Healthcare Reform in Action: Wisconsin

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.

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 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.

Trouble with Teens and Insurance

This weekend I attended the Arizona Association’s fifth annual family meeting, which had great guest speakers and huge turnout. I always love to visit Arizona, my second favorite state (thought Wyoming must come in a close third, as almost nothing can compare to the splendor and wonder of Yellowstone National Park).

The focus was on two things: transitioning teens, and insurance. The audience and I were riveted to speaker Jeff Leiken, who delved into the world of teenage boys and the lack of motivation, growth and development; their sense of hopelessness and addiction to video games. Bold subject, but backed by research: video gaming is altering the moods and even the wiring of our kids’ brains. Jeff pointed out how life is passing our kids by, how much they are missing by isolating themselves from others and socializing purely through the computer. Not healthy. And as we adults indulge our kids, we keep them from interacting with other adults, where they can explore possible mentors on which to model their lives. Jeff encouraged us to ask our teens tough questions: who are their role models for leadership—Kobe Bryant or Nelson Mandela? Guys who own stuff or guys who change the world? What movies do you watch: how do you feel afterwards? Which movies inspire you?

The talk was so good that parents congregated in the hallways afterwards, sharing concerns about their own children. And we didn’t even touch upon hemophilia!

On Sunday, there was a three-hour insurance symposium. I spoke about the history of our current insurance challenges: when did this all start, how does hemophilia fit in and what do parents need to know from history? Mike Bradley, Vice President, Healthcare Economics and Reimbursement at Baxter BioScience, spoke about current health care reform, specifically the Patient Protection and Affordable Care Act. Mike pointed out the many components of the plan, and stressed the positive aspects of not having lifetime limits or preexisting condition clauses. But he also reminded us that the “devil is in the details,” and many details remain to be settled. He left us with a list of resources to check, including: your employer’s Human Resources Department, current insurance company, specialty pharmacy provider, the Bleeding Disorders Legal Hotline (800-520-6154), and HTC Social Worker, if you have one.
(Photos: Cindy Komar, Kisa Carter, Mike Bradley, Laurie Kelley; Michelle of HFA with a great giveaway!)

And visit for a good explanation of the new legislation.

Last speaker was Kisa Carter, director of Public Policy for Hemophilia Federation of America (HFA). Kisa stressed how parents and patients can get more involved on many levels in supporting their state to advocate to protect access to health care. One thing we worry about is the backlash from the current legislation: will premiums rise? Will out of pocket expenses increase? These are the things we must protect against.

Congratulations to Cindy Komar and her board of directors for a well planned event, with attentive families and great logistics. It’s a pleasure to visit Arizona, and this Association. (Photos to follow after I get home!)

Is Tonight the Night for Health Care Reform?

This could be an historic night, and certainly a polarizing one across America. Why not just refer to the wonderful Friday Update email I get every Friday from Kisa Carter at HFA? On Friday she wrote:

“The House is expected to vote on an amended version of the Senate Bill on Sunday. If passed, the bill will enact the Senate version of the health care reform bill with the House bill changes. The President and Speaker of the House Nancy Pelosi have spent the week discussing the bill and seem confident that the bill will be brought to the House floor for a vote in the next 72 hours. A section by section analysis of the changes made in the reconciliation bill can be found at:”

CNN reports active debate happening even as I write: at 8:58 p.m. “Democratic Rep. Tim Bishop of New York said that “amidst angry and at times even hateful rhetoric, amidst the misinformation and scare tactics, there exists one simple truth, and that truth is that the current system is unsustainable.” And Republican Rep. Tom Price, a doctor from Georgia, said health care is a “moral endeavor and should be grounded in principle. This is a sad day, yes, because there are so many wonderful and positive and patient-centered solutions that could be enacted.” Earlier, in an impassioned speech, Rep. John Lewis, D-Georgia, urged his colleagues to pass the bill.

Tomorrow morning should have big news for us in the bleeding disorders community. One good news is that in the current bill the House voted to eliminate lifetime limits on all plans, effective six months after the bill passes, Kisa says. She adds, “Annual limits will be eliminated by 2014 and have restrictions on annual limits until then. This is great news for the bleeding disorders community. Below are a few links to the Congressional Budget office’s reports on the latest version of the House bill.”

This has been a gut-wrenching year for everyone, as the nation tries to enact health care reform but digs in its heels on different principles regarding how to do it. For us, even if the only thing that changed were that lifetime limits were eliminated, it would be a victory.

(Please sign up for Kisa’s Friday Update by visiting

HFA’s Outstanding Insurance Advocacy

I have been so impressed with the publications and postings coming from the Hemophilia Federation of America, once a small-time, grassroots nonprofit, and now after 10 years, poised to become one of our strongest voices to Congress and industry. With the additions of Steve May and Kisa Carter, HFA has become a professional powerhouse of insurance publications.

I completely endorse their outstanding work. Please sign up to get their “Friday Update,” available through the colorful, active website:

The timing couldn’t be better with big changes coming via health care reform. This article ran two weeks ago, about “medical debt.”

States begin to address medical debt
November 19th, 2009 by Steve May
Paying for health care is becoming increasingly difficult for American families. Fewer workers are receiving health coverage through their jobs, and those who do have job-based coverage face rising out-of-pocket costs. Not surprisingly, more families are going into debt trying to pay for the health care they need. The health reform proposals that are currently before Congress would prevent millions of families from accruing medical debt by making insurance affordable for people who are now uninsured, capping out-of-pocket costs for those with insurance, and making sure that people with low incomes have lower out-of-pocket costs. Some provisions in these bills will go further by helping people who are struggling with medical debt.

While these bills will help families and individuals avoid getting into medical debt, they don’t address every aspect of this complex problem. That’s where states come in. Some states have already taken action to ensure that low-income, uninsured or underinsured Americans are charged fair prices for their care, do not face high interest charges when they cannot afford to pay their medical bills immediately, and are protected from aggressive debt collection practices

Families USA has just issued a report which begins to address the various state efforts to curb the dire impacts medical debt has on people who are addressing illnesses. For more information about the Families USA report follow the link attached here:

Also check out:

There are also some wonderful videos of actually patients sharing their stories–fabulous idea. Take advantage of the great and easy-to-read publications that HFA offers; write today and start receiving. Remember, they are working hard for all of us, and for your child’s future!

Great Book I Just Read
Shackleton’s Forgotten Men by Lennard Bickel

I am a huge polar explorer fan, and love to read every book I can about the subject, particularly the South Pole. This book pays tribute to the men who were the second half of Ernest Shackleton’s famed Imperial TransAntarctic Expedition of 1914. All of the attention has been put on Shackleton’s seemingly miraculous stamina, leadership skills and story as he saved all his men from near disaster in perhaps the greatest survival story every told. But while leadership books boast that not one died under his watch, this was not entirely true. On the other side of the Antarctic was the Aurora and its crew, set to lay out the numerous depots of food that Shackleton would need as he traversed the Antarctic on foot–a feat he did not accomplish. This book tells in riveting detail their story. Like Shackleton, the group lost their ship and supplies, and they suffered horribly. Only they never got the recognition for their heroic sacrifices. Fabulous storytelling by Bickel who also wrote Mawson’s Will, about the legendary Australian geologist and explorer, and teammate of Shackleton. I read this book in two nights! Four stars.

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