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8-29-2013   This summer I was invited to Camp Independent Firefly in Big Bear, California.  The Nevada Hemophilia Chapter has partnered with Candlelighters Childhood Cancer Foundation of Nevada to provide children with the best summer camp experience possible.  There were approximately 300 campers and staff in attendance with a host of Camp activities including Horseback riding, petting zoo, mountain biking, banana boat rides, daily water wars, and the coveted GaGa. The experience brought back memories of Camp HONOR and how awesome our camp community is.  I really appreciate the opportunity to spend time with childhood cancer survivors and hemophiliacs alike while listening to their stories, struggles, and achievements. It was truly an amazing experience!

      Carmella (Millie) Dillman, our new Resource Coordinator, will use her experience from working in case management services and the skills she acquired while studying for a Master’s in Library Science to seek out great partnerships and resources for the community.   With a background in nonprofit programming including Volunteers of America and Americorps, Millie has had experience working with community organizations and understands the value of the collaborative effort it takes to provide the best possible service to the community.  In her spare time, Millie enjoys making jewelry (she has a shop on Etsy), reading, writing, and spending time with her husband and 2 and a half year old daughter.  Millie is originally from Pennsylvania, but is thrilled to have relocated to the Phoenix area with her family after her husband was assigned a Health Professionals Recruiter position in the Air Force.    After her first week of working with the AHA, Millie participated in this year's successful My Nana's Salsa Challenge.  Using the trial by fire method, Millie has caught the contagious passion each member of the staff has for the organization. Seeing the incredible relationship the members of the community have with the organization and the strong bond the staff has with each other, Millie feels extremely grateful to have become part of the team.

A clinical trial last month showed that a once daily, all-oral drug combination to treat chronic hepatitis C infection (HCV)--Bristol-Myers Squibb’s daclatasvir (NS5A replication complex inhibitor) and Gilead’s sofosbuvir (nucleotide NS5B inhibitor), direct-acting viral agents--was effective in all patients. It tested that drug combination with and without ribavirin, and excluded interferon, which is notorious for causing debilitating side effects. Results of the trial were presented by Mark Sulkowski, MD, professor of medicine at Johns Hopkins University during the 48th Annual Meeting of the European Association for the Study of the Liver (International Liver Congress 2013), April 24-28, 2013, in Amsterdam, The Netherlands.    All 41 study subjects had genotype 1 chronic HCV. More than 80% had subtype 1a, which is difficult to treat. They represented HCV patients who did not respond previously to interferon-based triple therapy using pegylated interferon and ribavirin, with an approved HCV protease inhibitor, either boceprevir (Victrelis) or telaprevir (Incivek). Twelve weeks after the treatment ended, the rates of sustained viral response (SVR) were 100% in the sofosbuvir/daclatasvir arm and 95% in the sofosbuvir/daclatasvir/ribavirin arm. SVR indicates that a patient has “cleared” the virus for at least six months after completing therapy. It is achieved when viral levels drop to nearly undetectable levels. Of the 21 patients who completed 24 weeks of follow-up once treatment ended, all had undetectable virus, or 100% SVR in both arms. Researchers reported that the drugs were well tolerated and there were few side effects. “These data provide proof-of-concept that the combination of two potent direct-acting antivirals with different viral targets is effective in patients who failed [pegylated interferon/ribavirin] plus a protease inhibitor,” concluded Sulkowski. “We can tell our patients who failed triple therapy they now appear

The World Federation of Hemophilia’s (WFH) Guidelines for the Management of Hemophilia were recently accepted by the National Guideline Clearinghouse (NGC), a public resource geared toward evidence-based clinical practice. NGC’s mission is to provide physicians and other health professionals, healthcare providers, health plans, integrated delivery systems, purchasers and others an accessible mechanism for obtaining objective, detailed information on clinical practice guidelines and to further their dissemination, implementation and use. The objectives of the guidelines, revised in 2012, are to:   ·        Offer practical recommendations on the diagnosis and general management of hemophilia, as well as the prevention and management of complications including musculoskeletal issues, inhibitors and transfusion-transmitted infections and ·        Assist healthcare providers seeking to initiate and/or maintain hemophilia care programs, encourage practice harmonization around the world and, where recommendations lack adequate evidence, stimulate appropriate studies.   NGC is an initiative of the US Department of Health and Human Services’ Agency for Healthcare Research and Quality (AHRQ). It was created by AHRQ in partnership with the American Medical Association and the American Association of Health Plans, now America’s Health Insurance Plans. The WFH guidelines are available for free download on the NGC Web site at www.guideline.gov.  

Background Information Proposition 204   ·         In 1998, the attorneys general of 46 states, including Arizona, agreed to settle a lawsuit they had filed against the manufacturers of tobacco products. As a result, the tobacco manufacturers must pay each of those states a portion of the estimated $206 billion settlement each year over the next 25 years. ·         Arizona's share is estimated to total approximately $3.2 billion. Payments are subject to annual adjustments for inflation. The settlement also includes a provision to reduce payments if the volume of cigarettes sold in the United States falls. The settlement agreement allows each state to determine how it will spend its share of the settlement. ·         Proposition 204, approved by voters in the November 2000 election, required Arizona to deposit all of the money it receives over the next 25 years from the tobacco litigation settlement in the "Arizona Tobacco Litigation settlement fund." Money in the fund would be used to increase the number of people who are eligible for coverage in the Arizona Health Care Cost Containment System (AHCCCS). ·         Approved by voters in the November 2000 election, Proposition 204 expanded eligibility for AHCCCS for persons who are uninsured and have annual incomes less than 100% of the federal Poverty Level (FPL). The provision also included, “as long as funds are available”.   ·         With the budget deficit, in January, 2011 the State House and Senate approved a bill authorizing Gov. Jan Brewer to ask the federal government for permission to drop 280,000 adult patients from the state’s Medicaid program. ·         On March 15, 2011 Governor Brewer introduced a new reform plan that eliminates Medicaid coverage for childless adults, grandfathering-in only existing enrollees. With attrition, the provision

STATUS OF MEDICAID EXPANSION   Background *On January 14, Arizona Governor Jan Brewer announced a proposal to expand Arizona’s Medicaid program, typically known as Arizona Health Care Cost Containment System (AHCCCS).  The Arizona Hemophilia Association strongly supports the Governor’s proposal to provide health care services to thousands of low-income, uninsured adults throughout the state.  This is particularly important to childless adults, who are represented by  young adults with bleeding disorders who cannot afford the expensive premiums because of this high cost of treatment. *Affordable Care Act mandated that Medicaid would be expanded to 133% Federal Poverty Level (FPL) for all citizens. The state would receive:  - 100% federal match for expanding coverage for parents and childless adults from 100% - 133%FPL      - 85% federal match (growing to 90%) for restoring eligibility for childless adults below 100% FPL   *The Supreme Court ruled that Medicaid expansion could not be mandated and states could choose. Governor Brewer and several organizations have endorsed the Medicaid Expansion, now being called ‘Medicaid Restoration’ because it would essentially provide coverage to the childless adults that have been frozen out.   *There are mandated provisions with the Affordable Care Act that must be implemented whether or not Arizona expands. These include coverage for children and *In order for the expansion to move forward, the Arizona Legislature must approve the Governor’s plan. AHA is part of a coalition to encourage our legislators to support the expansion. She is proposing:             1. Covering adults up to 133% FPL                 - this would only add 57,000 people to the population already covered by proposition 204.             2.  Instituting a Safeguard, called a circuit breaker, that discontinues the expansion if the federal match goes below

Jess Sorenson Working for the corporate world prior to finding AHA, Jess brings experience in marketing and administration and is enthusiastic about using that knowledge in the non-profit world. She hopes to work on AHA’s social media to help increase general awareness of our community. Jess earned her undergraduate degree in English, emphasis in Professional and Technical Writing, with a minor in Political Science from Utah State University. Growing up in a small town in South Dakota, Jess enjoys hiking the “mountains” here in the desert as well as “sweating it out” in hot yoga. Having lived in Arizona for less than 2 years, Jess has learned to enjoy the extra months of outdoor activities, while trying to adjust to the hot summer months. More importantly, Jess enjoys spending time with her family here in Arizona. Whether it’s playing sports with her brothers or taking her sister to plays, Jess cherishes the moments she gets to spend with her younger siblings. Volunteering for a non-profit during college, Jess quickly recognized how much fondness she gained for the people she worked for. “Working for a cause and for people you care about, doesn’t feel like work, it feels like doing things for people you call friends and family.” When interviewing for the position at AHA, Jess caught sight of the passion the AHA team had for the community and was thrilled at the thought of working for such a wonderful team. Jess hopes to do her part in making a difference for the AHA community as well as benefit from being a part of your lives.

 Teri Morrison     In her new role as Assistant Executive Director, Teri Morrison brings 25 plus years of management experience to the Arizona Hemophilia Association.  From a Global Travel Company, to a Corporate Communication and Events Company, Teri has honed her business acumen and interpersonal skills to dovetail into the non-profit arena.  She earned her undergraduate degree in Sociology from Arizona State University and her Masters in Organizational Management from the University of Phoenix. Although she is originally from Utah, after over 40 years in Arizona, Teri considers herself “almost” a native.  She is passionate about spending time with her 4 boys (James 29, Charles 27, Keane 18 and Kai 9).    Some of her other interests include running, cooking and watching basketball games.As a volunteer for AHA, Teri experienced firsthand what a wonderful organization the Arizona Hemophilia Association is.   When the position became available, she didn’t hesitate to join that wonderful collection of incredible and diverse individuals.  Teri feels that she has found a home with the AHA and is excited and looking forward to getting to know, and learning more about the people and the needs of the community she serves.  Teri is extremely appreciative of the opportunity to be a part of an association that has such commitment and dedication to a worthwhile cause, and encourages all community members to become involved.   

A Day of Golf, Friends, and New Experiences! by Chris Briere   November 16th was one of the most fun days. The whole day was about hanging out with friends, talking, joking, playing golf, and having a good time. It was a new and great experience for me. Playing golf is more than a game and experience, it’s a way of life to enjoy friends and joke around. I’ve also leaned golf can bring together businesses and partnerships. It also helps you to think really hard with geometry in order to know directions in which to carefully hit the ball. It’s quite an eye-opener. Since I’ve not had a driver’s license, I learned to drive a golf-cart and that was fun (there were no causalities or crashes) and I drove very well for my first time. My buddy Josh let me drive, thank you, dude. After the golf event, I continued to play gold and I really like this game. Someday, not only would I like to have my own home built but have my own golf course included. I want to thank Gus for getting me into golf and teaching me as well as the AHA for making this possible for everyone.