Skip to content

EpiC Blog

PEPFAR, USAID, MOSAIC
  • Home
  • About
  • Events
  • Resources
    • Social & Behavior Change
    • Mental Health and Psychosocial Support
    • HIV Trainings, Tools and Guides
    • Decentralized Drug Distribution
    • HIV Success Stories
    • HIV Country Resources
    • COVID-19 Trainings, Tools and Guides
    • COVID-19 Success Stories
    • COVID-19 Country Resources
  • COVID-19
  • Follow Us
Search
START TYPING AND PRESS ENTER TO SEARCH
  • Home
  • About
  • Events
  • Resources
    • Social and Behavior Change
    • Mental Health and Psychosocial Support
    • HIV Trainings, Tools and Guides
    • Decentralized Drug Distribution
    • HIV Success Stories
    • HIV Country Resources
    • COVID 19 Trainings, Tools and Guides
    • COVID-19 Success Stories
    • COVID-19 Country Resources
  • COVID-19
  • Follow Us

One major reason the AIDS epidemic isn’t going away

August 20, 2018

Written by Lindsey Freeze, Brand & Creative Services Manager, IntraHealth International

This blog post was first featured on IntraHealth International’s VITAL blog.


dany

Photo: UNICEF/Vlasova

A few years ago Dany Stolbunov, now 20, told his doctor in Ukraine that he wanted to go to medical school. He was sharing his ambitions with someone he admired and trusted, who he thought might believe in him, the person responsible for his care.

“I told him I wanted to become a physician, too.”

“You can’t be a doctor,” his doctor said. “You have HIV.”

Dany was born HIV-positive, and his father died of AIDS when he was 8. That’s when Dany learned he had the virus, too.

His doctor’s response wasn’t a revelation; it was discrimination. And it was related to a stigma that’s endemic in health care settings even today and a major barrier to HIV prevention and treatment services in every region of the world. Discrimination from the very providers trained to diagnose, treat, and help patients manage the physical, social, and emotional issues related to a highly-stigmatized chronic infection.

Dany is part of a new generation of young people living with HIV who are becoming adults—and advocates for less discriminatory care.

“We are the first generation born with HIV who are growing up and can openly speak about it,” he said at the International AIDS Conference last month in Amsterdam.

UNAIDS estimates that every hour, 75 teenagers become infected with HIV, and five will die from AIDS-related illnesses. It’s the leading cause of death among adolescents in Africa, and girls age 15-24 are most affected. But most patients who adhere to treatment can expect to live for decades—50-plus years, on average, after diagnosis. Full lives.

Helping teenagers navigate health care, relationships, and their sexual and reproductive health without fear or shame is a universal challenge and imperative to curbing the epidemic.

At a time when cheap pharmaceuticals can suppress the virus and radically prolong life with minimal side effects, and the science has definitively proved that anyone on treatment with an undetectable viral load has a zero percent chance of passing it on—knowledge that should theoretically liberate those living with HIV from stigma—there are persistent structural barriers that keep people from the services they need. Barriers that can take years or even decades to break down, such as bias among health workers like Dany’s doctor and the pervasive lack of training that leads to clinical interactions where clients feel scared, ashamed, or even resolved to never come back.1

Of the nearly 37 million people living with HIV, 48% are virally suppressed. But 15 million are not on treatment, and over 11 million haven’t been tested, many fearing that a positive diagnosis would bring shame and alienation.

Often the stigma people experience is less direct than what Dany described. It’s the waiting in a separate line for your antiretroviral drugs (ART), so everyone knows you’re infected. Or the nurse who uses gloves to examine you but not the other patients in a ward. The uncomfortable interactions. The constant lapses in privacy and confidentiality. In some cases, it’s much worse, like being openly refused care or threatened with criminal prosecution for sex work, drug use, or homosexuality.

For many living with HIV, it’s too much to bear. To begin with, they may be travelling long distances to use health facilities where they won’t be recognized in their community. That’s what Luis* did for years in Western Guatemala, but it was expensive, inconvenient, and sometimes dehumanizing. In rural Uganda, Mrs. Pontoshi faced constant, overt discrimination from health workers no matter where she went for care.

So people stop going.

“This pattern of linkage to care followed by low engagement and viral suppression happens in various countries, cities, and populations across the globe,” said David Malebranche, a doctor and professor at Morehouse School of Medicine in Atlanta who specializes in HIV prevention and treatment and racial health inequities.

The problem is we’re not paying enough attention to provider attitudes and institutional discrimination as a strategy in reaching epidemic control.

“If the major drop-offs happen after people are linked to care, why don’t more studies explore what is happening within medical settings?” he says. “Why aren’t we studying what they are experiencing in our clinics as a means to identify clinic-level facilitators and barriers to ART and viral suppression?”

If you ran a restaurant where only 40% of patrons returned after their first visit, would you commission a study to see what was wrong with your customers, Malebranche asks? Or would you look within at how you’re running the business, at the quality of what you’re offering, the attitudes of your staff?

“Our social and humanitarian advances lag woefully behind our scientific ones,” he says. “Medical communities are microcosms of larger society. If societal stigmas and other institutional issues are plaguing us as gatekeepers to scientific advances, then communities won’t consistently access these venues, and we won’t get to zero new infections anytime soon.”

And stigma hardly just affects those already living with HIV and AIDS. We know discrimination inhibits access to prevention and testing services. For sex workers. Gay men. Drug users. Transgender individuals. Sexually active teenagers. Globally, these groups are the most vulnerable to acquiring HIV and the most discriminated against in health care settings.2

Until there’s a vaccine or cure, the only hope for curbing the epidemic relies on people having access to and using high-quality prevention and treatment services. Investing in strategies to eliminate institutional practices that cause shame, fear, and distress in medical settings and educating health workers on privacy, cultural sensitivity, and psychosocial support would pay dividends across the spectrum of care.

A colleague who’s spent decades in the field pointed out that with far simpler treatments—just one pill a day for millions of people on first-line therapies—nurses and physicians are spending less time managing complicated HIV drug regimens and more time providing counseling and psychosocial support. But perhaps their curricula and training haven’t caught up. We should capitalize on some of this freed educational load and introduce more comprehensive psychosocial training and anti-stigmatizing strategies into health workers’ certifications.

The good news

Science is on the side of anyone fighting HIV stigma. We just have to get the word out. The message and rigorous proof behind the Undetectable=Untransmittable (U=U) campaign are essential for addressing HIV stigma in all its forms—not just in health care settings—and encouraging people with HIV to start and stay on treatment.

“U=U sets us free,” said Bruce Richman, executive director of the Prevention Access Campaign, at the conference. “It addresses one of the most durable aspects of stigma—that chronic infection signifies chronic infectiousness.”

Amid a global shortage of health workers and persistent misconceptions about HIV, we need more HIV-positive young adults like Dany—not fewer—becoming doctors and other health service providers to transform care and end stigma at a major source.

People are the heart of stopping AIDS. The choices and careers of clients, activists, scientists, and caregivers have changed the course of the disease, and history. Imagine what the next generation can do.

Share this:

  • Tweet

Post navigation

Previous

New journal supplement on key populations is here!

Next

Custom Indicators Track Online Outreach in Jamaica

Get Subscribed

Enter your email address to subscribe to this blog and receive notifications of new posts.

We don’t spam! Read our privacy policy for more info.

Check your inbox or spam folder to confirm your subscription.

Archives

Search by Category

Recent Publications

  • EpiC HIV Factsheet
  • EpiC COVID-19 Factsheet

Follow Us

  • Twitter
  • Facebook
  • Link

This blog is managed by the EpiC project and dedicated to sharing stories, events, and resources from HIV epidemic control efforts around the world.

© EpiC BLOG 2022

  • Home
  • About
  • Events
  • Resources
  • COVID-19
  • Follow Us
Assessment

A questionnaire or “screener” meant to be used with individual patients in a clinical setting to screen for, help diagnose, or monitor progress for individual mental health conditions.

Intervention

Larger packages or broader-reaching resources that describe actions or activities to be implemented. These may be appropriate for individuals, groups, and/or programs.

Anxiety

Feelings of fear, dread, and uneasiness that may occur as a reaction to stress. Anxiety can be a symptom or a feeling; it can also be a clinical diagnosis of a mental health condition.

Burnout

A state of emotional, physical, and mental exhaustion caused by excessive and prolonged stress, typically related to one’s work, that is not managed well. Burnout is considered an occupational phenomenon.

Clinical diagnoses

Mental or neuropsychiatric disorders, or disruptive, unusual, or maladaptive behaviors that have been evaluated and diagnosed by a trained medical professional.

Depression

A mood disorder that causes a persistent feeling of sadness and loss of interest.

Disability

A physical or mental condition that limits a person’s movements, senses, or activities.

Insomnia

A sleep disorder, or disordered sleep pattern, characterized by trouble falling and/or staying asleep.

Overall well-being

The state of being comfortable, healthy, or happy; judging one’s own life positively; generally, “feeling good.”

Post-traumatic stress (PTS)

A normal adaptive response to traumatic or stressful life events that can result in a wide range of distressing symptoms. Post-traumatic stress disorder (PTSD) differs from PTS and is a clinical diagnosis.

Self-efficacy

An individual’s belief in their capacity to act in the ways necessary to reach specific goals.

Self-harm/suicidality

Deliberate injury to oneself as an emotional coping mechanism, ranging from cutting oneself to suicide. Expressions of self-harm and/or suicidality are usually considered an emergency and should be assessed and managed by a trained professional.

Social support

The perception that one is cared for, has assistance available if needed, and that one is part of a supportive social network.

Stress

Any type of change to one’s internal or external environment that causes physical, emotional, or psychological strain. “Managing stress” is an effort to return from this state of strain or disturbance to homeostasis or well-being.

Substance abuse

Use of a substance (usually drugs or alcohol) in amounts or by methods that are harmful to oneself or others. Substance use disorder (SUD) and addiction are distinct clinical diagnoses.

Trauma

Lasting biopsychosocial and/or emotional response that often results from experiencing a terrible event such as an accident, crime, military combat, or natural disaster, or a series of chronic traumatic events like persistent abuse or neglect.

Program beneficiary

Individual who receives program services; an entire group or population may be the recipient of services.

Service provider

Individual who directly provides services to another individual, group, or population (the “program beneficiary”) through a program.

Privacy Policy