A small number of people with HIV -- estimates are between 1 in 200 and 1 in 300 -- are able to maintain an undetectable viral load without having to take HIV meds. While these "elite controllers" have been of immense interest to researchers who want to develop successful HIV vaccines, or successful ways for HIV-positive people to get off HIV meds, a new study indicates they might not be managing HIV as well as previously thought.
According to the study, the first to be done on a sizable sample of elite controllers, the health of elite controllers may actually be worse than that of those who are on HIV meds -- and even those who have detectable viral loads. The study found that elite controllers can spend on average twice as many nights in the hospital than people on HIV medications, and about 50% more than people with detectable viral loads who are not on HIV treatment. However, the study found that was not true across the board for all conditions. Elite controllers saw more hospitalizations specifically for cardiovascular disease and psychiatric conditions.
At least one elite controller is not on board with the study's findings. Loreen Willenberg, founder of the Zephyr Foundation, an organization dedicated to advocacy around elite controllers, long-term nonprogressors and viremic controllers, maintains that the study offers more questions than answers.
"I'm really interested in how many of the individuals were obese. How many had diabetes? How many had high levels of LDL?" said Willenberg. Willenberg is herself an elite controller and a long-term nonprogressor (someone who has maintained his or her undetectable viral load for at least seven years). She pointed out that many of the sites used in this study were located in parts of the U.S. with high rates of hypertension.
For the purposes of the study, an elite controller was defined as someone who had three consecutive undetectable viral load test results over a period of a year without taking any HIV meds. One hundred eighty-eight people fit that criteria, though the study eventually focused on 149 individuals, as it excluded individuals with undetectable viral loads who had extremely low CD4 counts -- below 350. The study compared the hospitalization rates of these 149 people with those of 4,709 HIV-positive people on HIV meds.
In terms of cardiovascular disease, the study found that elite controllers were at least three times more likely to be hospitalized for cardiovascular disease than those on meds. However, according to Willenberg, "We need to stay mindful that some of the biomarkers that they're measuring for levels of immune activation and inflammation are those that are closely related to elite controllers' adaptive immune responses."
It's widely known that elite controllers have higher levels of inflammation and hardened arteries, but Willenberg maintains that these processes, in an elite controller, are an integral part of the bodies' response to HIV.
"In long-term nonprogressors and elite controllers, our very robust mechanisms of control -- obviously, we're going to measure higher levels of these processes. So, is that a bad thing?" she said.
Willenberg also stated that, in a sample size so small, one person being hospitalized many times with cardiovascular disease can skew the results. According to Aidsmap, "One particular [elite controller] had 21 admissions for asthma and chronic obstructive pulmonary disease during the study. If this patient was excluded, the rate of admission for pulmonary disease was similar in [elite controllers] to other patients."
For Willenberg, her bottom line is that more elite controllers should be accessing care, not put on meds. "It's true that many elite controllers don't access health care because they're asymptomatic. Obviously, there's a lot of individuals out there that may not even know about their unique status. They may not even know that they're HIV positive."
As head of the Zephyr Foundation, Willenberg speaks to elite controllers who very often express the fears that come with this unique predicament. "I still get correspondence from elite controllers all over the world. Especially as these news feeds come through that we have higher levels of immune activation. That we have inflammation. That our cells are becoming exhausted. That we will have more comorbidities. To the lay person, it is a frightening specter. And, so, I have to caution individuals that they remain in care, that they have conversations with their clinicians, that they take good care of themselves and that they become informed."
She added, "Do I think that all elite controllers need to be put on meds? No I don't. I'm not convinced."
While elite controllers don't need medications, she is adamant about what they do need. "I think there needs to be larger studies."
To read more about this study, read the write-up at Aidsmap.
Mathew Rodriguez is the community editor for TheBody.com and TheBodyPRO.com. You can follow him on Twitter at @mathewrodriguez, like his Facebook page or visit him on his personal website.