Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Affordable Care Act

Pre-exisiting Conditions

· · 3 Comments

Be forewarned: This is a rant.

Where are the grown-ups in Congress? Can we please go back to the days when people with strong opinions had the maturity to speak to one another and negotiate a compromise?

I had a hard time concentrating on my work this past week, with all the school-yard bullying on Capitol Hill that caused millions of hard-working federal employees to sit idle and worry about their next paychecks, while right-wing conservatives insisted they wouldn’t fund the federal budget unless they could gut the Affordable Care Act.

Then, with Orwellian ease, these same Tea Party Republicans turned around and began to press legislation to fund, piecemeal, all the government programs they realized their constituents valued, after all. Like the National Institute of Health. And help for poor women who can’t afford to feed their children. And blamed it all on the Democrats. Really? How stupid do they think we are?

Whatever your opinion about Obamacare, this is not the way to resolve it. The new law may have flaws that need to be worked out, but it also has already helped millions of children with pre-existing conditions to get health care coverage, something the free market has failed to do. And it promises to help millions of American adults with chronic illnesses like scleroderma to get necessary medical care that they could not otherwise afford. So many people tried to check out the new insurance exchanges this past week that websites across the country couldn’t handle the load. Clearly, demand is real and significant.

But there are so many lies, so much misinformation being perpetrated by a conservative coalition backed in large part by the Koch brothers, billionaire oil magnates whose corporate holdings include Brawny paper towels, Dixie cups and Georgia-Pacific lumber, among other profit centers. This past Sunday’s New York Times explains the months-long machinations that have led to the current standoff.

Even the idol of conservative Republicans, Ronald Regan, knew how to negotiate with House leader and died-in-the-wool liberal Democrat Tip O’Neill. Take a page from the Gipper’s playbook, Tea Party members, and let us get on with the real work of governing. Please.

What disturbs me as much as this hostage-taking political brinksmanship inside the Beltway is the cynical effort by this same conservative coalition to undermine the law’s effectiveness by trying to convince young, healthy Americans, especially college students, not to enroll in Obamacare.

The program’s long-term success depends on everyone, healthy or not, to participate and spread the risk. Where is our good old American compassion? Our sense of community and responsibility for each other? Not to mention the fact that young adults shouldn’t be boondoggled into thinking they can do without healthcare coverage. That is just pure foolishness. An emergency room visit for a broken ankle or dehydration from the flu—the kinds of medical crises that can strike anyone, regardless of age or medical condition—can easily cost several thousand dollars, far more than most young adults can afford. And it’s certainly smarter to get healthcare coverage when you’re young and healthy—otherwise you run the risk of being denied coverage when you get really sick.

It’s that pre-existing condition Catch-22.

Health insurance isn’t the only type of coverage that currently penalizes those of us who struggle with chronic disease. I cannot get affordable long term care insurance, something I may well need in the future. My scleroderma makes the premiums outrageously high. I also cannot add to my life insurance, which I fortunately had the foresight to buy when I was still healthy and in my twenties. But my coverage is modest, what I could afford back then.

I’m sure it will be years, probably decades, before those free market inequities are addressed. Meanwhile, I am praying that Congress and the President are able to work out their differences, get our dedicated federal employees back on the job, avoid the major catastrophe of a default on the nation’s debt payments, and refine the Affordable Care Act as needed without any more childish shenanigans.

I love our system of democracy. The older I get, the more I value the freedoms we enjoy. It’s high time for the principled adults to stand up to the egotistical ideologues, take back Congress and work together to solve the very serious issues we all face as a nation.

Photo Credit: kenteegardin via Compfight cc

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Now, Can We Please Move On?

· · 4 Comments

Many, many words have already been written on this subject, so I’ll keep this short. But I’m extraordinarily grateful that the Supreme Court upheld the Affordable Care Act (ACA) last Thursday. In fact, I’m still amazed that we’ve reached this point in the health care debate—or rather, the health care wrangle.

I’m grateful because I have a complicated, pre-existing condition (great euphemism, that) and if it weren’t for Al’s health insurance through his employer, I’d be in deep, deep trouble. God-forbid he loses his job. I honestly don’t know how we would manage to cover all of the doctor’s visits, diagnostics and medications, let alone a hospitalization.

So now, at least, there’s hope that my health insurance coverage won’t always depend on his employment.

I’m also grateful that our two daughters will remain covered until they turn 26. It’s hard enough for someone fresh out of college to find a decent job, let alone a job with good health benefits. By the time Mindi, our oldest, turns 26, the rest of the ACA will be in place.

Unless, of course, Romney wins and the GOP succeeds in unravelling it.

This is not to say that the legislation is perfect. And I do understand and share deep concerns about our country’s debt, the opposition’s core concern. But to trash everything that’s been accomplished and start from scratch so that one party can claim victory over another would be an incredible waste of time and tax payer dollars, with absolutely no guarantee of a better outcome. We need to work with what is now law and make refinements as the many elements go into effect. We need to address any real problems based on actual experience, not hyped-up claims.

But there is so much misinformation passing for truth about this law, so much harsh, mean-spirited rhetoric, so much ends-justify-the-means politics undercutting our ability to solve serious problems in this country, that I’ve felt very discouraged as the election heats up.

Until last Thursday, when a conservative Supreme Court Justice joined his liberal colleagues and demonstrated what it means to make a decision based on principle.

So, can we please move on, now? Can we stop hurling invectives and actually have a civil discourse about how to get this country back on track? Can we put good minds together, especially when we disagree, to find creative solutions, rather than undercut each other in the race for power and control?

Maybe that’s asking too much. But if we don’t all work hard to find common ground, affordable health care for all Americans will be the least of our worries.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.