By: Sara Cassidy, M.S., Ph. D.
House and Senate pass legislation to assist ALS sufferers
Both chambers passed the Steve Gleason Act of 2015 in a verbal vote on July 15th, sending the bill to the President’s desk for signing. The bill modifies Medicare provisions for people with amyotropic lateral sclerosis (ALS, A.K.A. Lou Gehrig’s Disease) to allow for the purchase of medical equipment that aids in speech generation (speech-generating devices, SGDs). ALS is a neurodegenerative disease that affects motor neurons and sufferers progressively lose the ability to move limbs and facial muscles necessary for speaking. However, cognitive abilities remain intact. SGDs are electronic systems that allow for verbal communication for individuals with severe speech impairments. The famous physicist Steven Hawking relies on an SGD for communication, for example. These devices often use gaze or eye-tracking to relay information to a computer to generate sound or written messages. The bill is named after a former New Orleans Saints football player diagnosed with ALS and was championed by legislators from Louisiana, Sen. David Vitter (R) and House Majority Whip Steve Scalise (R). Steve Gleason played with the Saints for 8 years (from 2000-2008) and famously blocked a punt in 2006 in the first game played in the Superdome after the devastation caused by Hurricane Katrina. Gleason wrote an op-ed for the Washington Post about the value his SGD gives to the remaining years of his life, and the importance of Medicare coverage of these devices for other ALS sufferers in 2014. (Cristina Marcos, The Hill)
Congressman Upton urges momentum for medical innovation legislation
Fred Upton (R-MI), chairman of the House Energy and Commerce Committee, is asking the Senate to move forward with a bill that they have been crafting in the Health, Education, Labor, and Pensions (HELP) committee that aligns with the recently passed 21st Century Cures Bill in the House. The goal is to potentially combine the bills in conference negotiations so the final product can be enacted by the end of the year. “We all know what happens in presidential years, right? Things really just sort of get gummed up,” Upton explained to an audience at the Alzheimer’s Association International Conference in Washington, D.C. “We don’t want it to be put into next year.”
The 21st Century Cures Act (H.R. 6), co-authored by Diana DeGette (D-CO), passed the House in a 344-77 vote July 10th. Upton plans to meet the Senate HELP committee chairman Lamar Alexander (R-TN) and ranking Democrat Patty Murray (D-WA) to explain the House legislation by the end of this week. “We want to just walk them through what we went through so that they don’t feel like we jammed them,” Upton said. “Do interoperability [of electronic medical records], do some FDA reform, do something that’s relevant to what we’ve done and we’ll go to conference and we’ll accept it,” he said.
The HELP committee is expected to have a medical innovations bill in September, but recent efforts have been focused on education. On July 16th, Alexander and Murray advanced their committee’s bipartisan elementary and secondary education bill (S. 1177) through the Senate by an 81-17 vote.
Upton said the goal of the Cures Bill was to get more than 300 votes on the House floor to get the attention of the Senate and prod the chamber to act. “Our goal was always 300 votes,” he mentioned in a previous interview, “344 was icing on the cake. We’ll continue to work with all of our colleagues.” However, while the bill did garner bipartisan support, 70 of the 77 unsupportive votes came from Upton’s own party. One of the dissenters, Budget Chairman Tom Price (R-GA) took issue with the $8.75 billion slated for the NIH, because it is categorized as mandatory funding and therefore not subject to budget caps. Price believes this issue could hold up the Senate’s acceptance of the bill. Notably, Sen. Richard Burr (R-NC), who authored a white paper on medical innovation with Sen. Alexander, said he supports keeping the NIH budget discretionary. “This is a discretionary program today; it should stay there,” he noted. And importantly, an amendment to the 21st Century Cures Bill, presented to the House by Dave Brat (R-VA), that would have made the NIH funds discretionary, failed in a 281-141 vote.
Funding authorized by the bill could begin as early as Oct 1st, Upton noted, if the Senate can enact legislation by then.
(Melissa Attias, CQ Roll Call; Caitlin Owens, The National Journal)
Scientists fed up with sexist overtones at Science Magazine
Science is one of the oldest and most prestigious journals in the academy. In recent years, it has branched out beyond primary scientific research to cover topics like science policy (Science Insider) and career advice for scientists (Science Careers), among others. However, some recent Science publications have proponents of diversity up in arms; so much so that Aradhna Tripati, Jennifer Glass, and Lenny Teytelman authored an open letter to Science (signed by more than 300 scientists) urging its editors to use their influence in the scientific community for the promotion of diversity in science, instead of elevating outdated gender stereotypes typified by the offending posts.
The first offense listed by the letter’s authors was in June 2014. That month, one cover of the weekly Science Magazine was a photo of transgender sex workers in Jakarta whose heads were cropped out of the image. According to Retraction Watch, which was given permission to publish excerpts of the letter, “The cover photo of headless transgender sex workers of color with the caption ‘Staying a step ahead of HIV/AIDS’ fed into stereotypes associating prostitution and HIV/AIDS with three underrepresented communities – women, people of color and the transgender community – along with its general harmful representation of disembodied female bodies”, the authors note. In July of that month Science editor Marcia McNutt did add an addendum to the webpage displaying that cover apologizing for the offense. Congresswomen Jackie Speier (D-CA) also weighed in on the photo, “The use of headless, sexualized women of color on the cover of the most prestigious science publication in the United States sends the message that women and minorities still do not fully belong in the ‘boy’s club’ of science.”
On June 1st, 2015, a post-doc wrote to a Science Careers advice column penned by virologist Alice Huang (Senior Faculty Associate, CalTech) complaining that her new male advisor constantly stares down her blouse. Dr. Huang effectively told her to grin and bear it. To their credit, Science Careers retracted the article within hours, however her advice drew immediate attention from the Internet and was cited by the Washington Post, among others.
The final straw came earlier this month, when Science Careers published an article by Dr. Eleftherios Diamandis, wherein his advice on how to “make it” in academic science involved passing off all domestic responsibilities to your wife in favor of working excessively long hours. “I worked 16 to 17 hours a day, not just to make progress on the technology but also to publish our results in high-impact journals. How did I manage it? My wife—also a Ph.D. scientist—worked far less than I did; she took on the bulk of the domestic responsibilities. Our children spent many Saturdays and some Sundays playing in the company lobby. We made lunch in the break room microwave,” he wrote. And while some commenters at Inside Higher Ed were unfazed by this advice, others are fed up. Janet Stemwedel (associate professor at San Jose State University) told Retraction Watch, “My big issue with the Science Careers career advice/exemplars of people succeeding that are clearly meant to convey something advice-like is how mired they are in a status quo that many of us have been trying to dismantle for (what feels like) forever. Advisor who views you as a pair of boobs rather than a fully human future colleague? Grin and bear it! Need to make an impression to get noticed in your field? Work an unhealthy number of hours and foist the (unpaid/undervalued) domestic and emotional work on your wife! Tips on how to make it assume that nothing’s going to get better — and indeed, they give people following them no reason to work to change the system to make it any better.”
Science Careers published an apology penned by Marcia McNutt, July 16th, acknowledging some mistakes but also asserting their commitment to promoting diversity in science. (Retraction Watch, Rachel Feltmen, Washington Post)
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