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  • Alabama hemophilia chapter advocates with insurance company | HemAware
    wife and I went and had lunch with him I talked as the voice of the chapter and my wife went as the don t mess with me mom She made everything personal and showed pictures of our son He got to know who we were and what the realities are of living with or being a person with hemophilia After that meeting he said I m going to tell BCBS that we need to rethink our plans I think it was talking family to family person to person it helped out a lot Why did you decide to advocate with an insurance company We have a good relationship with the insurance company Alabama is a conservative part of the country there isn t a big sense down here that insurance companies are all bad Since I own a business I talked to them from a business to business point of view They were misinformed as to a lot of it but the way they were looking at it it made sense from a business perspective Now they will call me when they re going to do something provider related and say We want to know what the chapter thinks What has been the end result When BCBS told us about moving to a single provider we said we didn t necessarily want unlimited choice of home healthcare providers but we did want a choice of quality providers They ve decided they re probably going to restrict the network to three home healthcare providers Have you done any advocating to the legislature We ve been working on a Hemophilia Standards of Care Act bill similar to MASAC 188 MASAC Recommendations Regarding Standards of Service for Pharmacy Providers of Clotting Factor Concentrates for Home Use to Patients with Bleeding Disorders We

    Original URL path: http://www.hemaware.org/story/doing-something (2016-02-18)
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  • Workshop Examines Emerging Hemophilia Therapies | HemAware
    an oral therapy for bleeding disorders Fucoidan hampers the body s inherent anti clotting actions Since fucoidans can be a natural part of a person s diet there is less concern about adverse immune system reactions Another researcher working in the area of oral therapy for hemophilia is Roland Herzog PhD of the University of Florida in Gainesville His team is focusing on the increasing number of people with hemophilia who develop inhibitor s antibodies to therapeutic factor People with hemophilia B who develop inhibitors are at risk of severe allergic reactions to factor IX FIX product which makes treatment especially difficult Herzog s team is developing an orally delivered FIX modified to grow in plant leaves It has been shown in animal models to promote tolerance to FIX therapy while substantially lowering the risk of allergic reaction Other technologies are making the move from the lab to the clinic Clinicians reported positive results from clinical trials testing both longer lasting and faster acting recombinant FVIIa products which will benefit people with inhibitors to factors VIII and IX Both products are nearing the final stages of testing While improved recombinant clotting factor products remain an important area of research the quest for effective and safe gene therapy treatment for hemophilia continues The challenges of delivering a functional factor encoding gene to the body without triggering the immune system remain Yet innovative approaches arise from seeming roadblocks VandenDriessche s research team is investigating an emerging technology involving transposons groupings of mobile DNA to combat hemophilia B The team is working to plug the FIX gene into a super efficient transposon that could safely deliver the gene to cells that could make FIX Because this approach doesn t use a modified virus as a gene delivery vehicle the expectation is that the

    Original URL path: http://www.hemaware.org/story/workshop-examines-emerging-hemophilia-therapies (2016-02-18)
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  • WFH “Treatment for All” Goal Is Global | HemAware
    longer fuller lives than ever before However in the developing world only about 25 of people with bleeding disorders receive adequate treatment The rest die young or are at great risk of permanent disability In Indonesia a mother comforts her son with hemophilia A Global Partnership In 2003 WFH established the Global Alliance for Progress GAP program to introduce or improve care for people with bleeding disorders in up to 30 targeted developing countries over 10 years Since then GAP projects have been launched in 16 countries with 43 971 new patients Through GAP countries work toward long term improvement in care For example when Russia joined the GAP program in 2004 treatment products were mainly available only in St Petersburg and Moscow Over the years the Russian Hemophilia Society with the support of the WFH successfully lobbied the government to purchase more factor concentrates Today treatment is available in every region in Russia and a large number of children are on prophylaxis In 2009 the Russian government purchased 588 million international units IUs of clotting factor concentrates The availability of safe treatment products is lacking in many developing countries The WFH channels donations of products through our Humanitarian Aid Program Donations help hemophilia organizations and treatment centers develop ongoing care programs Donated products are also used for emergent life threatening cases in countries with limited treatment Since 2003 more than 90 million IUs of factor have been channeled through the WFH to 68 countries around the world See The International Factor HemAware January February 2009 As a global community we can all work together to achieve Treatment for All Available care is fundamental to improving our health and our lives Our challenge is to ensure that all people with bleeding disorders no matter where they live receive proper treatment

    Original URL path: http://www.hemaware.org/story/heal-world (2016-02-18)
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  • Doctor’s Orders | HemAware
    on prophylactic regimens report very good adherence Children who are infused by a parent are significantly more adherent than teens and adults who infuse themselves The worst area of adherence according to Duncan s research is administering factor at the right time Ideally they should do it in the morning so they have better factor coverage when they are most active says Duncan Communication is another area that needs work A lot of patients are so used to treating themselves that if they do have problems they re reluctant to call us Duncan says They think it will inconvenience us The researchers have also found that when people skip infusions it s usually because they don t have time or it s not convenient not because they merely forgot Strategies for Improvement If you re having trouble adhering to your regimen tell your HTC staff What s most important is that patients are honest Duncan says They re not going to get in trouble No one s going to scold them Instead the HTC can help you overcome the practical challenges that sometimes make adherence difficult If an every other day schedule is too hard to maintain for example perhaps three times a week would work This may not be possible if you have inhibitors however Sometimes it s not just the practical challenges that hinder adherence says Sue duTreil PhD LCSW senior counselor at the Louisiana Center for Bleeding and Clotting Disorders She is also an adjunct assistant professor at Tulane University Normal developmental stages can also bring challenges duTreil says especially when it comes to teens Our adolescents often test the boundaries of their independence she explains Plus they often want to be like everyone else like their peers who don t have to give themselves regular infusions Summer camp often provides the setting for children to see their peers with bleeding disorders learning to infuse taking some of the stigma out of it Staff can help reinforce the importance of adherence Low self esteem can also hinder adherence People with higher self esteem believe in themselves more and take better care of themselves duTreil says She s convinced that efforts to bolster self esteem will also improve adherence Instead of pointing out that your son isn t sticking to his regimen for example you can boost his self esteem by focusing on things he does well duTreil says Logging infusions can help patients parents and treatment teams identify and overcome such roadblocks to adherence Logging can be as basic as tearing off the factor box top and writing the date and time on it duTreil says Other patients rely on spreadsheets either homemade or provided by their HTCs Still others use Web based programs such as the Advoy system administered by the American Thrombosis and Hemostasis Network ATHN or those offered by factor manufacturers and homecare agencies Soon there will even be an iPhone logging application see sidebar One Patient s Solution The most important thing to

    Original URL path: http://www.hemaware.org/story/doctors-orders (2016-02-18)
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  • Exercising Inexpensively | HemAware
    your own physical therapist to set up a resistance band routine that is right for you Your routine should take into account any problem joints you have as well as your current strength and abilities I practice everything with my patients to make sure they are doing it right Forsyth says You need to have the right form and you need to have control Exercise Balls Exercise balls also called Swiss balls or stability balls are inflatable lightweight and bouncy They don t cost much but provide good results Physical therapists like them because they can work wonders on an often neglected muscle group your core Strengthening your core which includes muscles in your abdomen and back can boost your balance and make most physical activities easier and safer A strong core can improve your posture lower your risk of back pain and help prevent muscle injuries Steps for Living Maintaining a Healthy Body Most people have weak core muscles says Ruth Mulvany DPT MS PT physical therapist for the University of Tennessee Comprehensive Hemophilia Clinic She is an associate professor in the physical therapy department at the University of Tennessee They don t think about controlling their middle Working out on a ball however leaves you no choice but to control your middle The simple effort of keeping your balance gives your core a solid workout If you are unable to maintain your balance you ll roll off the ball which is why it s also important to monitor children who use it There are many exercises you can do with a ball from abdominal crunches to back extensions A patient of Mulvany s used one to do pushups Lying with the ball under his stomach he lowered himself partway to the floor That way he could work his muscles without the strain of a straight pushup The ball not only absorbed some of his weight making the exercise less strenuous but it also helped stabilize his core Mulvany says Even couch potatoes can benefit from exercise balls Simply sitting on the ball and keeping it steady will build core strength Just make sure to buy the right ball for you See Learn More on how to select the correct size Although many people find exercising on a ball fun and comfortable you do get a real workout As with any new workout physical therapists caution you to go slowly Exercise at least three times a week but build your stamina gradually and don t work the same muscle group two days in a row For example if you work your upper body one day focus on your lower body during your next workout Stretching Toward a Goal Both Mulvany and Forsyth encourage the use of novel exercise equipment and strategies to keep things interesting Forsyth advises her patients to scan their kitchen pantries for workout props Do a bicep curl with a small can of spaghetti sauce she suggests Anything that adds resistance will add to your workout

    Original URL path: http://www.hemaware.org/story/exercising-inexpensively (2016-02-18)
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  • New Women’s Health and Bleeding Disorders Institute | HemAware
    PRF outside the bleeding disorders community To do this the institute is developing a broad awareness campaign to reach undiagnosed women in particular those between the ages of 18 and 25 The institute receives funding from a Centers for Disease Control and Prevention CDC 5 year cooperative agreement as well as from CSL Behring and Grifols Getting Help for Young Women According to the CDC up to 1 of people in the US have VWD but don t know it We want to target younger women says Kathleen Roach MPH MBA NHF regional director of chapter services who will lead the institute A study that the CDC conducted a few years ago showed that it takes about 16 years for a woman to be diagnosed with von Willebrand disease Women are living with excessive bleeding and painful periods being misdiagnosed or going undiagnosed for years Earlier diagnosis helps prevent complications such as unexpected and prolonged bleeding after surgery or childbirth and unnecessary procedures like hysterectomies If we can provide the education and awareness to younger people that could save them many years of grief and misery Roach says Flax who is based in Ann Arbor Michigan is eager to visit chapters and hemophilia treatment centers HTCs I m really looking forward to hearing from staff at the chapters and the HTCs to learn more about what they re seeing what they re struggling with Flax says More important I want to hear from the women who have been diagnosed They have a lot of expertise and information they can share about getting this information out to other women Learn More Contact Patrice Flax MS MSW or Kathleen Roach MPH MBA Visit the Women s Health and Bleeding Disorders Institute Web page View the discussion thread Life Stages Infants Children Teens

    Original URL path: http://www.hemaware.org/story/expanding-awareness (2016-02-18)
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  • Researcher preps actor Harrison Ford for movie role | HemAware
    portray in the movie was that only one therapy is brought forward With protein therapies and this is true for hemophilia different people tolerate different protein therapies differently some better than others And there s only a finite amount of money Let s say you have four good therapies that benefit 10 20 or 60 of the population each with a different optimal therapy They will bring forward the one that benefits 60 and the other ones will be left on the sidelines In your opinion was the role of the researcher accurately portrayed In the movie the scientist is a crotchety antisocial type of guy which in my opinion scientists are not We are in fact socially adept But from the point of view that the science was accurate and that he had been working on it for 20 years and competing with other scientists that s totally true Is there a lot of competition among scientists By definition you have competition and partly because of a finite pool of resources that can be dedicated to bringing a product forward to clinical trial and production You will see that second place and third and fourth are losers That was the most poignant part of the movie for me The researcher s work was not chosen to go forward and he had to see the results of four competing efforts and concede that his was not the best After 20 years of your life that s a very disappointing thing But that s the way life is in this world of discovery science and translational medicine where you re in preclinical animals and then into clinical studies in humans It s like a relay race and sometimes you have to hand the baton off to the next person in the race That can be painful because it s your baby Tell me about your current research I work with transgenic livestock animals that are genetically engineered to make human protein factors VIII and IX in their milk I deal exclusively with making an abundance of the protein When you have intravenous therapy that s 100 recovered protein You get it in your veins and it s in If you try to take any other route other than infusion you re going to have tremendous losses Those losses will amount to 97 to 99 even in the most optimized formulation when you re trying to put it in orally or nasally If you could throw away 99 because it s made so abundantly and effectively then you can start thinking about an infant or a toddler or young kid who doesn t have to inject at all He can just take a puff or put a paste in his mouth a couple of times a day and keep his levels above the minimum that he needs to have normal coagulation That would be a miracle You can t do it until you have tons of it to throw away you can

    Original URL path: http://www.hemaware.org/story/ford-focus (2016-02-18)
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  • Hematologist leads National Institutes of Health division | HemAware
    of Health NIH in Bethesda MD He leads a staff of 30 and oversees a research budget of nearly 500 million which is distributed to researchers across the US It was the chance to have an impact on the science more broadly than what I traditionally have been involved with and to take on a new challenge at this stage of my career Hoots says Research Outlook A promising research area for the bleeding disorders community is the way that cells interact with proteins in response to injury Hoots says While researchers working in the field of bleeding disorders usually examine how deficiencies in proteins cause excessive bleeding now they are also studying the effect cells have with these proteins that leads to appropriate blood clotting and repair of injured blood vessels I hope that this will result in a more complete understanding of all the elements that interact to produce normal clotting in response to injury Hoots says This knowledge could then direct new avenues of research to enhance clotting in the face of too much bleeding or to reduce clotting activation when thrombosis is most likely to occur In the next decade Hoots says challenges include continuing to improve quality of life with better and longer acting factor concentrates and exploring the role that gene transfer could have in treating or curing bleeding disorders Other priorities are to improve understanding of von Willebrand disease and to identify focused therapy for specific rare bleeding disorders which have customarily had a nonspecific therapeutic approach For example we have traditionally relied upon fresh frozen plasma FFP to treat both factor V and X deficiencies because the diseases are so rare that neither specific recombinant factor V or X has been developed Hoots explains Orphan drug development may fill the gap Alternatively

    Original URL path: http://www.hemaware.org/story/national-stage (2016-02-18)
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