An anonymous reader shares an article: There are 7,000 rare diseases affecting 25 million to 30 million Americans. The average drug approved under the Orphan Drug Act of 1983 (ODA), which governs rare disease approval, costs $118,820 per year. Assuming a similar cost, if a single drug were approved under the ODA for 10% of rare diseases, the total would exceed $350 billion annually -- more than 10 percent of the total amount that America spends on health care and much more than the health care costs attributable to either diabetes or Alzheimer's disease and other forms of dementia. If this seems far-fetched, consider the two drugs for treating Duchenne muscular dystrophy that the FDA approved in the last six months: eteplirsen, which is sold by Sarepta Therapeutics and costs $300,000 annually per patient, and deflazacort, which is sold by Marathon Pharmaceuticals and costs $89,000 annually per patient. However, approval of such costly drugs exposes an uncomfortable truth: scientific discovery has outpaced health care economics. [...] In the United Kingdom, the National Institute for Health and Care Excellence (NICE) determines the cost effectiveness, or value, of newly approved drugs based on their impact on quality-adjusted life years. These determinations inform the National Health System's (NHS) treatment-coverage decisions. In contrast, the FDA is prohibited from considering cost or value in its decision making, and there is no U.S. governmental equivalent of NICE.

Google is calling on fact-checking organizations to help it bust fake news -- but it's starting in a small way. From a report: Google's Fact Check feature is not new, but today the search giant is rolling out the feature around the world. A global rollout is important if such a tool is to have any real impact. It's all well and good have reports fact-checked on one side of the world, but it's of little use if the same fake stories remain unquestioned and untested elsewhere. Google is doing its part by making the Fact Check label available in Google News everywhere, and spreading it into search results in all languages as well. The Fact Check label has been around since October, providing an at-a-glance way to determine whether or not a particular story has been verified as true. Google admits that it will not be possible to fact-check every single search result it displays, and the company points out that it is not responsible for the actual fact-checking process.

An anonymous reader quotes a report from The Verge: According to Twitter's suit, filed today in Northern California District Court, U.S. Customs and Border Protection has attempted to use a "limited-purpose investigatory tool" to unmask the owner of the Twitter account "@ALT_USCIS." The account, one of several "alt" or "rogue" government accounts that appeared in the wake of Trump's ascent to the presidency, was used "to express public criticism of the Department and the current Administration," according to Twitter's complaint. In the suit, Twitter writes that @ALT_USCIS has purported to be a dissenting member of U.S. Citizenship and Immigration Services. On March 14, Twitter received a summons from Customs requesting records that could reveal the identity of the account's operator, including IP logs and any associated phone number or mailing address. In addition to the Department of Homeland Security and its subagency, the lawsuit names four individuals as defendants: DHS secretary John Kelly, acting CBP commissioner Kevin McAleenan, and special agents Stephen P. Caruso and Adam Hoffman, who issued and served the order itself.

Top presidential strategist Steve Bannon has been booted from the National Security Council amid a reshuffling of the key panel, Bloomberg reports Wednesday morning. President Donald Trump reorganized the council, removing Bannon and downgrading the role of his homeland security adviser, Tom Bossert, the report added, citing multiple sources. From the report: Bannon, the former executive chairman of Breitbart News, was elevated to the National Security Council's principals committee at the beginning of Trump's presidency. The move drew criticism from some members of Congress and Washington's foreign policy establishment. A White House official said that Bannon was placed on the committee in part to monitor Trump's first national security adviser, Michael Flynn, and never attended a meeting. He's no longer needed with McMaster in charge of the council, the official said. Trump fired Flynn on Feb. 13 for not disclosing to the president or to Vice President Mike Pence the extent of his conversations with Russia's ambassador to the U.S., Sergey Kislyak, before Trump's inauguration.

According to Reuters, the FCC has voted on Monday to reverse a requirement imposed under the Obama administration that Charter extend broadband service to 1 million households already served by a competitor. From the report: As a condition of approval for its acquisition of two cable companies, Charter had agreed in May 2016 to extend high-speed internet access to 2 million customers within five years, with 1 million served by a broadband competitor. The decision was a win for a group representing smaller cable companies that sought to overturn the "overbuild" requirement and marked the latest reversal of Obama-era requirements by the new Republican-led FCC under President Donald Trump. Under the new order, Charter, the No. 2 U.S. cable company with 26 million residential and business customers in 41 states, must add service to 2 million additional potential subscribers in places without existing service, FCC spokesperson Mark Wigfield said. Supporters say the move ensures that more people without access to high-speed broadband, especially in some rural and urban areas, will have an option.

"This year's round of H-1B visa program applications was scheduled to launch Monday, and it was largely absent of President Donald Trump's proposed policy changes," writes Newsweek. An anonymous reader quotes their report: The U.S. Citizenship and Immigration Services last updated its online page dedicated to the program, which granted visas to skilled foreign workers, Wednesday with the rules mostly similar to those of last year and quotas remaining the same. These requirements were set to launch despite Trump's vow to reform the program on the grounds that companies exploited it to fill jobs once held by U.S. citizens who earned higher wages.

An alleged draft of an executive order was leaked last month and widely circulated, raising fears that the administration was preparing to gut the program. These measures were never announced. "There was a window in which the White House could have made serious reforms," Russ Harrison, head of government relations for the Institute of Electrical and Electronics Engineers-USA, told The Wall Street Journal. "For whatever reason, they decided not to take it."

An anonymous reader quotes a report from Fierce Telecom: During a press event yesterday, White House spokesman Sean Spicer said that next up on President Trump's telecom agenda is to roll back the FCC's 2015 Open Internet net neutrality rules. However, according to some reports, that might not happen as quickly as Congress' recent move to rescind rules that prevented internet service providers from selling users' data. As noted by the New York Times, Spicer said that President Trump had "pledged to reverse this overreach" created by net neutrality. He said the FCC's net neutrality rules, passed in 2015, are an example of "bureaucrats in Washington" placing unfair restrictions on internet service providers, essentially "picking winners and losers" in the telecom market. In comments aimed at the wider telecom market, Spicer said Trump will "continue to fight Washington red tape that stifles American innovation, job creation and economic growth." However, as the NYT reports, the process to repeal net neutrality likely won't follow the same procedure as Congress' recent vote to remove broadband privacy rules -- since those rules were only a year old, Congress was able to use the Congressional Review Act to move forward with its action. The FCC's net neutrality rules, however, are more than two years old and so can't be reviewed by that same act. Thus, it may fall on newly installed FCC Chairman Ajit Pai to rescind the FCC's Open Internet rules, which he voted against when he was a commissioner at the agency under former chief Tom Wheeler.

Comcast, Verizon, AT&T Inc said Friday they would not sell customers' individual internet browsing information, days after the U.S. Congress approved legislation reversing Obama administration era internet privacy rules. From a report on Reuters: The bill would repeal regulations adopted in October by the Federal Communications Commission under former President Barack Obama requiring internet service providers to do more to protect customers' privacy than websites like Alphabet's Google or Facebook. The easing of restrictions has sparked growing anger on social media sites. "We do not sell our broadband customers' individual web browsing history. We did not do it before the FCC's rules were adopted, and we have no plans to do so," said Gerard Lewis, Comcast's chief privacy officer. He added Comcast is revising its privacy policy to make more clear that "we do not sell our customers' individual web browsing information to third parties." Verizon does not sell personal web browsing histories and has no plans to do so in the future, said spokesman Richard Young.

From an article on The Outline: Since 2009, Twitter has added a blue checkmark symbol to certain accounts that have been deemed "verified," which means "that an account of public interest is authentic," according to Twitter. For some, the verified distinction is coveted. For others, it's become a dirty word. "Verifieds" or "blue checks" are the elite, the establishment. Since many members of the media are verified, they have also become associated, for some, with the perceived liberal bias of the fourth estate. Conservatives, alt-righters, and Donald Trump fans have noticed that when Trump tweets, there is invariably a flood of "blue check liberals" responding in a negative way. There is also the perception that Twitter, a California company, is biased toward liberals. Also, according to Twitter, there are now about 250,000 people who're verified on the site, some of which are for unknown reasons.

schwit1 quotes a report from Associated Press: House Republicans are taking aim at the Environmental Protection Agency, targeting the way officials use science to develop new regulations. A bill approved Wednesday by the GOP-controlled House would require that data used to support new regulations to protect human health and the environment be released to the public. Rep. Lamar Smith, R-Texas, said "the days of 'trust me' science are over," adding that the House bill would restore confidence in the EPA's decision-making process. Connecticut Rep. Elizabeth Esty and other Democrats said the bill would cripple EPA's ability to conduct scientific research based on confidential medical information and risks privacy violations by exposing sensitive patient data. The bill was approved 228-194 and now goes to the Senate. According to The Hill, "The bill would also require that any scientific studies be replicable, and allow anyone who signs a confidentiality agreement to view redacted personal or trade information in data."

From a CNET report: A VPN redirects your internet traffic, disguising where your computer, phone or other device is when it makes contact with websites. It also encrypts information you send across the internet, making it unreadable to anyone who intercepts your traffic. That includes your internet service provider. Ha! Problem solved -- right? Well, sort of. The big catch is, now the VPN has your internet traffic and browsing history, instead of your ISP. What's to stop the VPN from selling your information to the highest bidder? Of course, there are reputable VPN services out there, but it's incumbent on you the user to "do your homework," Ajay Arora, CEO of cybersecurity company Vera said. In addition to making sure the VPN will actually keep your data private, you'll want to make sure there's nothing shady in the terms and conditions. Shady how? Well, in 2015, a group of security-minded coders discovered that free VPN service Hola was selling its users' bandwidth to the paying customers of its Luminati service. That meant some random person could have been using your internet connection to do something illegal. So, shady like that. "I would recommend you do some cursory level research in terms of reputation [and] how long they've been around," Arora said, "And when you sign up, read the fine print." From a report on Wired: Christian Haschek, an Austria-based security researcher, wrote a script that analyzed 443 open proxies, which route web traffic through an alternate, often pseudo-anonymous, computer network. The script tested the proxies to see if they modified site content or allowed users to browse sites while using encryption. According to Haschek's research, just 21 percent of the tested proxies weren't "shady." Haschek found that the other 79 percent of surveyed proxy services forbid secure, HTTPS traffic.

An anonymous reader writes: It started with the Boston marathon bombing, four years ago. University of Washington professor Kate Starbird was sifting through thousands of tweets sent in the aftermath and noticed something strange. Too strange for a university professor to take seriously. "There was a significant volume of social-media traffic that blamed the Navy SEALs for the bombing," Starbird told me the other day in her office. "It was real tinfoil-hat stuff. So we ignored it." Same thing after the mass shooting that killed nine at Umpqua Community College in Oregon: a burst of social-media activity calling the massacre a fake, a stage play by "crisis actors" for political purposes. "After every mass shooting, dozens of them, there would be these strange clusters of activity," Starbird says. "It was so fringe we kind of laughed at it. "That was a terrible mistake. We should have been studying it." Starbird argues in a new paper, set to be presented at a computational social-science conference in May, that these "strange clusters" of wild conspiracy talk, when mapped, point to an emerging alternative media ecosystem on the web of surprising power and reach. There are dozens of conspiracy-propagating websites such as beforeitsnews.com, nodisinfo.com and veteranstoday.com. Starbird cataloged 81 of them, linked through a huge community of interest connected by shared followers on Twitter, with many of the tweets replicated by automated bots. Starbird is in the UW's Department of Human Centered Design & Engineering -- the study of the ways people and technology interact. Her team analyzed 58 million tweets sent after mass shootings during a 10-month period. They searched for terms such as "false flag" and "crisis actor," web slang meaning a shooting is not what the government or the traditional media is reporting it to be. Then she analyzed the content of each site to try to answer the question: Just what is this alternative media ecosystem saying? Starbird is publishing her paper as a sort of warning. The information networks we've built are almost perfectly designed to exploit psychological vulnerabilities to rumor. "Your brain tells you 'Hey, I got this from three different sources,'" Starbird says. "But you don't realize it all traces back to the same place, and might have even reached you via bots posing as real people. If we think of this as a virus, I wouldn't know how to vaccinate for it." The report goes on to say that "Starbird says she's concluded, provocatively, that we may be headed toward 'the menace of unreality -- which is that nobody believes anything anymore.'"

theodp writes: Speaking about women in STEM at a Women's History Month event at the Smithsonian National Air and Space Museum, new [unpaid] federal employee Ivanka Trump revealed she'll be taking a computer coding class with her 5-year-old daughter. "On a very personal level, as a mom I'm trying to do my part as well," Ivanka told the crowd. "My daughter Arabella and I are enrolling in a coding class this summer." Parroting supermodel Karlie Kloss (the girlfriend of Ivanka's brother-in-law), the first daughter added, "We're excited to learn this incredibly important new language together. Coding truly is the language of the future."

FCC Chairman Ajit Pai announced today that the FCC will be "dropping its legal defense of a new system for expanding broadband subsidies for poor people, and will not approve applications from companies that want to offer the low-income broadband service," reports Ars Technica. The Lifeline program, which has been around for 32 years and "gives poor people $9.25 a month toward communications services," was voted to be expanded last year under FCC Chairman Tom Wheeler. That expansion will now be halted. Ars Technica reports: Pai's decision won't prevent Lifeline subsidies from being used toward broadband, but it will make it harder for ISPs to gain approval to sell the subsidized plans. Last year's decision enabled the FCC to approve new Lifeline Broadband Providers nationwide so that ISPs would not have to seek approval from each state's government. Nine providers were approved under the new system late in former FCC Chairman Tom Wheeler's term, but Pai rescinded those approvals in February. There are 36 pending applications from ISPs before the commission's Wireline Competition Bureau. However, Pai wrote today, "I do not believe that the Bureau should approve these applications." He argues that only state governments have authority from Congress to approve such applications. When defending his decision to revoke Lifeline approvals for the nine companies, Pai said last month that more than 900 Lifeline providers were not affected. But most of those were apparently offering subsidized telephone service only and not subsidized broadband. Currently, more than 3.5 million Americans are receiving subsidized broadband through Lifeline from 259 eligible providers, Pai said in today's statement. About 99.6 percent of Americans who get subsidized broadband through Lifeline buy it from one of the companies that received certification "through a lawful process," Pai wrote. The remaining 0.4 percent apparently need to switch providers or lose service because of Pai's February decision. Only one ISP had already started providing the subsidized service under the new approval, and it was ordered to notify its customers that they can no longer receive Lifeline discounts. Pai's latest action would prevent new providers from gaining certification in multiple states at once, forcing them to go through each state's approval process separately. Existing providers that want to expand to multiple states would have to complete the same state-by-state process.

On Tuesday, Congress sent proposed legislation to President Trump that wipes away landmark online privacy protections. In a party-line vote, House Republicans freed Internet service providers such as AT&T, Verizon, and Comcast of protections approved just last year that had sought to limit what companies could do with information such as customer browsing habits, app usage history, location data and Social Security numbers. Now call it a poetic justice, online privacy activist Adam McElhaney has launched an initiative called Search Internet History, with an objective of raising funds to buy browsing history of each politician and official who voted in favor of S.J.Res 34. On the site, he has also put up a poll asking people whose internet history they would like to see first.

Update: The campaign, which was seeking $10,000, has already raised over $55,000.

An anonymous reader shares a BBC report: Britain's departure from the European Union is "an historic moment from which there can be no turning back," Theresa May has told MPs. The prime minister said it was a "unique opportunity" to "shape a brighter future" for the UK. She was speaking after Britain's EU ambassador formally triggered the two year countdown to the UK's exit by handing over a letter in Brussels. It follows June's referendum which resulted in a vote to leave the EU. In a statement in the Commons, the prime minister said: "Today the government acts on the democratic will of the British people and it acts too on the clear and convincing position of this House." She added: "The Article 50 process is now under way and in accordance with the wishes of the British people the United Kingdom is leaving the European Union."

An anonymous reader quotes a report from The Register: The U.S. House of Representatives has just approved a "congressional disapproval" vote of privacy rules, which gives your ISP the right to sell your internet history to the highest bidder. The measure passed by 232 votes to 184 along party lines, with one Democrat voting in favor and 14 not voting. This follows the same vote in the Senate last week. Just prior to the vote, a White House spokesman said the president supported the bill, meaning that the decision will soon become law. This approval means that whoever you pay to provide you with internet access -- Comcast, AT&T, Time Warner Cable, etc -- will be able to sell everything they know about your use of the internet to third parties without requiring your approval and without even informing you. That information can be used to build a very detailed picture of who you are: what your political and sexual leanings are; whether you have kids; when you are at home; whether you have any medical conditions; and so on -- a thousand different data points that, if they have sufficient value to companies willing to pay for them, will soon be traded without your knowledge. With over 100 million households online in the United States, that means Congress has just given Big Cable an annual payday of between $35 billion and $70 billion.

Facebook has officially launched their "Town Hall" feature that allows users to locate, follow and contact their local, state and federal government representatives. The social media company also announced that they will be launching local election reminders in an effort to get more users to vote in state, county, and municipal elections. TechCrunch reports: The feature was recently made available in the "More" menu on mobile and on desktop to a subset of users. When you launch it, you would be presented with a list of reps at the local, state and federal level, and you could click to visit their Facebook page or send them a message, call them, or email. Not all reps offer their contact information via Facebook, however. And Facebook doesn't yet pull in the missing phone numbers or emails from off-site sources, like official government websites, for example. The company tell us that's something it wants to address in time, though. Today, Town Hall is available to all U.S. Facebook users and some of its features will now be integrated in the News Feed. If you like or comment on a post made by one of your elected officials, a new feature below the comments will invite you to call, message or email the rep. After doing so, users will then be prompted to share a post saying that they contacted the rep, as a means of encouraging their friends to do the same. Facebook says that this Contact Your Rep post is not shown to everyone, but only to those who are also already engaging with an elected official's post, through a like or comment. Additionally, Facebook says it will now offer Election Reminders for local elections. The new, local election reminders will appear for all state, county, and municipal elections in the U.S. in areas with a population of over 10,000 people, and will include both primaries and general elections.

Friday the Trump administration suffered a political setback when divisions in the president's party halted a move to repeal healthcare policies passed in 2010. But if Trump hopes to turn his attention to how America's H-1B visa program is affecting technology workers, "time is running out," writes Slashdot reader pteddy. Bloomberg reports: [T]he application deadline for the most controversial visa program is the first week of April, which means new rules have to be in place for that batch of applicants or another year's worth of visas will be handed out under the existing guidelines... There probably isn't enough time to pass legislation on such a contentious issue. But Trump could sign an executive order with some changes. The article points out that under the current system, one outsourcing firm was granted 6.5 times as many U.S. visas as Amazon. There's also an interesting map showing which countries' workers received the most H-1B visas in 2015 -- 69.4% went to workers in India, with another 10.5% going to China -- and a chart showing which positions are most in demand, indicating that two-thirds of the visa applications are for tech workers.

An anonymous reader quotes a report from Ars Technica: If the U.S. adopts a "dig once" policy, construction workers would install conduits just about any time they build new roads and sidewalks or upgrade existing ones. These conduits are plastic pipes that can house fiber cables. The conduits might be empty when installed, but their presence makes it a lot cheaper and easier to install fiber later, after the road construction is finished. The idea is an old one. U.S. Rep. Anna Eshoo (D-Calif.) has been proposing dig once legislation since 2009, and it has widespread support from broadband-focused consumer advocacy groups. It has never made it all the way through Congress, but it has bipartisan backing from lawmakers who often disagree on the most controversial broadband policy questions, such as net neutrality and municipal broadband. It even got a boost from Rep. Marsha Blackburn (R-Tenn.), who has frequently clashed with Democrats and consumer advocacy groups over broadband -- her "Internet Freedom Act" would wipe out the Federal Communications Commission's net neutrality rules, and she supports state laws that restrict growth of municipal broadband. Blackburn, chair of the House Communications and Technology Subcommittee, put Eshoo's dig once legislation on the agenda for a hearing she held yesterday on broadband deployment and infrastructure. Blackburn's opening statement (PDF) said that dig once is among the policies she's considering to "facilitate the deployment of communications infrastructure." But her statement did not specifically endorse Eshoo's dig once proposal, which was presented only as a discussion draft with no vote scheduled. The subcommittee also considered a discussion draft that would "creat[e] an inventory of federal assets that can be used to attach or install broadband infrastructure." Dig once legislation received specific support from Commerce Committee Chairman Greg Walden (R-Ore.), who said that he is "glad to see Ms. Eshoo's 'Dig Once' bill has made a return this Congress. I think that this is smart policy and will help spur broadband deployment across the country."