Adnkronos (Adnkronos) – Pope Leo XIV, who underwent surgery at the Gemelli Hospital for the removal of a malignant pulmonary fibroma, announced the need for the procedure during the Angelus. Before him, John Paul II had not hidden the signs of the disease; in the 30s, baseball champion Lou Gehrig made public his diagnosis of amyotrophic lateral sclerosis (ALS); actress Shirley Temple was the first famous woman to reveal she had had breast cancer and a subsequent mastectomy; more recently, singer Kylie Minogue also spoke about her breast cancer.
Again, in 1991, at the height of his career, Los Angeles Lakers champion Earvin 'Magic' Johnson revealed he had contracted HIV; in 2013, actress Angelina Jolie told the New York Times that she had pathological variants of the BRCA gene and had therefore decided to have both breasts removed. "Gone are the days when the illnesses of popes, heads of state, and famous people in general were considered top secret and the subject of speculation by the press and the public.
Today, however, it is often those directly affected who speak out, sometimes to raise public awareness of their condition and raise awareness of possible prevention measures, sometimes to solicit donations for research. However, the phenomenon is still being studied: while on the one hand it can produce very positive effects, on the other it can sometimes give rise to unexpected and unwanted consequences.
Roberta Villa, a physician and science communicator, takes stock of the situation in an analysis on the anti-hoax website "Doctor, but is it true that?", edited by Fnomceo, the National Federation of Orders of Dental Surgeons.
Who were the first famous people to break the silence? "In the modern era," Villa analyzes, "the first famous people to talk about their illnesses in the media were baseball champion Lou Gehrig in 1939, who, by making his diagnosis public, brought ALS (which also took its name from him, as Lou Gehrig's syndrome) to the attention of the media. Then, in the early 1970s, former child prodigy of black-and-white cinema, later turned diplomat, Shirley Temple, the first famous woman to reveal that she had had breast cancer and a subsequent mastectomy. While Shirley Temple began to break the ice, the most well-known and studied case for its effects on public health was the so-called 'Betty Ford blip,' the approximately 15% increase in new breast cancer diagnoses in the United States in the months following the revelation of that of first lady Betty Ford, wife of the 38th US president Gerald Ford. Thirty years later, singer Kylie Minogue also spoke about her breast cancer: media coverage related to the disease, with an invitation to be more aware of it, was a significant step forward." “check, in the next 10 days they increased 20-fold; bookings for a mammogram increased by 40% in 2 weeks, doubling among women aged 40-69 who had never been screened, and 6 weeks later requests remained more than a third higher than before the announcement.”
Returning to the White House, open communication about Ronald Reagan's colorectal cancer also "produced positive effects in terms of public health and cost savings: around the time of the president's diagnosis, calls to the National Cancer Institute seeking information about this cancer increased, as did adherence to screening programs and consequently, rates of early and advanced-stage diagnosis of the disease," the author recalls. "To quantify the effectiveness of this phenomenon, researchers at the National Institute for Occupational Safety and Health (NIOSH) calculated the cost per life-year saved related to the event. Between 1986 and 1996, this cost-effectiveness ratio progressively increased, approaching $29.000 in 1996. In health economics, such a figure (lower than the historical standard threshold of $50.000 per life-year gained) demonstrates that the event had an incredibly effective and sustainable impact on public health."
But is it true that celebrity ads reduce stigma? "Transparency," Villa emphasizes, "is especially beneficial when it reveals a disease associated with discrimination and stigma. In this sense, actors, athletes, singers, and the many other celebrities who did not hide their HIV status represented a real turning point, even at a time when being HIV positive still meant an almost certain progression to AIDS and, unfortunately, often also social isolation. The revelation of having contracted the virus by one of the greatest basketball players in history, Earvin 'Magic' Johnson, led, for example, to increased interest and discussion about AIDS and, according to the Centers for Disease Control and Prevention in Atlanta, even a reduction in risky behaviors. Likewise, we cannot forget the role that many celebrities (actors, singers, athletes) have played in bringing the topic of mental health into the public debate, sharing their struggles and speaking openly about the treatments they have undergone. Knowing that even successful people struggle to stay well can help reduce stigma, increasing awareness of the issue. public, offering a role model and encouraging those in need to ask for help without shame. However, more careful studies will be needed to verify whether celebrity communication truly produces profound changes in this area.
One of the most well-known media phenomena in this field can also be interpreted in terms of action against the stigma of women undergoing bilateral mastectomy: "The 2013 article in which actress Angelina Jolie revealed in the 'New York Times' that she had pathological variants of the BRCA gene and had therefore decided to have both breasts removed to avoid the fate of her mother and other women in her family who died young from cancer. Her story," Villa points out, "could have been an encouragement to patients undergoing such procedures, demonstrating firsthand that these should not be interpreted as threats to one's femininity. The so-called 'Angelina Jolie effect', however, primarily led to a rush to genetic testing, even in people without particular risk factors. In the United Kingdom, requests for genetic counseling almost doubled, and in the United States, among adult women with private insurance, the rate of tests performed per day for every 100.000 women in the 2s increased from 0,71 to 1,13." weeks following the article's publication, and a 37% increase was consolidated in the following months, without a parallel increase in follow-up services. In short, most of the tests prompted by the outcry over this story in the United States were negative. In other words, it didn't produce health benefits, but only anxiety among women and unjustified expenses.
For her part, Betty Ford's daughter was still advocating for breast cancer screening at age 35 in the early 6s, despite there being no scientific evidence to support its benefits,” the author notes. “Similarly, the diagnosis of prostate cancer in some politicians and other celebrities in the United Kingdom has led to a movement in recent years in favor of prostate cancer screening, even in defiance of local health authorities' recommendations. The negative effects of this type of communication, however, aren't limited to excessive screening, which ultimately proves not only useless but even counterproductive. In the six months after another first lady, Nancy Reagan, underwent a radical mastectomy, there was a surge in these more invasive procedures in the United States—3.400 more than expected—while the likelihood that a breast cancer patient would receive a more conservative treatment, such as a lumpectomy, dropped by 25%.
"In short," Villa concludes, "transparency is a good thing, but it presents risks, also because this type of communication tends to reach the people who are most informed, not necessarily those we should prioritize reaching. The very content of the appeals, which come from patients and family members without expertise but who gain sympathy and trust, may end up being listened to more than the recommendation of their doctor or a scientific society."
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