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While a winter storm gathered back on the east coast, I was in Chicago for a meeting with the Bayer Multidisciplinary Board Meeting. This is a group of thought leaders from the hemophilia community who meet once a year to discuss current trends in treatment, products and insurance, and predictions of what the community will look like and need in five to ten years.
I was unable to attend last year’s meeting at this time, so it was very nice to be back with the group, all of whom I knew. The team includes top hematologists, insurance experts, some adult patients, and homecare, distributor and nonprofit representatives. Of course, the hot topic is insurance! How are payers affecting the decisions being made now on treatment choices and product pipeline? For example, it’s already happening that payers are dictating brand choices in some places, said one participant. The impending merger of Express Scripts and Medco, two of the three largest PBMs, will radically upset the hemophilia apple cart and change the hemophilia landscape forever. Exactly how that will change was open to much speculation.
The most extreme prediction involved the fate of HTCs. One prediction is that in ten years there will only be half the current number of HTCs operating. There will be fewer hematologists. “We are victim of our own success,” expressed one doctor. Hemophilia has become so manageable that patients are less dependent on the HTCs. With cuts in federal funding, expect to see many close their doors forever. I saw this myself in New Mexico, where the HTC is struggling.
The bleak forecasts were accompanied by good news: treatments are better than ever, allowing a more normal life. Newer products, greater choice and who knows, maybe even cheaper products. Stay tuned–in 2012 I will provide a forecast by our community experts on what you can expect in the next ten years. It’s going to be a roller coaster ride, folks.
Interesting Book I Just Read
Sing You Home
Jodi Picoult
I normally don’t read fiction unless it’s a classic. This book was given to me as a gift. It tackles several hot buttons: gay rights, surrogate pregnancies, Christian fundamentalism. A music therapist—Zoe—finds herself childless at age 40, after a stillbirth. After her husband Max leaves her, Zoe eventually falls in love—with female counselor Vanessa. Eventually they wed in Massachusetts, my home state, and the first to make same-sex weddings legal.
Max, a recovering alcoholic, begins to attend a fundamentalist Christian church at the behest of his brother. The pastor is anti-gay. Max becomes a born again Christian.
The plot really thickens when Zoe asks Max to release one of their stored embryos to her so that Vanessa can carry their child, for the two women to raise; he counters by suing her for custody of them. So the book covers controversial issues as gay rights, evangelical Christians, in vitro fertilization, surrogate parenthood, and divorce. All this happens within six months! The story is from the points of view of three characters in alternating chapters. It’s a thought-provoking book on change, tolerance and what constitutes a family, when the biological parents have such different beliefs and life-styles.
Life is more complicated than presented here, however. Max became a born-again just in time as a set up to the ethical question of who should raise the kids. Christian fundamentalists seem very stereotyped. There are a lot of issues competing for the readers’ attention, and the ending is too neatly wrapped up, too quickly. But if you like to read, want a book to stimulate some thoughts about many current topics, this is one you can get through quickly. As an editor, I tend to be pretty harsh on how a book is written, but sometimes it’s nice just to read a different kind of book. Two stars.
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.
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 tribe 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.
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.
