Always the Children

Pulse on the Road in Washington!

Sunny weather is rare in Washington state, but even the balmy temperatures could not keep away some hemophilia patients and families who wanted to learn more about healthcare reform. We had a solid turn out for “Pulse on the Road,” our unique symposium, sponsored by Baxter Healthcare Corporation, that is completely devoted to educating patients about insurance reform. As guests of the Bleeding Disorders Foundation of Washington, we presented a three-hour symposium on Saturday, September 10, to one of the most focused and interactive audiences I’ve ever seen.

To ensure families know why we got where we are, I started the session off with an overview of hemophilia’s history and how our unique history has been placed high on the radar screen of insurance companies and state governments. Did you know that the hemophilia community has enjoyed a heyday for the past 10 years, post-HIV devastation? Due to what happened to us, insurers have left us pretty much alone, not monkeying with prices or access to product choice. Those days are over, friends! I explained why over 30 minutes.

Next was Elizabeth Stoltz of Baxter Healthcare, who gave her Insurance 101 session. There are some new terms in healthcare reform that you’ll need to know, and she covered these and ones we should already know.

Michelle Rice, regional director of NHF, presented the results of a patient-focused survey from last fall, which tested to see how much bleeding disorder patients knew about their insurance and insurance reform. Results were encouraging, as high numbers knew that lifetime maximums were being eliminated and that dependents would be able to stay on their parents’ insurance until age 26. People are reading up, and that’s great!

In between each speaker we held a quick Q&A, based on the talk just given, with prizes! I’m telling you, people love these. We had speedy replies and winners, as this crowd was sharp!

Finally Jim Romano of Patient Services, Inc. (PSI) gave the keynote—an overview on the Affordable Care Act (ACA) — healthcare reform. Breaking down the many changes into digestible amounts, Jim covered how the new healthcare reform will help us, and what we need to monitor to ensure we continue to have access to the care we need.

Our message wasn’t just that we should all learn these terms and concepts–we are trying to educate families to keep the cash in their wallets. If we don’t pay attention, and know the small print, and know how ACA will affect those with chronic disorders, we may end up paying more for healthcare insurance. If we are not vigilant, the great benefits we expect from ACA—like no lifetime limits—could be challenged during upcoming elections. If you don’t know much about your own insurance policy, you may overpay.

Following the speakers we had three breakout sessions on Medicaid, Out of Pocket Costs and Advocacy. These interactive and informal gatherings always provide personalized answers to concrete problems. We were very pleased to have Cat Stulik, a social worker from Puget Sound Blood Center, join us in the Medicaid break out.

Thanks to Kristian Prill, executive director, and her team for a great morning. Thanks to Kevin Finkle for his wonderful photos! Thanks also to Baxter Healthcare Corporation for their generous sponsorship.

Visit our website (“Events”) to see where we take Pulse on the Road next!

Visit our website to download your complimentary copy of Pulse, our newsletter devoted to insurance reform for the bleeding disorder community.

Great Book I Just Read
Always the Children: A Nurse’s Story of Home and War
Anne Watts

This is a riveting memoir of a young girl, who lost her mother early and under troubling circumstances, was told she could not become a nurse by her father, and who fought every convention to follow her dream. She became a nurse, and then led a life of great adventure and drama, as she goes from one developing country to another, often in times of war, to aid the sick, the orphaned, and even lepers! Anne is fearless and has boundless compassion. You can almost feel her transformation from a naïve, shy girl, to take-charge nurse and mature woman. She is under fire in Vietnam, chatting with Bob Hope after a tragedy en route to one of his USO shows, in a hellhole refugee camp in Cambodia, and even stumbles across “haemophiliacs” in the Sudan. I wasn’t sure I would like this book as it started kind of slow, but it absolutely picked up steam, and I could not put it down. She reflects back on her life, and brings it all together at the very end… I won’t give it away, but it is a fabulous book, well written, funny, sad and powerful. Thank you Jan Howard of the Shetland Islands for sending this wonderful gift to me! Three stars.

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