July 7th, 2015

For HIV in the USA, Not in Care Exceeds the Undiagnosed — Solutions Welcome

In last week’s post, I asked about two of the key components of the HIV care cascade — the “undiagnosed” vs the “diagnosed but not in care,” and which group was larger in the USA. Here are your answers as of now:


The people who read this site are a pretty knowledgeable group when it comes to issues related to HIV. This is not a blog about collecting beer steins, philosophical ruminations over baseball cards, or knitting, to cite three mentioned to me by patients over the years.

(That middle one is quite something. As is his book, if you’re into that kind of thing. Which I am.)

But more than half (57%) of even this erudite readership got the question wrong — because in the United States, those diagnosed but not in regular care greatly exceed the undiagnosed. It’s by a factor of more than two-fold to one, at least if you believe the CDC data displayed in this nifty video.

In the undiagnosed, there’s been progress: making HIV testing easier has resulted in a great reduction in those who have HIV but don’t know it. The latest data from CDC have just been published, and we’re down to just 14%. Yes, 14% is still too high — and it’s up to 25% undiagnosed in certain regions (we’re looking at you Louisiana) — but it’s a vast improvement over the 30-40% estimates we were seeing 10 years ago.

And in many regions, it’s now < 10%. Meaning that more than 90% of those with HIV know that they have it, and can get on treatment, prolong their lives, and stop spreading the virus to others.

Now, about that much bigger other group — 30-40% or so of those with HIV in the USA — who know they have HIV and aren’t getting care and treatment.

What’s up with that?

Solutions to this problem eagerly awaited.

[youtube http://www.youtube.com/watch?v=CWf5LBfZVGQ&w=560&h=315]

4 Responses to “For HIV in the USA, Not in Care Exceeds the Undiagnosed — Solutions Welcome”

  1. Anne Neilan says:

    Hi Paul,

    As Jonathan also notes in his comments on last week’s post, it’s striking that the proportion of the undiagnosed remains substantially larger than 14% in high risk areas/subgroups as highlighted in the 2012 CDC Surveillance supplemental report. While overall 14% are estimated to remain undiagnosed, 51.3% of HIV-infected adolescents and young adults (ages 13-24) were estimated to be unaware of their status! And 26% of all new diagnoses are occuring in adolescents and young adults ages 13-24. What’s up with that?

    The table is here on page 48, Table 9a: http://www.cdc.gov/hiv/pdf/surveillance_Report_vol_19_no_3.pdf

    Thanks for the interesting and entertaining post, as always!

  2. Qiang Xia says:

    CDC overestimated the number of persons not engaged in care. Only 49.8% of persons diagnosed before 1990 had >=1 care visit in 2009 (Hall HI, et al. JAIDS 2012; 60(1):77-82. How can that be? Those who are undiagnosed and not engaged in care are probably around the same (or slightly more undiagnosed) (Xia Q, et al. JAIDS 2015; 68(3):351-358.

  3. SK says:

    South Florida does its part – you can go to the beach and get tested for HIV!


    So maybe the solution is to link the positive ones right there while they sunbathe….make them come for follow-up visits on the beach!

  4. Carlos says:

    Indeed it is now all about engagement in care! Until we can figure out how to increase the percent of individuals retained in care the percentage with virologic suppression will remain pitifully low.

HIV Information: Author Paul Sax, M.D.

Paul E. Sax, MD

Contributing Editor

NEJM Journal Watch
Infectious Diseases

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