You may be wondering why, since I'm already on Medicare, I have an interest in the ongoing fight to pass the HCR legislation. Much of it has to do with how I ended up disabled in the first place.
My story begins with my first full-time job in 1987......a minimum wage factory job that at first offered no health insurance whatsoever. At the end of the year they had an enrollment period for anyone who was interested in getting some, but since the corporation was so small almost the entire cost was passed along to the employees. For a single person it amounted to almost half of the paycheck every week, so I had no health care coverage at all during the 9 1/2 years I worked there with my mother and sister.
All of my health care was out-of-pocket and only when I absolutely had to go to the doctor. One winter I came down with what turned out to be pneumonia.....the doctor wanted to put me in the hospital, but I couldn't afford to go, so he gave me a whole bunch of antibiotics(samples, thankfully) and had to let me go home. I pulled through, but as the years passed I developed adult-onset asthma and discovered I had allergies.
When the factory closed down due to being underbid by other competitors who were outsourcing to places with lower production costs, I had to go job hunting again. I ended up applying at several temporary agencies and ended up working night shift at a much larger corporation. I eventually was hired as a full-time employee and, after the waiting period was over, I had health care coverage for the first time in 14 years. At first the corporation had its own insurance, then outsourced it to an outside insurer, and then to a couple more so that we had a choice of plans......every time, the costs went up, but at least there was coverage. I ended up changing plans and doctors 3 times, and in the meantime my breathing had continued to worsen.
By the time I switched to my third primary care doctor, they had me on just about everyting they could give me for my breathing and I was still having problems. The second doctor had sent me to a pulmonologist, who after running a few tests dismissed all of my problems to being overweight. In 2002, my third primary doctor sent me to a different one, who also happened to specialize in occupational disorders. He ordered even more tests and discovered that I really had something wrong in the interstitium, where the oxygen/carbon dioxide exchage takes place. My CT scans and X-rays kept showing what looked like(as described by the radiology department) ground glass opacities, and they seemed to be spreading. The pulmonologist wanted me to quit my job then, but since I already had pre-exsiting conditions that I knew would make it impossible for me to get other insurance so I could afford all of my medications I stayed at the job.
In 2003, I came down with a very severe case of pneumonia and was hospitalized for most of a week. I recovered, went back to work and got sick again with the same thing a month or so later, but not as severe, so I was able to recover at home. A few months later, I landed in the hospital again, but not the same one......I was attended by my pulmonologist this time and he was beginning to suspect the problem might be work related but allowed me to return to work once I recovered. I got sick agin later in the year, but again was able to recover at home. I kept going back to work because I needed the money and the insurance.
After the beginning of 2004, I enjoyed several months of relative good health, then ended up hospitalized again in two consecutive months. Same damned probelms: pneumonia, interstitial pneumonitis, and possible polymer fume fever. I finally gave in, during the second hospital stay, to the year-old request by my pulmonologist to have an open-lung biopsy done. It confirmed the diagnosis of interstitial lung disease, but not the root cause of it......they even sent the tissue sample up to Mayo Clinic for their pathology department to look at. They though it might have started with a bacterial or viral infection getting into the tissue, but could offer no other conclusions............so once I recovered from the surgery I returned to work once again.
3 1/2 months later, 3 weeks after a very smoky polystyrene fire at work, I had to have my family take me to the emergency room closest to my hometown........diagnosis pneumonia and acute respiratory failure. I had to be stabilized and transported down to the larger hospital where my pulmonologist worked from since they had the resources that might be needed in case I had to be put on a respirator. I recovered enough to go home, but only with supplemental oxygen.......I've been on it ever since.
I went through an alsmost 3 year fight to get on disability--two rejections, a lawyer and and administrative law judge hearing-- all the while getting long-term benefits from my employer, having first to deal with expensive COBRA coverage, then the even more outrageously expensive high-risk pool insurance offered by my state to those who had insurance, tried to reapply for the same coverage, and got rejected. I had to cash out what little I had in my 401k to afford to get into that pool.......if my family had not been helping me cover all of my bills I would never have survived the waiting period.
But this isn't just about me......it's also about my family and friends and everyone who is facing the same sort of challenges.......
My mother who, since she had no health care coverage, waited until it was almost too late to finally seek medical help. If she'd gotten regular checkups, she wouldn't have spent a month in hospitals, the diabetes might not have caused the congestive heart failure and cost her most of her vision. Thankfully those hopitals had charity programs and wrote off all of her bills, since there was no way the rest of the family could have paid them off, but even those programs are being stretched to their limits by the current health care crisis.
My brother the trucker, who is also uninsured......only time he went to a doctor's office was to get his DOT physical to certify that he was fit to be driving a semi. A few years ago it was discovered he's got high blood pressure.......he takes his meds now, but all of his costs are out of pocket and if the rest of us didn't help him out from time to time, he couldn't afford to buy all 3 of the drugs he has to take every day. Like many Americans, he's one medical crisis away from bankruptcy.
My sister, who lost her job a year ago and who had to decide between keeping her COBRA coverage or being able to pay the rest of her bills. She's uninsured, and not getting the medical tests she should be getting, considering my family's rotten medical history of cardiovascular, pulmonary and hypertensive diseases, plus Type 2 diabetes......she's a medical crisis time bomb waiting to go off.
My youngest brother, who has insurance, but has gotten screwed over by their pre-exisiting condidtion clauses before. He still has the insurance, but, since he now has several pre-existing condidtions, if he ever loses it (or his job) will be up the proverbial feculent creek without a paddle since he won't be able to get affordable insurance, if indeed he can find any at all.
My friend and church organist, who has pre-exisiting conditions. Her husband is of retirement age, wants to do so, and is eligible for Medicare.....she is not and is fretting about how in the hell she's going to afford the $1200 a month COBRA premium just for herself, only to lose that coverage after 18 months and still be left hanging until she's old enough for Medicare.
The 83-year-old mother of my best friend, who, like many on limited incomes, cannot afford to buy all of the medications she's supposed to be taking, even with Part D coverage. My friend is desperately afraid for her mother's health.
I've been in that boat myself.....last summer I fell into the coverage gap and ended up playing medication roulette myself by quitting my most expensive drug. Once I finally saw both of my doctors, we reached a compromise.......I'd stay on a substitute med that had only half of the components of the orginal one and they'd recheck me after the beginning of the year. Oddly enough, my health has improved since the change........I guess I got lucky, but not everyone who faces a choice like that has a good outcome.
I know that the current bills aren't perfect, but we need to start somewhere in order to help at least some of the folks like the ones I know. Hopefully there will be an end to the infernal legislative constipation today and the bills will finally pass.
Update: Hooray, they passed the bill!!! Too bad there's no public option.......yet ;) I personally want to see Medicare for All, so that nobody else ever has to sacrifice their health like I did to have health care coverage.