Sorry for mixing my Broadway musical metaphors but I need your two cents because, like Tevye, I’m getting a lot of On The Other Hand in my decision making.
Back in January I wrote about my experience with six decades of wading through medical care with all its various changes. (I wrote that blog to help people who might not understand why the ACA is so important to people who have difficulty obtaining health care that can be within financial reach. Many of the comments I received were that people were sad I had gone through all that. The point was, many many many people do.) And even as I wrote of all my issues, that was before my left hip started protesting loudly the year plus of walking “wonky” with my bad right knee. After a gait adjusted for pain, my pelvis had tilted. It wasn’t enough to juggle the stupid knee and then the cornea transplant, I had a new medical issue that provided a new education. Lucky me.
The increased level of pain led me to think I would have to close my business, Can-Do Real Food, My logic said that was the right decision. My emotions were not in agreement. (You can see how Tevye’s dilemma discussion seems to be part of my DNA, or at least cultural norm.)
My regular doctor offered me pain pills. While I filled the prescription for the muscle relaxant, I soon discovered not only did it not work, but neither could I with a muddy head. I decided to go outside of standard medical practice and found a chiropractor who might help move that pelvis back into alignment. Between his gentle pokes and prods as well as physical therapy inside his office environment, the screaming pain has diminished and I can see a glimmer of dim light ahead.
But then I ran out of insurance benefits.
The chiropractor reminded me it had taken me a year to get into the twisted position and it would take a while longer to get out of it. His thinking was once I got that part aligned I would be functional and need only pop back in to see him when I realized I was hurting again.
But I can’t afford him.
So, back to my primary care doctor who offered to send me to the same doc who said my original injury to my knee in June 2016 was “only arthritis” and “I would never need surgery”, all without the benefit of a scan. I told my primary doc I would not go back to him. I expect my doctors to base their advice on information and avoid those who don’t.
Also, since I’ve been hearing I have arthritis for years now and the pain is increasing in the affected joints, I asked to speak to someone with arthritis expertise to give me advice. Turns out that specialization is a rhemolotolgist and the first clinic said I was not bad enough to take up their time and the second clinic gave me their first available appointment four months from now. Since I don’t have rheumatoid arthritis it is perhaps not a needed visit anyway, but it sure would be nice to get some better info.
Yesterday I had an appointment with a new orthopedic doc. I went in wanting info, very much convinced I am not a surgical candidate nor is my knee hurting that badly right now so why would I want surgery?
He convinced me I need to have the surgery. The pelvis will NEVER be right until I am walking more normally. My knee will never be better and will only get worse. I wanted to know the probably progression of the deterioration and he was able to take the time and explain it.
So, straddling the conventional/nontraditional medicine routes gets sticky when I opt to lean one way or the other; the other side of my care spectrum voices their concerns. Some are valid. Some may be self-serving.
Here are the issues of my dilemma:
My insurance will be changing. I have received notice that the plan I currently have is not going to be offered. The next “best” plan not only will cost me almost $300 a month more, but will not provide for any “out of network” benefits. Since I am not always only in my town, I understand that even a day trip to the Coast with some level of accident could end up bankrupting me. So this next “best” option is not viable. I have an appointment with an insurance navigator next week when the markets open, so we will see what we will see then.
Since my insurance will be changing, any additional help beyond the immediate post-operative period by this new doctor may be a financial hardship. Do I wait to chose a new orthopedic doctor after my insurance changes, pushing me into a later calendar schedule for the surgery and recovery during my busy season with Can-Do Real Food (no, I’m not closing the business). Or do I just hope he is “in network”? Or do I just hope I can switch to another ortho doc who is “in network”?
Will I even be able to afford any health insurance plan next year? Since Trump has eliminated the subsidies, that means my health insurance premium will most likely take up 60% of my social security payment. That is before I actually go to the doctor and pay my co-pay and pay for all the medicines I need for my asthma and blood pressure. How can I afford this?
And then, on the nontraditional side,
I learned on my trip to New England that the CBD portion of marijuana does an extremely effective job of reducing my pain without making my head affected. (It amazes me how many conventional medical people I have spoken with HERE IN OREGON seem not to know anything about the usefulness of this herb. But here, have some oxy. The restrictions by the Federal government have muzzled them at best and stunted their education at worst.)
My knee pain is very tolerable right now. My hip/pelvis problem is moving in the right direction. I can still get more physical therapy and of course I have the exercises to do at home. If I do them…..but that’s another issue.
The new ortho doc said something that sounds real: “Many people opt to wait because they are not feeling “that bad”. And then something happens and they are in horrible pain, wanting the surgery and then needing to wait a month or two to fit into the schedule.”
And he also said “Most likely you will heal better and faster than someone who is in high pain prior to the surgery because you are still pretty mobile.”
We have mundane but real issues also.
I will be restricted from driving, of course, for a while. Typical is 6 weeks but it could be shorter if I can comfortably and in good time move my right foot from the accelerator to the brake sooner. Graham, being legally blind, can not drive. So while we are going into our quiet season with the business, there are normal things we do: grocery shopping for example. Also Graham teaches one forensic chemistry class each week at Western Oregon University, about 40 minutes south of where we live. So, we will need driving help. We have many good friends who offered with my eye surgery and that was only needed for two days, so we haven’t abused them too much yet.
Sleeping spaces. The master bedroom is upstairs. I have been sleeping in the guest room, a room too small to transition permanently into the master bedroom, for months now, only climbing the stairs when we have overnight guests. Following this surgery any guests will get the master upstairs. That part was easy enough to figure out. LOL
So, like the King of Siam, it is a puzzlement to me. A time of change is upon me. A decision needs to be made that will have consequences. Those issues, with the exception of the health insurance costs, are not easily quantifiable.
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.