September 2011

Show Me the Tats

I read an interesting article on the newswires, concerning hemophilia and tattoos.

It seems everyone has tattoos. Teens, moms, young, old… they are as commonplace as pierced ears, and more commonplace than piercings elsewhere on the body. I saw a guy yesterday, bald, with a huge one that snaked up his neck and right up onto his bald head. It seemed dramatic, until you realize the person who walked by him also had a tattoo covering their forearm, and the mom pushing her baby in the stroller has one encircling her ankle. I feel rather outdated. I don’t sport a single tattoo.

It makes sense that people with hemophilia will have tattoos as well. I am sure if we polled them, a great many of our guys have tattoos. As do their moms, probably!

So why is Portugal up in arms about it?

“Consumer rights association highlights Portugal’s lack of body art laws July 30, 2011. Consumer rights watchdog DECO has voiced concerns about Portugal’s lack of laws regarding piercings and tattoos. The association claims that it is up to the artists to warn clients about potential risks and health hazards that body art can entail, though many fail to do so. During February and March this year DECO paid 46 visits to 29 tattoo and body piercing parlours in and around Lisbon and Oporto. The association concluded that little improvement had been made since its last investigation, which it carried out in 2005.

“According to the watchdog, none of the professionals with whom their researchers made contact enquired about the client’s present state of health, and only 18 pointed out how to properly clean and look after tattoos or piercings. Eight tattoo artists said it was a painless procedure or avoided answering questions.

“The association stressed that “people suffering skin diseases like psoriasis, or who have allergies to paint, metal needles or nickel earrings should not have any type of body art”, and said that tattoos should be completely off limits to anyone who suffers from epilepsy or haemophilia.”

Completely off limits? Why? DECO needs to get up-to-date with hemophilia. I would recommend a prophylactic dose, but can’t imagine why anyone who has hemophilia could not get a tattoo.

DECO has demanded that a law is passed to protect consumers’ rights. I guess this might mean they would ban tattoos from those with hemophilia?

Hemophilia is still seen as an ancient and mysterious disease to most people. Tattoos are commonplace, and probably among our community, too. What would DECO say about Danny, who sports the most interesting of all tattoos for those with hemophilia? This tattoo might actually save his life one day!

Great Book I Just Read
The Devil and Miss Prym
Paulo Coelho

Are humans inherently good or evil? A mysterious man arrives in a remote, clannish and disintegrating town with a proposition. He will leave ten gold bars, worth millions, to the townspeople if they will simply kill one of their own. A former arms dealer, the stranger struggles with demons from the past and a personal tragedy. The town struggles also with a unique past and no future. While the town argues, withdraws, is afraid, one young woman decides to play the game, to beat the man she feels is the devil. Brazilian Coelho is one of the world’s most popular writers and presents stories that are simple to read, but profound in meaning. Three stars.

Pulse on the Road in Washington!

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.

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