Breakthrough Patient Recruitment

: International Conference on Stigma Aims to Change the Attitude that Spreads HIV

International Conference on Stigma Aims to Change the Attitude that Spreads HIV

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Also contributing to this post were: Carmen Baba, Marco Zurita, and Jennifer Beaudet .

 

As part of our effort to further understand the challenges and struggles of the patients we are attempting to recruit, the entire PACT team attended the third annual International Conference on Stigma November 30, 2012, at Howard University in Washington, D.C.

 

The conference, sponsored by the Coalition for Elimination of AIDS-related Stigma (CEAS), sought to address the issue of HIV- and AIDS-related stigma, which the group believes prevents many infected people from getting tested, getting treatment or adhering to treatment regimens after they've been diagnosed, and sharing their diagnosis with loved ones. Furthermore, they believe that stigma is driving key contributor to the HIV epidemic. One of the most poignant quotes of the conference came from Dr. Sohail Rana, professor of pediatrics at Howard University and key organizer of the conference, as he noted, "it doesn't have to be that way."

 

Representatives from all over the world, including international dignitaries such as the consulate from Peru and ambassador of Grenada attended the conference, giving it an international feel and signaling that the world is ready to have a discussion about the stigma that surrounds those with HIV and AIDS. There were also representatives from the White House Office of National AIDS Policy, the Centers for Disease control (CDC) and the District of Columbia Developmental Center for AIDS research (DC DCFAR). Their collective message-broadcast to the world via webcast by WHO-was clear: Something has to change.

 

Talking About Stigma is the First Step Toward De-stigmatizing HIV

 

It's encouraging that people are discussing the issue of HIV- and AIDS-related stigma, and it's certainly a discussion worth having. Although a diagnosis of HIV is no longer the death sentence it was when the virus emerged three decades ago, the persistent stigma attached to the disease remains a significant barrier to treatment and proper health care.

 

According to a report released in 2009, Washington, D.C. has the highest HIV infection rate in the country-around 3 percent. The CDC and the World Health Organization (WHO) consider 1 percent the point of a "severe epidemic." Although the HIV infection rate in Washington, D.C. is high, the district does an excellent job of helping HIV and AIDS patients work through the health care continuum compared to other regions.

 

But gaps in the system persist. Approximately 50 percent of known HIV-infected individuals are not engaged in regular HIV care after being diagnosed. Why do we lose these patients? How can we get them back? And how can we keep the ones we have? If people are too afraid to reveal their diagnosis to those in their lives, then there are real-and sometimes even criminal-consequences.

 

For example, one topic discussed at the conference centered on the concept of "criminalization." If an individual knows he or she is HIV positive and has sex with someone who is unaware of their status, they can actually be convicted if their partner becomes infected. This fear of prosecution may make someone more reluctant to reveal their status, and this is its own kind of stigma. Through our work with the PACT program, we have seen such cases. This is an issue that's not often discussed but one deserves more attention.

 

This issue of HIV- and AIDS-related stigma is one of many complex socioeconomic issues that PACT teams members face as we discuss health care options with patients, including options for clinical trials. Understanding-and helping to break down-stigma associated with this disease is critical to helping individuals with the disease begin the process of accessing and sticking with the care they need. We are sensitive to these issues, but what about the rest of the health care system?

 

More Needs to be Done

 

There needs to greater focus on strategic goals such as: reduce infection, decrease HIV disparities, and implement comprehensive health care. President Obama's Affordable Care Act will help address disparities in health insurance coverage for infected individuals, including those populations most affected-minorities, women, and people with lower socioeconomic status and access to services. But, as Dr. Rana commented during his closing remarks, more funding for stigma research is needed. That's the only way forward. We're taking small steps in the right direction. Let's keep moving forward.

 

 

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