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Shire, Bayer and Octapharma did not respond to requests for comment on their efforts to boost ties to patients. Adriane Fugh-Berman, a professor at Georgetown University Medical Center in Washington, runs PharmedOut, a project that scrutinizes the influence the drug industry has on the practice of medicine. A 2016 paper she co-authored described hemophilia’s corporate-patient links and how companies use gifts, financial opportunities and one-on-one marketing to advance their commercial interests.

Hemophilia is unique, Fugh-Berman said, since patients play a bigger role in their treatment decisions than elsewhere in medicine where doctors more often call the shots, “Industry’s relationship with individual patients or health care providers is always about selling specific targeted products,” Fugh-Berman told Reuters, adding tight corporate links to patients could hamper discussion including over drug prices, even among patient groups chicago subway token cufflinks with the best of intentions, “Taking money from industry prevents them from asking hard questions,” she said..

The National Hemophilia Foundation (NHF), like nearly all hemophilia patient groups, gets money from companies including Roche to pay for education, research and programs. But a spokesman said the group had strict rules that forbid advocating for a given product. “We are focused on ensuring patients receive access to the treatment that their physician determines to be the most appropriate,” he said by email. Michelle Rice, the NHF’s head of external affairs and the mother of a hemophilia patient, said convincing everyone in the hemophilia community to quickly switch therapies will be difficult, despite benefits promised by new drugs.

That is in part because of the disease’s tragic history, Many hemophilia patients died after acquiring HIV and hepatitis through tainted blood products in the 1980s, “We lost about 10,000 people in our community,” Rice said, “They’re not inclined to just jump to the next bright shiny thing, unless they see a real potential advantage.”, When her son was born 28 years ago, Rice said, there were just a handful of therapies available, Now, there are some two dozen approved products, with more in the pipeline as hemophilia’s potentially rich returns lure companies to pursue new chicago subway token cufflinks approaches..

France’s Sanofi (SASY.PA), which this year bought Biogen’s (BIIB.O) hemophilia business, is working with U.S.-based Alnylam (ALNY.O). Novo Nordisk has an alternative to clotting factors in the works, too. And experimental one-time gene therapies now being tested by BioMarin (BMRN.O), Spark Therapeutics (ONCE.O) and Sangamo (SGMO.O) would be very expensive, but could end indefinite infusions or injections. This could threaten reliable cash flows for clotting factor makers as well as pose a challenge to Hemlibra.

SYDNEY (Reuters) - Four global tech giants - Facebook, Apple, Alphabet and Amazon - will oppose an Australian law that would require them to provide access to private encrypted data linked to suspected illegal activities, an industry lobby group said on Wednesday, Australia in August proposed fines of up to A$10 million ($7.2 million) for institutions and prison terms for individuals who do not comply with a court request to give authorities access to private data, The government has said the proposed law is needed amid chicago subway token cufflinks a heightened risk of terror attacks..

Seen as test case as other nations explore similar laws, Facebook Inc, Alphabet Inc, Apple Inc and Amazon will jointly lobby lawmakers to amend the bill ahead of a parliamentary vote expected in a few weeks. “Any kind of attempt by interception agencies, as they are called in the bill, to create tools to weaken encryption is a huge risk to our digital security,” said Lizzie O’Shea, a spokeswoman for the Alliance for a Safe and Secure Internet. She said the four companies had confirmed their participation in the lobbying effort.

Representatives for the four firms did not immediately respond to requests for comment, A spokeswoman for Australia’s home affairs minister, who is overseeing chicago subway token cufflinks the legislation, did not immediately respond to a request for comment, If the bill becomes law, Australia would be one of the first nations to impose broad access requirements on technology companies, though others are poised to follow, The so-called Five Eyes nations, which share intelligence, said last month they would demand access to encrypted emails, text messages and voice communications through legislation..

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