Check the Pulse in Illinois!

L to R: Zoraida, Michelle, Laurie, Kelly, Elizabeth
Chicago, Illinois was the location of
our first Pulse on the Road in 2015. The
Bleeding Disorders Alliance Illinois
was our gracious host for this
day-long event, attended by 70 families.
Laurie with Audrey Taylor, 2002
It was a joyous day to be alive and together
after two tragedies had just struck: Illinois suffered about 14 tornadoes the
day before, which leveled the town of Fairdale, causing two deaths. The
community also lost the beloved Audrey Taylor, a sassy and compassionate nurse
at Rush University Hospital, one of the main hemophilia treatment centers.
Audrey was a great colleague who I always loved seeing and her death at age 51
is just devastating for all.
Our guest speakers included: the
fabulous Michelle Rice, vice president, Public Policy and Stakeholder
Relations, National Hemophilia Foundation; Kelly
, a Nevada woman with von Willebrand disease, teacher, and now
advocate; Elizabeth Stoltz, senior manager, Market Access, Baxter Healthcare; and Laurie Kelley, yours truly!
Mona and Bob of BDAI, with Laurie Kelley
Executive director Bob Robinson welcome
everyone and introduced POTR, and me. I presented “Where We Were, Where We Are
and How We Got Here” to explain why the Affordable Care Act (ACA) come into
being, and how hemophilia fits in. With a few stats, I showed that skyrocketing
medical costs, particularly in specialty drugs (which factor is), was straining
state budgets; it was only a matter of time before private insurers caught on.
Looking to cut costs, insurers turned to increasing prior authorizations,
formularies, decreasing choice of factor provider, and more. As payers scramble
to cut costs and states try to cut their bloated budgets, the bleeding
disorders community is facing more and more restriction to access to medical
care and factor.
Michelle Rice, VP at NHF
Laurie and Zoraida with the DePaz Family
Enter Michelle, who explained in much greater depth how
this was happening, and gave great examples of where this was happening in our
country. After lunch, Kelly gave a lively and impassioned chronology how she became an advocate, to get access to medical care and the right factor brand for her
daughter Jacey, who accompanied her to this meeting. It was an incredible story that took 30
minutes, and left the audience in tears! But Kelly triumphed, and became a role
model for other parents fighting for access to care for their families.
Genny Moore earned $20 with our Q&A!
We tried
something new! Role playing! With Michelle acting as an insurance rep, we had
two volunteers come to the stage and act as patients, calling their insurer to
find out about 1) whether factor was covered, and 2) if their HTC was covered
under the plan. Theresa and Chrystal did a great job asking questions and not
accepting Michelle’s runaround answers. The audience got to weigh in an offer
what they thought the ladies did well and what they might have done
Finally, Community Forum, where our panel of experts field questions from the audience
on any subject, from their personal healthcare situation to state issues to
national affairs in insurance. We had some great questions and responses.
Thanks Zoraida Rosado, who planned our
trip so well, set up displays, tables and handouts, and dissembled everything;
to Michelle and Kelly for sharing their expertise and their weekend; and to Bob
and his BDAI team, to the Spanish translators, and to Baxter Healthcare, for providing the funding for all
the Pulse on the Roads, now in our 7th year!
check by December to see where we will be in 2015!
Book I Just Read
Justice for All
is one of the best selling bands in history, and is often said to have defined “thrash”
metal. This is a look at their origins, spectacular rise, wayward path, and an in-depth look
at every song and every album. Probably a book for fans only, and not the best
book on rock I’ve ever read. The book gets terribly bogged down in detail, as
though it’s a ledger, schedule or chronology. Is it essential to know every city the band visited on every single tour? (It’s exhausting to
read! How did they travel so much and so often?) Much of the information is
gleaned from interviews appearing in magazines, and then pulled together to
weave some kind of story. There are layers of information missing, such as the
drug and alcohol binges throughout the band’s career, which McIver seems to
gloss over. Incredible detail on every song, how it compares to others in each album, with
McIver voicing his opinion on each song. Some of this is interesting, but you
lose the focus of the book and get sidetracked. I’m a huge fan of Metallica,
but found this book a bit tough to get through. Choppy writing, too much detail
here, not enough there. Three/five stars.

Meet You in St. Louie?

Many of you might know we have more than one national hemophilia organization. Most people around the world know National Hemophilia Foundation (NHF), which has been around for 60+ years.  But we also have Hemophilia Federation of America (HFA), founded during a crisis time, when at the grassroots level part of our community felt their needs were not being met. From a small group of interested consumers, it has grown to become a national grassroots organization with advocacy at its heart. I like its messaging and style: simple, direct, and proactive.
Since its founding, it has held annual meetings, well timed to occur opposite in the calendar to NHF’s meetings. The next one is in St. Louis March 26-28.
The meetings are much smaller than that of NHF, and so actually gives you a chance to mingle and meet so many people in a less formal atmosphere. I haven’t been to many, as I am usually traveling to Africa or Asia at that time (while the weather is cooler there!) but the symposia I have attended have always been causal, informative, and fun.
Try to go if you can! And check out HFA’s many programs and offerings. It has an excellent website!
For info:

Great Book I Just Read

To Live is to Die: The Life and Death of Metallica’s Cliff Burton [Kindle]

Joel McIver
The incredible and mesmerizing story of a bass guitar legend who helped establish one of the first “thrash” heavy metal bands, Metallica. Cliff Burton was only 24 when he died in a tour bus crash in Sweden, when Metallica was just becoming famous. Burton was dedicated to bass guitar from an early age, mastered it like no other and experimented with it on stage in a way no other had done (listen to his lead in on “Anesthesia”). He was in many ways the soul of the band. With his jean jacket and bell-bottom denims, he didn’t fit the mold of thrash metal,  staying true to who he was at heart: a quiet, intense and musically talented young man. He brought Bach into heavy metal, helping to give Metallica its unique sound. His death left a permanent scar on the band. This is a well written, in-depth account of Burton, almost a memorial to a man who would have risen to great musical heights, but whose work is preserved forever in albums like “Kill ’em All” and the incomparable “Master of Puppets.” Four/five stars.

Hospital Advocacy 101–A Refresher Couse

Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. —Helen Keller
Helen Keller’s quotation could be a the tagline for Advocacy 101, a class I feel I attended this weekend. I received a text Friday morning from my brother Tim, telling me our 82-year-old mother had been admitted to the hospital in the early morning hours. Apparently she had fallen in the night and couldn’t get up–yes, just like the commercial says.
When I finally arrived in Springfield, I went straight to the hospital observation ward. My mother was very ill, that was clear. The doctors were running tests on her to rule out arterial blockage, stroke or neurological issues. Her main symptom was extreme vertigo, as she had no balance at all, which left her exhausted and nauseated, and shaking. She had not been able to eat all day. Fortunately, when I left her three hours later for the evening, she was perking up and looking and feeling better. The doctors were very helpful, and explained everything they could, in the best way they could. The nursing staff was excellent and we felt she was getting top-notch care.
As I left, I realized I had not been in a hospital, in a medical situation, in a very long time, probably more than four years ago, when my son was last admitted with me around (appendicitis). My advocacy skills were a bit rusty.
Well, the great care she received Friday was from the day staff. The next day I returned with my sister-in-law Lee, and my mother looked like she was suffering, having had an ordeal through the night, including a 3 am MRI. She was curled up on one side, unable to lift her head, nauseated to the extreme. She had not had anything to eat or drink in forever. She said the noise from the admin desk (just a few feet away) from the “girls” at the desk was loud, obnoxious, keeping her tense and unable to rest. She rang and rang the call button, but no one came to assist her. She listed all her frustrations.
Lee poked her head out of the curtain that barely screened her from the rest of the ward and ordered, “She needs a room, now. She is very uncomfortable.” And this lead to, when are we getting the room? Do you know, within 15 minutes they had a room for her. They gave her a pill for nausea, changed her, wheeled her upstairs and brought her delicious broth to drink. My mom felt better within 30 minutes. She sat up and ate the soup.
Lee also discovered that the nurse did not have it noted on her charts that my mother is diabetic: staff should really not be giving her muffins with high glucose content! Noted. And her diet was changed.
I was proud of my sister-in-law for being there, and for so immediately requesting an improvement. That’s true advocacy in action. It was a reminder of everything I learned 27 years ago when my son with hemophilia was born: how to politely make my medical rights known, to make my needs known, to speak up for a baby who cannot speak for himself. And not to back down when you know you are right. These skills weakened over time when not used; I was slower to advocate for my mother than my sister-in-law was!
I just learned that she has been discharged; so we will arrange to have her brought home, just in time for Christmas. And from where did I first learn medical advocacy? It wasn’t really hemophilia; it was from mom of course. As one of seven children, I watched her handle hospitals and doctors many times with my active brothers. And I saw her get action when she spoke up. The nurse mentioned to me that my mother is refusing a script for a walker, which we all wanted her to have. That’s advocacy and pride. That’s my mom, my first advocacy teacher.
Interesting Book I Just Read
Metallica This Monster Lives: The Inside Story of Some Kind of Monster [Kindle]
Joe Berlinger and Greg MilnerA story about the making of a documentary of one of the most successful metal bands, which was going through a crisis that threatened to destroy itself. In 2001 Metallica was reeling from losing its bass player, yet had to produce a new album, its first in years. The film team that produced two excellent documentaries, Brother’s Keeper and Paradise Lost (and the widely panned Blair Witch Project 2), now documented the band composing, fighting and enduring therapy with a performance coach. 1600 hours of footage turned into a feature documentary, and entered the Sundance Festival. But the book–an oddity. More about the filmaker and his career. Berlinger is too close to his subjects to be objective, and at times, revels giddily in his chumminess with Lars, the drummer. But I enjoyed it, even if it is an unevenly told story; Berlinger comes across as a very nice person, sincerely trying to do his best as the game plan keeps changing radically. Lars does not come across well. Fans may cringe at hearing these thrash metal superstars bare their feelings towards each other. A great book for psychotherapists or filmakers in training. The Kindle version is riff with missing periods at the end of sentences. Two/five stars.

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