Tens of thousands of children conceived by donors are grown up now and wondering who their fathers are. Advances in DNA testing are helping them find out
Alfie Evans died on April 28 at 23 months old, and the British boy’s case has reopened old questions: Who has the right to veto further care? What happens where conflicts of interest arise, as when Terri Schiavo’s husband fought to withhold water and nutrition while living with another woman and standing to inherit over $700,000 from his wife’s medical trust fund? And most fundamentally: What is life, or quality of life?
“Life” is easy to define intuitively, but more challenging to define for patients whose ailments primarily affect the brain. If life depends on self-awareness, are people with Alzheimer’s, or who are mentally ill and suffer from delusions, dead? If it depends on the ability to perform given “activities of daily living”—or any activities of daily living at all—are those with disabilities dead?
In 1968, bioethicist Henry Beecher’s committee published its proposed answers to those questions in the Journal of the American Medical Association, focusing on “irreversible destruction of the brain” as equivalent to death. The committee gave two reasons for its answer: first, to relieve the financial and social burden of care it viewed as futile, and second, to address controversies about obtaining organs for transplant. A New Yorker article states that an earlier draft spoke more bluntly: “There is great need for the tissues and organs of the hopelessly comatose in order to restore to health those who are still salvageable.”
Such attitudes have long made the organ-procurement world both hero and villain to some, and the same article quoted Peter Singer—the Princeton bioethics professor who has attempted to justify infanticide—as stating that brain death is “a concept so desirable in its consequences that it is unthinkable to give up, and so shaky on its foundations that it can scarcely be supported. … [It is] an ethical choice masquerading as a medical fact.” A recent movement has questioned the idea of brain death, and a New Jersey law allows families with religious objections to insist that doctors not declare a patient dead until the patient’s heart stops. The family of Jahi McMath, a teenager originally declared brain-dead in California, used such an exception to continue her care in New Jersey—for over four years.
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As the opioid crisis rages on, police officers in many areas have one more weapon: New laws permit them to give the rescue drug Narcan (naloxone) to overdose victims without waiting for paramedics. It works, and it saves lives—Leana Wen, the health commissioner of Baltimore City, credits the drug with saving 14,000 people since 2015 in her city alone. But that success comes at a cost, and Wen goes on to state in a Washington Post op-ed that her city is now rationing the drug.
Naloxone’s patent protection expired decades ago, and the drug itself retails for perhaps $15 a vial—and often less for organizations that buy in bulk. But giving that vial to an overdose victim would require an injection, so rescuers without medical training normally receive nasal sprays or auto-injectors instead. Even with steep discounts for public providers, brand-name Narcan nasal spray costs $37.50 per use; the other ready-to-use naloxone, the Evzio auto-injector, costs them $180 each. Multiplying those numbers by thousands of prospective uses has led many departments to cobble together their own naloxone nasal sprays, using generic pre-filled syringes and atomizers.
Wen argues that the government should invoke its rarely used ability to bypass the patent system in exchange for “reasonable compensation” to patent holders, but at least generic forms of naloxone exist: Diabetics who need insulin and asthmatics who need albuterol inhalers have no generic choices in America, even though the patents for both original forms expired decades ago. Dr. Jeremy Greene, a professor at Johns Hopkins, cited a newer-is-better attitude in a 2015 Journal of the American Medical Association article as the main reason why older animal-derived insulin products are no longer available here. He added in an NPR interview that “we don’t believe that there is a conspiracy to keep insulin expensive.”
The situation is murkier for albuterol inhalers. Generic albuterol itself remains widely available at modest prices—but only in vials for nebulizers, whose size makes them unpopular as a rescue treatment. What happened to the iconic inhalers from years ago? They’re still around, but since the propellant has changed from CFCs, and since any new formulation is eligible for patent once more, generic albuterol inhalers disappeared from the American market in 2008.
New corporate and nonprofit market players hope to disrupt the status quo: A consortium of hospitals has teamed up with the VA to start a nonprofit generic-drug manufacturer, arguing in the New England Journal of Medicine that since older drugs often cost very little to manufacture, their nonprofit will be able to sustain itself while charging far below current prices for medicines. To help drugs reach the generic market, the Initiative for Medicines, Access, and Knowledge plans legal challenges to patents it considers questionable. The biggest news, however, is how those drugs will ultimately reach consumers: Amazon’s purchase of online pharmacy PillPack gives it a pharmacy license for all 50 states.
If this array of new market players brings back affordable generic insulin, it would bring the drug’s journey full circle. When surgeon Dr. Frederick Banting and medical student Charles Best first isolated insulin from animals in 1921, they sold their discovery to the University of Toronto, putting the wellbeing of diabetics above their own profit. The price they charged, for a discovery that would yield a Nobel Prize two years later: one dollar.
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When I called to discuss my bill for a few lab tests for my medical practice, the on-hold recording included an advertisement for a “noninvasive prenatal screen.” The lab company’s website elaborated that the “timely information about your fetus’ chromosomal makeup ... can help you make decisions with your healthcare provider.”
What sort of decisions would those be?
In his landmark 1986 work The Nazi Doctors, Robert Jay Lifton explored how the dog-bites-man story of tyrants murdering citizens turned into the man-bites-dog story of doctors being the ones who killed. He summarizes at the outset: “Prior to Auschwitz and the other death camps, the Nazis established a policy of direct medical killing: that is, killing arranged within medical channels, by means of medical decisions, and carried out by doctors and their assistants.” Even as the murder moved to the Holocaust’s industrial scale, doctors researched, designed, and supervised the systems that performed it.
Lifton traces that sordid history to “mercy” killing, then to the notion that people deemed defective were subhuman; he quotes Alfred Hoche, a professor of psychiatry from the University of Freiburg, stating in 1920 that killing them “is not to be equated with other types of killing … but [is] an allowable, useful act.” His reasoning focused on “the tremendous economic burden such people cause society to bear; especially those who are young, mentally deficient, and otherwise healthy.” The list of those deemed “life unworthy of life” soon grew to entire races—but the idea that physicians weren’t killing as much as curing, at least at a national level, remained.