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.
Cut Off From Ambulance Rides
In December 2014, Medicare began a pilot program in Pennsylvania, New Jersey, and South Carolina to require prior authorization for “repetitive, scheduled, nonemergency” ambulance rides — enforcing a long-standing Medicare policy under which beneficiaries needed to require a stretcher before Medicare would pay for the nonemergency rides. But the policy crack-down left Charles Prozzillo, and others like him, with few alternative options for transportation for medical care.
In a story for Philly.com, Kaiser Health News reporter Lisa Gillespie explores the reasoning behind the pilot program—to cut down on improper payments, including fraud and abuse—and its unfortunate consequences for patients. After Medicare stopped paying for Prozzillo’s ambulance rides to and from dialysis, his wife and daughter took turns driving him, but while getting out of the car in his driveway one day, he fell and broke a hip. He died not long after.
“There should have been another alternative for him,” his daughter says. “He would have lived longer.” CMS expanded the pilot program to the District of Columbia, Delaware, Maryland, North Carolina, Virginia, and West Virginia in 2016. While Medicaid pays for nonemergency wheelchair van transport, Medicare does not.
Racism In The Hospital
Muslim-American neurology resident Altaf Saadi learned the hard way that attending a prestigious college and medical school (Yale and Harvard, respectively) could not shield her from experiences of racism and bigotry in America. In a post for Kevin MD, Saadi, the daughter of Iraqi and Iranian immigrants, shares some of the adversity she’s faced from her own patients on the basis of her religion and ethnicity.
Some bigotry is overt, but implicit racism in health care is more commonplace, she notes, and many racial, ethnic, and religious groups are affected. “We—as physicians and society more generally—must realize that the struggles of one marginalized community are struggles of all of us,” she writes.
Setting Medical Data Free
Gaining access to your health data is supposed to usher in a revolution in health care, but currently health data is anything but free for the taking, journalist K. McGowan writes in a story for Backchannel, an in-house publication of Medium. The piece highlights several “data heroes” — a computer security expert who learned she could hack in and update the code on her pacemaker (plus other patients who want access to their implantable device’s data); a PhD student with a rare brain cancer who went on a “data-collecting adventure” following his surgery, including enrolling in a pathology class at Harvard to analyze his own brain tissue; and a mother whose son was diagnosed with a rare genetic disease after a year of medical emergencies, only to learn from medical records that doctors suspected her son had a genetic syndrome at birth (a message that was never relayed to her.)
McGowan laments that people do not truly own or control their own health data, and hints at change to come as part of initiatives such as the National Partnership for Women and Families’ Get My Health Data campaign. “If the visionaries get their way, soon you won’t have to be a programmer, a lawyer, or a programmer-lawyer to get your data; you won’t have to be desperate or stubborn,” McGowan writes. “It’ll be your natural right.”
Identifying Rare Diseases
Advanced options for genetic screening are identifying rare diseases that previously would have remained medical mysteries — but for patients, treatment options may remain limited or non-existent. In a piece for The Washington Post, Emily Mullin writes about Hannah Manning, a 13-year-old diagnosed with a gene mutation that causes an ultra-rare neurological disorder known as spinocerebellar ataxia autosomal recessive 9, or SCAR9. The diagnosis was made possible by a new type of genetic testing called next-generation sequencing, which became commercially available only in the last few years.
However, “the family soon realized there was no community of SCAR9 patients and no drugs to slow the progression of the disease,” Mullin writes. Improvements in rare disease identification are just a first step, but there is hope that as genetic screening technology advances and becomes less expensive, more patients will learn the cause of once-baffling medical conditions, the genetic causes of additional rare diseases will be identified, and approved treatments will one day follow.
In Case You Missed It
In February Narrative Matters essay, Stephanie Aleksanyan (with writer Katya Cengel) describes her brother’s long battle with drug-resistant tuberculosis. As the incidence of tuberculosis has waned, so has investment in new tests and treatments—and that may prove to be a mistake, Aleksanyan writes. The essay was also excerpted in The Washington Post.