In President Obama’s State of the Union address last month, he announced that he was launching a new precision medicine initiative, noting that this initiative will “give all of us access to the personalized information we need to keep ourselves and our families healthier.” In essence, precision medicine can help doctors deliver tailored medical care that is matched to our genotypes and personal histories. Precision medicine is also known as personalized medicine; it is an approach to medical care that allows doctors to provide customized, “bespoke” medical treatments.
As a society we value products and goods that are tailored to our personal preferences. But we cannot precisely (or personally) connect to our prevention needs, our treatment options, and our basic health concerns if our doctors don’t ask us questions. I’m talking about tough questions. Questions on topics that we don’t discuss with most people. Questions about things that even our genes can’t reveal, but that nonetheless affect our health. Call them “precision questions.”
For example, to effectively prevent and treat HIV and AIDS, precision medicine will do nothing unless doctors can handle broaching precision questions about sexuality.
When I was growing up as a gay kid in the 1990s, HIV was a health problem that elicited a lot of panic (both rational and irrational). In the early years of the epidemic, it felt as though being gay—a personal attribute that may have a genetic component—was the reason you got HIV and eventually died of AIDS. We now know that being gay doesn’t mean you get AIDS; high-risk sexual and drug use practices make one most susceptible to HIV and AIDS.
As Obama remarked in a White House event to launch his precision medicine initiative, understanding genes may help us treat HIV more effectively, identifying those individuals for whom new antiretroviral drugs will work best, or those who may experience negative side effects from particular treatments.
But how will precision medicine help us get new medications to those who need them most? How will it make sure we can best identify those whose behaviors place them at risk for acquiring or transmitting HIV, or those who may be unaware of their infection and thus not on life-saving treatments that reduce transmission of the virus?
Public health researchers have noted that in order to curb the HIV epidemic in the most vulnerable of groups in the United States—notably young black gay men—we must improve access to high-quality health care and routine HIV testing and treatment. In particular, we must improve access for those who are poor and of color—people who are most often marginalized in the U.S. health care system. But first, health care providers have to ask men precision questions regarding who they have sex with and the kinds of sexual behaviors they engage in. That’s where this access begins.
Blacks have less access to care in the United States, and black gay men report poorer-quality experiences in receiving health care than white gay men. And this is a major contributor to persistent racial disparities in HIV and AIDS prevalence, new infections, and death rates. The problem, one study shows, stems from the unwillingness of doctors to ask precision questions about sex. In that study, even when black gay men reported disclosing their sexual behaviors to providers, they were not offered routine HIV testing.
It’s not just that you ask, but how you ask. Many gay men of color distrust the health care system. The legacy of Tuskegee and more recent controversies, including the handling of the U.S. Ebola cases, suggest that this distrust is not unqualified. And research has shown that patients of color experience significantly more negative interactions with health care providers compared with white patients. Moreover, black gay men have noted feeling stereotyped and uncomfortable when discussing matters of sexual health with health care providers. We should expect doctors to be able to inquire about sexual health in nonjudgmental, open, and empathetic ways.
This is not to say the burden rests solely on providers. Internalized homophobia and community-level stigma around homosexuality may prevent many black gay men and other men who have sex with men from disclosing—much less discussing—their sexual behavior with health care providers, even when specifically asked about it. And those of us working on the issue of HIV and AIDS know that stigma, while easy to identify, remains perhaps the most significant challenge to comprehensively addressing the HIV epidemic in the United States and globally.
Precision medicine has the potential to help treat many diseases, improve outcomes, and enhance overall well-being in people. But it can’t do anything if we don’t have a medical system that provides comprehensive health care. And that means having health care providers who can reach black gay men, engage with them around health, and communicate about their sex lives.
I am not a prototypical example of a black gay man living in New York City. I am well-educated, have access to health insurance, and feel empowered to obtain the best health care that is available to me. But in more than 15 years of living in this incredibly public health–oriented city, it is only in the past three years or so that I identified and established a relationship with a primary health care provider who is aware of my sexual identity and with whom I feel comfortable talking about my sexual behavior. (Not a provider who takes an active role in asking me about my sexual behavior, however, because that is a unicorn I still have yet to find.) So if an empowered, privileged, and resource-rich black gay man like me is still searching for the nirvana of health care, what is to be said of the disempowered, poor, uninsured black gay men, who represent the majority of black gay men in New York City and the United States?
Personalized, precision, tailored medicine only works for the most vulnerable when structural deficiencies in our health care system are addressed. These structural deficiencies can only be mitigated through public health policies, not personalized medical treatments. Precision medicine can only be precise in treating diseases such as HIV—and other sexually transmitted infections and stigmatized diseases—when health care providers get comfortable asking precision questions.