During a holiday break in 2013, I told my mother about my decision to start taking Truvada as PrEP (pre-exposure prophylaxis). I sat on her couch and also explained that I was going to share my PrEP-taking journey on Facebook to educate more people like myself. I waited for an argument to erupt. Discussion about sexual health and freedom were usually met with negative feelings in our household.
“¿Proph-a-que?” she shouted across the room. I replied back with equal intensity: “It’s medication to prevent HIV infection, mom!” Without missing a beat, she fired back with an arsenal of questions: Isn’t HIV medication toxic? Why would you take a pill if you are not sick? How are you going to pay for it? What will people think of you? Do you already have HIV? Each question became more and more saturated with uncertainty, fear, and misinformation. It almost seemed as if I were “coming out” as gay all over again. But why was I having this conversation with my mother in the first place? Let me explain.
I come from a poor Mexican background and rarely talked about sexuality, health care, or preventative medicine. In our household, you would only go to the doctor if you were sick. Going to the doctor also involved spending money and taking time off from work, which potentially meant losing money. We were always trying to make ends meet, so unless your arm was falling off, seeking medical care wasn’t a top priority. Sex was something you learned about on your own, and the gay thing? That was just something the family knew about but didn’t talk about openly.
Growing up under those conditions amid a high-context Mexican culture still influences my adult life today. In the theory of high-context culture, relationships are emphasized, with such matters as tone of voice and facial expressions more important than mere words, giving way to respect—and trust. These cultural differences can influence access to health care.
No matter my age, education, or how progressive I think I am, maintaining a positive open relationship with my family supersedes everything. Even at 28 years old, I was still seeking acceptance. I am just one of many Latinx people who are bound by unique cultural and socioeconomic drivers. These drivers can positively or negatively affect our health outcomes. PrEP access for the Latinx community means attachment to cultural constructs that community educators, health centers, and medical providers are not always familiar with.
For PrEP to be fully realized in the Latinx community we can’t just translate English language resources into Spanish and call it a day. We must reframe the entire conversation to address real barriers many Latinx people face.
At the same time, we must propose realistic solutions starting at the local level involving those who already serve this population. We have the resources to implement PrEP on a larger scale, but we must tailor our efforts to reflect the current needs of Latinx people.
Recent data from Gilead Sciences noted that from 2012 to 2015 over 49,000 PrEP prescriptions were filled at pharmacies across the nation. However, only 12% of those PrEP users were Hispanic. This number did not surprise me. I know firsthand how immigration status, stigma, culture, language, and gender identity can directly affect PrEP uptake in the Latinx community.
Let’s look at one of the largest and most vulnerable groups: The uninsurable undocumented population. Millions of Latinx people are completely shut out of health insurance programs such as Medicaid and the Affordable Care Act (ACA). This group stays largely dependent on community clinics to address their health care needs. However, unless a patient is located in a large urban city, there are very few health centers actually dispensing PrEP in a community clinic setting. To compound the problem, many clinics do not openly advertise to undocumented populations, let alone understand how to implement culturally competent services.
According to the CDC, Hispanics accounted for almost one quarter of all estimated new HIV diagnoses in 2013 (go to cdc.gov/hiv/group/racialethnic/hispaniclatinos). A large portion of that Hispanic population is also undocumented, yet we have no comprehensive health care or sustainable access points for this group, meaning that funds run out and care is discontinued. Basic costs for PrEP include co-pays for doctor visits, routine lab work, and medication. Finding a sustainable payer source to cover these costs is just one part of the equation. Most U.S.-born Latinx people have the ability and luxury to sign up for insurance programs such as Medicaid, ACA, or employer sponsored insurance plans.
However, even if successfully linked to an insurance plan, cultural barriers can still slow PrEP uptake.
For many Latinx people, medical providers are often seen as authority figures and adhering to authority and power is a cultural imperative. Because of this, medical providers will often need to take the lead and initiate conversations about PrEP and HIV prevention.
Activities and decisions among many Latinx cultures are also based on interpersonal, face-to-face relationships. If a bond is not developed from the beginning, a patient may not return for subsequent visits.
A high level of self-efficacy is usually required when requesting PrEP from a medical provider. Yet, many Latinx people come from highly stigmatizing backgrounds where their own sexuality or gender identity may have been scrutinized. For those with a strong attachment to traditional gender roles and expectations comes another set of barriers.
As a result, a Latinx patient may not always possess the confidence or feel the need to advocate for their own sexual health behind closed doors. A deep-rooted fear of judgment or retaliation can sometimes block a Latinx patient from engaging in these types of conversations, if at all. The situation can become a missed opportunity if the medical provider does not fully understand the patient’s sexual risk.
Health literacy and language also serve as a substantial barrier. If a Latinx patient is not able to understand health care systems or communicate ideas using English, PrEP will not appear as a viable option. We must continually explore all of these indicators in great detail, for they become the determining factor on whether the Latinx community will choose to take PrEP and also whether they will properly adhere to it.
HIV care providers have tirelessly worked through the years to ensure that HIV-positive patients stay engaged in care. A similar amount of work will be required to link and maintain HIV-negative patients in care as well. We don’t necessarily need to reinvent the wheel; we just need to tailor our approach to make PrEP relevant to the communities we wish to serve.
It’s also highly important to note that PrEP is not always the best HIV prevention option for every person. By no means should we have an entire Latinx population dependent on biomedical prevention for life. We don’t need to put it in the water.
We do, however, stand to benefit from having an entire population successfully linked to comprehensive health care. The common denominator is ensuring healthier, stronger communities. Even if a patient chooses to come off of PrEP, they leave much more informed and engaged with their health care than ever before.
Now is the time for community educators, health centers, and medical providers to step up to the plate and deliver culturally competent PrEP services. Local leaders can also push local health officials into crafting better policies around PrEP access and engagement. Latinx-based CBO s (community- based organizations) outside of HIV prevention also play a role in PrEP uptake and awareness. In order to make waves, we must change the narrative and develop a new approach. We must bridge alliances, coordinate our efforts, and contribute to a common goal.
The National HIV PrEP Summit (NHPS) is a new NMAC conference that promises to contribute to that goal. Slated for December 3–4, 2016 in San Francisco, the meeting will be a partnership between national and community-based organizations along with health departments to focus on the implementation and infrastructure needed to turn the promise of the science into an effective community HIV prevention option.
Workshop sessions will focus on PrEP access and engagement for various communities of color. Sessions will also cover research, educational campaigns, program implementation, training programs, health care providers, and policy. (To register and learn more go to hivprepsummit.org.)
It’s 2016 and I have gone from educating my mother in her living room, to educating constituents on a national level on how to implement PrEP for people like me. After almost three years, I am still adhering to my own PrEP regimen and believe it or not, my mother has become an active PrEP supporter as well. It took time and education, but she now advocates for health care access and PrEP use within her own social networks.
If my own mom is doing outreach, there is no reason you can’t as well. Let’s get to work and change our approach. We have a community to protect.
KEN ALMANZA is an HIV prevention and health advocate and currently serves as Program Associate for NMAC. Originally from Los Angeles, Ken has worked extensively in communities of color as an HIV/STD test counselor, behavioral intervention specialist, and PrEP navigator. His ultimate goal is to help create safe, healthy environments through open, honest discussion and effective community collaborations.