The Affordable Care Act is a godsend. Please don’t take it away from me.

I have been reluctant to share my story……just because that’s part of who I am. I don’t typically broadcast facts about my personal life… anyone. It’s not in my nature. Even posting on Facebook is an anathema to me. But this is different. And after much procrastination, deliberation, and consternation about what’s to come, I’ve decided that it’s too important to keep quiet.

I have ulcerative colitis. Have had it for almost 17 years. Ulcerative colitis is a chronic—meaning incurable—disease of the lower intestine, or colon, where part or the entire organ becomes inflamed, irritated, often with open ulcers that bleed and produce pus. People who suffer from ulcerative colitis, or are suffering from a flare up, cannot allow themselves to be very far from a bathroom, as the sudden need to literally rush to the toilet can hit them at any time. When experiencing a bad flare up, it’s not unusual for me to have to rush off to the bathroom more than 10-15 times in a single day. It can even cause the occasional incontinence.

Colitis sufferers also have the added bonus of chronic fatigue and low energy levels. It can be a severely debilitating affliction. No one knows what causes it, and even people who have lived with the disease for long periods of time (like myself) cannot know for sure what will cause a flare up. In some sufferers, certain foods are triggers. In others it can be stress related. Or a combination of things. Even after decades of research, ulcerative colitis is a near total mystery even to the best gastroenterologists in the world. And it cannot be cured, only (hopefully) controlled.

When I was first diagnosed I was fortunate enough to be working for the San Diego Chargers, a job that provided health insurance as part of my employment package. I was able to go to a doctor (several, actually), was eventually subjected to a colonoscopy, and diagnosed with pan-colitis, meaning the disease was well advanced and had affected my entire lower intestine. I was in bad shape. It was a living hell.

Because I had insurance at the time I was able to get treatment. I was prescribed several different medications—Asacol and prednisone initially—and eventually got the disease under control. It was also understood that I would be taking medication (the Asacol, or something equivalent to it) in order to keep the disease under control for the rest of my life. After finally getting the disease under control with a bombardment of prednisone, I was able to ween off of that nasty drug, although I still had it available just in case I needed it to help with the occasional flare up. But for the first 12 years or so the Asacol/Lialda/sulfasalazine (which is the cheapest and only generic alternative, but your options are limited) was enough to keep it in check.

However, as happens with many medications that one takes for a long period of time, your body builds up a tolerance to it and it becomes completely ineffective. For me this eventuality came at the absolute worst time.

It is very easy to take employer provided insurance for granted, even for someone like me with a chronic disease. My colitis was kept in check for the most part, and so I didn’t give it much thought when I was eventually forced to choose to leave the Chargers and the insurance they provided. I kept that policy for as long as HIIPA laws would allow, having to pay the full expense out of pocket—and it was expensive—as I went to work for a small real estate finance firm that could not provide insurance. After the HIIPA term expired, I bought a policy that on its face was semi-affordable, but with high deductibles and other bugs that made bankruptcy a likelihood in case of a catastrophe, or even an overnight hospital stay. And it almost did bankrupt me, but that’s another story for another time.

When the economy collapsed at the end of 2008, the small real estate finance firm eventually concluded it could no longer keep me on, and I was laid off. Unemployed, eventually I could no longer maintain even that crappy insurance policy. I became one of the country’s tens of millions of uninsured, and with a chronic disease that could flare up at any time.

And flare up it did. Around the end of 2011, beginning of 2012, it came on like a freight train. I continued taking the sulfasalazine because it was all I could afford, but doctor’s visits were out of the question. My life became a living hell. Just leaving the house became an extreme risk. For two years I suffered. I could barely function. Working full time was almost out of the question.

When Barack Obama began implementing healthcare reform, it gave me a glimmer of hope. And when the Affordable Care Act came into full effect and the health care exchanges were officially online, I took full advantage.

I am not going to tell you that the ACA is perfect. It is not. Everyone knows it could stand improvement. A public option would have been nice. Price controls on prescription drugs so that manufacturers can’t gouge American patients would be good too—this is quite possibly the biggest drag on the law’s effectiveness.

Here in California we are fortunate to have a decent menu of options when it comes to insurance providers, but there are other parts of the country—where Republicans have refused to step in and help make the law work in a deliberate attempt to undermine it—where shoppers have very few options, if any. This could easily be fixed if there was any sort of will to do so. But since Democratic supporters of healthcare reform aren’t in a position to go it alone, and need the cooperation of their Republican colleagues to implement those fixes, we’re stuck with what we have.

The initial plan I bought on the Covered California exchange was incredibly affordable (with the subsidies), but it gave me very few choices of gastroenterologists; it was still better than the nothingburger I had before. After nearly a year of battling with a doctor that simply wasn’t very good, I had to switch insurance carriers in order to gain access to a doctor that might actually be able to help me. The new plan cost quite a bit more—more than double what I was paying, and starting in 2017 my premium jumped another $70 per month—but has been well worth the expense.

Conservatives’ complaints about the ACA are generally centered around the increasing premiums. They think it costs too much. It doesn’t. The plan I was on pre-ACA cost me more in premium payments, covered far less, with enormous deductibles and exorbitant out-of-pocket expenses. With my ACA plan, my out-of-pocket expenses are limited, meaning I don’t have to be overly concerned with whether I’m going to eat and pay rent or pay my medical bills. Simply put, I can actually afford to get treatment for my colitis, whereas before I was forced to suffer.

Although I have had a hiccup or two with the ACA—or Obamacare, if you insist—my experience with the law has been overwhelmingly positive. It probably saved my life, and I am grateful beyond words for the ACA. Because I now have insurance, I have been able to get access to new medications that there is no way in hell I could ever dream of gaining access to. We’re talking thousands—in some cases tens of thousands—of dollars per treatment! (This is what I mean by the need for price controls.)

To be clear, Obamacare is not failing; it is not “crumbling” as Congressman Darrell Issa has insisted. In fact, it has been an overwhelming success. To kill it or significantly alter it would be a crass and cynical act of cruelty on the part of our elected leaders who are supposed to act in our best interests.

The prospect of Republicans taking away my access to healthcare is terrifying to me. Of particular concern is the affordable aspect of it. Health savings accounts are worthless for someone like me, and are no more than a callous joke for people with limited financial means. High risk pools have been tried before, and all they do is jack up the price of coverage for everyone, and bankrupt anyone forced to participate in them; with premiums in excess of $1,000 per month for high deductible policies, you may as well not have insurance at all.

I’m glad that people nationwide are finally beginning to wake up to what repealing the ACA will mean for real people; 20 million of us stand to lose access to health care, and that doesn’t count the millions who will lose Medicaid, and the folks who live in rural areas whose hospitals will close because no one can actually pay for their services without health coverage. But it would sure be nice to see members of Congress place actual, real Americans’ lives ahead of their political and ideological ambitions. It’s what we sent them to Congress for in the first place.

The worst thing that could happen is that Republicans will return us to the system we had before Obamacare, which is apparently what they want—to give insurance companies carte blanche to operate however they see fit. This would be absolutely catastrophic for me and millions of people like me.


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