Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Monday, April 20, 2009

Oppressive Means. . .

Oppressive means, according to Merriam Webster, unreasonably burdensome or severe; overwhelming to the spirit or senses.
I’ve been looking for this word.
I forgot it existed.
I feel oppressed.
The current health care system in America is oppressive.
I try and try and try. I do the best I can. I’m still just treading water.
Then, when I’m down and out with pneumonia and need 6 weeks to recover, I’m flooded with bills. I’m flooded with phone calls and applications to again prove I am sick.
If I do not comply with the demands, I will lose my livelihood, even if the reason I can’t comply is that I can’t even roll over to answer the phone or I can’t breathe or stay awake long enough to meet their criteria to prove I’m sick.
My family is threatened with bankruptcy. We could lose our insurance. We could lose our home. We could have our income sanctioned and taken before we ever see it.
Then, how are we supposed to eat?
Then, how am I supposed to afford the medications I need to survive?
I feel unreasonably burdened.
I feel bullied.
I feel some of these occur on purpose to make it difficult to maintain the services I need.
I’m expensive. No insurance company is going to get a return on investment (ROI) on me. I am a very bad business investment.
Here is the latest in irritating oppressive bullying.
I received a phone call from a representative of my insurance company.
They asked if I would switch my antidepressant to one that was basically the same, very similar in structure.
I was sick. They woke me up in the middle of my nap. I wanted them off the phone and to stop bothering me when I was trying to get better.
I said sure, whatever.
Later that week, when I saw Melissa at Dana Farber, she informed me my insurance company wanted to change my lexapro to celexa.
WHAT?! These are not the same. They are both in the same family (SSRIs) of antidepressants, but they are definitely not the same in structure.
Each medication is different in structure. Each has their own potential rare side effects.
The insurance company had tricked me, even with all my education, because they asked me when I was too sick and tired to fight!
I know these drugs are not the same, I used to take Zoloft, which is in the same SSRI family.
It gave me heart burn so severe I couldn’t eat. I would lay by the toilet and force myself to throw up to relieve the pressure.
It had a severe, nasty, painful interaction with my cancer.
I’m not taking the risk that could happen because some insurance company has a deal to get celexa cheaper than lexapro.
But the damage has been done.
My insurance company wants me to change.
When I went to the pharmacy to fill my prescription, my co-pay for the lexapro was $50!
I usually pay $10.
If I refuse to comply with the insurance company’s demands, they make the medication unaffordable.
That certainly “overwhelms my spirit and senses.” Actually, it entirely offends my sensibilities.
I don’t think anybody reading this is going to debate I need anti-depressants.
I, personally, think everyone with a diagnosis of cancer should receive them immediately as a standard of care.
However, I have spent 2.5 million in health care costs to survive and I still have to fight over which antidepressant to take!
Can’t I suffer in peace?
Is this some sick joke? Is this one of those “misery loves company” examples.
These hassles are certainly making me irritable.
What I also despise is that the people delivering the bad news, the Doctors, Nurse Practitioners, the technicians at the pharmacy that have to notify me the insurance jacked up the price, so often get the wrath.
Don’t kill the messengers, but who else can you blame? Especially, if you are too sick to simultaneously fight your disease and feed your children.
There is also the threat that if someone makes too many complaints the insurance company can stop services. You can be dropped as a patient.
I’m at least to the point where I dare them to. They can go ahead.
I would throw a bigger public hissy fit (or Hillary fit) than I am throwing right now.
Here is the basic message I am receiving: comply with our demands, our paperwork, our changes in your medication, or else we will make your treatment unaffordable, we will drop you as a patient completely, you will lose your monthly disability check, your medical bills will be too high to pay, then we will place a lien on your home and everything else you own and threaten to take that so you can have cancer, be homeless, and chose between healthcare or starving.
It’s your choice.
I don’t really feel like I have much of a choice. My house, food, an income, healthcare, those are all needs.
They are protected under my civil rights. I have the right to live.
It’s being interfered with and I don’t like it.
I feel oppressed.

1 comment:

Jessie O said...

The clinic where I went for my first consultation of my tumor isn't on my insurance's radar... even though I found the provider through their website. They recognize the DOCTOR, but not the billing CLINIC and therefore won't pay in network. Scammed. Jerks. Keep fighting the good fight. Change is coming even it's just global anarchy.