Health Wonk Review: Who’s On First? Edition

These days, it seems we are awash in what Kellyanne Conway calls “Alternative Facts.” I’ve heard or seen more than one commentary questioning whether we are living in a post-truth age. As these opinion pieces typically lament: We were once entitled to our own opinions, but not our own facts. Now, it seems that we are all entitled to our own facts as well. The most recent example might be President Trump’s recent tweet proclaiming the Republicans’ “big win” in the special election for House district 6 in Georgia. In fact, the Democratic candidate, Jon Ossoff, captured 48.1% of the vote, while the leading Republican, Karen Handel, captured just 19.8% of the vote. In no rational world is that a GOP victory. Indeed, Ossoff and Handel now face a run-off election.

But this is the crazy state of things in America–and around the world–these days. And the irony is that the actual facts are confusing enough in their own right. As many of the posts in this edition of the Health Wonk Review make clear, there is little need to spin alternative facts, or move to a post-truth world (as if that’s even possible), when so much of what we are dealing with is hard enough to understand or solve as it is. In the spirit of things as they actually are coming across in ways that perplex even the wonkiest among us–and an homage to the return of baseball season–I offer the “Who’s On First?” edition of the Health Wonk Review.

As usual, the elephant in the room is the ACA. In fact, Joe Paduda wonders at the Managed Care Matters blog why the Republicans in Congress are still trying to repeal and replace the ACA after they missed their chance with the AHCA legislation that was pulled from the floor last month. For him, not even Abbott and Costello are enough–only Monty Python provides the lens to make sense of the GOP’s determination to fail again and harm itself further in the process.

Of course, if repealing and replacing doesn’t work, there’s always the administrative approach to destroying the ACA. And one way to do that is to stop paying for cost-sharing reduction (CSR) subsidies. At xpostfactoid, newcomer to HWR, Andrew Sprung writes: “Without CSR, the marketplace wouldn’t be even marginally serviceable for prospective customers with incomes below 200% of the Federal Poverty Level.” As he explains, over half of current marketplace enrollees fall below that level. He reviews how CSR enhances a silver plan, how CSR-enhanced silver compares to employer-sponsored insurance, and what the marketplace would look like without it.

At the healthinsurance.org blog, Louise Norris writes about the alternative facts being promoted by the GOP that the ACA marketplaces are in a death spiral. Not true, she says, but also not entirely false. Taking a closer look, Norris points to evidence that Obamacare is not “collapsing of its own weight,” but does find that a handful of state marketplaces appear to be on thin ice.

Beyond the health of the state Marketplaces, one of the real worries, if repeal and replace is ever passed, is what might happen to you if you have a pre-existing condition and are unable to obtain coverage in the absence of guaranteed issue. Charles Gaba of the ACA Signups blog has the numbers that members of Congress (and others) will care about. Namely, how many people in each Congressional district have a pre-existing condition and risk losing their insurance coverage.

An often floated alternative is to allow the sale of health insurance across state lines. This is a very common Republican idea, while Democrats are quick to highlight why such an approach will never work. At the InsureBlog, Mike Feehan debunks some of the myths surrounding the idea of purchasing health insurance “across state lines.” While I’m not personally sold on the idea, do be sure to check out the lively discussion in the comments section!

Before we leave the topic of health reform, Roy Poses has something for us to consider at the Health Care Renewal blog. Maybe, he suggests, we need to listen to providers for ideas about why our health care system doesn’t work as well as it could, and how to improve it. In his usual watchdog role, Poses finds that the authors of a recent National Academy of Medicine position paper are physicians, but they are also physicians who serve on the board of directors of health care corporations. Other authors were health care executives and lobbyists. Most of these major conflicts of interest were not disclosed, says Poses. In short, “The health care reform discussion in the US continues to be dominated by big corporate interests, even though they are often thinly disguised. We will not get far with true health care reform unless we can have an honest discussion which included voices of patients, and of health care professionals free of influence of big health care organizations, particularly big health care corporations.”

Turning away from health reform and to a couple of posts focused on medical treatment, we have entries from Jason Shafrin of the Healthcare Economist and David Williams of the Health Business Blog. Jason asks “Why aren’t there more cures?” He investigates why there are a lot a treatments that address diseases over time but fewer cures developed. Where testing and treatment–including curative treatment–does exist, it’s not always clear whether it’s beneficial. Nothing is without risk. But perhaps there is some middle ground. David writes about this in the context of PSA screening for prostate cancer. As he says “I oppose over-testing and over-treatment, so I really had to think hard five years ago when I turned 45 and my doctor offered PSA screening for prostate caner. The US Preventive Services Task Force (USPSTF) had just come out against PSA screening. I opted for the test at the time anyway. Now the USPSTF’s thinking is swinging around to my logic.” He explains in more detail in his thought-provoking post.

Finally, at Workers Comp Insider, Julie Ferguson–who also hosts our next edition on May 4–reminds us that Workers’ Memorial Day is coming up and explains why it is so important to remember the health and safety of the worker, especially in a time of regulation slashing and program defunding.

Well, that’s it for this edition. Get outside and enjoy the Spring–but maybe take a Claritin first!

 

Latest Health Wonk Review

A special Passover edition from one of the friendliest wonks I know, Hank Stern. Check it out here.

 

An Unnerving Experience

The day after Christmas I came down with a cold. Ten days later, I returned to work, but noticed that my right hand seemed weak. Walking to my car at the end of the day, my right leg felt heavy. That night, I realized that I couldn’t raise the toes on my right foot. When things hadn’t improved by the next morning, I drove myself to the emergency department. After a neurology consult and an unremarkable MRI of my brain and cervical spine, I was discharged with a diagnosis of “weakness” and told to return if my symptoms worsened. The following day, I awoke to find that the weakness had spread to my left arm, and every so often I was slurring my speech. My wife drove me back to the emergency department where I received  a lumbar puncture (aka “spinal tap”) and was admitted to the hospital.

After a sleepless night on a general neurology floor, I ordered a strawberry yogurt and an applesauce for breakfast. My hands were so weak that I had to use my teeth to peel off the foil lids. The doctors suspected a condition called myasthenia gravis. They told me that because of my muscle weakness, my breathing might become compromised, and they moved me to the medical intensive care unit.

Doctors visited my room in droves—the blessing and curse of being at an academic medical center—and frequently remarked that my presentation wasn’t textbook for anything. They ordered an electromyogram—in which small needles are inserted to study muscle function—and a nerve conduction study—in which current is sent through electrodes to test nerve function. Both procedures were moderately uncomfortable, but after dozens of shocks on my arms, legs, and face, my doctors ruled out myasthenia gravis. I lost count of the number of other tests they ordered, but I know they included Lyme disease and West Nile virus, among others.

Finally, they settled on a diagnosis: Guillain-Barré syndrome, or GBS. GBS is an extremely rare condition—there are fewer than 6,000 cases in the United States annually—in which the immune system attacks the peripheral nervous system, often following an infection (e.g., my cold). As the nerves are damaged, the result is an inability to control the muscles, leading to weakness, and even paralysis. Because the diaphragm—the muscle that helps us breathe—can also be affected, between 25-35% of patients require mechanical ventilation.

There are two treatments for GBS: plasmapheresis and high-dose intravenous immunoglobulin (IVIG), both of which are assumed to work by “rebooting” the immune system to stop the attack on the nerves. Both treatments have been shown to reduce the severity of symptoms and shorten the length of recovery. Fortunately, most individuals with Guillain-Barré fully recover, but it takes time. While some people recover in a matter of weeks, others take years, and the average is between 6 and 9 months.

My symptoms stabilized, and I was discharged after 5 days. The next day, my wife was admitted for a C-section. Both my mother and mother-in-law flew out to help us. I was able to be present for the birth of my second daughter, but the day my wife came home from the hospital, my symptoms worsened. I lost almost all control of my facial muscles, which affected my ability to speak, eat, and drink. This time my mother took me to the emergency department, and they readmitted me, in part because I was already scheduled for a repeat electromyogram and nerve conduction study at the hospital the next morning. The study showed changes consistent with acute motor axonal neuropathy (a GBS variant common in Asia, but rare in North America), but found no evidence of permanent nerve damage, meaning my chances for full recovery are good. I was discharged the next day.

I’ve been recovering for about a month now. The nerves in my face healed rapidly and I can once again speak, eat, and drink without problems. I remain very weak in my arms and legs, but can walk over 1/2 a mile unassisted. Fatigue is still a factor. Overexertion leads to days of exhaustion. I’m working from home part-time and go to occupational and physical therapy three days a week. Still, I find myself with plenty of time to contemplate my experience. As an assistant professor of health management and policy in a school of public health, I can’t help but think of how fortunate I am, and how different my experience could have been.

First, I live just 10 minutes away from an academic medical center. I have access to neuromuscular neurologists and received prompt treatment. What if I lived in a rural area, or only had access to a smaller community hospital? Would I have delayed seeking care? Would the physicians have diagnosed me as quickly? Many doctors will never see a case of GBS. This might have meant delayed (and less effective) treatment with IVIG. Moreover, having to travel long distances three days per week might make me noncompliant with my therapy regimen, slowing my recovery.

Second, my care has been extremely expensive—over $80,000 so far. Because I have good insurance through my employer, I will comfortably pay just $1700 using my savings. But what if I didn’t have insurance? Or what if I didn’t have adequate resources to cover my share of costs? While my illness was not my fault, I would be expected to pay the full amount on my own, forcing me to negotiate a lower rate, set up a payment plan, or face medical bankruptcy. Should America allow anyone who is unfortunate enough to be dealt such circumstances to have them further compounded by economic hardship or financial ruin? Unfortunately, many Americans face that situation, and if the GOP manages to repeal Obamacare, millions more will find themselves at risk.

Finally, this is a long and trying illness. Understandably, many people become prone to anxiety and depression. While I am a Christ-follower and my faith has been a tremendous source of strength and comfort for me, obviously not everyone shares my faith. Still, I believe that everyone needs some outlet for their spiritual and/or emotional — as well as physical — concerns. My wife and I have experienced an overwhelming outpouring of love and support from family and friends who have prayed for us, provided meals, helped with work-related matters, and served as informal caregivers. What if I didn’t have a social support system through church, work, friends, and family? Chances are I wouldn’t be recovering at home, but would be alone in a rehabilitation hospital, while my wife stayed home to care for our children while recuperating from major surgery.

As I hope you can see, I consider myself very blessed to have such easy access to top-notch healthcare, the ability to pay for that care with a comprehensive insurance product and adequate savings, and a robust system of support for my spiritual, emotional, and physical needs. The road I’m on is not an easy one, but it could certainly be much harder. For millions of Americans, whether they have a rare condition like GBS or a much more common malady, we have a healthcare system that all too often makes the road impassable. We must do better.

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Note: This post first appeared at Public Health Post, where I am an occasional contributor.