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Don't Lose Another Generation

November 15, 2010

For our World AIDS Day 2010 section, we wanted to capture the diversity of the AIDS community. So, we reached out to people across the world -- mostly those who have never written for us before -- and asked them to guest blog. These columns are written by people who are living with HIV, have been affected by HIV, or work in the field.

Eric Nelson

Eric Nelson

As we prepare for World AIDS Day here in Chicago, I imagine that in the '80s when church and other volunteers came together to help people with HIV/AIDS, they never would they have imagined that organizations like Better Existence with HIV (BEHIV) would be needed more than ever two decades later.

But that is the reality of the HIV pandemic. More people than ever are infected-an estimated 1.7 million Americans are infected, and over 565,000 people have died from complications to AIDS since the epidemic hit in the '80s. And what's scarier is that one-quarter of people infected with HIV do not know they are positive. That means they aren't taking medication to keep themselves healthy and they may not be taking precautions to prevent infecting others.

AIDS awareness reached its zenith in the 90s, keeping the topic on the national news and in front of people. Activists fought for quicker access to better drugs and you couldn't turn around without seeing a red ribbon. But over the years that visibility has slowly faded.


What happened?

It was the life saving drugs that happened. These medical advances allowed people to live with HIV and while the meds didn't cure HIV, they kept it in check. Kept it from producing and destroying other cells. They kept people alive.

They have kept people alive to love their family members, friends and neighbors. They have kept people alive to work, make a living, get married and have kids. And we are grateful for these advances, but there have been consequences.

Since HIV is now manageable and doesn't necessarily mean you are going to die from it, people have moved on and have grown complacent. The red ribbons have disappeared, and funding for prevention and education has become scarce. But people are still being infected. And who is being infected? Young people. Your kids. Your neighbor's kids.

In Chicago, half of all new HIV infections occur in people ages 13-25. If we don't do something, we are going to lose a generation of people to this disease. Another generation.

So what do we can do?

BEHIV logo

Better Existence with HIV (BEHIV) logo

BEHIV commitment to fighting the epidemic consists of providing resources to help educate, prevent and support. Each year, we provide approximately 1,000 free HIV tests. We want to put a dent in that figure of one quarter of infected people not knowing they have the virus.

If people know they are infected, they can get treatment and they can take steps to make sure the virus stops with them. They can protect their spouse or partner from becoming infected. They can do their share to stop the virus' spread.

We educate. To stop an epidemic that spreads almost exclusively through careless action, you cannot deal simply with people who are already infected. You must educate people who are not infected on how to protect themselves.

We teach young people that adult acts have adult consequences. Beyond abstinence and safer sex, we discuss communication, peer pressure, alcohol and substance use, the need to know your status and the responsibility they have to ask a potential partner about their status. And over the years we have seen dramatic changes in the impact the virus has had on young people's lives. Before, when we asked if students knew anyone with HIV or AIDS, we often heard about an uncle or an aunt or a parent who had died. But now, we hear about friends, fellow students and siblings who are infected. Infected, not dead. But infected at 17, 14 or 19.

Our case management team helps hundreds of people each year access medical, dental and other services so people have the resources they need to live their life.

Our housing program provides safe, affordable places for people to live, so they can focus on maintaining their medication regimens and work toward self-sufficiency.

Our counselors give HIV+ individuals and their loved ones the skills and assistance needed to deal with the fear, isolation, doubt and insecurity that still often comes with an HIV diagnosis.

Our massage and art therapy programs provide physical and emotional relief from the often debilitating effects of the virus and the medications.

Twenty one years is a long time for any agency to be in existence and we are very proud of the care we provide to help people live healthier lives. But we wish we weren't here. We wish we could close our doors because HIV awareness and education was plentiful and comprehensive and people weren't getting infected. We wish there was a cure and clients struggling now could have bodies free from this invader.

But for now, we work in today's reality. And, if need be, in 2030, we will commemorate another 21 years of service and commitment and compassion. Let us hope that isn't the case.

Nelson is the Executive Director of Better Existence with HIV (BEHIV) in Chicago, Illinois.

This article was provided by TheBody.

Reader Comments:

Comment by: John E. (St. Louis, MO) Sat., Dec. 11, 2010 at 11:23 am UTC
We were shocked Rock Hudson was sick with AIDS, then outraged he & other People of Importance & Wealth could fly to Paris for a weekend at Spa AZT. Nobodies like us didn't even know AZT existed, let alone have the means & connections to get it. The biomedical community was in no rush- didn't need to be. They went about business as usual, erring on the side of caution, keeping their cards close to their chests. They couldn't be sure. Those who needed to be were in a hurry to do something- anything. Waiting meant dying. And that, children, is where ACT UP came from.
Last month we found out what the biomedical community and other People of Importance and Wealth have known for a decade: Pre-exposure prophylaxis (PrEP) works. Doctors & nurses have been using HIV meds as post-exposure prophylaxis after needle sticks, etc. for a decade. Some started taking meds regularly, just in case. It worked.
They also found that when one's infection is fully suppressed (by definition), there is no detectable virus in blood, semen or other body fluids. If there's no virus in one's body fluids, there's no way to pass it to someone else. In other words, people with undetectable viral loads are not contagious. Hence the excitement about "treatment as prevention."
Yet the HIV Establishment & People of Importance & Wealth continue with business as usual again. Why rush? (They've been making tons of money with things as they are.) They just can't be sure yet. There could be a small, theoretical possibility of virus getting through from the undetectable to the uninfected. PrEP really only works if you take meds every day as directed. There might be side effects, development of viral resistance. Think about the cost. Stick to using condoms. (Does ANYONE actually use those any more?) Generic Truvada costs less than $100 A YEAR in India. But pharmas' patent rights outweigh our rights to live. Give condoms to kids? That'll just encourage them to have sex. Ditto for PrEP. We need ACT UP again.
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