Friday, June 29, 2012

Crazy Talk

We've all heard already about the people who tweeted that they were going to move to Canada after the Supreme Court's health reform decision.  Of course, Canada has government run health care.  Rush Limbaugh says he's moving to Costa Rica -- another country with universal health care. 

But there are other crazies, and some of these are just too ridiculous to pass up.

Conservative firebrand Michael Savage says Justice Roberts's cognitive abilities are compromised by the medication he takes to prevent epileptic seizures, thereby explaining his vote in favor of the constitutionality of the individual mandate. 

Michelle Bachmann said "Anytime the Supreme Court renders something constitutional that is clearly unconstitutional, that undermines the credibility of the Supreme Court."  Um, the Supreme Court decides what's constitutional.  By definition, if they say it's constitutional, it's constitutional. 

I'm sure there will be more, but after reading Michael Savage's comment, I had to go ahead and post.  Jennifer

The Day After the Day

I'm thoroughly exhausted.  There was the anticipation, the fear that we would lose it all.  The elation at winning.  The concern about giving states like Mississippi, Florida, Texas the right to opt out of the Medicaid expansion.  The need to explain, over and over again, that the mandate does not require people to buy insurance they can't afford; it means to make people who can afford insurance pay their own way if they choose not to do so, so we the taxpayers will not have to foot the bill if they land in the hospital due to illness or injury, as we do now.  I want you all to feel as elated as I do that those of us with pre-existing conditions -- meaning everyone with a chronic illness -- are one giant step closer to having equal access to health insurance.

Of course, there's a ton of commentary and I can't possibly cover it all.  I posted Atul Gawande's New Yorker piece in a separate post below -- it's the best piece I've read about health reform and what it means to people like me and you.  But here's a smattering of what others are saying.  

The GOP predictably is using this as a rallying cry -- they promise to repeal the law if Governor Romney is president and they hold the House and take the Senate.  That's fair -- had we lost, they'd have used it to argue that President Obama made a huge mistake, and President Obama would have used it as a rallying cry, too -- vote for me so I can salvage something of health reform.  Sarah Palin heralding the Supreme Court decision because it will fire up conservatives is predictable -- as if conservatives weren't already fired up?  The fact is that the closer we get to implementation, the harder it will be to turn back.  Under any circumstance, health care was going to be part of the November elections.  Still, there is no question that this was a victory for President Obama.  More importantly, though, it was a victory for us.  I have to wonder, though -- how will Governor Romney shake off the fact that he signed Massachusetts' reform law, paving the way for the federal lawThe first repeal vote is scheduled for July 11.  It won't go anywhere in the Senate, and if it did, President Obama would veto it, but it should remind us of the need for continued vigilance. 

We have to be vigilant about the lies, too.  Senator Marco Rubio warned yesterday that the IRS is giong to be coming after people who don't buy insurance.  This is utterly ridiculous.  If you don't buy insurance, you're going to have to make a payment to the IRS with your annual tax return.  There is no criminal penalty whatsoever.  No jail.  No prosecutions.  Just collection of a tax.  And only for those who could afford insurance and choose not to buy it. 

Who'd have thought Chief Justice Roberts would be the hero of it all?  Pundits are saying it's in line with his view of the importance of judicial restraint when assessing an Act of Congress.  Still, it was brave, knowing full well that he would suffer the wrath of many GOP Senators who voted to confirm him. His vote in this case surely will be a huge part of his legacy. 

The ruling on the Medicaid expansion is going to be tough to swallow in states that provide few benefits to their poor residents.  Basically, the Court said that Congress cannot threaten to take away a state's Medicaid funding if it doesn't comply with the Medicaid expansion that would cover adults up to 133 percent of federal poverty level.  That means that states like Mississippi, Florida, Texas may opt out of the expansion, leaving millions of the most vulnerable without coverage.  Because Congress anticipated the Medicaid expansion, subsidies were designed to be available only to people at 100% of federal poverty level and up, leaving people under 100% of federal poverty level with no coverage.  The current Congress surely isn't going to fix this, so we will have to work hard in the states to mobilize people to tell their elected officials that this matters to them. 

I have to say that I was really moved when i read that Nancy Pelosi's first phone call was to Vicki Kennedy, the late Senator Ted Kennedy's widow.  Now Teddy can rest, she said.  This was the cause of his lifetime, and it remains largely intact.  His legacy lives on. 

And now I'm gonna rest, too.  Jennifer

The best piece I've read on health reform so far

The ever-brilliant and compassionate Atul Gawande explains the moral imperative.  He makes it so clear.  I hope you will read this one.  Jennifer

Thursday, June 28, 2012

In Sum, A Day Of Surprises

Today has been a day full of surprises. 

While I thought there was a chance that the health reform law would be upheld, I did not expect it to be due entirely to Chief Justice Roberts's vote.  Justice Kennedy typically is thought of as the Court's moderate, who swings right or left depending on the issue.  Justice Roberts is a conservative.  To see him join the Court's liberal wing, contrary not only to the other conservatives, but also to Justice Kennedy, was not something I expected to see.

And while I thought the individual mandate might be upheld, I did not for a second think that it would be upheld as a valid exercise of Congress's power to impose taxes.  Although this argument was in the Government's briefs, no court had given it more than passing attention.  My surmise is that Justice Roberts could not agree to vote with the liberals to find the mandate constitutional under the Commerce Clause, and so this was a sort of compromise that he could live with.  Certainly, as Justice Ginsburg's opinion (agreeing in part and disagreeing in part with Justice Roberts) so eloquently puts it, the liberal wing of the Court would gladly have upheld the mandate under the Commerce Clause -- and the four dissenters would not have upheld the mandate under any justification.  Had Justice Roberts not found a solution that the liberal wing of the Court could live with, he could not alone have upheld the mandate.  It could have been 4 Justices for, 4 Justices against, and 1 Justice for but for a different reason -- a result that would have caused great chaos as we all tried to understand what that meant.  Justice Roberts was creative and practical in relying on this other ground.

Perhaps most surprising is the decision on the Medicaid expansion, which clearly is not a victory for those of us hoping to reach near-universal coverage.  The Court has NEVER -- not once in the history of America -- struck down a statute that was passed under the Spending Clause.  But here, Chief Justice Roberts, surprisingly joined by liberal Justices Breyer and Kagan, decided that threatening to terminate a state's Medicaid funding if they did not comply with the expansion of Medicaid to cover all adults up to 133 percent of the federal poverty level was coercive.  Before the federal government can force a state to spend its own money -- even a relatively small amount of it since the Medicaid expansion is almost entirely federally funded -- it has to give the states a chance to opt-out.  So the Court upheld the Medicaid expansion, but not the federal government's ability to strip a state of its Medicaid funding if the state chose not to comply.

And so, sadly, there will be states that will opt out, as they now are able to do.  States that are vehemently against health reform -- Mississippi, Arkansas, Florida, Texas -- also have large percentages of uninsured residents, many of whom are below 133 percent of the federal poverty level.  Those people will remain uninsured if those states opt out.  And because Congress anticipated that they would be covered by Medicaid, those folks are not eligible for subsidies, as best I can tell. 

So as always, I end with a plea for your continued vigilance.  If you're in a state where reform was strongly opposed, you need to contact your state legislators and tell them you want them to implement the Medicaid expansion.  Without it, some of the most vulnerable among us will be left uninsured, at least for now. 

Of course, Governor Romney already has pledged to take steps to repeal the law if he is elected President.  So we're not totally out of the woods yet.  It is my fervent hope and belief that, the further along we get into implementation of health reform, the harder it would be to repeal it.  Certainly, once exchanges are up in October 2013 and pre-existing conditions are covered in January 2014, it will be impossible to turn back.  But there could be a time during which Governor Romney is President, both the House and the Senate are comprised of a majority of anti-reformers, when the law could be repealed.  By that time, I don't think anybody other than the outliers who steadfastly believe that the federal government should be slashed drastically will really want to turn back.  But you never know.

After a day of these sorts of huge surprises, we must conclude that anything is possible.  So we have to continue to stand strong to ensure that people with pre-existing conditions finally are treated as equals.  Jennifer

NO, you are NOT required to buy insurance if you can't afford it

Let me get this one out of the way quickly.  People all over the internet are complaining that the individual mandate is going to make them buy something they can't afford.  This is NOT TRUE.

Section 5000A says you have to have "minimum essential coverage" -- insurance, Medicaid, Medicare, etc. -- or you pay a penalty.  The amount of the penalty depends on a lot of things, including your income.

What people are missing is the EXEMPTIONS.  The law says "NO penalty shall be imposed under subsection (a) with respect to (1) INDIVIDUALS WHO CANNOT AFFORD COVERAGE."  That's a direct quote from Section 5000A(e)(1).  If you would have to pay more than 8 percent of your household income EVEN WITH the government subsidies that will be available to all Americans who earn up to 400 percent of federal poverty level (between $80-90,000 per year) -- so if the portion YOU have to pay is more than 8 percent of your household income and you still refuse to buy insurance -- THEN AND ONLY THEN would you have to pay a penalty.

Understand that, currently, if someone doesn't want to buy insurance -- they can afford it but they just don't want to -- and they get sick or in a car accident and end up in an emergency room but then they can't pay their bill, the federal government pays that bill with taxpayer dollars.  It's called uncompensated care, and the federal government pays BILLIONS of dollars to hospitals to cover bills that aren't paid.  That's your tax dollars at work.  Is it fair for someone who CAN afford to buy insurance to dump that cost on the rest of us?

One of the original plaintiffs in the case against the health reform law said she didn't want to buy insurance.  While the case was pending, she got sick.  She couldn't pay her medical bills.  She filed for bankruptcy, leaving the taxpayers holding the bag to pay for her care.  Is that fair?

Far from being unfair to people who cannot afford insurance, the law will help those people with very substantial subsidies -- and stop forcing taxpayers to foot the bill for people who figure they can game the system and avoid paying for health insurance or health care!  Sounds pretty fair to me.

Still reading.  More later.  Jennifer

Here It Is!

The Court upheld the law in its entirety, with the power of the federal government to terminate states' Medicaid funding read narrowly.  5-4 with Chief Justice Roberts voting with the more liberal Justices (Ginsburg, Breyer, Sotomayor and Kagan). 

"Our precedent demonstrates that Congress had the power to impose the exaction in Section 5000A under the taxing power, and that Section 5000A need not be read to do more than impose a tax. This is sufficient to sustain it."  So people aren't being forced to buy insurance; they just get taxed if they don't.

The Court upholds the Medicaid expansion but says the federal government can't take away their existing Medicaid funding if they don't.  "Nothing in our opinion precludes Congress from offering funds under the ACA to expand the availability of health care, and requiring that states accepting such funds comply with the conditions on their use. What Congress is not free to do is to penalize States that choose not to participate in that new program by taking away their existing Medicaid funding."

I don't have the opinion yet - this is all from Scotusblog, but it's being reported everywhere, so I think we can be certain that we're out of the woods!


More to come later, once the opinion is released and I read it.  But this is a great day for people with chronic illnesses.  Indeed, a great day for America.  Jennifer

For All You Wonks

I admit it.  I'm obsessed with today's Supreme Court ruling.  This morning, I read the numerous predictions and analyses mostly to make the time pass until we know the only answer that really counts.  In case you're also looking to pass the time -- or maybe try to make a prediction -- here's a little light reading.

Whatever happens today is likely to affect every single American in one way or another.   It will define the future of the American health care system, according to HuffPo's headline.  The law already has done so much -- eliminating lifetime caps on benefits, covering kids to age 19 with pre-existing conditions, creating the Pre-existing Condition Insurance plan, covering kids to age 26 on their parents' plans, free preventive care, big savings for seniors in Medicare Part D -- and on and on.  Indeed, how many insurance appeals did we win because we now have a right to appeal to an independent review organization that can overturn the insurance company?  Grants for innovative practice models, grants for consumer assistance programs, grants to community health centers to beef up the delivery of primary care -- on and on. 

And that's before the big stuff even takes effect -- coverage of pre-existing conditions, premiums based only on geography and age, not gender, not health status.  Exchanges where you will be able to compare and purchase insurance plans.  A single, uniform summary of benefits and coverage that will be the same for every plan, making comparisons easy.  An essential health benefits package to make sure that the insurance we buy has value and covers what we need.  Medicaid expansion.  Subsidies to help people pay their insurance premiums. 

The truth is that the American people don't know the truth about health reform. More than half of all Americans think the current system stinks -- but they aren't in favor of reform, either.  They want a do-over on health reform.  I continue to believe that's because most of them don't understand it.  Someone I know who's unemployed and married to a pretty sick guy who's also unemployed said she's against the individual mandate because they shouldn't be forced to buy something they can't afford.  But there's an exemption from the mandate for people who can't afford insurance.  And for a couple like this, they will be covered by Medicaid for free.  It sort of makes me want to talk one-on-one to everybody who's against reform (except the outliers, who just want to eliminate as much of the federal government as possible, of course). 

So what will we know after the Court rules?  If they uphold the law, nothing changes.  But if they strike down all or part of the law, there will be huge uncertainty.  What will Congress and the White House do if the mandate is struck down and only the mandate?  Or if we lose the mandate, coverage of pre-existing conditions, and the prohibition against using health status to calculate premiums?  If the whole law is struck down, what will happen to kids up to age 26 who are on their parents' policies?  What about the Pre-existing Condition Insurance Plan?  What about all the grants that have been awarded?  Complete chaos.  Which is one reason I feel nearly certain that the entire law will not be struck down. 

The states -- especially those, like Connecticut, which have invested heavily in reform -- have a lot to lose here, too.  Our Governor Dannel Malloy says that Connecticut could lose $100 million  and 500,000 people could lose health care coverage. But we have at least as much to gain if the Court upholds the law, as do all of the states.

One thing's for sure, though.  There's going to be a lot of spin, a lot of advocacy the minute the decision comes down.  Advocates from all points of view will be waiting outside the Court to talk to press.  Some organizations already have multiple press releases ready, trying to account for every possibility.  And, of course, the presidential campaigns will be all over the decision, trying to use it to energize their base, no matter what the result isMany see this as a referendum on President Obama's first term.

Predictions?  I start with Linda Greenhouse, who's covered the Supreme Court for as long as I can remember.  She's smart, she knows the Court -- and she predicts the Court will uphold the law.  We can hope, right?  Some say the Court may strike down the whole law.  I don't believe that for a second.  To do so would undermine the Court's credibility to such a huge extent -- I don't think Chief Justice Roberts is going to let that happen.  Many former clerks and law professors think the mandate and only the mandate is going down; still others -- including my wonderful colleague Tim Jost -- think the law will be upheld

Me?  I'm pretty close to certain that the whole law won't be struck down.  I'm equally convinced that the Court will reject the challenge to the Medicaid expansion, and that the Court won't use the Anti-Injunction Act to duck making a ruling at all.  So we're left with the mandate.  In my good moments, I think the Court will uphold the whole law.  In my scared moments, I think the mandate goes down -- and then, it's just a question of whether we also lose coverage of pre-existing conditions and premium rating without regard to health status.  If pushed to bet, I'd say that, if the mandate is stricken, it will be only the mandate. 

Three hours, and finally, the wait will be over and the hard work will begin anew.  I'll bring you the decision the minute it's announced, and will follow with summary and analysis of the decision over the course of the day.  It's going to be a long day -- but hopefully a good one.  Jennifer

The Day. Setting the Stage

Before we get into the Court's ruling, I want to remind you again of exactly what's about to happen. 

Remember, there are four issues.

First, is this lawsuit barred by the Anti-Injunction Act?  If it's a "tax" under the definition of "tax" in the Anti-Injunction Act, then it can't be enjoined until it takes effect -- 2015.  Nobody thinks the Justice are going to throw out the case on that ground.

Second, the individual mandate.  Can Congress make us buy something even if we don't want it?  Precedent says that Congress can regulate anything that has an effect on commerce -- even an indirect effect.  Growing pot in your backyard for personal use can be regulated by the federal government; growing wheat on your farm for personal use can be regulated by the federal government.  So why can't Congress regulate how you pay for health care -- especially when, if you don't have insurance and you get sick or injured and can't afford to pay your hospital bills, the taxpayers pick up the tab?  More importantly, from my standpoint, is this:  If Congress decides that, in order to require coverage of people with pre-existing conditions, there has to be an individual mandate to bring healthy people into the pool, why isn't that a "necessary and proper" exercise of Congress's powers?  I don't know what the Court is going to do here, but this is the lynchpin of the case.

Third, if the individual mandate is unconstitutional, how much of the law should be struck down?  The states argue the whole law should go.  I don't see that happening.  It's a huge law with a lot of provisions that do not depend on the individual mandate.  But the Obama Administration (unwisely, in my opinion) told the Court that if it strikes down the individual mandate, it should also strike coverage of pre-existing conditions and a prohibition on the use of health status to set premium prices.  I'm hoping the Court takes an all or nothing approach; rather than getting into the details of the law -- all 2700 pages of it -- the Court could strike down just the mandate and let Congress decide what, if any, other parts should be struck down.  As long as President Obama is in office, he would veto any GOP attempt to strike down the whole law, and with Congress becoming essentially paralyzed, it's unlikely they will be able to do much of anything.  So we might keep coverage of pre-existing conditions even if the mandate is struck down.

Finally, the Medicaid expansion, which is paid for by federal dollars for the first few years, and ultimately, the most the states will pay is 10%.  The states are screaming now about that 10%.  But this is an area where Congress has always had all the power it wants to exercise.  To strike down the Medicaid expansion, the Court would have to take aim at Medicaid itself.  I don't see that happening.

The Court convenes at 10 am.  They have 3 opinions to deliver.  I'm guessing this one will be saved for last.  I'll post the vote first as soon as I know it.  Then I'll start reading, summarizing, and analyzing throughout the day.  I'll get you what you need to know asap.  Hang in.  Jennifer

Wednesday, June 27, 2012

Health Reform: The Most Important Civil Rights Victory EVER for the Chronically Ill

Advocacy for Patients with Chronic Illness always was conceived of as a civil rights organization.  Because people with invisible disabilities face unique challenges that are not fully addressed by the disability rights community -- employers, schools, friends, family questioning whether we're really all that sick if we look okay; the crippling effects of chronic illness fatigue; pain, pain, and more pain. Because under the Americans with Disabilities Act, if you can't perform the essential functions of your job -- which means if you can't make it to work reliably every day, which is our biggest problem -- you can be fired, even if the reasons you can't perform those essential functions meets the law's definition of "disability." 

Because people with pre-existing conditions cannot get health insurance.

The Affordable Care Act changed that.  As such, it is the most important civil rights victory EVER to accrue to people with chronic illnesses.  On January 1, 2014, all of us, for the first time, will be able to buy insurance.  And we can't be charged more because we're sick.  Period.  For insurance purposes, our chronic illnesses will become irrelevant.

That makes tomorrow's Supreme Court decision either our Brown v. Board of Education, our Roe v. Wade -- the decision that ensures that we have the same rights as every other American to buy health insurance that guarantees our access to health care -- or our Dredd Scott -- the decision that consigns us to second-class status for generations to come.

So when you come to this blog or email me or call me to talk about the Court's decision, don't expect unbiased objectivity.  Losing coverage of pre-existing conditions is, for me, being told I am not worthy, I am not equal, I never will be.  It would be disrespectful, an indignity, an insult of the highest proportions.  I will be crushed.

But if the Court preserves coverage of pre-existing conditions, I will be joyous!  My equality will have been affirmed by the Supreme Court of the United States.  The likelihood of anybody -- Democrat or Republican -- taking away coverage of pre-existing conditions after tomorrow will be slim, and would be met with a huge outcry by the American people, half of whom have at least one pre-existing condition.  It would not be politically feasible.  If we win tomorrow, we are there.

This is what is at stake in tomorrow's decision.  Frankly, I couldn't care less that, in order to achieve equality, some people who don't want insurance will have to buy it.  They would be exempt from the mandate if they couldn't afford insurance, and there would be subsidies to help them pay for insurance.  It's not a huge burden, especially since most of them, at some point, will actually use that insurance for medical care.  The harm to me, to all of us with chronic illnesses, of depriving us of equal access to health insurance and, thus, health care is far greater than the burden the mandate would create.

And so I end this day-before-the-day when I find out whether my rights count in this country with the trepidation that comes from being so close to equality that I can taste it, but knowing that, in 15 hours, it can be stripped away.

This decision is about way more than law, about way more than how we interpret the Constitution.  It is about whether I am as much of a person as you are.  I'm not sure how I can accept any answer other than YES.  Jennifer

From a Mom, on Health Reform

A mom sent this to me and gave me permission to share it here.

What the Affordable Care Act Means to Me

Too Whom It May Concern,

When I held my infant son in my arms 21 years ago, I thought about all the great things life had in store for him.  I wanted to be the best parent I could be so I could launch him into the world where he could live his life to his greatest potential.  My mentality at the time was similar to most peoples:  work hard, follow the rules and you too can have a slice of the American Dream.

It wasn’t long before I realized how naive I was in my thinking.  Through out my son’s childhood he was diagnosed with not only Crohn’s disease with colitis and gastric paresis, but also with a degenerative disease called Primary Sclerosing Cholangitis.  He can expect to undergo a liver transplant within the span of ten years. 

I cried with such relief when the Affordable Care Act was passed allowing my son to stay on my husbands insurance until he turned 26 years old.  I had absolutely no idea what we were going to do prior to this.  I certainly couldn’t go out and buy a policy for him because of the preexisting clauses insurance companies imposed. 

Prior to the Affordable Care Act, after my son was diagnosed, I was also stunned to find out that most insurance companies have imposed a $250,000 to $350,000 life time cap on organ transplants.  It sounds like a lot of money, but a liver transplant, including the first year follow-up, cost $519,000 according to the United Network for Organ Sharing.  When this cap has been met, insurance companies do no have to pay any additional cost, including the anti-rejection medication required for the rest of the patients’ life.  Anti rejection medication cost $31,000 annually.  Many insurance companies are also smart in that as your liver begins to fail, and you become sicker and sicker, and you are in the hospital for all kinds problems associated with dying, they apply that cost towards your organ transplant cap.  You can reach your monetary limit before you even get a transplant.  I also learned that most insurance companies don’t provide any benefits for treatment relating to a transplant until you have been covered under an insurance plan for 12 consecutive months.  People die waiting to get treatment.  Again, ask my about my tears of relief when I found out that the Affordable Care Act addressed both of these issues.

Because our entire health care system is about making a profit for shareholders, there isn’t much in the way of research for people who have rare diseases like my son.  It’s too bad he doesn’t have something like Diabetes.  There isn’t even a lot of lobbying power because, on a whole, not as many people need organ transplants than.  In short, nobody is in D.C. taking up his cause and research isn’t being done to make his life better.  Ask me about the hope I felt when Affordable Care Act was passed.  Hope for a mother who is powerless on so many levels. 

It is a sad day in America when a mother spends more time worrying about how their son’s liver transplant will be paid for, and its implication for his future, than addressing the insurmountable grief she naturally feels in dealing with his diagnosis. 

So many people got on the band wagon about our government and death panels.  Don’t they see that we already have them?  Wall Street not only dictates to my son his slice of the American pie, but they can also hold the power in deciding if he lives or dies.
All I want is to able to buy a damn insurance policy for my son when he ages out of insurance plan, where life time caps are eliminated, so he can go on to be the best that he can be with what he has. 

And, oh by the way, when you stand out there with your rally signs bellowing out the importance of abolishing Obama Care, think about what that must feel like for mothers like me.  Many of us are distraught and we feel our children are being persecuted.  Life is hard for our kids as it is.  Please, for the love of God, implement some sensitivity.     

Thank you for listening,

News? What News?

It's all about the Supreme Court for me.  But let's see if there's anything else going on that warrants a closer look.

Okay, well, this is about the health reform case.  But this is the coolest thing I've seen.  It allows you to see how a ruling to uphold the law, strike down the law, or strike down the mandate only would affect you in particular.  You want to see what the law already means to people like you?  Click on the tab that says "the law is struck down."  I think what scares me most about this case is that it took a century -- literally -- to pass reform.  If it's struck down, it may take another century --  certainly another generation.  This is our moment.  Will nine people with insurance paid for by the federal government really understand what's at stake?  On the other hand, will the Justices' health issues influence their decision?  I've been wondering about Justice Sotomayor, who has diabetes.  Do you think she's sharing with her colleagues what it's like to live with chronic illness? 

Both presidential campaigns are all over the health reform ruling even before it's announced.   Romney -- who signed health reform with an individual mandate into law in Massachusetts before he (and the rest of the GOP) decided that the mandate, which is a Republican idea born at Republican think-tanks, is a horrible thing -- says he's the guy to lead us out of the mess caused by health reform.  President Obama says health reform was the right thing to do, and whatever the Court says, we need to keep moving forward, not backwards.  Expect to hear these themes over and over again through November.

For three years, we were told that the GOP wanted to "repeal and replace" the health reform law.  It turns out, though, that they're not in a hurry to replace it if the law goes down.  Your kids to age 26 on your policy?  That could go down.  Lifetime limits could be reinstated.  External appeals could go away -- meaning those of you in self-funded plans no longer would have a right to an independent review of your plan's coverage denials.  And on an on.  Not to mention premium hikes remain unchecked, the medical loss ratio, including rebates, would be gone.  Premiums skyrocket.  Millions more people become uninsured.  And the GOP sits on its hands? 

The health care industry is on edge.  Will this decision create chaos?  Will Congress and/or state legislatures pick up the slack

The Treasury Department has released proposed regulations that would require non-profit hospitals to give low income patients a four month breathing period to apply for financial aid before their bill is sent to collections.  This is AWESOME -- and yet another benefit of health reform.

What you eat may make more of a difference than how much you eat when you're trying to lose weight and keep it off.  A low carbohydrate diet helps you burn more calories than a low fat diet, for example.  This was a small study and not definitive, but it's good to know.

What's the role of pharmacists in health care?  Pharmacies would like to expand the role of pharmacists.  For those of us on complex medication regimens, I think this is a great idea.  I have a wonderful pharmacies, Elie.  He's gotten me through some very tough times, and he's always looking out for me.  When my tooth abscessed and I had to go through two rounds of flagyl, he checked in with me and made sure we had a really good reason for the second round -- he was concerned about c difficile, which often comes from antibiotics.  That's just one example of the concern he's showed towards me over the years.  He's definitely one of my health care providers.

One in three Americans can't afford dental care.  We often forget the importance of oral health, and it's not something most of us are prepared to go into debt for.  But if you're like me, putting off the dentist usually means things get a lot worse before they get better.  Still, it's expensive and since most of us don't have dental insurance, we're paying out of our pockets.  Tough one. 

And there you go.  Have a great day -- and stay tuned here tomorrow morning for news and analysis.  Jennifer

One. More. Day. Analysis and Predictions

Finally, tomorrow, we will have a Supreme Court decision on health reform -- assuming, of course, that the Court doesn't order more briefing or argument, carrying over the case to the next Term.  Highly unlikely -- there's already been a historic amount of briefing and argument on this case.  So I think we can count on a decision tomorrow.

What will it be?  Remember, there are four issues. 

First, is this lawsuit barred by the Anti-Injunction Act?  If it's a "tax" under the definition of "tax" in the Anti-Injunction Act, then it can't be enjoined until it takes effect -- 2015.  Nobody thinks the Justice are going to throw out the case on that ground.

Second, the individual mandate.  Can Congress make us buy something even if we don't want it?  Precedent says that Congress can regulate anything that has an effect on commerce -- even an indirect effect.  Growing pot in your backyard for personal use can be regulated by the federal government; growing wheat on your farm for personal use can be regulated by the federal government.  So why can't Congress regulate how you pay for health care -- especially when, if you don't have insurance and you get sick or injured and can't afford to pay your hospital bills, the taxpayers pick up the tab?  More importantly, from my standpoint, is this:  If Congress decides that, in order to require coverage of people with pre-existing conditions, there has to be an individual mandate to bring healthy people into the pool, why isn't that a "necessary and proper" exercise of Congress's powers?  I don't know what the Court is going to do here, but this is the lynchpin of the case.

Third, if the individual mandate is unconstitutional, how much of the law should be struck down?  The states argue the whole law should go.  I don't see that happening.  It's a huge law with a lot of provisions that do not depend on the individual mandate.  But the Obama Administration (unwisely, in my opinion) told the Court that if it strikes down the individual mandate, it should also strike coverage of pre-existing conditions and a prohibition on the use of health status to set premium prices.  I'm hoping the Court takes an all or nothing approach; rather than getting into the details of the law -- all 2700 pages of it -- the Court could strike down just the mandate and let Congress decide what, if any, other parts should be struck down.  As long as President Obama is in office, he would veto any GOP attempt to strike down the whole law, and with Congress becoming essentially paralyzed, it's unlikely they will be able to do much of anything.  So we might keep coverage of pre-existing conditions even if the mandate is struck down.

Finally, the Medicaid expansion, which is paid for by federal dollars for the first few years, and ultimately, the most the states will pay is 10%.  The states are screaming now about that 10%.  But this is an area where Congress has always had all the power it wants to exercise.  To strike down the Medicaid expansion, the Court would have to take aim at Medicaid itself.  I don't see that happening.

Prediction?  Chief Justice Roberts writes for a plurality, meaning there's no majority opinion on all the issues.  Nobody favors applying the Anti-Injunction Act.  Five votes (Roberts, Kennedy, Scalia, Alito, Thomas) to strike down the individual mandate.  A different set of six votes (Roberts, Kennedy, Ginsburg, Breyer, Sotomayor, Kagan) vote that the mandate is severable from the rest of the law (there's a little hope in this prediction since my main focus is coverage of pre-existing conditions).  Those same six votes to uphold the Medicaid expansion. 

There's a lot of hope in those predictions.  I will consider it a win if we keep coverage of pre-existing conditions.  For now, though, we just have to wait.  And wonder. 

You can count on this blog for an immediate report of the votes and analysis throughout the day, as it all gets parsed and we figure out what it means.  So tune in right here for the latest.  Jennifer

Tuesday, June 26, 2012

Tuesday -- Counting Down

So now we know we're going to get the health reform decision on Thursday.  And I'm now laying odds on Chief Justice Roberts writing for the majority.  The only thing that's good about that is I'm also guessing he won't vote to overturn the whole law.  He's certainly concerned about the legacy of the Roberts Court and he knows that what happens with this case will be historic, no matter how it comes out.  Does the fact that he joined the majority in the Arizona immigration case, which deferred to federal powers, indicate that he may be deferential to an Act of Congress?  (I don't think so.)  Or will his conservative bent take the lead?  If so -- if he votes to strike down the individual mandate -- will the Court also strike down coverage of pre-existing conditions and the prohibition against using health status to calculate premium prices?  And, of course, that's the whole ball game for me -- I'm all about coverage of pre-existing conditions.  Let's see what the conventional wisdom is this morning.

Here's an interesting recap of the oral argument.  It was a lively bench, with the Justices speaking 43% of the time, with laughter increasing as the arguments wore on.  I remember thinking Justice Scalia's joking was a bit much, and I clearly recall Chief Justice Roberts saying "that's enough frivolity."  It was, indeed, more than enough, in my view.  And here's an interesting road-map to the decision, whatever it is.  Wondering what's taking so long?  Here's an insider's view on the last days before a big decision is announced.

No question the law has already benefited many Americans.  It's helped seniors pay for prescription drugs.  And without the law, the status quo of rising premiums, higher deductible plans, greater out of pocket costs would continue to make health care a privilege of wealth rather than a right to which we all are entitled.  And still, there are those telling deliberate, blatant lies about the law.  It's an outrage that public figures would knowingly, intentionally mislead the American public.  Scary, if you ask me.

In other news, proton pump inhibitors -- medication for gastro-esophageal reflux disease or GERD (otherwise known as heartburn) -- have serious side-effects, including anemia and poor absorption of some nutrients.  This is pretty big -- so many people (including me) are on these meds for life.  Can't live with them, can't live without them?

The rise of the walk-in clinic.  Progress?  My first thought is how would you get your medical records if you went to different clinics all the time.  Clearly, this is meant for a cold, not a chronic illness, where continuity of care matters.  What about do it yourself medical testing?  Can you interpret the results properly?

The US Preventive Services Task Force is urging doctors to do more to compel obese patients to recognize their problem and work towards a solution.  They should tell patients what diets work and encourage 12 - 26 week programs that help you get on a better track.

That's it for now.  Have a great day.  Jennifer

Monday, June 25, 2012

No Health Reform Decsion Today

The Court struck down part of the Arizona immigration law, upheld the provision that permits police to check immigration status before releasing someone from detention.  This was a win for the Obama Administration -- does this bode poorly for health reform?  Justice Kennedy wrote the opinion, which Chief Justice Roberts joined.  Does this mean CJ Roberts wrote the health reform decision?  I'm guessing yes and yes are the answers to those questions.

The Court will release more decisions on Thursday.  So that's going to be the day.  Jennifer

Is Today the Day?

Huffington Post's headline blares MONDAY!!!  For those of us who live and breathe health reform, nothing more needs to be said.  Sure, there are stories under that headline -- the best kept secret; striking down the law would undermine the Court's legitimacy; the stakes are high for "real" people -- especially those with pre-existing conditions; the White House is bracing for bad news; but the law could be upheld.  And on and on.  I hope it comes today, if only to put us out of our miseryEddie Vedder chimed in with Tom Petty on the "Waiting Is the Hardest Part" at the Isle of Wight festival this week-end, and they couldn't have chosen a better time for that song.  We've waited long enough to know whether people with pre-existing conditions will be treated equally by insurance companies or not.  I'm ready to know -- can we celebrate, or is it time to start over again, this war we've been waging on discrimination that the courts say is legal, but that leaves our health and well-being at risk?  They can uphold the law, strike down the law, strike down just the individual mandate, or strike down the individual mandate, coverage of people with pre-existing conditions, and permitting premiums to be based on health status.  50-50 odds of losing coverage for people like us.  If part of the law is struck down, the White House will press ahead with the rest, while the GOP votes to repeal whatever's leftIf they strike down only the mandate, can the rest of the law move forward?  Yes, I say.  Yes, it can. 

Opponents of the law say those of us who supported it didn't take the legal challenge seriously enough.  What we didn't take seriously enough was the willingness of the conservatives on the Court to sell out, reversing years of precedent to help spread their political viewpoint -- corporations buying elections under Citizens United, including the next Presidential election -- a trend that really started with Bush v. Gore.  We used to think the Court had principles -- or at least that they'd want it to look like they do.  Well, when this decision comes down, we will know for sure.  Because there is no principled way to strike down this law. To strike down the Medicaid expansion, you pretty much have to strike down Medicaid.  To strike down the whole law based on the individual mandate, you have to overturn a century of precedent that tells the Court to preserve as much of an Act of Congress as it can. 

But extending health insurance to those who can't afford it is built on principles of community and compassion.  An experiment in Oregon -- giving health coverage to the uninsured by lottery and then studying the effects on their lives -- shows that access to health care makes people happier and more financially stable, as well as healthier.  Opponents of reform have chosen to ignore the plight of the uninsured, instead telling lies about death panels that never existed, a government take-over of insurance that never happened, ignoring all the good that already has been done, the good that would be done were the law allowed to take full effect.  For a century, people have aimed for universal health care in America.  Will the monied interests once again prevail over all that is right and good?  That, for me, is what is at stake.

And I'm tired -- tired of waiting, tired of defending a law against complete and utter lies, tired of trying to spin whatever goes wrong, tired of trying to figure out what to say to the people who call, day in, day out, asking what they can do if they have no health insurance and no money.   Tired of living the effects of injustice every single day.  If you haven't sat in my chair, you don't see the big picture, the harm that the system has done and is doing.  Some days, it's too much for me to bear.  Millions of Americans suffering. Children suffering.  People who work hard but can't afford health insurance or health care -- get sicker, lose jobs, and then the same people who oppose health reform chastise them for living on welfare or disability.  They live with blinders on, these opponents of health reform.  They live in a world that is sanitized of  the pain I see and feel every day.  They live in a fairy tale world.  Nobody could see what I see and be against health reform -- against covering people with pre-existing conditions, against expanding Medicaid to cover the poorest of the poor.  Nobody could see what I see and not be willing to bleed for change. 

What will I say to the people who need help if the law is struck down?

While nothing is as important as that to me and others with chronic illnesses, there is a little additional news.

It looks like Pfizer wasn't completely straightforward about Celebrex and its ability to protect the stomach while treating pain, unlike other arthritis meds.  What a disappointment, to think that such a large drug company would tell half-truths when it comes to something so important.  I know -- you'll say I shouldn't be surprised, won't you?  I guess I'm naive in thinking the regulatory process would deter such behavior since it was bound to become public eventually. 

Health apps are multiplying in droves -- and are unregulated, causing consternation at the FDA.  How do you know which ones to rely on? 

When a non-sectarian hospital merges with a Catholic hospital, women lose health care.  Waterbury Hospital is merging with St. Mary's, but that means Waterbury Hospital has to take on the Catholic directives -- not just eliminating abortion, but eliminating counseling about contraceptives.  Eliminate tubal ligations during c-sections. 

That's it for this morning.  Check back here for updates.  We'll have the health reform decision immediately, and analysis as quickly as possible.  Meanwhile, let's hope we have something to celebrate.  Jennifer

Friday, June 22, 2012


I don't know about you, but this has been a really long week for me and I'm exhausted.  It seems like every day is longer than the one before.  I'm looking forward to some down time this week-end.  But first, the news:

Anticipating the Supreme Court's decision continues to be the media's sport of the momentNobody has more to lose than people with pre-existing conditions.  I can't bear the thought of losing coverage of people with pre-existing conditions, ending the legal discrimination against us.  But health reform isn't just about health insurance, although that's a big part of it.  But there has been a lot of funding of community health centers and consumer assistance units, innovation grants, and many other programs.  Nobody knows what will happen to those programs if the law is struck down.  Here's the great Don Berwick's take on health reform -- you may recall that he ran the Centers for Medicare and Medicaid services, responsible for implementing much of the law, until he had to leave because the GOP wouldn't confirm him and his recess appointment expired.  One of the greatest minds we have on how to reform health care in America.  David Lazarus argues that striking down part of the law -- the most likely scenario -- would throw the system into chaos and make it even more dysfunctionalRandy Barnett -- one of the architects of the legal challenge to health reform -- continues to misrepresent the legal arguments, offset (thankfully) by Families USA's Ron Pollack, who believes the law can survive even without the mandate.  Meanwhile, the GOP is getting ready to celebrate -- although Speaker Boehner advises against "spiking the ball."

If you want to know what happens without reform, look at Texas, where there are millions of uninsureds, there have been deep cuts to social programs, and ER waits are as long as 24 hours.  The worst calls we get are from Texas.  There simply are no resources.  People are suffering terribly.  Are we going to allow the same thing to happen nationwide by not dealing with the problems in the system that sparked health reform?  I hope not. 

Can doctors learn empathy?  That's the question Dr. Pauline Chen is trying to answer today.  She says the answer's yes -- but my question is do they want to?  Of course, some are fabulous -- but the ones who aren't empathetic probably don't see a need for change.

Finally, a warm welcome to Kevin Counihan, who is the new CEO of Connecticut's Health Insurance Exchange.  He spent several years implementing Massachusetts reform, and then worked for a California company that helps states implement exchanges.  I was fortunate to have a chance to meet him the other day and I was very impressed with his commitment and determination to do what's best for consumers.

And that's it for this morning.  Have a great day and a great week-end!  Jennifer

Thursday, June 21, 2012

The Waiting is the Hardest Part

The lead headline in Huffington Post today:  LOOMING!  With a picture of the Supremes, you don't have to read the article to know what they're referring to.  It may be today, but more likely next Monday or even next Thursday.  But soon the waiting will be over -- and then, the work of trying to understand the implications of whatever the Court does will begin.  And then we will have to clean up the mess they make and see if we still have meaningful health reform.

The anti-reformers surely are doing their best to turn people against the law.  About $235 million in advertising has been spent by opponents of the law.  All of the good news has been drowned out -- the 3 million college kids who are now insured, the savings for seniors through the Medicare drug plan, external appeals that have helped us win cases we never otherwise would have won.  Indeed, this year, insurers will pay $1.1 billion in rebates because of the law's medical loss ratio requirement (percentage of premium dollars spent on health care as opposed to administrative costs).   130,000 people died between 2005 and 2010 due to a lack of health insurance. This law aims to change that. All people know is that they think they're going to have to buy something they can't afford.  They don't know about subsidies.  They don't know that the mandate is waived if insurance is unaffordable; indeed, the mandate would apply to only about 2 percent of people.  But 77 percent of people want health reform -- they just don't like this particular law.  I'm thoroughly convinced that it's largely because they believe the lies.  For example, not only is health reform not a job killer, but the health care sector is growing in leaps and bounds.  Most pundits now say, though, that no matter what the Supreme Court does, the battle for universal and affordable health care will go on

Here's a helpful -- and accurate -- guide to the law's effect on consumers.  That's the link to send to your friends and colleagues who don't understand all the good the law has done and will do if it is allowed to move forward.

The HIV infection rate has nearly doubled for African-American women in DC.   What an intimidating statistic.  Just shows that HIV is still an epidemic and we can't abandon vigilance.

Heart attack victims are more likely to have PTSD, which then increases the risk of another heart attack.  Interesting. 

And here's the next installment from the cancer patient who's blogging her experience having a bone marrow transplant.  I particularly like this post.  She talks about how it's strange to "battle" something that's inside of you -- you vs. you.  I often think of my illnesses as a dragon that lives inside me, which makes it tricky to kill it since you might kill part of yourself in the process. 

That's it for this morning.  If the Court rules, we'll hear just after 10 am.  I'll have analysis as quickly as possible.  Have a great day!  Jennifer

Wednesday, June 20, 2012

A Crohn's Patient's Open Letter to US Airways

 *** UPDATE***

US Airways called -- Christy.  She said she was calling in response to my open letter to US Airways.  She said they never received my letter to the CEO (I have fax confirmations and I confirmed the fax number by phone before I sent it).  She again tried to distinguish between assistive devices, which we would be allowed to carry on board, and things like clothing and personal hygiene items, which she thinks they don't have to let us take on board despite fecal incontinence.  She claimed that the gate agents asked the flight crew if there was room for my bag; in fact, a gate agent specifically asked another gate agent whether she should check to see if there was room and he said no.  She can't tell me whether the nasty flight attendant was spoken to because that would violate the flight attendant's privacy rights (even though I don't know the flight attendant's name).  She said I should have pre-boarded -- so again, it was all my fault.  She said she would follow up with a letter.  I told her that unless she was prepared to apologize and tell me what steps they have taken to make sure this never happens again, she didn't need to send me a letter since her phone call was making things worse rather than better.  Now, I just need time to file a TSA complaint.  J


 I am posting this because I still have not received any response whatsoever.  Jennifer


W. Douglas Parker
Chief Executive Officer
J. Scott Kirby
US Airways Group, Inc.
111 W. Rio Salado Pkwy
Tempe, AZ  85281

Dear Mssrs. Parker and Kirby:

          I am writing regarding the offensive, harmful and illegal conduct to which I was subjected on a recent US Airways flight.  I previously wrote to your Customer Relations Department and received a telephone call from a woman named Cynthia, who insulted and offended me even more, providing not even a hint of sympathy for all I have been put through, stating facts that are patently false, and lecturing me on what I should have done differently, even if that required me to expose even more of the details of my private medical information in a public setting.  Thus, I am left with no alternative but to contact you directly.

On May 20, 2012, I had the great misfortune of traveling from LAX to Philadelphia on US Airways Flight 796, with my ultimate destination in Hartford, Connecticut.  I was in boarding group 5.[1]  Because the flight was full, we were told long after most passengers had boarded that everyone in group 5 had to check their bags.  I very clearly stated that I am very ill, that I have a disability under the Americans with Disabilities Act[2], and that I could not check my bag.  I had only one small roller board[3], but I was told I could not take my bag on the plane with me.   I tried to explain that I had too much medicine (fifteen prescription medications) with me and I really needed my bag. I implored the staff to please try to find some solution that would allow me to keep my bag with me.  Instead, US Airways staff gave me a flimsy plastic bag and instructed me to unpack my medicine from my suitcase and put it in the plastic bag.  What I could not, at least at first, bring myself to explain in public is that, due to my refractory Crohn's disease, I suffer from fecal incontinence and must travel with a change of clothes and personal cleanings items.  In addition, one symptom of my Crohn's disease is very bad joint pain.  So I ended up with my purse and a US Airways plastic bag to carry around when I made my connection instead of a bag on wheels that would have been less painful.  As a result of the confiscation of my suitcase with my clothing and supplies in it, I traveled all the way from Los Angeles to Hartford with nothing to eat or drink in an effort to ensure that I would not have to move my bowels.  By the time I reached Hartford, I was so dizzy and light-headed that I had to ask for a wheelchair to take me to baggage claim, where I had to wait one-half hour for my bag and then get myself home in an extremely weakened state.

And after all of that, there was an overhead bin just behind my seat that was completely, totally empty.

When I got on the flight, I wrote a three page letter in handwriting and handed it with a copy of my business card to a flight attendant addressed to the pilot or senior flight attendant. It was completely ignored, at least until later.  During beverage service, I attempted to speak about this with the flight attendant, who accused me of being disruptive and said "do you want us to land this plane for you so everybody has to miss their connections?"  Clearly, I was requesting no such thing.  I repeatedly said that I have a disability under the Americans with Disabilities Act, and instead of affording me some dignity and respect, the flight attendant reported me to the senior flight attendant.  Apparently, asserting one's rights under the Americans with Disabilities Act is seen by US Airways as a behavior problem rather than a lawful request for accommodations.

I did explain the whole tale again to the senior flight attendant, who was the first person to show me any compassion.  She listened kindly, took my baggage claim ticket from me, and said that she would check during the flight to see if there was anything she could do to allow me to retrieve my bag in Philadelphia rather than make me wait to get it back in Hartford, separating me from my medically necessary supplies for a full 12 hours.  Approximately an hour later, she returned and said that a representative of the airline would meet me in Philadelphia. No access to my bag, but another person to whom I would have to disclose my private medical information.  Indeed, I was afraid to speak to anybody else; after being reported for being disruptive for doing nothing more than seeking accommodations to which I am legally entitled, I was now afraid to speak up for fear that I would not be allowed to board my plane from Philadelphia to Hartford.  In the end, there was no representative, but the senior flight attendant had finally read my letter and arranged for me to get driven to my connecting gate, for which I was grateful.

The awful embarrassment of having to discuss these intimate aspects of my health across two other passengers was compounded by the fact that the passenger next to me, who identified himself as a doctor despite his very young appearance, was incredibly cruel, chastised me for bothering the flight attendant, and then admonishing me not to speak to him again for the remainder of the flight, and telling me that if I am so sick, I should not travel.  Is everybody so cruel as to criticize a person with a disability who has done nothing more than to assert her rights under the law?  I only had to endure this because US Airways personnel would not listen to me at all when I tried to speak with them more quietly and privately before I got on the plane.

I have been sick for 36 years.  I have never been treated worse than I was on this flight.  Indeed, as I wrote this first during the flight, I was crying uncontrollably.  I did nothing wrong, but was treated like I was a criminal or just plain crazy.  Much to the contrary, I am a nationally renowned expert in chronic illness law.  I have participated in conference calls with the TSA about how important it is to accommodate passengers with disabilities, only to have this happen to myself -- an experience so humiliating as to leave me sitting on the plane in tears, wishing there was some way I could disappear.  My status as a leader in the disabilities rights community went out the window, leaving me the victim of illegal and cruel taunting and embarrassment.

As I am sure you know, the law protects people with disabilities and requires that we be accommodated.  Under the ADA and the Air Carrier Access Act, a disability is a substantial impairment of a major life activity.  Major life activities include bowel and digestive functions.  42 USC 12101, et seq.  I am substantially impaired in these major life activities and, thus, I am entitled to reasonable accommodations.  As soon as I identified myself as a person with a disability under the ADA, some solution that did not involve separating me from my medically necessary possessions should have been sought.  A healthy person could have been asked to check their bag instead of me. At the very least, US Airways staff could have spoken to me kindly and with respect.  And since it turned out than an entire overhead bin was left empty, I could have been allowed to keep my bag with me without inconveniencing anybody. Instead, what was a truly wonderful trip in which I was repeatedly and publicly recognized for my accomplishments as a role model for people with chronic illnesses --a great accomplishment for me -- ended with me in tears, humiliated, ostracized, scolded, reported as a behavior problem, terrified of having an episode of fecal incontinence on an airplane -- my worst nightmare.

Of course, there is no way to undo the damage that has been done to me.  However, if not for myself, then for the millions of people with invisible disabilities who fly every year, I felt compelled to pursue this as what President Obama might refer to as a "teachable moment." Your ground and flight staff were nothing short of cruel. I had to disclose the details of my illness -- fecal incontinence -- in public in order to try to secure my rights. Indeed, the only reason the senior flight attendant ever became aware of my ordeal was that a horrible, abusive flight attendant reported me to her – not as someone who needed help, but as someone who was disrupting beverage service.  And in the end, not only was there plenty of room for my bag on the flight, but I suffered one of the worst indignities I have ever suffered in the 36 years since my diagnosis.  I will not and cannot rest until I am comfortable that all of the US Airways staff with whom I came I contact are educated properly so as to ensure that they never inflict upon another person the indignity that they inflicted upon me today.

I cannot have been put through this humiliating ordeal for no reason.  The only way to make something come of this horrendous experience is to ensure that it will never happen to me or anybody else with an invisible disability ever again.  Thus, I wrote to your Customer Relations Department on May 22, 2012.  I received a telephone call from Cynthia, who said that US Airways is not required to allow me to bring my one carry-on bag onto the plane, and that I had been told that they track room for bags by computer so they know when the plane is full.  This is COMPLETELY FALSE – nobody ever told me that, and there was an entire overhead bin that was empty.  She told me that it was my fault for not taking my clothes and hygiene items out of my bag – in front of all the other passengers – and explaining my problem with fecal incontinence more publicly.  My fault?  It became apparent to me that she had not really read my letter, and that she had no interest in retaining me as a customer.  Thus, you are my last resort before taking action.

Please understand this:  I do this for a living.  I have written to airlines before on behalf of other passengers with disabilities.  We have always gotten apologetic, kind responses.  One man with my illness now has a right to use the first-class restrooms on Continental flights after he was prevented from doing so and we complained on his behalf.  We received a similarly satisfying response from Delta on behalf of another client.  Do not think for one moment that I am going to accept anything less than a satisfying response from US Airways when the passenger happens to be me.  Not only will I file a complaint with the TSA, but I will use all of my communications skills to ensure that the disability rights community knows that US Airways does not care about people with invisible disabilities. 

All I wanted was some recognition that the ground and flight crews were not adequately sympathetic with my plight.  I would have been entirely satisfied with a warm, genuine apology and perhaps some direction on how to handle a similar situation in the future.  What I got instead – so far – was a snide, unfeeling woman who could not have cared less what I had gone through.  Indeed, it is four days later and I am still sick and terribly upset.  Your customer service person made things significantly worse, not better.  Frankly, I am shocked that you would respond to a customer in such an offensive way.

Thus, I am giving US Airways one more chance to make this right.  I don’t want money or a free ticket or anything like that.  I just want an acknowledgement that I was treated badly, that US Airways is sorry, and that it won’t happen again.  Anything short of that is unacceptable.

Thank you.


                                                   Jennifer C. Jaff*

[1] I do not understand why I was in boarding group 5.  I had a window seat, so everybody in my row had boarded before me.  I bought my tickets months before the flight.  I was in the rear of the plane, which we were told would board first (which makes sense).  Had I not been put in group 5, none of what followed would have occurred.  However, it seems to me that all of your passengers have a right to bring one carry-on item with them on the flight.  If you had policed the people who got on the plane before me a bit better, making them check a bag when they had 3 carry-on items, and directing them to place small items like backpacks under their seats, none of this would have happened to me.

[2] I understand that US Airways is bound by the Air Carriers Access Act.  However, the definition of “disability” is the same under both Acts.

[3] I saw many passengers board with a roller board, a small bag, and a handbag.  None of them was stopped from boarding with three carry on items rather than two.  I, instead, had only a handbag and a roller board.