Only a quarter of Americans infected with the AIDS virus are getting effective treatment, according to a U.S. government report released Friday -- and the youngest patients are the worst off.  The numbers could worsen if states don’t broaden health care as called for under the 2010 health reform law, scientists worry.

It’s the first comprehensive look by the Centers for Disease Control and Prevention at who is getting effective care, and it doesn’t paint a promising picture. The findings raise even more alarm bells as study after study presented at the International AIDS Conference in Washington this week show that treatment can help stop the spread of HIV.

“The majority of people living with HIV in the United States are not on antiretroviral treatment, not in stable care,” Dr. Kenneth Mayer of The Fenway Institute and Harvard Medical School in Boston told a news conference. “They need to be in care first and then able to get treatment.”

The study finds that just over a third of  HIV patients have steady care -- 34 percent  of African-Americans, 37 percent of Latinos and 38 percent of whites.

Younger patients are the least likely to be getting the cocktails of drugs that can keep them healthy and help keep them from infecting others. Just 15 percent of those aged 25-34 had the virus suppressed to desired levels, compared to 36 percent of those aged 55-64. Only 22 percent of young adults were even getting HIV drugs to treat their infection, the CDC found.

There’s no cure for the human immunodeficiency virus that causes AIDS and no vaccine. HIV has killed 25 million since it first started spreading globally in the early 1980s, and more than 33 million people are infected worldwide. About 1.1 million people in the United States have HIV, and the CDC estimates that 20 percent of them don’t even know it.

“We have to continue to raise the alarm,” CDC’s top AIDS official, Dr. Kevin Fenton, said in an interview. “We have to find that sense of outrage.”

The same factors are driving high transmission and poor treatment rates among some U.S. groups: poverty, a lack of access to medical care, and a lack of education about what causes HIV and what people can do about it. Policymakers need to understand that treating people with HIV saves money, Fenton said. 

“What we now know is that treating HIV is cost-effective. For every dollar spent, you save $2,” Fenton said.

Fenton said the U.S. should pull out the stops on providing condoms, counseling, testing and treatment.

“We need to ensure that states have policies that support routine HIV testing,” Fenton said. “Clearly, this is going to be more challenging in some states than in others.”

Top AIDS experts in the U.S. say no matter what people may think about the moral implications of some of the behavior that leads to HIV infection, it will benefit everyone to get people tested, treated and counseled about controlling their infection.

“Every state really must enact the Affordable Care Act,” said Dr. Judith Aberg, president of the HIV Medicine Association and an AIDS expert at New York University. “States need to fund HIV treatment and prevention. We need to continue this fight.”

Governors of several states have said they will not expand Medicaid, required by the health care law, because they cannot afford it. The U.S. Supreme Court ruled last month that states can decide whether to abide by that provision. States refusing expansion now include Texas, Florida, South Carolina and Louisiana. Medicaid, the state-federal health insurance plan for the poor, currently does not cover most low-income adults with HIV. AIDS activists say it’s essential to controlling the epidemic to get coverage for young adults with HIV, and at risk for HIV.

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Chris Vanek paid attention in middle school sex education classes. When he first had sex at the age of 16, both he and his partner used condoms, even though both were virgins. Vanek, now 26, credits an open attitude about sex and frank talk about protection.

Vanek is a living example of one success story being reported at the 19^th International AIDS Conference in Washington -- an improvement in the number of U.S. high school students who are having risky sex.

CDC data presented on Tuesday show just 47 percent of high school students have ever had sex, down from 54 percent in 1991 and holding steady since about 2001. Much progress has been seen among black students: in 1991, 82 percent of black high school students had started having sex but this plummeted to 60 percent by 2011. Just 15 percent of all students have had more four or more sex partners, down from 19 percent in 1991.

And 60 percent of those who are sexually active used a condom, which can protect against pregnancy and sexually transmitted diseases including the human immunodeficiency virus that causes AIDS.

“I knew from a very young age that I was gay. I knew gay men were more at risk from HIV and AIDS than maybe the heterosexual population,” Vanek told NBC News in a telephone interview. “I guess I always just knew that I had to protect myself and the risks of being sexually active.”

Those risks later caught up with Vanek, a road manager and make-up artist for the singer Macy Gray. He learned he was infected with the AIDS virus in 2011 and is now a spokesman for a new Centers for Disease Control and Prevention campaign against HIV stigma. 

“I think I took sex education two or three times,” says Vanek, who grew up in Los Angeles. “It was definitely a topic in school. I even went to a Catholic high school. We would talk about it in religion class. We would talk about it in PE and health. While the schools in California are not the best schools, I definitely think they did a good job of educating me about sex and sexual health and puberty.”

Even Vanek’s conservative blue-collar parents took on the uncomfortable subject, he said. He remembers when he was 13 and learned an older teenaged cousin was pregnant. “They said, ‘Obviously, we would rather you not have sex but we know you are at an age where you are curious. We want you to protect yourself’. And they gave me a package of condoms. It was a really awkward conversation with them.”

The CDC’s Dr. Kevin Fenton says it’s the frank talk about sex that works. “The more comprehensive an education you provide, the better,” Fenton said in an interview. But he noted there is variation across the country, with some school districts choosing abstinence-only education while others offer a full curriculum that includes discussion of lesbian gay and transgender themes as well as how to respect one another in a relationship.

Budget cuts aren’t helping. “Data show that fewer schools provide the comprehensive HIV education needed to ensure that this trajectory continues,” Fenton said. Another barrier: socially conservative movements that reject sex education. Fenton is diplomatic when he is asked about school districts and parents who fear that sex education teaches poor morals.

“Part of what we are committed to doing is to provide evidence,” he said. “We try to make our recommendations on the best available evidence.” Studies show that a comprehensive sex education program can influence sexual behavior more than a limited approach.

It worries Fenton that the numbers of high school students having sex, having unprotected sex, and having multiple partners have leveled off. “The challenge that these data highlight is the need for us to sustain our efforts,” he said.

And CDC and other public health agencies are now looking for better ways to reach young adults after they leave high school. Young, gay men like Vanek are a particular target. Men in his demographic are by far the most likely Americans to become infected with HIV and CDC is acutely aware of the need to keep the momentum going after they leave those middle school sex education classes.

Vanek says he made just one mistake. “I met a guy and we hit it off and we did have sex without a condom,” he said. “We had talked about it. He said he had just been tested, and I had just been tested and we thought we were safe.”

Related links:

The female face of HIV: 'Everyone's at risk'

HIV rates soar in black, gay men

AIDS turns researchers into activists

Shawn Thew / EPA

US Secretary of State Hillary Clinton appeared on a large video screen at the 19th International AIDS Conference this week. Many presentations target women, who make up more than a quarter of new HIV infections in the U.S.

Del’Rosa Winston thought she’d done everything right. She kept herself in steady employment, and waited until she was married to start having children. When her marriage ended, she started having regular HIV tests, just in case. So when she settled into a new, steady relationship, she never dreamed she’d end up infected with the AIDS virus.

“I had a job. I had been in the military. I was educated,"  said Winston, a soft-spoken, well-groomed woman with fashionably cropped red hair. "I just got it from a straight man in a monogamous relationship."

More than a quarter of new infections in the United States every year are in women, and of the 1.1 million Americans with the AIDS virus, 280,000 are women, according to the Centers for Disease Control and Prevention. Black women are especially vulnerable – their infection rate is 15 times the infection rate for white American women.

Winston’s smooth skin and easy smile represent the hidden face of the AIDS epidemic in the United States – the people who don’t look like “typical” HIV patients. The 50-year-old mother of three hopes that speaking out at the 19^th International AIDS Conference, being held in Washington, D.C., will help reduce the stigma and ignorance that fuel the spread of the virus.

 “There are so many people who are getting it because they loved someone,” Winton told NBC News in an interview. Winston couldn’t wait to be in a steady, safe relationship so she could stop using condoms, which she found uncomfortable to use. Her boyfriend, who has since died, told her he had no idea he was infected. But he was, and so was Winston. “We didn’t fit the parameters of what an HIV-positive person looked like,” she said.

She can remember the moment in 1990 when she was told her test came back positive. “The room was gray,” she said. “Like stainless steel. I know there were objects in it but I couldn’t see them. I just flowed like water to the floor.”

Health experts at the conference say they are trying to find new and better ways to reach not only the people at the highest risk – young gay and bisexual men – but others, like Winston, who may not intuitively know how easily and insidiously the virus can move during a moment of passion.  “Everyone’s at risk, whether you have the greatest trust relationship or not,” Winston, who now works as an HIV counselor in Atlanta, said.

Health experts are also trying to figure out some of the factors that make women vulnerable and keep them from protecting themselves even if they do understand the risks. Winston has some ideas – women are often too busy looking after others. “We put everyone else first – kids, school, even the PTA. We get into the mind frame that we don’t have to care for ourselves,” she said.

Another factor may be domestic abuse. A team at the University of California San Francisco published a study on Monday showing that physical and sexual abuse and trauma are major factors affecting which women become infected.

“For a long time we have been looking for clues as to why so many women are becoming infected with HIV and why so many are doing poorly despite the availability of effective treatment,” said Dr. Edward Machtinger, who led the study. “Women who report experiencing trauma often do not have the power or self-confidence to protect themselves from acquiring HIV.”

Their team did a study called a meta-analysis, looking at data from other studies involving 5,900 women. They found 30 percent of women infected with HIV had post-traumatic stress disorder, or PTSD, compared to 5 percent of the general population.  Twice as many women with HIV reported they had been victims of partner violence as women without the virus, they found.

Kat Griffith thinks she knows why. The slender redhead from Peoria, Illinois has been HIV positive for 21 years and she blames a violent boyfriend from high school. “I had a jealous and controlling partner who called me names, demeaned me,” she said. “I had no self-esteem.”

But Griffith went away to college and, she thought, started a fresh new life. “I knew that HIV could affect me and I thought I asked all the right questions,” she said. “But my abuse made me feel I was not worthy of protection." Her college boyfriend infected her.

Women may often put others first but they also lack a good way to protect themselves, Griffith noted.

For years, researchers have been looking for ways to protect women against the virus. There’s been hit-and-miss progress with microbicides – gels or creams that women can use quietly to reduce the chance they’ll become infected during sex. On Tuesday, researchers will announce the start of an advanced, Phase 3 trial of a device called a vaginal ring impregnated with dapivirine, a drug used to treat people with HIV. Researchers will enroll 3,500 women in the two-year study to be conducted in Africa, where half of all HIV patients are women.

Studies have shown that microbicide gels or creams can work - at the last AIDS conference in Vienna in 2010, researchers reported on one that reduced a woman’s risk of infection by 39 percent. But other studies haven’t done so well and experts fear inconsistent use may be one problem.

A flexible, silicone ring may be easier to use and less intrusive than a gel that must be applied before and after sex, the researchers hope. So does Griffith. “After 30 years, we still do not have a completely female controlled prevention technique,” she said.

Outside, protesters were marching through the streets, demanding that everyone who needs them get drugs to treat and prevent infection with the AIDS virus and declaring, “Yes, we can control AIDS.”

Mandel Ngan / AFP - Getty Images

Activists take part in the Keep the Promise Alive 2012 AIDS march and rally on the streets of Washington on July 22,2012.

Inside, scientists were doing the same thing.

The 19^th International AIDS Conference, which opened in Washington on Sunday, is demonstrating like no other forum that, when it comes to AIDS, science and advocacy have the same goals. In the 1980s, it was flamboyant but articulate demonstrators, mostly gay men, who persuaded policymakers to fund research into AIDS. Now, that very research has turned the scientists into advocates.

The thousand or so demonstrators who took to the streets of Washington D.C. on Sunday were a little louder and a little more colorful than the scientists, physicians and policymakers inside the convention center. But their messages were virtually identical inside and outside: People must stop judging patients infected with HIV, governments need to make drugs and testing more widely available, and people who might be infected need help and encouragement to get tested and treated.

In one of the first presentations made on Sunday, even before the conference officially opened, Dr. Melanie Thompson of the International Antiviral Society-USA presented recommendations that everyone get treated for the human immunodeficiency virus that causes AIDS as soon as they know they are infected.

It’s a controversial recommendation. Many doctors fear that people won’t take the drugs properly and their bodies will breed drug-resistant HIV mutants. They also worry about the toxic side-effects of the powerful drugs. But Thompson said the 15 panel members from six countries looked at the evidence and found it showed treating is better.

Then she went a step further. “We need activism, activism on the part of individuals and organizations,” said Thompson, a physician who treats AIDS patients in Atlanta.

Part of the goal of activism is to remove the embarrassment of  being diagnosed with HIV,  she said.

“Stigma keeps people from being diagnosed. It keeps them from being in care,” Thompson said.

Stop judgments about gay men, sex workers, drug users
In the United States and elsewhere, this means stopping judgments about gay and bisexual men, sex workers and drug users, experts stress.

“Men who have sex with men deserve to be treated with respect, and health-care providers need to interact with them in ways that promote disclosure of actionable health information,” Dr. Ken Mayer of Beth Israel Deaconess Medical Center and Harvard Medical School in Boston and colleagues write in a special issue of the Lancet medical journal released to coincide with the conference.

Treating HIV is expensive. The cocktails of drugs that keep HIV patients healthy can cost $12,000 and more a year in the United States. But Thompson points out that some private insurance companies -- which should avoid spending money on unnecessary treatments -- have opted to pay for immediate treatment for anyone diagnosed with HIV.

Government-sponsored insurance plans should do the same, she suggested.

“It is important for us to realize that the idea of not having enough money may be that we don’t prioritize the money that we do have,” she said. “I reject the idea that we don’t have enough money. I think it is a matter of political will.”

Dr. Anthony Fauci, the director of the National Institute of Allergy and Infectious Diseases, has made scientific activism work. He’s been leading AIDS research since the epidemic was identified in the 1980s, working with both Republican and Democratic administrations and convincing even the toughest budget bears in Congress to pay for AIDS research and treatment. He thinks the activist approach works when there’s hard evidence to back it up.

One good example, he said, is PEPFAR, the President’s Emergency Plan for AIDS Relief, which provides treatment to 4 million people globally. “I cannot imagine not reauthorizing an overwhelming success,” Fauci told a news conference.

But Fauci said it was determined advocacy that got it going. “To think that you can come down to Congress or to the administration on a one-shot basis and say, ‘This is important, please fund it’ …I don’t think there has ever been a time when I got what I asked for the first time around,” he said. “It is usually the 50^th time around.”

Fauci praised the first AIDS activists of the 1980s, even if they were sometimes loud and theatrical. “But they were amazingly well-informed. They knew exactly what they were talking about. You can’t dismiss them as being some kind of group that is disruptive,” he said.

The same can happen now, Fauci said, as scientists and doctors push for universal testing and treatment as a way to benefit not only people with HIV, but society as a whole. Delegates to the conference will be highlighting the growing body of studies that show if HIV patients take drug cocktails as directed, they  suppress the virus enough not only to keep it from destroying their own immune systems, but to keep it from infecting others.

But to encourage people to get treated, they first have to be tested and know they are infected. And to ensure that everyone gets tested, Fauci and other medical experts at the meeting will stress, societies need to work harder to reduce the stigma of a diagnosis, work to get hospitals and clinics to test everyone, and then get public and private health insurers to pay for treatment.

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