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Dr. Ana Langer

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On the 20th Anniversary of World AIDS Day, Turning the Corner for People Living with HIV

Posted: 12/01/08 10:07 AM ET

Today [December 1], people across the globe will rally around World AIDS Day. An AIDS awareness bike marathon will wind its way through the streets of Cairo. Zagreb will host a massive rock concert. And hundreds of activists will gather for a candlelight memorial on Gorée Island in Senegal.

A lot has changed since the World Health Organization designated the first World AIDS Day 20 years ago. Back then, 5 to 10 million people were thought to be infected with HIV worldwide. Today that number is estimated at 33 million.

One of the reasons for this is the increasing availability of life-saving drugs, so that more people are living with -- instead of dying of -- HIV. Without a doubt, this is a sign of hope. Although access to these drugs still eludes millions, we're making progress.

Yet as people live longer with HIV, new challenges have emerged. Chief among them are the effects of social stigma and discrimination against people with HIV, which can inhibit individuals from seeking care they need. The theme of this year's World AIDS Day -- leadership -- can be a make-or-break force for ensuring that everyone, regardless of his or her health status, has access to health care and quality of life.

Across the world today, many people still believe that HIV and AIDS are exclusive to injecting drug users, sex workers and men who have sex with men. The invisibility of those living with HIV, combined with lack of information, breeds fear and misunderstanding about how HIV is spread, leading to shame and misplaced blame. Though attitudes may have grown more accepting in some regions of the world, social stigma remains a serious barrier to people getting tested and treated in many others.

In addition, because contracting HIV used to be a death sentence, doctors and other health workers historically treated it in isolation. One result is that huge investments have been made in state-of-the-art HIV treatment facilities in some countries without fully accounting for family planning and other reproductive health care needs.

These dual challenges, social stigma and dated health approaches, reaches a crucible in the case of adolescent girls and women. Young, heterosexual women account for the greatest share in new infections. Just as women are physiologically more susceptible than men to HIV infection, they also bear a disproportionate brunt of the discrimination against people living with HIV. Women are more likely than men to be labeled as promiscuous, blamed for spreading the disease, and prevented from having children.

Within the healthcare community, the very professionals who women with HIV turn to for support are often the perpetrators of this discrimination. Negative attitudes toward women living with HIV were widespread among doctors and nurses in places like Brazil, Ethiopia, Ghana and Ukraine, Engenderhealth has found. This ranged from the belief that women with HIV should not have sex (even if married) or get pregnant, to the fear that a mother could pass the virus to her baby or leave her children orphaned -- despite that fact that modern medicine makes it entirely possible for them to give birth safely to healthy babies.

The reality is that millions of people now live with HIV as a manageable illness. This means that we must now consider their quality of life, and their right to live life to the fullest -- including having a fulfilling sexual life and, for some women, becoming mothers.

This is why leadership is so critical more than ever.

For health professionals, leadership means being more respectful when caring for people living with HIV. Pilot programs in places like Uganda and India have successfully integrated HIV services with other aspects of sexual and reproductive health care. Doctors have been trained to inquire non-judgmentally whether their patients with HIV want children, and then help them either prevent pregnancy or deliver a healthy baby.

For policy-makers, leadership means passing laws that crack down on discrimination against people with HIV and making treatment more accessible. Leadership is establishing policies that ensure universal access to life-preserving antiretroviral therapy. It means investing in innovative programs that have successfully integrated HIV with sexual and reproductive health and gender equality programs. For policy makers and health professionals alike, leadership means viewing people living with HIV as human beings first, not merely as their viral counts.

The latest chapter in the AIDS epidemic is this: Living with HIV is not an oxymoron, but a reality. No doubt, we must continue expanding access to medicines, treatments, and to preventive measures. But for those who have regained health, we must make certain that they can plan their futures with freedom and dignity. The next wave of HIV care and treatment is ensuring that people living with HIV not only survive, but that they thrive -- along with their families and communities.

Ana Langer, M.D. is the President of EngenderHealth