wintermute2_0

Mar 242017
 

A few thoughts on the demise of the American Health Care Act:

  • Paul Ryan is not a smart man. As others have noted, he is a dumb guy’s idea of a smart man. He actually thought he could pass a bill in a month without doing any of the hard work necessary to pass major legislation. He didn’t reach out to stakeholders. He didn’t hold public hearings. He barely allowed any debate on the bill. And I’m not even getting into the substance of the bill, which was breathtaking in its cruelty.
  • Trump is low-energy! Seriously, he couldn’t be bothered to focus on the task of realizing a major campaign promise for more than a few weeks. He claims to be more interested in tax reform, but that’s likely to be even more arduous than his failed attempt to repeal the ACA. He’ll need to be able sell tax reform on its merits, but he’s shown no capability for this.
  • The voices of constituents matter. If you called your representative or senator, if you showed up at a town hall meeting, if you wrote a letter to your newspaper, then you played a part in the demise of this terrible bill.
  • The fight is not over. Republicans will try to sabotage the ACA through regulatory actions, funding cuts, and other shenanigans. People of good conscience must be prepared to fight any efforts to diminish the effectiveness of the ACA. We must also offer practical solutions to fix the shortcomings of the ACA. And maybe we can even find bipartisan consensus on those fixes.
Mar 132017
 

I drafted the op-ed piece below in an effort to explain why the proposed cuts to Medicaid in the American Health Care Act would be so detrimental to me and millions of others. Alas, the Times was not interested, but perhaps this is a more fitting place for it.

Soon after I turned thirteen, I was hospitalized with pneumonia and my parents confronted an agonizing choice: should they surrender their parental rights to ensure that I received the health care needed to ensure my survival? I was born with spinal muscular atrophy, a rare neuromuscular disability that severely weakens muscles and compromises breathing. I had several bouts of pneumonia as a child and had always managed to recover, but this time was different. My lungs had weakened to the point where I would need a ventilator to help me breathe. Doctors advised my parents to place me in a facility that could care for children with intensive medical needs.

Fortunately for me, my parents refused this option and eventually I returned home with a boxy yet portable ventilator on the back of my wheelchair (this was 1987, when most technology was still in its boxy phase). Caring for me wasn’t always easy for my parents. I’m essentially a quadriplegic and I need help with everything from bathing and dressing to scratching my nose when I have an itch. But thanks to Medicaid, they didn’t have to care for me around the clock. Medicaid provided nurses to take me to school, which allowed my parents to keep working. It paid for modifications to my wheelchair so that I could leave the house more easily. Without the supports provided under Medicaid, I would not have been able to finish college and move to Minnesota for law school.

Today, I’m 43; I live independently and work as an attorney for the State of Minnesota. My life is ordinary in the best sense of the word. When I’m not at work, I go to the movies (Logan was great!), check out the occasional concert (you really must see CHVRCHES live), and generally indulge my pop culture obsessions (that new Star Trek series had better be worth the wait). None of this would be possible without the excellent, round-the-clock care that I receive under Medicaid.

Medicaid has made my life immeasurably better, along with the lives of countless others. However, that isn’t stopping congressional Republicans from embarking on an ideological mission to starve Medicaid of funds. Last week, House Republicans unveiled a bill to repeal and replace the Affordable Care Act. The entire bill is a travesty, but its proposed changes to Medicaid are particularly troubling. First, the bill would gradually repeal the expansion of Medicaid for low-income adults without children. This provision would rob eleven million people of the health coverage that they gained just a few years ago. Many of the people who benefited from the expansion have chronic conditions such as diabetes or mental illness that previously went untreated. Medicaid. Second, the bill makes radical changes to the funding of Medicaid. It would establish caps on the amount of federal funding for each Medicaid enrollee. While this may seem like a technical change, it would dramatically reduce Medicaid funding over time. Under such a scheme, states like Minnesota would soon face budget shortfalls totaling billions of dollars and they would be forced to find savings by cutting services, reducing payments to providers, or both.

For people with disabilities like me, such cuts could be catastrophic. States could eliminate services that we depend on in our daily lives, such as personal care attendants or specialized equipment like communication devices. Those of us who are employed could lose the option to buy into Medicaid, forcing us to quit our jobs in order to preserve our health coverage. In some cases, we may face the dreaded possibility of institutionalization and isolation from our communities.

Republicans claim that these changes are necessary to “save” Medicaid and protect it “for the most vulnerable.” These claims are absurd and deserve no credence. Like any program devised by humans, Medicaid has its flaws, but the Republican bill would do nothing to address those flaws. The true rationale for these cuts to Medicaid is to pay for the repeal of the taxes on businesses and the wealthy that fund the ACA. The vulnerable people whom Republicans claim to champion are those who will suffer the most if this bill becomes law.

Medicaid has been instrumental in helping people with disabilities achieve lives of independence and dignity. Advocates have worked tirelessly to improve the program and its focus on providing services in the community. The Republican bill puts those hard-fought accomplishments in jeopardy and threatens real harm to those of us who depend on the program for our very survival. The only thing that Medicaid needs saving from is this vicious and mean-spirited legislation. 

Feb 182017
 

As expected, House Republicans announced on Thursday their plans to cap Medicaid as part of their broader effort to repeal and replace the Affordable Care Act. Medicaid would be transformed from an entitlement program that covers anyone who is eligible to a fixed amount of funds. This fixed amount of funds would not be sufficient to keep pace with rising health care costs or increased need for Medicaid during economic downturns, forcing states to make some combination of cuts to eligibility, covered services, and payments to health care providers.

One of the most disturbing aspects of the plan is that it pits vulnerable people against each other in a scramble for pieces of a diminishing pie. Republicans portray this as an effort to save Medicaid for “the most vulnerable,” but that’s a lie. Everyone–kids, people with disabilities, the elderly, and poor adults–would suffer as a result of these radical changes to Medicaid. Minnesota alone would face budget deficits in the billions of dollars because of these cuts and the consequences would be felt by a wide swath of my fellow citizens. Republicans aren’t really interested in “saving” medicaid for us poor cripples. They view Medicaid as a huge redistribution of wealth that must be cut as deeply as possible for the sake of free-market principles and survival of the fittest. I’m sure that they would protest this characterization, but it goes to the heart of their ideology.

Of course, this policy fight is personal for me. Medicaid has provided me with the supports I need to live an independent and productive life. If the Republican plan becomes law, I could lose some or all of my nursing care. Minnesota could eliminate the buy-in program that allows me to purchase Medicaid coverage and earn an income, forcing me to quit my job as an attorney. It’s conceivable that I could even end living in an institution. These are scary prospects for me, but millions of other people will be facing even more calamitous prospects if they lose their Medicaid coverage. As I’ve noted before, those of us who depend on Medicaid for our survival can’t allow ourselves to be divided in this fight. If that happens, we will have already lost.

This is only the opening shot in the war on Medicaid. Formal legislation has yet to be introduced and it must go through a lengthy process before it becomes law. But in the meantime, we need to tell our stories to our representatives and senators. They need to understand how Medicaid has made our lives better and how funding cuts could make our lives worse. Those stories need to be told via phone calls to congressional offices and at town hall meetings with your representatives. If enough of us tell our stories, we may be the ones who actually save Medicaid.

Jan 112017
 

Immediately after the election, Republicans and various pundits began writing the obituary for the Affordable Care Act. We were told that repeal would be accomplished within days of Trump’s inauguration with the caveat that repeal would take effect in two or three years while a suitable replacement was developed. Those plans are now colliding with reality as several Republicans realize that a repeal-and-delay strategy could sow chaos in the health care industry. Even President-elect Trump has gone on record saying that repeal and replacement should occur “essentially simultaneously.”

But this approach has its own problems. First, Republicans would need to agree on a replacement and that doesn’t seem imminent. Any GOP-backed plan is likely to cover far fewer people and offer fewer benefits, but Republicans don’t seem ready to admit this publicly yet. Also, a replacement would require 60 votes in the Senate, but Democrats don’t seem eager to play a supporting role in replacing a landmark piece of legislation for something demonstrably inferior.

So what happens next? Republicans may ultimately decide to proceed with repeal even if a replacement isn’t waiting in the wings. After promising repeal to their base for so long, they may feel that they have no choice but to fulfill their promise. Is this what the base really wants, though? Plenty of Trump supporters have purchased coverage through the exchange or they received coverage through the expansion of Medicaid. Their complaints regarding the ACA generally focus on the cost of coverage, not abstract notions of free-market principles. Issues of cost can be addressed through compromise, which could be entirely feasible in a saner political environment.

Governance is hard work and crafting health care policy is even harder, as Republicans are discovering. The ACA could certainly not be long for this world, but it has dodged fatal blows before. Perhaps it can defy death one more time.

Dec 282016
 

The FDA recently approved Spinraza, the first drug designed to treat spinal muscular atrophy. According to a press release from the manufacturer, infants with SMA who received the drug during clinical trials were much more likely to show improvements in motor function than those left untreated. Spinraza is approved to treat both children and adults with SMA.

It’s a bit surreal to live in a time where a specific treatment exists for my disability. I have no idea whether the drug would personally benefit me and I’m not in any hurry to find out. After living with this disability for four decades, my body’s remaining muscle tissue probably resembles the gristle of a cheap steak and I’m not sure any of it can be salvaged. This is probably thrilling news for parents with young children with SMA. It’s entirely possible that those kids will live to see a day when genetic therapies can effectively manage or even cure their condition. In another forty years, people like me could be a historical curiosity, invoking the same reactions that I had when I first saw pictures of kids living in iron lungs in the 1950s:

“People really lived like that?”

Dec 182016
 

Rogue One is the first standalone movie set in the Star Wars universe and, despite some lazy character development, it’s a worthy addition to the canon. We follow Jyn Erso, a reluctant recruit to the Rebel Alliance, and a motley band of freedom fighters as they try to steal the plans for the first Death Star. The plot moves along at a brisk pace and it soon becomes apparent that we are watching a war movie that is much darker in tone than other entries in the series (with the possible exception of The Empire Strikes Back). The theme of war and its costs hasn’t been explored much in the previous movies, so I was a little surprised at how bleak Rogue One could be at times.

The movie also provides a wealth of visually arresting moments as well as carefully placed Easter eggs for the hardcore fan. I’ve already seen it twice and I’m sure I still didn’t completely absorb all of the details in each scene. I would have liked a little more depth in the main characters and fewer vaguely portentous lines about their backstories, but vaguely portentous statements are the bread and butter of Star Wars. Perhaps the next standalone movie (featuring a young Han Solo) will do better in that regard, but Rogue One is still hugely entertaining.

Dec 152016
 

It’s only now that I feel like I can write about the election and its aftermath with any degree of perspective. I was wrong about so many things; things that maybe should have been more obvious at first blush. I thought Clinton’s experience and competence would compensate for her lack of charisma and aloofness. I thought that bragging about sexually assaulting women was far more disqualifying than e-mail mismanagement. I thought that the Obama coalition would turn out in droves to defeat a flim-flam man with no prior political experience and a penchant for manic tweeting.

In the weeks since the election, I’ve been watching a lot of Seinfeld and doing my best to avoid my Twitter feed. Reading the news has become a grim exercise in endurance. Ben Carson will be in the Cabinet? The guy who ran Breitbart will have an office in the White House? The president-elect is dismissing reports that Russia may have hacked our political process to give Trump an advantage? This would all be hilarious if it wasn’t, you know, actually fucking happening.

So now what? Perhaps Trump will turn out to be just a generic Republican, which is still pretty awful. Perhaps he’ll resign after a year or two because he’ll be unable to reconcile his authoritarian tendencies with his pathological need to be liked. Whatever happens, progressives will need to figure out how to mount an effective opposition to this administration. Republicans wrote the playbook on this and we shouldn’t hesitate to use their own tactics against them. Any efforts by Trump to shred the social safety net, undermine efforts to prevent climate change, or cut taxes on the wealthiest among us must be met with the staunchest resistance. We can try to work with Trump when he has some genuinely good ideas, but I’m guessing that will be a rare occurrence. Too much progress has been made in the last eight years and too much remains to be done.

This blog will be a very small part of that resistance. If nothing else, it will serve as the chronicle of a snarky middle-aged guy trying to navigate Trump’s America. So buckle up, Dear Reader. We’re both in for a bumpy ride.

Oct 142016
 

We’re a little more than three weeks away from the end of this waking nightmare of an election and I’m exhausted. I’m exhausted by Trump’s descent into a toxic wasteland of paranoid nationalism and cultural resentment. I’m exhausted by his supporters’ terrifying ardor for a man who is just a few more bad news cycles away from giving a Nazi salute at a rally. I’m exhausted by the cowardice and opportunism of a Republican establishment that allowed a raging bully and sexual predator to come within a few percentage points of the American presidency. I’m exhausted by the hate and bigotry that shows up with alarming frequency on my Twitter feed, which I now check compulsively throughout the day.

I feel as if I’m living through the opening chapters of one of those dystopian novels that I’ve read over the years. I always enjoyed those books because I could enjoy the spectacle of our ruin from the vantage of my relatively safe and enlightened reality. The rise of Trump now has me questioning how long that reality can endure.

To be clear, I’m reasonably certain that Clinton will win this election and it might not even be close. With a little luck, Democrats might also take the Senate, although a House majority is probably beyond their reach. A resounding Clinton victory will give me some comfort, at least temporarily. But this election will leave open wounds that won’t heal anytime soon. Too many Americans have lost trust in government, science, the media, and other civic institutions. This mistrust has been building for a while, but Trump has skillfully fanned the flames, convincing millions that only a strongman can stand up to the elites who are ruining the country. I can imagine another self-styled populist–someone more stable and disciplined–following a similar playbook in four years and finding more success with voters.

Perhaps Clinton will be able to work with Congress to pass some kind of jobs and infrastructure program that will restore some faith in our elected officials and give people hope for the future. Perhaps the Republican Party will reshape itself into a party that emphasizes economic and regulatory issues over cultural issues, leaving the racists and reactionaries without a home. Our country has survived more serious threats to our democracy without succumbing to authoritarian rule, so we can survive a huckster like Trump. Yet we can’t afford complacency. This election has revealed cracks in our foundation that must be repaired before the whole thing crumbles.

Jul 242016
 

Comic-Con is wrapping up in San Diego and, once again, I was not in attendance. Here are a few related news items that have my geek senses tingling:

  • CBS unveiled a teaser for its forthcoming Star Trek series, which is now titled Star Trek: Discovery (which is also the name of starship featured in the teaser). I dig the sleek look of the Discovery and the title seems to imply that the show will be exploring new territory in the Trek universe. Showrunner Bryan Fuller has confirmed that the show will be set in the original Trek universe rather than the rebooted universe of the recent movies, which appeals to the purist in me. I’m still unhappy about having to pay another fee to watch the series on CBS’ crappy subscription service, but I gotta have my fix.
  • Incidentally, I saw Star Trek Beyond over the weekend and really enjoyed it. After the grim rehash that was Into Darkness, Beyond provides plenty of screen time to all of the main characters while spinning an interesting and sometimes surprising story. I’m already looking forward to the next installment.
  • The next season of Mystery Science Theater 3000 will air on Netflix. Hopefully, this means that we’ll get additional seasons of Jonah and the bots riffing on bad movies.
  • A Wonder Woman movie set during World War I? Yes, please.
Jul 162016
 

No, the Ghostsbusters reboot did not ruin my childhood. It’s been a disappointing summer movie season replete with misfires, but Ghostbusters is a funny and charming evening at the cinema. The entire cast has great chemistry, which helps sell even some of the weaker jokes. Kate McKinnon, in particular, delivers a delightfully weird performance that sometimes borders on the truly absurd. It lacks some of the original’s freshness, but how could it be otherwise? The 1984 blended comedy and spectacle in a way that hadn’t really been done before and today’s audiences are much more difficult to impress. The reboot doesn’t try to impress; it just wants to show you a good time, an skill that many blockbusters have forgotten.

Be sure to stay for the final scene after the credits roll. It offers a hint at a possible sequel that should excite fans of the original. I hope we get to see it.