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”

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.

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. ✌️

Insurers Can Reduce Drug Prices, If Policymakers Let Them…

Source: Insurers Can Reduce Drug Prices, If Policymakers Let Them

Wading into the waters of prescription drug pricing. Interesting article, but I’ve got some counterpoints. Health consumers are not the same as, say, durable goods consumers. You want a kitchen remodel, but you won’t unexpectedly wake up in a home store having purchased a Viking range. God forbid you pass out at the home store and wake up having blown a kitchen’s worth of cash on a high dollar antibiotic to treat your MDRO infection. Apply capitalist principles sparingly.

As a patient who had the unfortunate occasion to met her max-out-of-pocket ($6000) after a cancer diagnosis, I want to keep policies that limit an individual’s financial liability should something devastating happen to their health. Even with that protection I was a hair’s breadth from becoming a medical bankruptcy statistic.

We also need the policy that mandates insurers cover drugs that fall into six therapeutic classes: “anti-retrovirals; immunosuppressants when used for organ rejection; anti-depressants; anti-psychotics; anti-convulsant agents; and anti-neoplastics.” BTW, this began as Bush II era Medicare Part D policy.

As far as physicians making a percentage of the cost of drugs administered in their offices, I agree with the author; Conflict of interest much?

I disagree with the author’s concluding statement that insurers must have the ability to restrict access to drugs in order to negotiate lower prices. Patients dying for lack of lifesaving drugs is a thing we should happily put in the past. Regulating the pricing and equitable access mechanisms of the pharma industry (similar to insurance companies and health care providers) would be a more righteous path.

I know, easy for me to say.

Also, the check the author’s note: Dr. Howard has received grant support from Pfizer, Inc. Gotta love those disclosures.

Finding primary care.

*gets on high horse*

I am a nurse with no small amount of expensive health care related education and experience who works in a health system that has its very own heath plan (partnered, of course) and I promise you it just took me 3 solid hours to find a pediatrician for my kid. AND THAT WAS JUST FINDING A NUMBER TO CALL. There was the extra challenge of subscribing to a HDP HSA (high-deductible plan with a health savings account), but that’s where the smart money is in the marketplace.

After I finally set an appointment got off the phone with the grumpy receptionist from the new pediatrician’s office, I immediately called the old pediatrician’s office to request that my kid’s records be put in le grand queue at the fax machine to be sent to the new doc. I was shut down HARD by this grumpy receptionist. I need a release from the new office first. To be signed by me. And the new office requested a release from the old office. To be signed by me. I have a fax machine app on my phone, but I can’t make this happen.

So we will go to the appointment and take the heat and compromise in care of not having his records at the time he is seen. No medical history at all. I will duplicate a small forest’s worth of paper writing out what my shoddy memory contains of his past years of life. It will be skimmed. No one will be happy.

My morning’s nightmare is comprised of two system failures: Who can I find that will take my insurance (bonus question, at what coverage level) and how do I get my medical records to a new provider.

Here is how this could work better:
1.) Stay within the same health system (Kaiser/Geisinger/Sentara/any odd number of university health systems) so that the records are within the same electronically record management program, the billing is the same, and you can assume insurance coverage is the same.

alas, this is not an option (I moved)

2.) Use a larger brand of insurance. More providers accept them. Makes the hunt easier, does nothing for the transfer of medical records.

also not an option (Are you crazy I can’t afford that!)

3.) Pray for the day that health care reckons with the IT future of an electronic medical record that belongs to the patient, not the health system. Throw in a hail Mary for universal coverage. The first I am convinced will happen. The second not really.

As of now if you establish a record of care with a health system you are held there by the inconvenience of moving to an outside provider. It’s a perverse way to get brand loyalty. The middle-weight systems are (wisely, as the motto is grow or die) consolidating independent hospitals and practices faster than you can say “who bought us?” Health systems are trying to grow as big as health insurance networks and become both payer and provider. I get it. The future of a small number of very large health systems and the demise of the independent practitioner is not the saddest thing in the world. Right now, though, things are getting more complex as dozens of regional players merge and partner and insist on keeping their name on the door. It reminds me of having 4 specialists involved in the care of a critical patient and all I want to know is who is the captain of this ship! But that is another issue entirely. Or is it, really.

To bring it right back to where the confusion started, my insurance card has four company logos at the top. And the website is bad. Also, my human resources person is an animated character. Man that took forever. But now I’m just quibbling.

From the E.R. to the Courtroom: How Nonprofit Hospitals Are Seizing Patients’ Wages – ProPublica

Under federal law, nonprofit hospitals must offer care at a reduced cost to lower income patients, a service often called charity care. But crucial details—how poor patients need to be, how much bills are reduced, and how policies are publicized—are left to the hospital. The Affordable Care Act empowered the IRS to set new requirements for publicizing this information, but those have yet to be finalized.

If a patient can’t pay and Northwest obtains a judgment, it’s too late. Hospital policy says once the collection agency has “incurred legal fees” on a case, the patient is ineligible for charity care, regardless of earnings.

via From the E.R. to the Courtroom: How Nonprofit Hospitals Are Seizing Patients’ Wages – ProPublica.

I’m breaking my break because this spectacular piece of investigative journalism is really all I wanted for Christmas. This is an issue that makes the individual mandate, as Salt-N-Pepa might say, very necessary.

Charity care/financial assistance is available at my academic health system. Patients qualify for financial assistance based on income and payments are calculated with a sliding scale. They may owe nothing, a percentage of the total, or be put on a payment plan. This article uncovers that the criteria for how a patient finds out about or applies for or qualifies for financial assistance is largely left up to the hospital. As a recent cancer patient with massive bills but good insurance and 2/3 of a graduate degree from the academic health system where I received treatment, I still messed up paying the hospital. Medical billing is incomprehensible and damn tricky. Adding the difficulty of applying for financial assistance on top of your stack of bills from many non-communicating entities is the real cherry on top of the garbage sundae. No, it’s an additional garbage sundae on top of the garbage sundae. No, it’s just a pile of garbage.

Bottom line: Access to aid is limited. Barriers to aid are significant. And, most shockingly to me, once you have been sued successfully by the hospital, you no longer qualify for aid. *MIND EXPLODES*

How Obamacare Lowers Your Property Taxes – Forbes

How Obamacare Lowers Your Property Taxes – Forbes.

Key point:

A snapshot of this trend can be seen in Cook County, Illinois, where the public hospital system has seen a decrease in patients who cannot pay their bills thanks to the law’s expanded Medicaid health insurance for poor Americans.

Long and short–Medicaid expansion offers insurance to people in poverty, which is a means to provide payment to public hospitals and health systems that are mandated to give care regardless of an individual’s ability to pay.

Here’s the AHA reports on uncompensated care through 2012 for those who want numbers (before Medicaid/marketplace).

PS- I love working for a public health system because it is the closest thing I’ve seen to fulfillment of that phrase under Lady Liberty’s feet. That’s corny as hell, right?

Price Tags On Health Care? Only In Massachusetts | Kaiser Health News

image

Let us be doubly thankful to Massachusetts.

Anyone with private health insurance in the state can now go to his or her health insurer’s website and find the price of everything from an office visit to an MRI to a Cesarean section. For the first time, health care prices are public.

via Price Tags On Health Care? Only In Massachusetts | Kaiser Health News.

If you have health insurance you’re likely used to making two types of price-based decisions when it comes to care:

1.) Primary care problem: How much sinus infection misery warrants a $35 copay to my doc? Answer (for me) 3-4 days.

2.) Emergent care problem: How much money am I willing to pay to have my burst appendix removed? Answer: ALL OF THE MONEY WHAT IS MONEY PAIN MEDS STAT.

But, for expensive and not especially time sensitive diagnostics and procedures transparency in pricing is so pleasingly sensible. The article makes the point that health care is not a commodity to be bought on price alone and I totally agree, but up ’til now we’ve had no way to collect data connecting price and quality. This is a step in the right direction.

Pro tip on buying your health care based on price–If you are buying on the exchanges/marketplace please do not make the Travelocity sort by cheapest yup I’ll take that one mistake. That is how you end up with a $10,000 deductible and 40% coinsurance on everything. You will not be happy. As I was not happy when I picked a hotel in Richmond that way. Hourly rates. Somehow under I95. Feral tomcats.

Choose a better fate.