April 2018

Wednesday, October 17, 2012

This election’s personal

My neurosurgery, not counting the cost of doctors' salaries, etc. was half a million dollars. (I’m not sure what was counted and what's etc: the cost of the room and the equipment were counted. Other stuff, I’m sure.)

That half a million dollars also doesn't count post-surgery treatment for a month in the hospital, home health care after that, treatment for pneumonia and the swine flu, MRIs before and after and ever since, ongoing medications, radiation for a second tumor, and on and on.

I am lucky. I've had regular medical care throughout my life. I had health care insurance (and still do). I was born in a millennium when lots has been learned about how to do brain surgery and radiation, minimizing the damage and maximizing the possibility of survival (though there's still a lot to learn.)

Though I was a good risk, I've been an expensive patient. Thank heavens I got sick in a time when my health insurance can't cut me off.

I need for this country to elect a president who cares whether or not I have health coverage. Mitt Romney said that the day he is elected, he will destroy Obamacare. He's running for president and not for king, so he can't really do that, but the fact that he wants to makes me concerned about what he might do.

For me, this time, the election's personal. I don’t usually raise the topic of politics, but this is not a usual time. I need for this country to elect Obama, and I’m asking you to vote for him.

This election is personal for my friend Kathy, too, who has breast cancer. Here’s her experience:

This message brought to you by the upcoming election.

Written 10 hours ago by Kathy Paul

Subject matter alert, disclaimer and firm request: This is a post about my personal reasons for supporting health care reform. I'm a Democrat, and plan to vote for the President's re-election. Feel free to stop reading at any time, if you're offended politically or if you just get bored.


Even if you agree with me, I ask that you not use the Guestbook for political comments. If you absolutely must, then be even more respectful of others than you might be otherwise. Murmur quietly, in other words. This isn't Facebook, you know.


There are many reasons that I will be voting for President Obama, just as I did in 2008. Health care reform is only one of those reasons, but it sure is a big one.


Because I know far too many people in the USA don't have health care of any kind, I have carefully followed the progress of what was ultimately approved as the Affordable Care Act. Including fact-checking with neutral sources such as the Congressional Budget office. Even as late as today.


Yes, ACA is flawed. But is it better, for hundreds of thousands of people, than what was there before? Yes.


In general, there are far too many people in this country who receive care, if they get it at all, in emergency rooms. Like when their kids get really sick. Or when someone breaks a bone. Or when they have a major, unexpected illness. There are huge numbers of people who are homeless, not through drink or drugs or irresponsibility, but because one major, unexpected illness caused them to lose their homes.


So I'd like to talk about the effects of major, unexpected illness. My own major, unexpected illness.


I have had medical care since before birth. I have had annual physicals and regular mammograms. Yet, here I sit, with node-positive breast cancer.


Right off the bat, I bought, in rapid succession: a diagnostic mammogram and diagnostic ultrasound. Followed immediately by two radiology-guided biopsies. Also a contrast MRI of both breasts and the left axilla. When spread of the cancer was confirmed in the lymph node, I bought a contrast CT of my chest, abdomen and pelvis, a full-body PET scan, and a full-body bone scan. Each was to detect any spread of cancer in certain areas or organs or bones. No one scan works for every kind of tissue.


Out of breath yet? Google the cost of a full-body PET scan. But sit down first.


The diagnosis/spread now finely tuned by these tests and detailed pathology reports, I bought four and a half months of chemotherapy, mostly weekly, with multiple IV medications and pre-medications each time. Plus the associated weekly labs and doctor visits.


Two additional contrast MRIs happened along the way, checking the progress of the treatment.


Then came pneumonia, a complication of the treatment for the unexpected illness. That bought me a week in the hospital, plus daily visits from two specialists, plus an emergency x-ray and an emergency CT scan, plus daily labs, plus many, many infusions of antibiotics and pain medications.


I will soon have a double mastectomy and an axillary node dissection. That's three separate procedures on one body under the same anesthesia. Lots of pathology slides. I will have several visits to remove my drains... post-op visits... and both pre- and post-OP physical therapy visits to get my range of motion back and teach me how to protect myself from lymphedema, an inflammation of the arm that can happen after all the lymph nodes are removed from your armpit and mess up the lymph drainage in that arm.


Are you counting doctors? We're up to 8. Don't forget my primary care doc, who was there at the beginning. Plus the diagnostic radiologist who did my biopsies. Plus the anesthesiologist for my upcoming surgery. I've lumped all the pathologists and other radiologists in as one person. Oh good grief. I forgot the surgeon who placed my port. And HIS anesthesiologist. That's 10. And hang on, we're not done counting yet.


After I've healed for 3 to 6 weeks, I will have about 6 weeks of radiation treatments. Daily, Monday-Friday. There is a radiation oncologist involved. Mostly I'll see an amazing tech (like my cousin Kathleen).


We're now up to 11 doctors. Plus numerous nurses, nursing assistants, medical assistants, lab technicians, radiation techs, residents, interns and other professionals whose salaries must be built into the hospital or facilities charges.


Last on my personal list of $$$$ is medications that I did not need BBC (Before Breast Cancer). I have a 6x8-inch plastic basket, FULL of pill bottles. Plus some creams. And a brand new inhaler. Most of it is at least partly covered by insurance.


Just a few more things about costs:


Each of my chemo infusions costs between $2400 and $3000+, depending on the meds.


My week of pneumonia, just for being in the room (using nurses, assistants, electricity, plumbing, and stuff that had to get paid for somehow), but not including charges for doctors, lab, medication, tests, etc., cost around $15,000.


I have no earthly idea (yet) what one radiation treatment costs. Recently, someone told me what their 16-week course of Monday-Friday radiation cost, and I was really glad I was already lying down.


On top of that, every time I sit down in the cubicle in the infusion clinic, there is a charge for using that room, just as there will be a per-unit-of-time charge for being operated on in the operating room, and more for recovering in the recovery room and recovering some more in a hospital room for at least one night.


Is any of this fair? No! Being charged for the treatment of any illness, regardless of its severity or duration, is freaking NOT fair.




In this country, we have the facilities and technology for treatment. We depend on those places and that stuff, and it all needs paying for. There's a better formula than the current one, I'm sure.


Our medical practitioners have all gone to school—some many years, even more than a decade if they're a specialist. Many do not start their careers until well into their 30's. Unless they were independently wealthy to begin with, most start out in debt, sometimes massively so. They deserve to be paid. Again, the formulas for all of this are not fair and bear examination.


So... after all this writing and reading and sticker shock, I want to add that I am very lucky.




I have a good health care policy. I want to mention, however, that I pay for it myself. It's not a payroll deduction, either. If you are paying via payroll deduction, go kiss your employer, because they are paying substantially more than you. My insurance premium is my second biggest expense, after the rent. (I'm self-employed, so in addition to paying my own health care premiums, I also pay my own Social Security tax, Medicare taxes and income tax.)


My insurance policy covers a percentage of the cost of my care. It also excludes many things, including most of the cost of the chemo meds. If I didn't have an annual cap on my out of pocket payments, I would never be able to afford this treatment.


Again, just in case you missed it, without insurance, and even then, without the "out of pocket" cap:


I. Would. Never. Be. Able. To. Afford. This. Treatment.


This is why I pay my monthly insurance premium on the same day I pay my rent. Early. After a near miss with a misdirected electronic payment, I actually write the check and I take it to the post office in person.


Cancer is a terrifying disease. Even if you don't have it, you may feel concerned from time to time about cancer. At the very least, you may see someone like me and think, "There but for the grace of God, go I."


Now, about the election. The threat to gut ACA or portions thereof keeps me awake nights. Before ACA, my insurer could have booted me off the policy at any time, because I'd gotten too expensive. Before ACA, any other insurer would have taken look at my "preexisting condition" and stamped my application with: NO FREAKING WAY. For people like me, this has meant a death sentence, even in the very recent past.


So I say, please vote on November 6th. It's a precious privilege we share. But first, please, take a look at anyone you know who has a major illness or chronic condition, and repeat after me: "There but for the grace of God, go I."




1 comment:

  1. When I have the opportunity to talk about this election, I go straight to Medicare. And how I would not be able to manage my disease without it. And since my husband is my full time caregiver, without Social Security disability payment, we would have zero income. So many people _get_ to take their good health for granted. But those of us that need care, we NEED it. And have paid into Social Security all our working lives. Its not like we havent participated. I can only encourage people to help support politicos that can ensure I still receive the benefits I need. And yeah. ITS PERSONAL.


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