In the Life: Interview with Ann Northrop [unedited footage]

[Interviewer:] So just to start out, could you tell us what your name is and your - a brief encapsulation of your involvement with AIDS activism? [Ann Northrop:] I'm Ann Northrup. I'm a longtime member of ACT UP New York since 1988. [Interviewer:] Thank you. And what sort of work did you do, or do you do now about - around AIDS drugs advertising with ACT UP? [Northrop:] ACT UP has worked on issues of drugs, drug advertising, drug accessibility, since the beginning. The first demonstrations were about availability of drugs, the need for more drug research, more drugs, and for people to have access to drugs so all of these have been intertwined. And a large part of it has also been about educating patients as to their options. So pharmaceutical advertising comes into play there a lot. [Interviewer:] And what is "Sell Wellcome"? [Northrop:] Wha-? [laughs] We did a demonstration some years ago at the New York Stock Exchange, where we attacked what is now Glaxo Wellcome, was then Burroughs Wellcome, a major British pharmaceutical company that made AZT, the first major AIDS drug. And we went to the Stock Exchange to tell the brokers to, in effect, demonstrate against the practices of the company by selling the stock. So the demonstration's slogan was "Sell Wellcome." Sell that stock. And some of our members succeeded in getting onto the floor of the exchange and stopping trading or delay in the opening of trading which was something that I think had never happened, maybe once before. They also chained themselves to posts on the exchange. And that was quite revolutionary and exciting. [Interviewer:] And when did that take place? [Northrop:] Oh, God. [laughs] I, I... would have to look at my records. I couldn't tell you exactly when. Mark Milano may be able to tell you, although I'm not sure he was there for that. Peter Staley was the the ringleader. You could give him a call. [Interviewer:] And [sigh] have you yourself, or has ACT UP done any work with the pharmaceutical companies themselves on their ad campaigns? [Northrop:] ACT UP has always tried to work with the pharmaceutical companies on any number of issues. Our strategy and our principles were always to try to talk to people first to try to have reasonable conversations with them, about their policies and practices. About their research, about their advertising, about their sales practices. So we would always try to have meetings with them. And sometimes we would have meetings, and sometimes they would refuse meetings. But either way, if the outcome was not favorable, we would then move to the demonstration phase. [Interviewer:] So the demonstrations didn't take place unless you had already att- made the attempt to contact and work with pharmaceuticals? [Northrop:] We would never do a demonstration without first trying to talk to the company and have a reasonable discussion. It was never our desire to have demonstrations or attack people. We always wanted to try to negotiate things and reason with people first. [Production:] Justin, hang on one second. [Interviewer:] Um, did you have anything that you wanted to add to, to, to your point... [Northrop:] No, that's fine. [Interviewer:] Has the rise, recent rise in direct-to-consumer advertising for AIDS drugs affected the availability of the drugs? [Northrop:] Advertising of major pharmaceutical drugs is an interesting phenomenon. It's something that happened across the board relatively few years ago, and really changed a lot of the whole relationship between consumers and medical providers, because it made consumers go in and ask for certain drugs. The downside of that, of course, is that without enough information, they ask for whatever drug is advertised. But the good side, is that particularly in the case of HIV and AIDS, they've become aware that treatment is available. And it's important to remember historically that this started out as a situation where everybody believed that to be told you had HIV was to have an immediate death sentence. No treatment available, certainly no cure, and no sense of anything you could do about it. So to have advertising appear that talked about drugs that were available, that could help, was something that was very concretely important to people with AIDS, and changed the whole atmosphere of how people thought about the disease. Both those who had it, and everybody else who was treating people with AIDS as lepers and as people who were going to disappear in five seconds. So pharmaceutical advertising has in fact, been a uniquely important aspect of this whole epidemic. That said, there are of course huge problems with it. Because as with other illnesses or diseases, you create a demand for drugs that may be too expensive, that may not be the right drugs for a particular patient. And the drug companies are very willing to do all this advertising, but less willing to really make the drugs accessible to everyone who needs them. We are seeing this currently in international issues around the world where millions and millions of people are dying for lack of access to these drugs. But even in this country, it's been a terrible problem with people unable to afford the drugs, and with government programs designed to help, running out of money to this day and unable to supply the drugs to people who need them. [Interviewer:] I'm really fascinated by that point of making the drugs accessible to people who need them. I wonder whether direct-to-consumer advertising and the expense that goes into these kind of ad campaigns affects the cost of the drugs? [Northrop:] Advertising has always been a major cost factor in every consumer product. The reason generic products are cheaper than major brands is because they don't advertise. On the other hand, the reason companies advertise is because then they sell more product and make more money. So it's a little bit of a trade-off, but pharmaceutical companies also have the highest profit margin of any industry in the world with the possible exception of weapons. So, a lot of the money they make is just pure profit and is - advertising is certainly a significant expense and a significant part of their cost, but just the profit margins they take is an unconscionable part of their cost. [quiet production chatter] Doors slam in life. [Interviewer:] Just to move away specifically from pharmaceutical advertising, for a second. Can you tell us about what Benetton did with David Kirby? [Northrop:] Was that the dying...? Yeah. Benetton, Benetton clothing did an ad a few years ago that was very controversial. They showed a man dying of AIDS. And I think, in fact, they showed him at the moment of his death, with his and his family's encouragement and permission. A lot of people hated that ad and thought it was very exploitative. And, you know, "What are you trying to do, sell clothing with the image of someone dying of AIDS?" People really were outraged by that. I was less outraged, personally, because I saw it as an educational moment. I'm less purist about where - how these things play out. And I thought it was valuable to show the reality of someone dying at that, at that point in the epidemic, we needed to see the reality of people dying. Human beings putting a face on it. So. And Benetton certainly has enough of a record of trying to do good works, that I was willing to take on faith that they had good motives in this and were not just trying to be exploitative. [Interviewer:] What - at the time, I think it was in 1992, that that ad appeared, what was the sort of general response within the community in which you were working at that time to that ad? Did that have any impact at all? [Northrop:] Most people really hated the Benetton ad. But on the other hand, I don't remember us doing anything about it in particular. We may have raised small objections, but it wasn't anything like what we've done in going after the government for its inaction and discrimination, or the pharmaceutical companies for their practices. We have not, we did not attack Benetton in anything like the same way we did people in power who are actively doing things to kill people. [Interviewer:] And, to move from Benetton […], would you, would you mind telling us what your feelings and thoughts are about the Crixivan campaign? I've got some copies of the ads if you'd like to look at them. [Northrop:] The Crixivan campaign is interesting as a case study, because it's complicated. I know the people who put that ad together, the mountain climbing ad, and what most people, of course, don't know is that everyone in that campaign, has HIV. All those mountain climbers, who people are so angry at, are people living with HIV and AIDS. So that ad was specifically designed with the principle of using people with AIDS and showing them living healthy, productive lives. People were outraged and thought that that was an unrealistic image and, and glossed over the reality of living with HIV and gave people the wrong idea. You know, it's tricky. I think it's important to show the entire range of people's experiences. I think it's important to be entirely truthful. I'd like to see a lot more advertising that dealt with real information about HIV. People don't have enough information still. They don't have enough information about safe sex. They don't have enough information about treatment options. They don't have enough information to destigmatize the disease still. There's a lot more that could be done, but personally, I was not upset about that ad because I thought it was a valid depiction of some people's lives. [Interviewer:] And the Advira [?] campaign? [Northrop:] Uh, you're gonna have to tell me what that was. I can't remember. Oh, is that the Magic Johnson...? No. [Interviewer:] That's Combivir. The Magic Johnson. I have copies of that here. Thanks Ben, keep rolling so I can […] [page turning] [Northrop:] And what's the knock on those? Again, too healthy and strong? [Interviewer:] Yeah, I'm curious about that, I mean, it's sort of interesting, I guess to me about when these ads began to appear... these campaigns. This is '94 and 1995. And I believe Crixivan was '98. [Northrop:] Mmm hmm. [Interviewer:] If I'm right about that. I'm curious about whether you have a different response to the Advira [?] campaign with also HIV-positive models as opposed to Crixivan. [Northrop:] I think these campaigns are not inappropriate in showing people that there is hope, and that they need to take care of themselves. They need to concentrate on both medical interventions, nutritional interventions, anything they can do to take care of themselves. Because the first years of the epidemic were all about a lack of hope, and about, "Oh, you have a fatal disease and you'll be gone in six months." Anything that gave people hope, I think, was an important message. Now at the same time, a lot of it is unrealistic. And we don't see ads of people sort of wasting away. We don't see people with the various side effects of some of the more powerful drugs, but in general, I think it is a good thing to talk about this publicly, to routinize to some extent having HIV, and to offer people ideas about how to take care of themselves. [Interviewer:] I want to return to a point that you made earlier, about education and the need to educate. I'm curious, it seems to me that there's a difference between somebody who can look at an ad for Advira [?] or Combivir and be able to go and speak to a treatment counselor or a doctor on a regular basis about whether these drugs would work for them, and somebody who is taking the ads directly into the emergency room. [Northrop:] Certainly. [Interviewer:] And I'm wondering about what your feelings are about people who are looking at direct-to-consumer advertising, who don't have consistent access to treatment counselors or doctors. [Northrop:] I still believe that most people in this country with HIV don't know they have it. And that that's a problem. And that people do need to know their health status and specifically their HIV status. And that they then need to be hooked up with competent treatment that will evaluate where they are and what they need to do. And that is not to say that everyone needs immediate drugs. In fact, what we found is that many, many people, maybe most need to NOT take any drugs for a long time until they are really sick or on the verge of getting sick. Everyone's case is individual. Everyone needs to be evaluated individually. And one of the dangers that - is that people who have just become HIV-infected will immediately go on drugs and then develop all sorts of problems far too early. But anything that gets people to believe that they should understand, should find out their HIV status, and then seek treatment, is to me, a plus. And I am less concerned about how that happens or where that happens, than that they start making that connection and that they find out. Because otherwise, first of all, they continue to infect a lot of other people if they don't know that they're HIV-positive. And we found that people who do know they're HIV-positive are more likely to practice safe sex and more likely to not infect others. And they begin to take care of themselves and that affects their families and the people around them. So, anything that gets people headed towards knowledge and treatment, of whatever kind, is good in my book. [Interviewer:] To pick up a point that you made earlier in that response, um, why is it that many people who have recently become infected with HIV, go into drugs immediately? [Northrop:] People still don't know enough about how treatment works. And this is a downside of the advertising because all it says essentially, is take drugs. "If you have HIV, take drugs." When in fact, what we have said as activists for 15 years now is, "Delay treatment. Wait." Wait until you really need it because the drugs can have bad side effects, can hurt you. We still don't know enough about them. We still don't have the right perfect drugs, so you need to use them sparingly and as little as possible rather than as much as possible. So the advertising can work against that, by giving people the false picture that they are the cure-all and that they need to be taken immediately. [Interviewer:] And one more, specific ad campaign to ask you about, is the Magic Johnson campaign. I've got some copies. [Northrop:] Yeah, show me those, 'cause I haven't paid attention to them recently. [Northrop sighs] [Interviewer:] Can you stay wide, please? Oop, I'm so sorry. [magazine hits ground] [Interviewer:] I was never a ball player. [laughs] [Northrop:] Sorry. [both laugh] [Northrop:] Well, the Magic Johnson ads are fascinating, first of all, because a couple years ago, he was saying, "Jesus took away his HIV." So the fact that he's now appearing publicly and admitting he still has it, is a great leap forward or, or upward, in his case. I actually think those ads are quite something. They have the side effects in huge letters right in front of you. They say it doesn't cure it. It, you know, this - it doesn't prevent transmission to anyone else. He's looking a little puffy in the face. I, I, I have a hard time arguing with the Magic Johnson ads. And because, of course, it is the African-American community that is disproportionately affected these days. And disproportionately unaware of the infections and treatment. It is, of course, spectacularly important that someone like Magic Johnson appear in these ads. Tremendously important. So, you know, I, I haven't always been happy with the way he's handled it, but I gave him huge credit for coming out in the first place, many years ago. I had a hand in contributing to his HIV safe sex education book, urging it to be completely explicit and it then got banned in stores all over the country. But he had the guts to put his name on that. So uh, you know, I'm generally in favor of this. [Interviewer:] Terrific. Just your point about people of color, and the fact the African-American community in particular. Is that something that's relatively recent that we're seeing people of color with AIDS... in advertising? [Northrop:] Oh, in advertising. [laughs] There seems to be a myth that HIV has hit the African-American community only recently. This is total nonsense. It's simply that we refuse to acknowledge that people of color were heavily impacted by HIV from the very beginning. And it's been sort of racist on our part not to acknowledge that and to concentrate only, for instance, on gay white men. But in refusing to acknowledge that, we have also left people of color out of advertising it is, as it has gone along. But, protests from communities of color, from AIDS activists for some years now, have, I think, made advertising agencies pretty conscious of the need to have diverse images in their advertising. Their images are still pretty slick. Pretty middle-class, I guess. But, in fact, they are clearly making a conscious effort to have a diverse range of images racially. [Interviewer:] One thing that I had mentioned to you over the phone was that I looked at an interview that you gave to "In the Life", 90... excuse me, [Northrop:] Lo, these many years ago. [Interviewer:] Seven years ago, yes. And it was right when Codias [?] was appearing on the market. And I think it was a price tag demonstration. And you had talked about there being no urgency to the advertising. That it was glossy. And I know that that's something that proved positive and Los Angeles gets accused of all the time. I'm curious about how you would look at some of these ads that we're talking about now, in those terms. [Northrop:] It's interesting, because here we have an epidemic that is still a raging epidemic around the world, and really out of control in most of the world. And yet, we've become a lot calmer about it here in the United States, even as it continues to be spread every single day. So, the - there feels like less of an urgent need to scream at people in this country. On the other hand, there is still a real issue and people really need to know about it. The advertising doesn't scream, but maybe it's okay that it takes a calm reasoned approach, and allows people to sort of hear it on a calmer basis and make a rational decision about getting tested and about seeking treatment. Maybe a less hysterical approach is okay at this point, as we are at this point in the epidemic. [Interviewer:] I don't want to argue with that, but I'm curious about the advertising screaming and the fact that in these advertisements, we're not seeing cost... involved. I'm wondering if you can speak to that at all. [Northrop:] The costs of these drugs are outrageous and, of course, it's not addressed in the advertising as, you know, I think car ads are the only ones that advertise price that I can think of off the top of my head. I'd be nice if there were a little price competition in drugs, but in fact, there isn't. And it's because of the whole patenting system where companies are given years of exclusivity to manufacture drugs before they have to enter a competitive market with generics, so they get to set just about any price they want. And that's why activism has been so important over the last 15 years because it has challenged the prices of a lot of drugs. Forced drug companies to lower some prices. But they're still out of range and the pharmaceutical companies still make enormous profits, and still have the backing, for instance now, of the Bush administration to jack up and protect their high prices. The Pharmaceutical Manufacturers' Association is one of the most powerful lobbies in this country and internationally. The Bush administration has been in a fight with literally every country in the world at international trade talks over protecting the patent rights of United States pharmaceutical companies. And the administration has been doing everything this pharmaceutical industry wants it to do, because they're big contributors to the political campaigns. [Interviewer:] So, let's go from there then, I guess, to the price tag demonstrations. Could you tell us what those were and what they sought to do? [Northrop:] Historically, one of the things ACT UP has been most active on, is the pricing of the drugs as an accessibility issue. If the drugs are too expensive, people can't afford them and they can't use them, no matter how good they are. And so, we have spent a lot of time demonstrating at pharmaceutical companies, demanding that they lower the prices of drugs. We have gone to headquarters in North Carolina and New Jersey and Connecticut, all over the country, to challenge pharmaceutical companies. To embarrass them publicly. To - people have chained themselves to the bottoms of trucks. They have barricaded themselves inside interior offices and had to be removed with chain saws. They have set up graveyards in the parking lots of pharmaceutical companies. We have attacked pharmaceutical company chief executives at meetings all over the country. We have gone after the drug company profits because that - they have huge, huge, unconscionable profits. Far higher profit margins than any other industry, of any other consumer product. [Interviewer:] And I hear that you carry a mean water pistol. [Northrop:] No. [Interviewer:] No? [Northrop:] I don't.. that's wrong. I'd like to. But no, that's not me. [Interviewer:] Let's go to L.A. for a moment. Could you tell us what Proof Positive is, and what your take is on it? [Northrop:] No. [laughs] I don't know. [Interviewer:] Okay, that's fine. They're the modeling agency. [Northrop:] Oh, I have heard of them, yeah. I'm in favor of people with HIV doing these ads. I think that's an appropriate thing to do. [Interviewer:] Did the advertising change at all when the FDA loosened their regulations on direct-to-consumer advertising, in 1997? [Northrop:] In, when was that? 19...[Interviewer:] 1997. [Northrop:] I don't know enough about it to really say anything about that. I know that, in fact, I tightened up some stuff in response to complaints about the Crixivan ads and some other stuff. [Interviewer:] I guess I'm wondering how advertising - I know you spoke about hope earlier. How advertising has changed the public perception of this idea of the face of AIDS? And if, in your many, many years of activism around AIDS, how you've seen the face of AIDS change in advertising? [Northrop:] It's hard to tell exactly what effect the advertising has had on public perception. It's a much bigger universe than that. It's the activism, it's news reporting. It's people with AIDS themselves speaking out. It's people getting to know people living with HIV and AIDS. That's the most powerful thing always. It's when you actually know someone, that changes your opinion of this from some, you know, mystery, fatal horror to something real and concrete and complicated. So where advertising fits into that, I'm not sure. I would guess it plays a more minor role than some of those other factors. [Production:] Two minutes, Jason. [Interviewer:] Two minutes? Mike, thanks. Can you tell us what Fuzeon is? [Northrop:] Fuzeon is a new kind of anti-HIV drug. It's a fusion inhibitor. It's something that prevents the HIV virus from actually attaching itself to the cell in the body where it usually penetrates and then kills the immune system. So, Fuzeon is a really interesting new drug because it can open up a whole new way of attacking HIV. [Interviewer:] And, what... How could Fuzeon potentially change the face, or the image of AIDS as we move into this potential era of Fuzeon? [Northrop:] I don't know whether it can really change the face of AIDS. It's a, it's another way to go. It also has big problems. It has to be injected twice a day. That's not gonna be a good way for a lot of people to use a drug. It's currently thought of as something that's going to be just a last resort for people who have failed other drugs. So we're gonna have to go a lot further with this kind of drug, before it really has any widespread use. And the price, of course, is just prohibitive.