Stigma: The invisible barrier to solving the AIDS epidemic

Today is World AIDS Day and we pause to remember the millions of lives lost around the world to HIV and AIDS. The celebrities such as Freddy Mercury; the athletes such as Arthur Ashe; the activists such as Ryan White and Elizabeth Glaser and the countless sons, daughters, husbands, wives, brothers, sisters, aunts, uncles, nieces, nephews, neighbors and friends who are mourned by those who loved them. 

It’s been 35 years since scientists discovered the virus that causes AIDS. However, we are still learning about the disease. Just a few weeks ago, news broke that research scientists had discovered a new strain of HIV. This is the first time since 2000 that a new subtype of HIV-1 has been identified. It adds to our store of knowledge about HIV and how it evolves. 

Thanks to advances in research like this and treatment, AIDS is no longer considered a death sentence. Close to 38 million people around the world are living with HIV. However, an estimated 8 million of these people are not even aware they are infected — and many are in communities of color that still bear the highest burden of new infections. 

What is keeping them from diagnosis? Fear. Shame. Stigma. 

“Stigma towards people living with or at risk of HIV drives acts of discrimination in all sectors of society —from public officials, police officers and health-care workers to the workplace, schools and communities,” a UNAIDS report on the topic titled Confronting discrimination: overcoming HIV-related stigma and discrimination in health-care settings and beyond, explains. “In many countries, discriminatory laws and policies reinforce an environment of violence and marginalization. This stigma and discrimination discourages people from accessing health-care services, including HIV prevention methods, learning their HIV status, enrolling in care and adhering to treatment.”

Unfortunately, all the science, discoveries and health care advancements in the world cannot overcome the stigma surrounding HIV and AIDS. Stigma is a dangerous byproduct of misinformation; and in many areas of the world, including right here in the United States, it keeps people away from diagnosis and care. According to the UNAIDS report, “People living with HIV who perceive high levels of HIV-related stigma are 2.4 times more likely to delay enrollment in care until they are very ill.” 

“When people living with, or at risk of, HIV are discriminated against in health-care settings, they go underground. This seriously undermines our ability to reach people with HIV testing, treatment and prevention services,” says UNAIDS Executive Director, Michel Sidibé. “Stigma and discrimination is an affront to human rights and puts the lives of people living with HIV and key populations in danger.” 

If we want to make progress on goals to end the HIV epidemic by 2030, we must change the narrative surrounding HIV and all infectious diseases. When people fear being ostracized, they are less likely to get tested and know their status. Erasing the stigma will go a long way toward erasing the disease.

AIDS provides no reason for fear, discrimination or exclusion. Instead, its continued prevalence should motivate our renewed commitment to increased diagnosis and treatment and, most importantly, the extension of compassion, understanding and support to those who have this disease.

World AIDS Day is commemorated every year on Dec. 1. The theme of World AIDS Day 2019 is “Communities make the difference.” This battle is far too large for one group, or one company, to take on alone. It will take a community of advocacy, support and care to end the AIDS epidemic — and the stigma that surrounds it.

Stephen S. Tang, Ph.D., is the president and CEO of OraSure Technologies, a leader in the development, manufacture and distribution of point of care diagnostic and collection devices and other technologies designed to detect or diagnose critical medical conditions.