Twenty-four years ago, Maria Godlevkskaya was in a coma in a hospital in Russia, her immune system failing without HIV treatment. She was diagnosed with the virus five years ago. Fast forward to today and not only does Maria lead a full and healthy life, but she also hasn’t passed the virus on to her son.
At the time Maria was diagnosed, at the turn of the millennium, HIV treatment was largely still in its infancy and not widely available. For millions of people around the world, HIV was a death sentence – and it remains life-threatening for millions more today. HIV/AIDS has claimed more than 40 million lives since the epidemic began in the 1980s, and this is probably an underestimate. Maria considers herself extremely lucky. His survival hinges on two things: access to high-quality care and acceptance by doctors, family and friends.
The WHO European Region, which includes 53 countries across Europe and Central Asia, has made significant progress in the fight against HIV. Medically, we have all the tools we need. Once a person gets tested for HIV, health systems in our region can diagnose (some faster than others) and get people on treatment, which is almost always available and offered free of charge.
So why are only 72% of people living with HIV (PLHIV) in our region aware of their status? 50% of them were diagnosed late. We fail to reach people in time and this trend has not changed for 10 years. What is happening in a highly developed region with high clinical standards?
The sad truth is that the biggest and most stubborn obstacle to ending AIDS is not medicine. It is persistent HIV-related stigma and discrimination and criminalization of HIV transmission and behaviors that derail prevention efforts and prevent people from seeking diagnosis and care.
In a European region where advances in treatment and care have extended the life expectancy of people living with HIV to the point where it is effectively a chronic condition like diabetes or hypertension, we urgently need to address the pervasive stigma that continues to prevent the region – indeed the world – from achieving the global goal of ending AIDS as a public health threat by 2030.
Stigma and discrimination have long created barriers. For example, more than one in five (21%) people living with HIV report being denied health care in the past year. Meanwhile, stigmatizing attitudes contribute to physical and economic violence against people with HIV and affect their education and employment opportunities.
Discrimination can take many forms, destroy lives and erode hard-built trust in health professionals and the health system that can take years to rebuild.
Vulnerable populations that remain at the center of the epidemic often bear the brunt of society’s intolerance.
I have heard countless stories.
For example, in one country, a 19-year-old woman who was born with HIV faced bullying from her community and was often “outcasted” as HIV-positive without her consent.
Naming and shaming countries, governments or health workers is not helpful because discrimination can – and does – rear its head in any country and society, even those perceived as open and liberal.
We need to stand up for PLHIV and challenge the entrenched attitudes and structures that can make their lives so difficult. Change Yippee possible, but only if we fight for it.
To end AIDS as a public health threat by 2030, we must:
- Put people first. We must make our health and community systems accessible and inclusive for the most marginalized.
- Raise awareness and debunk persistent myths about HIV. Education remains our most effective weapon against stigma, including comprehensive age-appropriate sexuality education that provides young people with a foundation for empathy, life and love.
- Promote policies that protect the rights of people living with HIV and fully eliminate discriminatory laws and practices.
- Create safe spaces where individuals can share their experiences without fear.
- Encourage regular testing and early treatment. When we normalize HIV testing alongside testing for other sexually transmitted infections, we reduce stigma.
- Highlight stories of courage, resilience and overcoming stigma. Let’s celebrate the strength of those who have overcome adversity and allow them to flourish as champions of change.
Not long ago, I had the privilege of speaking with Maria, who now lives in Germany, about serving as an advocate for people living with HIV. She turned her HIV diagnosis more than two decades ago into a phone call, creating Russia’s first network to support women affected by the virus. Her strength and courage continue to inspire me, and her story—along with many others—should give us all hope for a better future, even in the face of dire challenges.
“My first visit to the AIDS center in St. Petersburg was full of attention, care and sympathy. From those first days, both my doctor and my family treated me with respect,” she told me. “I wish it would be like that for every young person who joins our ranks. I want everyone who is afraid, anxious and trying to understand to have access to a peer counselor so that the journey from the darkness of fear, loneliness and uncertainty can walk together hand in hand to the light of knowledge. and self-confidence, an HIV diagnosis does not make a mistake. And I wish this feeling and knowledge to everyone living with HIV.”
Keeping the promise to end AIDS is not just a medical goal; it is a human rights imperative.
We can be the generation that eradicates the stigma of HIV, embraces compassion, ensures full access to diagnosis and treatment, and paves the way for a healthier and more inclusive world. That’s the only way we’ll end AIDS – once and for all.
