This won’t be the AIDS-free generation

— He was just 18 years old when he got the news. It was the summer before his senior year in high school.

“I had a fever of 103,” Bryan Seth Johnson said. “My body was hurting; I wasn’t eating, couldn’t hold down food. I just felt weak all the time.”

He went to the hospital, told them he was having difficulty swallowing and was treated for tonsillitis. But he didn’t have tonsillitis.

Johnson had the human immunodeficiency virus, better known as HIV.

Metro TeenAIDS offers free HIV testing through its RealTalkDC program.

(Courtesy Metro TeenAIDS)

Metro TeenAIDS offers free HIV testing through its RealTalkDC program.

“I was basically in shock, because the guy I got HIV from works in the HIV-prevention field,” Johnson recalled. “He deleted me from Facebook and basically cut all communication out.”

At the time, Johnson was getting tested for sexually transmitted diseases every three months at SMYAL, an organization dedicated to supporting lesbian, gay, bisexual and transgender and questioning youth in Washington. Johnson says he generally practiced safe sex, but once, when he was under the influence, he had unprotected sex.

Still, “I was in denial at the time. I thought it might be a false test.”

So he got retested. He remembers the date: September 16. The result was the same.

“The bus ride home was so quiet. Even though there was a whole bunch of noise around me, I blocked everything out.”

At home, he could not tell his mother; her baby brother had died of AIDS complications two years before Johnson was born.

One in a million

At the 20th International AIDS Conference in Melbourne, Australia, this week, young people from over 50 countries gathered to make sure the issues of their generation were heard.

The numbers are quite startling.

Globally, 5 million young people between the ages of 15 and 24 are living with HIV. They represent 41% of all new infections. About 2,500 young people become infected every day, according to Advocates for Youth, an organization that works here and in developing countries.

In the United States, 26% of all new HIV infections are among young people ages 13 to 24, according to the Centers for Disease Control and Prevention. Most new infections are among young gay and bisexual males.

Yet only one in five high school students who has had sex has been tested for HIV, according to a new CDC report (PDF) on sexual risk behaviors. Although the majority of sexually active teens report using condoms, those numbers are decreasing, said Dr. Stephanie Zaza, director of the CDC’s Division of Adolescent and School Health.

“Teens are unaware of their risk of HIV and how to protect themselves,” Zaza said. “As parents and health professionals, and as educators, we need to take responsibility to help them learn about HIV.”

‘We know what works’

A staggering 60% of youths with HIV in the United States don’t know that they are infected, which leads us to an even more troubling statistic: In 2011, about 3,000 young people in this country were diagnosed with AIDS, an increase of 29% since 2008.

“That makes me sick to my stomach,” said Adam Tanner, executive director of Metro TeenAIDS in Washington. “I’m horrified. I think we’re in a moment now where there is more complacency around HIV.”

Metro TeenAIDS is a community health organization working with young people to end HIV/AIDS. It’s where Johnson went to be retested, and after his diagnosis, he began volunteering with the group. Tanner says two-thirds of Metro TeenAIDS’ clients who come in for testing have had unprotected sex in the past year.

Two years ago, a Kaiser Family Foundation survey found that 64% of 15- to 24-year-olds in the United States don’t get tested because they think they’re not at risk. More than 40% said they didn’t get tested because their doctors never suggested it.

“We know what works to end the epidemic,” Tanner said. “We have better medications than we’ve ever had before. We need to arm young people with basic education about how HIV is transmitted. … All the data suggest that by fourth grade, we should be starting those conversations about sex.”

The United States is one of 10 countries that make up 61% of HIV cases, says Cornelius Baker, acting director of the HIV/AIDS division at the nonprofit group FHI 360.

“We have the tools to protect our young people through education, quality health care and family and community support,” Baker said. “If we continue to fail them, our hopes of an AIDS-free generation will be lost.”

Safe sex or no sex

Brennan Stewart, 22, understands the importance of educating young people. He was diagnosed with HIV at age 16. Stewart had just had a routine physical and blood work done. His mother delivered the news.

“My first thought was death. I was going to die,” Stewart recalled. “I felt like, oh, my God, I’m just this dirty person. … I’ve contracted something that’s going to mess up my life.”

He’s not sure how he got it. He says he practiced safe sex but not all the time. He never got sick, never had any symptoms of the disease.

A few months after the diagnosis, he started taking medication. Today, he takes one pill a day and has no side effects. He says his viral load is undetectable.

Metro TeenAIDS has kept him on track, making sure he does what he needs to do to stay healthy. He wants other teens to know what he learned the “extremely” hard way.

“If you think it can’t happen to you, it can,” he said emphatically. “You have to get tested, because if you don’t, you can put your life in danger, as well as somebody else’s life.”

Oh, “and wrap it up,” he said. “Either safe sex or no sex.”

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Patients HIV-free for now after transplant

— Two more HIV patients have no signs of the virus in their blood following bone marrow transplants, according to the Boston researchers who treated them.

However, experts stopped short of calling the two cured and said the treatment is not a viable option for the majority of HIV patients.

The findings were presented Wednesday at the International AIDS Society Conference in Kuala Lumpur, Malaysia.

The two men, whose identities are being withheld, had been on antiretroviral (ARV) drug therapy for years before being diagnosed with lymphoma, a cancer of the lymph nodes.

Both underwent intensive chemotherapy followed by bone marrow transplants to treat the cancer. They remained on antiretroviral therapy.

Approximately four months after the transplant doctors were still able to detect HIV in their blood, but six to nine months later, all traces of the virus were gone.

“Because of those findings, we thought it was justified to take the patients off of their therapy to see what happens,” said Dr. Timothy Henrich, who conducted the clinical trial.

“Now, in a normal person who has HIV, who has been on long-term antiretroviral therapy for years, usually the virus comes back within two to four weeks after stopping therapy, it comes right back. “

Some patients make it up to eight weeks before the virus returns, said Henrich, a researcher at Harvard Medical School and Brigham and Women’s Hospital in Boston, but the virus returns eight to 10 weeks after therapy is stopped in the vast majority of patients.

Not so for these two, however.

“We are now recording 15 weeks after therapy and eight weeks after therapy for our two patients, and to date we are unable to detect HIV rebounding in the bloodstream after we stopped the therapy,” Henrich said.

“We do weekly monitoring, as well. We’ve been looking at the virus in the blood and the cells in the blood essentially every week since we’ve taken them off therapy, and we have not been able to detect virus at this time.”

The two men are being compared to Timothy Ray Brown, also known as the “Berlin Patient.” Brown is thought to be the first person ever “cured” of HIV/AIDS.

In 2007, Brown had a stem cell transplant to treat his leukemia. His doctor searched for a donor with a rare genetic mutation called CCR5 delta32 that makes stem cells naturally resistant to HIV infection.

Today, the virus is still undetectable in Brown’s blood, and he is still considered to be “functionally cured.” A functional cure means the virus is controlled and will not be transmitted to others.

The stem cell transplant procedure, however, is very dangerous because a patient’s immune system has to be wiped out in order to accept the transplant.

Using a bone marrow transplant to treat HIV is not a feasible treatment for most patients, and only 1% of Caucasians — mostly Northern Europeans — and no African-Americans or Asians have the CCR5 delta32 mutation, researchers say.

The transplant is still not a practical strategy for the majority of HIV patients, and the risk of mortality is up to 20%, Henrich says.

Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, agreed.

“This is not a practical approach for someone who does not need a stem cell transplant since the transplant and its preparation and its subsequent need for chronic immunosuppression is a risky procedure,” Fauci said.

“If you have an underlying neoplasm (tumor) like these patients had, then the risk outweighs the benefit,” he said. “However, if you are doing well on ARVs and you merely want to get off antiretroviral therapy, then the risk seems greater than the benefit.”

Even though the two patients showed a reduction of the virus in the blood, it could still be in some tissue — the brain or gastrointestinal tract, for instance, Henrich said.

The virus “could certainly return,” he said.

“It’s possible, again, that the virus could return in a week, it could return in a month — in fact, some mathematical modeling predicts that virus could even return one to two years after we stop antiretroviral therapy, so we really don’t know what the long-term or full effects of stem cell transplantation and viral persistence is.”

Still, he feels the information will help move the curative field of HIV research forward.

“We’re going to learn different strategies about how we can attack the viral reservoir, how we can harness the immune system better and what exactly caused the lack of virus in the two patients at least in the short term.”

Earlier this year, researchers said an HIV-positive baby in Mississippi was given high doses of three antiretroviral drugs within 30 hours of her birth, with doctors hoping that would control the virus.

Two years later, there is no sign of HIV in the child’s blood, making her the first child to be “functionally cured” of HIV.

The Foundation for AIDS Research, or amfAR, helped fund the study.

“These findings clearly provide important new information that might well alter the current thinking about HIV and gene therapy,” said amfAR CEO Kevin Robert Frost.

“While stem cell transplantation is not a viable option for people with HIV on a broad scale because of its costs and complexity, these new cases could lead us to new approaches to treating, and ultimately even eradicating, HIV.”

“Dr. Henrich is charting new territory in HIV eradication research,” said Dr. Rowena Johnston, amfAR vice president and director of research.

“Whatever the outcome, we will have learned more about what it will take to cure HIV. We believe amfAR’s continued investments in HIV cure-based research are beginning to show real results and will ultimately lead us to a cure in our lifetime.”

In the meantime, Henrich says he and other groups are actively enrolling patients for these types of studies.

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