In the past week, two major news stories have sparked discussions across the nation about our attitudes toward preventive health policies. Although ostensibly very different, the two stories actually present deeply intertwined issues and reflect our society’s unease with diseases that are either unpredictable or poorly understood.
The first article addresses breast cancer. On May 14, 2013, renowned actress and director Angelina Jolie wrote a piece in The New York Times about her decision to undergo a preventive double mastectomy. Her article received widespread acclaim, as well as some criticism. The praise was directed largely toward Jolie’s article’s effect of raising awareness that breast cancer affects women (and men, to a lesser extent) without regard to wealth, social status, or profession, and that the decision to have a mastectomy—whether prophylactic or medically indicated—should not result in stigma or shame. Criticism of the article focused mostly on the perception that the factors affecting Jolie’s decision to undergo the procedure are portrayed simplistically and are not applicable to the vast majority of women.
The second article is on bacterial meningitis. The New York Times published an article on May 17, 2013, entitled “For Gay Men, a Fear That Feels Familiar” that discusses a deadly bacterial meningitis outbreak among gay men in New York City and the steps taken by one physician to curb the outbreak and raise awareness among at-risk individuals. The author of the article attempts to compare the outbreak to the early cases of HIV/AIDS, describing the ignorance, mystery, and fear surrounding the disease. However, unlike with HIV, there is a vaccine for bacterial meningitis. The challenge then, the article posits, is getting people to understand the risk of infection and to proactively take steps to prevent it (by getting a vaccine, currently offered for free in New York City, according to the article).
In this column, I compare and contrast these two discussions. On the one hand is the discussion of breast cancer—a disease that strikes without regard for what someone does in the evenings or on the weekends, or for how much money or fame one might have. One would be hard-pressed to accuse a person with breast cancer as having “deserved” it or having done something to contract it. On the other hand is a strain of bacterial meningitis that some describe as reminiscent of HIV, popularly associated with casual sex among men in dark alleys and back rooms. However, the outbreak could very easily have occurred in another close community, such as within a congregation of a Catholic church due to the sharing of a communion cup.
Using these two examples, I argue that to truly advance health policies, we must abandon our moral approbation toward both diseases and treatments, resolve to educate ourselves as to the health risks we face individually, and proactively take steps that are reasonably calculated to minimize our risk (and, in the case of infectious diseases, to minimize the risk to those around us).
Abandoning Moral Approbation Toward Disease and Treatment
According to a CNN opinion piece by Dr. Aaron Carroll, “[B]reast cancer awareness is at an all-time high in the United States.” Indeed, from Betty Ford’s 1974 disclosure of her breast cancer and mastectomy, to awareness campaigns such as that symbolized by the pink ribbon and the Keep A Breast Foundation’s “I heart boobies” slogan, it seems like everyone is at least “aware” of breast cancer. I recently attended the Kentucky Oaks (on the eve of the Derby), and the roughly 100,000 people in attendance had all donned pink in recognition of cancer survivors. Everyone can get behind the fight against cancer, racing for “the cure.” You can buy shirts that say “Fuck Cancer.” No one will stand against you.
Less talked about, though, is the actual treatment of cancer (breast or any other type). There is no clean “cure,” no panacea that will protect the undeserving innocent from developing this debilitating and often fatal disease. Rather, less-than-glamorous procedures like chemotherapy, radiation therapy, and surgery are the tools with which we fight cancers. And these tools often incur collateral damage: baldness, infertility, scars, to name a few. We do not as readily talk about the treatment of cancer because we are still holding out for a cure.
In that respect, Jolie’s op-ed is both a success and a failure. It is a success in that it talks about the treatment. She is telling women everywhere that her decision to undergo a mastectomy does not make her “less of a woman”; rather, she writes that she “feel[s] empowered that [she] made a strong choice that in no way diminishes [her] femininity.” Understood one way, she is telling women who choose to have a mastectomy, or who must have one, that they are no less female for doing so. As a man, I do not purport to understand what that means to a woman, but I can imagine that hearing that from a woman who is renowned for her beauty and her femininity can be powerful.
However, Jolie’s piece also fails to face head-on the ugly side of treating cancer. I do not in any way mean to diminish her experience, but her solution was a relatively elegant one (and I hope, an effective one). That is not going to be the case for many women. For one thing, some aspects of the surgery she described (such as the “nipple delay”) are complex, and many women who opt for that surgery may not have the same positive outcome she describes. Second, as several critics have pointed out, a mastectomy is a major surgical procedure that carries with it the same risks of any other major procedure, including the possibility that it will not effectively prevent breast cancer in moderate- and high-risk women.
Until someone of Jolie’s celebrity stature comes forward as an “everywoman,” we are not truly engaged in a frank discussion of cancers and their treatment.
In contrast to breast cancer, with its awareness campaigns, is the shadowy disease of bacterial meningitis. Although many states require college students to be vaccinated against the infectious disease before starting their freshman year, it is not a disease that receives the kind of attention that breast cancer does, particularly given that one strain of it primarily affects a small subset of the population.
According to the New York Times article on the latest New York meningitis outbreak, “the bacteria is [sic] carried in the nose and mouth. Though not as contagious as a cold or flu, it can be spread through kissing, sneezing or sharing a spoon.” From this description alone, bacterial meningitis would seem to be fairly indiscriminate in whom it affects. Indeed, it could have arisen in a church congregation that sips from a common communion cup, or among professional athletes who are constantly in close quarters in a locker room and playing field. However, in this particular instance, it mysteriously seems to target gay and bisexual men. The New York Times article states that seven men have died of this particular strain in New York City since 2010, and the rate of infection seems to have been accelerating over the last few months.
Much like the initial response to the HIV/AIDS epidemic, many people, including gay men, are nonchalantly dismissing the disease as something that afflicts promiscuous gay men who frequent sex clubs and bathhouses—as if it were gonorrhea or chlamydia. However, it is that very attitude that hinders both awareness and the treatment of the disease before it can become an epidemic.
Unlike with breast cancer, there is an effective vaccine against bacterial meningitis. Indeed, college freshman in most states have already been vaccinated against it. But the vaccine lasts only five years, so people who are at risk of contracting bacterial meningitis should get vaccinated (again, in some cases).
Thus, these two examples show how moral approbation and negative public perception—either of a disease itself, or of the treatment of a disease—can hinder advances in its prevention and treatment.
Educating Ourselves About Our Individual Health Risks, and Minimizing Them
Whether you are a woman with a family history of early-onset breast cancer or a gay man in an urban setting, it is incumbent upon you to learn and understand your risk factors, and to take appropriate steps based on your risk. Angelina Jolie acknowledges in her article that based on her family history and genetic testing, she “had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer.” However, she also points out that “the risk is different in the case of each woman.” In other words, many women do not have the risk profile that Jolie has, and preventive double mastectomy is not the right solution for everyone (or, as it turns out, for most women).
In a similar way, if you are a gay man living in New York City, you are statistically at a higher risk for contracting bacterial meningitis, just as college freshman are. To effect positive attitudes toward preventive health measures, we must acknowledge facts in the absence of judgment. Bacterial meningitis is no more a “gay disease” than is the common cold. If we are at higher risk for certain diseases, then it is our responsibility to minimize or otherwise address that risk. In the case of infectious diseases, that responsibility is an ethical one.
In her article, Jolie laments the high cost of genetic screening for factors associated with higher risk of breast cancer. However, as Dr. H. Gilbert Welch points out in a CNN opinion, a strong family history of cancer may be as telling as the genetic test, and is certainly much cheaper to obtain.
One thing that the breast cancer awareness campaigns have accomplished is that screening for cancer now carries little or no stigma, in contrast with sexually transmitted infections (STIs) and diseases that are perceived to be associated with sexual activity (whether they actually are or not). That is one thing that our society will have to change in order to advance preventive health.
Attitudes toward health issues—whether related to cancer, infectious diseases, or other types of illnesses—are constantly evolving, and vary from culture to culture, as well. However, of universal importance is the need to prevent and treat illnesses simply because they are illnesses. There is no place for moral approbation or judgment in the prevention and treatment of disease.