One Trade Unionist’s Horrific Experience Under the Affordable Care Act (ACA)

When the President first proposed the “health care reform” that is today known as the Patient Protection and Affordable Care Act (ACA), he famously said, “The good news is, if you like your health insurance you get to keep it.” What he should have said was, “If your boss likes your health insurance, you’re stuck with it.” He could have added that if a mean-spirited Republican governor got to block good health insurance options, you would really be stuck.

What follows is a true story of one worker’s experience with “affordable care.” He is a member of the New Jersey State Industrial Union Council and an activist with the Labor Fightback Network. His experience illustrates the problems with so-called “Obamacare” and shows why working people need a single-payer health plan.

When I got my journeyman’s card in the International Typographical Union in 1978, I had health insurance coverage that would be the envy of any working person today, and I got it on Day One. It covered everything, and I didn’t have to pay a dime for it, unless the employer contribution under our contract failed to meet the premium increases (and it often happened) in the last year of the contract. The Scale Committee always managed to get the employer’s contribution to the Welfare Plan increased in the new contracts to cover the previous increases—and even back then the cost of health insurance was rising much faster than inflation, which was running rampant at that time. When we did have to cover the shortfall in the Welfare contributions, it was a few dollars a week, nothing like the payroll deductions that most workers have to pay now.

In 1992 the shop closed, and I was unable to get another union job in the trade. For the rest of my working life, I had to cope with health insurance plans, including Health Maintenance Organizations (HMOs), with high deductibles, high copays, and a long list of procedures and medications that were not covered. And of course, there was a hefty deduction from my paycheck to pay for it. As inadequate as it was, I was glad to have it when I was diagnosed with prostate cancer in 2001. I was able to get treatment and remained cancer-free for eleven years thereafter.

As working people’s living standards steadily declined through the Reagan, Bush, Clinton, and son-of-Bush administrations, I gradually gave up on the idea that I would ever be able to retire, and I was reconciled to remaining on the job until St. Peter tapped me on the shoulder and said, “It’s time.”

That changed in November of 2010, when my boss informed me that he had to “reduce payroll” and that I was being terminated “effective immediately.” I was given two months’ pay as severance and a bill to continue my health insurance under the COBRA plan—$1,400 a month, to cover me, my wife, and my daughter. Here’s the thing: this was no “Cadillac” health insurance plan! It was barely adequate, and in many ways inadequate, but adequate or no, $1,400/month was a budget buster. If I attempted to keep the health insurance up, my family would be destitute within six months. My family and I became uninsured.

As bad as private health insurance often is, I don’t recommend being uninsured, especially if you’re at the age where health problems start showing up more often. In the early spring of 2012, my doctor informed me that my prostate-specific antigen blood test (PSA) had gone from 0.2 to 7.0—higher than it had been when I had cancer the first time. I saw a specialist, who confirmed: the cancer was back. Recurrent prostate cancer cannot be cured; it can only be managed. The usual treatment is an injectable drug to suppress the hormone testosterone, which causes the malignancy to grow. It is administered every three months, and it is very expensive.

Prostate cancer generally is not life-threatening, but left untreated it will metastasize. That’s when it kills—when it gets into the bones, the pancreas, or travels up the bloodstream to the brain. So it’s important to keep it from growing and metastasizing. At first, I tried holding it back with diet—including going to a completely vegan diet—and immune-building supplements. The PSA kept rising for about a year, and here I was uninsured facing massive expenses to stay alive. Fortunately, the doctor and I came to an arrangement: he offered treatment to me at his cost, and I managed to “fund-raise” the money from sources within the family. We’ll revisit this issue.

That summer I was in Newark, NJ, on a 97° day and got heat stroke. A friend—I should say a life-saving friend—called the ambulance and I was transported a few blocks away to University Hospital. I was there from late afternoon until past 2 a.m. In those hours I ran up medical bills exceeding $8,000. It took nearly eight months to straighten the mess up. I managed to get the bill reduced considerably, but I will still be paying it off for years to come, for perhaps the rest of my life.

Then in December I had another fainting spell: two days after Thanksgiving I collapsed in my bathroom and had to be taken by ambulance to the nearby hospital where my personal doctor had attending privileges. I spent two-and-a-half days there, running up thousands more dollars in medical bills. Again, I negotiated them down, but I will be paying indefinitely.

No, I don’t recommend going without health insurance.

I am not yet old enough to be eligible for Medicare, so when enrollment opened under the ACA, I did as I was told and tried to enroll. What an ordeal! First I tried the website. I would enter my information, and the website would change it. Then I attempted to edit the information, and the website threw all of it out and made me start again at the beginning. It changed the information I had entered in the same way the second time! Finally, I called the enrollment phone number and asked if I could submit my enrollment anyway. I was told that I could, but when my reply came back, the spaces where it was supposed to tell me how much of a subsidy I could get were blank! I called the phone number. The first time I called I was told that I didn’t qualify for any subsidy at all as a long-term unemployed person over the age of 60, who has cancer! I called again and was told to apply for Medicaid. I tried that and found that I did not qualify for Medicaid. This runaround went on for weeks.

Of course, I was not the only American coping with this non-functioning website. It soon became a national scandal, ultimately costing Health and Human Services Secretary Kathleen Sebelius her job.

After two months, the ACA website was revamped. I threw out my original enrollment and attempted to re-enroll from square one. This time I was given a subsidy that seemed in line with my income, and I proceeded to enroll in a health insurance plan that cost $285 per month to cover my wife and me.

The policy reminds me of nothing so much as the health insurance I had when I was working—overpriced and inadequate. The deductible is enormous, and the copays are not much different than paying the full bill at the doctor’s office. However, I can’t afford another hospitalization without insurance, and the regular testing that every cancer patient needs to have becomes cost-prohibitive without health insurance. Of course, like so many others, I’m scratching my head and asking, “So this is health care reform?” However, I was quite surprised by what I was to find out next.

When I became insured, the specialist treating my cancer wrote a prescription for the testosterone-suppressant and asked me to fill it at the local pharmacy. His nurse would still administer the injection, but I would supply the medication, and my insurance would pay for it—supposedly. I was astonished when the local pharmacist informed me that my insurance did not cover the medication that is quite literally keeping me alive, and that to fill the prescription it would cost me over $3,000 per dose, which, by the way, is a 500% markup (according to my doctor). I am still reeling from this shock. The good news is that my doctor is willing to continue the same arrangement we had when I was uninsured.

Is this what the Obama administration considers “health care reform”? Is this the best that can be done in the United States of America? So many countries which are less rich and less powerful than this one have single-payer health care systems that provide care for every citizen. Even after enacting the ACA, our health care system is a national disgrace.

The inadequacies of the so-called “Affordable Care Act” have handed the labor-hating politicians of the far right a golden opportunity in the upcoming elections. Working people, including rank-and-file trade unionists, can see that the Obama administration’s “health care reform” is woefully inadequate. Elected union officials and elected government officials who claim that the ACA is working well will lose all credibility. We should not have to choose between the dishonest defense of the ACA on one side and the across-the-board attack on health benefits on the other. The time for the organized labor movement to rejoin the campaign for a single-payer health care system, starting with Medicare for All—HR676, sponsored by John Conyers of Michigan, and S1782, sponsored by Bernie Sanders of Vermont—is now.

About elnwebmaster

This is the discussion blog of the Labor Fightback Network, an auxiliary to the website. It is designed to facilitate discussion among labor activists concerning the critical issues facing working people in the current economic crisis. Readers’ comments are welcome, but flaming is not. Any comments which are racist, sexist/homophobic, or disrespectful on a personal level will not get past moderation.
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