A few weeks ago, I saw a young patient who was suffering from an ear infection. It was his fourth visit in eight weeks, as the infection had proven resistant to an escalating series of antibiotics prescribed so far. It was time to bring out a heavier hitter. I prescribed Ciprofloxacin, an antibiotic rarely used in pediatrics, yet effective for some drug-resistant pediatric infections.
The patient was on the state Medicaid insurance and required a so-called prior authorization, or PA, for Ciprofloxacin. Consisting of additional paperwork that physicians are required to fill out before pharmacists can fill prescriptions for certain drugs, PAs boil down to yet another cost-cutting measure implemented by insurers to stand between patients and certain costly drugs.
The PA process usually takes from 48-72 hours, and it’s not infrequent for requests to be denied, even when the physician has demonstrated an undeniable medical need for the drug in question.
Last week, Facebook’s unprecedented stock price collapse triggered by concerns over personal data privacy, as well as same-day commentary regarding GlaxoSmithKline’s investment in 23andMe to gain access to its customers’ genomic data, reignited a national dialogue vis-à-vis our rights to our data, especially our health data. Three years ago, our nation’s first National Coordinator for Health IT foresaw an impending “gold rush” for valuable personal health data. Myriad headlines such as Bloomberg’s “IBM Buying Truven for $2.6 Billion to Amass More Health Data” proved him right and fueled this national dialogue.
However, there has been far less discussion about the flip-side of this coin: accessibility of knowledge gleaned from people’s data, by the people whose experiences contributed to its development and the people who need it to save lives. Policymakers have noted that, “We must develop a communications system so that the miraculous triumphs of modern science can be taken from the laboratory and transmitted to all in need.” Unfortunately, that statement, attributed to Senator Lister Hill and inscribed on a wall inside the U.S. National Library of Medicine (the world’s largest biomedical library), was made in 1965! That predates by a year Dr. Martin Luther King Jr.’s observation that, “Of all the forms of inequality, injustice in health is the most shocking and inhuman.” Indeed, inequitable access to knowledge, resulting from society’s failure to realize Senator Hill’s vision over half a century later, exacerbates such injustices while costing lives.