Patient's rights: Where everything is just...peachy?

The time when the US Supreme Court ruled on whether cancer patients had the right to treat their cancer with peach pits

In a recent post, I noted the results of another large, randomized trial showing that Ivermectin is an ineffective treatment for COVID.  This study joins a growing list which also sadly reflect the result when popular belief directs research rather than solid, basic science. Unfortunately, some of the loudest voices perpetuating this dangerous information are doctors, including Joe Ladapo, a classmate of mine at Wake Forest whom I knew to be quiet, intelligent, and ambitious during our years there.

How some extrapolated that a medication used to clear parasites from horse intestines would be helpful in killing a virus in human lungs still baffles me. And that anyone would take a nasty smelling paste that sat next to liniment in my local feed store with hopes of treating (or preventing) a deadly infection told me just how deep the fear of COVID and our uncertain world ran. 

Fear is a powerful force. And one that is often exploited.

I’m sure many of you remember the proliferation of lawsuits over this issue. Most courts got it right by punishing physicians who administered ivermectin to prisoners without their knowledge or consent, upholding doctors’ refusals to administer unproven medications, and supporting administrative action against physicians who recommended its use (although a lawsuit against the FDA was recently revived).

Wimpy, the perfect ivermectin patient (L) and a positive response to ivermectin treatment (R)

Ivermectin use in COVID continues to take up enormous energy even here on Substack where physicians gain followers by igniting passion around “patient’s rights.” Like toddlers throwing a tantrum at Target, these hucksters argue that anyone should be able to take anything, damn the consequences! Except when it doesn’t work and then, obviously evidence-based emergency rooms and overcrowded primary care clinics will be there to help.

Using appeals to individual rights to support unproven and dangerous treatments for disease is not a new tactic.  Take laetrile, for example. 

Haven’t heard of it?  What about Vitamin B17? Or amygdalin?

Amygdalin (aka laetrile) is a naturally occurring chemical found in the seeds of many plants including apricots, peaches, and apples.  After ingestion, the compound is broken down into cyanide.  Yes, you read that right. Cyanide, as in the poison, comes from peach pits.

In the late 1970’s, Dr. John Richardson published a book entitled “The Laetrile Case Histories: the Richardson Clinic Experience” which summarized 62 dramatic responses of cancer to treatment with the unregulated supplement, laetrile. Dr. Richardson recommended cancer treatment with this “vitamin therapy” instead of traditional medicine based on these limited results. (Admittedly, traditional cancer treatment in the 1970’s was still fairly barbaric.)

Treatment with laetrile was not new or unstudied. In 1953, the Cancer Commission of the California Medical Association found it was ineffective. Scientists in Canada tested two forms of laetrile and neither produced meaningful results. And between 1957 and 1976 the National Cancer Institute, succumbing to public pressure, funded four studies in animals that showed no benefit worthy of undertaking human studies. These results were confirmed by separate studies at large cancer institutions including Memorial Sloan Kettering.

Despite this, many states approved laetrile for use and the FDA was under tremendous pressure to approve its use.  One patient, Glen Rutherford of Conway Springs, Kansas even sued the FDA to allow him to import laetrile from Mexico.

Mr. Rutherford, a salesman, was diagnosed with curable rectal cancer in 1971 but declined the treatment recommended by his physicians. Instead, he sought care in Mexico where a surgeon there performed an operation and then treated him for 15 days with laetrile. 

After his treatments, Mr. Rutherford smuggled a large quantity of laetrile back to the US which he took at the Mexican doctor’s recommendation.  When his supply of laetrile ran out, he sued the FDA for the right to import the unapproved substance and the decision ultimately landed in the 10^th U.S. Circuit of Appeals.

In October 1976, the court ruled that the FDA had “insufficient information” to ban its use and it needed to “develop a record supportive of the agency’s determination.” The US Supreme Court unanimously upheld the FDA’s authority to ban laetrile in 1979, a decision that made the front page of the New York Times.

Thus began a national movement to turn access to laetrile into a patients’ rights issue.  Advocates argued cancer patients had the right to receive any treatment that they determined was in their best interest.  How could any doctor, judge, bureaucrat, or Senator deny patients access to hope (that also happened to be poisonous in very small quantities)? Several national organizations latched on to the cause including the John Birch Society and the Committee for Freedom. Sound familiar?

Mike Wallace delivering a CBS special report in March 1974

Congress ultimately demanded the NCI perform a trial of the use of laetrile in patients with cancer. The study enrolled 156 patients and concluded in April 1981. Rose Kushner, a journalist, cancer survivor and advocate summarized the findings in her 1982 book, Why Me?

The study was published in the New England Journal of Medicine in 1982 and concluded “the findings of the laetrile tests with cancer patients present public evidence of laetrile’s failure as a cancer treatment.”

Ummm, yeah. No surprise. IT WAS CYANIDE and that’s what the data said all along.

Mr. Rutherford’s response to the trial results: “contrived, self-serving bunch of lies.”

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While preparing this post, I searched for Dr. Richardson’s book on Amazon and sadly it is still in print. Alongside this gem. 

Cancer Culture does not endorse cooking with, ingesting, touching or even contemplating cyanide ingestion in any form.

Sigh.

Fear, desperation, and hope are powerful motivators, especially when your life or the life of someone you love is on the line. I am hopeful that in the future we will be able to practice individualized, evidence-based medicine including supplements if appropriate (not including laetrile obviously).

Until then, multiple studies have shown actual harm in taking supplements like antioxidants and many others may interfere with traditional treatments.

Apricot stones contain cyanide,’ he replies drily. ‘The death cap mushroom has a fifty per cent fatality rate. Natural does not equal safe. There’s a plant in my garden where if you simply sat under it for ten minutes then you’d be dead.’

Job done: she bins the tablets.

I ask him about that plant over a colonoscopy later.

Water lily.

― Adam Kay

When considering taking a supplement, always talk to your oncologist.  If you want to do your own research, check out Memorial Sloan Kettering’s About Herbs website and app. Here you can access the latest data on the use of herbs and supplements in cancer.  

So, I’m curious on what this community thinks about this issue. Also note that I understand this may bring up some strong feelings so please post with kindness. We are all doing our best.

Have you ever taken a supplement? What made you try it and how did you evaluate its effectiveness?

Should patients be allowed to take whatever they like regardless of the utility or possible side effects?

And should physicians be responsible for administering care they believe is harmful or without merit?

On my mind…

A happier Peach Pit story