AHA Archives - Arizona Hemophilia Association

Josh Traulsen, our new program director

Josh was born and raised in Phoenix, Arizona and has worked for non profits most of his life. As a child Josh’s parents, Jennifer and Richard Traulsen were very active in the camping community and spent years working at Camp Honor each summer, bringing Josh along to learn the ropes. Beginning in 2003, Josh spent 3 weeks each summer working with Camp Swift, a program dedicated to bringing underprivileged youth to camp, as a counselor and eventually unit head. Josh graduated Arizona State University with a degree in Non Profit Management and Leadership and a Certificate in Special Events Management and Urban Planning. While at ASU, Josh volunteered as the Volunteer Coordinator for the My Nana’s Best Tasting Salsa Challenge. For the past year Josh was with the East Valley Jewish Community Center as their Director of Children Youth and Camping but is happy to be a part of the AHA Team as the new Program Director! In his free time, Josh likes to rock climb, hike, bike, play guitar, and cook. He is a certified lifeguard and canoeing, archery, and climbing instructor and is hoping to bring some of his skills to new camp programs. He is looking forward to meeting all the members of our community as he plans events for all of our social programs and prepares for Camp Honor.

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

Welcome Brent, Our New Community Advocate

Meet Brent Davila, the newest member to join our team at the AHA. Brent Davila grew up as a camper going to Camp HONOR, and was later a counselor for several years. Brent feels lucky enough to be working to help provide other members of our community with the same wonderful opportunities that he has had. At the AHA, Brent will be focusing his energy on our outreach and advocacy programs. Brent’s goal is to facilitate opportunities that would allow members of the bleeding disorder community to advocate for themselves. Few can understand and explain the challenges that those with bleeding disorders and their families face better than the very people living with these challenges every day. This is why Brent believes the Speaker’s Bureau is such a valuable tool. It gives individuals from our community with a vested interest in the well-being of families with bleeding disorders, a chance to let their voice be heard, and a chance to have a say in the matters that are important to us all. Moving into the future, Brent believes it would benefit the community at large to have an actively involved group of individuals that are comfortable with advocating on their own behalf, and on behalf of people with bleeding disorders everywhere. Brent hopes to help make this a reality. Brent believes that our community has shown that we can accomplish incredible things when we all work together. If you are interested in becoming a part of the Speakers Bureau, please contact Brent at the Arizona Hemophilia Association at 602-955-3947

George Coppock, Our New Team Mentor

George Dickson Coppock IV was born in Cave Creek, a small town just north of Phoenix, AZ. Most of his younger years were spent on his parents’ 7 acre farm on Cave Creek causing trouble with his 3 younger siblings. In 1986, his father opened a small family operated construction company, "Cave Creek Adobe" where George and his younger brothers would work during the amazing Arizona summers. George’s father believed in providing future generations with an affordable alternative for building an energy efficient home. George attended the local Cave Creek public schools until his 5th grade year, when his mother decided to home school the family. For the next 2 years, schooling was followed by working in the "Adobe Yard" as it was called. Upon completing his 8th grade entrance examination, George enrolled at Foothills Academy, a college prep school in the Cave Creek district. He attended Foothills Academy until his junior year when he switched to Cactus Shadows High School. Graduating in 2001, George looked forward to a career in the family business but wanted to further his education. He enrolled in PVCC a local Community College to pursue a career in engineering but soon found his passion in serving and helping others. In the summer of 2001, George attended Camp HONOR for the first time and it was truly a life changing experience for him. In the years to come, George would bounce around from job to job, from providing turn down service at the Four Seasons, to custom machine fabrication for off road trucks, until finding his home at the Hemophilia Association. George really looks forward to serving the Hemophilia community in the future for many years to come.

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

Cindy: Healthcare Reform Update

Healthcare Reform Update As you may know, the Supreme Court ruled that the Affordable Care Act (aka Obamacare) was constitutional. What that means is that the government can require that individuals have health insurance. However, the Supreme Court also ruled that the states do not have to expand Medicaid from 100% federal poverty level (FPL) to 133% (FPL) as was required in the Affordable Care Act (ACA). Why does all of this matter to you? The ACA has certain requirements for the states. Arizona has to decide: I. What the Essential Health Benefits benchmark plan will be and report to the federal government by September 30th. Governor Brewer chose the State Employee Benefit-United Healthcare EPO with pediatric dental and vision coverage supplemental by the FED-VIP plan as the benchmark plan. It will be important to understand what is included in this plan regarding pharmacy benefits, factor product choices, etc. The plan is about 80 pages long. We are currently assessing it and will make sure to make our voices heard on any concerns for our community. II. Whether Arizona will operate its own Health Insurance Exchange or opt to have the federal government run it. The exchanges are designed to help small businesses provide coverage for their employees and for individuals who are not insured through their employer. On November 28, 2012, Governor Brewer notified the feds that Arizona will not create a state-run health insurance exchange. Arizona is one of 17 other states that have rejected a state-run exchange. The federal government has the authority to step in and create exchanges in states that do not build their own. III. Whether to expand Medicaid from 100% FPL to 133% FPL. Children are automatically increased

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.