Hemophilia Archives - Arizona Hemophilia Association

Affordable Care Act Update

New Report Shows Real Benefits of the Affordable Care Act for the People of Arizona On July, 31 of 2013 the Obama Administration issued a new report highlighting the benefits of the Affordable Care Act for the people of Arizona. Thanks to the health care law, the 82% of Arizonanswho have insurance have more choices and stronger coverage than ever before. And for the 18%of Arizonans who don’t have insurance, or Arizona families and small businesses who buy their coverage but aren’t happy with it, a new day is just around the corner. “Soon, the Health Insurance Marketplace will provide families and small businesses who currently don’t have insurance, or are looking for a better deal, a new way to find health coverage that fits their needs and their budgets,” said Health and Human Services Secretary Kathleen Sebelius. Open enrollment in the Marketplace starts Oct 1, with coverage starting as soon as Jan 1, 2014. But Arizonafamilies and small business can visit HealthCare.gov right now to find the information they need prepare for open enrollment. The health care law is already providing better options, better value, better health and a stronger Medicare program to the people of Arizona by: Better Options The Health Insurance Marketplace Beginning Oct 1, the Health Insurance Marketplace will make it easy for Arizonansto compare qualified health plans, get answers to questions, find out if they are eligible for lower costs for private insurance or health programs like Medicaid and the Children’s Health Insurance Program (CHIP), and enroll in health coverage. By the Numbers: Uninsured Arizonans who are eligible for coverage through the Marketplace. · 947,878 (18%) are uninsured and eligible · 695,083 (73%) have a

Another Banner Year

PEN 05.13 A Project Share Story Zoraida Rosado Project SHARE had another banner year providing blood-clotting medicine to developing countries. In 2012 we donated 5.6 million IU of factor, valued at $5.6 million, to 34 countries. Through these donations, we were able to provide relief to hundreds of people with bleeding disorders. We also donated NovoSeven, valued at $427,000, to 6 countries. In a major contrast with past years, most of our donations in 2012 went to Latin America and the Caribbean. SHARE visited Zimbabwe in December—our fourth trip there. Laurie Kelley also visited Zambia, making the first official visit by a hemophilia program there. She met with a newly formed hemophilia organization and submitted an assessment report to the World Federation of Hemophilia (WFH). SHARE provided $1,000 in funds to help the Haemophilia Foundation of Zambia (HFZ) create business cards and letterhead stationery. Our deepest thanks go to all who have donated factor to Project SHARE, especially those who donated in memory of a loved one. Project SHARE is also grateful for the continued financial support of our corporate partners in 2012: • ASD Healthcare • Baxter Healthcare Corporation • CSL Behring • New England BioLabs • Novo Nordisk Inc. • Octapharma

Using Apps When You Have an Inhibitor

PEN 05.13 Inhibitor Insights Jo Schaffel If you live with inhibitors, you know how complicated life can be. You or your child may be on several different medications and have a demanding treatment regimen. You may have several appointments a week at your hemophilia treatment center (HTC). On top of that, you have all the other responsibilities of parenthood. The mobile apps profiled in this issue of PEN are designed to help organize your life and make it easier to track doctor appointments, treatments, bleeds, and medications. How well do they work if someone in your family has an inhibitor? Benefits of Mobile Apps For years, many parents, caregivers, and patients have tracked factor usage and bleeds on computer spreadsheets or with pencil in a paper logbook. These methods work well for many people, but they have limitations. Mobile apps are a more convenient method for keeping track of bleed data. These software applications are designed to run on smartphones, tablet computers, and other mobile devices. The benefits? Tech-savvy teens and young adults (who often seem to be attached to their cell phones) might prefer to use apps to track their info rather than fill out an entry in a logbook or use a computer. Plus, data on bleeds stored electronically is easier to transmit to a doctor quickly in an emergency. Some health insurance companies require detailed information about infusions: time, date, brand, lot number, bleed type, and dosage. A mobile app can help you keep track of all this info and make it easier to share with caregivers. And if you’re away from home, it’s easier to enter or scan product data and bleed info into a mobile app than

Welcome our New Development Coordinator

Nicole Wheeler Nicole has worked in numerous non-profits including American Cancer Society, Lymphoma Research Foundation and the Wellness Community. Her non-profit experience focuses in donor cultivation and fundraising events such as Walks, Golf Tournaments, Galas, Fashion Shows, Car Shows, and more. A native to Arizona, Nicole has a passion for building relationships with people in our community and raising funds to support those in need. Nicole recently bought her first home! She spends a majority of her spare time remodeling it with her 9-year-old son, Dylan. Nicole and Dylan love do-it-yourself projects and a good challenge! Nicole also enjoys playing kickball in a competitive adult league, hiking and country swing dancing any chance she gets. When she’s not working or spending time on her house, she plans 10, 20 and 30 year high school reunions in the valley, which is typically quite entertaining!Nicole looks forward to utilizing her experience to help the organization grow its current events and hopefully add more that will increase our fundraising opportunities as well as continue to develop relationships within the community!

Legislative Day 2013

Tyler Pulleys Experience I went to the Lunch on the Lawn to meet with some legislators to help educate them on bleeding disorders. We also wanted to see if they were in support of the Governors expansion of Medicad. My mom and I met with 3 representatives. One was with Rep. Larkin. He was very interested in my factor and how much it costs every month. All of the Representatives were very surprised at how much factor costs. We invited them all to lunch on the Senate Lawn where we had mexican food and a mini Salsa Challenge. It is important for us to go to Lunch on the Lawn every year so our legislators remember us and can help us with issues we might have. And my dad had the best salsa for the 2nd year in a row!!! Tyler Pulley- 12

Legislative Day 2013

Vickie Parra's Experience Alyssa and I were hesitant, to say the least, to attend the Legislative Days Lunch on the Lawn. This was our first time attending and really didn't know what to expect. It was quite intimidating thinking about sitting down with Senators and Legislators, especially when you are not very political! We arrived early and attended a meeting so that we would have some idea of what to expect. That meeting was a breeze, raised my confidence and off we went to our meetings. Only to have both meetings cancelled, I was disappointed but not for long! While having lunch on the lawn, the Senator and Representative from our district sat with us and we were able to discuss the Medicaid Expansion. We were invited into the Senate Session, were introduced and had a very pleasant experience. We look forward to attending again next year! As intimidating as it may sound, it is a fun/informative experience, and there are plenty of people around that are willing to help you.

Washington Days Reflections

Diane Lee's Experience (from left to right, Josh Schmidt, Yleana Hughes, Jessica klass, Sarah Fey, Jim Durr, and Diane Lee) March 13, 2013It was an honor to be selected to attend the National Hemophilia Foundation’s Washington Days on behalf of the Arizona Hemophilia Association this year. The trip is a chance to really feel part of our democratic system of government while participating in a process advocating for our bleeding community. This year the NHF had over 300 members attend to meet with the congressional leaders from all around the United States. This was the largest turn-out for Washington Days they have ever had. From Arizona, we were able to send a team of six and were able to meet with many of the Representative offices and Senatorial staff from Arizona. Our primary focus this year was to lobby for support of HR 460, The Patients’ Access to Treatment Act which would set regulations on insurance companies preventing them from creating a Tier IV prescription drug list in which they could charge a co-insurance of ten to thirty percent. As you can imagine, this amount of co-insurance would make much of our factor and medications cost prohibitive to us even with insurance. We also told our personal stories of how the local Hemophilia Treatment Centers (HTC)have benefited our families and requested that any cuts that may be made to budgets either spare or at least be fairly distributed across agencies. The Center for Disease Control (CDC) and the Maternal and Child Health Bureau (MCHB) are agencies that fund and support our Hemophilia Treatment Centers and they have suffered deep cuts already. We do not want any further cuts. I was impressed at how receptive

Joshua Schmidt – Meet Arizona’s Newest Blood Brotherhood Member

Hi, I am Joshua Schmidt. I am a Hemophiliac in Phoenix. I want to help you make your life better. Having Hemophilia can be many different things for many people. Some of us don’t have to worry about much because we have good coverage and bleeds are not much of an issue. While some of us are still struggling to get the needs we have met, and sometimes you just can’t do it on your own. Whatever your situation with Hemophilia is, there is a great way to to build the quality of your own life and that is Blood Brotherhood! When I moved to Arizona in 2010, I was in bad shape. My ankles were about to fuse themselves together before the doctor could. My wrists and forearms still need attention that I can’t give them until I get my legs are taken care of. Life was hard and the last thing I wanted was to deal with was more Hemophilia, or anything related to it. I did not want to think about doctor visits, shots, or stretching. I was also very alone. I had my wonderful family to help get me through it all, but they still don’t understand what I really go through. Nobody does but us. Sometimes we want to be left alone because we don’t want others to see us when we are down, yet we want somebody to help us through the pain we are experiencing. Last spring was an eye opening experience for me. I was going out of town and needed some shots. I called to place my order and was told I could not because some laws were changing. I went to instant panic mode.

Insight into the Benefits of Online Communitcation

From the Hemophilia Federation of America:Adult men living with hemophilia often suffer from joint damage, arthritis, and depression from their frequent health problems. Blood Brotherhood is a national program for adult men living with a bleeding disorder that provides education, support, and establishes a sense of community. Watch this video to find out more about the program and how to get involved. Blood Brothers from Hemophilia Federation of America on Vimeo.

I’m Just As Normal As You

A reflection piece written by Jeff Johnson that we wanted to share:I'd like to approach a subject here that's been present in our community for quite some time and unfortunately isn't always dealt with as openly and honestly as it could be. I'll warn everyone now that this is challenging, both of and for, parents. Not in a negative way but in a healthy, self examining way. Still, one should probably not proceed unless one is prepared for reflection, self examination and even, perhaps, the rejection of deeply held beliefs and feelings.The subject I'd like to discuss is the attitude that having hemophilia makes one less than normal and warrants feelings of guilt or regret in a parent or should be viewed as "bad news" and cause for mourning or distress. Now, I'm pragmatic enough to admit that yes, hemophilia is a whole different level of lame and I'm not demeaning my own condition. Bleeds suck, especially when they prevent an activity or life choice from playing out as we would have preferred. And it is expensive, of course, and time consuming. Yes, it has numerous challenges. But at the same time it is important to maintain perspective. There are countless conditions worse than hemophilia and in the grand scheme of things being born a hemo is far better than being born with MS or cancer or sickle cell anemia or so on. While a challenge, hemophilia isn't any longer a death sentence or even condemnation to a life that is less than normal. Our factor today is amazing, as is our care. Compared to previous generations and the trials they experienced, today hemophilia is barely even a disorder, which is why I often joke