My Health Insurance Story: Why I Think We Should Fix the Affordable Care Act

I believe we should fix the Affordable Care Act. I do not call it Obamacare, though I'm tempted to call the replacement bill WeDontCare. If it passes and is as godawful as predicted, I will call it TrumpCare, because he doesn't want to follow through on his promises. There are millions of stories like mine, and many more stories that are far more disturbing of real people struggling to survive after getting sick. We are the richest country on earth, and the only civilized country that does not provide universal healthcare. I think that's absurd.

I did not have health insurance until I became pregnant at 34. I have never had a standard 40 hour a week job and none of my employers offered insurance benefits. Luckily, I rarely got sick. I was young and healthy. That changed when I got pregnant. I developed a cough. The OB/GYN didn't do any extensive testing or refer me to a specialist. He gave me an emergency inhaler and told me it was asthma. I gave birth, we moved across the state, and we got busy building our retail store. There was no formal diagnosis or suggestion that I seek further treatment. We had health insurance, but I wasn't having problems breathing and the cough mostly subsided. I thought it was related to my pregnancy.

We closed our store five years later. I was not undergoing treatment for nor had I been formally diagnosed with asthma. My husband got a full time job and we had excellent health insurance. I got very sick that spring. I ended up in the ER. I had pleurisy, the doctor wasn't sure if it was an infection or asthma. It took me a month to recover. Once I did, I started seeing an asthma doctor regularly. I followed protocols religiously, but my asthma and the cough did not improve. My doctors put me on an endless array of medications, none of which worked. I was sent to specialists for more testing, but the diagnosis remained the same.

After several years of working with a specialist, we were able to get approval for me to go to National Jewish Hospital for extensive out patient testing. They put me on a new protocol. I took a new job, my husband left his job, we relocated, got new and less robust insurance and I was unable to get approval for follow up. I left the job a year later. That's a long story, but part of the story is that they were forcing me to work in an unventilated building undergoing extensive construction which was exacerbating my asthma. My husband and I were both self-employed moving forward.

This is where my health insurance story begins. I had no idea you could be denied coverage for having asthma. As I said, I've only been to the ER once in 19 years and I've never been hospitalized for my condition. What you may not know is that asthma medications are extremely expensive. They are also a one size fits all approach, which means folks like me who do not have regular responsive asthma are out of  luck. There aren't enough of us to make developing medicines to treat us profitable. Our healthcare system is profit based, not people based. Big Pharma knows they can make a crap ton of money on asthmatics, so they ratchet up the prices and asthmatics are forced to pay them if they want to breathe. Even the generic inhalers are expensive. My medicines cost $800.00 a month without insurance. Many asthmatics end up in the ER and the hospital often.  A diagnosis of asthma is a potentially expensive condition for the insurance companies to cover and therefore, they would rather opt out. If you don't have insurance and you don't have enough money to pay for your medications, you are out of luck. It might interest you to know that you can buy the same expensive medicines I take for asthma in India for a few dollars.

We pay the highest drug prices in the world because our government refuses to negotiate better pricing. Our new president promised to do that, then backed down. Big Pharma is a huge donor and lobbying force. Big Pharma is a big reason why medical care is so expensive and why health insurance for 'sick people' is an issue. They are motivated solely by profits, which means they are not interested in developing drugs that cure conditions, they are interested in developing drugs that keep us sick enough to need to keep using them to survive. If we had medicines and medical treatments at prices they have in other countries and drugs that were designed to cure us, health insurance would be affordable and accessible for everyone.

After I lost my coverage, I figured out how to survive without health insurance, because I had no other choice. We could not afford COBRA. If you have lost your job, paying full price for your health insurance without assistance from your former employer becomes challenging. Before the ACA, you had to maintain continuous coverage, meaning if you lost a job you had to take COBRA or wait out the COBRA period before you could apply for health insurance. This meant that if you had a pre-existing condition and you could not afford COBRA, you went without insurance until the COBRA coverage period ended. This meant your coverage lapsed, unless you got a new full time job with health insurance benefits. Since I was self employed, after waiting for the COBRA period to end, my pre-existing condition resulted in denial of coverage on the open market. This was the cruel Catch-22 of health insurance before the ACA.

I lived in constant fear of getting sick. I lived in constant fear of getting into an accident. I went into menopause, but could not afford to pay full price for hormonal testing and mammograms. I struggled with hot flashes, mood swings, and night sweats. I was able to work with an asthma doctor on discounted cash payments for office visits and free medicine samples to tide me over while we figured out how to buy them for less from overseas. When I had to pick up medicine without insurance from the pharmacy, I felt ashamed and embarrassed. I felt like a failure at being an adult. I felt guilty for being sick and putting a financial and emotional burden on my family. I felt myself descending into a whirlpool of anxiety. When I fell down the stairs and thought I'd broken my foot, I went into full panic mode. How would we afford the ER bill and the x-rays?  My foot turned dark purple and became swollen. My husband was out of town, so I drove myself to a free standing Emergency Clinic and hoped for the best. They told me it was a sprain, but I believe it was a hairline fracture. It still hurts, years later.

When the Affordable Care Act was passed I was finally able to get health insurance. I was finally able to go to doctors again without having to negotiate discounts. I was finally able to fill prescriptions without feeling like a loser. I was finally able to exhale, knowing that if I did get sick or into an accident I would not have to worry about not being able to afford quality treatment or sending my family into financial ruin.

Things went well until a pharmacy technician at a national drug store chain shamed me in front of a line of people and my daughter. I will not give this drug store chain another dime of my money. I had a sinus infection and the doctor prescribed an antibiotic. I went to pick up the prescription.

"We don't take Obamacare," she said, shoving my Blue Cross insurance card at me with a scowl.

"This is Blue Cross insurance. I pay good money for this insurance," I said.

"We don't take Obamacare," she repeated, staring at me, unblinking.

"Who is your supervisor? I need to speak with them." She called back, announcing loudly that I had "Obamacare."

He yelled back, "We don't take that."

"Are you freaking kidding me?"

I started to cry. I was sick, I needed my medication.

"Well, I sure hope you never lose your job and get asthma, because it's awful." I managed to blurt out, through my tears. If my daughter had not been with me, I'm afraid my response would have been a bit more off color. I left and sat in my car in the parking lot sobbing. I felt, again, like a failure at being an adult.

This was when I realized that the propaganda against the Affordable Care Act was poisonous. In her mind, I was on 'Obamacare' because I wanted a free ride. She wasn't the only person to shame me about my health insurance. I had several friends from high school leave comments on my social media posts bitching about having to 'pay for sick people' because of 'Obamacare.' That's how insurance works, I argued. They were unflappable. I see the specialist twice a year. I get a mammogram and a pap smear annually, and I no longer need or use birth control. I buy my medications from overseas and pay for them out of pocket because that's cheaper than buying them through my insurance. I will never get pregnant again. I see my primary care doctor for an annual check-up and the occasional sinus infection. I am not a huge expense for the insurance company, my cost of care is far less than my premiums. So, they aren't really paying for me. I'm paying for me and my husband who never gets sick and our daughter who rarely gets sick. I don't mind paying for other people who need health care, because that is how insurance works.

Before the ACA, if people went bankrupt because they could not pay medical bills, those costs were folded into the cost of medical treatment for the rest of us. Before the ACA, medical bills were the number one cause of bankruptcies. Before the ACA, people who could not afford insurance waited until they got so sick they had to see a doctor, often using the ER as their primary care physician. The ER could not refuse to treat them, even if they didn't have insurance. If they did not pay because they could not afford the bills, that was folded into the cost of medical treatment for the rest of us. Access to affordable health insurance means people have access to preventative medicine and they have insurance coverage to help offset the cost of medical bills. If your argument is that you don't want to pay for sick people, I counter that you are paying less if more people have insurance and regular access to affordable, quality healthcare.

Big Insurance, Big Pharma, and corporate America have sold us all a bill of goods. The reason health insurance premiums have sky rocketed is because they are putting profits over people just as they always have. Aetna pulled out of the markets, blaming the ACA, but a court ruling just showed they lied. They were leveraging coverage under the ACA for their proposed merger with Humana. They didn't get their way, so they took their toys and left the sandbox. The reasons medications are outrageously expensive is because Big Pharma has lobbied heavily to ensure American citizens pay more money for our medications than any other country in the world. That ratchets up the cost of healthcare for the sick, which ratchets up premiums for everyone.

Medicaid was originally only for the people who were too sick to work or get insurance coverage and too poor to afford out of pocket medical care. The ACA changed that, so that Medicaid expanded to allow the poorest people access to healthcare. Many states refused the federal money to expand Medicaid under the ACA. This created a gap, meaning millions of people with income above the threshold for Medicaid coverage but below 138 percent of the federal poverty level were unable to get insurance under the ACA. By refusing the federal money, these states effectively denied their citizens medical care. This is partisan politics at its worst and it has real life and death consequences. Representatives from these states have spent years voting over and over again to repeal the ACA, Governors from these states have steadfastly refused the federal money to expand Medicaid. This means that the people lose. 

In spite of the hype, there are no death panels. The Affordable Care Act is not a disaster. Given time and a bipartisan effort to fix what's not working instead of repealing and replacing, it could and would improve. There are issues with the ACA. I feel frustrated that deductibles and premiums keep increasing while coverage gets crappier. However, subsidies have increased which does help offset increased costs. I am grateful that I have insurance, but I wish it was better. These are real problems that need addressing. Our elected officials need to stand up to Big Pharma and Big Insurance and fight for us.

I will lose my coverage if the ACA is repealed, I am one of millions of people who will lose coverage. Even if I could get coverage, as a woman over 50 my costs would skyrocket beyond my ability to pay for them. That's obscene, especially when taxpayers finance 72-75% of the cost of  health care for a lifetime for senators and representatives and their families. They are required to get coverage through the DC ACA exchange BUT they are not given tiered costs based on age, where they live, if they smoke, or other factors, unlike the rest of us. The insurance coverage they had before the ACA was even better, which may explain some of their fervor to repeal.

If your premiums have gone up under the ACA, instead of blaming sick and old people, which will eventually be ALL OF US, blame Big Pharma, Big Insurance, and our elected officials who pander and kowtow to their corporate donors at our expense. They're fleecing all of us. This replacement bill is a lie. It gives huge tax breaks to the wealthiest and the CEOs of health insurance companies. The subsidies are age based and do not factor income levels, which means that only the young, healthy, and wealthy will be able to afford coverage, but only as long as they stay young and healthy. It will mean millions of people will lose access to healthcare and people will die as a result. Ryan tells people to put money into HSAs, which is great for folks who have enough extra income to stash it away in a bank account and take the annual tax break, but not so great for folks who lack that extra money.

I believe healthcare should be a right. I believe that by structuring healthcare around a purely for profit model, people come last. I believe we can find a compromise between the free market and universal  healthcare, but I would prefer universal healthcare. If you say that healthcare is not a right, I would counter that it should be. When your principles become personal, you may find your perspective changes. You may say that insurance subsidies are entitlements, but I'd argue that the tax write-offs the wealthiest people use to avoid paying taxes are also entitlements. The Ryan plan creates huge entitlement benefits for the wealthiest Americans. I would also counter that we spend billions on wars and corporate welfare, yet we are the ONLY civilized country that does not provide universal healthcare. (FYI: Five of those countries have an insurance mandate, it's not an anomaly.) "Note that universal health care does not imply government-only health care, as many countries implementing a universal health care plan continue to have both public and private insurance and medical providers." The free market can exist and thrive in a universal healthcare system. I believe healthcare should be a right for everyone. Because even you may be one funky mole, one chronic health condition diagnosis, or one horrible accident away from being unemployed, uninsured, and struggling to pay your medical bills.

I hope that never happens to you, because it is awful. 


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