Thursday's Themes

Yesterday marked the one-year anniversary of health reform. America remains split on the law. I cited to a lot of opinion pieces yesterday, but here's a particularly good one from the LA Times, which does a good job of addressing reality, discounting the myths and explaining what the law does and does not do -- and the fact that the law is NOT responsible for the continued rise of health care premiums. Michelle Obama cites the law's benefits for families and kids. Governor's cited the law's benefits in rural America. And there's no disputing the stories of the harm done by the pre-reform status quo.

Here's an interesting piece on how the law changed the political landscape -- arguably for the worse. The GOP continues to promise to repeal the law, even though most Americans do not want it repealed. The GOP presidential hopefuls were out in force yesterday criticizing the law. John Boehner and Mitch McConnell both released videos criticizing the law, promising to kill it. The GOP presents a unified front in favor of repeal.

Despite all that, the Tea Party is disappointed by the House GOP, and plans a demonstration next week to express that sentiment.

Meanwhile, the GOP has introduced legislation demanding more transparency on how HHS grants waivers from various health reform requirements. I still don't get this. They want states to have flexibility in implementing the law, but when there's flexibility, they cry foul. I'm confused. But Karl Rove's group has now sued to force the Administration to disclose more information. But the law directed the Secretary to grant waivers to avoid market disruption. Just about everyone who has requested a waiver has gotten one, according to Secretary Sebelius. And the government has issued guidance on how to get a waiver. So what additional information do they want?

Understandably, the anniversary of reform dominated the news, but in other news, a new rule requiring Medicare recipients to see a doctor before or after beginning to receive home health care has come under scrutiny.

And that's it for today's news. Have a great day. Jennifer

More on Health Reform's Anniversary

My second essay marking the anniversary of health reform is here. Read and learn. Jennifer

Health Reform Is A Civil Rights Issue

March 23, 2010. I watched on television, tears streaming down my face, as Barack Obama signed the health reform law one letter at a time, to maximize the number of signing pens. The moment was full of emotion for me. Finally, there was recognition that people with pre-existing conditions have become second-class citizens in America when it comes to getting health insurance. Finally, America was reaching a hand out to us, the chronically ill.

For me, health reform is a civil rights issue. Those of us who have suffered the misfortune of getting sick have burdens to bear that healthy people don’t. I have had to choose jobs based on the availability of health insurance. I spend thousands of dollars on deductibles and copays and items not covered by insurance every year. Millions of families have had to file bankruptcy to discharge medical debt. Way too many people are forgoing care because they can’t afford it – even those with health insurance struggle to pay deductibles, copays and coinsurance.

Every day, I talk to people who are horribly ill and who cannot get care because they don’t have insurance and can’t get insurance. A family with two little girls with Crohn’s disease that earns too much to qualify for government-funded care, who, before health reform, could not get insurance due to pre-existing conditions. And even those who have insurance had, before health reform, crippling limits on their coverage. A woman needing a heart transplant called me; her policy had a benefits cap of $200,000. What could she do?

Health reform has changed all that. Lifetime caps on benefits are a thing of the past, and annual caps are being phased out. Pre-existing condition exclusions for children are prohibited; adults follow in 2014. And there’s a new high risk pool for people with pre-existing conditions who can’t get insurance elsewhere. These and other protections that have taken effect during this first year of health reform already have improved access to insurance and, thus, to care.

This is about so much more than dollars and cents. The chronically ill are the invisible victims of the pre-reform status quo. We may not look sick, and so our needs too often are forgotten. We are the equivalent of the homeless sleeping under bridges, out of the way of the public eye, suffering desperately, trying to hold onto the job that provides us with the insurance that is our lifeline. Our doctors resent the amount of time we take. Insurers hunt for excuses to cancel our policies. Our friends and family too often think we are exaggerating because pain is invisible, fatigue is invisible, our illnesses are invisible. We were invisible.

No more. Health reform has begun to change the way we look at chronic illness. With an emphasis on care coordination through mechanisms like patient-centered medical homes, health care is being redesigned to meet our needs. Insurers in every state, and health plans sponsored by every employer, will have independent reviewers evaluating our appeals from noncoverage decisions so those of us with rare diseases will have a fair chance at getting the medication we need even in the absence of large-scale clinical trials.

But most of all, the elimination of pre-existing condition exclusions makes us equal. We will not have to scrounge for whatever coverage we can find. We will have the same options as healthy people. Yes, this comes at a price: the individual mandate. In order to cover people with pre-existing conditions at affordable rates, healthy people have to be in the pool to spread the risk. But just as allowing African-Americans a seat in the front of the bus meant some white people had to sit in the back, so, too, does eliminating pre-existing condition exclusions mean some healthy people will have to change their behavior. America has made that sort of bargain many times in our history in order to give the disempowered a leg up. Is it so wrong to do the same for us, the chronically ill?

On March 23, 2010, President Obama answered that question. We no longer are the second-class citizens of the health care system. When the new law is fully implemented, we will have the same right to purchase health insurance as healthy Americans.

Martin Luther King, Jr. said: “Of all the forms of inequality, injustice in health care is the most shocking and inhumane.” Health reform represents an end to that injustice. And so I celebrate the anniversary of the signing of the health reform law. We have overcome. Jennifer

The Happy Birthday Health Reform Edition

Today's the anniversary of health reform. I'll have more to say about that in a little bit, but first, today's news:

There's a lot of celebrating going on around the one-year anniversary. Despite all of the good that's been done -- the Pre-existing Condition Insurance Plans, covering kids to age 26, eliminating pre-existing conditions for those under age 19, eliminating lifetime caps and phasing out annual caps, helping to close the Medicare Part D doughnut hole, free preventive care -- and all the good that's coming, Americans are still split on the law. It remains controversial and largely misunderstood. But there is no question that health reform has offered a lifeline to many who would not have had help otherwise. Many say they have benefited already from the law. For example, seniors have saved $40 million in doughnut hole spending. Still, Senator John Thune says the law is a failed experiment. (Of course, he's focused on premium prices, and the parts of the law that may help with that haven't been fully implemented yet.) Civil rights leader Wade Henderson says it is necessary to ensure access to health care for racial and ethnic minorities (and I would add those with chronic illnesses or any pre-existing condition). Even the pollsters are split, with Dem pollsters saying the law will catch on, and GOP pollsters opposing.

Meanwhile, here are some tips on how to reform your health care to get more bang for your buck.

And on the budget, talks are proceeding in quiet during a Congressional recess. The GOP hope to release a 2012 budget in a few weeks, but they still have to provide for the rest of this year. They are stuck on issues like defunding health reform and Planned Parenthood -- not exactly deficit-related issues.

In other news, the National Institutes of Health is hosting a meeting on chronic fatigue syndrome, to see if the researchers can identify a cause.

And that's it for now on the news. But don't go anywhere -- I'll be back in a minute. Jennifer

Next White House Disability Call

The next White House call on disability policy will take place at 5 pm on Thursday March 31. The call-in number is 800-230-1059. There is no participant code; just say you're there for the White House disability call.

We are encouraged to disseminate this info widely, so invite your friends. Jennifer

What Health Reform Means to Me

Health Reform Victories

Marilyn called us from Iowa. Her ex-husband was laid off from his job. Although he could have continued his daughter’s health insurance under COBRA, he failed to do so, leaving the girls without coverage.

Both of Marilyn’s daughters have inflammatory bowel disease. Her minimal income disqualified them from Medicaid or CHIP, leaving the girls without any health insurance. Marilyn works, but her plan would not cover the girls because of their pre-existing conditions.

I explained, though, that under the Affordable Care Act, children under age 19 cannot be turned down for insurance due to pre-existing conditions. Marilyn was thrilled; you’d have thought she’d won the lottery!

Marilyn went to her employer with her newfound knowledge and both girls were enrolled in her employer’s plan as Marilyn’s dependents, with coverage of their pre-existing conditions from day one.

And in another case ....

Doris called from Missouri. She has a fourteen year old son with ulcerative colitis and she could not find him insurance anywhere due to his pre-existing condition.

Lucky for Doris, she called me in August 2010. On September 23, 2010, the Affordable Care Act’s consumer protections would kick in, I explained. That meant that she would be able to find her son insurance because insurers no longer could refuse to cover children under age 19 with pre-existing conditions.

Due to the Affordable Care Act, Doris’s son is insured.

Real lives. Real people. Real difference. Jennifer