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 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 up for debate just a few miles from where I live. 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. The political dialogue, a demoralizing debate over who is worthy of access to care, corrodes the potential of the precise people 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 scant 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.

The health care debate 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. 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”

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

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.

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.

I got Obamacare 

No big story here. I got myself some Obamacare.

Except this is a life changing event for little-old lupus having me who in my early 20s could not imagine a day when I was not somebody’s full time employee and/or spouse. I feel like some dependent wife in the fifties who needed her husband’s signature to get money out of the bank–and now I’ve got my own account! I get to make my own choices and I get to pay for them. Jerks.

Since the age of 18, I’ve lived my life according to where I can find health insurance next. A pre-existing condition meant that if I did try to buy coverage prior to the ACA I would be shown the door. Just like trying to buy life insurance: nothing, at no price, was on offer. I’ve kept jobs I hated and made major relationship choices with fear of dying from lack of health care in the back of my mind.

Sounds dramatic! But it’s also true. I function pretty healthily as a productive part of a family and economy as long as I have access to specialists and medications. This primary level care keeps my organs functioning with regular blood tests, cheap prescription drugs, expert medical advice, and the will of fate. Without it I would pretty likely begin to lose major organ function and become disabled, a net negative as I relied on social security disability, then after that absurd waiting period (during which let’s say I develop end stage renal disease requiring dialysis), draw heavy on Medicare and Medicaid for tertiary level care. I have a dependent too, so add in my scant but still worth mention social safety net benefits. Let’s be honest, with ESRD and a not-hot candidacy for transplant I’ll probably be dead in 5 to 10 years, leaving social security to pay them death benefits to my child.

Grim! And I’m keeping it purely economic. There are people who would miss me and I don’t want to be disabled and for sure am afraid of dying young.

So back to my Obamacare. I bought coverage this week. I will get to see the people I need for this next insurance cycle! The site only crashed 4 times! $450 a month covers me and the wee one. I’m getting a chance to try my hand at freelancing. I. Am. So. Thrilled. (I’m still in working in the hospital, just not in a position that offers benefits) The threats of repeal feel like real violence against anyone with a pre-existing condition. They also motivated me to take the leap while the net was still intact.

I try to keep it clean most of the time but given his flippant threat to my life I’d like to say fuck you to Tom Price. ✌️

Cancer is expensive and price transparency is a little bit helpful.

I intend to triple with this piece: deets about the cost burden of cancer, a bit of personal history, and a plug for the ACA.

Cancer is an industry that for many reasons that make sense and some that are disgusting and controversial (but I’m not fighting that battle today) is full to bursting with money. Especially compared with other diseases having higher morbidity and mortality rates. But in America to die is to break our greatest taboo, so I find it unsurprising that we are willing to spend spend spend so much on a disease where it is routine to, in the same breath as it’s diagnosis, give survival statistics. Hard numbers on your own death will scare all the dollars out of your wallet.

And those dollars go to imaging, surgeries, pharma therapies, infusions, radiation therapies, specialists, and hospitalizations. In the initial months after I was diagnosed with stage 3 melanoma (survival odds 60% at 5 years if you must know) I had more scans than I could count. I didn’t even try to count the scans. In fact, sometimes I wasn’t even aware a scan was happening because I had fallen asleep in an MRI tube, the hammering no match for my fatigue. I was ending my second month of radiation when the bills started rolling in. I recall the total coming to around $15,000. And you want to hear something insane? Convinced I wouldn’t live very long and wanting to spare my husband the debt, I used my student loan money to cover the bill. Student loans that I knew would be discharged upon my death. Thinking and being ill don’t go together.

All of this is to say if I were capable of using the price transparency tools made available to patients by regulations of the Affordable Care Act I probably could have saved thousands. But at the time I didn’t even question the necessity of a scan, much less how much it would cost where. I deffered entirely to plans of the doctor, the NP, the scheduler. In hindsight this surprises me as I was at the time a nursing graduate student who previously managed her own healthcare like a total scrooge. Fear of death, fear of leaving a child orphaned, it dulls the shrewdness of the consumer.

So here we are almost three years post-diagnosis and I am, for the first time, feeling up to shopping for my scans. I am shocked at how much money I just about threw away for convenience of proximity and a communicating EMR. Top image is least expensive estimate, bottom most expensive.

mri-scan

mri-scan2

I’d cross the Wilson bridge for $1200 any day. I’m glad to have made the investment in time to save some cash–but I believe it is a relatively small number of health care consumers availing themselves of the service be it for reasons of urgency of care or force of habit.

When I listen to great policy minds like Austin Frakt or Aaron Carroll of Healthcare Triage they don’t talk about a massive rebuild of the American health system or some sort of copy paste of British National Health. They speak of the improvement of our health care system as the fixing of hundreds of problems potentially a handful at a time. Price transparency is one of these fixes. It feels small in the face of the so much waste and dysfunction, inequity and unconscionable suffering…but hey! I am about to save a thousand freaking dollars. That is not nothing. I recommend you look into doing the same.

Many Well-Known Hospitals Fail To Score 5 Stars In Medicare’s New Ratings | Kaiser Health News

Of the 102 hospitals that received a five-star rating, few are among the elite generally praised for great care. Major academic health centers did not shine. Is the star rating an unfair measure?

Source: Many Well-Known Hospitals Fail To Score 5 Stars In Medicare’s New Ratings | Kaiser Health News

My hospital scored four stars, and we are no Cleveland Clinic. We do work hard. But we don’t take the sickest patients (we transfer to other facilities when our capabilities aren’t sufficient to care for a patient). High acuity patients can be incredibly complex and often therapies that are indicated in less complicated patients are not a wise choice for the critically ill. So, we can’t use our VTE prophylaxis bundle and must assume the risk of blood clots as smaller harm than intracranial hemorrhage. Their hospital stays can be many times longer than the average, increasing the chances for acquiring HAIs (hospital acquired infections) and pressure ulcers. Transferring to a higher-acuity major center, data-wise, is a sending a negative result across town by ambulance to another hospital’s spreadsheet.

Low-scoring large academic health centers treating our sickest patients would point out that they also treat our poorest patients. Socio-economic/demographic factors of course have influence on re-admission rates. This is one of seven measures, but has a weighted score of 22% in calculating the star rating. SO, much like schools in areas where kids are poor and hungry and the teachers spend a great deal of time figuring out how to keep them fed so they can stay awake long enough to learn an equation–making the idea of imposing the standardized testing of No Child Left Behind on that classroom and thinking it is an appropriate way to compare that school to the one in the next county where the average household income is $100,000/year and the PTA meetings are standing room only…well we know how that ended. Our large public hospitals are caring for patients with heart failure who can not read the discharge instructions, do not have access to transportation to get them to the follow up care that they don’t have the health insurance to pay for and can’t take the prescription drugs that they don’t have covered (in non-Medicaid expansion states). Maybe they also don’t have a grocery store in their neighborhood with a selection of food will keep their sodium intake at the strict low level needed to keep them from returning in a few weeks with an acute exacerbation. If that patient is 40% of your population, you have a challenge in front of you.

Good news is these low scores are really lighting a fire under hospital management. Even though right now it feels like the building is burning down a little. It is the hospital CEO’s prerogative to incorporate community building into his financial agenda (Star ratings aren’t tied to reimbursement, but they are composed of Medicare quality indicators that do affect how much the hospital gets from the Medicare-insured patients).

But the data. Where did this data came from and how just or unjust is it? My preliminary ruling is this is a treasure trove of information openly available to the public and I love that; but the population a hospital serves does have bearing on the score a hospital pulls. That doesn’t excuse the hospital from being rated. It points to where funding and research and pilot programs should be in place to address community health indicators, cause hospital walls are permeable.

If you want to go deep on the data, I encourage it! Go here. If you don’t feel like 40-odd pages of methodology and another government website, here are the two bits I found most helpful as points of reference for what was measured and how:

This chart (source):

star ratings chart

and this quote (same source):

For example, in April 2015, OP-21 (Median Time to Pain Management for Fractures) had a national average performance of 55.6 minutes with a standard deviation of 17.75 minutes. In contrast, VTE-6 (Incidence of Potentially Preventable Blood Clots) had a national average of 7.23% with a standard deviation of 9.10%. After standardization and redirection, both measures had a mean score of 0 and standard deviation of 1; both were reversed so that a higher standardized score indicates better quality.

I’m just going to leave a few more links here.
https://www.medicare.gov/hospitalcompare/About/What-Is-HOS.html — Much more on quality measures.
https://data.medicare.gov/Hospital-Compare/Hospital-General-Information/xubh-q36u –The you-need-four-computer-screens-to-read spreadsheet with all the hospitals’ star ratings! SLICK!

United States Health Care Reform:  Progress to Date and Next Steps | JAMA | JAMA Network

The president got published in JAMA! This is a lovely, academic, chock-full-of line graphs sum up of the past 6 years of changes. Uninsured rates are way down, access and quality measures improving. The economy has responded positively. The health care world is topsy-turvy, and it is undeniably rough in the ranks of hospital management. But in spite of the challenges to the health care industry, the protections that the Affordable Care Act legislation provided make me as a believer in health care as a human right happy. And very frustrated with my home state and others that have declined to expand Medicaid.

It’s strange and sad that I celebrated the upholding of the ACA in the office of a Free Clinic where I volunteered, thinking it might be the end of clinics covering adults below the federal poverty level with a patchwork of volunteer services, state funds, and grants. I’m sorry that virtually nothing has changed for the patients we saw at that clinic. Hospitals in non-expansion states are still going uncompensated for millions of dollars of care. The federal government DSH (disproportionate share hospital) dollars that used to support public hospitals with large numbers of uninsured have declined as that money was plowed into ACA program support. One last insult: if you are paying federal taxes in a non-expansion state, your money is fed into Medicaid for adults in other states, while your health infrastructure is starving. But that is not the main focus of the article. This is a celebration. A statistically-backed victory lap. But don’t take my word, listen to Barack Obama, JD:

The United States’ high uninsured rate had negative consequences for uninsured Americans, who experienced greater financial insecurity, barriers to care, and odds of poor health and preventable death; for the health care system, which was burdened with billions of dollars in uncompensated care; and for the US economy, which suffered, for example, because workers were concerned about joining the ranks of the uninsured if they sought additional education or started a business.

Source: United States Health Care Reform:  Progress to Date and Next Steps | JAMA | JAMA Network

Universal health care through the lens of national history, identity.

The Lancet-The Trap of History

Every country has its own story, its own fears and dark shadows. One of the biggest unacknowledged challenges facing global health is adapting evidence to these national stories, resolving a persistent and troubling discrepancy between knowledge, history, and identity.

A MUST READ. Also though not directly related, an argument for liberal arts education as a grounding force in our science-and-tech obsessed world.

Short but oh-so relevant as we in the US scratch heads and gnash teeth and poor poor policy makers can’t seem to get a handle on HOW DO WE MAKE THESE PEOPLE HAPPY! My dream team that will save US health care: The Social Anthropologist, The Historian, The Sociologist, The Behavioral Economist, The Nurse!, and we’ll have a doc too if Atul Gawande has the time. He we be called The Atul Gawande.