This essay was supposed to be up on Monday, but we lost power for literally 4 full days, with no heat, no internet, no telephone. Luckily the contents are not bound to a specific time; I tried to convey general knowledge by health psychologists, oncologists and research teams about what we know about stigmatized diseases.

A dear friend sent me an extraordinarily beautiful piece of music. It will be your reward after making it through the troubling and/or enraging facts I am going to introduce today.

I want to talk about the consequences of being diagnosed with a disease that is generally stigmatized in our society, consequences that affect both the individual patient and also the general fight against the disease. I will need to cover some general statistics, but my focus will be on the psychological and societal effects of living with or dying of a disease that carries a large stigma. (I have by now read widely on the issue, but am too tired to put all the references in order – you just have to trust me. General sources for many of the details can be found here and here. These were the most recent data I could find, maybe lagging by two years or so.)

It used to be the case that AIDS was the prototypical stigmatized disease. General homophobia had plowed the ground for condemnation of sexual “lifestyle” choices that resulted in this deadly illness. People were judged to be, if not deserving (according to bigots), then at least responsible for their own fate, given their sexual behavior. In addition to carrying the stigma of being gay, they now were perceived to be spreaders of the plague, usurpers of medical resources that could have been devoted elsewhere.

Many patients internalized a sense of shame or guilt (even if they acquired the disease through non-sexual contact like blood transfusions) and suffered from the taboo to reveal it. But patients were also diagnosed relatively young and increasingly able to live long, full lives on pharmacological regimens; subsequently, many of them had the years and motivation to become advocates and fundraisers that pushed research in to treatment and cures forward.

These age characteristics are not true for lung cancer, another deadly scourge that carries the great stigma of having been self inflicted, through smoking. Lung cancer can be triggered by genetic factors, by external pollutants like asbestos and radon, by exposure to second hand smoke – but about 80% of patients do have a smoking history, often barely remembered in their youth, stopped long ago, which comes back to haunt them.

The disease has a dreadful prognosis, when detected late which is mostly the case (only 16% are detected early, I am one of the lucky ones.) More than half of people with lung cancer die within one year of being diagnosed. It is the leading cancer death among men and women (these days almost as many women are diagnosed as are men,) killing more than colon, breast, and prostate cancers combined. Blacks die from lung cancer in larger numbers than Whites, even though they smoke less than their counterparts. Mediating factors seem to be worse access to good health care, genetic factors, co-morbidity of other ailments, and additional exposure to environmental pollutants.

The guilt over having smoked, or fear of being judged as a morally weak person for giving in to the addiction (never mind that the product, cigarettes, is made addictive and cleverly advertised to promote sales) has many patients wait to go to the doctor until it is too late. It also leads to self recrimination and depression which are not conducive to an engaged fight against the disease. Lung cancer patients have one of the highest rate of refusing treatment because some of them feel they deserve their fate.

The hesitancy to admit to a lung cancer diagnosis for fear of being shunned isolates people, preventing joint advocacy for better treatment conditions. Being on average diagnosed around age 70 and having such short survival rates does not help either with advocacy. As a result, non-profit fundraising for research and treatment developments is woefully meager, complicated by the fact that people do not want to give money to people who they feel caused their own suffering.

The money raised for breast cancer, for example, is five-fold compared to what lung cancer receives. In absolute terms, lung cancer accounts for 32% of cancer deaths while receiving 10% of governmental cancer research funding. The difference is staggering and has a “spill over” effect—fewer dollars attracts fewer researchers which leads to fewer breakthroughs. We do start to see targeted therapies and immunotherapies, but it is sparse in comparison to other cancer research successes.

Here is the crux: many oncological researchers advance a “utilitarian” argument, insisting that it is not lives saved that matter but years of life overall – and that is of course correlated to the age of diagnosis (again late in life for lung cancer) and the speed of spread of the particular cancer. Saving a 40 year-old with a cancer that has less of a tendency to ravage all parts of your body in no time, gains more years of life than saving several crones for a short while before they come down with likely metastases. It is a rational argument, and a devastating one, not unlike the considerations we have seen in Covid-19 situations where limited resources led to triage decisions that involved statistical life expectancy. I get it.

I think the tendency to hold people responsible for their own fate – you should never have smoked!! – can be sourced back to a much deeper psychological need, the maintenance of an illusion of control. “If I do the right thing, nothing bad will happen to me. If they didn’t do the right thing, then no wonder that bad things ensued…” – That logic protects you from the disquieting fear that something ripping your breath away and taking the very source of life with it might lurk haphazardly around every corner. But the logic also requires to stick to blaming the victims in obvious ways, even if they were young, uneducated or unknowing, acquiring the seeds of the cancer in the 1960s and 70s.

To stigmatize – describe or regard as worthy of disgrace or great disapproval – for a single behavior, irrespective the qualities of a patient as a whole, allows distancing from the fear of a miserable death.

A cruel assessment, from the perspective of the patient, let me tell you.

Photographs are of posters in an exhibition about smoking and advertisement at the Museum der Arbeit In Hamburg, Germany.

Music as promised. Dedicated to my Beloved the day after Valentine’s Day, since I could not make it through all this without him.

A shout-out also to the cardiothoracic surgeon Dr. David G. Tse and the oncologist Dr. Dilip Babu, both at Kaiser Permanente. Their medical expertise was matched by their kindness, both valuable in more ways than I can count.