I think I am inspired to make a new blog or repurpose this one. Maybe it will turn into a new book that very few people will read! Nah, it would be far too depressing. It wouldn’t do to write it without doing a lot of research and the research would be difficult because the subject is wide ranging and has no clear beginning or end. It just unravels endlessly like some gigantic ball of yarn made of bureaucratic, red, string.
I just read a statistic today that the U.S. is no longer one of the top 20 happiest countries in the world. Ha! I wonder why? Could it be because we cannot afford basic health care and our life expectancy as a nation is suffering as a result? Look, I realize that I am very privileged. I have an income at one of the highest brackets in the U.S. and I have had good, commercial insurance through my husband’s jobs all through the years that I have been sick. But, on Feb. 1 we switched to a new company when he switched to a new job and everything just hit the fan.
The cost of providing health care to employees has gone up for employers and employees alike. Each and every year we have felt the squeeze. Our premiums have risen. The cost for prescriptions has risen. The number of calls I have to make to get access to my expensive drug treatments has gone up and most insurance companies put up roadblocks of some kind or another trying to make sure I really have to have the medication. Of course they don’t want to pay for it! I am their worse nightmare! But, after a number of phone calls and some manuevering I am usually able to get what I need. This time it is different. There is a new way for insurance companies to organize themselves such that they can skirt the law. They do not have to cover my infusion medication at all. Without this medication, I get even more infections and I have even more difficulty fighting them successfully.
So, I have been very proactive in trying to find a way to get my medication. I do not take no for an answer when it comes to my own existence. I am not going to let them tell me, “too bad you just have to go without… we are really sorry.” No. I have been on the phone and online for days and weeks and hours trying to figure things out. This is taxing and demoralizing. It is hard not to take it personally sometimes. Yet, I know it is not personal. It is a business decision. It is about money. The people who make money from commercial health insurance are not altruistic. They are in it for the profit. That, in itself, is a problem. Somehow, those two things should not go together. It doesn’t really make sense.
Let me be more explicit. My infusion medication, the one causing me the most difficulty to obtain, costs $10k a month. I have been on it, either through infusion through IV at a facility, or like I do now, through subcutaneous infusion at home, for about twenty years, with a couple of breaks. During those breaks, I was really sick. I also take several other medications that most insurance companies want a “prior authorization” for. That means the doctor has to go through a lot of paperwork to explain and justify to non-doctors why I should have a more expensive medication and they should have to pay for it.
So, the upshot of this currently is that : 1. Am completely unable to get my infusions paid for AT ALL by our current health insurance. 2. I have been going back and forth with them over numerous medications they don’t want to pay for and am down to one that I have not had access to in more than a month and they will not accept the doctor’s phone call. 3. I cannot see one of my doctors anymore and need to find a new one. .. (which isn’t unusual). 4. This is our fourth insurance change in 15 mos.
Where I am with all of this: I have signed up for a program with the manufacturer of my infusion medication and have just received my second months’ worth of free medication while I work on another avenue for insurance. Fortunately, God is good and another avenue has opened up a way forward. I am going on Medicare even though I am not old enough:). I qualify, it turns out, because I am on disability. But, it is not easy to get it going. I have been trying to fulfill the paperwork requirements for weeks and there is always another bump. I am not there yet and I have now heard that it may take months to get my application through even though I am technically already on part of Medicare; part A.
So, where am I really with all of this? Why am I here? I am here because I am… disabled. There it is folks. That is the word I hate to even utter to myself but it has been staring me in the face and screaming my name ever since last June when I got so damned sick. Well, really it started a year ago in March of ’23 when I first got pneumonia. It feels like my carefully constructed version of myself as a functional human has been blown to hell.
The thing is: I was never all that functional. I think that is what bothers me the most. I knew things were precarious. I knew I had no control. I knew my exercise routine and my energy levels and my constant fight with fatigue and pain, which I try to ignore, were the tip of the iceberg. Now it feels like the ship has run aground and is taking on water.
At the same time I have been sick, hospitalized for pneumonia three times, kidnedy infection and Covid, I have come up against this insurance behemoth. It feels symbolic somehow. It feels so very personal. It is like the insurance people are saying, “You are too expensive. Why don’t you just go die already?”
Yes. That is exactly how it feels.
And my answer is always the same defiant: FUCK YOU!
So I fight and I go and I call and sit on the phone and I spend hours and hours trying to find a way to get my medication and yet, by God…. I am weary.
And speaking of God…. I sometimes wonder. Where in the world is She?
But if I take the time, I can find Her/They/Them.
They are never very far.
They are always waiting for me in the music. And on that note
(ha, see what I did there?)
I’ll end.
Praise God for the energy to say, Fuck You to the insurance companies and all they represent. May they rot in hell.