Easing the Stigma of Disease

Photo by Jana Leon/Getty Images

When Lori Hope, 54, a six-year cancer survivor, first tells someone that she successfully battled lung cancer, she is invariably asked, “Did you smoke?”

“My initial reaction to that question, soon after I was diagnosed, was a very powerful, emotional reaction of shame and regret, because I did smoke. And I felt afraid, afraid I’m being judged, afraid I got this disease as a punishment, and even afraid that it could come back and kill me,” Hope says. “It’s not as bad now so many years later, but it still makes me uncomfortable.”

Not unlike many smokers, Hope started as a teenager. After many attempts to quit, she finally kicked the habit in her early 30s. At age 48 she was diagnosed with early-stage lung cancer during tests for another condition. Hope had surgery and has been free of cancer ever since. Despite her good prognosis, she was terrified. “You feel so vulnerable. I wanted to receive compassion and experience hope—not blame and shame,” she says.

Stigmatizing disease is a public health problem that has been around for centuries. From leprosy to HIV, smallpox to syphilis, prejudice against those sickened by the illnesses society most fears has stood in the way of early diagnoses of many diseases. It has also impeded treatment, research and quality medical care. More recently, people stigmatized by disease have experienced discrimination by employers, loss of health insurance and reduced income. Yet the root causes of stigmatizing remain the same: ignorance and fear.

“Society is often cruel towards individuals with illnesses perceived to result from unhealthy and risky behavior,” says Win Boerckel, program coordinator at CancerCare, a nonprofit organization that provides support services to those affected by cancer. In the case of lung cancer—or of HIV/AIDS, alcoholism, drug addiction or sexually transmitted diseases—people often think “it’s okay [for you] to be sick, because you brought this on yourself,” Boerckel says.

This unfortunate view has pervaded society’s relationship to disease since 600 B.C., when those with leprosy, or Hansen’s disease, were forced to live in colonies away from their families and society. This disfiguring, infectious illness remained frightening and repellent, even after a Norwegian physician identified the mycobacterium that causes it in 1873. Progress in finding ways to treat the disease was slow. Antibiotics treatment began in the 1940s, and the combination drug regimen that became an effective, standard therapy for leprosy wasn’t available until the 1980s.

Other diseases—such as HIV/AIDS and many cancers—have traveled a similar path, from stigmatization to greater acceptance, as their causes were discovered and treatments were developed. “When I first went into oncology 40 years ago, I remember the fear of cancer being contagious,” says Carolyn Messner, director of education and training at CancerCare. “Guests would come to a survivor’s home and they wouldn’t drink out of their cups. We’ve come a long way since families of cancer patients stopped hugging and kissing their loved ones for fear they would ‘catch’ their cancer,” she adds. “Now most people recognize that cancer is not contagious—nor does it mean death.”

But plenty of illnesses remain stigmatized. Depression, schizophrenia and other mental illnesses, not to mention alcohol and drug addictions, are still so embarrassing to some who have them that they never seek treatment. The discovery of the biological and genetic bases of these illnesses, and an armament of drugs to treat them, haven’t entirely eliminated the shame and blame heaped upon their victims. The stigma of incontinence prevents more than half of all individuals who experience the problem from telling their doctors—though there are now drugs to treat the condition. And the dim view society takes of obese individuals—even though more than two-thirds of the U.S. population is overweight—prevents some from receiving preventive care, such as mammograms, blood pressure tests and flu shots.

Respiratory diseases such as tuberculosis and lung cancer are among the most stigmatized. Even though only about 35 percent of lung cancer patients are current smokers, 15 percent never smoked, and 50 percent—like Lori Hope—haven’t smoked in many years, many feel too intimidated or ashamed to seek medical attention. “We tell people that they have the right to demand good treatment and not be treated as a demon, just because they smoked,” CancerCare’s Boerckel says. “Lots of people do things they regret.”

John Walsh, 59, who has chronic obstructive pulmonary disease (COPD), has never smoked. According to Walsh, who is president of the COPD Foundation, COPD is an umbrella term for many progressive lung diseases. Most are caused by smoking, but not all. Walsh has the genetic form of this illness, known as alpha-A1antitrypsin deficiency, which is caused by a gene mutation. His sister Susan, 62, and his twin brother, Fred, also have the gene, and are being treated for COPD, too.

Stigmatization of disease can also inhibit research. Lung cancer has been seen as a self-inflicted illness, without long life expectancy, and so research funding has often gone to more “deserving” cancers, Boerckel says. In 2007 the National Institutes of Health set aside $572.4 million for breast cancer research, but only $226.9 million for research on lung cancer, although lung cancer remains the number one cancer killer in the United States.

“The reason we know so much now about breast cancer and why treatment has been so effective is the money we’ve put into it and the advocacy behind it,” says Gregory Otterson, M.D., medical director of Thoracic Oncology at the Ohio State University Comprehensive Cancer Center-Arthur G. James Cancer Hospital. “With lung cancer, the stigma persists, and there is a perception that ‘you brought this on yourself.’ That same argument was made about HIV, and it’s now obvious that it’s inappropriate. Look at what happened with AIDS.”

AIDS activism resulted in an influx of research dollars, a variety of new, more effective drug treatments, and advancement on a vaccine. “AIDS research has been effective,” Otterson adds. “People are living for years now with what used to be a rapid, fatal course of disease. For lung cancer, we need people to get angry, to get agitated, and to not be embarrassed to demand effective treatment.”

Another critical aspect of stigma for cancer survivors, says Julia Rowland, director of the Office of Cancer Survivorship at the National Cancer Institute, is discrimination in employment. “Patients worry about telling their employers [they have cancer] for fear of discrimination,” she says. “They especially worry about being marginalized by others, some of whom may incorrectly assume or fear you are going to die.”

A 2006 national survey of cancer survivors, sponsored by biotech firm Amgen in collaboration with the National Coalition for Cancer Survivorship (NCCS) and the Wellness Community, showed that most employers today appear to be more sensitive to the needs of their employees who are struggling with cancer than were employers of 30 or 40 years ago. Passage of the Americans With Disabilities Act in 1990, and the fact that so many more people are living and working with cancer, has meant that a majority of employers, three of four in the NCCS survey, accommodate the needs of workers who have cancer. Three out of five survivors also reported receiving support from their coworkers. Employment problems for some cancer survivors do still exist, however. The NCCS survey found that 6 percent of survivors reported being fired or laid off, 7 percent were denied a raise or promotion, and 4 percent were denied health insurance benefits. The National Academy of Science’s Institute of Medicine in 2005 said that as many as 20 percent of cancer survivors face work limitations two to three years after diagnosis, and that all cancer survivors are at risk of experiencing subtle employment discrimination.

The good news is that the stigma associated with many diseases has changed over time. CancerCare’s Messner points to the transformation over the last few decades of society’s view of breast cancer. Thanks in part to the “revelations of women like Betty Ford and Happy Rockefeller,” who spoke openly about their diagnoses in the 1970s, Messner says the disease is no longer stigmatized. The shift in public attitudes has led to the formation of patient support groups, such as the 30-year-old Breast Cancer Network of Strength, and to grassroots fundraising for education and research. In fiscal year 2007, for example, the Strength Network responded to more than 45,000 queries in 150 languages. The American Cancer Society has funded breast cancer research grants of more than $323 million since 1972. And the nonprofit Susan G. Komen for the Cure has invested $1 billion in research, education, screening and treatment since 1982.

Lori Hope sees a similar, growing understanding of lung cancer that may help destigmatize the disease. People are slowly realizing that blaming the victim “gets us nowhere,” she says. “It doesn’t help prevent disease; it just further isolates the patient. Understanding this is the point at which real progress begins.”

Patricia McAdams is a health and science writer based in Philadelphia.