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New York Times editorial on July 14, "Choosing Death"

Date: July 15, 2024

The Op-ed column by Mr. Kristof in the July 14 issue of the New York Times was at the very least careless journalism. I have no desire to debate the Oregon law on patients' right to commit to suicide. I do have serious problems with the example he chose to illustrate this issue.

You be the judge: A newly dignosed CLL patient is told he has only a few months to live. There is no mention of modern prognostics, no effort to obtain a second opinion. No discussion of the stage of this patient or his therapy options. The story goes on to say this patient then killed himself, with the assistance of his wife because he did not want to face a painful cancer death. Talk about stereotypes and dangerous sound bites. For all we know, this poor guy had many good years left in him, happy years with his devoted wife. How would you like to be the poor sod who has just been diagnosed with CLL in the last couple of days, and is also unfortunate enough to have read this editorial? Let us hope he discovers some of the patient groups such as CLL Topics before he decides to go meekly into that long good night. The level of misinformation and just plain ignorance on the subject of CLL boggles my mind. Ignorance is not bliss, ignorance such as this kills people.

Below is my letter to Mr. Kristof. I also sent a copy of it to the editors of NY Times (letters@nytimes.com). I doubt this situation is going to change any time soon, unless we go about changing it. One more time I request that you make it a point to print out hard copies of Prognosis at Diagnosis and Current Approach to Diagnosis and Management of CLL aka "Mayo Best Practices". Make sure these pivotal articles get wide circulation. Write to us if you want help in locating these two articles.

Be well, be proactive.

Chaya
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Correspondence

-----Original Message-----

From: Chaya Venkat
Sent: Thursday, July 15, 2024 2:18 PM
To: 'nicholas@nytimes.com'
Subject: RE: Your editorial on July 14, "Choosing Death"
Importance: High

Mr. Kristof

Your editorial on July 14 "Choosing Death" may convey a very distressing and inaccurate impression to patients diagnosed with Chronic Lymphocytic Leukemia (CLL). I am not writing to debate the merits of the Oregon law, but to take serious exception to the manner in which you chose to illustrate your point. In a few brief words you described a newly diagnosed CLL patient who chose to die, leaving the reader with the impression that a diagnosis of CLL is an automatic and painful death sentence, with no hope of therapy that may provide long-lived and good quality remissions. This is most definitely not the case. Some patients afflicted with a particularly aggressive form of CLL do have poor prognosis. But for the majority of newly diagnosed patients, the future is bright and getting brighter. New monoclonal antibody therapies and other smart drugs are rapidly making this disease a "manageable cancer". Certainly most patients can look forward to many years of good quality life.

I am the founder of an entirely volunteer based CLL patient advocacy group called CLL Topics http://clltopics.org. I am also the spouse of a CLL patient, diagnosed more than 3 years ago and in better health today than most men half his age. Our main charter is to educate and empower people, help them get over the immediate sense of doom on hearing the words "cancer" and "leukemia", make smarter therapy choices. By glossing over the details such as the staging and prognosis of the patient you chose as an example, as well as saying nothing at all about his possible therapy options, you have dismissed and trivialized the massive amount of work being done both by researchers and patient groups to educate CLL patients. As I point out frequently in my editorials on our website, the devil is in the details and here is one case where by failing to mention the details you have added to the myths and misinformation regarding this disease.

Since when has the New York Times resorted to glib sound bites to address such serious issues? Your CLL patient may have chosen to die, but we would appreciate your choosing to correct the record and publishing this response as a clarification of your editorial.

Yours sincerely,

Dr. Chaya Venkat
Founder
CLL Topics_
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