Friday, December 30, 2011

Happy New Year's -- If We Make It So

I feel like I'm supposed to have something smart to say -- something about bygones and starting anew. I'm not sure I have anything really big to say, but as always, I'll share my thoughts and see what comes of it.

It's been a huge year for Advocacy for Patients. Nicole Netkin-Collins started in March as our first full-time staff attorney. We couldn't be happier to have her. It means we can serve more people and -- if I can get my priorities straight -- it should mean that I don't work 15 hour days all the time. Me and my priorities, putting work before all else? Well, that's going to require more work, on the agenda for 2012.

We also moved out of my house into real offices. I love our new offices, really. They fit us so well. Everything worked out just great. We're comfortable there. We're home. Every day, I walk in and smile knowing I created a space for us that really suits us to perfection.

We had a lot of good wins, and some pretty big losses, as well, as we continue to battle with insurance companies. We're pretty successful at insurance appeals for things that are well supported in the medical literature. For example, Nicole won a huge appeal to get IV lidocaine for a patient with complex regional pain syndrome, which was very exciting. But since we take the hardest cases, where the medical records don't firmly support a diagnosis or the medical literature doesn't support the treatment in question, it's an uphill battle. We win some, but the ones we lose are heart-breaking, not only for the patients, but for us.

We've had more employment cases this year than ever before. We suspect that, in this economy, when employers are laying people off, they like to start with people who take a lot of FMLA leave or need reasonable accommodations. We also continue to have way more school cases than is justifiable -- schools still threatening to send sick kids to truancy court, stupid things like that.

We did a tremendous amount of policy work this year. We spent a lot of time working with national consumer groups on health reform implementation. Our role is the biggest when it comes to the new appeals rules because we have such broad experience in filing insurance appeals in many different states. We've also weighed in on the Exchanges, and have been working hard to improve the Exchange set up here in Connecticut. We also filed an amicus ("friend of the court") brief in the Supreme Court in the health reform case.

In addition, we published our first paper on our chronic illness survey.

And with all of that, we even broke even on the year -- a tremendous accomplishment in a year of such growth.

2012 will be a challenge. It will be the first full year in which we have to pay for all of that growth. We're off to a decent start, but in 2012, I have to work on my fundraising skills, for sure. Also in 2012, we are serving on the advisory committee for the Connecticut Health Survey, and the consumer advisory committee for FAIR Health, which you really should check out if you haven't already. Finally, it is possible for consumers to get information on "usual and customary" rates, which allow us to fight when an insurer wants to pay a miniscule portion of an out-of-network service.

Perhaps the most important thing that will happen in our little corner of the world is the Supreme Court's decision on the health reform case. Briefs are due in the next month or so (ours was the first one to be filed), and oral argument is at the end of March. We should have a decision in June. If the law remains intact, we will have coverage of people with pre-existing conditions, along with subsidies to make insurance more affordable, in 2014. If the law is struck down -- or perhaps even if only the individual mandate is struck down -- we may lose the most important advancement the law has ever made for people with chronic illnesses.

And then there will be the Presidential election. While we stay out of electoral politics, we strongly support health reform. Even if the Supreme Court upholds the law, an anti-reform President could take away coverage of pre-existing conditions before 2014 rolls around -- a huge loss for people with chronic illnesses.

But most of all, 2012 will mean another 1500+ clients who battle chronic illness in one way or another. Some of them will bring us joy; some will bring us loss and pain. But we continue to feel privileged to do work that matters.

William James said life is worth living because we are free to make it so, from the moral point of view. In other words, as long as we can be a positive influence in the world and on each other, we can give our lives meaning. Nicole, Echo and I do that as best we can every single day, with every email and phone call we get. But we can do better. We all can. Don't shy away from the homeless; know that it could just as easily be you. Don't judge those less fortunate; it's not their fault they got sick, which for too many people leads to unemployment, financial ruin, foreclosure, isolation.

Make it your New Year's resolution to warm your heart to those in need. Small government is all well and good in theory; but people need care, shelter, warmth, and we need to continue to press our elected officials to help make sure our basic needs are met -- for all of us. And if you're reading this thinking that if you can make it, why can't everyone else? It's because not everyone has the capacity for reinventing themselves; not everybody can bounce back; not everybody has friends and family for support. We humans have different skill sets; not everybody has the ability to scrape together a life that has gone to ashes. Instead of thinking that others should tough it out like you do, try imagining doing that without your skills, family, friends, energy. Feel compassion for those less fortunate. Make it your New Year's resolution to develop that warmth in your heart if you don't already have it.

I've said it before and I'll say it again: If everybody did whatever they can do, the world would be a far better place. So join with us and, in 2012, do whatever small deeds you can to make the world a better place, or at least not make it worse! You'll find that doing good is far more of a gift to yourself than it is to others.

Happy New Year. Jennifer

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