When David Carr, The New York Times’ media columnist, died last week, the reaction veered toward profound sadness and a celebration of his many contributions. The tributes came swiftly and in great numbers.
But the reaction was notably different two days later to the news that an autopsy found Carr, a longtime smoker, had advanced lung cancer, and the disease contributed to his death at age 58.
For some, that detail seemed to transform Carr’s death into a simple message.
Hey, journalists: David Carr died of lung cancer. What are you doing still smoking?
— Mark Harris (@MarkHarrisNYC) February 15, 2015
Don't smoke. http://t.co/B8dr6UlagF
— Matt Pearce (@mattdpearce) February 15, 2015
David Carr's death was confirmed as lung cancer from smoking cigarettes. Don't smoke, kids. It kills you slowly and dates you tremendously. — David Levitz (@DavidLevitz) February 15, 2015
In Los Angeles, 56-year-old Deana Hendrickson read messages like these and grew upset.
"What the hell is this?" she recalled thinking. "How awful."
Hendrickson knows the horrors of smoking and lung cancer. She lost her mother, Rita Stein, to the disease at age 77 in 2013. Her mom was a smoker. And Hendrickson believes tobacco companies are peddling a deadly product.
But she also has seen how lung cancer victims are viewed and treated. It's different from the sufferers of any other cancer. There's a unique stigma that comes with lung cancer -- perhaps the ultimate example of disease as morality play, of illness as some kind of judgment.
Lung cancer is the third most common cancer diagnosis in the United States, just behind breast and prostate. It is by far the deadliest, projected to kill nearly 160,000 people this year, more than the next three deadliest cancers -- colorectal, breast, prostate -- combined. And smoking is the leading risk factor for lung cancer. Yes, smoking kills.
But not every smoker gets sick. And an estimated 16,000 to 24,000 non-smokers are expected to die from lung cancer this year, too. That's up to 20 percent of the lung cancer diagnoses. If this were its own cancer category, it would be among the Top 10 leading causes of cancer deaths, according to the American Cancer Society.
But it can feel like if you get lung cancer, you earned it. You should've known better. The sympathy typically reserved for cancer patients is often missing. People with lung cancer can feel ashamed of their diagnosis. It's a problem recognized by oncologists and medical associations. The American Lung Association recently began a push to combat the stigma related to what is often called "the invisible cancer" because the disease is often not diagnosed until the cancer has reached an advanced stage, leading to just a 16 percent five-year survival rate.
Lung cancer is grim news. And the stigma of lung cancer is pervasive, casting a disapproving pall over a medical calamity, harmful to not only patients, but also to the disease's prospects for research funding.
Seeing the stigma attached to Carr's death, Hendrickson couldn't sit idly by. She runs the Twitter account Faces of Lung Cancer, which is part of an online effort to unite patients. She asked for people to stop "blaming the victim."
— Faces of Lung Cancer (@LungCancerFaces) February 15, 2015
And she wasn't the only one.
This is not exactly a popular position. Hendrickson was accused of being a smoking apologist. She's not. She just doesn't see the point of using someone's lung cancer diagnosis or death to make a point about smoking.
"I think everyone knows at this point you can get lung cancer from smoking," she said. "It’s just insensitive after death. It’s really sickening."
The stigma also isn't helpful. It doesn't help the patients fighting the disease. It doesn't encourage people at risk to seek out potentially life-saving screening.
Non-smokers who get lung cancer are especially sensitive to the stigma, to the feeling that they are being judged for getting sick. They might've been exposed to other risk factors, such as radon or pollution. Or, maybe they were just unlucky -- a study released earlier this year found that random mutations were responsible for two-thirds of all cancers.
According to the autopsy, Carr suffered from metastatic small cell neuroendocrine carcinoma of the lung and heart disease. That type of cancer is rare and aggressive. Smoking is the single biggest risk factor, but people with exposure to radon and asbestos also can get it.
But Carr smoked. And that likely contributed to his disease.
Carr was already a cancer survivor. He had Hodgkin's lymphoma when he was younger. He'd also beaten an addiction to crack cocaine. In his 2008 memoir "Night of the Gun," Carr wrote that "Cancer keeps its own appointment schedule. Your body belongs to you one day, and the next it becomes the host."
It's easy to imagine that if he had died from a recurrence of lymphoma, the reaction would have been different, softer, more focused on Carr as a man rather than as a message.
In Hendrickson's eyes, lung cancer shouldn't change that.