Thursday, February 25, 2010

Summit Preview

Today's health reform Summit isn't going to be a dramatic scene where everybody rolls up their sleeves and tries to reach agreement. It's all about who looks better to the TV audience. And frankly, I'm mad as hell.

Yesterday, there was a Facebook chat with the White House about health reform. I could barely believe what I was reading. People are still calling this a government take-over of insurance. The public option is dead, folks. And all it was was on option, a choice, that would have been offered alongside private options. Even so, it's no longer on the table -- period. How is what's left a government take-over of insurance? People are gullible and lazy -- too lazy to read the President's plan, which is all of 11 pages long. And opponents of reform just keep telling the same lies, and people keep buying those lies. Isn't this an issue that's important enough for people to do a little reading and research of their own?

Someone on Facebook yesterday accused me of being fooled. I've read the thousands of pages of draft legislation. I bet the person who thinks I've been fooled hasn't. I bet he (it was a he) is just buying some line he's been fed by Fox News. We're all fools if we let this chance at real reform go by.

This is about life and death, not preening for votes. This is about whether people who have insurance will be able to afford to keep it, and whether people who don't have insurance will be able to get it.

This is about the kind of country we want to be -- one with compassion or one that allows our sick to fall by the wayside and drown in their own misery.

There simply is no issue more important to the ideal of America than correcting the vast inequalities in health care.

So, Mr. President, do what you have to do to get us a deal. If that means tort reform, just do it already. If they want interstate insurance plans, fine. Are these good ideas? Absolutely not. Doctors should be held accountable for malpractice. And states should be allowed to regulate insurance sold in their state. But is anything bad enough to be worth tanking the whole thing?

We must have coverage for pre-existing conditions. We must eliminate lifetime and annual caps. We must have individual mandates so the young and healthy are part of the pool and the risk is spread among us all. We must have subsidies. And so if it takes swallowing some bitter pills, we have to do what we have to do.

Because there is no issue that is more important facing America today. Sure, jobs are critical, financial regulation is critical, climate change is critical. But health reform is truly life and death every day for thousands of people.

Yesterday, I got an email from the parent of a profoundly ill child. They make too much for Medicaid but can't find assistance with copays and their whole family is falling apart as a result.

Yesterday, I talked to a woman who's housebound and can't get her IV medicine because the home health company won't cross county lines to travel 8 miles into her county.

Yesterday, I talked to a woman whose son is on Social Security disability, and after rent and utilities, he has $4 per month to live on -- food, clothing, everything. $4.

That was just a little bit of yesterday.

The state of our Union is miserable. Every day we allow this heartache to continue, we become less of an ideal for the world and more of a country that lacks compassion and community. Every day, people die because politicians can't put the right and the good before their desire to be re-elected. Every day, we become less of a role model and more willing to sacrifice our neediest neighbors. And if you think the world doesn't see it, you're wrong -- they do, and it undermines our leadership internationally, as well.

There's still time for the elected officials in Washington to suck it up and do the right thing. But what reason is there to think that they actually will do it? If we end up with reform -- any reform -- it will be a miracle, and for so many people, it will be too little too late.

We are out of time, folks. The Anthem subscribers in California whose rates are going up 39% will join the ranks of the uninsured, along with millions of others in similar circumstances. We are at the tipping point. People are dying every day. Every day, the problems people come to me with are worse, harder, more overwhelming. People are dying, folks. No joke. People are dying and John Boehner is trying to figure out what color tie looks best on TV.

If we don't do this and do it now, we have no right to call ourselves the land of opportunity, a compassionate people, a role model. If we don't stop the slaughter at the hands of insurance executives and do it now, we have no right to call ourselves Americans. Jennifer

Monday, February 22, 2010

White House Proposal is Released

As promised, the President has released a health insurance reform proposal which you can read here. It's not 2000 pages; indeed, there are many, many gaps that would have to fill in before this could become law. And there are no real surprises -- nothing that jumps out as something we haven't seen before. It does appear to have been tailored to allow the proposal to move through reconciliation by eliminating many of the non-budgetary items. It also is very streamlined; this definitely is a broad outline, not a detailed proposal. The tough issues -- abortion, immigration -- appear to have been tabled for the moment, and there are obvious questions. Here's a summary:

There will be no denial of coverage due to pre-existing conditions, effective 2014. Within 6 months of passage, there will be high risk pools for people who cannot obtain insurance because of pre-existing conditions.

Individuals will be required to purchase insurance, and will receive tax cuts if their income is not over certain limits in order to make their insurance premiums more affordable. Individuals who fail to buy insurance will pay a flat, sliding-scale fee. Employers will not be required to cover employees, but they will pay a fee for each employee they do not cover who requires a subsidy.

Ultimately, there will be no more lifetime or annual caps on benefits (effective 2014). The proposal doesn't say what happens in the meantime, as best I can tell.

Rescissions or policy cancellations due to illness will be prohibited.

There will be Exchanges -- an electronic marketplace -- where consumers can shop for available insurance company options. However, there will be a national entity that would govern or control health insurance premium increases.

Premiums will be limited to a certain percentage of income (sliding scale, anywhere from 2.2% to 9.5%), and financial assistance to the middle class up to families of 4 with $88,000 of annual income will receive assistance with health insurance costs.

Medicaid would be increased to 133% of the federal poverty level, and the federal government will pay for this increase for the first two years, with the state share increasing over time after that. The controversial deal that was struck for some states -- most notably, Nebraska -- are eliminated.

The Medicare donut hole -- the gap in coverage of prescription drugs -- will be eliminated, and the subsidies currently paid to private HMOs that administer Medicare -- Medicare Advantage Plans -- will be eliminated.

The excise tax on so-called Cadillac plans will be delayed to 2018, and will be increased to plans that cost $10,200 for individuals and $27,500 for families. So if you have a high cost plan, it will remain intact until 2018 if you choose to stay with it.

There will be a stronger appeal process for denials of coverage, similar to the independent reviews that exist in most states today. There are no details here, but based on the House and Senate proposals, it is fair to assume that there would be a final review by an independent review organization that has the power to overturn the insurance company, which already is the case in most states.

There will be government oversight of premium rate increases, and children would be able to stay on their parents' policies to age 26.

Preventive care would be free.

Once the Exchanges are set up, insurers could not base premiums on health history, gender, genetic information, domestic violence, or salary.

Much emphasis is placed on wellness and prevention programs for controlling the cost of chronic illness.

This is, perhaps of necessity, painted in broad, uncontroversial strokes. There is little here for the Republicans to oppose, mostly because the most thorny issues are not addressed at all. For example, again, it adopts the Senate "compromise" on abortion, and there is no mention of immigration. There is no mention of tort reform; I am willing to bet that the White House gives the Republicans some form of malpractice reform pretty early on in Thursday's negotiation.

It seems to me that the White House made an effort to pull from the House and Senate proposals all that they had in common, leaving gaping holes where the devil lurks. I can only assume that the White House decided to start the summit with the provisions that should easily garner bipartisan support; the provisions that, if opposed, make the Republicans look like the party of no. It's boiled down to just over 10 pages -- 10 pages of content that the majority of Americans will support, written in short, plain-spoken snippits that are not controversial. Of course, it's getting from here to a final agreement that is difficult, and the White House knows that. Still, by starting at a point of utter reasonableness, it should be hard for the Republicans to demand that we start with a blank piece of paper.

Anyway, this is the starting line, and it's a decent one -- it would be better with a public option, immediate lifting of lifetime and annual caps, etc. -- but a good, solid place to start. Now's where it starts to get interesting. Jennifer

Friday, February 19, 2010

Feel good and enjoy the week-end


Social Networking 101: Migraine Aura

A very good, well-meaning friend convinced me that I really need to do more social networking for the sake of Advocacy for Patients. For me, I could say no, but I never say no when it's for Advocacy for Patients.

So now I have a Twitter account and I tweet. Tweeting doesn't come easily to verbose attorneys, let me tell you.

But once you tweet, then it occurs to you that your Twitter feed should show up on Facebook. And your blog should show up on Twitter. And by the time you're done, you're caught in a web of social networking where you have thousands of friends who couldn't care less about you but follow your every tweet anyway.

Well, follow me on Twitter here and then on Facebook here, and you should be able to read me saying the same things over and over again in at least three different places.

But what would your life be without my Twitter feed, after all? Jennifer

Friday Health Reform Update

Wow -- with all my Twittering (or tweeting, or whatever you want to call the insanity that wants to make me abbreviate in my dreams and have no thought longer than 140 characters) -- I didn't realize I haven't blogged all week! Well, here I am.

And today's a good day to blog because there's finally hope on the horizon. The NY Times is reporting today that the White House is going to release a compromise health reform proposal on Monday, in advance of Thursday's bipartisan summit (to be televised live, so don't call me or email me on Thursday). It's going to include all of the pieces that the House and Senate bills have in common -- no pre-existing condition exclusions, mandatory coverage, subsidies to help the middle class afford premiums -- and suggest compromises on all of the other issues. Should the Exchanges be state or national (national has benefits to both sides -- the Republicans want to let insurers offer plans across state lines; the Democrats don't trust the states to run the Exchanges well or fairly)? What to do about abortion, immigration (i.e., don't pay for abortion, but the devil's in the details; definitely don't give illegal immigrants much of anything, I suspect)? The Times says there will be a tax on so-called Cadillac plans -- high cost plans that the White House believes encourages people to get more health care than they need -- bad, bad thing for people with chronic illnesses who genuinely NEED more care. I don't think there will be many -- if any -- surprises. I will try to review the proposal and post a summary here as quickly as i can.

The White House sounds serious about this, and here's why. They are writing a bill that they believe, under the Senate rules, could be passed as budget reconciliation so only 51 votes are needed to pass it, rather than the 60 votes needed to pass non-budget bills. The opponents would challenge this as a parliamentary move, and the Senate parliamentarian -- you get a gold star if you know his/her name; he/she certainly wasn't elected by anybody -- decides whether there's enough connection to the budget to allow it to go through under reconciliation. If so, 51 votes passes -- a majority. How very un-democratic (not)!

Meanwhile, as if the progressives had planned the timing, health insurers are not doing themselves any favors by announcing huge rate increases. Anthem of California started things off with a proposed 39% premium increase, which the Department of Health and Human Services (which has no jurisdiction) said it would block. When Anthem back-pedaled, HHS issued a report listing increases of 18% and higher all over the country. If that doesn't explain the need for a public option to compete against private insurers and keep premiums down, I don't know what does. So Senator Bennet floated a letter that, as best I can tell, has about 15 signatories asking Senator Reid to hold a vote on a public option in the Senate using reconciliation.

Finally, there's a march going on from Philadelphia (it started this Wednesday) to DC to fill the mall in DC on Wednesday with pro-reformers. It's called Melanie's March in honor of Melanie Shouse, who lost her fight against breast cancer but became a health reform activist and example to all of us. The details are here if you want to participate in some way, even locally.

Folks, I know this blog isn't read by many people. I'm only one sick person in a broken body who talks to a lot of other sick people, and who sees the worst of our system's failures. But if you ever listened to me about anything, listen to me about this: If the President does not pull this off next week -- if he doesn't get unified support of the Dems, even if they don't like everything in his bill, and if he doesn't show up the Republicans as the party of NO, who have no concrete, productive ideas of their own other than tax cuts (the answer to all that's bad in the universe), this will be over and done with. Reform will never happen again in our lifetimes. We will keep paying premiums that increase 15-30% per year. We will keep having sick people uninsured solely because they are sick. We tried this in 1994 and it died. We've actually passed it in both the House and Senate this time -- if it dies now, no Democrat will ever try it again. And mark my words: if this dies, you can kiss away a second Obama term of office, too.

So PLEASE call your member of Congress now. Every one of you, call your Representative and your Senators -- both Senators and one Representative. If your members are already in favor, thank them and encourage them to hold fast and true. If they are against, make it clear that you want them to change their vote and tell them YOUR STORY so they have an example of WHY we need change. It doesn't matter if you've already called them. Call them again. And then again next week. Don't stop until they get that this is life and death for you and your family. Because it is. Life. and. Death. Jennifer

Friday, February 12, 2010

Food, Health, and Jamie Oliver's TED Prize

This is long, but brilliant.

I've talked to you before about my struggle with my weight. I can't figure it out -- no fresh fruits and veggies, whole grains, nuts due to Crohn's; no meat due to gastroparesis; no milk due to lactose intolerance. But when I can't stay out of the bathroom in the mornings, I can't swim. And when I can't figure out what to eat, I eat crap.

I struggle with this. And here's what I know. I need help. Jennifer

Thursday, February 11, 2010

From the Washington Post -- It Ain't Over Yet

As party leaders tussle over the proposed bipartisan health care summit, nearly two-thirds of Americans say they want Congress to keep working to pass comprehensive health-care reform. Democrats overwhelmingly support continued action on this front, as do 56 percent of independents and 42 percent of Republicans.

Congress, can you hear us? WE STILL WANT HEALTH INSURANCE REFORM. GET IT DONE! jennifer

Wednesday, February 10, 2010


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 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

Monday, February 8, 2010

RIP Congressman Murtha

We lost one of the good guys today, very sadly. John Murtha (D-PA) was a man who grew up with pretty mainstream blue-collar roots, but he emerged as a champion of the litte guy. He opposed the war in Iraq outspokenly, and with some authority since he had served in the military himself.

He was plagued with ethical scandals, but never found guilty of any wrongdoing.

Indeed, in the end, he was one of the most powerful members of the House of Representatives. And he was a genuine, regular, nice guy. He will be greatly missed. Jennifer

February 25 Summit

Can President Obama break the health insurance logjam? We are about to find out. He will hold a summit on health reform on February 25. It will be televised and bipartisan, but it will start with the proposals on the table, that passed the House and the Senate, so the Republicans area already grumbling because it won't start from scratch.

Is he being naive in thinking a discussion with Republicans can be productive, or will he be hailed as the greatest deal maker in history? We have to wait and see. Jennifer

Tuesday, February 2, 2010

Keeping Health Insurance Reform on the Front Burner

Today, for the first time in a year or so, there is not one single item on Huffington Post about health insurance reform. If you read the papers closely and carefully, there are short items saying that leadership hasn't given up and they're trying to come up with a strategy. It's really not that hard, folks. Where there's a will, there's a way.

And so the issue is the lack of a will to get it done. Members of Congress worked VERY hard to get only a few days away from passage. The special election in Massachusetts was read as a sign that the public doesn't want reform. I don't believe that's at all true.

First, Massachusetts already has universal health care. So the fact that they don't feel the need as desperately as the rest of us is predictable and meaningless. Indeed, Scott Brown (the Republican winner) voted FOR universal health care in the State Senate. Doesn't sound like an anti-health insurance reform guy to me -- or at least he wasn't against reform when it counted to his constituents.

Second, while there is no question that Americans are afraid because of the jobs that have disappeared from the economy, plenty of that fear has to do with how the jobless are going to pay for health care. I get enough calls every single day from people without two nickles to rub together to prove that this is true.

Indeed, we are given false choices -- do we want Congress to focus on jobs or health care? Both, Dufus. Indeed, electronic health records creates jobs. Increasing incentives for chronic care management creates jobs. The health care sector has continued to grow even as the rest of the economy has tanked. It's not either/or. It's both and they're linked.

Third, I'd like to find ONE person who doesn't have health insurance and who has a pre-existing condition who doesn't think health care is an absolutely top priority. I don't believe there's a single one. The naysayers inside and outside of Washington are insured and/or healthy. They just don't get it.

But most of all, the lies are just outstanding. A government take-over of health care. That's all the anti-reformers had to say, over and over and over. It didn't matter that it wasn't true. Nothing much mattered as long as enough people recited that phrase. After the public option -- which was just that, an option -- died, there was not even the smallest kernel of truth to this "government take-over of health care" mantra. But apparently, truth isn't what matters most; fear matters even more.

I don't know how we're going to get this to the finish line. But I know that, if we don't, premiums will continue to increase, insurers will continue to deny coverage of medically necessary and appropriate treatment, people will continue to lose their insurance because of pre-existing conditions or their claims history or some bogus claim that they lied on their application -- the status quo will thrive. And we as a society simply can't afford that.

I read an article this morning about how our national debt is weakening our standing in the world. Part of that is that we have done NOTHING to rein in the cost of health care, like the rest of the world has done. Part of our debt is attributable to the outrageous cost of health care and health insurance. We cannot continue to outspend the rest of the world on health care, while not getting better health outcomes, if we are to remain competitive in the world.

I don't know how anybody can really dispute any of this. And really, I don't hear much of an argument. I just hear the word "no." The American people need to rise up and say YES to health insurance reform. Jennifer