No Politico Wants to Know: We Are Patients

It is hell out here for patients right now in America. There may be a swampy, dirty-flash flood going on in D.C. right now, but there are precious few elected officials who see patients as patients. We are health industry consumers. We are political props for both sides of another ridiculous, costly and futile battle over who will please the industry and its political champions enough -- who will grow profits across the board. Patients are on the losing end of this upheaval.

Patients haven't had access to our doctors without the elephant in the room for a very long time now, and that elephant is greed, plain and simple. Until we decide that healthcare access through the expansion of Medicare is the best way to finally re-engage around healthcare for patients who need it, we will fail. Until we move away from greed-driven, winner-takes-all motivation for measuring health system success, we will not break the cycle of going from one dysfunctional model to another.

Greed in the systems -- health and political -- is nothing new. But in 2017, that greed has reached epic levels. Republicans are smirking and smiling their collective way toward making sure the wealthy are happy and the health industry dollars keep flowing into their coffers. Democrats must stop simply pushing back against the repeal of the ACA/Obamacare as a strategy to make the Republicans look bad leading into yet another campaign cycle for 2018. Patients are not stupid people. Patients know when they are being worked. Patients are angry and worried and even scared in some cases. Taking advantage of that anger, worry and fear for political gain is among the greediest things going on in this period.

The greed that is harming patients in the U.S. healthcare system is growing exponentially. Greedy insurance companies. Greedy providers -- including greedy doctors (say it isn't true), dentists, hospital systems, etc. Greedy pharmaceutical companies. Patients are never allowed to forget the greedy demands -- premiums, co-pays and deductibles are calculated and collected from us before any healthcare is delivered. Most patients take that into account before submitting to the embarrassment and sadness of not being able to pay and the disgust about paying so much and in advance of any services actually rendered. Patients are so reviled by the entire system that the system works to protect itself from us. Patients ought never to forget our current place in the U.S. healthcare industry. Widgets. Patients are widgets. Broken widgets, damaged widgets and imperfect widgets interrupt profit flow.

The greed that is harming patients in the U.S. political system is at least as insidious as that shown by industry behavior. Our politicians calculate their own political outcomes first and foremost over anything patients may need. Political greed is driving even those politicians and political advocacy groups who espouse a position of caring about health and patients to first calculate if they will prosper under any given course of action -- will their latest campaign, photo op, town hall meeting, event/rally, or other carefully scripted plan benefit their own positions? This political greed is at work on both sides of the aisle. Patients are useful, sometimes, and patients sometimes allow ourselves to be used if we believe telling our stories will make a difference. As a patient who has spent the past decade watching the political maneuverings around healthcare reform, I know the good and the bad parts about being a patient who speaks the truth openly. It still boggles my mind that so many people in so many ways just do not want to be bothered hearing from patients. If the current moves by the Democrats to hear how fearful many of us are about losing our coverage prove genuine, those Democrats will swiftly offer up not just a defense of a few provisions of the ACA/Obamacare but a real healthcare transformation. I heard former Michigan Governor Jennifer Granholm ponder this week why we wouldn't move to expand Medicare to cover more people. Why not, indeed?

Just in case anyone wonders any more how this turmoil is playing in living rooms across America, let me tell you how the post election period has gone in my home. Almost immediately after November 8, 2016, I knew I would be in trouble. As a 62 year-old cancer survivor who was seriously harmed by a 2015 hospital-acquired MRSA infection that caused sepsis and pulmonary embolisms and also required surgery to remove an infected vein from my wrist to my chest wall, I must use supplemental oxygen and multiple medications just to stay functional and working to pay our bills. We live in a modest, two-bedroom, 950 sq. ft. apartment in a working class area of Denver. I purchase my health insurance coverage on the Connect for Health Colorado ACA exchange. I work three jobs. My husband is retired and relies on his Medicare coverage and a supplemental plan for his healthcare access. His sole source of income is Social Security. Try as we might, we cannot figure out any other way to do this. We have talked divorce to find a way to affordable coverage. But to stay afloat, I can never allow us to have so little income that we would qualify for Medicaid benefits. We are, like so many working class people, caught between the rock and the hard place that was designed for us by those in the greedy class.

Unless we move to a Medicare For All system, millions of Americans will face more intense greed and higher costs. Hospitals and doctors with fewer "customers" will need to charge more to continue making big profits, and insurance companies will really watch what is a covered benefit once they lose millions of people who once sought coverage. Costs will not go down. So, what will happen to patients under the "Deplorable Healthcare Act" that the Trump-Ryan-McConnell cabal loves so much? And what will happen to patients should the Dems prevail and retain parts of the ACA/Obamacare without the ability to pass any improvements to that law? The organization for which I work, Progressive Democrats of America, is calling on all who call themselves progressives to support a real solution and not just a push back on the ACA. We are asking one of our progressive champions, Sen. Elizabeth Warren, to stand with us.

Well, in the interest of honesty, some patients are already planning for the eventuality of various scenarios. Some patients are writing and calling their governors and their Congressional members and showing up to express outrage and worry. I sent the message below to my doctor last evening, to Colorado Governor John Hickenlooper and Congresswoman Diana DeGette, D-CO1, this morning, and now through this piece, to a broader audience. I believe the only way we will make it through any of this is giving one another the gift of being honest about it. It is too critical to do otherwise.

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Good evening,

1. I am due to get a B12 blood test when I drop by the lab, and I wondered if you might be willing for me to have a CBC as well. I have swollen glands or something along my jawline on the left, and I feel a bit puny. I'm guessing it is some sort of virus thing but the gland hurts a bit and it is not changing in size one way or the other over the 10 days I have noticed it there and felt a bit "off."

2. This is a longer term, more difficult question. I would like to know what Kaiser's policy (and yours) is around Colorado's "right to die" law. Because I am a cancer survivor and because this darned COPD/chronic bronchitis and asthma stuff combined with the back/hip/wrist issues and pain are my baseline in my health world, and because there is a possibility I will lose access to any health coverage or care under the political conditions, I am deeply worried about suffering without access to care or alternatively burdening my family with costs that will be overwhelming. If at some point I were to face diminished health that will likely become life-threatening without meds/inhalers/oxygen or other needed care and the inability to afford further care without coverage, would Kaiser allow prescribing of the drugs that would allow me to die? I am really sorry to even ask this, but it is weighing on my mind, and I want to know I have options. I understand that so long as I have coverage and access to my medication and oxygen this is unnecessary to consider, but things may not stay this way for me. I worry about it and my husband gets angry if I even mention the subject.

In any case, thank you for reading this.

Peace, your patient,

Donna

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Final note: some patients have absolutely no confidence that the greedy in the healthcare industry and in politics can or will be stopped unless and until we get wiser and pass an expansion of the well loved, all-American Medicare to cover everyone. Politicos may want to consider that a strong majority of the Democratic base supports such a model, and an overall majority of Americans of all political persuasions do too. Medicare For All stops all of this trauma and uncertainty. For good. Patients can be patients.