Friendly neighborhood sick person weighs in on health care debate.

Friendly neighborhood sick person weighs in on health care debate.

When I used to freak out about losing my health insurance/access to care, not being able to afford medicine, I always pictured my parents losing their house to pay my medical bills. It was the greatest loss imaginable. In the past months my catastrophizing has changed. Now, my mother won’t sell her home, cash out her retirement. I fantasize about dying from lack of care. If my cancer comes back, if I can’t keep my job, if I lose my insurance and I can’t afford to get treatment–I won’t seek care. I’ll die of my illness.

If anyone every told you I’m stubborn they weren’t lying. I’ll cut off my nose to spite my face. Kill myself to spite the healthcare industry. I indulge this fantasy of martyrdom to my hard-hearted country.

I need to express the psychic weight that the debate over who deserves what coverage burdens me with. Watching the monetary value of my continued American existence bandied back and forth just a few miles from where I live. Doing battle for this prize: to snatch survival resources out from under my kind. I cost healthy people too much. My debility or poverty disqualifies me, abdicates rights I thought were mine… life, liberty, something else… but yea, life. Not that.

In my hospital we have special education high school students working as volunteer helpers. Not everyone welcomes them. They are different people and require a slight adjustment in communication. They require accommodation.

They came to the hospital to work with assistance of a career coach and the support of our unit manager. They are kind and interesting, alike to most young people. Tremendously helpful, alike to most young people. Restocking supplies, lending a hand to grab a wheelchair or a drink for a patient, going to the waiting room to track down someone’s elderly family member who won’t answer a cell phone. They complete tasks that keep everyone in the unit moving forward. Days that I’m swamped, they keep me afloat.

The myth of the productive citizen baffles me. I’ve met a lot of people. Strangers coming out of anesthesia tell me dark secrets. No one conforms, not all the time. We are a big interdependent mess. To define productive and make it the measure of value is a terrible effing idea. This ideal, of a completely independent working class American is at the core of the repulsive rhetoric I see daily.

What we are capable of is influenced by what we are told we are capable of. This political dialogue, the demoralizing debate over who is worthy of access to care, corrodes the potential in groups that have renewed American greatness again and again. The striving poor, immigrant, person of color, victim of circumstance. The young. Mounting arguments to deny the very poorest, the sickest, the youngest among us the scan safety net of Medicaid and strip us of legal protection to not be discriminated against due to sex and preexisting conditions, is undeniably passing judgement on who deserves healthcare. These groups of people, my people, have no chance to acquire health insurance without the protections set in place by Medicaid and the Affordable Care Act. To be without insurance is to be without access to care. The message is this: you are uncared for. To be perfectly clear, you are left for dead.

This is deeply personal. The abandonment of my cause, my cause being the pursuit of a productive and healthy life, by so many of my fellow Americans. My president, my representatives.

Since my diagnosis at age seventeen I kept my lupus a secret from most. A learned behavior from my father who shared the same diagnosis. He came of age in this country, a sick person in a time before the Americans with Disabilities Act. The fear of being found out, losing out on educational opportunities, jobs, insurance.

I lied on my college applications. I lied on my job applications. I’m not sure if you’ve noticed, but there is a box to check for “I may require reasonable accommodations” i.e.–I have a disability. NOPE. Nope. Per dad’s advice, cross that bridge if you come to it. You don’t need accommodation. You can pass. My skin is white and I can pass for healthy. I’ve never had trouble getting a job.

But I was ashamed. Sneaking around in the shadows will do that to a body. Fearful of being judged as burdensome. A waste of the world’s resources.

To experience the birth of the Affordable Care Act and its protections after a labor so long and fraught, was elation. Immense validation. I was hearing from the highest office in the land that my worth, my potential, was not degraded by chronic illness. It’s no coincidence that it was in those heady days I returned to school and became a nurse. I chose a challenging career in a field of service. I was pushed, encouraged to dedicate myself to progress personal and political. In no small part because of the leaders of my country put all the chips on the table to codify the belief that health care is a human right.

Since the ACA passed, I’ve checked the “accommodations” box. When I go to an appointment, I don’t lie. My coworkers no longer think I am hitting the dentist’s office monthly. I can pass, but I need everyone to know what a disability looks like. Which is, in my opinion, human. The messages that came from President Obama, from my representation, from advocacy groups all over the land made me feel like it was okay to exist as I am.

Permission to exist is a powerful thing. It isn’t hyperbole to say that the Affordable Care Act is my own civil rights legislation.

It despairs me to hang on as the pendulum swings against it. But hold on, it matters. Keep saying it, no matter how ridiculous it feels to say, children and women and the sick and the elderly all deserve equal protection under the law. Our nation, and me, well… our lives depend on it.

PS- Somebody make me a bumper sticker that says “KEEP YOUR HANDS OFF MY OBAMACARE”

A few words mustered on AHCA

A few words mustered on AHCA

I want to credit the journalists, academics, and my fellow healthcare providers who continue to write in this inhospitable-to-truths environment. I don’t know how you do it.

I’m hotter than a billy goat in a pepper patch. I can’t put it together. I can barely speak.

On this blog I’ve made the turn from facts to feelings in the last 100+ days, likely because facts seem to have suffered a fatal blow in this unrecognizable version of the world.

Here’s my feeling: I just left CancerCon (post in process), a group of many hundred sparkling, talented, mutually supportive young adults with cancer. Every last one of them contributing and (this is my bottom line) not any less human than before they got sick. THROUGH NO FAULT OF THEIR OWN. I’m one of those hundreds.

The Affordable Care Act was my civil rights legislation. Its “replacement” is the repeal of my and my legion of patients hard fought and nightly worried over civil rights. To adequate care. To freedom from unnecessary physical suffering and premature death and disability. Freedom from fear of sinking ourselves and those who love us into destitution to pay for our care. That’s all I have for now.

Am I less than my healthy counterpart? Is my humanity so easily disregarded by my country?

Trauma story

Trauma story

I just visited with a teacher friend who was telling me about his adamant opposition the the ad-hoc trauma counseling the public schools are asking teachers to perform on their at-risk students.

“First we have to sit in a big circle,” he tells me.

“Stop. No no no no sir. Not a circle. There is no safe place in a circle of peers.” I say.

Trauma is the flavor of the DSM V. Who isn’t talking about trauma? We’re all a bunch of traumatized zombies walking around, unstoppable force, inflicting and receiving trauma. Unable to zombie stumble ourselves into an effective treatment for our trauma on trauma on trauma.

Maybe trauma is the flavor of the century. This thing that was never really a thing in centuries past. Before, it was as inherent to living as breathing. Unremarkable. It starts to make itself known in the Western World after the great wars. Life settles, the middle class thrives, and a coherent nuclear family of two heterosexual parents and 2.5 kids emerges. Vaccines keep children from dying, sterile technique and antibiotics extend the lives of their parents. Union strength brings forth OSHA and safer workplaces, risky agricultural labor is given to 6-lane-highway sized air-conditioned combines, and the quagmire land wars in Asia make conscription a political nuh uh. The twentieth century American person is now safe. Safe enough for a man to concern himself with the perilous moments he has lived through. And now we live in enough comfort to reflect ourselves awake all night.

 

I’m flashing back to my greatest lesson in trauma. One I’ve written about before. Part of the advantage of having experienced the bulk of traumatic life events in short sequence as a full grown adult is your ability to remember them. Half of me records the events and their aftermath, the other experiences them. I’ll tell you my two big takeaways when it comes to managing life’s garbage:

  1. Trauma is not concrete. It is a thing perceived. You can live through an act of terror, loss of a loved one, life-threatening diagnosis, and come out the other side a well-adjusted and intact human. Maybe even more grateful, more god loving, closer to family, any positive thing. But like a kid with a skinned knee who doesn’t know to cry until he sees the panic on his mother’s face, being forced to re-tell your story to “debrief” or in crisis counseling may be the point at which you recast yourself in the role of traumatized person and become a victim to it. If people are fine, just let them be fine.
  2. People are excellent copers. Never take away a person’s coping mechanisms without their consent and a thought through plan to replace it. Clinically we categorize coping as either positive or negative. Positive: seeks assistance of family. Keeps journal. Exercises. Negative: Abuses drugs and alcohol. Isolates. Overindulges in TV. Doesn’t eat/eats too much. In real life, it’s usually a mixed bag. But either way–negative coping may be superior to no coping. No coping mechanisms threaten a victim’s survival.

The constellation of coping mechanisms put together by each person is unique. If they are maintaining a functional life, I think of their elements of coping as precariously balanced weights on branching wire arms, like a Calder mobile. Remove one element and you’ll destroy the whole delicately strung installation. Clinically, we’d call this decompensation.

My greatest public decompensation occurred in a literal circle of my closest friends at a mandatory mindfulness retreat in the very posh renovated barn/private events space owned by my prestigious southern university. For me, coping is dependent upon keeping my brain engaged in obsessive, hyper-vigilant work on 2-7 jobs or projects at a time. I also use humor and self-deprecation to be able to maintain a detachment from myself and others. (I’m a criterion D and E girl). The closer I am to my fear of dying, which is not lost on me as poetic and appropriate for a nurse, the harder I go into being a straight A student. I can box out the reliving of various death-sentences I’ve been handed by focusing on the esoteric, the academic, the political, the theoretical. Also, avoiding eye contact is key. Making eye contact is lethal. It is hard to deny your physical existence when you are eye to eye.

So the day of this retreat, waiting on a cancer diagnosis, knowing my marriage was caputskies, worrying about where the money for food would come from that week, the last thing I wanted to do was slow down. The last place I wanted to be was present in my mind.

I was barely through the authentic antique barn doors when I caught a picture of a patron of our University. Her bleached smile and tailored skirt-suit. The pearls. The goddamn real towel hand towel on the vanity beside the photo. The meditative music on the Bose surround. I decompensated. I started crying and kept it up all through silent yoga (drip, drip, drip, sniffle, mournful moan) slipping and sliding through my tear puddle on the rubbery mat. I stifled wails with the real towel hand towels in the bathroom. My psych prof asked me the mandatory question, “are you thinking about harming yourself.”

It took may face two days to return to baseline puffy.

Another salient point from my visiting teacher friend. One he got from a biology teacher in grade school: Species don’t occur in nature. Individuals do. I love a botanical metaphor so let’s work this one. What he was trying to impart, that I in my thirties and my friend a decade older are just now beginning to grasp, is that no individual tree or frog or dog meets all the criteria set for them in the key used to decode what species you is. They’re missing a whorl, they have additional spots, their eyes are too prominent. The the designation of species is arbitrary. The tree’s leaves curl under not over. It’s not wrong until you tell it so. We create a holotype to further our own scientific pursuits, which are noble and even useful at a population level, but the human experience can rarely be perfectly described by a text. Not even the DSM.

This failing to see the individual for the species problem is what makes the mandatory part of trauma counseling so worrisome. There are people in this world who do great work reading a person and healing them without the assistance of a marketed standardized trauma scoring system and matching intervention workbook. I’ve seen priests do it. I’ve seen wives do it for husbands, husbands for wives. Friends for each other. Parents and children. Strangers you meet on a train. Books. Poems. Singing.

The hubris to think you can heal trauma with a tool approved by science is so beautifully American. Intention so good, execution a mess, outcome pretty sad. Please give people the chance to manage themselves. Seek only to change behaviors that harm self or others. Never ask for a change without a replacement coping strategy. Move slow.

And never, ever make people sit in a circle.

Last week in health care

Last week in health care

As far as health news for Americans last week was, much like a circus fire, INTENSE. Here in the Capital “Thunder” Dome there was the braying of donkeys, the stampeding of elephants, the crunching sound of every member of the health care community beating their skulls against the walls, and the immense heat of electronic devices tripping breakers over and over as the grid (and I, via bourbon) experienced rolling blackouts.

I stayed up late and got up early and skipped all my meals in an attempt to stay current, but unlike our president I will not make assertions that that means I’m functioning. Hm, maybe he’s just tired and cranky?

Things of importance from this week:

#1 Healthcare Triage short video on understanding the AHCA. You can see that Aaron Carroll is about 85% of the way to his breaking point here. And good god there were still two more days to go in the week.

#2 Paul Ryan shows he’s a bit shaky on what insurance is (we all pay for fire insurance so that if you have the terrible fortune of your house catching on fire, you are not financially devastated). BUT MR. RYAN WHY SHOULD I BUY FIRE INSURANCE WHEN MY HOUSE IS NOT AT PRESENT ON FIRE?

#2 Emma Sandoe, quickly becoming my favorite voice on the internet, expert in Medicaid, with this tweet (Poor people were once human people like me? No…)

https://twitter.com/emma_sandoe/status/839877905882759168

#3 In response to the question: what mandates do the Republicans object to? “Men paying for prenatal care.” Buh..uh..wha..wait. Since no man has ever been born or engaged in an act that might conceive a child.

#4 The AMA, ANA, AHA, and any lobbying association representing direct patient care declare the American Health Care Act to be one hot unsustainable mess. For the uninitiated, this is lions laying with lambs stuff. The orgs are not friends, and we seem to be arguing into a void at this point.

#5 The Washington Post editorial section posts a satire that would make Alexander Pope holler “SWEET BURN” in his grave. Per the Dems response to the AHCA:

“Mr. Gorbachev,” as Reagan so stirringly said, “This wall desperately needs revision.”

#6 Our collective desire to continue living is affirmed by a BBC Asia expert in his home office in Korea when his children pull back that hollow-core door veneer that keeps us believing that what we say and do is suit-and-tie worthy and crucial to the survival of humanity. From his IDAF toddler in her you’re-not-going-to-miss-this-dance yellow shirt to the younger sibling in the most successful comedy vehicle since the American Pie movies. It had to be the mom, btw. That was a woman bolting off the toilet to save her family.

Cheers to this week! Hope you’re well rested.

 

Must Watch: Xeni Jardin and having cancer before the ACA

Must Watch: Xeni Jardin and having cancer before the ACA

Health care is life. Losing your insurance because you need care is punishment for getting sick.

I know my fellow old timers in the health care business can remember a time when patients would ask, beg, plead to not be given a diagnosis (something necessary for billing in a fee-for-service system) for fear of losing their health insurance. Times when we had to cross our fingers and hope that insurance companies couldn’t find some byzantine path to link a new diagnosis to a pre-exisiting condition and leave the patient with the full tab. In the few short years since the protections of the ACA have been in place the relationship between health care providers and patients (the beneficiaries) and their insurers (the payers) has lost the vicious antagonism recalled by the fraud investigations Xeni Jardin went through.

Insurance companies as good capitalist participants had incentive to deny deny deny. With the regulatory protections of the Affordable Care Act they are doing what all good capitalist entities do–look for other ways to reduce costs. Anyone on the population health tip? Insurance companies are attempting to lower their costs by improving overall health of their subscribers. IMAGINE! You may have noticed a gym membership benefit. Money off your premiums for getting a check up? Maybe a nurse from your insurer has called you to discuss managing a chronic condition. It is very much still in the proof-of-concept stage, but people can we agree that incentives for healthy behavior are better than punishments for being sick? THANKS OBAMACARE.

Post Script: Does anyone remember the late ’90s movie The Rainmaker? You know, novice lawyer Matt Damon going for broke for a man dying from Leukemia, his family in bankruptcy, because his insurance company refused to pay for treatment. The way teenage me loved that movie was kinda prescient, huh. But I digress.

Losing the protections of the ACA=losing lives.

Medicaid block grant HC Triage and a quiz.

Medicaid block grant HC Triage and a quiz.

So you’re an audio/visual learner. Maybe you prefer to watch Aaron Carroll talk about Medicaid block grants on Healthcare Triage. Five minutes to being smart enough to policy wrestle any date in the D.C. metro area this week. THERE WILL BE A QUIZ.

1.) What are some of the “perverse incentives” created by Medicaid’s current funding model? (HINT: think fee-for-service care). Does block granting address these incentives? Include direct and indirect implications for state budgets.

2.) If per-person spending has remained relatively flat, and Dr. Carroll is correct in saying that the increase in overall Medicaid spending comes from the increased number of enrollees, and enrollment eligibility is tied to the federal poverty level (as well as qualifying criteria such as being a child, a pregnant woman, or disabled) what can we assume about poverty in America? HINT: I really pointed you right at this one. You don’t need a hint.

Now go out there and get’em.

EXPLAINER: How Would Republican Plans for Medicaid Block Grants Actually Work? And what’s my problem?

EXPLAINER: How Would Republican Plans for Medicaid Block Grants Actually Work? And what’s my problem?

 

There’s no magic in how Congress reduces spending under a block grant mechanism. It just says it will do so, and leaves the hard decisions to others. It’s possible that some states will come up with solutions we haven’t been able to see before, and find a way to reduce spending without causing problems. If they can’t, though, they will have to make do with less, make the hard choices and face the brunt of the blame.

This column is A++. Apparently, block grants are simple: states are given a set amount of money to sustain their Medicaid population. If their needs exceed that amount the state has to come up with the difference or make cuts: recipients, services, costs covered. States that rely on a higher percentage of federal dollars for Medicaid are more likely to come up short in this equation. Many of these states have things in common. They are poorer, health disparities greater, outcomes worse. The fear is that these states, already behind, will slip further if a gap in funding grew. It disconcerts me greatly that Americans are resigned to the great divides that exist among us in health measures and life expectancy. Block grants forewarn of further disengagement of rich from the poor, North from the South, urban from rural, one race from another. Our federal government and it’s protective policies and programs unite us, remind us that we are in fact one nation, interdependent.

Sometimes I pledge allegiance to bureaucracy. When nothing else will hold us equal, it comes in with it’s maddening and obstinate rules. It does.