbed it Obamacare. Many Americans believe that Obamacare is different than the ACA, and the GOP has seized upon that. Our current president wants to repeal it. On Monday, February 27, 2017, President Trump made a comment that “Nobody knew healthcare could be so complicated.”

I beg to differ. I seriously, beg to differ.

For the past decade, every single professional move that I’ve made has had a health insurance component attached. The day I was formally diagnosed with Crohn’s disease was the worst and best thing to happen to me. It validated I was truly ill after all the years of being ignored by doctors, but it also tagged me with a pre-existing condition for the rest of my life. The diagnosis while a blessing, also cursed me with the necessity of never being able to have a lapse in health insurance coverage.

I assure you Mr President, even back then at 25-years-of age, I knew healthcare was very complicated.

Fact: About 52 million Americans (or 1-in-4 people) have a pre-existing condition.

The fear I lived with for over a decade now, was that if I went without coverage for too long my pre-existing condition won’t be covered. In order to take on a new plan, one must provide a certificate of coverage from your former insurer proving one did not go more than 90 days without coverage. Without this certificate one may get health insurance, but a pre-existing condition won’t receive coverage. It eventually may get covered, but a certain amount of years would need to pass. It’s a truly daunting and exhausting process.

Around the time the economy began to tank and ACA provisions came to life, I picked up a private policy. This plan was imperfect just like the ACA, but it was all I qualified for since I had Crohn’s disease. It was a high-deductible- and high-premium plan. I didn’t have much choice in taking this plan. I was just grateful that I had something instead of nothing and worked myself into the ground to afford it. It was exhausting. I was exhausted. And exhaustion is a dangerous cocktail when you have a chronic condition.

Proof of continuous coverage was the name of the game. I was hoping to keep the plan long enough until I would go full-time with my job that had strung me along as a contractor. Sadly as my health began to deteriorate they rescinded the offer to go full-time and left me as a contracted employee. At least I had the high-premium high-deductible plan to keep coverage intact and was able to afford it.

As we all know, life can happen at the drop of a hat.

When my former boss deemed my health a “liability for the team” and shifted my pay to per diem, I was left with little-to-no income and a $400 monthly bill for insurance coverage, mortgage, car payment, utilities, etc... This list does not include the additional cost of doctor appointment co-pays, medications, or procedures. Nor did it include cost for eventually needed infusions or the cost associated with the infusion center where the infusions were administered.

In less than six weeks time the cost of the infusion treatment’s loading doses (three doses total) came to over $1,000. If I had to pay for the medication, it would have been upward of $45,000. Luckily the medication cost was sponsored by the manufacturer’s program for people whose insurance wouldn’t cover the med. By the third month, I was encroaching on $2,000 in infusion center co-pays alone. This doesn’t count the $1,200 worth of monthly premiums I paid into over that time span. I was bleeding money out the wazoo, and actual blood. For those unaware, internal bleeding is a thing that happens with certain digestive diseases like Crohn’s.

Below is a picture of me trying to make a bad situation seem normal and okay for other patients in the same boat.

I would like to point out the ACA is imperfect. The original iteration of the ACA had a lot more benefits than detriments, but as always ends up happening bureaucratic bloat occurred.

Since 2011, better plans became available in many states, but not all. This disparity is part of the reason why the ACA isn’t popular amongst the people who are paying the same premiums I used to pay, although they may be receiving a far better plan.

The ACA was designed to help spread out cost affordably, but inevitably some people, in certain states like Florida (where I live), got the shaft. They were not getting fair premiums and were having trouble finding practitioners who would accept the coverage they’re paying so much money for, and I urge them to look to news archives about how their Governor affected these premiums. And how insurance company CEOs are driving up cost in the name of their shareholders and higher revenue, as well as multi-million-dollar end-of-year bonuses to line their personal pockets. But I digress.

At the age of 30, I received a lesson in healthcare economics that I never asked for. Since then, I have fought for others to not have to have the same experiences I was forced to: lose job, forced to sell a house I built from the ground up (see image below) along with all worldly possessions.

The ACA, as I mentioned before is imperfect, but two of its provisions saved my life. When I was officially declared disabled, the ACA had a provision that allowed me to go under my mother’s employer’s health insurance plan. She could have retired by now, but remains working to help keep me insured until I’m well enough to return to work. Another provision that the ACA provided was extinguishing lifetime expenditure caps. Aside from those two provisions, there is also the pre-existing condition provision that would allow me to apply for affordable coverage and not get denied due to my various conditions if / when I am able to work and can afford to buy my own policy once again.

On Sunday, during CNN’s State of the Union broadcast, Rick Santorum sat on a panel and opened his mouth and said the following words, “... that thousands maybe approaching millions of Americans are paying 9 months for insurance...” Wow thousands morphing into millions is impressive in and of itself. Next, he continued the character assassination of the chronically ill and insinuated those with pre-existing conditions are scammers stealing health care. He implicated all Americans with chronic illnesses are only paying their monthly insurance premiums up until September, and went on to explain how they don’t lose their coverage for those three months of non-payment and due to provisions in the ACA are allowed to go and buy a new plan come January without consequence. [You can watch the clip here: https://youtu.be/aQO-xOntmEo.]

Confused? Irate?

Yeah, me too.

Let’s burn down an entire program based on an unfounded hypothesis, rather than fixing the alleged loophole he’s speaking of. Makes a lot of sense.

Editor’s note: Mr. Santorum if you ever see this, contact me and let’s have a chat.

[Screen shot below taken from appearance on CNN’s SOTU appearance, link above.]

I’d like to point out that Santorum has a young child with Trisomy 18, which if a child survives past birth requires costly medical care for the rest of their life. You would think Santorum would be more empathetic to the plight of those who need pre-existing condition protections in order to survive. However, it appears Rick Santorum sees the chronically ill as scam artists.

For the record, I’ve never met someone with a chronic illness willing to risk loss of coverage or future ability to retain coverage. Nor have I met a patient willing to be sent to collections. But this is what Rick Santorum thinks of us.

This makes me wonder if many of his GOP peers also think of us as such? Some of these GOP peers who according to the odds, more than likely, have pre-existing conditions themselves, no less.

This Saturday, I leave for Washington D.C., to attend the Digestive Disease National Coalition (DDNC) forum. We will advocate for agenda items such as funding for disease and treatment research, along with asking for provisions to keep patients with pre-existing conditions safe.

I’m not against changing the ACA from the iteration it’s taken on, but I do want to save the provisions that keep vulnerable people safe. I do want to help make it better. However, I’m not seeing replacement plan proposals that will benefit anyone who isn’t of decent financial means, and I have not seen a single thing that will benefit the estimated 52 million Americans (one-in-four people) with pre-existing conditions. All the while GOP members cry “Repeal!” and “It’s a disaster!”

I’m only seeing disasters being presented. I’ve never so much wanted to be proven wrong before in my life and still hold some hope that some kind of middle ground can be reached, but my hope is fading quickly.

President Trump has met with politicians (majority of which belong to his party), and industry leaders in the tech and business sectors, as well as the health insurance industry. The people he’s refused to meet with or acknowledge since becoming president are the patients worried about the next steps to his Repeal and Replace ideology. His comments on Monday about not realizing healthcare was so complicated, is worrisome, to put it lightly.

It’s very complicated. Lives hang in the balance based upon whatever form of “Repeal” this administration takes on.

And so I fight, and will continue to battle through Chronic Repeal Exhaustion, until this matter is dead in the water or I am. I prefer the former.

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