Laurie Kelley

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.

Let’s Bring Kyle Home!

Laurie Kelley June 6, 2011

There can be no image sadder to a mother perhaps than to think of a child left in an orphanage. When she tucks her own children into bed at night, giving them a kiss and turning out the lights, available all night long if her little one has a bad dream or is scared or lonely, she may think of another one like her son, alone, without a mother to call his own, to tend to his unique needs.

This is what haunted Danielle Stermer for months, especially wondering what living in an orphange must be like when a child has hemophilia. Her own son Max, only 18 months, who has hemophilia A, is doing well, but what about other boys in developing countries? Danielle lost her brother to hemophilia when he had a brain bleed 16 years ago, and thoughts of him and little boys overseas with hemophilia and no home or family truly haunted her. She knew she had to find a child and help him.

After a dedicated search she has found her little boy—Kyle, who has hemophilia A and lives in China. Danielle is desperate to bring him “home,” to America. She writes, “He was abandoned at 8 months old in a hospital in Shanghai, with a brain bleed due to a fall from a bed, and intramuscular bleed due to an injection, as well as respiratory infection and anemia. He has had many bleeds so far, including GI and shoulder bleeds. Every report I have read from the hospital shows him as malnourished and with respiratory infections.”

And perhaps most upsetting, “He is not allowed to go outside to play because of his hemophilia.”

For the past year, Danielle has filed paperwork, raised money, invested her life’s saving. She was recenty approved to adopt Kyle!

The only thing now preventing her from bringing him home is the cost. At a whopping $26,000, a foreign adoption is prohibitively expensive. Danielle expects to spend about $15,000 of her own money, and is seeking an additional $10,000 from the US hemophilia community.

Last fall we succeeded in raising $17,000 in only 48 hours when this community poured out its heart to bring “Luke”, also from China, home. He is now growing up in Michigan. In the past, we’ve helped bring a boy from Bulgaria and Vietnam to the US, all who have hemophilia.

Let’s do it again! Let’s bring Kyle home!

I will put in the first $250. Who will join us? How soon will we be able to bring this little guy to the land of milk and honey—and factor? We will be tracking the donations and seeing how quickly we can do this. If we all chip in, this shouldn’t take long at all. Think of what your contribution can do—completely change the life of a little one with hemophilia, in a land where factor is scarce to nonexistent, and where there are no parents to love him each day, or tuck him in each night. He is four years old—there is not a minute to lose!

To donate: Please mail a check directly to
Wasatch Adoptions
11430 36th street, #204
Ogden UT 84403

Put “Stermer/Kyle adoption” in the memo field. Wasatch Adoptions is a non-profit 501(c)3, and will immediately send you a receipt and letter for tax-deduction purposes, and will notify Danielle so she can thank you!

You can also go to
http://www.active.com/donate/kyleshope

Please visit Watsatch Agency at http://www.wiaa.org/ if you have any questions about the adoption. And visit Danielle’s blog at http://www.kyleshope.blogspot.com/

Memorial Day of a Different Sort

Laurie Kelley May 30, 2011

Today is Memorial Day in the US, where we remember and honor those brave soldiers who fought in wars to protect our country and liberate others. It would be hard to find a family who does not have someone in it who gave their life for their country. I have at least one in my family: my uncle Jim Morrow, my father’s brother, who died in 1967 in Viet Nam. We find ways to remember our brave heroes: Jim has a place of honor on the Vietnam Wall in Washington DC, and on the virtual Wall, on line.

This week we will also remember heroes from a different war: HIV.

On June 2, PBS will at last broadcast Bad Blood: A Cautionary Tale, by Marilyn Ness. This emotional, deeply moving documentary portrays life with hemophilia before the “war,” when there was no blood clotting factor. This in itself can bring you to tears, watching children hobble about on crutches, suffering with joint bleeds, in hospital beds when they should be out in the sunshine playing. Then, the miracle of factor, and how it transformed lives from being crippled to being freed. Factor liberated all the children from this sad fate.

Who could have ever, in their wildest dreams, known that in the late 1970s a virus, unlike anything the world had ever seen, lurked in the nation’s blood supply? This is the stuff of science fiction, not reality. But it became our reality. Thousands were infected, and thousands died horrible deaths.

I know personally almost many of the heroes in the film: Dana Kuhn, Bob Massie, and Glenn Pierce. Bob says, this “is the story of a failed medical system, of companies and politicians putting profits before people, and of patients being kept in the dark about their very lives… It is the story of a critical piece of American history, when thousands of patients, doctors, and families came together to repair a broken system.”

Here is also Bob’s statement, which best expresses the heroism evident in those infected: “When I learned, more than twenty-five years ago, that my lifesaving injections had exposed me to a dangerous virus, I made the resolution to continue living each day, always staying true to myself and those I loved, and never giving up hope. I was lucky, and overcame them both with the help of world-class medical care and the love and support of my friends and family.” Bob is now running for US Senate.

But thousands of others were not so lucky. Like fallen soldiers in a devastating, insidious war, they are now remembered and honored in Bad Blood, which memorializes their struggle, their sacrifice and their legacy. Bad Blood is their local memorial park, their Viet Nam wall, their Iwo Jima monument. Clearly, their deaths, and the determined action of the survivors to seek justice and a change in the blood collection system and factor production, have made hemophilia treatments– and our entire blood banking syste–safer.

I cannot stress strongly enough to watch the movie. If you want to know the psyche of the US hemophilia community, understand its anguish and advocacy and determination, you must see this movie. If you want to see true American heroes, watch this movie. It’s not just a documentary, but a memorial to fallen soldiers.

Bad Blood is showing on WGBH at 10AM, 4PM, 6PM, and 11PM on June 2nd. Please forward and share this with your friends, family, community members, and anyone in the medical field.

Great Book I Just Read

Johnny Got His Gun
by Dalton Trumbo

You may have, like me, read this book in high school. It’s worth another read. Written in 1959, the novel was actually written in 1938 and published just after the start of World War II. This is the story of Joe Bonham, a youjng American WWI soldier who is horrifically disfigured and disabled. Told only from Joe’s thoughts and memories, Joe slowly becomes conscious and then must decipher what is happening to him. He realizes slowly he has lost all his limbs and his face; how does he cope with this horrific realization? All he has left is his skin and ears as sensory organs; he struggles to control his panicky mind.

Memories of home and family flood him; he reflects on why he went to war. Trumbo has a message, one that not all Americans in these times may want to hear. But we grow as humans when we read what we don’t always agree with; the horror of war, its terrible human cost. It can be viewed as a book about war and its effects (think of the thousands of scarred soldiers returning now; for second year in a row, the US military has lost more troops to suicide than to combat in Iraq and Afghan) or simply about the strength of the human spirit and surviving unimaginable loss in any field, at any time. This book is worth a read, though there are problems with run on sentences, grammar, etc. Two stars.

Refer a Friend, Get $10!

Laurie Kelley May 23, 2011

Well, the world didn’t end on Saturday so it’s back to business tomorrow. And this week we have a special campaign: to try to increase the number of people who read our newsletter PEN. I mean, there are about 17,000 people in the US who have hemophilia. Where are they? We want you to help us find them.

We are offering $10 for each new person with hemophilia or VWD that you refer to our mailing list for PEN. It’s good for them —they get to read about their disorder, new books and services we offer, and get updates on insurance. It’s good for you—you get $10 for each person who signs up. Use your FB page, email, Twitter account… and tell them to tell me YOU sent them. That way we can cut you a check.

It starts tomorrow…Monday, May 23, 7:00 am EST through Friday, May 27, 11:59 pm EST. Five days only! There is no limit to the number of friends you refer, but they must share their diagnosis and your name. And whoever refers the most number of friends will receive a copy of the movie Bad Blood: A Cautionary Tale!

What are the rules? Easy:

1. You must already be on our mailing list.
2. Your friend must have hemophilia or VWD, or have a family member under age 18 living in the household who has hemophilia or VWD.
3. Your friend must be new to our mailing list.
4. Your friend must be a US citizen.

I think that’s it; let’s see what kind of numbers we get by end of week. To refer friends, send them to our homepage, click on the sad-faced dog at the top (waiting for a friend) and your friend can fill out a form. Any questions? Call us at 978-352-7657. Thanks to all our faithful subscribers! This is a way to thank you and help others are the same time.

Great Book I Just Read
Helter Skelter by Vincent Bugliosi and Curt Gentry

Charles Manson has become a cultural reference for any violent, cultish guru with inexplicable powers over people, but what really happened that night in 1969 in Los Angeles? “The Sharon Tate Murders” has a complicated history, expertly laid out by chief prosecutor Vincent Bugliosi in this book. Slowly, deftly he reveals what happened the night the beautiful and pregnant actress and wife of movie producer Roman Polanski was murdered, along with several other people. Nearby, two more murders of Rosemary and Leno LaBianca. On their refrigerator, inscribed in their blood were the misspelled words, “Healter Skelter.” There appeared to be no motive.

The burden falls on Bugliosi to prove that Manson commanded the murders. He reveals the incredible apathy and bungling of the LAPD; the incompetence of the autopsy doctor; the brilliance of Manson and his followers–most of whom were just young adults. Step by step, lead by lead, test by test, interview by interview, he pieces together his day in court with the “Family.” The book leads you along smoothly, and is a page turner. It goes into great detail about how the case is presented in court, how the judge reacts, how Manson reacts and the counter moves by the defense. In the process, Bugliosi rips the lid off of Manson’s wild beliefs and apocalyptic plans: a wholesale destruction of society and the rise of white people to have dominion over other races.

This was one of the most famous trials of the century, told here by the most important person involved in the case, who successfully put a mass murderer, cultist, and anarchist away for life. Fascinating, frightening and powerful. Four stars.

A Decade of Dedication!

Laurie Kelley May 16, 2011

Overcast skies gave way at the last minute to sunshine as 150 guests joined Thursday night to celebrate 10 years of helping children with hemophilia in impoverished countries at the Save One Life Decade of Dedication Gala, in Topsfield, Massachusetts. It was a wonderful evening and our first major fundraiser. (Photos: [top rt] Val Bias, NHF, Laurie Kelley, Maureen Miruka; [bottom rt] Usha (India), Adriana (Romania), Maureen (Kenya)

Guests came from Texas, Tennesee, New Jersey and Ohio in the US, and India and Kenya internationally. The attendees were a mix of corporate donors, individual donors and sponsors of children with hemophilia. Adriana Hendersen of North Carolina, dressed in traditional Romanian attire, represented our Romanian partners. Even the band, Wildest Dreams, included musicians with various nationalities, as they played “Save a Life” in honor of our achievement.

Chairman of the board Chris Lamb started the evening by thanking everyone for attending, thanking our corporate donors, especially Octapharma, which was our presenting sponsor of the event. He reminded everyone that while we are now sponsoring 758 children in 11 countries, we hoped to reach our goal of 1,000 this year. Executive director Martha Hopewell recounted how Save One Life began, after I had visited the home of Mohammad Ali in Karachi, Pakistan in 1999, and learned that only $20 a month would keep that 8-year-old boy in school, to give him a better life. Save One Life offers sponsorships for individual children with hemophilia in developing countries for only $20 a month.

Then Maureen Miruka, stunningly adorned in a traditional red Masai outfit, shared what life is like in Kenya with hemophilia, and how her two first-born sons died young of complications related to hemophilia. This compelled her to do something to change the medical system and to improve the lives of those with hemophilia in Kenya. She is now president of the Jose Memorial Hemophilia Society.

During a delicious dinner with complimentary wine, I then presented the awards: Program Partner of the Year went to Hemophilia of the Philippines-Cebu, particularly to Ms. Agnes Co who always provides her reports on time and completed, making our job easier! Sponsor of the Year went to Mr. Wolfgang Marguerre, chairman of Octapharma, for his sponsorship of 70 children. And finally, a special award went to my mother, Eileen Morrow, of Springfield, Massachusetts, who was in attendance, for her amazing donation. She has gifted 50 acres of land in Charlton, Massachusetts to Save One Life to start an endowment in my grandmother’s name. The land is worth about half a million dollars and represents most of our family’s inheritance. The endowment, the Florence Ashe Hogan Memorial Endowment, will yield investment returns annually which can be used for operating expenses at Save One Life.

Finally, my friend and colleague Usha Parthasarathy, shared our experiences together traveling throughout India last fall, and reminded everyone that India represents half the number of beneficiaries in Save One Life. It’s an important country and program partner, where great things are happening. For example, Avik, a poor boy from Calcutta whose father is a humble shop owner who sells tea, completed his Save One Life sponsorship by finishing medical school, is now a doctor, and he passed along his sponsorship to another impoverished family!

Wildest Dreams then performed “One Voice,” a song they had already written, but which happens to be the name of our newsletter!

Everyone commented on how classy the event was, what a great time they had, and how proud they were of Save One Life!

To sponsor a child in need: www.SaveOneLife.net

Thanks to the corporate sponsors, including Octapharma, CSL Behring, Baxter, Biogen Idec, Novo Nordisk, New England BioLAbs, Kedrion, FFF, ASD Healthcare and Pfizer, which made the event possible. Also sponsoring Founder’s Tables: Accredo’s Hemophilia Health Services, American Homecare Federation, Bayer Healthcare, Talecris and Kedrion, James and Heidi Ellard, Milton Kerstein and Kerstein, Coren and Lichtenstein, and Chris Lamb. BDI Pharma supplied gift bags and BDRN provided videographer services. Quality Graphics printed the programs for free and Cambridge BioMarketing provided gala design materials.

Great Book I Just Read
Wyatt Earp: The Life Behind the Legend [Kindle Edition]
Casey Tefertillera

Best known for his role in the legendary shootout at the OK Corral in 1886, Earp was more than the most famous US federal marshall. This book expertly follows his life from Kansas to Arizona to California, and his career as gambler, saloon keeper, security guard, federal marshall and small-time land speculator. He was a complex man: a Peacekeeper and expert shot who loathed to shoot; a lawman who loved to gamble and keep with prostitutes. A man who evaded bullets in the thick of a gunfight. A lawman who took the law into his own hands and led his famous vendetta against the “Cowboys” who killed his brother. No wonder he became an American legend through countless articles, movies, TV shows, and books.

This book is extremely well written and researched. Tefertiller is a journalist and is shows with his numerous references and objective style. I was fascinated by the political dueling newspapers in Tombstone and how this influenced events at the OK Corral and beyond. Tefertiller also gives an in-depth report of what happens after the shootout: the jail sentences, trials… things not shown in the glamourized movies about Earp. Most amazing is how trouble seemed to follow Earp, even years after the events in Tombstone.

The story of course is filled with real-life characters who are all now part of the legend of the Wild West: Doc Holliday, Johnny Behan, Curly Bill Brocius, Ike Clanton, Texas Jack Vermillion, Turkey Creek Johnson, Mattie, Sadie, and the Earp brothers–Jim, Warren, Virgil, and Morgan. While the movies, particularly 1993’s Tombstone, makes them into colorful characters, this book makes them real.

A highly recommended book for admirers and students of the American west and our cultural history. Four stars.