Pulse on the Road

Aloha Pulse on the Road!


It’s appropriate to start off Pulse on the Road in 2012 near one of our nation’s most historical sites, Pearl Harbor, as the nation this past week holds historical debates on healthcare. But let’s not predict disaster!

Pulse on the Road welcomed 35 families of the newly founded Hawaiian Hemophilia Foundation, headed by Jennifer Chun, mother of five, including two sons with hemophilia. Jenn’s done a super job of bringing the community together to learn, support one another and network.

The day began with a presentation by Jennifer Dumont of Biogen Idec, sharing the different sciences behind long-acting factor and the various clinical studies by various companies. The race is on!

The Bayer Living With Hemophilia program was presented by Kim Shaeffer, nurse at University of Davis, California and covered all aspects of raising a child with hemophilia, including nutrition and dental care.

After lunch came Pulse on the Road, our three-hour insurance symposium. This POTR started with my historical look at healthcare in hemophilia, how the US healthcare system has treated us post HIV-era (good!) and how and why it has evolved to treat us as a generic chronic disorder–not good. Next, Michelle Rice, public policy director at NHF, shared ideas on how to compare and contrast healthcare plans with your insurer, using the NHF Insurance Toolkit. Last, Jim Romano of PSI concluded by reviewing what the Affordable Care Act is, and what Hawaii can expect from healthcare reform.

We had great audience interaction with a very informal format. In fact, so much of everything in Hawaii is informal and laid back–a really nice change of pace!

The weather was great and following yesterday’s program, Michelle, Zoraida and I today were able to see the number one attraction in Hawaii: Pearl Harbor. What an excellent and tastefully done museum, film and viewing of the Arizona. It was breathtaking and sobering. It makes you all at once feel proud to be an American, and we were respectfully silent, knowing that beneath our feet, submerged in the shallow waters lie the bodies of the sailors who perished so quickly that fateful day, December 7, 1941.

If you want to watch a great movie on Pearl Harbor, watch “Tora! Tora! Tora!”

And keep watching the news about the Supreme Court’s hearings on the Affordable Care Act; what is decided will affect us all for a long time to come.

(Thanks to Baxter for funding Pulse on the Road and to the Hawaiian Hemophilia Foundation for hosting it!)


Great Book I Just Read

Issac’s Storm by Erik Larson (Kindle edition)
Reading about the greatest natural disaster in the US seemed appropriate after seeing Pearl Harbor today. On September 8, 1900, the seaside city of Galveston, Texas was hit with the worst natural disaster that had yet ever hit the US, a colossal hurricane that muscled its way through the Caribbean Sea. Galveston was an up and coming town that wanted to rival New Orleans one day. Monitoring the weather was Issac Cline, a seasoned and educated veteran of the US weather service. But hubris also ruled; despite the many warnings in the sky and on the ground, most notably from the Cubans, the world’s weather experts whom the Americans dismissed as inferior, the storm rolled in with a devastation of Biblical proportions. This story, masterfully told, details the players, the average folks and families, and the hurricane itself in a suspenseful and heartbreaking tale. Over 6,000 men, women and children died that fateful day; Galveston never recovered, and when oil was discovered near Houston shortly afterward, Galveston became the playground of the Houston rich. Why this book has not made it to Hollywood is beyond me: it has everything needed for a blockbuster including Issac’s petty rivalry with his brother, also a weatherman, who rightly predicted the storm would be a killer. Four/five stars.

Pulse on the Road: A day at the beach!

Myrtle Beach, that is, location of the final Pulse on the Road for 2011. Zoraida and I traveled to South Carolina to Hemophilia of South Carolina’s annual meeting and to present POTR, an interactive health insurance symposium sponsored by Baxter Healthcare Corporation.

What a wonderful hemophilia organization! No surprise there—almost as soon as you land in South Carolina, you feel a difference. A genuine warmth and friendliness, with southern hospitality, that you just don’t get in many northern states. South Carolinians really know how to make you feel at home.

And what a rapt audience. We presented from 9 am until noon, a long time to discuss health insurance, but the families were attentive, engaged and asked many questions. After a warm introduction from the elegant Ms. Vidalia McTeer, I launched into the history of the hemophilia community as relates to health insurance, especially why the Golden Age of having whatever you want—product choice, access to many providers, and limited interference from payers— is coming to a close. Some points were new to this community, such as the rise of PBMs—an important player, with the current attempt by Express Scripts to buy Accredo.

Next, Marvin Poole, senior manager of Reimbursement and State Advocacy, Baxter Healthcare, gave a review of common and important health insurance terms, such as “grandfathered” and “donut-hole.” These are must-knows now that healthcare reform is upon us.

Ruthlyn Noel, manager of Public Policy, National Hemophilia Foundation (NHF), gave the results of a joint survey by NHF and HFA, to assess what consumers know about health insurance and healthcare reform. The results overall are encouraging!

Then, Kelly Fitzgerald, associate director of Government Relations, Patient Services, Inc. (PSI, gave the keynote speech on healthcare reform—the Affordable Care Act (ACA). The big year is 2014, folks—know what’s happening then!

We spiced up the talk by offering a quiz at the end of each lecture, and offering $20 to whoever gave the right answer! And why not? This is all about teaching the community how to safeguard our precious dollars, our disposable income.

Three breakout sessions allowed families to sit in more intimate setting and learn more about Medicaid, Advocacy and Out of Pocket Costs. Jennifer Meldau, RN and Nurse Coordinator at Palmetto Health, the SC hemophilia treatment center, joined us to help give the audience more specific information about South Carolina Medicaid.

Finally, we all reconvened for the Community Forum, a Q&A. Questions focused on genetic transmission of blood disorders, Tricare, advice on young adults exiting their parents’ insurance, and the likelihood of ACA being repealed by the Supreme Court. Fantastic questions from a fantastic audience.

I was very fortunate to sit with a few families individually and hear about their struggles, challenges and even triumphs. James, Susie, Sandy, April… all unique but with a common theme of bleeding disorders. There’s only one HTC in South Carolina, so many parents use local healthcare services if it’s not a life threatening bleed. But most doctors don’t know much about hemophilia—parents can actually know more than the doctor about treatment! Many South Carolina families have learned on the spot, in the midst of a crisis, how to find their voice and speak up. I was really proud to hear so many stories of these true advocates.

The most amazing thing about South Carolina is that the chapter has been run for 40 years by Roberta and Vic Fisher, a dynamic duo, and is all volunteer! Kudos to Sue Martin and the Fishers, and their team for organizing one of their biggest annual meetings. I miss South Carolina already and look forward to returning again. I hope though not for insurance reform education—wishful thinking that our government will have a breakthrough.

(Photos: Kay Scott)

Great Book I Just Read
The Water is Wide by Pat Conroy

Conroy is one of my favorite writers. In this, his first book, he provides a memoir of his first year out of college in the late 1960s, teaching mostly illiterate black children on neglected Daufuskie Island (which he calls Wamacraw), off the coast of South Carolina. Idealistic, young, confident and white, he soon learns his students are mostly illiterate, don’t know what country they live in, who the president is or even how to write. Shocked, he throws himself into the job with gusto and humor, winning his suspicious students over. His writing is superb, and the story is captivating, funny, sad and marvelous. When he learns the kids have never been off the island, or celebrated Halloween, he orchestrates a wonderful sleepover on the mainland and a Halloween outing. He refuses to use the switch on the children, and encourages them to speak up and speak out. His unorthodox techniques and agenda get him reprimands, negative attention and roadblocks from the school system, where he sees territorialism, jealousy and hypocrisy. The children are caught between a culture of dependency, fear and submissiveness from their depressed surroundings and often alcoholic or abusive parents, and a school board more interested in keeping them repressed and isolated. Conroy stands out as their champion; he leaves his mark on these impoverished children, while also growing up himself, and learning the ways of their unique island culture, and an indifferent outside world. Five stars

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.

POTR is Hot in San Antonio!

Insurance is still the hottest subject in bleeding disorders, and this past weekend in San Antonio really proved it. We had a great 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 Texas Central Hemophilia Association and Lone Star Chapter of NHF, we presented a three-hour symposium on Sunday, June 26, from 7 am to 10 am, to an audience of over 200 patients and their families.

The chapters did an excellent job of attracting patients and families to attend. With hundreds of family members and a fair amount of industry representatives, this was a stellar meeting. I loved seeing the children with hemophilia scampering about, or holding relay races in the hallways as part of the supervised kids’ programs. No joint problems anywhere!

While a nutritious, hot breakfast was served, I started the session Sunday morning 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. My talk was followed by Elizabeth Stoltz of Baxter Healthcare, who gave an Insurance 101 session; her talk covered common terms that all families will need to know to navigate healthcare reform. Then, Michelle Rice 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.

Finally Jim Romano of Patient Services, Incorporated (PSI) gave the keynote about 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.

To spice things up and keep our audience sharp at such an early hour, I asked the audience after each presenter a question, and whoever got the right answer won cash! The message: we are trying to educate to keep the cash in your wallets. If you don’t know much about your own insurance policy, you may overpay. If you don’t know how insurance reform will impact you, you may lose money. In these economic times, we want every family to preserve their hard-earned dollars. The “competition” added some fun to the topic of insurance and we had some sharp people in the audience!

Following the speakers we had three breakout sessions on Medicaid, Out of Pocket Costs and Advocacy. Everyone agreed that 45 minutes for break out was not enough. These interactive and informal gatherings proved the highlight of the meeting. Patients were able to ask questions about their personal situation with experts in their field. Jim Passamano, of Sufian & Passamano LLP, a lawyer specializing in chronic disorder and insurance, helped explain Medicaid changes to many families. Shannon Brown, a social worker from Texas, spelled out certain out of pocket costs that patients will need to monitor closely. And Michelle Rice of NHF presented a new personal tool to help families get a handle on comparing insurance plans.

Simultaneous translation into Spanish helped the many Spanish-speaking families understand how healthcare reform may impact them.
Patients truly appreciated the three-hour program and the chance to speak to insurance experts in bleeding disorders. “I would like to have attended all the [break out] sessions and not just one!” commented one attendee. “I’m very pleased at how much I learned and all the wonderful people I met!” exclaimed another. When asked if they learned something new, every hand in the room was raised!

Thanks to Luis and Shannon, executive directors of their chapters, and coordinators of the event, for inviting us, and to Baxter Healthcare Corporation for their 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.

Interesting Book I Just Read
Altitude Illness: Prevention & Treatment
Stephen-Bezruchka, MD
This is a small book, written to be taken while trekking on mid- to high-altitude mountains. I read most of it on one plane ride. It’s chock full of good information, and goes into great (and scary) detail of what can happen to you if you are not careful on the mountains. It’s very dry, terse, to the point, and may make you think twice about attempting the big ones. Too late for me! I am going to tackle Mt. Kilimanjaro in August. The strange thing about altitude sickness is you just never know who it will strike. Marathoners and top athletes, like Martina Navratilova, can get it, and 12 year olds with limited climbing experience may avoid it. You never know till you are there. Two stars.

Healthcare Reform in Action: Wisconsin


Zoraida and I spent the weekend in Wisconsin Dells, Wisconsin, at the Great Lakes Hemophilia Foundation annual meeting. On Saturday we presented “Pulse on the Road,” which brings our annual newsletter about healthcare insurance reform live to hemophilia families across the country.

We had a wonderful turnout: Karin Daniels and her team really deserve a round of applause for the hard work that went behind this!

We opened the morning with a look at how our hemophilia community has changed through the past 15 years concerning product, pricing and reimbursement, and how we stand now. Insurance companies, “payers,” once reluctant to touch hemophilia, though it was increasingly an expensive disorder to treat, eventually overcame hesitancy when the increase in healthcare costs forced both payers and state health programs to scrutinize hemophilia products.

Elizabeth Stoltz of Baxter presented “Insurance 101,” and reviewed key terms and concepts that everyone needs to know to navigate the new landscape of hemophilia healthcare reform.

Ruthlyn Noel, policy manager with the NHF, presented survey results from the 2010 patient survey about healthcare. The good news is that all our efforts to educate the public is working: between 80-90% of respondents knew that lifetime limits had been removed and that children can stay on their parents’ insurance plans until age 26.

Finally, Jim Romano of PSI presented Healthcare Reform, now called “The Affordable Care Act,” and how it will impact hemophilia. While most of the action starts in 2014, there are many things we all need to know to prepare for the many changes. Jim talked about the central issue, mandated insurance, and how the government will assist in getting coverage, from “exchanges” to state tax credits to expanding Medicaid.

After a short break we had three breaks out sessions, on advocacy, out-of-pocket costs, and Medicaid. Families really enjoyed the informal and one-to-one attention from the speakers.

Then we reconvened to have an open Q&A: this was a great tie for families to present their personal concerns or general questions. One question concerned hospitals: what do parents do when they bring their child in to the emergency room and are forced to buy the hospital factor? One father shared that his one hospital visit was $100,000! Clearly his factor was marked up 400% or higher. He received great advice about why this might happen, and how to prevent it from happening again.

After the program, families had more sessions by local speakers and HTC staff. After dinner, they had the opportunity to visit the water park. It was a wonderful weekend, filled with information and fun!

Great Book I Just Read
The Worlds of a Maasai Warrior by Tepilit Ole Saitoti
This fascinating book is told by a man who grew up in the 1960s as a Maasai, the tribal group that dominates eastern Tanzania and Kenya. Nomads to this day, they live in tightly knit families, and family life focuses on the rearing of cows, as currency, as food source, as their future. The Maasai are known for their colorful red clothing, and are proud of their warriors, who are initiated into manhood by a circumcision ritual and ability to spear a lion in self-defense. Tepilit had a remarkable life: growing up on the African Serengeti in complete simplicity but at one with nature. When his father sends him to a Christian school to be educated, he is introduced to new universe, and his life becomes one vast adventure that eventually lands him in Hollywood and the central character in a National Geographic movie. The book beautifully describes Maasai life, and then will make you smile or laugh out loud with Tepilit’s charmingly naive descriptions of his first automobile ride, plane ride, and impression of New York City. I met a 20-year-old Maasai warrior last year in Kenya, and chatted with him about his life. He easily walks three days in the utterly dangerous savanna, armed with only a spear and knife. He told me, “Anything I need, the earth provides.” I have great respect for the Maasai and truly enjoyed this autobiography. Three stars.

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