March 7, 2021 / by 


"MD's Sob Story"

I’m not Raul Grijalva or Jerry Nadler, but I thought I’d try to respond to TPM reader MD’s “sob story” (as MD called it) because the story illustrates the issues at stake in health care reform. Here’s the story.

Like everyone I have a sob-story to tell about health care. After telling it to countless liberals who oppose the Senate’s health-care reform bill, I still haven’t heard a good answer from them about why they can’t support the Senate bill. They usually stop talking, or try to change the subject.Maybe Raul Grijalva or Barney Frank or Anthony Weiner or Jerry Nadler have wrestled with this problem and I haven’t seen it. Have you seen anything from them about this?

My story: My father is dying of Huntington’s disease. Before he dies in 8 to 10 years, he will need anti-depressants, anti-psychotics and drugs that fight dementia and his tremors and convulsions. He’ll need multiple brain scans and physical therapy sessions.

Current medical treatments can’t save him, but they will give him a few more years before the slow death strips him of his memories, personality and control of his body.

There’s a 50 percent chance the same slow motion death awaits me and each of my three siblings. If I ever lose my job I’ll become uninsurable, permanently. My sister already lost her insurance.

That means whatever treatment is developed for Huntington’s will be unavailable to us. There’s simply no way we could afford it. Not only high tech gene therapies or other interventions, but the medications and treatments that exist now that would buy us enough time to see our kids’ graduations or weddings, and would give them hope of not suffering their grandfather’s fate.

There’s a bill that would mean we’d never be rejected for health insurance or have it canceled. Health insurance that could ease our final years, or maybe even save us.

But liberals are refusing to support it. I know there are principles and politics at stake. I know people are tired of being told to shut up and take what’s given to them. But in the end, there a thousands of people with Huntington’s and millions of people with other serious or terminal illnesses who will never benefit from treatment because they are uninsured. Millions more who are otherwise healthy will die premature or unnecessary deaths because basic health care isn’t affordable.

What do liberal leaders say to them? What do those liberals tell people like my dad, a die-hard activist Democrat, a UAW member who worked his way through college to become a teacher?

I’m used to Republicans and conservatives not giving a damn about people like us, or mocking us for asking questions like this. That’s why my father spent so much of his life fighting to keep Democrats in power. But to be abandoned by people my father worked with and supported his entire life? What in the bill is so terrible to justify that?

This isn’t about betrayal, or a slap in the face, or an insult. It isn’t about strategies to keep seats, or grand theories of justice. Democrats in Congress have the chance to cast a single vote that will make the lives of tens of millions of Americans less wrenching, our demises less brutal. That’s what this is about.

I’d like to hear Reps. Grijalva, Frank, Weiner or Nadler tell us why they can’t cast that vote.

Now, to begin with, MD’s entire premise is wrong. To suggest that Grijalva and Nadler are the people preventing a bill from moving forward ignores the fact that, as things stand, even with their votes, the House would be at least one vote short of passage. As I pointed out here, until MD can convince one of the following to vote for a bill, there is zero chance of the Senate bill passing: Bart Stupak, Larry Kissell, Dennis Kucinich, Eric Massa, or any number of Blue Dogs who refused to vote for the bill the first time. MD would do better yelling at the Catholic Bishops, who think it’s more important for Bart Stupak to make choice less accessible to all women than it is to provide lots of poor Catholics health insurance, than he would yelling at Grijalva and Nadler.

And because the bill is at least one vote short, it is going to have to get more populist (to convince Kucinich or Massa to support it) or still more conservative (to get either the anti-choice vote or the Blue Dog vote) before it passes, presumably through reconciliation.

And frankly, it may get better in ways that are very important for MD and his family. MD doesn’t explain his situation well enough to be clear, but I will assume his father currently has health insurance through either the UAW or a teacher’s union and has not yet reached Medicare age (because otherwise, the debate is primarily about whether MD’s father has to pay for drugs in the Medicare Part D donut hole).

One of the reasons why Grijalva and Nadler do not support the Senate bill, as is, is because it would lead people like MD’s father to pay more out-of-pocket for his care–because that is the entire point of the Excise Tax. Starting in 2013, MD’s father might have to pay higher deductibles each year, he might have to pay for his physical therapy, he might find some of the expensive medicines unavailable to him. As an example, after my health care went through the kind of changes envisioned under the excise tax, I had to start paying $800 for necessary MRIs once or twice a year. And under my new plan, I would have had to pay $560 six times over the course of cancer treatment (a total of $3,360) for one of the really expensive drugs I took, a drug just like the expensive drug therapies MD refers to.

So MD needs to understand that Grijalva and Nadler want the changes that must happen before this bill passes to benefit MD’s father, to prevent him from losing his current level of care, rather than benefiting a bunch of millionaires.

And, presuming those changes would push in the direction of House bill on other issues, there is a benefit for MD and his sister–who have what is counted as a pre-existing condition–as well. I’m very sympathetic to their plight, because as of October, when I’m scheduled to lose my COBRA, I will be, like his sister (and like he’d be if he lost his job) uninsurable.

For starters, the House bill allows people to keep COBRA until the exchanges go into effect (2013 in the House bill, 2014 in the Senate bill). Grijalva and Nadler are fighting to make sure that if MD lost his job, he could keep his current insurance until such time as he could get health care through the exchange. For me, this would be a huge benefit, because as expensive as COBRA is, it’s far cheaper than I would have to pay for any health care I could get, if I am able to.

As for MD’s sister, Grijalva and Nadler are fighting so that MD’s sister can access high risk insurance right away; under the current Senate bill, MD’s sister must go for six months without insurance before she can tap into the federal high risk pool. And the high risk pool for his sister would be half as expensive if Grijalva and Nadler get their way. Plus, under the Senate bill, there is a dollar limit on how long the federal government can offer that high risk insurance; the CMS has estimated that the money would run out “by 2011 and 2012,” so MD’s sister might well lose health insurance or pay even more between now and when the exchanges, under the Senate bill, open in 2014. And note, if Grijalva and Nadler get their way, MD’s sister can enroll her whole family in the high risk pool, whereas under the existing Senate bill, only she would be able to enroll.

Finally, one more thing. If Grijalva and Nadler have their way, then MD’s father’s drugs will be cheaper, both because they’re fighting to lower the exclusivity periods for the high tech gene therapy MD refers to from what is currently in the Senate bill. And because they’re fighting to prevent pharmaceutical companies from making deals with generic manufacturers to hold off on production of generics so as to postpone competition for a number of years. Again, for people facing years of medical care, such things will make a huge difference in quality of life.

So before MD starts beating up progressives, he ought first beat up the Catholic Bishops who are standing in the way of a bill. And because the House is at least one vote short of passage–even with the progressives who voted for it the last time–there will probably be an agreement to change the bill in reconciliation. And one of the first things that will happen–one of the things Grijalva and Nadler are fighting for–is to make sure that middle class union members like MD’s father don’t have their health care cut dramatically just to shield a bunch of millionaires from higher taxes.

So, I agree with MD–this isn’t about strategies to keep seats. It’s about making sure MD’s father gets to keep the health care he already has.

Update: Corrected per lizard’s comment.

Update: CMS link included, language updated. Generics language updated.

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