September 12, 2009
Table of Contents
Bernard Branson, M.D.
One million people are estimated to be living with HIV in the United States. However, around 200,000 people have no idea they are infected. The majority of Americans have never been tested for HIV. So if they are HIV positive, they are not only missing out on lifesaving treatment, they are also unknowingly putting their sexual partners at risk.
To solve this problem, three years ago this month, the U.S. Centers for Disease Control and Prevention (CDC) issued revised HIV testing recommendations to increase HIV testing in health care settings.1 Part of the changes to the guidelines included removing the requirement to get written consent for HIV testing and also no longer requiring HIV prevention counseling. Although some HIV groups remain against the removal of these requirements, the vast majority of people in the HIV community have backed the new recommendations. The lead author for the CDC's revised HIV testing recommendations is Dr. Bernard Branson who has been the chief architect for CDC's activities surrounding new technologies for HIV testing. Dr. Branson has been involved in HIV counseling and testing for more than 20 years. Back in 1983, he founded the HIV/AIDS organization HERO, Inc. in Baltimore, Md. He also initiated both Maryland's program for anonymous HIV counseling and testing and its state AIDS hotline.
I had the chance to sit down with Dr. Branson recently to get a sense of how the expansion of HIV testing is going in the United States and what are some of the new HIV testing technologies.
Welcome Dr. Branson! The CDC's recommendations were published on Sept. 22, 2006. Where are we now?
I think that we are in several places. First of all, I think the recommendations have taken hold somewhat in certain environments. Part of that is because there has been expanded funding for testing.
One of the main concerns that people have raised about attempting to do this is: Who's going to pay for it? The willingness in many places to undertake HIV screening has been a positive factor, but the idea that there's a lack of reimbursement has been a problem.
In June of this year, the Centers for Medicare and Medicaid Services sent an advisory to all the state Medicaid directors indicating that, in fact, HIV screening is reimbursable. And just earlier this week, on the ninth of September, the Centers for Medicare and Medicaid Services did an advisory about a national coverage determination for Medicare to pay for screening. Medicare can only pay for preventive services if it is specifically authorized under certain statutory requirements. It has just published its decision memo for 30-day comment indicating that Medicare would also pay for screening. I think those are very positive steps in terms of the practical things it takes to implement the recommendations.
This is for people who don't have private health insurance?
If somebody walks into an emergency room and doesn't have private insurance -- is just on Medicaid or Medicare -- they currently can't get their test covered.
Medicaid is a state-by-state decision. Obviously, the economic implosion has interfered with a lot of state budgets. So in terms of what their priorities are, they may or may not cover it, depending on the state.
So far, California is the only state to enact legislation that requires all health insurers to pay for HIV screening. Similar legislation was introduced but hasn't been passed yet in Washington, D.C., and in Texas.
It's one of the major problems with the implementation of the CDC's guidelines for HIV testing.
What are some of the other problems?
I think that the other problems are part provider-sided and part patient-sided. At this conference, there was a poster showing that a lot of patients still seem to think that you need to be "eligible" for an HIV test -- that you have to have some risk factor.2 Even though they're infected, they refuse or decline the test because they think that they're not at risk for HIV infection.
I think that over the last 25 years, we've created a culture that says you have to basically do something socially undesirable in order to get HIV infection. People don't really want to acknowledge that -- or they don't perceive that -- they have any reason to have encountered HIV. Therefore, they still don't accept an HIV test, even when it's more routine.
I saw that study. I thought, perhaps, it's also that some people think they're at great risk, but when offered a test without warning -- a test that'll change their life forever -- they're just not ready for that kind of information at that moment. They came for something else entirely: an injury, for instance. They may have thought about getting tested, but it's still such a dramatic thing to test positive for HIV. Many people who suspect they are positive have been harboring fears about being positive for years and have repeatedly put off the testing.
There is that, which I think influences a proportion of people. But to be honest with you, I think that is much more in the provider's mind than it is in patients' minds.
If you look at -- this was three years ago -- the Kaiser survey about HIV testing, two thirds of people said they didn't think they needed to do anything special to consent for an HIV test.3 Providers still harbor this feeling that HIV is very different, very life changing. Especially in emergency department situations: a car accident, a heart attack. It's like finding out that you have cancer when you went in because you had a cough, and you didn't think it was going to be any big deal.
I don't think HIV is that different from those other circumstances. Dr. Holson [David Holson, M.D., M.P.H., of the Queens Hospital Center] has one of the best responses with respect to this issue. He says, "Everybody who comes in with a laceration, we give them a tetanus shot. In Queens, what do you think are your chances of getting tetanus compared to your chances of getting HIV?"
We do certain preventive things in those circumstances that people just accept as a matter of course. In those environments, perhaps finding out you have HIV would be much more significant, or not finding out that you have HIV would be much more significant.
What I was getting at was the drama associated with HIV, both in the minds of practitioners and the minds of patients. If you go where people don't know very much about HIV, they still think it's a disease that will kill you immediately.
That, I think, is the most important misimpression that we need to correct. People have done life expectancy studies, and they have looked at the relative benefits of several different medical interventions that we do. What you can accomplish with effective antiretroviral therapy is quite remarkable compared to even the comprehensive care after a myocardial infarction, after a heart attack. Antiretroviral therapy has so much more significant per-person survival benefit. So that is the message I think people need to understand, that HIV is not like it used to be.
How do we make people understand that?
I think it's going to take a period of time. I think it's going to take more general awareness of not only how effective treatment is, but how simplified it's become. For a period of time, when people had to take multiple medications every four hours or every six hours, and eat with some meds and not eat with others, it was complicated. Now, with combination medications, in many circumstances you're talking about taking one pill a day that has long-term benefit. In many cases now, people are talking about starting treatment earlier.
The other concept that is gaining traction is what's called "test and treat," where you would potentially start people on HIV treatment as soon as you find out that they're infected, in order to help reduce their chances of spreading it to other people.
So, we've got two things that are going on. One is the personal benefit to an individual from a longer life expectancy. The second is the benefit to the people they care about by reducing the chances that they might pass the infection on.
Let's discuss some of the technologies that are already being used now in HIV testing. For instance, a lot of people still may not know that they can get orally tested for HIV.
Yes. There has been an oral test to collect the specimen for conventional testing since the mid-1990s. And of the rapid HIV tests, there have now been six approved since 2002. The first of them to be approved, the OraQuick test, can work either on a finger-stick blood specimen or on an oral fluid specimen that you get just by swabbing the gums. It still needs to be confirmed [e.g., with a Western blot test], but the oral fluid test has made it a lot easier for people to do testing in settings where it's not feasible to collect blood specimens. That, I think, has made a large difference in the acceptability of testing.
And people can get results within 20 minutes.
The definition is that in less than half an hour you can get results. Some are as few as 10 minutes, some 20 minutes. But yes, all of them are nearly immediate.
I've heard that some of them have reliability issues.
There are two sides to that. One is the problem of a false-positive test, which had been the major concern in HIV testing since 1989, when recommendations first came out. Originally, rapid tests weren't available in the United States because you could not give a person a result unless it was doubly confirmed afterwards. We don't do that in any other circumstance: If you get a Pap smear and it is positive, that's just a screening test -- it may turn out to be negative.
If you look at the same issues with false positives in mammograms, we're not afraid of getting mammograms simply because they may not be correct. That's the nature of screening tests. You want them to pick up everybody who's infected, even though the tests might be wrong sometimes. We've applied a very different standard to HIV testing. They have to be perfect compared to other things.
The other concern that had been raised with respect to the oral fluid test was that there had been these episodes where there were little clusters of excess numbers of false positives. The company making that test reformulated it earlier this year, and though there haven't been any subsequent reports of an excess number of false positives, that's not to say they'll never occur. But it is really a very, very low proportion -- much lower than with any other diagnostic test.
I heard that one of the issues was the expiration date on the test -- that a lot of clinics never got around to using all of them before they had expired, and then ended up using the expired tests.
Certainly, if you use anything that's expired, it's not going to work as well as something that's in date. I wouldn't eat expired food either. So obviously the consequences are unpredictable in that circumstance.
Can you review some of the new technologies in HIV testing?
One technology that has been employed in a number of places around the country is using a test for RNA. Most of the tests up until now had been tests for antibodies, which look for the body's reaction to the virus. Depending on the test that you use, it may take anywhere between two weeks and six weeks for a person to develop enough antibodies to the virus to be detected.
You mean after exposure?
Yes, after a person's been exposed to HIV. The RNA test, which tests for the actual viral RNA itself, will detect infection starting at 10 days after a person has been exposed to HIV.
Nothing is perfect. There's no morning-after test that you can take. But the RNA test will pick up infection earlier than the antibody test. In some groups of people, it's important to pick up infection early -- men who have sex with men [MSM] in particular, because infection is spreading so quickly among them.
In the CDC's National HIV Behavioral Surveillance System, 92% of men who have sex with men said that they had been tested for HIV before and three quarters say they've been tested in the past year. Yet when they tested people who were HIV infected -- they tested people during the surveillance -- half of the people who were infected didn't know it. So, despite testing and despite relatively recent testing, people end up being infected and not being aware of it.
When they did these tests for RNA in people who come in for antibody testing, anywhere between 10% and 20% of the people who were infected with HIV weren't positive for antibodies yet. Picking them up with these earlier tests, these RNA tests, ended up not giving a person a false sense of reassurance that they were uninfected.
The problem with the RNA tests is that they're expensive. To make it less expensive, what people have tended to do, is what's called pooling, in which you combine anywhere between 10 and 100 specimens together in order to test them at one time, which saves money.
Outside the U.S., for several years tests have been available that will look for both HIV antigen and HIV antibody at the same time. Several companies have indicated their intention to introduce those in the United States -- both the conventional test, where you send it off to the laboratory, plus one that's a rapid test: It looks like they'll report an infection within four days of the time that the RNA test picks up infection. That will very likely help to identify people earlier in this stage of infection and miss fewer people who have been infected but haven't yet developed the antibodies. This is the "window period."
We have talked about the window period for a long time. Each test has a different length of the window period. The idea is to make it as short as possible. As I mentioned, there's no way to close the window period. For about the first 10 days after exposure, there's no test that will determine that a person has been infected. But certainly, shortening it as much as possible is important.
On the other hand, for people who have been recently exposed to HIV, if they should have a test that's negative, it still is important that they get retested in between two and four weeks in order to make sure, if they've had a risky exposure, that they haven't acquired HIV.
When will these new tests be rolled out?
I think that really depends on the manufacturers. They have to do the clinical trials and take that information to the FDA [U.S. Food and Drug Administration]. I would love to be able to look into a crystal ball and say what's going to happen for sure. I think we're optimistic that we'll see them during 2010. But that depends entirely on the nature of the manufacturers and when they complete their clinical trials and get FDA approval.
Whatever happened with the home test -- the idea that you could test yourself for HIV without going to a testing facility?
There is a home collection system, where you obtain the specimen and you send it off to a laboratory. The idea of doing home tests is still a consideration. I think that several companies had approached the FDA about seeking approval for home tests, and at the meeting of the FDA's blood products advisory committee, the committee was positive. It saw that there would be a potential role for that.
However, what we need to do is make sure that people can do it right at home -- and if they get an answer, they understand what the answer means at home. I think that's the phase that we're at right now, where the companies are conducting clinical trials to see to it that somebody can just read the directions, do the test and get the right answer.
Women across the country are taking pregnancy tests, and they're reading it pretty correctly and figuring out what to do with the results.
The situation with the pregnancy test is: You see this all the time in the movies, where a woman goes out and buys six pregnancy tests and keeps doing it until she feels comfortable about what the right answer is. The significance of an HIV test result, negative or positive, and the correct answer from an HIV test result is, I think, in a different dimension than a pregnancy test.
When you look at some of the early data when pregnancy tests were first introduced, probably people got the right answer only about 60% of the time. Now that they're more common and people are more acquainted with it, I think there is a higher degree of accuracy.
And a pregnancy test, in general, is done on urine. It's pretty easy. With HIV, you have to obtain a specimen, either an oral fluid specimen or a blood specimen. Some mistakes are going to come from that part as opposed to just reading the test: making sure that you got enough of a specimen, and a correct specimen, in order to get the right answer.
In 2010, it looks like there's going to be a lot of really interesting things for people who are worried about whether they have HIV.
Yes, I think that we're going to see continuing developments and evolution. The CDC works with manufacturers to try to bring things to the market that are going to be beneficial for screening.
In addition to the fourth-generation test -- the antigen/antibody combination test -- there are several other, more sensitive tests that may be able to be done on oral fluid and that might detect antibodies when the levels are lower, meaning it'll detect infections sooner.
I think the other very interesting development is that people are starting to create combinations of tests. For example, you would test for hepatitis C and HIV together at the same time with the same specimen, because people who are susceptible to one condition may be susceptible to several. If you could test for all of them at the same time, I think it'd be a huge advantage.
Let's talk a little bit more about some of the issues that have been raised since the new HIV testing recommendations came out in 2006. For instance, is there a state-by-state issue? Does each state have to start deciding whether it should do opt-in or opt-out testing?
Opt-in and opt-out are perhaps unfortunate terms because they lead to a whole lot of misunderstanding.
What the CDC's recommendation has been since 2003 is that testing for HIV ought to be pretty much the same as any other routine diagnostic or screening test that you would get. Usually, when you go to the doctor and he says, "I think you need a blood count. I think you need a cholesterol test. I think you need whatever," you don't sign for each of them separately, or make up your mind and say, "Yes, this I want. No, this I don't want." That's uncommon.
In many places, that was the case with HIV. At the time that the CDC's recommendations came out in 2006, there were 20 states that explicitly required by law that you had to sign a separate consent form and receive pre-test counseling.
Right now, there are only seven states that still have those [laws]. Thirteen states had changed [their laws] to be consistent with making it easier both for providers and for patients to get their test results.
A big part of the reason for this is what we talked about earlier, that we don't want to communicate to people that you need a special eligibility to get HIV tested.
In many circumstances -- emergency rooms are a good example -- people don't necessarily want to go into an intimate discussion of what their sexual or drug-using behavior is, especially if you're just separated by a curtain from somebody in the next bed. While they might be willing to take an HIV test, they might not be willing to go through this discussion of risk factors and things that used to be the basis for HIV testing.
The second thing that has happened in emergency departments is that at least half of the people who test positive in those programs don't have one of these traditional HIV risk factors. They basically are just -- I think the best term is "biologically unlucky." You only need to have sex with an infected person one time and that's enough to do the trick. You don't necessarily have to have some kind of pattern of risky behavior in order to acquire HIV.
So, many places have made it easier to get HIV tested. A number of emergency departments, especially in urban -- usually inner-city -- areas, have undertaken HIV testing. All of them are finding HIV infection in people who didn't know that they had it. I think that it has resulted in a significant change.
We looked at the National Health Interview Survey, a nationally represented sample. Since the 1980s, it has been asking people, "Have you been tested for HIV ever?" and, "If you've been tested, were you tested in the last 12 months?" Starting at about 2002 through 2006, the number of people who said they've ever been tested flattened out. It wasn't increasing. Although 10% of people consistently said they were tested in the last 12 months, the total number of people who said they tested hit a plateau at about 40%.4
One of the concerns is that if the same number of people say they were tested in the last year, but the total number of people who say they've been tested hasn't gone up, it means we're probably testing the same people over and over again.
Then, in 2007 [the year after the CDC's recommendations were released], the National Health Interview Survey indicated that the number of people who had ever been tested went up by about a million and a half.
Similarly, if you look at the number of new diagnoses of HIV that are reported to CDC, that had stabilized since 2002, in the range of about 38,000 new diagnoses.5 In 2007, it went up 15%, by about 5,000 people, to just over 42,000 diagnoses.6
It looks like more people are getting tested, and it looks like more people who have HIV are learning of their diagnosis. I think that we're beginning to see some evidence that this change in approach is having a positive effect.
But isn't the change so small? Even in the study we're looking at today, such a small number of people were tested compared to the overall number of people who came into the emergency room.2
I think that perhaps the misunderstanding that happened when the new recommendations came out was that suddenly it was going to sweep the entire country and we were going to test everybody in six months. No one ever anticipated that that would happen. This is something that, necessarily, is going to be incremental.
When I look at the potential 15% increase in diagnoses in the first year, I think that's a large change, not a small change. When you look at something that has been a single approach that everyone had adopted for 25 years, for the change to get this much adoption in a short period of time is actually, I think, quite positive.
I wanted to talk about something that Dr. Anthony Urbina called "institutional racism." He works at St. Vincent's Hospital in New York and found that it was very, very hard to implement HIV testing for new patient admissions. He and his colleagues initiated an extensive project where it was made very, very easy to test, but the physicians at that hospital were very reluctant to test people.7
I wouldn't use the term "institutional racism," but I would use the term "institutional inertia." I think that there has been this concept that HIV is limited to certain groups of people; that you need special qualifications to test for it; that providing somebody a positive HIV test result is really different than doing anything else in medicine.
Unfortunately, I think we created that circumstance perhaps in the early days when we didn't really know what an HIV test meant. When people were losing their jobs or getting thrown out of school when they tested HIV positive. When people were suspect simply because they got an HIV test, whether or not they tested positive. I think that it takes a while to change that.
I'm familiar with what happened at St. Vincent's. But there have been several analyses looking at the difference in attitudes between medical residents and physicians who've been in practice for a while. The physicians who are younger, who are just now in training, don't share a lot of those same feelings. I think it's going to take a while for this change to percolate through a lot of institutions before people realize that this is something that we need to approach just as a health problem.
However, I also want to be careful, because there's a maldistribution of HIV in the United States. Nearly 50% of the cases occur among African Americans, who make up 12% of the population.6
Another thing the National Center for Health Statistics does is the National Health and Nutrition Examination Survey, which shows that, for example, among African-American men in their 40s, 4.5% of them are infected with HIV.8 Nearly 3% of African-American women are infected with HIV.
I think that's not a message that that community has, nor does it resonate in what their likely potential risk is. When I did a talk about this in Miami, there was a female black preacher who got up in the audience. She said, "Look, if that's profiling, profile me. If that is the nature of the risk and I'm not aware of it, I want someone to basically be coming and saying that we need to be taking these kinds of steps."
I think we have to focus on the population segments in the U.S. where HIV is most common. There continues to be a perspective, again, that you have to have certain risk characteristics.
Another thing, I think, that is a great concern has to do with gay men. It's the one group in the country where data shows that the incidence, the rate of new infection, is going up.6 It's going down in injection drug users. It's going down in many of the other population segments. But among gay men, new cases of HIV are increasing.
I think that is something else we have to battle: complacency in that group, after having taken major steps in the 1980s to bring down the rates of new infections, perhaps because people are less familiar with someone who's had HIV or AIDS, or perhaps because people think, "Well, treatment is going to take care of it. I don't have to worry so much." We're confronting a different epidemic in that particular population group that I think we have to address.
Are there any good ideas out there about how to address it?
From my perspective, one of the things that we have to communicate is that gay men need to get tested more often. Even though a lot of them had been tested, if you're having a lot of different sexual partners, the likelihood of encountering someone who's infected is high and so you need to find out more frequently whether or not you have become infected with HIV.
There are a number of effective behavioral interventions that have been done. But I think we do have to raise awareness that we're basically headed backwards instead of forwards in terms of the effort it takes to prevent the spread of HIV among MSM.
I've heard that certain people are using PCR [polymerase chain reaction] testing before they date in New York.
PCR testing is the same as the RNA testing I was talking about before.
But it's expensive currently. It's 200 dollars.
It's expensive and it takes a while to get the result back. If you did something in the meantime, you can't necessarily trust that result. And as I mentioned, if you had been exposed less than 10 days ago and got HIV, the PCR test is going to be wrong.
The thing I think you're talking about, whether it's done with a PCR or other test, is something called serosorting, which is to use your test result to make a decision about what kind of protection you're going to use and what kind of partner you're going to encounter. I think that's something that probably warrants a little more exploration. It's quite clear that people who know they are infected are much less likely to have risky behavior with an uninfected partner: The figures show that they're about 68% less likely to.
While I'm not recommending that people have PCR tests before they go out on a Friday night, part of the CDC's 2006 recommendation is that providers should encourage patients and prospective sex partners to get tested before they initiate a new sexual relationship. I don't think that's such a farfetched idea.
How about women? If you ask a group of heterosexual women in New York, for instance, if they've ever been tested for HIV, most of them will say they have not been offered an HIV test by their gynecologist. It's just not common practice in private offices among the general population.
I want to say it hasn't been common practice. In late 2008, in fact, the American College of Obstetricians and Gynecologists came out with new recommendations for all of their members with respect to offering HIV testing. That was less than a year ago. The American College of Physicians suggested that other internists do the same kind of thing. This is the way these recommendations percolate through.
I agree that it has been uncommon, and I think that that's unfortunate. I think we're now starting to see that change, because these professional organizations obviously have influence on their members. When they strongly recommend that their members offer tests, I think we're going to see that happen much more frequently.
In New York state, we have mandatory HIV testing for all newborns. Are other states offering mandatory testing? And what are your thoughts on how this is going?
There are several other states that have adopted that. Illinois is one that has mandatory testing of newborns. The rationale for that testing is that if a baby is born to a mother who's HIV infected, and you start treatment on the baby preferably within 12 hours, you can cut that baby's chance of getting infected by about 50%.
In New York, to be honest with you, the biggest influence that the mandatory testing requirement had was to increase the proportion of women who got tested before they delivered. In other words, when the doctors found out the baby was going to be tested one way or the other, and they went to find out if they missed testing the woman, the percentage of women getting tested went from the 80s to well over 95%. It had these unintended consequences.
We are, in the New York testing, discovering many fewer unsuspected cases among the newborns simply because, as we wanted, their mothers got tested. It's more effective if you start treatment during pregnancy when the mother knows what's going on.
Those kinds of tests for newborns used to be a barometer of what was happening with respect to infection in a given location. We have seen such a dramatic decrease in the number of cases of HIV among babies who were born to an infected mother. Now the differences are infinitesimal.
One thing that the information from New York showed is that in places like New York, where incidence is still relatively high, some babies are being born to mothers who test negative early in pregnancy and get infected while they're pregnant. That has led to the recommendation that in places with high incidence, pregnant women get a second test in their third trimester in order to make sure that they didn't acquire infection since they had their last negative test.
When women are tested during pregnancy, there is no counseling. It's just a mandatory test, even though --
It's a voluntary test.
Well, it is voluntary, but they're pretty strenuous. They say, "We need to test you for HIV. Sign this --
This is a tiny bit of a sore point with me.
There's a thing called an obstetric panel. For prenatal testing, the obstetric panel right now includes blood count, blood type, a test for syphilis, a test for hepatitis and a rubella titer. It doesn't include an HIV test.
We had sought to get HIV included in that panel because the rates of testing for things like hepatitis, rubella and syphilis are well over 95%, but the rates of testing for HIV are only about 65%. The real difference is that, if you make it more difficult than checking off one box -- in other words, if you have to check off two -- the proportion of women who gets tested goes down.
HIV testing isn't mandatory for anybody. They have the opportunity to turn it down. What you're suggesting is what we are recommending, which is opt-out testing. Women should know that they're getting tested for HIV, but you don't make a big deal out of it in that circumstance because when you ask women, they don't mind. They want to make sure that the baby's protected, even if you're looking for something that's pretty rare in that circumstance.
I think that is the direction we would like to see: HIV testing happen in other circumstances where people say, "Alright, this is what we're doing today." Unless somebody comes out and says, "No, no, I don't want that," you go ahead and proceed with it. That's the kind of routine, I think, that we'd like to see.
You raised the issues that happen with HIV, well, they also happen for hepatitis, syphilis and rubella. And nobody gives that a second thought, right?
We're three years into the new CDC HIV testing recommendations. Is it normal that it takes this long to implement them?
The CDC first issued recommendations for more routine HIV screening in acute-care hospital settings -- for inpatients and outpatients -- in 1992. Those never got adopted. We consider the 1992 recommendations to be the most widely ignored recommendations the CDC had ever issued.
The issue in '92 was that effective therapy wasn't available at that time. It wasn't really until '96 that we had highly active antiretroviral therapy -- protease inhibitors -- and that we made a difference in life expectancy. In '92, there was less direct benefit for patients that would lead places to adopt those recommendations.
As I think I said earlier, I'm pleasantly surprised at how many places have begun to adopt these new HIV testing recommendations. I would have been surprised if it swept the country in a single year. To have everybody undertake this kind of screening is a complicated issue. In some states -- New York is an example -- there are still some legal barriers that providers perceive in that situation. Then there are financial barriers with respect to paying for the testing and getting reimbursement, a lot of which are still being worked out in many areas.
This is, I think, the way many things get adopted. If you look at mammography recommendations or colonoscopy recommendations, I don't think we see 100% compliance with any of those.
I don't want to suggest that I'm disappointed or that I think it's been slow. I think that we've seen a lot of positive movement. People are paying a lot of attention.
At national meetings, whether the Retrovirus conference [the Conference on Retroviruses and Opportunistic Infections] or at this conference on infectious diseases, there are increasing numbers of people who are presenting what their experience has been and showing that it's paying off.
Your mention of colonoscopy reminded me of something. What we're missing, I think, in HIV is an example of somebody who was saved by HIV testing. Katie Couric's husband died of colon cancer and she became a huge activist.
In HIV, we don't have anybody. We have Magic Johnson talking a little bit about it, but we don't have any other examples of people who say, "I was saved, and I'm taking one pill a day, and I'm cool." It's only the drug companies that find people to talk about HIV. Not the government, and not any private entity, really.
I'm not sure that I entirely agree with that. I think that we have a lot of other examples. If you start back with breast cancer, when Betty Ford was diagnosed with breast cancer, in the media, you couldn't say "breast" and you couldn't say "cancer" at that point in time. Suddenly, that became OK.
Colonoscopy: Ronald Reagan's colonoscopy was on television at one point in time. You sort of "detoxify" things with people in that regard.
One powerful spokesperson is the editor of POZ magazine. Regan Hofmann. She's a person who basically says -- and there are many people like her that say -- "I found out. I'm on medication. My life is being extended."
I don't think that we lack examples for people. I think that perhaps we lack a highly visible political person, or we lack perhaps a television newscaster or anchorperson's husband or wife that would bring attention to it.
I think that one of the powerful things that Magic Johnson did do as a celebrity is bring attention to that fact. He recently spoke at a prevention conference in Atlanta. [To listen to Magic Johnson's speech or see the official transcript, click here.] One of the things people said is, "They think that you're different because you had a lot more money and you had access to special or unusual treatment." And they encouraged him to say, "I'm doing what anybody can do in terms of controlling their HIV infections."
Yes, I think it would be helpful if we had some high-visibility spokesperson point out how much difference this made.
When the recommendations came out in 2006, it was very interesting. I was peppered with e-mails from people who said, "I'm so glad to see this happen because my daughter was going to the doctor for two years and nobody ever thought to do an HIV test." Or, "My son was having all these symptoms and all these health problems, and it wasn't until they did an HIV test that they figured it out. Now they're on treatment and life is entirely different." Perhaps it would be helpful to have that kind of spokesperson.
I think that the other thing that is likely to happen at some point in time is that a person who didn't get diagnosed is going to sue somebody for failing to diagnose them. I think that's another thing that drives medical practice in this country: litigation more than legislation or recommendations.
Or fear of litigation. [Laughs.] That is a good point. I've heard stories of elderly people having symptoms and going from hospital to hospital, doctor to doctor, to figure out what's wrong with them.
Everybody has great stories about that. Celia Maxwell at Howard University, where they're doing screening, talks about an 84-year-old person whom her institution identified with HIV. It turned out that he would go out every time his Social Security check came in and find somebody to have sex with. And he ended up getting HIV infected.
For older people, it's clear that they're less likely to discuss sexual activity with their providers, and the provider is less likely to discuss it with them. Therefore, the proportion of older people who are diagnosed very late in the course of the disease -- developing AIDS within a year -- is higher than it is for younger people.
But still, for people under the age of 50, more than 36% of people who are reported as newly diagnosed with HIV each year have developed AIDS within a year.6 Forty-five percent of them develop AIDS within three years. Given that the time between infection and development of AIDS is eight to 10 years, we're still finding most people way later than we should.
Do you feel we really need to transform society to get people to get tested, to not be afraid of the stigma and to understand that treatment is relatively simple now?
Yes. I would sort of turn it in another direction: When people perceive the benefit that HIV treatment is straightforward and effective and relatively simple, it will help for them to get into the same preventive mode that they are with other conditions in which early detection makes a difference. I think that's exactly the message that we need to get out.
What a terrific way to wrap up. Thank you very much Dr. Branson.
This transcript has been lightly edited for clarity.