Back in the late 1960s my father’s sister developed breast cancer. If you are old enough, you probably remember that cancer was so horrific with few cures in those days that most people never said the word. It was the Big C. If it was uttered, it was in a whisper. Watching her decline, I assumed I would get breast cancer.
My mom and all her side of the family died from issues related to heart disease. No doubt in my mind that I have a genetic disposition for that.
I am not a morbid person. This is not anything that fills my waking hours with dread. I am not afraid of dying; I just have a lot of living yet to do, so I don’t want to go before my time. But recently, very recently, I have been staring at a new death option. And it makes me angry.
With the threats/promises to repeal the Affordable Care Act, the Republicans in our lives have also threatened and promised to kill 20 to 30 million people in this nation. We, the ones with the death sentences, are your neighbors and your family members.
Why will we die? In my case, I will suffocate. I have chronic asthma. It is well maintained with two medicines that currently cost me $100 a month. Their out of pocket cost, without insurance, is close to $1000 a month. Guess what? I can’t afford that.
So, very simply, if Congress in their infinite wisdom think it is more important to destroy the law because it was implemented by Obama, instead of fixing it (good luck with that if you want to keep the insurance companies in charge, but that’s another story and blog) I will die.
So now the question is, will you also die? Will people you know, people you love, also be murdered by Republicans?
That sounds harsh, but think about it. There are two components in the ACA that help people. First, the insurance premium (set by the insurance companies, not the ACA) is reduced based on income. This is part of the benefit that will be removed. The premium I need to pay is $535 a month. Before the reduction, which is based on my income, my premium would be $875 a month.
Secondly, the ACA eliminated discrimination insurance companies had based on pre-existing conditions. I was diagnosed with asthma when I was 5 years old. This is a pre-existing condition that before changes in the law meant I had to wait 12-18 months when changing medical insurance companies (because of a change in jobs) to be covered. I was fortunate that my breathing issues were pretty minor until I moved to West Virginia in 2007. The Ohio River Valley is one of the areas in this country with a high cluster of breathing problems. After decades of heavy industrial air pollution and the way the air currents flow, the environment caused a major decline in my ability to breathe. My health issues were covered at the time because of a change in the law back in the 1990s: employer offered health insurance would not have the pre-existing restriction if the employer had more than 100 employees. My husband worked at one of the state universities, so we had a state employee health plan. So, I was able to be treated for the asthma while we were living there.
But in anticipation of my husband’s retirement, the question of my healthcare once again raised its head. His retirement package included an extension of my health insurance coverage but that would run out before I would become eligible for Medicare. I anticipated a major gap of coverage and was very pleased when the Supreme Court ruled the ACA could be implemented. And so, I have been able to continue to have insurance. I have written about my lifelong experience with my health insurance coverage in January. I did that not to elicit sympathy but to share what I believe is common situation. Many of us have known people who have had someone with a major illness and our American healthcare insurance coverage has always been a factor in the rising number of bankruptcies in this country.
When we talk about “millions of people will die” if the Affordable Care Act is repealed the number is hard to understand it. Recently, a health-care analyst broke the statistics down to Congressional districts. In other words, if Congress decides to erase our health care, they will lose this many people (voters) in their own districts. I now know I am one of almost 80,000 that will be affected in my Congressional District. The difference between me and you? I know my Congresswoman, Suzanne Bonamici is one that is working to keep the program. What about YOUR representative?
And you know what? There is a huge group of people in this country who love their health care coverage through the Affordable Care Act but despise Obamacare. Their lack of comprehension is a sign that we have a major problem with people who no longer know how to think. But that’s another blog……
So many changes. Any time you can talk to someone whose life has spanned more decades than your’s, an interesting discussion could result if you asked about big changes they had observed. I thought I’d take you through a small walk about health care as I have experienced it. I suspect this post will be longer than most I write.
My mom trained as a nurse in the 1940s and met a doctor studying to be a pediatrician at the hospital in New York City. When she and my dad moved to New Jersey they were thrilled the doctor had set up practice in the next town and I was told years later that I was his first baby, whatever that implies. Anyway, we would go to his office, located in the first floor of a multi-family house and wait to be called in. I read Highlights magazines and graduated later to Reader Digests. (I guess some things never change.) I had my first asthma attack at age 5 playing with a hula hoop. I received allergy shots with needles that were sterilized with the glass syringes in the doctor’s office in their autoclave. When I was too sick to go to his office, he came to our house. The house call that no longer exists.
In college I went to the college infirmary. The health care fee was covered in our overall tuition which was about $500 a year. My 19-year-old skiing accident where I banged up my knee was ignored and over a few weeks I healed. I developed arthritis in that knee in my 40s. (Life lesson…if you get hurt, even if you are young and can heal well, go get help to make sure you are healing correctly.)
My first job after college was for the State of Tennessee in Nashville. I really do not remember the insurance plan provided but it would have been a large group of state employees. I didn’t see the doctor at all except my annual checks for health and I ended up with a minor surgery. I did not take any medication in those days. I don’t remember the fees but I do remember there was no stress in paying even though I was making about $6,000 a year.
I changed jobs and moved to Memphis a few years later and in the course of the move, hurt my back. My new insurance was through my company and even though the injury happened before my first day of work, there was no waiting period. I saw a chiropractor a few times and then an orthopedic specialist for a year before opting for surgery. There were no MRIs in those days and I was in the hospital for 4 days. My portion of the bill was under $100. I also started allergy shots again while living there and paid $1 per shot.
I ended up a few years later in Connecticut. My husband worked and had Blue Cross through his employer. He needed counseling and later a short hospitalization. I started taking blood pressure medication. We had two babies (one by c-section). One baby needed a couple of surgeries. Our copays for medicine were $1. The hospital bills were $500 for the c-section, $300 for the next delivery VBAC, and the other surgeries were about $300 each.
That husband and I split and I was able to pick up coverage for a Kaiser Permanente HMO plan through a small business group. I paid $400 a month for a family plan which included my two kids and me, and later, a new husband. It had no copays nor prescription costs. I fell and hurt my back again. Again I saw a chiropractor for a while and then he referred me to an orthopedic surgeon. Still no MRI in those days. The hospital stay was 2 days and I think my bill was about $700. I later had a miscarriage and the D&C cost nothing since it was done in the office. My last baby was born in the same hospital as the first, 11 years before but was also a VBAC and cost about $500.
Then I moved back to Nashville and my husband started working for the State of Tennessee and we had HMO plan through Aetna. Prescriptions were $2 or $5 each. Doctor visits to our primary physician were free. Specialists were more and this was when things started getting really interesting since my husband was soon diagnosed with brain cancer. We were sent for a C-Scan one day and then an MRI the next. The specialist at Vanderbilt Medical Center ran a kazillion tests to determine where the tumor was located and the potential effect removal would have. Surgery was scheduled and became the day my life seriously changed as he had the equivalent of a stroke on the operating table and was not expected to survive. But he made it through the night, improved in fits and starts in 8 weeks in the ICU, another 2 weeks in a regular room and then home. Physical therapy was provided at home for a few sessions and then we went to the clinic for that. I understood the coverage for physical therapy, occupational therapy and speech therapy was for 5 weeks. The clinic suggested visits twice a week. We asked for and went daily every weekday of those 5 weeks. At that point he had improved enough that they wanted to try the surgery they had had to stop 5 months before. It went well, with 2 weeks in ICU and then home after another week. The bill, when it got to us and I finally figured out the in and out and all around nonsense, was $7500 to us.
(Now, we step aside for a minute. Recognizing that $7500 is an amazingly low bill for all the scans and surgeries and special tests and ICU and medicines, it still was something above and beyond what we could afford. He was the wage earner. I was home with the baby, something both of us had wanted to try to do for a couple of years and I was just starting to look for work when his seizures started. So, we had no income, no savings and we had that $7500 bill and of course all our normal living expenses and rent, utilities, food, car expenses and then I needed migraine medications, I’m sure you can understand why.
At that point I did a few things. First, I called our landlord and asked him if he had a smaller, less expensive place for us to live and he listened to the why of the question, was silent and then said “The last thing you need is to move. Pay me when you can as much as you can and don’t worry about it until then. I am in a position to help you.” That man is one of my life angels. I have used this story whenever I hear anyone talk about how people who are homeless are all drug addicts or drunks and basically did it to themselves. There but for the grace of that wonderful man, we would have been homeless.
I also called and talked to someone at the county level to find out if I qualified for any assistance program for the six months until the social security disability payments kicked in. They said no. The problem was we had a VERY few thousand dollars in our IRAs and they wanted us to use that up before any public assistance would kick in. The fact that it was a temporary need and very little set aside for our future did not work into any equation for help.
Finally, I called the credit card companies. We had 3 cards and each had about $2000 on it. I asked for the cards to be frozen. Basically I would not use them but asked for no interest or penalties. I owed the $6000 but did not want to see it go ridiculously higher when we could not make payments. They refused to work with me.)
So, back to the medical care. Cancer is expensive. We had radiation therapy. We had chemotherapy. And then, something unexpected happened. He did not die. I was told to expect him to not live beyond five years and when all was said and done, it was about 10 years. I had gotten a job after the first round of chemo so we would start having more income. I was lucky to get a job at Vanderbilt Medical Center and later the University. In those days the issue of pre-existing conditions meant that he would have had no medical coverage at all and I would not have had coverage for my blood pressure, allergies and stupid migraines for at least 12 months. But the year before the Democratic Congress had passed a law that any employer with more than 100 employees would offer health plans with no pre-existing conditions limitations.
So on we went. The plan each year at Vanderbilt changed. Sometimes it was strongly limited to Vanderbilt with very low fees inside that medical center and higher rates outside. No big deal to us since we were relatively new to town, but it caused messes for people who had relationships with doctors outside the system. One year it was equal inside and outside the medical center. I had sinus surgery that year at a different hospital. By that time my share of our medical bills were topping $15,000. Still not a ridiculously high price but too high for us.
I went to talk to a debt counselor. After hearing my story he got up and shut the door and said they were not supposed to suggest bankruptcy but our situation was exactly the reason the law was there. I refused. Maybe not my wisest decision but I felt we owed all we owed except for the stupid interest and penalties for the three credit cards. He suggested if I chose bankruptcy my credit would be okay in seven years. I still said no. I felt morally obligated to pay my bills. I just needed help getting them reduced or a time payment plan set up.
And on it went. About eight and a half years into the illness my husband could no longer stay home safely by himself. The option of me quitting working was not feasible, so we needed to find a nursing home for his care. The one that had a bed at the time was my third choice. The top two had a medical director that was our primary care physician so I thought the continuity with the same practitioner would be beneficial. But they had no beds, so he went to #3. It was fine, as those kind of places go, but week after week he “failed” the test to be able to become a Medicaid patient. He could put the pills in his mouth and swallow them when they were handed to him. He could dress himself in two hours when the clothes were given to him. He could still manage to shuffle to the bathroom. But the time came when he couldn’t do enough of the things on the checklist and so, became eligible. All bills were sent to Medicaid. The nursing home had a fire three days later and 13 patients died. (The story of that night is for another time.) Ironically, my husband got transferred to one of the places we wanted. Once Medicaid took over, I had no more additional costs for him. We stopped taking him for MRIs when it needed to be by ambulance and really, why bother after a while. Hospice got involved and visited him three times a week to provide supplemental care issues.
I stayed at Vanderbilt another 18 months after he died. By that time I had moved to the university side of Vanderbilt and was voted to the Staff Council. My project was to track the amount we shared in our paychecks to pay for our medical insurance (and parking) each year (the payroll deduction increased about 10% annually) while noting our raises each year (about 5%). While I appreciated the benefits, I wanted people to realize that we were slipping backwards all the time. I quit the Council when I was told to stop; that the administration did not want that kind of information shared with the staff who could not figure it out themselves. Meanwhile, Graham, who I had met online in a chat room about 8 years before, asked me to marry him and have my youngest and me join him. He was teaching at a state university in West Virginia, so had a health insurance plan through the state. He was able to add my son as a dependent pretty quickly but I paid COBRA until we got married.
The new plan was challenging. It was a more standard system with copays and deductibles that had to be met and with a cap on lifetime use. Having been exposed to the world of cancer I knew sometimes patients ran into the lifetime limit and care ended, with death soon after. It was horrific to watch knowing a maintenance dose could keep a person alive longer with a decent quality of life. I started allergy treatments again as my sinuses and lungs were getting horribly affected with the pollution in the Ohio River Valley. We had no dental care coverage, minimal eye health coverage, and limited options for specialists because West Virginia is one of those places in the nation that just does not have all the choices other places do.
And then the young one left for college. We had to take out an insurance policy of about $1000 a year on top of all his tuition and fees and room and board for him to access the medical care on campus. Then Graham retired and we made our move to Oregon. Graham had enrolled in Medicare and the first problem we had was there were no primary care doctors in our town who were taking new Medicare patients. I paid $500 a month for a COBRA plan from the State of West Virginia when the Supreme Court ruling on the Affordable Care Act allowed implementation. I was pleased because the time limit for COBRA was going to run out before I became old enough for Medicare.
Working with someone trained in all the offerings, I selected a plan that was good and did not cost “much” It was $550 a month just for me. Since our rate was based on the prior year’s income and we had now retired, we resubmitted about 4 months later with our current income. We wanted to find something in the $350 a month range but instead they enrolled me in the Oregon Health Plan, the expanded Medicaid offering.
I was concerned that I would not get adequate care but was extremely surprised and pleased for the most part. The one issue where the specialist decided not to order an MRI when I injured my arthritic knee (“You have arthritis” he said. “I know,” I answered, ” but it feels different and I can’t walk right.”) and told me to go home. Otherwise, the clinic was friendly, competent and ON TIME.
Last September it was time to re-enroll and our joint income was $200 a month too high to qualify for the same plan, so I had to go back out to the Marketplace and found something for $530. And OHP dropped me in September but I could not pick up the new plan until January 1. I went three months without my breathing meds ($1000 out of pocket per month) and that set me back to a 20% lung function rating. It will take me about three months to climb back to something better. I have copays and a deductible of $2500. I’m partway there….got that MRI for the knee and that cost me over $700 out of picket because I am working down my deductible.
So, the point here was not to bitch and moan. The point is to show that health insurance has ALWAYS been confusing and ALWAYS has been inaccessible to a large group of the American public. Prices ALWAYS go up. Benefits ALWAYS go down.
But I sure enjoyed the Medicaid plan. I would be willing to pay an affordable monthly fee for a plan that allowed me to get care without any copays or deductibles or lifetime limits. THAT was a joy.
Do you even remember covering how socialism works in high school? Probably not.
But you will have that knee-jerk reaction when it is mentioned by the talking heads using a low ominous voice
You like scary movies so you know that voice means something horrific is about to happen.
So, let’s go basic. VERY basic.
There are, to simplify things, 3 kinds of ECONOMIC systems. (See, I said economic, not political?????)
1. CAPITALISM (yeah! hooray! this is us so it MUST be the best way!!) Okay, stop hollering and read just a moment to understand: In a free market system like capitalism, you have the right to open any business you want. You must abide by laws in place and get any licenses and certifications required, but it is up to you to plan to see if your investment will bring you the return you want. You can also work in whatever job you like. Finally, you can, despite what your mother says, move to a better location to find that work or that business opportunity in a location where you can make ends meet and achieve that “pursuit of happiness” so offered to us Americans.
There are, of course, some down sides. For example, it was because of Upton Sinclair’s The Junglethat the government rules about meat packing were started. It seems that some people, whether the own a factory making widgets paying their workers $15 a day and selling them for $15 each or a corporation that declares bankruptcy instead of taking responsibility when chemicals leak into a water source for over 300,000 people here in the United States, some people who are wonderful capitalists are not very good people. You can not legislate morals. One of the problems with this system is that not all Americans have equal access to opportunities. And it has been proven that trickle down economics does not work. And also that sleazy people with good opportunities to get rich are still sleazy people.
2. SOCIALISM (sound of scary music) Turn the soundtrack off and quit being a pansy of special effects. With a socialist economic system many of the major businesses are owned by the government. It is not impossible but very difficult to open a private business and their regulations make ours look like kindergarten rules. Profits are lower not because consumerism is low but because the government takes a larger chunk of the business income. You may chose your own profession but you may also be directed to study something where you either show an early skill or the government has a need for workers. You tend not to move, not because you adore your mother, but because the availability of housing is restricted and the concept of mortgages is not typical.
3. COMMUNISM (heavy stomping feet with this one indicting the monster is approaching) (Also can be confused with TOTALITARIANISM but again, we are talking economic systems here not political systems.) We got involved in a war in VietNam to stop the spread of Communism. Hmmm, that didn’t work so well. Let’s try to understand why. With this system there is little if any outward show of personal freedom. That REALLY irks us. Income levels are very low and people are dependent on government programs for education, medicine, housing and more. Sounds horrific. But interesting enough, I was chatting quite a bit with a physicist (highly educated) in Russia for about 10 years. He actually MISSED the safety net the old system had offered. Now, with the end of communism, there were a lot of people who were on the street, without housing, without food. More crime. Now, we Americans were indoctrinated that the USSR was the worst place on earth to live. The lack of personal freedom certainly made it a horrible comparison. Even with the new freedom, when I suggested he find a 2 bedroom apartment when he and his wife had their first baby, he was unable to do so. The concept was too difficult to communicate. Even though his English was amazing, the lack of understanding on the freedom to move could not be overcome.
The slogan “from each according to his abilities to each according to his means” is a scary concept for us here in the US. The people who have managed to be successful, to rise to the top and are managing fine in this economy, are scared that any change will mean they will lose…lose what they feel they have earned. Meanwhile, there are many many people working several part time minimal wage jobs who are not able to feed their families, keep them in safe housing, and feel they are falling behind. They are the ones who might find the safety net, as my Russian friend called it, a possibly attractive situation….except for the loss of freedom.
Okay, that gives a very basic review. Now, let’s look at the health insurance system to see where the Affordable Healthcare Act falls because so many people scream in anguish “This is SOCIALISM!!!!” Let’s see.
Back in 2008 we were lucky to take a trip to the United Kingdom when Graham was invited to give a talk at a professional conference. We made it a wonderful vacation, exploring a small part of England and into Scotland. It was in Glasgow, while Sam was running with a kid his age, that I got to talk to that boy’s mom and learned about the health system in place in the UK. That mom is a general practitioner and works in one of the neighborhood clinics that are located to serve a certain size population cluster. She said people in the neighborhood can go to another clinic, but most go to the nearby one for convenience and she likes it as she gets to know people who know each other and can be supportive to each other.
She is the equivalent of my PCP (primary care physician), someone who is a generalist specializing in internal medicine or family practice or some such. She has the ability, she said, to take care of almost 90% of her patients’ needs and then refers the others to specialists. These specialists may be in her clinic or in a clinic nearby. Waiting time to see the specialist tends to be within a few days or a couple of weeks maximum.
She said the patients do not pay to see her. They do make appointments but there are always some walk-ins each day. She said many, especially the older people living alone, may really have nothing medically necessary to see the doc, but just need some time to be with someone. In other words, she also performs a bit of some gentle compassionate care in the realm of psychiatric counseling.
This doctor said she will never make a lot of money. She will not have a second home at the coast, or a boat or take wonderfully exotic vacations. She said she is honored to have chosen to work in this field and feels very satisfied with her work and her compensation.
This is a government system. There are similar ones throughout Europe, in Canada and in other nations around the world. How is it that a friend I have living in Croatia can get a crown for one of her teeth for under $200 but I need to pay over $1000? How is it that medicine in Canada costs 10% of some of the prices here?
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We have a capitalistic economic system with large corporations, not the government, seemingly in control in many areas. The pharmaceutical companies work long years to develop medicines which the FDA reviews. Some turn out to be good. Some like the fat-blocker I so eagerly took in the early 1990s are later found to cause big problems but got pushed through the approval process because the pharmaceutical companies said they were okay. The insurance companies worked hard in Congress to make sure that the Affordable Healthcare Act was written so they would manage to keep on making huge profits and we would not have a unified government run system.
This is not socialism, people. This is capitalism at its…….well, finest is not the word I would use, but the one I want to use is not polite.
Universal healthcare coverage in the United States is NOT socialized medicine. Don’t swallow your brains with your saliva when your favorite talking head pulls out the scary music please. I hope you take this and before you refute it because of its simplicity, do some research of your own and then educate us if you feel differently.
This story is for those of you who really hate the concept of universal healthcare:
My last job working full time was for a financial adviser. It was a small business and did not offer many benefits, including health insurance. But that was okay, because my husband had the state employee’s insurance plan through his job at Marshall University. It was restrictive outside of West Virginia. For example, he needed an eye surgery and the best care was in Kentucky. Living right on the Kentucky line, we chose to pay more than drive further to Morgantown.
Once he retired, we fully expected my health coverage would end immediately and were pleased I could pay fully for coverage to continue for two years. As expensive as that option was, it would give me some time to find something else once we moved to Oregon. And I was happy it was coverage by Aetna. I had lived in Hartford for many years and felt that company had good policies and attitudes.
When the Affordable Healthcare Act was passed into law by Congress and approved by the Supreme Court, I was relieved that I did not need to find another 9-5 job with a large company or the state government to get insurance, as all those jobs were an hour away. I started looking into the Cover Oregon plans and determined I would save $100 a month once enrolled.
Meanwhile, using my post-retirement West Virginia insurance, I started establishing relationships with new medical care and filling my prescriptions at the local pharmacy.
Until yesterday, when I went to pick up a refilled prescription and a new medicine that my new doc felt was necessary to replace one causing some blood chemistry issue. The pharmacy told us that our insurance had dropped us. Said they had dropped Graham so they had dropped me. But Graham, being on Medicare now, had never been enrolled. Just me.
We have received no communication from this insurance company. It was past 4:30 eastern time so have to get through the weekend and then we will call on Monday. We paid cash for the medications, thankful they were generics and only double and triple the cost we were used to paying.
This is the way insurance companies act. And now, we will have to fight for the coverage we were told would be offered for two years.
Having lived through Dave’s long fight with cancer, I know very well first hand that often people who are ill, or dealing with someone who is very ill, have no spare energy to fight battles like this. But this is the way our current healthcare coverage system has existed for years. I often had to fight for the promised coverage.