Mute

At this point, I have no idea what to say. People ask me -- is health reform dead? Is something still on track? I have no clue, and neither does anybody else.

The President is holding a televised bipartisan summit on February 25. The Republicans are already getting nervous since he pretty much always out-performs them in style and grace, even if you disagree with him on substance. He says he's willing to consider Republican ideas. Indeed, the Senate health insurance reform bill includes provisions that would allow insurers to sell across state lines and limit some medical malpractice suits, and the President has said he is willing to listen. But the Republicans want to scrap all the work that's been done and start over from scratch. I'm not sure America can absorb another year of this fight.

The President also hasn't ruled out using the reconciliation process in the Senate to get a bill passed by only 51 votes rather than the 60 votes needed for cloture, which means bringing a bill to the floor of the Senate in the usual fashion. Reconciliation can be and has been used to make budgetary changes, and surely health reform affects the budget. But the House wants the Senate to go first and the Senate wants the House to go first, so like school children, they do nothing but make angry faces and call each other silly names.

I can look at this from lots of directions. I sit here all day and talk to people who are alternatively despairing or angry or scared because they have no insurance and, thus, no health care. I piece together a patchwork quilt of benefits for them -- a free clinic here, a free prescription drug there -- but these are band-aids, not solutions. And so when I look at this situation from their perspective, I feel a sense of urgency that I don't think the Congress of the United States quite gets.

I can also talk politics. Health reform died in 1994, bringing with it a wave of Republican members of Congress that stalled all further progress during the Clinton administration. If it dies again now, no Democrat will ever raise it again -- and no Republican has the will to do so. So we can just forget it. Health care costs will continue to increase. Their proportion of our total spending will continue to grow. The Democrats will have been shown up as complete failures, unable to act even when they had a majority in the House and a super-majority in the Senate, and the Republicans will have been shown up as the party of "no." There are no winners here -- especially not the American people.

What I can't do is figure out what perspective, whose interest, is served if health reform dies other than the health insurance industry. And so we see Anthem of California raising their rates for individual plans by 39%. 39%. That is not a typo. When Anthem of Connecticut tried to do the same thing this past year, the Insurance Department (prodded by our wonderful Healthcare Advocate Kevin Lembo) limited the increase to 25%. As if that were acceptable. For people who are spending $1000 per month on health care, a 25 or 39% increase is huge. And things will only get worse if we do nothing.

I can't figure out who else wins in all of this. Doctors aren't happy with the current state of affairs. I talked to two doctors just yesterday who were mad as hell that they can't get their patients the medication they need OR THEY WILL DIE. No joke -- we're not talking minor things here -- we're talking life and death. The pharmaceutical companies? Well, they sure do make a lot of money, but you have to give them some credit -- every one of them has patient assistance programs through which poor and uninsured patients can get free medications. See www.needymeds.org. So could they stand to make less profit? Of course -- a lot less. But at least they are contributing something to a temporary solution, and that's more than the insurance industry can say for itself.

The insurance companies must be having a party every day that goes by without any reform bill passed. On the backs of people who are suffering more than you can know.

I work very hard -- those of you who know me know that I work harder than my body is comfortable with. But I have never worked as hard as I'm working right now. The insurance appeals I'm handling now are just brutal -- every one of them, life and death. Every one of them, a rare disease for which there is no FDA approved option, so the insurers just don't want to treat at all -- life and death. How is it that I could have three calls from three patients with neuromyelitis optica (NMO or Devic's disease) all with Blue Cross of Illinois, all denied a totally routine treatment called rituximab all within a couple of weeks of each other? There are maybe 5000 people with NMO in the US and I hear from three of them in the space of 2 weeks? It seems impossible. If it's not NMO, it's gastroparesis or a brain tumor, or Tourette's syndrome. The insurance companies are laughing all the way to the bank. They are collecting premiums and then denying ALL treatment to people with rare diseases because there's nothing FDA approved for these rare diseases -- so therefore they get nothing. As if there were no concept of "orphan" drugs for "orphan" diseases.

I'm just one person. I can't help all of these people. But who else is there? I'm telling you -- the other people who do insurance appeals are referring people to me!!!

The whole thing's going to crash and burn. Yeah, that includes me, but I'm not the important part. The whole system is going to crash and burn. Doing nothing simply is not an option. As costs go up 39%, people will have no choice but to go without insurance, which means their chronic illnesses spiral out of control, landing them in the emergency room -- and lately, I'm hearing more and more than emergency rooms are sending people who don't have insurance away. There is nowhere to go. There is no reason for hope. There is nothing for us.

And the President and Congress don't hear us, can't hear us, won't hear us. And so we will die. Quietly. Avoidably. Tragically. We will just die.

Doesn't that make you want to fight even just a little? Jennifer