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hiv notebookHemophilia OUTLOOK
The Hemophilia Association of New York, Inc.
‚ SPRING 2010 ‚
Missing: Nearly 25% of the minimum goal for this year’s HANY GOLF 2010
3rd Annual Matthew Lee Greer Golf
Classic – June 21st
17th Annual Nick Salerno Memorial Golf
Tournament – July 12th
Early bird sponsors include: Inspiration
Biopharmaceuticals, Bayer HealthCare, FX
Concepts, Inc., Novo Nordisk, PC Richard
& Son, Amchem Inc., the Greer Family,
Starbucks, the Petti Family, Greenwich
Residential Properties, the Taylor Family, Si usted necesita traducción or
NATIONAL HEALTH.WHAT’S NEXT?
interpretación en espaZol de algjn
In 2010, Insurers can’t deny coverage to articulo en este letras de noticias por
favor de llamar a Ann Peréz o
banned from capping lifetime benefits, and Gabriela Blum al (212)682-5510.
are not allowed to cancel coverage if a policy holder gets sick. HEALTH-RELATED MATERIAL IN THIS NEWSLETTER IS PRESENTED FOR INFORMATIONAL PURPOSES ONLY. THE HEMOPHILIA ASSOCIATION OF NEW YORK (HANY) DOES NOT ENGAGE IN THE PRACTICE OF MEDICINE, NOR RECOMMEND SPECIFIC TREATMENTS OR DRUGS. YOU ARE URGED TO CONSULT YOUR PHYSICIAN OR LOCAL TREATMENT CENTER BEFORE PURSUING ANY COURSE OF TREATMENT. HANY DOES NOT ENGAGE IN THE PRACTICE OF LAW. SPECIFIC LEGAL ISSUES SHOULD BE DISCUSSED WITH A QUALIFIED ATTORNEY. TRAVEL TIPS: PREPARING FOR
In addition, if you bring needles onto an SECURITY SCREENING
airplane in your hand luggage you must also have the clotting factor with you. Check with your airline at least two days prior to departure to learn their specific regulations regarding the transport of medications. Each airline is developing regulations that are Following is a link to the Transportation TAX DEDUCTION REMINDER
If you itemize your tax return remember that expenses that cumulatively exceed 7.5% of your adjusted gross income are deductible. deductible (check Internal Revenue Service your out-of-pocket cost for prescriptions, If you used your personal auto to get to medical destination, you may deduct 24¢ per • If you have documentation about your 2009. If you traveled by taxi, bus or other medical condition or disability, present it to the security officer. (TSA does not NATIONAL HEMOPHILIA
FOUNDATION’S ANNUAL MEETING
When traveling with your clotting factor, it is advised that you bring a prescription from It’s not too early to start planning for NHF’s information, as well as a letter from your condition and the need for this medication. 2010 HEMOPHILIA DAY IN ALBANY
JULY 9th, DEADLINE FOR HANY
In March, HANY volunteers and staff joined with other representatives from around the state to brief New York legislators on the needs and concerns of the bleeding disorders university, graduate or vocational school in In addition to promoting greater awareness Applicants must have, or be the child of a supporting certain features of the proposed person who has, a genetic bleeding disorder national health care bill, the key point was live within the 14 southeastern counties of use of tier 4 co-payments (high percentage we must receive completed applications by Brodsky. They also met with staff members of Senator Andrea Stewart-Cousins, Senator Velmanette Montgomery and
Assemblywoman Ann Carrozza.
OTHER SCHOLARSHIPS AVAILABLE
LOAN PLAN’S 1ST GRADE IS F
inaugurating a new scholarship for students with bleeding disorders. The Alex Lieber college loans was created to serve as many as 45,000 students a year but opened this semester with just 46 applications in the demonstrate good academics but above all, a well rounded volunteer service background. The deadline is June 1. The scholarship will be given as two American Express gift cards to help offset the cost of a higher education $1888,000 in loans to 30 students, after and can be used for books, transportation, officials sold nearly $100 million in bonds Pfizer pharmaceutical is offering Soozie taxpayer money, which was allocated in last year’s state budget to keep interest rates on school students. The deadline is June 15. Officials hope that the only issue holding between semesters rather than at the start of For a full list for the various scholarship the school year. Check the college of your programs look at the website of LA Kelley FDA APPROVES NEW VON
FDA APPROVES NEW INDICATION
WILLEBRAND DISEASE PRODUCT
FOR TRANEXAMIC ACID
(FDA news release dated November 2009) (FDA) have approved the first nonhormonal product to treat heavy menstrual bleeding in Wilate®, an injectable human-derived von women (menorrhagia). Lysteda (tranexamic Willebrand factor (VWF)/factor VIII (FVIII) acid), manufactured by Newport, KY-based concentrate for the treatment of spontaneous antifibrinolytic agent that prevents the patients with all types of von Willebrand disease (VWD). Wilate® is also indicated A synthetic derivative of the amino acid for the treatment of patients with mild or available for more than 20 years. It was first desmopressin (a synthetic version of the approved by the FDA in 1986 as an injection following tooth extraction in patients with According to Octapharma, Wilate® is the hemophilia. This newly approved indication first double virus inactivated VWF/FVIII, in tablet form will help address the relatively high-purity concentrate. A solvent/detergent high national prevalence of menorrhagia. process and a special dry-heating system are “Menorrhagia can be incapacitating for FDA’s associate commissioner of women’s health. “Heavy menstrual periods can cause pain, mood swings, and disruptions to work “The FDA approval of Wilate® makes this Side effects of Lysteda include headache, sinus and nasal pain, back and abdominal developed and manufactured specifically for pain, muscle cramps, anemia and fatigue. VWD. Its unique viral attenuation steps and The FDA also noted potentially severe side it's close to 1:1 ratio of FVIII and VWF will effects associated with Lysteda, particularly provide a next generation treatment option for patients with von Willebrand disease,” hormonal contraceptives. According to Scott University Hospital, Professor of Medicine Reproductive and Urologic Products in the and Pathology and Director of the Division Research, using the two drugs may increase the risk of blood clots, stroke or heart attack. Jersey. It is a division of Octapharma AG of hormonal contraception should take Lysteda only if there is a “strong medical need,” and if the benefit of treatment will outweigh the potential increased risk. The film "Bad Blood"
concern that the virus was in the nation's America’s Blood Centers newsletter, March blood supply. By the time the infected factor units were pulled from the market, 10,000 hemophiliacs had been infected with HIV, New Film Tells Story of Hemophiliacs
Contracting HIV, Hepatitis from Infected
Factor Concentrates in 1980s
"As the hemophilia community realized the extent to which the government had been lax producer/director tells the tragic story of and the extent to which the safety of patients figured last in the equation of costs, benefits, were infected with HIV and hepatitis after and profits, they began to fight back," the representation on regulatory panels, argued for greater separation between regulators and industry, and positioned themselves as The film, "Bad Blood," features interviews with doctors, nurses, investigative reporters, According to Ms. Ness, the idea for the film scientists, and survivors from the hemophilia friend who was a hemophiliac infected with HIV and hepatitis from contaminated factor concentrates. "Diagnosed with hemophilia "News stories and outtakes spanning five decades reveal disturbing pharmaceutical school, Matthew had ‘come out’ as an industry practices including drug addicts activist during his undergraduate years at Cornell, at a time when AIDS (and because thousands of units of blood being pooled stigma. By 1999, he had narrowly escaped into huge vats," says a summary on the Web death from an AIDS-related infection, and site of Necessary Films, which is owned by he felt strongly that not enough was being producer/director Marilyn Ness. "But what done to alert people to the ongoing issues gives this film its greatest power are the stories of survivors and their families, who After Mr. Kleiner died in 2003, Ms. Ness wrote, "the film took on a new urgency and The 70-minute film is being prepared for an Stations and may premiere at the Tribeca Film Festival in New York City, April 21- investigative findings, rarely seen foot and May 3. The film will be accompanied by a photographs, and most importantly, to other In the 1980s, a deadly, unknown virus began to affect mostly gay men – and then showed FDA Issues Recall of Huber Needles and
Huber Infusion Sets
(NHF Medical Advisory #410, January 29, The Hemophilia Association of New York and other sources provided information to care providers on the recall of Huber The film "Bad Blood"
Exel/Exelint Huber needles, Exel/Exelint America’s Blood Centers newsletter, March 12, 2010 (Continued from Page 5) “Securetouch+” Safety Huber Infusion Sets, manufactured by Nipro Medical Corporation On her Web site, Ms. Ness bills herself as a implanted under the skin of chronically ill the likes of acclaimed filmmaker Ric Burns . patients for repeated access to veins for the She founded Necessary Films in 2005, and is devoted to "bringing relevant social issues medication, nutritional solutions, blood needles should be designed to penetrate the About 25 percent of the plasma worldwide silicone cores (or slivers) from the ports into used in making pharmaceuticals comes from volunteer donors as "recovered plasma." In the US, the voluntary sector uses the profits subsidize the price of blood. The rest comes • www.accessdata.fda.gov/scripts/cdrh/cfd • www.accessdata.fda.gov/scripts/cdrh/cfd Manufacturers do not use a plasma donation until the individual subsequently returns and tests negative for all disease markers. This infectious donors within the limits in which effects) or product quality problems with the pathogen inactivation technology can work to prevent "breakthrough" infections. This program either online, by regular mail, fax
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