An ongoing dialogue on HIV/AIDS, infectious diseases,
July 1st, 2015
Undiagnosed or Not in Care? For HIV, Which Is the Bigger Problem?
These days, it’s hard to have a “closed book” examination.
The information is everywhere — on your computer, your phone, your tablet — whatever screen happens to be glowing in front of you.
“In the age of the internet, why be wrong?” is something my son used to say as we sat at the dinner table, grappling to remember who was the mother of Perseus, the flight time between Boston and Ft. Lauderdale, or the new name for Haemophilus aphrophilus.
(Still can’t get over that one. And yes, ID doctors have fascinating dinner table conversations.)
So it’s tough to ask you to try and take this quiz without heading over to the CDC and finding the answer. But give it a go because 1) I have a theory, triggered by a patient with advanced HIV disease I just saw in the hospital — which somehow always feels like a failure of our healthcare system — and 2) if you get it wrong, who cares? Nobody will know.
The question is about how we can possibly still have untreated people with HIV in this country, even though the medications are widely available, highly safe and effective, and simple to take. Plus, there are numerous programs in place to ensure that pretty much everyone who needs it can get coverage for treatment.
Is it that they are undiagnosed and hence don’t know that they should be on treatment? Or do they know that they have HIV, but for some reason aren’t engaged in regular care?
5 Responses to “Undiagnosed or Not in Care? For HIV, Which Is the Bigger Problem?”
Paul E. Sax, MD
Contributing Editor
NEJM Journal Watch
Infectious Diseases
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Interesting issue! I think this two outcome variables are manipulated by different predictor variables, although something in share, so they could change independently:
“Undiagnosed” variable is mostly affected by “lack of enough knowledge” about HIV/AIDS in people (specially high risk groups) and ” accessibility of diagnostic tools and facilities”, however, “Not in care” variable could be affected mostly by “Health Management Policies” and “Treatment accessibility”.
Both variables are expected to be high in developing countries and low in developed countries, although around the same numbers, indicating not the same situation, I think.
Note that the data that tell us this are incomplete – our data systems don’t see whether people are receiving care effectively (local data suggest that the proportion of people receiving care is underestimated). These data collection systems will improve as more providers move to electronic reporting.
In developing countries a large proportional of people dont know their HIV status even those who visit health facilities for one or other reason, those who are HIV+ enrolled to care face a # of challenges including lack of well equiped facilities and staff, facilities not easily accessible and cultural traditions.
However estimates show that the unreached population is bigger than those in care
Thank for sharing this information.
Thanks for posting about this Dr. Sax! This is such an important issue.
Undiagnosed cases certainly remain a problem. Evidence points to poor engagement and even more so, poor retention in care as the larger issue! Skarbinski et al JAMA Int Med 2015 estimate that ~ 208,000 PLWH are unaware of their infection compared to 519,000 diagnosed but not retained in care! This paper estimates that 2/3 of new infections are attributed to the population who are diagnosed but not retained! Clearly poor engagement and retention in care has surpassed undiagnosed HIV cases as the larger issue in the HIV epidemic in the US!
This is not to say that undiagnosed cases are not still a concern – Hall et al published in MMWR June 26, 2015 / 64(24);657-662 that about 14% of PLWH in US may be undiagnosed. However the states in the South seemed to have a disproportionately high proportion of undiagnosed with only FL (12%) and NC (13%) having less than 14%. LA (23%) and my home state of GA (19%) unfortunately lead the pack in estimated % of undiagnosed PLWH.