Monique Moree is the new face of the AIDS epidemic in the U.S. The 31-year-old stay-at-home mom, who is black, was pregnant with her third child in 2005 when she found out she had HIV, the virus that causes AIDS.
“I was shocked,” Moree, of Summerville, South Carolina, said by telephone. “Being a wife, I didn’t think I could be HIV positive. I hated myself and God. I wanted to kill myself.”
Now Moree takes three pills a day to fight the illness and, so far, has been free of its most damaging effects. While she’s thrived, others she knows haven’t been so fortunate, she said. She blames the government for not doing enough for minority communities increasingly at the center of the U.S. epidemic.
“African Americans have been hit so hard,” she said.
While black men and women are 14 percent of the population, they accounted for 44 percent of 48,000 new HIV cases in 2009, the latest year available for definitive data, according to the Atlanta-based Centers for Disease Control and Prevention. The infection rate in black men was more than six times that in white males, and black women were 15 times more likely to become infected than their white counterparts, the CDC data shows.
New data examining how fast the virus is spreading among black men in hard-hit areas will be presented this week at the first International AIDS Conference to be held on U.S. soil in 22 years. How to target interventions to slow the spread of HIV in these affected communities will be a focus of the meeting, which started yesterday in Washington.
In one government-funded study presented at the conference today, researchers from the HIV Prevention Trials Network found that the rate of new infection in black gay and bisexual men was 2.8 percent a year, 50 percent higher than in white men who reported having sex with a male. For black gay and bisexual men who are 30 years of age or younger, the rate was 5.9 percent a year, according to the study of 1,553 men in six U.S. cities.
“To say we’re not where we want to be is an understatement,” said Charles Flexner, an infectious disease specialist and clinical pharmacologist at Johns Hopkins University in Baltimore who has studied infection rates among black women. “We haven’t achieved the goals we want to.”
In March, Flexner and colleagues reported on a study that found infection rates were five times higher than government estimates for 2,099 black women in six U.S. cities. The data was similar to that reported in parts of Africa where the disease is considered the most virulent, he said.
A combination of poverty, stigma and lack of access to health care services help propel the epidemic among blacks and other minorities, said Carlos del Rio, chairman of global health at Emory University in Atlanta.
“We have the worst epidemic of any developed country and part of the reason is that some regions of this country are not a developed country anymore,” del Rio said in a telephone interview. “The epidemic has changed dramatically and that is something that is not totally appreciated.”
At Grady Memorial Hospital in Atlanta, doctors are seeing more young black men in their twenties come in with late stage AIDS, said Jeffrey Lennox, chief of infectious disease at Grady Memorial.
“I would estimate it has probably gone up by at least 50 percent compared to five years ago,” and many of the patients he sees are being diagnosed late in the disease, after symptoms have begun to weaken them, Lennox said by telephone.
“The people that are transmitting the virus either don’t know that they are infected, or don’t know they should be on treatment, or haven’t accepted treatment,” he said.
One young black man he worked with didn’t report for treatment until he had a CD4 count of less than 10 cells per cubic milliliter, compared to a normal level of above 500. These are a type of immune system cells affected by the AIDS virus.
The man by that point had suffered permanent nerve damage, Lennox said. While the virus is now under control thanks to a cocktail of powerful drugs, the man will live the rest of his life in a wheelchair, he said.
At least eight patients have reported to the hospital in the past year in a similarly late stage of disease, Lennox said.
Researchers aren’t sure why black men with male partners had such higher rates of infection since black men weren’t more likely to engage in unprotected or risky sex than white men, according to a CDC study presented at the meeting. One explanation may be that black men tended to have higher levels of the virus, making them more infectious to other partners, Linda Beer, a CDC researcher, said in a presentation today.
Beer said HIV infected black men were less likely to get adequate treatment, which can lower their viral load and decrease their ability to transmit the virus.
“Our prevention efforts have been stalled, that is without a doubt,” said Phill Wilson, president of the Black AIDS Institute based in Los Angeles, in a telephone interview. In black gay American men, the HIV problem “rivals the epidemic you find in South Africa, Zimbabwe or Nigeria.”
Wilson said he is optimistic that better targeting of federal money and an increased emphasis on using drugs early after infection to prevent spread can turn things around.
“We are at a deciding moment right now,” he said.
Health and Human Services Secretary Kathleen Sebelius said yesterday that the Obama administration has changed its formula for distributing funds for HIV prevention to get more money to the most-affected communities. She also announced partnerships to help people with HIV get on treatment, including a three-year effort with Walgreen Co. to test how pharmacies can help patients adhere to their drug regimens.
“Too many people are slipping through the cracks,” Sebelius said in a speech at the opening session of the conference, according to her prepared remarks.
With powerful new drugs keeping people alive for decades, AIDS has gone from being a death sentence to a chronic disease. The challenge now is finding people at high risk in poorer communities before they get infected, said Kathie Hiers, chief executive officer of AIDS Alabama, a nonprofit group that assists patients with housing, testing and other services.
People in poor communities need to be better counseled on prevention, and given ready access to testing so they can be treated quickly if they are infected, a strategy that research has shown can prevent them from getting complications from HIV and help stop them from spreading the virus to others.
“It boils down to vulnerable populations,” Hiers said by telephone. “We are talking about people with less money, with less influence and with less access to health care. All of those structural issues are worse in the black community.”
The entire South “is in crisis,” she said.
Just getting someone to a clinic there can be a huge problem, she said. “When people are making $10,000 a year, they don’t have a car,” she said.
Bill Arnold, CEO of the Washington-based Community Access National Network, said testing programs are key.
“Thirty years into the epidemic, some groups aren’t being reached to know they need to be tested, he said by telephone. “There are stigma issues in some communities, and the younger generation thinks they will live forever.”
One question researchers are just beginning to examine is how broadly to roll out Truvada, the AIDS drug from Foster City, California-based Gilead Sciences Inc. that was approved last week as the first pill to prevent the disease.
One study set to be reported in the next few months will examine the practicality of giving Truvada to healthy black gay men in three major cities, said Darrell Wheeler, an AIDS researcher at Loyola University Chicago.
“We are going to be looking at whether they are willing to take it, do they adhere to it if they decide to take it, and are there any side effects,” he said by telephone.
If a large scale rollout looks feasible, the next thorny question becomes who will pay for it, he said.
Wafaa El-Sadr a professor at Columbia University in New York, said the U.S. has traditionally failed to target the unique cultural and social factors that tend to propagate the disease within disadvantaged communities. These include isolated social networks, distrust for authority and lack of access to consistent health care, she said.
AIDS prevention messages tend to stress a broad need to avoid high-risk behaviors, such as unprotected sex with lots of partners. In minority communities, men don’t have unprotected sex more often than in other groups, El-Sadr said. Instead, they’re more likely to have sex with someone who may be infected and doesn’t know it, she said.
Jonathan Mermin, director of the division of HIV/AIDS prevention at the CDC, said the agency uses “surveillance data and epidemiology to target interventions where they’re needed the most.”
Federal funding for HIV treatment and prevention efforts in the U.S. has risen to $22.3 billion in President Barack Obama’s proposed fiscal 2013 budget, from $20.6 billion in 2011. The CDC spends about $700 million on HIV prevention efforts, Mermin said.
Funding has been targeted on a range of at-risk populations, he said. For instance, he said an expanded testing program that began in 2007 focusing on black Americans diagnosed 18,400 people with HIV infections in its first three years.
The CDC starting in September plans to begin providing $44 million over three years to improve the continuum of care in states with high numbers of blacks and Latinos living with HIV, Mermin said. The aim is to help make sure people get tested, get on treatment, and then stay on it.
Among other things, it will involve “peer navigators” to help people get the testing and treatment they need, he said.
“We are aware of the disproportionate impact that HIV is having on African Americans, as well as Latinos, and we are increasingly focusing efforts to decrease those disparities,” Mermin said in a telephone interview.
Also starting Sept. 1, people with HIV who can’t afford their medicines will be able to use a single form to apply for assistance from eight companies that make HIV drugs, including Merck & Co. and Gilead, Sebelius said.
While the number of new infections has been stable for a decade, this is partly because of the success of drug cocktails in keeping people with HIV alive, Mermin said. More than 1.1 million Americans are living with the virus, according to the latest CDC data. That means there are more people who in theory can spread the virus than ever before, he said.