Insurance reform

Looking Into the Future in Chicago

Laurie Kelley October 30, 2011

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.

POTR is Hot in San Antonio!

Laurie Kelley June 28, 2011

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

Laurie Kelley June 12, 2011

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

Laurie Kelley October 25, 2010

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

Laurie Kelley August 2, 2010

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 www.healthcare.gov 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!)