Wednesday, October 28, 2009

Apology to America

I apologize, America. My Senator -- much as I hate to admit it -- has said that he would stand with the Republicans to block health reform with a public option. Yup, Joe Lieberman. The guy whom we elected despite the fact that he was trounced in a Democratic primary. The guy who was allowed to keep his committee chairmanships because he promised to vote with the Democrats on procedural motions -- and last time I looked, cloture was procedural. The guy who used to be a Democrat. The guy who supported John McCain for President and still believes we belong in Iraq, and said so in a speech to the RNC.

How the heck did liberal, justice-loving, rights-loving, humanity-loving Connecticut end up with this !@#@!$% as our Senator?

Connecticut is resoundingly in favor of universal healthcare. Indeed, we passed the Sustinet plan which, when implemented in two years, will provide health care for everyone in Connecticut. It passed the General Assembly. The Governor vetoed it. And then the General Assembly overrode her veto. The citizens of Connecticut have spoken.

Joe Lieberman has been around Connecticut politics for a long time. When he beat Ned Lamont, it seems to have emboldened him. So he endorsed John McCain despite the fact that Connecticut voters were strong supporters of Barack Obama. He has maintained his hawkish positions despite the fact that the Democrats voted him out of the party for it. Joe Lieberman seems to think he's invincible.

Let me say this loud and clear. If Joe Lieberman stands in the way of health reform with a public option, as he seems determined to do, I will make it my life's mission to ensure that he cannot be elected to any office ever again in the State of Connecticut. After all, if our Senator really betrays us with such colossal disregard for the views of his constituents, we here in Connecticut will owe all of America a big apology for re-electing him despite knowing that he didn't care about our views on Iraq.

Indeed, maybe we need a constitutional amendment that allows us to recall a Senator who cares so little for what his constituents believe. Jennifer

Wednesday, October 21, 2009

Total Calls -- AMAZING!!!


That's the total number of pro-reform calls made to Congress yesterday (or those are the ones that were reported -- there probably are more).

To all of you who thought you couldn't make a difference, I think you did. That's a huge number at a time when Senator Reid and Speaker Pelosi are in the final stages of drafting the bills that will be brought to the floor of both chambers.

Great job! Jennifer

Tuesday, October 20, 2009

WE DID IT (and are still doing it)!!!!!!!!!!!!!!!!

From Huffington Post:

It's not even noon on the West Coast and already Capitol Hill staffers say they're getting nonstop calls from constituents in support of President Barack Obama's health insurance reform. At about 2:15 EST, Organizing for America (OFA) surpassed it's goal of 100,000 phone calls to Congress, each one imploring representatives to vote for reform.

The nationwide "Time to Deliver on Health Reform" event is the most massive outpouring of support from Obama supporters since Election Day 2008.

Senate Democratic aides told HuffPost that their phones have been ringing off the hook. "We're getting completely crushed with calls, jamming our phone lines from the moment we opened," said one aide.

Another said they'd gotten "pretty much non-stop health care calls from OFA." A third also said their office was getting bombed and that four out of every five calls specifically mentioned the public option.

Only one aide contacted said that the calls had not been heavy. "We've had about 130 [health care] calls to the DC office today," said a staffer, explaining that on busy advocacy days the number can climb much higher.

Several aides said the callers seemed less informed about the issue than typical advocates, indicating that Obama is reaching a wide variety of voters who do not typically engage in the political process. Almost all of them called on the senators to support the President's health care plan. Several aides noted with irony that the president doesn't have a specific plan that he has endorsed - to the great frustration, in fact, of many Democrats.

After the election, Obama for America (OFA) became Organizing for America (OFA), an issue-oriented advocacy arm of the DNC whose primary purpose is to help make campaign promises a reality by cultivating public support for Obama's agenda.

Calls officially started at 9:00 AM Eastern, and supporters reached 40,000 calls about noon. From there, the numbers climbed quickly, hitting 85,000 around 1:30 PM and 95,000 around 2:00 PM -- fifteen minutes after that, 100,000.

To generate these numbers, OFA organized over 1,000 phonebank events across all 50 states. Yesterday, OFA said its phonebanks would make hundreds of thousands of calls to voters in order to generate 100,000 calls from constituents to Congress.

This morning's email to OFA members said, "If we hit 100,000 calls made or committed to, we'll send an unmistakable signal that this time, families must come before insurance companies. We'll be tracking progress toward our goal publicly -- make sure to report your call back to us so we can count it." (See the current count.)

President Obama will speak to OFAers across the country today at 8:00 PM Eastern to kickoff the evening phone banks. Sources within OFA say they are going to raise their goal to 150,000 calls to Congress but no official word yet.

Pick Up the Phone NOW!

Today is a national call-in day for health reform. Call the Capitol switchboard and ask to speak to your members of Congress. The number is 1-866-210-3678.

Pick up the phone. Now. Jennifer

Monday, October 19, 2009

Don't Rely on What You Hear/Read

We sent out an email blast today encouraging people to call their members of Congress tomorrow, the national call-in day for health care reform. I got the following response:

I am both suprised [sic] and shocked that someone with such a serious illness and a person running a non for profit would use public funding to promote your own political agenda. I am really dissapointed [sic] and wonder if those who give you funding would approve of what you are doing....personally if I was forced into what you are promoting, my son who has crohns disease may not be alive today as no hospitals "on my plan" in this area would give him the treatment he needed because of insurance. Because I pay for a plan that allow, I am able to go "out of network" to get the best possible care. If you read ANYTHING about health care reform, it is those with cronic [sic] illness that will be the most effected. Did u not hear congressman ERIC Cantors [sic] speech?

First, we don't receive one dime of public funding to fund our day-to-day work. In 2009 and 2010, we will have received a small grant to fund the chronic illness survey we are working on with the University of Michigan Center for Managing Chronic Disease. That's all the public funding we receive.

Second, supporting health care reform isn't about politics in the sense of Democrat or Republican. Indeed, Bill Frist, Mike Bloomberg, Bob Dole and Arnold Schwarzenegger all are prominent Republicans who are publicly in favor of health reform (although they have not endorsed any particular plan). However, Eric Cantor -- the person this emailer wants me to listen to -- is the House Minority Whip, the second-in-command Republican in the House of Representatives. Any question that he's a politician with an agenda? I don't think so.

Third, I have read the health care reform proposals, and this writer clearly has not. Let me say it again -- nobody is being "forced into" a public option. An option is just that, an option, a choice. People would be allowed to choose between a publicly run plan and a private plan. There would be several private plans from which to choose, some of which no doubt will cover out-of-network benefits. There is NOT ONE WORD in the health reform bills I've read that would eliminate out-of-network coverage, as my correspondent suggests.

I emailed her back. I sent links to; the Kaiser Family Foundation's health reform page; the Robert Wood Johnson Foundation health reform page; the White House health reform page.

Do you think she'll read anything I sent her?

It scares me when I see people -- people who've called here for help, so they know something about chronic illness -- opposing health reform because they don't understand it (not to mention assuming that I, who do this for a living, would not have read up on it myself).

So really, my message to you here is just this: Don't believe me OR Eric Cantor. Read, listen, judge for yourself. Read not only the New York Times (i.e., liberal): also read the Wall St. Journal (i.e., conservative).

This may be the most important public policy debate of our generation. Don't have a knee-jerk reaction. Don't label the "fors" Democrats and "againsts" Republicans. Don't assume Eric Cantor is right any more than you assume Nancy Pelosi is right. Don't assume anything. Educate yourself enough that you can make an informed choice.

I'm confident that I've studied this well enough so you can count on what I've told you the various drafts say, but don't assume I'm truthful or accurate. Read. Listen. Hear diverging views. When Betsy McCaughey or Sarah Palin talks about "death panels," check it out. After all, Ms. McCaughey said it appeared on page 425 of the House Bill, so it was easy enough to prove that no such thing appeared on page 425, section 1233 (they posted it without page numbers so you have to scroll down to section 1233, end of life consultations -- which, as you can see, would have reimbursed Medicare providers for talking to patients about things like living wills, but which would NOT have created panels to decide when to "pull the plug"). If you don't have time to read for yourself, then go to the non-partisan cites linked above, and the always-reliable independent

I'm not telling you to just take my word for it. I'm so sure that I've been accurate in my statements in this blog that I welcome your researching and reading. I've told you when I've been unhappy with Senator Baucus's bill. I've told you that I favor a public option and why. But please, don't take my word for it.

This legislation will affect every single person in the United States. If ever you were going to get informed and involved, now's the time. I trust you to make the right decisions once you know the facts. So go get 'em. Jennifer

Friday, October 16, 2009

National health reform call-in day

Tuesday October 20 will be a national health reform call-in day. Please mark your calendars. You can find contact info for your member of the House here, and your members of the Senate here. Or you can use the toll-free number to the Capitol switchboard, 1-866-210-3678.

What should you say? Well, as you know I'm strongly in favor of a public option. This is not a government take-over of health care. What would happen is that all the private plans would be offered through the exchange, a marketplace where you could view and compare available plans. In addition to the private plans, a public plan would be offered. If you wanted to choose the public plan, you could. If you're happier sticking with Blue Cross or United Healthcare or Aetna or CIGNA -- if you're one of the lucky ones who doesn't see coverage denials on a regular basis -- you can stay with them. But the public option would cost less because no executives would be paid $1.5 billion bonuses for denying coverage. Administrative costs of a public option would, therefore, be less and so premiums would be lower. In order to compete, the private plans would then have to lower premiums.

There are other ways to force private plans to lower premiums, but they're not even on the table. You could limit executive pay, for example. You could cap premium rate increases at the same rate at which incomes grow each year. But a public option that would compete with private options is more in synch with free market ideals. And a public option would save over $25 billion over 10 years, or even more if reimbursement rates -- the rates paid to doctors, hospitals, labs, etc. -- were tied to Medicare rates.

So if you agree that it's important to have robust competition, you might tell your members of Congress that you support a public option.

If you have a story -- if you've suffered at the hands of health insurers -- tell your story.

If you feel strongly about elimination of pre-existing condition exclusions and eliminations of lifetime caps, say so. If you want these sorts of insurance market reforms to take effect immediately, that's a really important point because otherwise, they won't take effect until 2013.

If you agree that private plans that administer Medicare shouldn't be paid any more than it costs for the government to administer Medicare (a savings of about $220 billion), chime in.

And if you just want to say we need change now, that would be great.

What you should NOT do is nothing. If everybody who reads this makes a call to his or her two Senators and one member of the House of Representatives, we may actually make a difference. Three phone calls. They'll be short -- the staff on the Hill doesn't want to have long conversations. It won't take you long. Indeed, if you'd rather email than call, go for it. But please do something.

If you care about chronic illness, you have to be for reform. It's as simple as that. Jennifer

Tuesday, October 13, 2009

Breaking News: Finance Committee Passes Reform Bill

The Senate Finance Committee passed its health reform bill on a vote of 14-9. Senator Snowe was the only Republican voting for the measure.

For the first time in the history of the United States, all five committees with jurisdiction have passed health reform, paving the way for consideration by the full House and Senate.

We are making progress. Jennifer

Breaking News: Senator Snowe will Vote YES!

The Republican Senator from Maine, Olympia Snowe, has said that she will vote in favor of the Senate Finance Committee bill when they vote later today. She will be the first and only Republican to vote in favor of any health insurance reform proposal.

Call or email her to thank her, even if you aren't from Maine. Her phone number is (202) 224-5344. Jennifer

Finance Committee -- Call your member

Today, the Senate Finance Committee will vote on its not-so-great plan for health insurance reform. It's not great for a lot of reasons -- it doesn't take effect until 2013, there will be a tax on so-called "Cadillac" plans even when the reason the plans are expensive is insurance company excess, the subsidies don't cover enough people, and most of all, there's no public option. But it's better than the status quo. And it's not the final bill -- it's only the product of one of five committees with jurisdiction. But before anything else can happen, the Finance Committee has to vote out a bill. So moving forward today is crucial.

If your Senator is on the Committee, now's the time to pick up the phone. Here is a list of the Finance Committee members:


Max Baucus (MT)
Jay Rockefeller (WV)
Kent Conrad (ND)
Jeff Bingaman (NM)
John Kerry (MA)
Blanche Lincoln (AR)
Ron Wyden (OR)
Charles Schumer (NY)
Debbie Stabenow (MI)
Maria Cantwell (WA)
Bill Nelson (FL)
Robert Menendez (NJ)
Thomas Carper (DE)


Chuck Grassley (IA)
Orrin Hatch (UT)
Olympia Snowe (ME)
Jon Kyl (AZ)
Jim Bunning (KY)
Mike Crapo (ID)
Pat Roberts (KS)
John Ensign (NV)
Mike Enzi (WY)
John Cornyn (TX)

You can find their phone numbers here.

The bill has been debated and amended, and the non-partisan Congressional Budget Office says it will save $81 billion dollars over 10 years.

The insurance industry has released a totally biased report saying that premiums will increase with this bill because the fines on individuals who choose not to purchase insurance are not large enough and they're acting like a bunch of children who didn't to sit with the popular kids at lunch. As long as reform is an economic boon for the insurance industry, they're happy to watch it happen and not try to block it. The minute it looks like they aren't getting everything they want, they change their tune. The report is a farce. Footnote 2 says they are not considering the effects of subsidies and taxes and other revenue-enhancing features of the Finance Committee bill. Well, sure. If all you look at are the parts that cost money, and you ignore all the parts of it that save money, the result looks lop-sided. DUH!

I can only hope that there are enough people like me reading and writing and doing their best to get the truth out to counteract this biased negativity.

The truth is, folks, that no matter what Congress passes, it's likely to need tweaks down the road. Medicare is constantly being tweaked. That's of necessity. This is something of an experiment. Parts of it will work and parts of it won't. I'm nervous, and you have a right to be as well.

But what's absolutely clear is that we cannot maintain the status quo. We can't have a health care system the costs of which grow faster than the rate at which our income grows. We can't afford premium increases of over 20% every year forever. We can't have sick people -- people with pre-existing conditions -- unable to get insurance.

We need change. If we can get a public option out of Washington, premiums will decrease. Indeed, a public option is a complete response to the insurance industry's so-called report because it would be a lower-cost alternative that people could choose, so for insurers to compete, they would have to lower prices.

But even if we can't get that this time around, just the elimination of pre-existing condition exclusions and lifetime caps on benefits would be a huge step forward.

So do your civic duty. Call your Senator today and let them know how you feel. If enough people call, we can make a difference. So just do it. Jennifer

Monday, October 12, 2009

Insurers Fight Reform -- The Inevitable

It was only a matter of time.

As long as they thought that the costs of health care reform would all fall on the government, the taxpayers, individuals, drug companies, and hospitals, the insurance industry was silent, even mildly supportive.

No longer.

When the Senate Finance Committee cut the penalties people would have to pay if they don't buy insurance, the rumblings started. The penalties went from $950 for an individual and $3800 for a family down to nothing for the first year, and then $200 for an individual and $1900 for a family eventually, on an increasing basis over time.

And the insurance companies started to yelp. If they have to accept people with pre-existing conditions, they need, they say, the young healthy people, too -- the people least likely to buy insurance even if there's a mandate. They'd rather pay the $200 fine than spend $300-$400 per month on a premium. They're young. They're short-sighted. They don't hear the calls I get from young people who found out they had a chronic illness after having foregone health insurance, and now they can't find anything to cover their pre-existing conditions.

The insurance companies were willing to take us sickos as long as they got these healthy kids. But with penalties this low, they aren't assured they'll get the healthy. So now, they don't want to have to take people with pre-existing conditions.

And they hate the tax on so-called Cadillac plans -- plans that cost $8000 per year for an individual and $21,000 for a family. I'm no fan of this tax, either, but that's because I understand that many plans are this expensive because insurers charge groups with sick enrollees more, even if they aren't supposed to. The insurers hate it because the tax is on them, not on the insureds.

And finally, the insurers don't like the cuts to Medicare Advantage plans. That's because private insurers run Medicare Advantage plans. They've been making out like bandits on these plans, getting paid more by the federal government than it costs the government to provide the same services under traditional Medicare. We advocates knew the Medicare Advantage plans were rip-offs because we are the ones who heard from the patients who faced denials of coverage of things that would have been covered by traditional Medicare. Medicare Advantage plans were rip-offs all along. The government finally figured that out and decided to take away their profits. Boo hoo.

Here's what I think. What's bad for insurers is probably good for the rest of us. I'm not overjoyed by the Senate Finance Committee bill, but I'm surely not going to mind at all if the insurers have to feel some of the pain. After all, if they hadn't put profit motive over health all along -- if they hadn't denied coverage to people with pre-existing conditions, if they hadn't denied coverage of things that were life and death necessities -- we might not have needed health insurance reform at all.

Most of us have to live with the consequences of our actions. Sorry, UnitedHealthcare. Sorry, Aetna and CIGNA. So so sorry, Blue Crosses who like to pretend that they're better than the rest but most definitely are not. Sorry you'll have to pay part of the price for the damage you've done.

It was inevitable that the insurers would oppose reform efforts. It only took this long because they really thought they would walk away from this unscathed until the Senate Finance Committee bill was written and then amended. Now that they see the writing on the wall, the inevitable screaming has begun.

Let's see if our elected officials are ready to stand up to them. Jennifer

Thursday, October 8, 2009

Deep Throat . . . er . . . Pocket?

When my phone rings at 7 am, it usually means something's wrong. Today, it meant something very different.

A gentleman who would not give his name said he works for Care Corps International, a third-party payer that also does medical necessity reviews for insurance companies. In other words, he is the first-line reviewer deciding whether a request for prior authorization for anything from a drug to a test to a procedure will be approved. He saw my name and phone number in AARP Magazine in an article about health insurance denials of coverage and he wanted to tell me the "other side of the story."

He called to complain about doctor's offices. He said offices with "employees with foreign-sounding names" provide less good care. He said he often calls a doctor's office for more information and, instead of getting a medical professional on the phone, he gets "someone without a high school education." He remembers one call that will "stay with [him] always," in which he asked a doctor's office about the patient's symptoms and the person on the other end of the line said "huh," apparently not understanding the question.

He complained that his company often faxes a request for additional information to a doctor's office, and all they get back is the same information they were given in the first place. He was very annoyed that doctors won't take the time to call them back and explain their treatment plan. When he has questions he can't get answered, he explained, the claim gets denied unnecessarily. And it's the doctor's fault, not his or the insurance company's.

Oh -- and by the way -- especially when someone's on Medicaid, he said he believes "we" should have a say in the medical care they get.

When I suggested that these reviewers are a big part of the problem, leading to unnecessary denials because their requests for additional information are so burdensome, he blurted out the following. He is audited monthly. He has to dispose of a certain number of cases per hour. Each health plan has different criteria for medical necessity, so he has to keep track of all of them. If his "certification rate" -- the rate at which claims are approved or denied -- is too low, he can lose his job.

I don't know about you, but I'm not thrilled with the thought that medical necessity decisions are being made (1) by someone with a bias against foreign-sounding names; (2) by someone with a bias against people on public programs like Medicaid; (3) by someone who denies medical necessity because the person at the other end of the line doesn't understand his questions; (4) by someone whose job performance is measured by the number of claims he processes per hour; and (5) by someone who has to "certify" (or not) a certain number of claims per hour. Nor am I thrilled to be reminded that, a good part of the time, our doctors' offices don't provide reviewers with the information they need to approve the claims (which is why I ALWAYS tell patients they have to gather and submit their medical records with their appeal).

My anonymous caller -- who said he didn't expect anybody to answer the phone at 7 am, and had planned only to leave a message -- thought he was giving me information that should make me blame medical offices, when all he did was further confirm that patients are getting screwed from all sides.

And think about it. Why are the criteria for medical necessity different for each insurance company? If we're talking medicine -- science -- shouldn't the criteria be the same?

But of course, we're not talking medicine. We're talking money. Jennifer

Wednesday, October 7, 2009

Breaking News - Congressional Budget Office Scores Finance Committee Bill as REDUCING the Deficit

Health care legislation drafted by a key Senate committee would expand coverage to 94 percent of all eligible Americans at a 10-year cost of $829 billion, congressional budget experts said Wednesday, a preliminary estimate likely to power the measure past a major hurdle within days.

The Congressional Budget Office added that the measure would reduce federal deficits by $81 billion over a decade and probably lead to "continued reductions in federal budget deficits" in the years beyond.

The report paves the way for the Senate Finance Committee to vote as early as Friday on the legislation, which is largely in line with President Barack Obama's call for the most sweeping overhaul of the nation's health care system in a half-century.

Fatigue & Chronic Illness

We're starting to get some of the preliminary data from our chronic illness survey (and if you haven't taken it, PLEASE do -- there's a version for patients and a version for caregivers). It's no surprise to me that people are saying that their major obstacle is fatigue.

I know my most major obstacle is fatigue. I traveled to Atlanta this week-end and spoke to a wonderful group of families who have a child with inflammatory bowel disease. I talked about school law, family and medical leave, and health insurance. For the first time in my life, I got wheel-chaired around the airport (I have Crohn's-related arthritis in my knees, a problem with my lower back that's made my right leg both numb and painful at the same time, like pins and needles). The Atlanta airport is huge, so although I don't like to admit that I need help, I did this time.

Due to my gastroparesis, I pretty much don't eat when I'm going to be traveling. This time, I ate my usual breakfast on Friday morning at home at about 7 am, and then I ate breakfast on Saturday morning at my hotel at about 6 am, and that's what I ate for the two days (good for my diet!). So that contributes to my fatigue.

And I gave 2 talks, 40 minutes each. And then took questions, and hung around to talk to parents who wanted to talk about their individual circumstances. By the time I was finished, my knees, ankles and feet were throbbing, and I was really fried.

I got home at about 10 pm on Saturday night. By the time I unpacked and got organized, it was about midnight when I went to bed. I stayed in bed until Monday morning. That should have been a good rest, eh?

I'm so tired I could cry. My Crohn's is acting up a bit, but not terribly. I am disadvantaged this week because I have a wound on my hip (not sure how I got it), so the doctor said I can't swim because I can't take a chance of it getting infected. I know swimming helps my energy level. But no matter what, when I have a week-end like that when I have an extra long day on Friday (I didn't get to my hotel until 10 pm) and Saturday (6 am to 10 pm), I don't bounce back so easily.

Basically, I can work because I do absolutely nothing else. I go to bed early and I spend my week-ends in bed. Even though I don't sleep a lot of hours, I do rest. And when I don't, I pay. So today, I've already gone to the bathroom too many times. My knees are killing me. My leg is numb. And I have a migraine "aura" (like you're seeing through a pool of water). I'm trying to work, but I really feel like I belong in bed. And it's only Wednesday.

People don't get how exhausting chronic illness is. You can't really see fatigue (unless you count the rings under my eyes). It doesn't show up on blood tests or anything. I can't prove it. But I know that, when I talk to patients, they always stress how tired they are. It's not sleepy tired -- it's bone tired. I wrote a book called Friday Tired -- so tired that every day feels like Friday. And I sure do wish Friday would come.

On days like today, I don't know how to be the person upon whom everybody else relies. Somehow, I manage to get through the day, but the effort is tremendous. By Friday night, I'll be a basket case. And while other people are out all week-end looking at Fall foliage, shopping, seeing friends, Emily (the cat) and I will lie in bed watching crappy TV or crappy movies, sleeping as much as possible, and trying to figure out how to avoid Monday.

I don't know anybody with a chronic illness who doesn't get this. And I don't know too many people who don't have chronic illnesses who do. Jennifer

Friday, October 2, 2009

Oh, What a Week It's Been

As expected, this week saw a lot of activity in the Senate Finance Committee. Although the Committee voted down two different versions of a public option, they passed sort of a mini-public option, proposed by Sen. Maria Cantwell, that would provide government-run insurance to people who do not qualify for Medicaid whose income is under 200% of the federal poverty level (or about $20,000). In addition, the Committee voted to limit health insurance executive salaries to $500,000 per year. About 2 million people were exempted from the requirement to purchase insurance if doing so would create a financial hardship, and the penalty for those who fail to do so have been decreased dramatically, to $200 in 2014. Financial hardship would be found to exist if insurance costs more than 8 percent of income. In addition, discounts would be offered to people who quit smoking or lose weight (and, by the way, my diet is going well -- slow, but steady -- 8 pounds so far).

The Finance Committee finished its mark-up at 2:15 am this morning. The Congressional Budget Office will "score" the bill, reporting back on how much it will cost. Then the full Committee will vote next week. Once that happens, the Finance Committee bill and the Senate HELP Committee bill will be merged into one and debate on the Senate floor will begin. The Columbus Day recess has been canceled, so debate is expected to begin during the week of October 12.

Not soon enough for me!

I have gotten more really big new files in the last few days than I have in a very long time. I keep getting calls from people whose insurer has decided not to cover a medication when the medication is being prescribed for a use other than the one for which it is FDA approved. These are called "off-label" uses. As a matter of law, the FDA labeling governs marketing of medication, not prescribing or insurance coverage. Although the FDA itself encourages doctors to try off-label uses, recognizing that this often is the only way to learn what uses may be found for a drug, insurance companies increasingly are using the fact that a drug is being prescribed off-label as an excuse to avoid payment.

I've also been getting a lot of calls from people who've already exhausted all of their appeal rights, so they really have no option but to give up or sue. Suing health insurance companies is very difficult; in general, insurance companies are presumed to have been rational and reasonable. In addition, in most cases, it's less expensive to pay for the drug than it is to sue an insurance company.

And then there's the woman who was scheduled for a double mastectomy for breast cancer whose insurance was canceled four days before the surgery was scheduled to occur.

And the lupus patient whose insurance was entirely revised, excluding coverage of her lupus because it was a pre-existing condition when, in fact, the patient had minimal symptoms before purchasing her insurance -- so minimal that she'd never even mentioned them to a doctor.

Then there's the health insurance plan that has denied a treatment as "experimental," but which refuses to provide the patient with the plan's definition of "experimental" -- a clear violation of law.

Are the insurance companies campaigning to see just how outrageous they can be right when Congress is debating health insurance reform? Because that's surely how it looks to me. They seem to be increasing the pressure on people just when these sorts of stories are making them the targets of health insurance reform. In a sense, I suppose the more outrageous they are, the stronger the case for health insurance reform. Still, these stories break my heart.

I wish the members of Congress who are opposed to strong reform measures would sit in my chair for one day. Jennifer