“Doctors are sadists who like to play God and watch lesser people scream”

The title of this post is a quote from the film Juno, a cleverly dismissive bit of venom spoken by the protagonist's stepmother in a rejection of medical authority.

It came to mind today as I listened to a fascinating podcast recalling the history of laetrile in the U.S. during the 1970s.

Laetrile was a drug made from the extract of stone fruits that became a rallying cry for a movement begging the FDA to step out of the way of cancer patients who "knew their bodies" better than scientists and didn't want regulation preventing them accessing a miracle cure.

The FDA banned the drug. Its chief proponent was a discredited chemist who had never completed a degree, cited primarily testimonials as anecdotal evidence of its utility as a cancer treatment, and hypothesized a mechanism of action whereby the chemical was converted to cyanide in the body that targeted exclusively cancer cells. He could not substantiate these claims.

Despite these questionable origins, cancer patients for whom modern medicine held out little in the way of hope pursued laetrile out of desperation. Patients seeking the treatment either purchased it on the black market or traveled to clinics in Mexico, where it was legally manufactured and employed as a treatment.

The podcast played recordings of passionate cries from fervent patients attesting in state and federal hearings as to its curative effect on their cancers.

Their pleas were countered by a physician placed in the awkward position of explaining to the court that while the testimony was moving, the testimony from the far more numerous dead patients who experienced no such benefit was the missing element needing to be weighed in the matter.

The context of the era was a growth in distrust that changed the doctor-patient relationship. Instead of paternalistic decision-making undertaken entirely by a trusted and informed physician-scientist who knew best, patients were starting to demand shared decision-making.

Combined with the growing distrust of authority that resulted from the experience of involvement in the Vietnam war, patient rights groups began to adopt the rallying cry of "My body, my choice," that had been used by the feminist movement following the passage of Roe v. Wade several years beforehand.

The pro-laetrile lobby, through an odd couple alliance with the John Birch Society (not unlike the fiscal conservatives allying themselves with the Christian right to become a formidable voting bloc in the 1980s) began to consolidate political power and push for making the drug available without FDA approval.

The John Birch Society, which perceived regulation by the FDA as yet another intrusive move by an overreaching federal government on the verge of being overrun by an authoritarian communist conspiracy, lent their lobbying apparatus to patient advocates demanding unregulated access to laetrile.

Don Kennedy, whom I knew as a pensive and kindly professor in several classes when I was at Stanford (he stepped down as university president when I arrived on campus) was the FDA Commissioner at the time. He successfully repudiated attempts by the lobby to allow patients to bypass FDA regulation of a drug with known toxic effects and no scientifically documented benefits.

When the pro-laetrile lobby lost at the federal level, they regrouped and staged a far more successful fight at the state level, where about half the states in the union ultimately passed laws explicitly permitting patient to use laetrile regardless of FDA approval.

The fight was encapsulated by a toddler with leukemia who came to be known in the media as "Laetrile Boy." The child began conventional treatment at Massachusetts General Hospital under a leading pediatric hematologist of the day, and began to recover with chemotherapy. Discoveries pioneered there had significantly improved the effectiveness of treatment for childhood blood cancers.

His parents, caught up in the times, surreptitiously stopped administering chemotherapy at home in favor of giving him a "natural" healing diet and laetrile pills, but continued to bring him to his usual appointments.

When his blood work showed abnormalities that suggested he was not completing his home regimen of chemotherapy, his hematologist confronted the boy's parents, and they confessed what they had done.

Within weeks, the child's blood cancer relapsed, and this time the physician took the extraordinary measure of involving the courts. The judge in the case ultimately weighed in that while adults had the right to forego potentially life-saving treatment based on their personal beliefs, parents had no right to do so on behalf of their children.

By court order, a nurse came twice daily to the family home to observe the child ingesting the chemo tablets. The parents were forbidden from leaving the state.

The media covered the trial closely, and the nation was rent into factions decrying government overreach and the inability of parents to decide the best course of action for their children on the one hand; on the other, that any child's parents who denied their child life-saving treatment in favor of quack remedies were guilty of criminal neglect, abuse, or worse.

The parents, convinced that they knew what was best for their child, successfully fled to Mexico where they eschewed chemotherapy in favor of laetrile and health smoothies, which they termed metabolic therapy. I won't spoil the ending for those with interest in listening to the complete podcast.

The notes of similarity between their time and our own are striking:

• A distrust of authority, be it medical or governmental.
• A rejection by a large segment of the population of science-based treatments in favor of unproven remedies.
• A sense of conspiracy that the pharmaceutical industry has placed profits above patient well-being.
• The refrain, this time with critical implications because it is occurring during a public health emergency with a highly transmissible infectious disease, of "My body, my choice."

I have discourse with intelligent, reasonable people whom I respectfully disagree with. They tend to boil down to one of two arguments. Either I am a sheep being led to the slaughter for my inability to see as clearly as they see, or I am unable to perceive that this time, it's different.

It reminds me of an article published in 1964 in Harper's Weekly, which explored the historical basis of what it termed "the paranoid style" in American politics.

Paradoxically, reading it provided some comfort, as it seemed to reassure me that the more things change, the more they stay the same.