June 7, 2013
If I hear or read another proclamation about the "HIV treatment cascade" and the need for more research to understand engagement in care, I am going to scream! There, I said it. It seems this cascade -- described initially by Laura Cheever at HRSA and most recently and formally by Gardner and colleagues -- has taken the HIV world by storm. It has captivated the field of HIV practitioners, advocates, researchers and scientists and peppers nearly every lecture at conferences and conversation at the watercooler. But why?
My growing frustration with this new scientific obsession is related to calls for more research to understand and address the cascade. As a CDC-trained epidemiologist, I am a stalwart champion and advocate for research. Research has its place, just not in this area. My experience as a clinician who sees these challenges playing out on the ground day after day has me convinced we don't need more research to explain it or identify interventions. To those who argue for more research, I say: We know these barriers all too well. The cascade describes phenomena we have been witnessing in our daily struggles to link, engage and retain people in care for two decades. Furthermore, the literature is rich with data describing predictors of adherence and barriers to engagement in care, including drug addiction, mental illness and lack of social support. Instead, we need program implementation, policy changes and modification in resource allocation to confront previously identified challenges we have yet to address.
Just last week, a 57-year-old male was diagnosed in our emergency department, but refused linkage because he didn't believe he was HIV positive. Although he was sexually active, he did not consider himself at risk for HIV. A 23-year-old man was diagnosed and linked, but refused medication because he heard "somewhere" the medications would make him sicker than the disease and that, if he ever stopped the medication or missed a dose, he would become resistant to all treatment options and die of AIDS. Finally, a 34-year-old woman diagnosed five years ago was recently linked to care and diagnosed with PCP. She was lost to follow-up for six months and returned requiring hospitalization. She stopped her medication because she grew tired of hiding it from her family. These are the reasons for the gaps in the cascade and the solutions don't require more research. They require services, support and education to address HIV-related stigma throughout the health care industry and within the community.
Adding to my frustration is knowing that we are trapped in a system we created. Funding allocation -- be it governmental or private -- largely does not address stigma, shame and denial. Our priorities are elsewhere and our sights are often set on following specific guidelines, templates and processes and developing deliverables, SMART objectives and beautiful logic models. Meanwhile, the community is wandering around in ignorance about the availability of treatment and the ability to live a normal life with HIV infection.
I recognize that saying the cascade gaps are driven by stigma, denial and shame sounds clichés, and for some it surely elicits eye rolling, but the negative perceptions within the health care industry and the community are directly impacting willingness to test, link, engage and adhere to HIV care and treatment. So, what are we going to do about it? We can never know everything about the gaps, but we already certainly know enough. Let's change the way we are talking about this cascade. Let's talk about structural interventions like implementing strategies to normalize HIV testing and facilitate linkage to care in primary care and other medical settings. Let's create sustainable collaborations with mavens and visible people like actors, hip hop artists, athletes and elected officials to improve HIV literacy. Let's change our approach to and funding strategies for HIV-related training to achieve more actionable and concrete outcomes that impact the way people think about and address HIV.
I know addressing community and provider HIV literacy is not as sexy as an observational or randomized study. Doing so pushes us beyond our comfort with the status quo and the familiar. We excel at identifying and characterizing a problem, only to then call for more research to further characterize the problem. We have to change. We speak eloquently about ending the epidemic and having the tools to do so. But if we really mean and believe what we are saying, we have to change and operationally address these challenges. If we don't, we can forget ending the epidemic. Then I really will have something to scream about.