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 Gonzalez, 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 differently.
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!
Please check www.kelleycom.com by December to see where we will be in 2015!
Good Book I Just Read
Metallica: Justice for All [Kindle]
Metallica 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.