June 2011

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.

Leeches: A Treatment of Hemophilia

This is an amazing account sent to me by my colleague and the president of Hemophilia of North Carolina, Richard Atwood. Richard is a regular PEN contributor. This article is about…. leeches. Not for the faint of heart.


In 1839, Mr. R. Liston at University College Hospital in London, England reported on a case of hereditary hemorrhagic diathesis. His patient, S.P., was a 32-year-old farmer with temperate habits. He was a large man, strong and healthy, with a smooth, fair complexion, dark-grey eyes, dark hair, and sandy whiskers. S.P. reported having lost alarming quantities of blood from extraction of teeth; he was treated with pressure and cautery. At age 19, he had a small wart cut from his hip; he lost so much blood that he fainted and was debilitated for several days. The family history revealed that his maternal grandfather and 6 brothers were also affected with the same peculiarity of constitution.

In February 1839, S.P. fell and hurt his back and loins. Several days later he experienced sudden pain in his left groin, with pain in his left thigh down to his knee. A surgeon examined the subsequent swelling in the groin and ordered leeches. After 2 leeches were applied, the resulting hemorrhage could not be suppressed. The mass in the left groin was about the size of the patient’s fist, similar to a hernia. S.P. was admitted to University College Hospital on March 8, 1839. The abscess was opened with the potassa fusa resulting in slight bleeding. This blood was examined under microscope and found to be deficient of fibrine and in a bad state, containing a proportion of globules characteristic of pus. The patient was discharged… cured.

In 1840, David Burnes MD of Bloomsbury Square, in London, England reported on hemorrhagic diathesis in 3 brothers: 44-year-old William, 30-year-old Charles, and 25-year-old John. In addition, 2 maternal uncles had a tendency to bleed easily, while their mother, 4 sisters, and 3 other brothers, all over 20 years, did not develop this peculiarity.

In July, 1939, William was seized with inflammation of the testis. The usual remedies were ordered including 4 leeches to the scrotum. This treatment removed the disease, but blood continued to ooze from the leech-bites for several days to the point of debilitation. After spontaneous coagulation of the blood over the wounds, William improved much in about 28 days. He then pushed his hand through a pane of glass while opening the window and cut his thumb on the outer side. The free bleeding from the wound was temporarily arrested with adhesive straps until the inflammation of the hand required their removal. The subsequent freely oozing blood continued in spite of the use of styptics, pressure on the radial artery, and ligature. The irritable, greatly debilitated, and almost blanched patient was kept in bed and starved! The treatment of digitalis, ipecacuanha, and nitrate of potash was ordered, along with keeping the wound constantly wet with a lotion of spirit and muriate of ammonia. After a clot formed, the wound healed 24 days from the accident.

Charles, who had a slender frame and great muscular strength, presented in March 1837 for symptoms of enteritis. Charles stated that he and other family members bled easily and declined being bled from the arm. Instead, 6 leeches were applied over the pain on the left side of the umbilicus. This treatment instantly arrested his disease, but blood continued to ooze for 8 days from the leech wounds. After a vexatious confinement to bed caused more by the remedy than the disease, Charles recovered.

While out shooting in October 1827, John fell from his horse and sustained a severe injury to his arm. The day after his biceps were swollen and exceedingly inflamed and his forearm was bruised from elbow to wrist. An order was made for 12 leeches with bleeding encouraged by warm fomentations along with aperients and other medicines. The hemorrhage could not be stopped by pressure, alum, flour, or cobwebs, until nitras argenti was applied. John had constant oozing of blood over several days and subsequently died from loss of blood.

Dr. Burnes noted that hemorrhagic diathesis is hereditary and peculiar to males. He corroborated the opinion that hemorrhagic diathesis arose from a deficiency in the contractile power of the arteries, though he mentioned that the blood seemed less disposed to coagulate and appeared to be mixed with water.

And why leeches? Leeches were used for every kind of ailment during this time in medical history. They certainly didn’t stop bleeding; while attached, leeches secrete hirudin to prevent coagulation of the blood!


Burnes D
1840 Haemorrhagic diathesis Lancet ii:404-406.
Liston R
1839 Haemorrhagic idiosyncrasy. Lancet i:137-8.

Great Book I Just Read
The Johnstown Flood by David McCullough [Kindle edition]

The Johnstown Flood is usually a sidebar and two paragraphs in a high school history book. McCullough, our nation’s master storyteller of American history, makes this a page-turning, electrifying account of the Katrina of the 1880s. You will gasp and may cry while reading this. McCullough at once has given an accurate account, written like a novel, and serves as a memorial. The South Fork Dam served to create an aquatic playground for the super rich of Philadelphia, and despite warnings of the lack of an overflow drain, and various weak spots, nothing was done. Townspeople who lived below the dam often wondered and worried, but no one ever believed anything could possibly go wrong. Then it rained… like the Deluge. And the consequences were as dire. On May 31, 1889, the weakened, earth-made, South Fork Dam burst, and pounded and shredded everything in its path. Trees, dirt, horses, fences, barbed wire gathered like a wall of destruction, hell-bent for Johnstown, its denizens unaware of the horror about to be. Over 2,000 lost their lives in the most horrific ways; entire families of hard working people died. When it was over, grief turned to anger at the rich, at the paparazzi that came to gawk. This is a fascinating story, gut-wrenching and masterfully told. Read it. And take the time to read all the names at the end of those who died. Four stars.

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.

Let’s Bring Kyle Home!

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

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/

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