Affordable Care Act

Supreme Court Upholds ACA

Laurie Kelley July 2, 2012
It’s fair to say we’ve all been holding our breath to see what the Supreme Court would rule this past week on the Affordable Care Act, often referred to as “Obamacare.” The ruling will have a long-term effect on the bleeding disorder community. Indeed, I’ve been to Hawaii, North Carolina and Tennessee as part of our insurance symposia Pulse on the Road to ask families and patients to pay careful attention to their healthcare policies, and to what’s happening in Washington DC. Would lifetime caps be reinstalled? Would pre-existing conditions be allowed again? Our children with hemophilia would face terrible battles for healthcare access if these provisions were reinstalled.
But in a 5-4 vote, the US Supreme Court ruled to uphold most of the health care law. One central controversy was over mandatory insurance; many Americans saw this as unconstitutional and a threat to our freedom to choose our own protection and access to care. Chief Justice John Roberts gave an opinion, which upheld the constitutionality of the individual mandate because it is a tax. The Medicaid expansion has been limited.

We’re lucky to have such a vigilant community that jumped at the news and shared right away; our vigilance was earned the hard way, through massive loss of life. From the Hemophilia Federation of America:  “HFA is reviewing the ruling and will closely monitor its impact and are committed to ensuring adequate access to care for all people with bleeding disorders,” said Kimberly Haugstad, Executive Director of HFA. “We will continue our advocacy to protect beneficial provisions of the ACA, so that the overall health care system is improved.  We encourage everyone in the community to join us.”

ACA was made into law March 2010, in the hopes of reforming our convoluted and expensive healthcare system, to try to lower costs and to keep all Americans insured. About 45 million Americans (out of an estimated 300 million) do not have insurance. In fact one young man, age 27, called me two weeks ago with a severe bleed, telling me he didn’t have insurance! He wanted me to send factor that I normally give to patients in developing countries! His only resort would be to go to the ER, get factor, incur massive bills and pay the rest of his life, even just $10 a month, for this enormous cost, easily a $20-30,000 visit. The hospital would eventually write off his treatment as bad debt.

With mandatory insurance, this young man will be forced to find insurance, and his healthcare should be covered. There are so many provisions in the ACA that benefit patients with bleeding disorders, indeed anyone with chronic health disorders. But the stage is set for November: how will this ruling impact the presidential elections?

Maybe it will inspire more Americans to get out and vote. It’s only by persistent advocacy that we have even come this far. I don’t know what the future will bring, but I am breathing a little easier tonight knowing my son is covered for one more year, even while wondering what financial impact this will have on us all long term.

For more information, visit www.hemophiliafed.org or call 1-800-230-9797.

Thanks to Tom Bennett, Executive Director, Hemophilia of North Carolina for sharing the HFA alert with us.

Making Sense of Insurance Reform

Laurie Kelley October 25, 2010


PPACA—mean anything to you? It’s the new Patient Protection and Affordable Care Act, the historic health care reform bill that was signed into law earlier this year. It’s the thing that has the upcoming Congressional elections electrified. It has some calling Obama a socialist, others calling him a savior. Beyond the rhetoric, though, how does it or will it impact those with bleeding disorders? (Photo: Kaaren Zielinski)

That was the topic this weekend in McLean, Virginia, for the Hemophilia of the Capital Area’s annual meeting. We brought “Pulse On The Road” to the meeting: POTR is a two-hour symposium dedicated to explaining health care reform, and answering audience members’ questions.

We opened Saturday morning with a story from Kaaren Zielinski from New York City. Kaaren’s story was profiled in the 2008 edition of PEN’s Insurance Pulse. It was so compelling that we asked her to share it with the audience. She had faithfully read her insurance policy annually, but the one year she did not… it changed. Previously she had no cap and bought factor whenever she needed for her son Michael, who used quite a lot; that year, the policy changed, a cap was installed and they blew through it in no time. In fact, they hit their limit three times before the insurance company finally told her! Too late—she now had no insurance. Kaaren noted that while the new PPACA will no longer allow caps, to our benefit, we should still maintain a vigilant watch over our policies. No one knows quite how the Congressional chips will land in another week, or how insurers will react to the new law over time. Everyone must read their policy and keep current with it.


James Romano of Patient Services Inc. (PSI) then gave a great overview of the PPACA and what we can expect in the coming years as it is phased in. Listening to him, I realized that there is an overwhelming amount of things to know, and that audience members could probably use a short glossary of terms. We all would like to think that insurance problems will get easier with the new laws, but James assured us that this is just the beginning. Again, the message is we all need to be vigilant and read, ask questions and never become complacent.

Community Forum followed for the next hour. Joining us were: Mike Bradley, Vice President, Healthcare Economics and Reimbursement for Baxter BioScience; Kisa Carter, director, Public Policy at HFA; Ruthlyn Noel, director of public policy, NHF; Mary Jane Berry, social worker at Georgetown University Hospital; and Jim Romano. The audience asked all sorts of questions related to health care reform. One mother asked what was the difference between annual caps and lifetime caps—great question. Another asked about physical therapy—would this be limited under the new reform? Someone in the back asked about whether in retaliation insurers would look to limited brand of factor access, or maybe limit homecare options? After all, someone has to pay for this and insurers will attempt to shift costs and expenses away from themselves. This stirred a lively debate for the hour.

The questions gave the panel ideas for the next time we meet, which will be in 2011. We hope to bring six more Pulse On The Road events to various chapters.

We closed the meeting with a motivational talk by Andy Matthews, long time friend and colleague. He stressed the need for teens especially to get more involved in their healthcare insurance management, but also for everyone not to see hemophilia as anything but a gift, a gift that allows us to connect as people, a gift that allows us to put life in better perspective and to see that even the heath care concerns we have make us stronger, and better equipped for life’s challenges. And Andy would know, as his story is so compelling.

The overall message of the day? Keep reading and getting educated about insurance reform; never think that someone else will take care of you and inform you of any changes—you must proactively find out what changes are being made to your plan. And be grateful—no matter how worrisome the times may be, in America, we still have the best care on earth and remain the largest factor market. One thing we have more than anyone is factor, and people who are dedicated to keeping you informed about health care reform.

Thanks to Sandi Qualley and her team for allowing us to bring Pulse On The Road to her chapter; thanks to the speakers for sharing the day with us; and thanks to Baxter BioScience for funding this much-needed resource to our community.

Great Book I Read
To Kill a Mockingbird by Harper Lee.
I read this in one sitting on the plane to India last month and could not put it down. Unforgettable characters and a timeless story of childhood during a time of racism and poverty in the Great Depression. Many of you may have seen the movie, which is excellent, and completely faithful to the book. Jem and his sister Scout endure a small town’s racism during the 1930s as their father serves as defense attorney for a black man wrongly accused of a crime against a white woman. A parallel story emerges about a neighbor who never comes out of his house, and is the focus of ridicule and suspicion, even by the children. The lessons learned about how we treat each other when we think that being different means being menacing, and how belief in the goodness of human nature will eventually win. Four stars.

National Healthcare Reform: The Aftermath

Laurie Kelley March 29, 2010

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.

HemaBlog Archives
Categories