NY TIMES

http://www.nytimes.com/2003/06/05/business/05MAX.html?ex=3D1055476800&en=3D=1019492e33b55613&ei=3D5062&partner=3DGOOGLE June 5, 2003 Questions on Choice of Foundation for Drug Program** *By STEPHANIE STROM and MATT FLEISCHER-BLACK*Novartis says that its choice of the Max Foundation to run its ambitiousprogram to give away Glivec was largely a result of the foundation'ssuccess establishing a bone marrow registry for leukemia patients.But while the registry is promoted on the foundation's Web site and inother documents, it has never come into existence, and, indeed, hasbecome a focus of bitter criticism in registry circles."There was never any registry," said Leeora Freifeldt, an Israelipatient advocate who worked with the foundation on the project until shehad a dispute with its founder, Pedro Rivarola.After he was unable to find a marrow donor to save his son Max's life asthe boy was dying of leukemia in 1991, Mr. Rivarola set out to establisha bone marrow registry comprising donors with the complex blood mixtypical to Latin Americans.In 2000, Mr. Rivarola set out to broker a partnership of the foundation,two Brazilian organizations and the world's largest registry, DeutscheKnochenmarkspenderdatei of Germany, known as DKMS. The goal was tocreate a Brazilian bone marrow registry.But DKMS quickly concluded that it was not interested in a partnershipthat included the Max Foundation, said Claudia Rutt, its executivedirector. "The Max Foundation didn't have any experience, any computers,anything, and we were uncertain about their finances," she said. "Inever got any answers."Mr. Rivarola persuaded the Brazilians to go ahead without DKMS, and theproject collected samples from 1,061 donors during a first drive. Butthe partners had a falling-out. Now, no one has access to the donors.The foundation holds the lab work, a blood center in S=E3o Paulo holds thedonors' identities, and neither will share its information.In Peru, Dr. Victor Ulloa, an oncologist at a Lima medical school, saidthat he had tried for a year to start a Peruvian registry with Mr.Rivarola. But Mr. Rivarola, he said, had not answered e-mail or phonemessages and had failed to show up at meetings."His attitude doesn't appear to be very serious to me," Dr. Ulloa said.Last month, Ms. Freifeldt sent an e-mail message to Dr. MarceloFernandez-Vina, a prominent oncologist at Georgetown University,alerting him that his name was listed on the Max Foundation's Web site,www.themaxfoundation.org, as a member of its scientific board."I never received and signed a document for my affiliation," Dr.Fernandez-Vina responded. On his demand, his name was removed from theWeb site.Requests to speak to Mr. Rivarola went unanswered. His wife, PatriciaGarcia-Gonzalez, said the foundation was still interested in thePeruvian registry, but that the Glivec program, which she runs, hadforced it to put the discussions on hold.Of the foundation's registry efforts in general, she said,"Unfortunately, it has not been as successful as we would have liked."