HemophiliAction - Hemophilia Foundation of Southern California
Transcripción
HemophiliAction - Hemophilia Foundation of Southern California
HemophiliAction A publication of the Hemophilia Foundation of Southern California Volume 8 • Issue 4 • Summer 2013 summer A life without love is like a year without summer. -- Swedish Proverb. We worry about what a child will become tomorrow, yet we forget that he is someone today. - Stacia Tauscher Hemophilia Foundation of Southern California 6720 Melrose Avenue Hollywood,CA 90038 Tel: 323-525-0440 Fax: 323-525-0445 [email protected] www.hemosocal.org HemophiliAction HemophiliAction is published quarterly by: The Hemophilia Foundation of Southern California DISCLAIMERS The Hemophilia Foundation of Southern California (HFSC) does not endorse any particular pharmaceutical manufacturer or home care company. PLEASE NOTE: The companies whose advertisements are listed herein have purchased this space, and are NEVER provided with members’ names, addresses or any other personal details. Paid advertisements should not be interpreted as a recommendation from HFSC, nor do we accept responsibility for the accuracy of any claims made by paid advertisements. Since we do not engage in the practice of medicine, we always recommend that you consult a physician before pursuing any course of treatment.Information and opinions expressed in this publication are not necessarily those of the HFSC, or of its editorial staff. Material printed in this publication may be reprinted with express prior written permission from the Executive Director. Executively Speaking Enjoy the Moment “Each day comes bearing its own gifts. Untie the ribbons.” --Ruth Ann Schabacker Summer swiftly passes and we prepare for fall and before we know it, it will be 2014. The Hemophilia Foundation of Southern California will celebrate our 60 This will be a momentous time to celebrate all of you and the rich history of the hemophilia community in Southern California. Please send me your family photos, articles, for our celebration, as we want to celebrate you and your life stories! Board of Directors Tamara Kato, President Judy Mangione, Secretary Jorge Catedral, Advocacy Chair Michael Franzen, Treasurer Dr. Richard Metz, VP Fundraising Doris Quon, MD, Medical Representative Staff Linda Corrente, Executive Director Charles J Cook, Social Worker Special Thanks Angie Yanez, Spanish Translation Linda Corrente, Editor Mark Elias, Art Director Hemophilia Foundation of Southern California 6720 Melrose Ave. Hollywood, CA 90038 Tel: (323) 525-0440 Toll Free: (in CA only)(800) 371-4123 Fax: (323) 525-0445 E-mail: [email protected] Web: www.hemosocal.org 2 HemophiliAction As we close out this year, there are still a few moments to share together with you. Join us at the National Hemophilia Annual Meeting in Anaheim, Uniting in Progress on Oct 3-6. One of our leaders will be honored at the Awards luncheon on Saturday, Oct 5, 2013. Tickets for the luncheon are twenty dollars. Meet us shore side on October 19 to leave your footprint in the sand at our Hemophilia Beach Walk at Crescent Bay Park in Santa Monica. Register now at hemophilia.org/walk. Our office is happy to assist you in establishing your team page. Pack your sleeping bag and save the date for the Family retreat, December 6-8. It is a rustic setting in Malibu close to the Ventura County line. We have limited space so call now to reserve your bunk bed. Please call and e-mail us at 323-525-0440 or [email protected] with your suggestions and information you would like to share in our newsletter. Warm Regards Linda Corrente Executive Director Hablando Ejécutivamente Disfrute cada momento “Cada día viene con su ofrecimiento de regalos” – Ruth Ann Schabacker Mientras el verano pasa rápidamente y nos preparamos para el otoño, y cuando menos pensemos aquí estará el 2014. La Fundación de Hemofilia del Sur de California celebrara su aniversario 60 en el 2014. Esto será un periodo celebración para todos ustedes y la gran historia de la comunidad de hemofilia del Sur de California. Por favor envíeme fotos de sus familias, artículos, para nuestra celebración, queremos celebrarlos a ustedes y sus historias! Mientras cerramos este año, todavía hay unos momentos para compartir juntos. Únase en la Reunión Anual de Hemofilia en Anaheim, Uniendo en Progreso el Octubre 3-6. Uno de nuestros lideres será honorado en el almuerzo de Honores el sábado Oct 5, 2013. Los tiquetes para este almuerzo son $20. Únase con nosotros al lado de la playa octubre 19 para dejar su paso en la arena en la Caminata de Hemofilia en la Playa Crescent Bay Park in Santa Monica. Regístrese hoy en hemophilia.org/walk. Nuestra oficina le puede ayudar en establecer su grupo. Empaque su maleta para dormir y guarde la fecha para el Retiro familiar, diciembre 6-8. Es unlugar rustico en Malibu, cerca de la línea del Condado de Ventura. Tenemos espacio limitado, llamo hoy a reservar su espacio. Por favor llámenos y envíenos un correo electrónico a 323-525-0440 o [email protected] con sus sugerencia e información que quiera ver en la revista. Sinceramente Linda Corrente Directora Ejecutiva 2013 In Memory & In Honor of Donor Recognition Reconocimiento de Donanes 2013 Donations listed are from –March – July 15th In Memory David Brand Anita Pinsker Mark Castle Evan Borstein Nickolas & Louis Frigone Beverly Frigone Peter Parker Sandy & Andrew Clark Todd Pittman Judith & Wilmer Pittman Mark Leone Summer Camp Fund Edward L. Allum Audio Video Representatives, Inc. Dr. Gina Brown Scott Caswell C F Marketing Greg Davis Tim Hill David Hoag Michael Jordin Edward Kemp Keith Lehmann Patricia Lehmann Aida Leone Catherine Leone Stacy & Ed Meenan Keri & Jim Pari Annette & Michael A. Sajecki Keith Selby Sunbelt Associates Tal, Incorporated Stephen Trentacoste Patricia Wakefield HemophiliAction 3 CHPS Certified! We are pleased to announce the creation of a new program that will benefit all of our members and our community. California Hemophilia Program Support Inc. (CHPS), is a new nonprofit organization designed to recognize top performing home care services to our community. It will vet and certify home care companies who continue to meet performance quality criteria set forth by the Hemophilia Foundation of Southern California (HFSC), and performance standards as defined in the State of California’s new law to protect the hemophilia community. With so many home care companies, HFSC recognizes the task of finding a good home care company can be daunting. Families are already challenged with so much to learn, and most don’t have time to determine what home care companies meet minimum standards or have the expertise to ensure their home care needs are met. This is why HFSC decided to create CHPS, patterned off the successful HPPS program in Pennsylvania. Qualifying home care companies need a good history of serving the community of bleeding disorders; demonstrate a working knowledge of hemophilia and bleeding disorder products and care, offer a full range of services within the community, have inventory in stock to provide service, supply a 24 hour toll free number that will make pharmacists and shipments of medication available so that members can access their medication at any time, and provide for the fact that despite 4 HemophiliAction provided expected costs be expected to inform the consumer of any changes to costs, but make an effort to provide treatment and costs at lowest possible price. They must also fully comply with AB389, Mitchell existing law. The Holden-MosconeGaramendi Genetically Handicapped Person’s Program, requires the Director of Health Care Services to establish and administer a program for the medical care of persons with genetically handicapping conditions, including hemophilia. This bill would impose specified requirements on providers of blood clotting products for home use, as described, whose products are used for the treatment and prevention of symptoms associated with bleeding disorders, including all forms of hemophilia. This bill would require the California State Board of Pharmacy to administer and enforce these provisions. So far, there are four companies to be certified in the CHPS program, Brothers Healthcare, Factor Support Network, BioRx and National Cornerstone. Great changes are coming and the introduction of the CHPS program will help us continue to fulfill our mission to improve the quality of life and build community for families and individuals living with hemophilia or other bleeding disorders. Proud members of the CHPS program, one of the top four Certified Homecare Company’s recognized for our performance and quality standards by the Hemophilia Foundation of Southern California. Factor Support Network is a patient centered, full service specialty pharmacy serving the bleeding disorders community since 1994. We are dedicated to providing comprehensive care and support to persons with hemophilia and other bleeding disorders. Our services include medication therapy management, coordination of care and ancillary supplies. We maintain inventory of all factor therapies and assay choices to minimize delays in your care and promote positive health outcomes. FSN is an in-network provider for GHPP, CCS and Tri-Care. We develop an individual relationship with every client to provide customized services that respond to the complex needs of hemophilia and other serious disorders. Toll Free: 877-376-4968 www.FactorSupport.com Brothers Healthcare is CHPS Certified! As a premier CHPS certified home care company Brothers Healthcare has been recognized for providing exemplary service to the bleeding disorder community. CHPS and Brothers Healthcare are dedicated to ensuring that patients continue to receive the highest quality of care and services at an affordable cost. Brothers Healthcare is an integral part of your healthcare team reaching far beyond the standards of care as defined by the state of California’s new law AB389. We are here 24 hours a day, 365 a year. Hemophilia doesn’t take a break and neither do we. We provide personalized services to match your family’s unique needs. We have reimbursement specialists that track, navigate, and handle all your insurances issues. We coordinate nursing services that come to you, on your schedule. We offer all factor brands with supplies delivered on time to your doorstep. We are community advocates, educators, volunteers, and your child’s mentor. 24 Hour Toll Free: (877) 276-4248 | www.brothershealthcare.com Scott Carthey (714) 337-6789 and Kevin Shaughnessy (909) 855-0711 HemophiliAction 5 We are pleased to be recognized as a top performing service provider to the bleeding disorder community in Southern California. • • • • • • We advocate on behalf of patients We simplify access to product We provide insurance assistance Individual packaging & shipping arrangements Assistance for Spanish speaking persons CHPS Certified with recognition for quality performance standards Se habla español. For further information, contact Barbara Chang: [email protected] www.nc-hs.com Toll-Free: 1.877.616.6247 • Fax: 1.877.777.5717 24747 Redlands Blvd., Suite B • Loma Linda, CA 92354 Jennifer and Donovan Guerrero, a mom and son meeting the challenges of an inhibitor Share what you know and change what is possible We learn from those who have been there before. That’s why Novo Nordisk created The Changing Possibilities Coalition. Whether you are dealing with a new diagnosis or have faced the challenges of hemophilia for years, you can share your experiences and insights to help others live a better life. Start by joining The Coalition today at JointheCPcoalition.com. Changing Possibilities in Hemophilia® Novo Nordisk Inc., 100 College Road West, Princeton, New Jersey 08540 U.S.A. Facebook® is a registered trademark of Facebook, Inc. Changing Possibilities in Hemophilia® is a registered trademark owned by Novo Nordisk Health Care AG. © 2011 Novo Nordisk Printed in the U.S.A. 0311-00001987-1 April 2011 6 HemophiliAction Advocacy Update Hemophilia Council of California Standards for Treatment for Hemophilia – Policy Brief Statement for Standards of Health Care Until the 1970s, people with severe hemophilia suffered from uncontrollable internal bleeding, crippling orthopedic deformities, and a shortened lifespan. More recently, the production of highly purified blood clotting factors has provided people with hemophilia and other bleeding disorders the opportunity to lead normal lives, free of pain and crippling arthritis. The preferred method of treatment of hemophilia today is intravenous injection, or infusion, of prescription blood clotting products several times per week, along with case management and specialized medical care at a federally designated regional Hemophilia Treatment Center (HTC). The Key to the Success of Covered California for People with Hemophilia Should Include: and placing Californians with these potentially devastating and unpredictable disorders in the hand of well-meaning clinicians who have no expertise in rare blood disorder diagnosis and management. While most standard insurance plan models also provide for this direct access to Hemophilia Treatment Centers, continued access to an HTC as an Essential Health Benefit is critical. The Hemophilia Council of California seeks to ensure that this is maintained as a health care benefit under the plans in CA that roll out in 2014 for newly insured patients. We specifically request that the Hemophilia Treatment Centers are in included in the Health Plan networks. 3. Access to a Broad Range of Clotting Factor Products: There are currently no generics for clotting factor. Patients have different reactions to different products. HCC believes it is critical to maintain access to a full range of clotting factor products for patients with Hemophilia and other bleeding disorders, as these pharmaceutical products are not interchangeable. 1. Keeping CCS and GHPP as Safety Net Programs for People with Hemophilia: 4. Minimizing High Cost of Co-Pays for Specialty Drugs: The May Revise proposes to fully fund CCS and GHPP as safety net programs for people with Hemophilia and other chronic conditions. CCS provides coverage for children with eligible conditions up to age 21 and GHPP provides coverage for those 21 and over with eligible conditions. These vital programs provide “wrap around” coverage and in some cases full coverage for patients with Hemophilia. Clotting factor is covered under both of these programs, as well. HCC supports maintaining these programs. Pharmacy benefits are cited as an essential benefit by the federal government. However, co-payment barriers exist today in many private insurance plans. If the co-payments are not equivalent to a typical brand name pharmaceutical product, patient compliance could be at risk. Poor patient compliance historically has produced some of the most disabled individuals in the hemophilia and bleeding disorders community. Therefore, the Hemophilia Council of California seeks to eliminate copayments for clotting factor, as is done in many other countries. 2. Access to Hemophilia Treatment Centers for Medical Care within the Networks: The Hemophilia Council of CA supports people with Hemophilia having, at a minimum, an annual evaluation at a federally designated HTC in order to maintain positive health outcomes for these patients. CDC studies determined HTC team based coordinated care lowers the risk of mortality and morbidity by 40%. A recent Missouri Medicaid study found HTC care lowers hospitalization and costs compared to Managed Medicaid. Patients in California with Hemophilia and other severe bleeding disorders have this direct HTC access under the public programs such as the California Children’s Services (CCS) and the Genetically Handicapped Persons Program (GHPP). However, Managed Medi-Cal is disrupting long standing HTC doctor/patient relationships, HemophiliAction 7 Beach Walk Dear Walkers, We are up and running! Our Walk Web site is now live and we need you to: Register your team by visiting: http://www.hemophilia.org/walk and clicking on “CA Los Angeles.” The process is very easy and user friendly. But if you need help registering, call the office and we will help you! Spread the word Let all your friends know that you are registered and raising funds for hemophilia by updating your Facebook status and sending e-mails. We will be helping you along the way, so don’t be shy and ask for help! Start fundraising Make a donation today and ask your family, friends and co-workers to support you initiative. Need fundraising ideas? Call us and we will help you! Have fundraising ideas to share? Share them with us and we will share them with the rest of the walkers! Remember: The more passionate you are about a cause, the more contagious your enthusiasm becomes to people you talk to and share our thoughts or beliefs with. It is never too early to start fundraising! Last year, more than 700 walkers and walk supporters came together to help spread the word about hemophilia and to raise funds for our cause. Our goal is to surpass all the success we achieved these past years and we are counting on your support! We cannot do this alone and need every bit of help we can get!!!!! This year, we are taking to the beach to show our support for the Southern California’s bleeding disorders community. Yes, you heard it!!! We will be strolling across the white sands of Santa Monica Beach! Mark your calendars and cancel any previous appointments you had scheduled for Saturday, October 19! Camina a la Playa Apreciados Caminantes, Estamos listos! Nuestro lugar en la red de la Caminata esta disponible y necesitamos que: WHAT: 5th annual Southern California’s Hemophilia Wal WHEN: Saturday, October 19, 2013 check in: 8am 5K walk: 9am WHERE: Crescent Bay Park in Santa Monica 2000 Ocean Ave Santa Monica, CA 90405 Come walk the extra mile beachside!!! Every step makes a difference so make yours count: Register and Start Fundraising Today!!!! Registre su Grupo Al visitar a: http://www.hemophilia.org/walk y hacer clic, en “CA Los Angeles.” Es proceso es muy fácil. Pero si necesita ayuda registrándose, por favor llame a la oficina y le ayudaremos. Nunca es muy pronto para empezar a recolectar fondos! El año pasado, mas de 700 caminantes y patrocinadores se unieron para compartir el mensaje sobre hemofilia y recolectar fondos para la causa. Nuestra meta es de sobrepasar el éxito que tuvimos los últimos tres años y estamos contando en su apoyo! No podemos hacer esto solos y necesitamos cada poco de ayuda que llegue!! Comparta el Mensaje Cuéntele a todos sus amigos y amigas que esta registrado y recolectando fondos para hemofilia al actualizar su pagina de Facebook y enviar correos electrónicos . Les estaremos ayudando así que no sea tímido (a) en pedir ayuda. Este año, estamos llevando la caminata a la playa a demostrar nuestro apoyo por el Sur de California y la comunidad con enfermedades sanguíneas. Si así lo escucho, estaremos caminando en la arena de la Playa de Santa Mónica! Marque sus calendarios y cancele cualquier plan que tenga ese día, para el sábado octubre 19. Empiece a recolectar fondos Haga donaciones hoy y pídale a miembros de su familia, amigos, con gente en el trabajo, a que le apoyen su iniciativa. Necesita ideas de como recolectar fondos? Llámenos y le ayudaremos! Qué: La Quinta Caminata Anual del Sur de California Cuándo : Sábado, Octubre19, 2013 Registro a : 8am 5K caminata: 9am Cuándo: Crescent Bay Park en Santa Mónica 2000 Ocean Ave Santa Mónica, CA 90405 Tiene ideas de como recolectar fondos? Compártalas con nosotros los compartiremos con los otros caminantes. Recuerde: que entre mas pasión tenga sobre la causa, será mas contagiosos su entusiasmo y la gente con la que lo comparte creerá en usted. 8 HemophiliAction Venga y camine en la playa!! Cada paso hace una gran diferencia, haga el suyo contar: regístrese y empiece a recolectar fondos!! T:8.375” S:7.125” Having issues with co-pays or gaps in coverage for your hemophilia A treatment ??? We may be able to help. Bayer offers a range of programs that can help you navigate insurance questions about your hemophilia A treatment. If you’re having issues with co-pays or gaps in coverage, we may be able to offer assistance. Speak with one of our case specialists to find out more. Call 1-800-288-8374 and press 1 to speak to a trained insurance specialist! Bayer and the Bayer Cross are registered trademarks of Bayer. © 2013 Bayer HealthCare Pharmaceuticals Inc. All rights reserved. 04/13 KN10000213A HemophiliAction 9 Education is the Driving Force, Rev Your Engines! The Hemophilia Foundation of Southern California (HFSC) held its Annual Family Information Day on Saturday, May 25, 2013. The event was held at the Automobile Driving Museum, located at 610 Lairport Street in El Segundo, California. With a “Pit Stop Lunch” and “Second Lap Vendor Booths” the 8:00 A.M. to 2:30 P.M. event served to educate the public about hemophilia and other bleeding disorders. Tamara Kato, HFSC President, and 2013 Slate of Board of Directors, presided over the President’s Annual Report. Thank you to our speakers, Doris Quon, MD, Director, Hemophilia Treatment Center, Orthopaedic Hospital; Guy Young, M.D., Director of the Hemostasis and Thrombosis Center at Childrens Hosiptal,Los Angeles; James. V. Luck, Jr., M.D., Professor and Residency Program at the Hemophilia Treatment Center at Orthopaedic Hospital; and Karen Wyatt-Coleman, M.S.W., Community Services Director, Helpline Youth aaCounseling, Inc. In 10 HemophiliAction addition to these “Hemophilia Today” speakers, HFSC welcomed other exciting speakers to discuss parenting and living as a teen with hemophilia: CJ Cook, MBA, HFSC Social Worker; Virna Alcantara, Calvin Dutcher, and Alfred Coleman. Numerous awards were distributed, as well, including the Big Stick Honorees 2012 (Josh Aponte, Maximiliano Fernando, and Jack Sneedon), and the 2012 Christopher Mark Pitkin Scholarship Award Winners (Fernando Luna, Richard Benson, Nicholas Self; Honorable Mention: Jose Flores, Clayton Ku, Kalvin Vivanco, Nicole Jarboe, Sarah Jarboe, Farin Gray, Nicole Coppage, Lawrence Gregge, Diego Ibarra, Kelsey McAdam, and Carl Schwarz). This HFSC gala really got our motors running! La Educación es la Fuerza que nos lleva , Prendan su Agnición! La Fundación de Hemofilia del Sur de California HFSC tuvo el Día de Información Familiar el sábado mayo 25, 2013. El evento fue en el Muse de Automóviles Clásicos localizado en 61º Lairport Street El Segundo, con un almuerzo rápido y mesas de ventas de 8am-2:30pm. El evento sirvió para educar al publico sobre hemofilia y otras enfermedades sanguíneas. Tamara Karo, Presidenta y miembro de la Junta Directiva 2013, presidieron el reporte anual . Gracias a los presentadores la Dra. Quon MD, Directora de Hemostasias & Trombosis Center at Children’s Hospital : Guy Young MD Director de Hemostasis & Trombosis Center Children’s Hospital Los Angeles ; James V. Luck Jr. MD Profesor del Programa de Residencia & Programa del Centro de Hemofilia del hospital Orthopedic; y Karen Wyatt-Coleman , M.S.W. Directora de servicios comunitarios Helpline Youth Counseling Inc. Adicionalmente a los presentadores de “Hemofilia Hoy.” HFSC le dio la bienvenida a otros presentadores que hablaron sobre el ser madre y/o padre, de un hijo con hemofilia y vivir siendo un joven con hemofilia; CJ Cook, MBA, HFSC trabajador social ; Virna Alcantara, Calvin Dutcher y Alfred Coleman. Una variedad de premios fueron entregados incluyendo premios “Big Stick”2012 (Josh Aponte, Maximiliano Fernando, y Jack Sneedon) y ganadores de la beca Christopher Mark Pitkin (Fernando Luna, Richard Benson, Nicholas Jarboe, Sarah Jarboe, Farin Gray, Nicole Coppage, Lawerence Gregge, Diego Ibarra, Kelsey McAdam y Carl Schwarz) Esta reunión nos prendió los motores!! HemMobile™: your personal logging tool Log infusions, track bleeds, and more regardless of what factor you use or what type of hemophilia you have. Developed with feedback from the community, HemMobile™ lets you log and share information at home or on the go with your iPhone®, iPod touch®, or iPad®. With HemMobile™ you can: • Record the date, time, location, and reason for every infusion • Share reports and information with your care team • Create a password to protect your data. Pfizer will not collect any of your personal information unless you choose to enroll in Hemophilia Village … and more iPhone, iPod touch, and iPad are trademarks of Apple Inc., registered in the U.S. and other countries. App Store is a service mark of Apple Inc. HEM535016-02 © 2013 Pfizer Inc. All rights reserved. Printed in USA/January 2013 HemophiliAction HEM535016-02.indd 1 11 4/2/13 2:29 PM 30th Annual Golf and Tennis Classic Luau We sincerely thank you for your generous contributions and support to the Hemophilia Foundation’s 30th Annual Golf and Tennis Classic held on June 10 at the Braemar Country Club in Tarzana. This momentous occasion could not have been possible without the support of friends like you, the generous title sponsorship by Baxter Bioscience, and the hospitality of Braemar Country Club. This year’s Luau themed classic was an enormous success! We had 134 golfers participate in the Classic. Your donations along with the sponsorship of many companies and groups raised us over $70,000 at this event to benefit Camp Blood Brothers summer camp. Together with our yearly fund-raising activities, this will help to send over 100 kids to camp in 2014. This year’s Classic included The Golf and Tennis Awards hosted by Dan Goodwin, Clem Adkins, and Perry Parker after our memorial dinner and cocktail reception; a live auction hosted by Keith Lehmann which offered wonderful items including a Cartier diamond necklace and earrings and a Louis Vuitton handbag donated from Catherine Leone and Keith Lehmann. Special thanks to Clean Sweep Supplies, Five Star Golf, Kenwood USA Corporation for live auction items; a wonderful lunch provided by TAL, Incorporated; and of 12 HemophiliAction course, a beautiful 18 hole round of golf at Braemar Country Club in Tarzana. This year’s raffle brought us many wonderful gifts from many of our friends including Roland Neill, Catherine Leone, Keith Lehmann, Karen Arrieta, Fino Painting & Decorating, MIDA Industries, California Electrical Services, Prudential, Cleanroom Services and Halper Fine Art. Special thanks to our contest sponsors: BJ Hula Girls Rum, Walgreens, Factor Support Network, Nawgan Drink, and the always lovely 2013 Laker’s Girls. Your presence and generous gifts kept all of our golfers happy throughout their play. Also, we give thanks to Firestone Beer, our Tennis Co-chair Clem Adkins and Tennis pro Scott Burton. All of your support helped make this event one of our greatest yet. We hope everyone who attended had a wonderful day! From all of us at The Hemophilia Foundation we thank you for your support and hope to see you all at our 5October which will take place at Crescent Bay Park on the beach in Santa Monica. So, put down your clubs for a day, grab your sandals and let’s head to the beach! Torneo 30 Anual de Golf & Tenis Clasico y Luau Sinceramente les agradecemos por su generosidad y contribuciones y apoyo durante el Torneo 30 de Golf y Tenis Clásico hecho en junio 10 en el Bramar Country Club en Tarzana. Esta importante ocasión no pudo haber sido posible sin el apoyo de amigos como ustedes, la generosidad del patrocinante Baxter Bioscience y la hospitalidad de Braemar Country Club. Este ano el torneo fue de estilo Luau y fue un gran éxito! Tuvimos 134 jugadores en el torneo clásico. Sus donaciones y patrocinio de muchas compañías y grupos recolecto fondos de mas de $70,000 y este evento beneficia el campamento de verano de Blood Brothers. Juntos nuestros fondos anuales enviaran a 100 campistas. El clásico de este ano incluye los premios de golf y tenis con anfitrión a Dan Goodwin, Clem Adkins y Perry Parker después de la cena conmemorativa y recepción, la subasta en vivo tuvo como anfitrión a Keith Lehman el cual ofreció grandes artículos de subasta donados por Catherine Leone y Keith Lehmann. Un agradecimiento especial a Clean Sweeps Supplies, Fiva Star Golf, Kenwood USA Corporations por los artículos para la subasta. El almuerzo fue proveído por TAL incorporated y claro el lindo club Braemar Country club en Tarzana. La rifa de este ano nos trajo muchos regalos y muchos de nuestros amigos incluyeron a Roland Beill, Catherine Leone, Keith Lehmann, Karen Arrieta, Fino Painting & Decorating, MIDA Industries, California Electrical Services, Prudential, Cleanroom Services & Halper Fine Art. Un agradecimiento especial a los patrocinadores de BJ Hula Girls Rum, Walgreens, por sus grandes paquetes de cuidado. Factor Support Network, Nawgan Drink y como siempre las hermosas chicas de los Lakers. Su presencia y generosidad mantuvo a los jugadores felices mientras jugaban. También agradecemos a Firestone Beer, nuestro director del Torneo de Tenis, Clem Adkins y jugador profesional Scott Burton. Todo su apoyo nos ayudo en hacer un gran evento. También le queremos agradecer a patrocinadores de Birdie : Aida Leone, Y patrocinadores de Tees Stephen Tentcoste de Trent Partners & Associates, Brother Healthcare, Octapharma, Joe Pugliese, THe Hemophilia Aliance Foundation, Red Chip Enterprise, Miller’s Children’s Hospital, THe Center for Comprehensive Care & Diagnosis for Inherited Bleding Disorders, BioRx, National Cornerstone y Biogen Idec. Esperamos que todos los que participaron hayan tenido un gran día! De todos de la Fundación de Hemofilia del Sur de California les agradecemos por su apoyo y esperamos verlos en al caminata en octubre la cual tomara lugar en Crescent Bay Park en Santa Monica. Así que guarde el equipo de golf y agarre sus sandalias para ir a la playa¡ HemophiliAction 13 Antiviral Oral Combination Successfully Treats Certain HCV Patients 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 interferonbased 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 to have a path forward toward a cure.” Source: AIDSmap.com, April 29, 2013 Combinación de medicina por boca Antiviral es Exitosa en Tratar el virus de Hepatitis C en ciertos Pacientes Un studio clinico el mes pasado demostró que una medicina de una vez al dia, con todas las medicinas combinadas en una, para tartar la infección de hepatitis C (VHC)- hecha por BristolMyers Squibb’s declatastavir (NS5A replication complex inhibitor), un instrumento con acceso directo- fue efectivo en todos lo pacientes. Se hizo el estudio con y sin la combinación de ribavirin, y excluyo interferon, el cual es notorio en causar efectos secundarios debilitantes. Los resultados del estudio fueron presentados por Mark Sulkowski, MD, professor de medicina en Johns Hopkins University durante la reunión Anual Europea de la Asociación para Estudios del higado (El Congreso Internacional del Higado 2013), abril 24-28, 2013 en Armsterdan, Netherlands. Todos los 41 sujetos estudiados tenian el genotipo 1 chronico del VHC. Mas de 80% tenían el subtipo 1a, el cual es dificil de tratar. Ellos representaron pacientes con VHC que no respondieron previamente al tratamiento basado de interferon terapia triple usando el interferon pegilado y ribavirin, con un inhibidor protease aprobado de VHC, o de boceprevir (Victrelis) o telaprevir (Incivek). fueron sostenidos de como respondian al virus (SVR) los cuales fueron el 100% en la porción de sofobuvir/declatasvir y 95% en la porción de sofosbuvir/declatasvir/ribavirin. SVR indica que el paciente esta “libre” del virus por lo menos por seis meses despues de completer la terapia. She llega a este punto, cuando los niveles del virus han bajado a niveles indetectables. De los 21 pacientes que completaron las 24 semanas despues de que el tratameinto terminó, todos tenian el virus indetectable, o 100% SVR en ambas porciones. Los investigadores reportaron que toda las medicinas fueron toleradas y con pocos efectos secundarios. “Esta información prueba el concepto que la combinación de dos medicinas potentes actuando como antivirales con diferentes metas virales tienen efectividad en pacientes que han fracasado en [interferon/ribavirin pegilado] además de inhibidor de protease,” concluyo Sulkowski. “Les podemos decir a nuestros pacientes que fracasaron en la terapia triple que ahora parece que hay un camino hacia la cura.” Recurso: AIDSmap.com, abril 29, 2013 Doce semanas despues que el tratamiento terminó, los niveles 14 HemophiliAction HemophiliAction 15 Experimental Hemophilia B Gene Therapy Tricks the Immune System In July, researchers at The Children’s Hospital of Philadelphia (CHOP) published the results of a study in which they used bioengineered decoys as a ruse to foil the immune system. This allowed for the successful delivery of gene therapy in mice with hemophilia B, or FIX deficiency. The lead author of the study was Katherine High, MD, director of CHOP’s Center for Cellular and Molecular Therapeutics. High and her team used capsids, the protein shell that encapsulates a virus, as the decoy. They also used adeno-associated viruses (AAVs) as delivery vehicles, or vectors, to carry the actual genetic material that triggers the production of factor IX. AAVs have recently become the “vector of choice” for researchers because they can deliver the genetic material into living cells to sustain therapeutic effect without causing disease. In addition, they can be targeted to liver cells, which manufacture FIX. However, one drawback in using injected AAVs is the body’s natural immune response. In some cases, antibodies are released, neutralizing the AAVs. To remedy that, investigators injected both empty capsids and genetically altered AAVs into the mice. The empty capsids effectively drew antibodies to them and away from the gene therapy. Quality Safety 16 ©2012 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA www.CSLBehring-us.com MTL07-12-0001 7/2012 HemophiliAction This technique also proved effective in follow-up studies performed in rhesus macaque monkeys. The therapy initiated higher levels of factor IX production, with no adverse events reported. Although additional studies, including clinical trials in humans, will be necessary before such a therapy becomes a reality, the authors are encouraged by these preliminary findings. “Our results, which held up over a range of doses, suggest that in clinical studies, it will be feasible to adjust the ratio of empty capsids to gene vector doses, depending on an individual’s pre-existing level of neutralizing antibodies. That means we could personalize gene therapy to make it more efficient for each patient,” concluded High. “This work should make it possible to bring effective gene therapy to most adults with severe hemophilia B. Each patient would receive a personalized final formulation that contains just the right amount of empty capsid to neutralize any pre-existing antibody, and allow the gene-expressing vector to reach the liver.” The study, “Overcoming Pre-existing Humoral Immunity to AAV Using Capsid Decoys,” was published in the July 2013 online issue of Science Translational Medicine. Source: Science Daily, July 17, 2013 At CSL Behring Innovation leads the way Committed to making a difference in patients’ lives Therapies Patients Innovation “This decoy strategy could be individualized to patients and could greatly expand the population of patients who may benefit from gene therapy,” said High. “Right now, 30 to 60 percent of adult patients develop antibodies that block the ability of an intravenously infused vector to reach the target cells in the liver. This approach holds the promise of overcoming this roadblock--pre-existing antibodies--and allowing successful intravenous gene therapy in virtually all adult patients.” As the industry leader in coagulation therapies, CSL Behring offers the most extensive portfolio of coagulation products for patients with factor deficiencies, including FI, FVIII, FIX, FXIII, and von Willebrand factor. And we continue to broaden our efforts with a number of recombinant factor therapies in development, including rFVIII, rFVIIa, rFIX, and rVWF. Life For more information about our factor products for hemophilia, von Willebrand disease, and other rare bleeding disorders, or to learn about our innovative patient programs, please visit www.cslbehring.com or call consumer affairs at 1-888-508-6978. HFSC Picnic at Travel Town HemophiliAction 17 HFSC Picnic at Travel Town 18 HemophiliAction Therapies Patients Innovation Quality Safety Life At CSL Behring Innovation leads the way Committed to making a difference in patients’ lives As the industry leader in coagulation therapies, CSL Behring offers the most extensive portfolio of coagulation products for patients with factor deficiencies, including FI, FVIII, FIX, FXIII, and von Willebrand factor. And we continue to broaden our efforts with a number of recombinant factor therapies in development, including rFVIII, rFVIIa, rFIX, and rVWF. For more information about our factor products for hemophilia, von Willebrand disease, and other rare bleeding disorders, or to learn about our innovative patient programs, please visit www.cslbehring.com or call consumer affairs at 1-888-508-6978. ©2012 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA www.CSLBehring-us.com MTL07-12-0001 7/2012 HemophiliAction 19 Hemophilia Foundation of Southern California NONPROFIT US POSTAGE PAID OAKLAND CA PERMIT NO.3729 A Non-Profit Charity Dedicated to Serving the Needs of the Bleeding Disorders Community. Hemophilia Foundation of Southern California 6720 Melrose Avenue Hollywood, CA 90038 Tel: (323) 525-0440 Fax: (323) 525-0445 [email protected] www.hemosocal.org Hemophilia Foundation of Southern California 2013 Calendar of Events August 3 August 12 August 15 August 18 – 24 October 3 – 5 October 19 Dec 6-8 Picnic and Affordable Car Act Presentation * LAUSD School Nurse Training Dodger Game Bike Race NHF Annual Convention, Anaheim, CA Hemophilia Walk – Crescent Bay Park, Santa Monica Retreat, Camp Malibu * Regional Meetings TBA Los Angeles, Inland Empire, Orange County, Santa Barbara/Ventura* • Dates & locations are subject to change www.hemosocal.org Telephone: (323) 525-0440 Fax: (323) 525-0445 Calendario de la Fundación de Hemofilia del Sur de California Calendario de Eventos 2013 Agosto 3 Agosto 12 Agosto 15 Agosto 18 – 24 Octubre 3 – 5 Octubre 19 Diciembre 6-8 Picnic y Presentation sobre el Acta de Cuidado Accesible Entrenamiento de Enfermeras del LAUSD Juego de los Dodgers Carrera de bicicletas Convencion Annual de, Anaheim, CA Caminata de Hemofilia– Crescent Bay Park, Santa Monica Retiro Familiar, Campamento en Malibu * Reuniones Regionales Los Angeles, Inland Empire, Orange County, Santa Barbara/Ventura* • *Fechas y lugares pueden cambiar- (SD- Sera Determinado) www.hemosocal.org Teléfono: (323) 525-0440 Fax: (323) 525-0445 20 HemophiliAction