Pulse on the Road

Making Sense of Insurance Reform


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 savoir. 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.

Health Care Reform: Pulse On The Road


Making sense of insurance reform was the theme Saturday morning at the launch of our new program, “Pulse On The Road,” at the Indiana Hemophilia Foundation’s annual meeting. (Photo: HFI Executive Director Andrew Van Gordon)

With funding from Baxter BioScience, we brought expert speakers from several states to present stories, scenarios and solutions to an audience of 100 families. The idea is to bring to life our newsletter Pulse, which you can download here.

We started off the morning with Martin Addie, a man with hemophilia from Missouri, who shared his many trials trying to get health insurance. Martin had called me last year, asking for suggestions, and I learned that he is one person who did everything right, tapped every resource, documented everything, and yet he still could not get help with his dwindling insurance. You can read about his entire story in Pulse, but I can tell you the audience was struck by his determination and even more by his faith.

Next was Andy Matthews, a long time friend of mine. In the 16 years I’ve known Andy, I’ve actually never heard him speak and never knew he was such a motivational speaker. He focused on teens transitioning into adults, and what we can do as parents to encourage them to take control of their insurance and health.

Then came former executive director of HFI Michelle Rice, how gave a great overview of health care reform, along with dates when certain parts will be enacted. This was then followed by our “Community Forum,” with four panelists: Michelle Rice, now a regional director with NHF; Kisa Carter, Public Policy Director, HFA; Mike Bradley, Vice President, Healthcare Economics and Reimbursement, Baxter BioScience; and Judy Moore, social worker with Indiana Hemophilia and Thrombosis Center.

There was no shortage of questions posed to the panelists and the Q&A went for 50 minutes, and could have gone longer. Audience members wanted to know why we have to wait till 2014 for implementation of some parts of the healthcare reform bill; where can they go for more answers; will out-of pocket costs rise? All great questions.

After lunch we had a Meet the Expert table where folks could come and speak one-to-one with the panelists and speakers.

Next stop? Washington DC October 23, where we will present Pulse On The Road at the Hemophilia of the Capital Area’s annual meeting. Then look for POTR next year, perhaps coming to your state! In the meantime, keep reading about insurance and healthcare reform. Visit www.hemophilia.org and www.hemophiliafed.org for up-to-date information from your national hemophilia organizations.

Thanks to Baxter BioScience for funding this event, which received excellent reviews from the attendees! (Photo: Laurie and Kisa; Laurie with Carlita and Vanessa)

(Professional photos by Markey’s Rental and Staging)

Interesting Book I Just Read
The Time Traveler’s Wife
Audrey Niffenegger
This book was a gift from a friend, who thinks I time traveling when I jaunt off to developing countries. A sci-fi book that reads like a romance novel, about a man who can time travel (no explanation given) back to his own past, and even meets himself as a boy. More importantly, he meets his future wife when she is just a little girl. The story is compelling, and I confess I read all 500 words on a train ride to London, then on a 7 hour plane ride home. I couldn’t put it down! The writing style is very light, rather dry (but then, I had just finished Lord Jim by Joseph Conrad; gorgeous writing). This is like English fast food: yummy, filling, but not going to nourish your writing abilities or appreciation of the written English language. Still, there is a lot to say for fast food, especially when you tire of full course meals that you must digest slowly (like Conrad). A book about love, loss and patience; worth reading for relaxation. Two stars.

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