Visit The Boston Globe Share on Twitter Share on Facebook Comment on this Scroll to top of page By Eric Boodman STAT May 14, 2018 The meeting could determine whether the two siblings would keep going blind. The doctor knew that going in, but he was feeling good. He had negotiated huge discounts before, allowing patients to get complex surgeries or budget-busting drugs they otherwise couldn’t afford. And his last two conversations with Spark Therapeutics had been promising.Then again, at $850,000 a person, Luxturna was more budget-busting than most.Spark had proposed a few different ways of helping insurers to cover the gene therapy — but Dr. Kevin Strauss’s patients tend not to have insurance. As medical director of the Clinic for Special Children, in Strasburg, Pa., he mostly sees members of the Plain community: Old Order Amish and Mennonite families, who believe that caring for the sick is a community’s responsibility. Relying on … [Read more...] about Pennsylvania’s Amish community is caught in a bind over expensive gene therapy
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How giving food away saved a Maine restaurant
Visit The Boston Globe Share on Twitter Share on Facebook Comment on this Scroll to top of page By Meadow Rue Merrill April 04, 2018 Get the best of the magazine’s award-winning stories and features right in your e-mail inbox every Sunday. Sign up here. ON A SUNSHINY AFTERNOON last spring, folks line up 30 deep outside The Red Barn, an iconic restaurant in Augusta, Maine, along US Route 201, which connects the state capital to the countryside. Inside the kitchen, a burger, hot dog, or haddock fillet hits the grill every six seconds. Customers’ names blare over the loudspeaker as trays heaped with fried seafood and sandwiches slide across the takeout counter. “Right here, Joe! Finn! Dory, you can pick up at the window. Ron, your food is ready.” As the sing-song list wafts over the parking lot along with the salty smell of french fries, The Red Barn’s owner and self-proclaimed “chicken joint gal,” Laura Benedict, winds through … [Read more...] about How giving food away saved a Maine restaurant
A 50-day action plan for those late to Y2K
Okay, you blew it. You ignored Y2K until now. With the ads on television for a movie about Y2K, not to mention that you're reading about Y2K fears impacting the stock market, you're wondering if you need to take action now. What do you do? What do you do? Relax, following the simple steps in this article will prepare you and your family for Y2K. First, let's take a moment to eliminate all the unfounded fears. Look around. See the television, the telephone, the VCR, the alarm clock, and the microwave? They will work on January 1, 2000. See ZDY2K's FAQ area for detailed explanations, or just read on for a summary. These devices do not use the date for any functional processes. The television will operate fine. The telephone will have dial tone at the New Year - most remaining problem in the phone system are at small independent local exchange operators, and errors will likely affect billing rather than service. If you get an absurdly high bill after the New Year, contest it. A very few … [Read more...] about A 50-day action plan for those late to Y2K
Social media privacy: Insurance companies want access to your Facebook
Any town U.S.A. You walk into a store and notice someone you recognize, from Facebook. But you really don't know the individual; only online have you "met" that person. You have shared a note, or played a game on Facebook, Myspace, or other media website. You can choose to say hello or ignore them. That choice is up to you. Sometime in the future, you wind up in a car accident and suffer physical injuries that you decide can be claimed in a lawsuit against the insurance company. Now your friends on Facebook may not have any choice of getting to know you up close and in person. You may not even be aware that they are being questioned. Insurance companies are beginning to demand access to information about you and they do not want your explicit consent. In a Globe and Mail report, the insurance industry wants to use sites such as Facebook to collect and use background information collected to contradict any evidence you have used in your claim for damages. The first thing the … [Read more...] about Social media privacy: Insurance companies want access to your Facebook
Meet NationBuilder, the mercenary software that powered Trump and Brexit
What do the Brexit campaign and Donald Trump’s ascent to the position of U.S. president have in common? They were both facilitated by a piece of software called NationBuilder.NationBuilder is “leadership software” that brings together features from services like MailChimp, WordPress, and PayPal into one package. According to company co-founder and CEO Jim Gilliam, who spoke to Digital Trends earlier this month, “the reality is that just about everyone in politics is using NationBuilder in some way.”This apparently ubiquitous software has already played a role in two prominent public votes that produced incredibly divisive outcomes. While critics might attack Gilliam’s software because of the campaigns that used it, NationBuilder is a double-edged sword, and an example of the high-tech tools that modern politicians are learning to harness.Email blastOn June 16, 2015, Donald Trump officially announced his intention to run for U.S. president in 2016. … [Read more...] about Meet NationBuilder, the mercenary software that powered Trump and Brexit
Awesome tech you can’t buy yet: Webcam covers and one-handed shoelaces
At any given moment, there are approximately a zillion crowdfunding campaigns on the web. Take a visual stroll through Kickstarter or Indiegogo, and you’ll find no shortage of weird, useless, and downright stupid projects out there — alongside some real gems. In this column, we cut through all the worthless wearables and Oculus Rift ripoffs to round up the week’s most unusual, ambitious, and exciting projects. But don’t grab your wallet just yet. Keep in mind that any crowdfunded project can fail — even the most well-intentioned. Do your homework before cutting a check for the gadget of your dreams.QuickShoeLaces — One-handed shoe lacing systemOver the years, countless designers have tried to come up with a suitable alternative to the traditional shoe lacing system, but very few have gained widespread popularity. There are Velcro straps, coiler laces, Zubits, Klots, and Nike even makes a set that will automatically tighen around your foot when … [Read more...] about Awesome tech you can’t buy yet: Webcam covers and one-handed shoelaces