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Stigma, Fear Keep Many From Getting Tested For HIV


This is TALK OF THE NATION. I'm Neal Conan in Washington. This past Saturday marked World AIDS Day, a day to remember the millions lost, the millions who live with the disease, to focus on ways to build on the remarkable progress in treatment and on ways to prevent the spread of HIV.

An estimated one in five of those infected with HIV don't know they have it and can unwittingly transmit the virus to their sexual partners. Among young people 13 to 24, that percentage goes up to a shocking 60 percent. Young people accounted for more than a quarter of new HIV infections in the U.S. in 2010, 1,000 preventable infections every month.

And a big part of prevention begins with an AIDS test. If you haven't been tested, why not? And doctors, do you routinely recommend the test? If not, why not? Give us a call, 800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Later in the program, we begin an Opinion Page series on the fiscal cliff and start with Bob Kuttner of the American Prospect. But let's see if we can start with a caller on AIDS testing, and Larry's(ph) on the line with us calling from Boca Raton.

LARRY: Hi, thank you for taking my call. I always feel like I have to apologize ahead of time for starting off with this, but as somebody that does work in the field, testing and education, we have kind of a catch-22, and it puts me in something of a quandary. It is well-established that the HIV antibody tests, particularly the rapid tests, are just not accurate.

The results that they bear are not accurate. They're not consistent. There is no inter-manufacturer consistency with the tests. So for me the biggest quandary that we have is on the one hand, there is a need to identify people who are infected, especially early testing is very important, yet the tests that we use just don't do what we want them to do.

So how do we reconcile the need with the significant shortcomings of the procedures that we use?

CONAN: Well, joining us here in Studio 3A is Justin Goforth, the director of Medical Adherence Unit at the Whitman-Walker Health Clinic in Washington, D.C., a registered nurse with over 20 years experience working in HIV prevention and treatment, and nice to have you with us today.

JUSTIN GOFORTH: Good to be here, thank you.

CONAN: And can you help out Larry with his point?

GOFORTH: I sure can. We do about 11,000 to 12,000 HIV tests, those are rapid tests that you're talking about, a year at Whitman-Walker Health Clinic here in D.C., and we actually don't see hardly any false positives or false negatives. We have really good results on our rapid testing.

Occasionally, you know, once or twice a year you might get a false positive, so that person gets really good news two or three days later when they get their confirmatory back, but out of 11,000 or 12,000 tests that we do a year, that's just extraordinarily statistically small.

So we see really high accuracy on the rapid test. The OraQuick and Clearview, the tests that we use, those companies report high 90s of percentiles of accuracy, and that's what we witness, if not more than that. And all of those tests are then followed up by confirmatory tests. So those tests are confirmed before that person is actually diagnosed with HIV.

So we just really don't witness that problem.

LARRY: Well OK, but the confirmatory tests are not really confirming an infection. I would highly recommend the documentary "House of Numbers." It's a very well-documented...

CONAN: Larry, are you saying that the tests with accuracy in the high 99 percentile, or high 90s percentile, are not worth using?

LARRY: Well no, if they truly had that accuracy rating, they would be very worth using. But it has been also well-established that those are manufacturer claims, and the reality is very different from that. And not 99 percent accurate, they're far from it.

CONAN: I corrected myself, high 90s. In any case, but Larry, thanks very much for the call, and let's bring in Jennifer Kates, vice president and director of HIV Policy at the Kaiser Family Foundation. She's also with us here in the studio. Any dispute on this?

JENNIFER KATES: Yeah, I would just add and pick up what we heard already, I mean, the rapid test has really helped to revolutionize how we deliver and get HIV testing out to communities. And as we've heard about Whitman-Walker's experience, that's been repeated throughout the country.

And I think maybe the caller was talking about the fact that most of the tests we use to determine whether someone is HIV positive tests for the antibodies and not looking at the virus itself. But that's standard procedure in diagnostic testing. And, you know, in general, I think it's - we know it's made a very, very big difference in our ability to reach people where they are, where they need to be reached.

CONAN: And Justin, that's really what we wanted to get to, the people who come in to your clinic, the people you reach out to and bring into your clinic. Why do they tell you, if they haven't been tested before, why not?

GOFORTH: Well so 30 years into this, we're still really battling a very, very strong stigma, stronger in some areas of the community than others, but it's ubiquitous. We still have a really big problem with stigma. So people have fear about what it is to be HIV positive, what it is to - what that means to their life, what that means to HIV, you know, what is HIV treatment throughout a lifespan, and they have great fear about what it means to be HIV positive and how they would have to disclose that to their community, their family, their friends and so on.

So all of - those are all a big string of fears that everybody carries around because we've had a very traumatic history of the last 30 years in HIV, and the real issue is that that's not where we are now, and it's not where the future is, and that message really needs to get out because even if you are - do test positive, you can have a long, healthy lifespan.

You can follow your dreams. You can have a family the old-fashioned natural way. All of those things are true now, and you can get access to health care. The federal government has programs if you don't have health care to get you on meds. So being HIV positive in today's world is not what we mythically think of it as from experience of the last 30 years. That message really needs to get out there.

CONAN: And the other part of it is that of course if you don't get tested, and you are among that 20 percent, that's in the general population, I think you work largely with young people.

GOFORTH: We work with all ages but definitely with a lot of youth because that's who we see coming in the door now testing positive are young, gay, black men, young, gay Latino men and African-American heterosexual women. So those are the really big demographics that we see coming in the door.

And those - all of those demographics live in communities of tremendous stigma, so that's a huge barrier for them knowing their status. And if they don't know, those are the individuals who we know are infecting new diagnoses. New diagnoses are coming from individuals who did not know their status.

So in order for us to stop this thing, we do have to somehow deal with all of that fear so that people have the courage to come in and get tested and know their status and get on treatment because being on treatment, we know now, really well-established that being on treatment prevents new infections.


KATES: Yeah, I would just add to all of that. I mean, the human capacity to distance yourself from risk is really big, and so we do these surveys of the American public periodically, and we did one in July, and we just did one of young people this past week about HIV. And we asked people who did not get tested why, why didn't you get tested.

Almost to a person they say it's because I'm not at risk, and we know from study after study that a significant share of those who are positive didn't know that they were positive. So there's this real ability to, because of the reasons that Justin mentioned, to distance yourself from that risk even if you are engaging in it.

That's one of the reasons there's been a push towards routinizing HIV testing and making it more a regular part of what people experience, not something that they have to seek out actively.

CONAN: And more about that later, but part of the problem, though, is that doctors, when they do see doctors, don't necessarily say, you know, you really ought to get an HIV test.

GOFORTH: That's exactly right, and actually that's the recommendation from the CDC. The CDC says doctors, you should tell your patients just as a routine part of their care they should get an HIV test if they're between the ages of 13 and 64, not because they presented with some risk, not because of anything that you might determine but because it's a good part of health care.

KATES: But most doctors aren't doing that yet. So that's a barrier to be overcome.

CONAN: And I wonder, Justin Goforth, can you tell us about somebody who you convinced to - it's time to get a test?

GOFORTH: Yeah, sure, well, we have many, many examples of that. We have great outreach workers that go out in the community. We have over 100 volunteers that we've trained to do outreach that when we go out in the community. And so we grab people off the street and have conversations with them. We talk to them and meet them where they're at when they start the discussion then.

We give training to our folks that allows us to have meaningful conversations that relates to their life and their demographic. And the way - that way you have a conversation with them that helps them identify that they possibly are at risk more than what they thought and that they can get on that van and get tested and that we will help them get into care and take care of them.

And those are the conversations that need to be had because that individual walking by would probably have never have gotten on that van without those conversations.

CONAN: Well that's a general answer. Tell me about something...

GOFORTH: Right, right, right, so we have recently tested a young heterosexual African-American woman who was 19, and she really didn't feel like she was at risk. I know we were having conversations. She did say that there was one time that she had unprotected sex a few months ago, that he had not had sex with other individuals and so on.

And, you know, we had a conversation with her about do you really know those things, do you really know all the things that you just laid out. She got on that van, and she got tested. She actually tested positive. And she felt like her whole life was just absolutely destroyed in front of her, that she wouldn't get access to health care because she didn't have any, and she - her family and friends would never want to be around her and that she was - would live her life without partnership and intimacy and wouldn't be able to follow a career.

And we very quickly turned all those ideas around and really got her to see that she could have the life that she had set out or any other dreams that she might have in the future, that it's about if she could make a commitment to staying in care an on treatment, then all of the other things are going to be up to her.

CONAN: So education and - difficult enough you would with think with at-risk populations, and that's who you work with here in Washington, D.C. You would think, Jennifer Kates, doctors would be an easier market.

KATES: You might think doctors would be an easier market. I think there are a lot of challenges to reaching doctors, starting from how do doctors find out about what guidelines are. CDC puts out guidelines. It doesn't mean they automatically reach all medical professionals or that the medical professional themselves, even if they see them, feels comfortable doing it.

We know that doctors often, you know, in the privacy of their exam room may not feel comfortable saying to a patient I'm going to test you for HIV along with these other things because what does that mean about, you know, the interaction they might have to have about sexual behavior or other things. So that's a barrier there.

But it's - you know, it's - you add that to the long list of things that doctors also have to do in, you know, the interaction with a patient, and it becomes one thing, well, maybe I won't take that on. So it's definitely something that a lot of institutions and CDC and others are really trying to push on, but it's a big barrier.

CONAN: Well doctors, if you test for HIV, you know about the recommendations, do you test? And if not, why not? Give us a call, 800-989-8255. Email talk@npr.org. Stay with us. We're talking about why many people don't get tested for HIV. And up next, one of the doctors behind a draft recommendation that everyone from their teens to their 60s get tested routinely. And if you haven't been tested, why not? Again, the phone number, 800-989-8255. Email talk@npr.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.


CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. The CDC recommended routine testing for HIV in 2006. Still, many doctors target the patients most at risk, and only about half of adults have ever been tested. Last month, the U.S. Preventive Services Task Force issued a draft recommendation that HIV testing become a routine part of a checkup for all patients 15 to 65 and for pregnant women. We'll talk with one of the doctors from that panel in just a moment.

If you haven't been tested, why not? Doctors, do you routinely recommend the test? If not, why not? 800-989-8255. Email talk@npr.org. You can also join the conversation at our website. That's at npr.org. Click on TALK OF THE NATION.

Our guests: Jennifer Kates, vice president and director of HIV Policy at the Kaiser Family Foundation. She oversees all of the foundation's HIV/AIDS policy efforts. And Justin Goforth, director of Medical Adherence Unit at the Gay Men's Health and Wellness Clinic in the Community Health Division at the Whitman-Walker Health Clinic here in Washington.

Let's see if we can get Tori(ph) on the line. Tori's with us from Framingham in Massachusetts.

TORI: Hi, thanks for taking my call.

CONAN: Sure, go ahead.

TORI: I was just, you know, relaying an anecdote where I recently went to my doctor for my well-woman exams, yearly exam, and I asked to be tested for HIV. And she sort of hesitated and expressed some kind of surprise over it, like somehow that I wasn't at risk. And I'm sort of shocked by that. It seems to me it should be sort of annual, regular testing. I don't think, you know, someone's background or appearance should have any - I don't know, any sort of relevance to that.

CONAN: Once you asked for it, I assume she went ahead.

TORI: Yes, she did, and that was great, but just sort of that doctor-to-patient attitude really sort of impacted me. I think doctors should be more willing to have those conversations.

CONAN: And once - did you ask her why she hesitated?

TORI: No, I just sort of pressed ahead and said that I would like to be tested, and you know, she's my primary care physician, and that's something I feel like she should have brought up with me.

CONAN: Well, thanks very much for the phone call, Tori.

TORI: Thank you.

CONAN: All right. One of the members of the task force that recommends routine testing joins us now, Dr. Douglas Owens, senior investigator at the Veterans Affairs Palo Alto Health Care System, professor of medicine at Stanford University, where he directs the Center for Health Policy and the Center for Primary Care and Outcomes Research. He joins us from a studio on the campus there. And Dr. Owens, nice to have you with us today.

DOUGLAS OWENS: My pleasure, Neal, thanks very much.

CONAN: And why has the U.S. Preventive Service Task Force made this recommendation now?

OWENS: Well, the evidence now is very compelling about the benefit of treatment, in two ways. First there's a benefit to the person you identify as having HIV, as Justin talked about very eloquently. People can live very long and healthy lives if they're on treatment. And there's also a benefit of treatment in that it helps prevent transmission of HIV to your partners.

So the evidence for this is quite compelling, and people can't get on this treatment that can help them if they don't know their status. And as Justin and Jennifer both mentioned, there's stigma associated with testing, and we hope that this recommendation for routine testing will help address that.

CONAN: As you know, many people say routine testing, yes, for people who are at risk, but money for - that might be spent on tests for people who aren't generally part of the at-risk population might be better spent for outreach, for trying to reach those most at risk.

OWENS: The task force looks at the effectiveness of testing, and we ask what works, how good is it, and we evaluated that for HIV testing, and the evidence is really quite compelling. We do also look at the yield of testing, and there's a provision in our recommendation that if you have a very, very low-prevalence population, a population where you don't have much HIV you can consider, it might be appropriate to do risk-based testing.

But we don't think many populations would fit into that. So we think the yield of screening is really likely to be sufficient for most populations.

CONAN: The yield of screening - in other words enough people will test positive to make this worth the expense and the effort.

OWENS: That's right.

CONAN: And it's pointed - it's important to point out, Jen Kates, that if you find somebody who you might not expect with HIV, nevertheless if you start treating them early, this is going to be hugely beneficial not just to them, not just to their family, not just to their sexual partners, but to the American taxpayer.

KATES: Definitely, and I think the main thing that Douglas was just trying to - was mentioning is that the clinical benefit is clear of treatment, but the public health benefit of treatment is really tremendous, and that's sort of been a game-changer. But this idea that the taskforce has now made this recommendation, I want to highlight how important this is, because the task force itself, the U.S. Preventive Task Force, Services Task Force, is an authoritative source that many insurers look to to begin with.

But in addition, the Affordable Care Act put new provisions in the law that encouraged preventive services, and one of the things that they hinged that coverage to was task force ratings, and if a service had an A or a B rating, it would be covered in many instances without co-pays.

This recommendation by the task force, which hopefully will be finalized, would actually set routine HIV screening up to be one of those services.

CONAN: So the 40 or 50 bucks that the test costs would be defrayed.

KATES: Actually, yeah. I mean, it would - what this would mean is that new health insurance plans coming into - after the ACA was passed must provide this service without any co-pays. And Medicaid, if they provide it, the state will get an enhanced benefit, and Medicare, a decision would still have to be made, but it will greatly expand people's access to testing in a routine way.

CONAN: Let's get another caller in. This is Dave, Dave on the line with us from Kansas City.

DAVE: Hi, thanks for taking my call.

CONAN: Sure.

DAVE: I recently, back in August, was sick for about three weeks and couldn't shake it, went into my doctor, you know, try and find out what was going on. They did a whole battery of tests. They suspected possibly mono. And one of the tests they did was HIV. Well, I'm waiting and waiting and waiting for results to come back, and they still don't have anything, and finally the nurse practitioner calls me and says that my HIV test had come back reacted.

Well, I'm just, you know, devastated. You know, I don't - how could this have happened, blah, blah, blah, and come to find out there are actually two different types of tests. The first one they screen you for is the presence of antibodies, and I heard somebody else talking earlier about, you know, the claims of reliability with regard to the test are all based on manufacturers' claims.

And the antibody test, from what I ended up reading, you get a diagnosis like that, you start doing your own research, right? So the antibody test is very, is very sensitive but not very specific. So there are other things, in my case mono, apparently, that you can be sick with that will trigger a reactive response from the antibody test.

CONAN: And did you have a follow-up test?

DAVE: I did have a follow-up test. The confirmatory test that they're talking about, usually a Western blot, is the one where they actually look for proteins that are associated with the virus itself and if they can detect those in your blood. And that was always negative. But at the same time, you know, you test once, and then they tell you to come back in in four weeks and test again.

CONAN: That was a tough four weeks, yeah.

DAVE: Yeah, yeah, it's a living hell for four weeks. And then, you know, that - I do take that test, the results are the same, come back again in three months. Three months, are you kidding me? I've got to live with this, wondering what my, you know, what my status is for all this time? In the meantime, you know, three months later the test comes back the exact same way because apparently it takes as much as three or four months for whatever antibodies were cross-reacting with the test to cause it to come back positive.

CONAN: And I'm taking it you're leading us up to the fact that eventually you tested clear?

DAVE: Yeah, I did. Well, I never actually did test clear. There's what they call a window period, in the event that you actually do have HIV, where you can test positive for the antibody, but the confirmatory tests, the proteins won't be detected, all right, and that window period takes anywhere from, anywhere from six to 12 weeks before it expires, and then a confirmatory test should be able to detect the proteins at that time and confirm an actual HIV diagnosis.

CONAN: Well, after all that, will you continue to go back and get tested regularly?

DAVE: I would still get tested, but I don't know necessarily how much faith I have in the results, because even after all this time, my antibody, the last antibody test I had was still reactive. The confirmatory test was negative. And from what the infectious disease doctors, specialists, told me, was that if you haven't rolled over for the confirmatory test to actually detect HIV by now, then you're not going to.

CONAN: All right, Dave, we wish you continued good luck, and sorry for the experience.

DAVE: Yeah, thank you very much.

CONAN: Here's an email with somebody else who had an experience with a false positive: A close friend of mine had a horrible experience when she tested positive falsely, and her result was shared on a fairly public platform without her consent. I was furious the testing facility would disregard her confidentiality and refuse to be tested unless I feel confident of my privacy.

And Justin Goforth, that's something that I think a lot of people would be concerned about.

GOFORTH: Right. I really just want to stress that I really feel for the anguish that these individuals have been through, but that this is not the experience of the vast majority of people that come in for testing, that the testing is extraordinarily accurate. The specificity and sensitivity issue that the gentleman referred to is important because in - when you're screening for public - in public health world for things like HIV, you want to make sure that if somebody is negative - if somebody is actually positive, that they don't walk out thinking that they're negative because that would be disastrous because they're going to go on to infect other individuals.

CONAN: So if you err, you err in the other direction?

GOFORTH: Exactly. Because then you get, like, a scenario where like this gentleman that you are going to get good news down the road, and that's how the test is designed. It happens extraordinarily rarely. I want to really emphasize that. And that when individuals go through these kind of scenarios, I get it that it's really difficult, but that this is not the experience that people have.

CONAN: Here's an email from Elizabeth: I'm listening to your program on HIV testing. Is it guaranteed insurance coverage won't be denied if I test positive for HIV if I go to a local clinic instead of Kaiser? Will those results remain confidential? Am I put on a list somewhere if I test positive? Jen Kates?

KATES: Well, actually, I can answer that with some good news, because of the Affordable Care Act as of 2014, adults cannot be denied insurance coverage for any reason health related or otherwise. That has been a real barrier for people with HIV in the past. While that law has not kicked in yet, there's actually a temporary provision in place so that adults that fall into that situation, if they were to, would have a place to get care. Kids already are protected under the ACA for this thing. So it's a very important step that anyone with a pre-existing condition cannot be denied health insurance.

CONAN: And what about this privacy issue? You hear that again and again.

KATES: Yeah. I was, you know, I also want to echo these situations we've heard about are very - not great situations, and they are not the common scenario. And the privacy of your information, your medical information is paramount and very, very important and very well protected. So the caller that - the email that said that that's a very unusual situation and should not be occurring. What happened in that case sounds very - something like that probably violated some - I don't know all the circumstances, but that's not a normal situation. Your information is confidential.

CONAN: That is Jennifer Kates, the vice president and director of HIV policy at the Kaiser Family Foundation. You just heard a minute ago from Justin Goforth, director of the Medical Adherence Unit, the Gay Men's Health and Wellness Clinic and the Community Health Division of the Whitman Walker Health Clinic here in Washington, D.C. Also with us, Dr. Douglas Owens, member of the U.S. Preventative Services Task Force and senior investigator at the VA Palo Alto Health Care Services.

And you're listening to TALK OF THE NATION from NPR News. And let's see, we go next to Denise, and Denise on the line with us from Holland, Michigan.

DENISE: Yes. Thank you for taking my call. I was divorced several years ago and approached my father who is a physician and asked him to do an HIV test on me, and I was rather surprised when he cautioned me. And I, you know, I - he said you go into this assuming it's going to be negative. You know, like your German shepherd dog, you're going to have your hip certified. You're going get your certification. It's negative. And life is going to be good. He goes what if that's not the case? Are you sure you want to do this? And if it isn't negative, where is that going to take your life? And as my father, he cautioned me not to go through with the test.

CONAN: Was this before treatment became so much better?

DENISE: Yes, it was.

CONAN: But cautioned you not to go ahead with it even if a positive might have drastic results?

DENISE: That's correct.

CONAN: I wonder if you've had a chance to speak with that physician more recently?

DENISE: We haven't spoken on that topic because I did go ahead with the test. It was negative, and I got married not long after that, and we're not in a risk group, you know, at all. So it wasn't a factor in my life anymore, and I'm not sure if he would say differently, but there was so much negative energy surrounding the disease and the tests and just people who would think they might be positive, which is why I went to my father rather than my own physician.

CONAN: I understand. I understand. Thanks very much for the call, Denise.

DENISE: Thank you.

CONAN: And, Dr. Owens, that brings us back to you and the importance of this recommendation that the test now become a routine part that this - you think that's going to help eliminate the stigma among doctors, as well as their patients?

OWENS: We certainly hope so, and we think it's a much easier conversation to have with the patient to say we recommend this for everyone, and it's a situation where you're not singling someone out because of the behavior or a group that they belong to. I'd also just like to comment that, along with Justin and Jennifer, that the - I certainly feel terribly about the experiences of some of your callers have. The task force reviews the accuracy of these tests. They are in general very accurate.

The rapid tests do need to be confirmed with the more regular standard testing, but it's extremely rare to have the kind of experiences that your callers have had, and I'm very sorry that they did. So we do think that making this routine will help give physicians more impetus to offer it, and we hope that patients will accept testing.

CONAN: And though this is being presented as something voluntary, there's an opt-out?

OWENS: Absolutely, it's voluntary. We want people to be informed about the possibility of getting the test, and we want people to have the, of course, the option to say yes or no.

CONAN: And, Justin Goforth, let me go back to you before we wind up, and that is there are a lot of people who don't go see their doctor every year.

GOFORTH: That's correct, so - and in fact, if you really look at who our high-risk demographics are, so young African-American or Latino gay men or young African-American heterosexual women living especially in areas of poverty or marginalized areas, those individuals probably are actually not engaged in primary medical care. So that's a big cultural shift that we have to make. We have to make the case to the community at large that preventive health care is a good thing to be involved in, and that you need to have a doctor, and you need to be having physicals, and you need to be having routine testing that includes HIV testing.

So we do have a big cultural shift to move people into what is living healthy and well and using preventive methods rather than seeking care only when you're sick.

CONAN: And we'll go out with this email from Bonnie in Kansas: I would like to mention the judgmental type of doctor who may grudgingly agree to test for HIV but not without belittling the behavior of the patient. It's been almost 30 years since this happened to me, but I truly don't believe its occurrence has disappeared. The reason I went to be tested because my first husband had been quite unfaithful to me until I found about it, and we divorced. Before I remarried five years later, I went to my doctor to be tested, because I've heard that if my ex-husband was infected with the virus, I could be also infected without the symptoms appearing until years later.

I wanted to be sure I was not going to marry and infect my new husband. My family doctor at the time even after hearing my reasoning began talking down to me about the immoral and promiscuous behavior that causes HIV and AIDS. He didn't say he would not test me, but I felt that would be an admission on my part of being a worthless and immoral person. I left without the test. Happily, my faithful husband of many years and I are both happy and healthful. We have good doctors now. So that's now part of a routine recommendation. Thank you all very much for your time. It's the TALK OF THE NATION from NPR News. Transcript provided by NPR, Copyright NPR.

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