Lifetime caps

National Healthcare Reform: The Aftermath

On Tuesday, March 22, President Obama signed into law H.R. 3590, The Patient Protection and Affordable Care Act, representing the biggest change to the US healthcare system since Medicaid was introduced in 1965. But it’s not over yet. Many are unhappy with the final bill, and vow to protest it. The mood has turned ugly in many parts of America, as some think the bill will create a crushing financial burden on our future, and our children’s future, or was arm-twisted through the Senate and lacks any kind of bipartisanship, or even some think brings us ever closer to socialism. The victors are proud of their achievement, that despite the opposition, the bill was passed and a new era of healthcare begins.

For those of us with hemophilia or VWD, the bill provides the changes we have been advocating for years:

• Eliminates lifetime caps in new and existing health insurance plans six months after enactment of the bill
• Eliminates rescissions in all health insurance plans 6 months after enactment
• Extends coverage for dependents, to stay on a parent or guardian’s insurance plan until age 26, six months after enactment
• Restricts annual caps in new plans before 2014, and then eliminate them in all new plans and existing group plans in 2014.
• Eliminates pre-existing conditions exclusions for children in new plans 6 months after enactment, and for all people in all plans in 2014

If the bill is not challenged or changed, our children will not face discrimination due to their disorder. They will be able to be insured.

There are serious attempts to change the bill. So we will all need to read and watch to see whether those attempts are successful in changing the bill as it stands. Many of the changes, should they stay, will not go into effect immediately; some, not even for years. Continue to read about healthcare insurance issues to know what is changing, what isn’t changing, and how this impacts bleeding disorders and you in particular.

And everyone has a right to be concerned about not just healthcare but our nation’s financial health. Try to read up on the facts about national debt, macroeconomics and how the Act will be funded. It’s extremely complicated, and not done justice with sound bites from TV or radio personalities. Will our children instead face greater out-of-pocket costs now? No one knows for sure how this will all play out. Keep reading, debating and forever watching your insurance policy. Now is not the time to get complacent, even though it seems our dream of better insurance for our children is here.

Interesting Book I Just Read
The Tipping Point by Malcolm Gladwell

Gladwell looks at the phenomenon of how some ideas and products take consumers by storm, while others fade away. Even when small numbers of people start behaving differently, as in accepting fads or new trends, their behavior can ripple outward until a critical mass or “tipping point” is impacted… which can change history. He coins three types of people who help create this ripple effect. He hops from examples as random as Hush Puppies shoes and even the drop in violent crime in New York, and teenage suicide. Gladwell seems to be tying together a theory, but the whole book feels as though it’s trying much too hard to impress, much too hard to prove this theory. It’s not science and it’s not good sociology. In fact, I think Gladwell himself is just trying to create a ripple and hoping it goes viral! This book was on the beset seller list, but I wasn’t so impressed. It’s interesting, worth a read, but it’s kind of sociology-lite. Two stars.

Mr. President, Meet Hemophilia

You know all the intense town meetings with President Obama that have focused on health care reform? One was held in Denver yesterday, and our own Nathan Wilkes introduced President Obama to the attendees and to hemophilia. The New York Times writes:

“At a town-hall-style meeting in a high school gymnasium here on Saturday, Mr. Obama was introduced by Nathan Wilkes, whose family nearly lost their health coverage after costs to care for his 6-year-old son, Thomas, who has severe hemophilia, approached the $1 million lifetime policy cap….In introducing the president, Mr. Wilkes fought back tears as he described the birth of his son in 2003, and the first question the doctor asked: “Do you have good insurance?” Mr. Wilkes told of how he ‘searched frantically’ for a new policy when his son neared the $1 million cap, and how a social worker suggested that he and his wife divorce, so their son might qualify for Medicaid. Eventually they found coverage, with a $6 million cap.”

Nathan and Sonji Wilkes are colleagues and friends: Sonji is a columnist for our newsletter PEN. They are both very active advocates for health insurance reform, and Nathan ran for a political office last year. Their son Thomas has an inhibitor, and Sonji is one of our peer reviewers for our new inhibitor book coming out last this year.

This was the town meeting in which Obama sited his grandmother’s death, and in which the university student Zach Lahn asked how private companies could possibly compete with the government on health care insurance. The NYT writes that Obama replied, “‘The notion that somehow just by having a public option you have the entire private marketplace destroyed, is just not borne out by the facts,’ Mr. Obama said, adding that ‘UPS and FedEx are doing a lot better than the Post Office.'”

Congratulations to Nathan for his select role in introducing the president, and thank you for representing the entire community at such a crucial time.

Great Book I Just Read: The Brief Wondrous Life of Oscar Wao by Junot Diaz
This New York Times best seller and Pulitzer Prize winner traces the story of Oscar, a fantasy, Dungeons and Dragons and sci-fi fan who wants to be a famous author. But we meet his entire Domincian family, three generations of the DeLeons–Oscar’s mother Beli, his sister Lola, his grandmother La Inca, and his friend Yunior– and in exploring their troubled, complex relationship, we also explore the culture and history of the Dominican Republic. Diaz writes explosively, with a hip edginess, directed right at the reader. He weaves into the story the violent history of the DR, its language, its beliefs, its people, its culture, the “Fukú” –the curse– and why Dominican men behave as they do toward their women. And Oscar is so un-Dominican: overweight, can’t dance, no social skills. He longs for a girlfriend, and comes squarely up against a culture of machoism. As someone who has been involved with the DR for 12 years now, I learned a lot more about the island and its people than I already thought I knew. It’s hard to characterize a culture but Diaz has adeptly done it in an entertainingly dark way. Four stars.

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