Narrative Matters: On Our Reading List

Editor's note: "Narrative Matters: On Our Reading List" is a monthly roundup where we share some of the most compelling health care narratives driving the news and conversation in recent weeks.

Disability In STEM

Jesse Shanahan, a master's student in astronomy at Wesleyan University, has a physical disability. That makes her rare among students in the STEM (Science, Technology, Engineering, and Math) fields, where only 9 percent to 10 percent of undergraduates, and only 1 percent of Ph.D. recipients, in the United States have disabilities.

Beyond the physical barriers she faces—like inaccessible buildings—she also faces hostility from other scientists and some professors who chalk her need for flexible deadlines and breaks during tests up to "laziness." Shanahan writes about her unfortunate, and not uncommon, experiences in "Disability is not a disqualification," in a recent issue of Science. Despite the challenges, and fears for her future in the sciences, where long hours, stress, and pressure are the status quo, Shanahan is driven by the prospect of making astronomy more accessible.

Caring For Paris' Victims

Before the headlines broke about the November 13 terrorist attacks in Paris, the victims began to arrive at Hôpital Saint Louis, some walking into the emergency department on foot, and others brought in by bystanders. Saint Louis is a specialized hospital, with an emergency department, but no trauma center, yet it was closest to the restaurants and concert hall that were among the sites of the attacks that stunned Paris, and the rest of the world, that night.

In a piece for The New England Journal of Medicine, correspondent Charlotte J. Huag tells the story of that night at Hôpital Saint Louis and elsewhere in Paris, through interviews with the physicians, surgeons, and health administrators who coordinated the care of so many after the attacks. The piece is a testament to the importance of emergency preparation, and the heroism of the health profession in the worst of circumstances.

The Citizen Scientist

In a captivating read making its rounds on the Internet, sports science writer David Epstein, of ProPublica, tells the story of a woman who helped diagnose her own rare, genetic disease — and that of a pro athlete in the process.

In "The DIY Scientist, the Olympian, and the Mutated Gene," a story co-produced with NPR's This American Life, an Iowa mother named Jill Viles enlists Epstein's help in connecting with Canadian Olympic medalist Priscilla Lopes-Schliep. She sent a collection of her research, including side-by-side photos of Viles, who has legs and arms so thin they look non-functional, and Lopes-Schliep, whose large, defined muscles had sparked rumors of steroid use throughout her track and field career. Epstein's long read highlights the power of the "citizen scientist" to revolutionize not only their own care, but medicine itself, even in the face of skeptical experts. It is a reminder to view the democratization of medical information not as annoyance for doctors, but as a means to enrich health care and research for everyone.

Clinical Trial Transparency

When the results of a clinical trial go unpublished, that could be cause for concern — or at least unrequited curiosity on the part of the scientific community. But more troubling is never learning the results of a trial involving an investigational medical device that was implanted inside you.

Emma Yasinski writes in The Atlantic about clinical trial transparency, and a trial she participated in as a child after being diagnosed with an atrial-septal defect, "a hole in the heart that sends blood flowing the wrong way." Instead of open-heart surgery, Yasinski's parents opted for the investigational device: a small, metal mesh umbrella delivered via catheter to cover the hole in the heart until Emma's cells grew over it. Initial follow-up appointments brought no bad news.

Then, "after four years, my mother scheduled another checkup — but this time, doctors told her that the trial was over, and that I wouldn't be having any more follow-up appointments," Yasinski writes. "I haven't had an ultrasound since, and to this day, I've never seen the results of the trial." At least nine different devices have been approved for this indication, but Yasinski will never know whether one of them is the brand implanted in her heart.

Fetal Alcohol Syndrome

The dangerous consequences of drinking alcohol while pregnant are now known. But when Kathy Mitchell was a pregnant teenager in the 1970s, she was unaware of the effect her alcoholism would have on her unborn child. In The Washington Post, Alexandra Rockey Fleming tells the story of Kathy and her daughter Karli, now 43, who has fetal alcohol syndrome and the developmental age of a first-grader. "Not a day goes by that I don't ask myself, 'What if? What if alcohol hadn't been a part of my life?'" Kathy Mitchell says.

Abortion Stories

Forty-three years after the landmark Supreme Court decision in Roe v. Wade, which disallowed many state and federal restrictions on abortion, the Supreme Court will hear a new case on abortion, Women's Health v. Cole, which concerns restrictions passed in 2013 on clinics and physicians who provide abortions in Texas. Briefs were filed in support of either side of the case, including one brief representing more than a hundred women in the legal profession who have had an abortion.

In response, The Atlantic asked willing readers to share their personal stories of abortion, "either in choosing to have one or not, or perhaps anticipating that decision." Several have been posted on the Atlantic's Notes page, prompting an impassioned discussion among readers. Elsewhere on the internet, Karen Hartman shares her abortion story (on The Washington Post), and celebrities narrate the abortion stories of American women (linked to on Jezebel).

A Mother's Disability

According to a 2012 investigation published by the National Council on Disability, 37 states still allow a person's parental rights to be terminated on the basis of a disability. Removal rates for parents with intellectual disabilities is reportedly as high as 80 percent, the publication also notes.

In "Who Knows Best," which appears this month in New York Magazine, Lisa Miller tells the story of Sara Gordon, a young woman with an intellectual disability who lost custody of her baby shortly after giving birth — and fought hard to get her back. The piece, and the legal and administrative institutions involved in the Gordons' case, grapple with a difficult question: "how smart do you have to be to raise a child?" In January 2015, the Departments of Justice and Health and Human Services determined that the Massachusetts Department of Children and Families had committed "extensive, ongoing violations" of the Americans With Disabilities Act in the case of Sara Gordon, and the child is now back in the custody and care of her mother and grandparents.

In case you missed it

In the January Narrative Matters essay, by Mairead Eastin Moloney, a patient with Lyme disease-like symptoms struggles to find a specialist who understands her condition.

from Health Affairs Blog http://ift.tt/1OS8emZ