| Show 'ww1rNI A36 The Salt Lake Tribune NATIONWORLD Hemophiliacs Out for Blood at Inaction Over By Gilbert M Gaul KNIGHTRIDDER NEWS SERVICE Maxine Segal recalls first feeling betrayed then angry as she listened to the doctors from the National Hemophilia Foundation testifying against her youngest son Doug a hemophiliac and father of three who was dying of AIDS Only the day before Segal buried her other son Scott at age 36 He too was a hemophiliac and like his younger brother had AIDS from using tainted ld con-trad- ed medicine After blood-clottin- g much debate the brothers had decided to sue the medicine's manufacturer -I helped to start the National Hemophilia Foundation I organized one of the first three chapters in Miami I expected they would help us" Segal recalls Instead two former NHF doctors testified that the manufacturers had not been negligent -- I felt betrayed" says Segal In part because of the doctors testimony Doug Segal lost his case le died six months later I will never ever forgive them- - says Maxine Segal I have dedicated' the rest of my life to seeing that those doctors are held accountable and to seeing that my sons stories get told" Thursday Segal got her chance The 44th annual meeting of the National hemophilia Foundation opened in Atlanta and Segal and others like her were ready for battle Unlike previous conventions which focused on social events and research efforts this four-da- y event promises to be an exaffair plosive marked by bitter recriminations demonstrations and even picket lines The reason: America's hemophiliacs are dying in startling numbers — more than 1500 so far But they are not -- soul-searchin- ens to be a Waterloo for the NIIF An increasing number of hemophiliacs say the foundation has ceased to represent their interests Many say they have had to turn to AIDS groups for medical information "What we want is for the national organization to be honest and to truly represent our concerns and issues" says Dana Kuhn of an N'HF committee the Men's Advocacy Network Kuhn a Virginia father of two young children is an hemophiliac In early October Kuhn and other MAN members sent the NIIF's executive committee a list of 10 demands including calls for a compensation program and a congressional investigation of how clotting medicines became tainted Now they are threatening to resign from the NIIF unless their demands are met The peer association set up picket lines around Nlirs annual meeting and held demonstrations "We demand that all of the NIIF board resign on the spot And we want to draw attention ficials have been sent allowing other current and former NW officials He says the NHF moved as rapidly as it could "given the uncertainty of the times" to protect its members "There is some 0 hindsight going on here" he says More than half of the approximately 20000 Americans with hemophilia are infected with AIDS 20-2- of- prison for to 0131111101001E k:!- -11 4- Fr L ' MiRitt 1 0 I ' - Pt it:::tly?4 - With our KODAK CREATE-A-PRIN35 mm Enlargement Center and your favorite 35 mm negative you can create big beautiful enlargements right in our store in minutes—all Just ready for insert your 35 mm negative push a button roll a ball turn a dial and in minutes you'll have your very own 5" x 1" 8" x 10" or II" x quality enlargemelt Come in today and see for yourself—we've got the biggest gift ideas ever! 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I : - Gifts full-blow- 1 Imm21-7-7- d Make Great full-blow- HIV-positi- StitRUE blood-clottin- g Photo Enlargements As of June 30 2243 American n hemophiliacs had developed AIDS the NM' estimates Of those 1551 had died: including nearly 100 children Probably all of the more than 10000 hemophiliacs who are now HIV positive n will one day develop AIDS and die AIDS-contaminate- d blood products to be used The hemophiliacs there went crazy and got results "Fm not saying were going to do all of the things they did over there but we're going to do some attention to how things that draw bad it is here- - says Rosenberg whose older hemophiliac brother Peter died two years ago from AIDS contracted from tainted clotting medicine Alan Brownstein NIIF's executive director for the last 11 years acsays he supports the growing -tivism of hemophiliacs Overall its more positive than negative" Brownstein believes the anger and hostility being directed toward the NHF is -- misdirected and divisive" a view shared by - e elf heat-treate- d Unleash the power of music blood-clottin- g Do-lt-Yours- manufacturers began marketing safer clotting Sony8CD: after years of silently AIDS-infecte- although not all have symptoms of the virus About 12 of the spouses of hemophiliacs have been infected through sexual contacts generally before the risks were known Among hemophiliacs with the severest form of the bleeding disorder an estimated 70 or about 12000 are Nearly all contracted AIDS before 1985 when an effective test for infected blood was first introduced and §malb bleeding disorder which ravages joints and muscles They are dying from AIDS contracted during the early '80s while using tainted clotting medicines known as Factor VIII and Factor IX More than 50 of the nation's hemophiliacs — at least 10000 are accepting their fate the nation's hemophiliacs want answers They want to know why the National Hemophilia Foundation and the US government did not do more to ensure the safety of medicines when their link with AIDS first became apparent They also want to know if financial ties between NIIF and the manufacturers which help underwrite the convention colored those decisions And they want to know why current and former NHF physicians have been allowed to testify against hemophiliacs in lawsuits accusing manufacturers of negligently distributing tainted factor They say that such testimony makes it nearly impossible to win against already daunting odds Finally they want to know why the United States is one of only a handful of Western industrialized nations that has not set up a compensation fund for hemophiliacs and their families to help with spiraling medical costs? 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