WGBH Radio; The Callie Crossley Show

I'm Cally Crossley This is the Cali cross live show. In the play. Ken who wrote we tell ourselves that pestilence is a bad dream that will pass but it doesn't always pass. And from one bad dream to another. It's men who pass away words that aptly sum up the AIDS pandemic early on 30 years ago reports of young gay men sick with pneumonia and cancer had doctors baffled. We now know that those were the first accounts of AIDS. The disease that's infected more than 60 million people. The disease that's killed half of those infected now that AIDS is fully imbedded in America and elsewhere. What can we learn from those dark days of profound paranoia and fear. What should we take away from the art activists and unexpected heroes. The epidemic brought about and missed all the public health progress who have we left behind. Up next AIDS 30 years on how far we've come how far we need to go. First the news. From NPR News in Washington I'm Lakshmi saying a nearly

200000 acre wildfire is burning out of control in eastern Arizona. Making matters worse. High winds and bone dry conditions. The so-called Wallow Fire is burning near the Arizona New Mexico border. Voluntary evacuations are underway in the vacation town of Greer. Most people have left but Barbara Keene a bookkeeper at the historic Molly Butler lodge is sticking it out as long as she can. Like a ghost town here lot of people left just because to get out of the smoke situation and if we are evacuated it would have to be rather speedy is what I'm told but I'm pretty much packed up more than 2000 firefighters are battling flames in that area and in far southeastern Arizona. Dominique Strauss-Kahn has pleaded not guilty to charges that he attempted to rape a New York City hotel housekeeper. NPR's Margot Adler has more on the former head of the International Monetary Fund's court appearance this morning. It was a very brief proceeding Dominique Strauss-Kahn standing between his defense team was asked for his plea he said not guilty in a strong voice. There are seven charges against him they include

attempted rape and a criminal sex act. The most serious charge carries a 25 year prison sentence if convicted the next court date is set for July 18th. Strauss-Kahn resigned from the IMF after his arrest he was also to be the Socialist candidate for president of France just kind of under house arrest in a luxurious townhouse in Manhattan. Margot Adler NPR News New York. Five American lives in Iraq are lost following one of the single deadliest strikes against U.S. troops in that country in two years. Today the U.S. military said the service members were killed when rockets slammed into their compound in eastern Baghdad. Syrian state media reporting at least 40 police officers are dead from an ambush today. The latest attack came in a northern town where the Syrian military has been clashing with anti-government activists. The battle for the Olympics begins bidding for exclusive rights to broadcast the games started today with three American networks. Vying to pay the single biggest share of Olympic revenues. NPR's Howard Berkes reports that a multi-billion dollar deal is expected.

NBC one exclusive American TV rights to the last six Summer Olympics and last three Winter Games. But the network lost more than 200 million dollars broadcasting last year's Vancouver Olympics and it's not clear how far a new NBC owner Comcast is willing to go to continue the franchise. Also Dick Ebersol NBC veteran Olympics producer just left the network in a contract dispute fox and a combined ABC ESPN are also bidding the International Olympic Committee is hoping for the biggest for games deal ever more than four billion for the package that begins with the 2014 Winter Games in Sochi Russia. The IOC could pick a winner tomorrow or just keep the bidding going. Howard Berkes NPR News. Dow was down 17 points. This is NPR News. Nobel Laureate Peter Diamond is withdrawing his nomination for the Federal Reserve Board. In an op ed article on The New York Times website Sunday Dominic's press his frustration with Senate Republican critics who have blocked a floor vote on his confirmation and question his research.

The MIT professor is considered one of the foremost experts on Social Security taxation as well as the labor market. He was one of the winners of the Nobel Prize in economics last year. Scottish leaders are questioning whether the independence of their legal system is being undermined by Britain's Supreme Court. Larry Miller reports from London that Scotland has appointed a group of experts to more closely review the matter. Scotland's First Minister Alex Salmond says it's wrong for a court in another UK jurisdiction to intervene in the Scottish judicial system. He was angered after the British Supreme Court overturned a murder conviction passed by a Scottish court. Salman says that the group of legal experts will check whether the independence of Scotland's own legal system is at risk. And this is to take us forward again said that as a country some vital things that need to be understood about the integrity of a criminal justice system. Salman says that in cases where Scottish courts conflict with the UK supreme court the

decision should be handed to the European Court of Human Rights. For NPR News I'm Larry Miller in London. United Nations chief Ban Ki moon is seeking a second term. He's been widely praised for heavily promoting action on climate change nuclear disarmament and women's rights. But he is also criticized for not taking a much tougher stance on human rights violations in the world's most powerful countries. I'm Lakshmi Singh NPR News in Washington. Support for NPR comes from the William and Flora Hewlett Foundation making grants to solve social and environmental problems at home and around the world on the web at Hewlett dot org. Good afternoon I'm Kelly Crossley. This is the Cali Crossley Show this hour we're talking about AIDS. Yesterday marked the 30th anniversary of the discovery of AIDS. AIDS has struck only a reported Fifteen hundred people but it has killed almost 600.

And as yet no one with a just been cured possibly know this for the past couple of years that is spreading rapidly among homosexuals and it is a disease the day you are raising the possibility that people are dismissing it because it strikes mostly the gay community there is no question in my mind. If this were happening to you in the white straight middle class community it would have been attended to a long time ago. That was a montage from the nine thousand eighty nine AIDS documentary common threads stories from the quilt. Joining me today to talk through the medical advances that have been made and how our attitude towards the disease has changed. Our Dr. Stephen Boswell president and CEO of Fenway Health Jeff Epperly former editor of bay windows where he continues to write a column and Mark fori the assistant director of the AIDS Action Committees mail center. Welcome to you all. Thank you thank you. Listeners we want to hear from you. Are you someone who has AIDS. Did you lose someone to AIDS. Please call in with your thoughts and experiences about how things

have changed in the last 30 years or how they haven't. We're at 8 7 7 3 0 1 89 70 8 7 7 3 0 1 89 70 and you can send us a tweet or write to our Facebook page. Well I think I want to start with you list. We on the same page. So much confusion as you heard from that clip long ago about what AIDS was and is so what is it. What do we mean by the disease how is it transmit it. Well AIDS is a little bit of an old name that we used to use for people who had profound immune deficiency as a consequence of an infection with a virus that goes by the commonly known name HIV or human immunodeficiency virus. The thing we used to call AIDS was something that would show up after people have been infected for a long period of time. And it was a direct consequence of the damage that was done to their immune system by the virus

that this thing called AIDS would develop in virtually all patients who were infected who weren't able to be treated. Jeff separately in 1981 five gay man were written up in a medical journal and got the attention of a lot of doctors because they couldn't figure out what was this thing that they had and a few months later some more men were diagnosed and then doctors scientists and now a community of folks were in full scale panic. You at that time were just moving over to working at bay windows describe for us specifically what was the atmosphere then. People were frightened by that. Not just gay men but I think people were frightened in the health care community. We would get hushed telephone calls from the infectious disease ward of the hospital where we would have nurses calling us in hushed tones and telling us that they had someone who was brought in with gay what's called gay related immune deficiency. And this is back before all these services were professionalize we were people were

volunteers a lot of them when you had House Painters you had people who were small stores who were basically just volunteering at this time because there was really nobody else doing it so you would find you know one minute you would find yourself answering telephones the next minute you'd find yourself on the infectious disease ward talking to some young man whose immune system was collapsing and trying to talk to the people the hospital to make sure the ordinaries were delivering food and then you know the next day you might be calling around to funeral homes trying to find people who would take bodies so it was really we were flying by the seat of our pants at that point. Mark for you I'm not certain the male center was open then but AIDS Action Committee certainly was formed shortly after this got going as a community response to you know trying to answer some of the panic that Jeff just explained. So these days the male center is about the business of counseling and identifying those people who might have the disease. And I think a

lot of folks are thinking today well not so many people but that's simply not true. That is not the case. People are getting infected in the United States by the minute every nine minutes or so in the United States someone's becoming infected with HIV and so if we think about sort of the frequency of that how many people doubt calculated to it is still quite the epidemic and it's it's everywhere and it's it's no longer in this little tiny pocket it's no longer we can point to that we can no longer say it's that it's us it's everyone at this point in time. The infection looks different and the response is different it's a little bit more as as as Jeff alluded to it is a little bit more professionalized now there is certainly a lot of folks who dedicate a lot of time energy effort and sort of creating ways to interface with this infection and to sort of decrease the impact of the epidemic on the population as well as the infection on the individual and that's sort of where AIDS Action comes into play we originally started as an organization to help address those issues that Jeff had mentioned. Finding a doctor finding a hospital where can I go what's the response Who do I talk to who will deal with these bodies. And fortunately we're not

in a space where those are the pressing issues is how do we maintain a quality of life for somebody how do you make sure that people have a warm bed to sleep in food. How can we get folks back to work if that's what their goals are how can we ensure that folks are engaged to the best of their ability within the medical care system. And because as we know treatment is care and treatment is eventually one of the routes to prevention. That was my guest Mark for he is the assistant director of the AIDS Action Committees mail center. My other guest Jeff Everly former editor of bay windows where he continues to write a column. And Dr. Steven Boswell president and CEO of Fenway Health. We're talking about 30 years after the diagnosis of AIDS and what has happened in this country in terms of attitude treatment. Acceptance of the disease the full gamut and we're taking your calls today at 8 7 7 3 0 1 8 9 seventy 8 7 7 3 0 1 89 70. Call in or you can send us a comment to our Facebook page. Now Dr. Boswell you have a

rich history of working with this disease in many forms you know from working on President Clinton's committee to really look at it with doctors and scientists from that one thousand eighty one moment. When did doctors really start getting a grip on how devastating this was and really what it meant. Well I think for some of us at the very beginning especially those of us who were from some of the communities that were affected most profoundly by the disease it was pretty clear very early in the early 80s that this was something entirely new and something we had no understanding of especially it before 1984. And one that and something that was clearly affecting people in a very rapidly increasing rate in the early 80s and many institutions I think many of the institutions that we

grow to depend on now for health needs were some of the institutions that initially didn't respond. As we would hope that they might with regard to this in part because I think they didn't recognize it as significant a problem as many of us did. So many organizations kind of sprung up to meet that need in Fenway Health which had been in existence for some 10 years at that point in time really found itself in the middle of a burgeoning medical need and had very quickly built itself into an organization that could care for a profoundly ill people. From a doctor's perspective I mean there was a lot going on with healthcare workers like we don't know what this is and we don't want it and you know talk to us a little bit about that because you know it's it's one thing to recognize that there is there's a devastating disease that it that's affecting a lot of people. It's another thing to realize that the people

that you might turn to for help are a little afraid of you. That's that's weird. There was there was a great deal of fear early on in the disease shortly after it was recognized as grid gay related to beon deficiency syndrome. It was pretty clear that this was something that affected a group of people who were disenfranchised which I think was part of what really created some of the fear to start with this was a group that that many in the medical field and health care generally had relatively little knowledge of or experience with. And these were all for the most part back then pretty young people who shouldn't be ill. By all rights and as a consequence it created all sorts of fear among the very people who were caring for them because they looked a lot like they did. They were the same age in some cases younger and they were profoundly ill. So I think in a

number of ways it created a great deal of fear not knowing what it was not knowing that there was an infectious agent involved. As they later learned as we learn more about it it became easier to put it into a scientific way of understanding it. That allowed I think people to deal with their fears early on it was terribly frightening thing for many people so I was here in Boston in my just starting my training as a clinician and I still remember to this day experiences in the hospital where people would would leave trays food. People would bring food to patients instead of taking the trays into the rooms would actually just leave the trays outside the room assuming someone would take them in. People double glove when they went into rooms with people who were HIV positive. The fear really

manifested itself in a lot of different ways there were times when I quite honestly had to struggle with some other clinicians about the appropriate way that a patient should be cared for. In part because of that that fear right. I want to get a caller in on this conversation Ray from eastward Connecticut you're on the Kelly Crossley Show. Go ahead please. Hello. Hi It's a pleasure to talk to you I was a soldier on the front lines if you will. I worked in a large teaching hospital thousands dead when the wave hit and it was it was all of those things. It was a moral and emotional struggle and a psychological terror. And to see people my age and progressively younger coming in with what looked like the death sentence upon them. And many of them had their own baggage. I mean it wasn't just homosexuals initially. You know it was the 3H disease patients homosexuals and heroin.

That's right. But he was fairly active as a generation died because of that disease. I mean we did it. I worked there and sometimes I wonder how I how I survive the emotional part of it the physical and. The medical part of it that was a job. But but to connect with these people these people excuse me to connect with people in that situation and the ones that were most frightening and I thought I would submit that they're still out there today or people who acquire the disease and ignorance from someone who may not know that they're passing it on. It I find it abhorrent. The level of not treatment or ignorance or or failure of commitment that should suppress a disease that it's unmanageable is preventable nowadays. Right right thank you so much for the call we're going to get into some of those issues you've raised thank you very much for the call. Jeff I'm wondering a question to you. Early on when it was when the public was told what this was

they said well you could get it through an exchange of bodily fluids and that seemed to really ratchet up the panic because nobody just came out and said blood semen that you know secretions. So you were left to the wild imagination that left you know colleagues of Dr Boswell's leaving food out in the hallway because you don't know what's going on. I spent most of my time doing in services at schools. I also taught them for comes from companies like the telephone company would have in services for their phone installers so it would go out. I went to one of the on the Cape because Provincetown and they had all the finest hours in the Cape attend this service where we had to tell them that there were very specific ways that this was transmitted that it was not transmitted through air assaults through coughing and so on and so forth so there was a lot of panic and that's what we're really what we were were a lot of it was a damage control mode at that point we were just trying to get people to not panic.

And you know so people could get their phones installed. That was was that was a lot of that. Mark you heard what our caller said about a lot of people not knowing. Well you're right. Right in the heart of that you know that a lot of people don't know that they have the illness. That's one of the few Constance's as we look over the last 30 years one of the things that hasn't changed is there's still a lot of folks that just don't know. And I work with folks every day we have conversations about what is transmission What is prevention. And it's a very rare occasion that I meet with somebody there isn't some room to clear up some level of misinformation or when they say they've heard something but they don't really know and I think especially working. I work with gay and bisexual men a lot of guys that I work with. We're just supposed to know this. And when you're supposed to know something you're petrified to ask because it indicates that you don't know and there's not some grand MOSIS where everyone who identifies as gay or bisexual suddenly has the knowledge of what transmission and Prevention is and so a lot of work that we do is just times explaining what is transmission and what is prevention and

reinforcing some of the steps that folks are already taking that does prevention for them and some of them aren't necessarily about being doing prevention it's just sort of like what they do or what they choose not to do and and then taking time to clear up just misconceptions and misinformation. And as we're going to talk about when we come back after this break there are some people just rejecting that information because they're resentful of having to have this imposed on them now or talk. Be about eight thirty years since the first accounts of the disease were officially documented and we're looking for your calls listeners. 8 7 7 3 0 1 8 0 9 7 8 7 7 3 0 1 89 70 call and if you need advice call in if you want to remember someone who died from AIDS. Call if you are a survivor who has been a fit. From the new drug regimen. 8 7 7 3 0 170 8 7 7 3 0 1 0 9 7. We'll be back after this break stay with us. Coming.

Up. Support for WGBH comes from you. And from the Boston speakers Series 7 evenings of personal perspectives and insights at Boston Symphony Hall featuring Tom Brokaw Valerie Plane Wilson David McCullough and others. Information at Boston speakers series dot org. And from the New England mobile book fair in Newton. For 54 years New England's independent bookstore. The New England mobile book fair. Find them online at an e-book fair dot com. That's an e-book fair dot com. On the next FRESH AIR. Former boxing champ Sugar Ray Leonard. There was no sweeter feeling than we thought the perfect punch because you get this little tingling sensation to put down your arms to let you know that you've hit the jackpot. Lehner has a new autobiography joining us. This afternoon. T I'm eating 97 G.B. aid. To the millions of individuals who support public broadcasting. Thank you.

Now more than ever your support is absolutely essential to providing intelligent news music and entertainment to your entire community. Here in New England hundreds of companies stand with their employees and supporting local nonprofits by offering matching gifts. That means that if you give to WGBH your employer might too. Learn more at WGBH dot org slash matching gifts. We're running out of oxygen. I have so many people that I can trade the world but it's not an easy decision for anyone to make. Coming up at 3 o'clock on an eighty nine point seven W. chibi. Boston NPR station for news and culture. I'm Kalee Crossley. This is the Calla Crossley Show. If you're just tuning in we're taking stock of AIDS. Thirty years on since the disease was diagnosed. I'm joined by Dr. Stephen Boswell president and CEO of Fenway Health. Jeff Epperly former editor of bay windows where he continues to write a column. And Mark

fori the assistant director of the AIDS Action Committees mail center listeners were 8 7 7 3 0 1 89 70 8 7 7 3 0 1 89 70 because of medical advances have pushed AIDS back into the recesses of our collective conscience. And one of advances in AIDS medical treatment meant for you 8 7 7 3 0 1 89 70 8 7 7 3 0 1 89 70 and you can send us a tweet or write to our Facebook page. Now that's one thing I want to bring up is that where we are today 30 years later very much has to do with some of the innovative medical treatments that happen. But if I may I'm going to play a clip from a play that was well-known at the time this is an HBO adaptation of Tony Kushner's 1993 play Angels in America. At this time. Listeners it was assumed if you got aids you died. So in this scene the character

Pryor pulls back his shirt to show his boyfriend Louis a purple splotch on his chest. Yes maybe. Reason number one. Long dark kiss of the Angel of Death. Oh the. Reason I. Fall or unleash me. The American Legion is Legionnaires disease. The troubles are legally you stopped. Me I'm handling this well. And. I. Know. You know. I can find a way to spare you baby. I was struck by that clip Dr. Boswell and also by a piece written by a gentleman in the New York Times which started off saying I haven't died on schedule. He contract the disease years ago and he said he the whole the disease and the threat of death pretty much defined half his life until these new drug treatments came about. Tell us about these

drug treatments and what they've meant. Well the drug treatments that we're talking about are really a collection of medications given as what sometimes referred to as a cocktail of medications usually three or four medications given simultaneously. These are some of the same medications that we used early on in the epidemic but what we discovered was using these medications in combination with some new medications co-produce inhibitors that we could actually arrest the virus and actually prevent it from doing further harm to the immune system. So when these medications first became available and were initially being treated I remember one of the very first studies where I was caring for a patient who was involved in one of the very earliest of the Proteus inhibitors. And it's the first time I remember thinking in my life as a professional that I had ever seen someone and I've been involved in a number of research trials before this a patient leaving my office one day coming back a week later

having gained 15 pounds and feeling dramatically better that I actually realized I didn't need fancy biostatistics to tell me that this was actually working. It was clear within a few months that we were making major progress in terms of taking care of people with HIV. And since that time we've seen consistent but very gradual improvement in the medications especially their side effects. It's much easier to take the medications now so generally most of them can be taken once a day. So it makes the whole process of taking medications and living with the virus and living a life with the virus much easier to do so I think. This person's description of how their life changed is is pretty consistent with what I saw. As a physician caring for large numbers of people with HIV. Jeff Epperly formerly of the bay windows and still a columnist there.

You know it's one thing to think you're going to die and then the next moment or several moments later to realize well maybe I have a chronic illness that you know I too could just take these pills and continue to live. But there's a flipside of that a lot of people now don't think that AIDS has any power to. To be harmful I guess is really to really be life and death anymore because because it's thought to be a disease like diabetes you just can take something for and live right. And unlike diabetes unlike a lot of other manageable chronic serious illnesses we don't know what the law and Steven can probably speak to this better than I can but we don't know what the long term prognosis are for these people in terms of taking these drugs for 10 20 30 years and a lot of people don't respond well I mean they respond well in terms of keeping their viral load down they respond well to their lab numbers. But these are toxic drugs a lot of them and sometimes they're they stop working and some

people have to switch. And so you even if you didn't have side effects on one regimen you might have side effects of another. So this is I mean I think it's important for people to know that this is not something where you just can just go on with your life and never have to worry about it. There are people who are starting to have some side effects in terms of you know their liver enzymes or and so forth so there's a lot going on that we don't know so. People need to know the first line of defense is to not just take these drugs because because they're not it's not good how to take these every single day for the rest of your life. Let me let me double back to Dr. Boswell and just ask about the side effects how bad how bad are they. Well the side effects depend very much on them. This particular regimen that you're taking So some of them can have gastrointestinal side effects sometimes vomiting diarrhea is not uncommon. But most of these kinds of side effects are far fewer in terms of how frequently they occur.

So at least in my experience as a clinician they're they're much more manageable than they were 15 20 years ago with the medications we were using. And and and most people can can fit them into their lives pretty easily I mean back then people really their identity was as someone living with AIDS and that was really there a big part of their existence. What was interesting to me around 1906 when we got to a place where the medications were clearly benefiting people most of these people had gotten to a place they're relatively young where they had come to peace with the notion that they were going to die of the disease. And that process took years for many of them to to go through. What was interesting to me is when it became clear that the treatments were having a significant effect on mortality in people living with HIV. It took years for

many of those patients to begin to change their view. As someone who was dying to someone who actually had a life to look forward to. So you know things have changed dramatically I think. There is this danger now that that we go so far in that direction that people think that having this virus doesn't have serious consequences for your health. And that is definitely not the case. Yes is this the gentleman who wrote the piece for The New York Times Mark. Well I believe it's how you pronounce his name. He said he took all these pills and began the whack a mole phase of living with AIDS. The new AIDS pill might slow the ravaging of my immune system but it clobbered my liver so I had to take another pill for that which put something at risk. And on and on. But then he goes on to say but the dead don't have problems. So I am grateful for mine I was alive in my deathly companion less insistent AIDS and I have been together for almost 30 years now. So that's a pretty powerful statement remark for him. I want to know

the impact you're there meeting with these young men of today and they're looking at Magic Johnson and he's walking around looking pretty darn healthy. And he's been on these pills a long time and just you know I don't hear him talking about his liver problems or any other side effects by the way. Well I think he has a really great vantage point to look at the world from he is I'm sure very comfortable in his income and in his life and his access to medical care and treatment and you know where we all to be incredibly well-to-do athletes who are very famous and had at our disposal the latest treatments and updates. We may all never have to worry about our liver function but when you are marginally housed at best when you have no house when you struggle to get to your doctor's appointment because you have a job that you get an hourly wage and you have to take time off for your medical coverage is not anywhere near where it could be or should be. That's going to be a really different situation than how it's been some of these drugs by the way I cook. I think it's about $15000 a

year per patient and what Dr. bottle may have a better perspective as he is on the other side of that. That's a good good approximation. So this is not cheap. No. Yeah and that's just the financial cost if we look at the quality of living and quality of life if we think about what it is every day to have diarrhea. Sure it's something we can manage but I would prefer not to have to manage something like that. And then we sort of get this false sense of security where folks sort of think that everything's going to be fine and everything could very well be fine if we maintain over 95 percent of hearing straight to our medication. So that means almost every day I'm perfect and I don't know about the other members of the panel but I can say almost every day I am profoundly imperfect and so to say that I'm going to maintain this regime of taking these medications on a daily basis may not be realistic for a lot of folks regardless of how stable their house is or how stable their income is. Life happens and you know we have some of these easier regimes like one a day pills. Sure that's going to make it a lot easier than having to member have

four pills which ones I take first which one do I leave in the pit. Great we've solved some of those issues but at the same time that's not everybody's issue. Mark I also want you to speak to this is Mark for a who is the assistant director of the AIDS Action Committees mail center and is in constant interaction with people who are coming in for both counseling and diagnosis and treatment. There are a lot of young people whose attitude is I'm so angry. You folks in the 60s in the 70s have you know live free lifestyle. And now I have to pay for your excesses by having to deal with this disease. There's a lot of anger and there's a lot of blaming. And what I what I find to be most sort of common with I every session I do is going to be different and some in many ways one of the more common threads is everybody who fits into a younger cohort says it's all those older guys who had all that crazy fun ruined it for me and all the people I'm a fountain all the coding I say those kids today have no idea they're going out and

taking crazy risk and if they knew what it was like in the bad old days they wouldn't be doing what they're doing and everybody wants to disassociate themselves from the responsibility they have over their own body and as much as we as individuals are working to impact and help folks address the issues that that maybe put in risk. Ultimately we are all responsible for our own choices and actions. Which is a nice safe vantage point to say here is my headphones in a studio when it comes down to the moment. A lot of times where risk happens is not we're using our most rational and logical thinking patterns we may be swept up in the fun that we're about to have you know we talk about sex too you know that's this when done right yeah scenting Leno actually funny right. Exactly but they're you know young people have to across the board have to deal with this. I want to just get your response to that but just to put these stats out to our listeners 25 million people in the world are dead from AIDS 33 million living with AIDS and

a million in the U.S. So these are big numbers. And how do you respond to what Mark just said about young people's response. Well the point I was trying to make to people is if you go back and look at the history of syphilis back before syphilis was a treatable disease back when it was when it would could be fatal and there was no way to treat it and go back and look at the history of say for instance the armed forces in the steps I used that how difficult it was to try and get. Men in the armed forces to protect themselves against some of the sex which has been diseases even though they knew how they were transmitted and they knew that it could be fatal. This is always been a problem with human behavior you're not talking about rational thought you're not you're talking about people's sexual behavior you're talking about people's emotional lives. And to expect for you to know it's easy to blame but to expect people to act rationally 100 percent of the time their entire lives that's I mean to expect them to person to take protection they were you know sitting back in the here in the studio you

people say well if this is fatal I would always take take precautions when I had sex but that's rocking about every single sexual encounter for the rest of your life and that's expecting a lot. Based on what we know about human behavior. All right. Patty from Cambridge Go ahead please you're on the Kelly Crossley Show. Hi thanks for taking my call. First of all I admire all the work you gentlemen do I started volunteering on the AIDS Action hotline in 1991 and did it for five years in Boston. And I did it because my professor Paul Marx died of AIDS and I was unable to take his class. And I decided that rather than moan and groan I felt sorry for myself like do something and ended up getting a master's and working in HIV services here in the Boston area. And I think you've already been touching on the medically what I was going to mention which is just that I. Of all the people I knew who are dead my ex bosses are dead. I mean so many people I know are dead because I got into the work in 1991 pre pre cocktail therapy and the first year I worked on the North Shore 13 people died in a small agency that I worked with including the founder. And it's all I mean of

course it's very upsetting personally. But you know as a rational person in my now late 40s I think of them and I just think if you know they would have given anything to know that condoms and bleach could save their lives because you know my ex-boss has got HIV from all kinds of ways. And you know I understand human behavior I do. You know and I don't want to blame the victim that's that's not where I'm coming from. But it does upset me every time I see a documentary and there are some you know you know HIV positive person you know in there maybe in their mid 30s they're very well educated and they just got infected and because of the work I did trying to counsel people how to save their own lives. I'm talking five years on the phone and it's very very upsetting for me personally. And I just wonder like I mean yes we have to be empathetic I believe it's Marcus talking about we can't be perfect all the time. Absolutely. I understand that. I've talked to a heroin addict who came to me crying because their drugs were locked in the homeless shelter and they were thrown out for the day. You know I was I was in direct service. But at the same time. I

do feel like there is some degree of personal responsibility about. Absolutely you have a way to not get this. You know if you are a dirt poor woman with no control of your sexuality. I understand if you're a well-educated person with resources. As I said it's not about whiny people. But right let's face it there's a lot of money in the world to pay for all of this. Well thank you very much for the call Patty and I'm going to let Marc respond to you. Mark thank you. So having a comfortable socio economic status is in no way going to protect you from yourself and from your life and from your choices. What goes into someone's choices or on their sex and sexual activity is not necessarily going to be oh I feel like having some friction in some fun places. It could be I feel lonely I feel isolated. I don't feel good enough about myself. I'm going to compromise what I want to do and the way I want to do it because someone will just be near me and and I can have a sense of intimacy for just a minute. And what can be a very lonely experience. And so I think that to blame someone or to

play that whole you should know better. We should all know better every time our hand hits the bottom of that bag of chips. We should know better every time we were run through a yellow light every time we do things that are incredibly Monday and we put our lives and bodies at risk on a daily basis and so were we to spend all of our time saying you should've. We've done is say yes should have. Well I think maybe what I hear also in Patty's comment is that you know there's ways for some of this education to get out better perhaps and we can use those resources and let's talk about that on the other side of the break we're talking about AIDS this hour it's been 30 years since the first accounts of the disease were officially documented and listeners we want you to get in on the conversation. 8 7 7 3 0 180 970 8 7 7 3 0 1 89 70. We're back after this break. Keep your dial an eighty nine point seven. Support for WGBH comes from news. And from the Newport yachting center Newport Rhode

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tickets to treadmills to tortillas from museums to massages to music lusts from jewelry to gym shoes to jazz clubs you could use your WGBH member card all over New England to save a little more on all kinds of goods and services. Learn how much it pays to support public broadcasting online at WGBH dot org. In 2002 voters approved a state ballot measure requiring students to learn all subjects in English and Andrea Smardon join me next week as I explore the measure's impact in public schools only here on eighty nine point seven WGBH. I'm Cali Crossland This is the Calla Crossley Show. If you're just joining us we're talking about 30 years of AIDS reflecting on the history and best hopes for ending the pandemic. I'm joined by Dr. Stephen Boswell president and CEO of Fenway Health. Jeff Epperly former editor of bay windows where he continues to write a column. And Mark fori the assistant director of the AIDS Action Committee mail center. Listeners who want you in

on the conversation at 8 7 7 3 0 1 89 70 8 7 7 3 0 1 89 70. Now before the break we're talking about education and I I want to emphasize that there is there are a community of folks in which education appears to be failing at this moment and that's minority populations with a lot of people may not understand that though this was early on in the 80s identified as quote unquote a gay plague a gay disease. It shifted now and currently there's twelve point six percent of the population of the U.S. are African-American but nearly half of new HIV infections fall in this category as well as 50 percent of AIDS related deaths. And when we talk about education and just our leaders and government responding to this kind of information I am reminded of the 2004 vice presidential debate. PBS is going to ask a question of the then candidates Dick Cheney and John Edwards and we'll hear what they have to say.

In particular I want to talk to you about AIDS and not about AIDS in China or Africa but AIDS right here in this country where black women between the ages of 25 and 44 are 13 times more likely to die of the disease than their counterparts. What should the government's role be in helping to end the growth of this epidemic here in the United States we've made significant progress. I had not heard those numbers with respect to African-American women I was not aware that it was that severe and hypodermic there because we have made progress in terms of the overall rate of AIDS infection and. Think primarily through a combination of education and public awareness as well as the development as a result of research of drugs that allow people to live longer lives even though they are infected. Obviously we need to do more than the vice president spoke about doing research making sure we have the drugs available and making sure that we do everything possible to have prevention. But it's a bigger question than that. You know we have five million Americans who've lost their health

care coverage in the last four years. Forty five million Americans without health care coverage. We have children who don't have health care coverage. If if if kids and adults don't have access to preventive care if they're not getting the health care that they may day after day after day the possibility of not only developing AIDS and having a problem having a problem a life threatening problem but the problem of developing other life threatening diseases is there every day of their lives. Dr. Boswell we edited their comments because the first part of both of their responses was cluelessness is they didn't have any clue about how the AIDS infection had shifted and what populations they actually knew nothing about us infection. They wanted to both both of them talked about what was happening in Africa. You know you've What are you working with some government folks. What can we do about it. And hasn't. Has it been. Has it become better in their understanding and response to this epidemic I mean this is 2004 we're talking about. That's that's not that long

ago. Well like in so many things I think they're right in one way in that things had improved significantly but they hadn't improved for everyone and access to some of these advances over the last few years has not been uniformly available to all people in fact we still have significant waiting lists for medications to treat HIV disease in many states in the United States. So. That's a very big problem and one that I think we need to address and address quickly this is after all a life threatening condition. So I think it is a remarkable thing around the time that this was was that clip was taken from. There was a great deal of attention being shifted to the worldwide epidemic through the program. And as a consequence many of us who were involved in the epidemic here in

the states felt a real sense of of a decreasing amount of attention being focused on the national epidemic and in particular in the very large problem that we still have some 200000 individuals who are infected and don't know it. And trying to reach those individuals and and get them into care quickly can have both a beneficial effect in their overall health but also can significantly decrease the risk that others will get the infection. We've learned recently just in the last couple of months that the use of medications in a person who's already positive when they're having contact with another individual that could potentially transmit the virus that actually putting that person who's infected on medications can signify significantly decrease the risk of transmission to another person.

This concept of there was a study done at Fenway one of the studies and found what you wrecked and so this kind of information really helps to inform what what else we can be doing to try to decrease the amount of new infections by making treatment more readily available to people who are infected. And the first step in doing that is to first identify that you're HIV positive and and that's what we've not done a very good job of doing. Well what you're talking about is prevention and it's all caught up in education and I have to say before I take this caller that one of the things that really pushed the information and the education were really the activists the folks who you know in the old days were doing act up. Who are you know demonstrating in no uncertain terms that this is happening in the and the and it's spreading all over the place that's what pushed a lot of the science and government and other organizations to to do something about it. So Emerson from Boston Go ahead please you're on the Kalak Ross Lee show. Hi how are you. So I want to talk about Dr Boswell's comment because I agree

that reducing community viral load and individual viral load is one of the best prevention tools that we have. You know even though we have health care reform in Massachusetts we still have a pretty high number of HIV positive people who were once in care who aren't anymore. So does anybody at all or any of you have strategies to find these people. Most of them are you know highly connected to poverty stricken people so how do we find these people and get them back into care which will really reduce the community. Love and leave you much decrease in transmission. Thank you very much for the call him and Dr. Boswell. Well I think it's first important to recognize that this is not a problem that unique to each of the infections for all sorts of problems high blood pressure. Even even problems like diabetes physicians and the and the way we practice medicine in the United States right now it's

very focused kind of epis episodes of illness. We take care of people when they're sick. This new approach that the Accountable Care Act has really pushed that that's health reform is really one for that's trying to push the notion of taking care of populations of people so that when when you haven't seen rather than waiting for the patient to come to you as a clinician if you haven't seen a patient in six months or nine months or a year and you feel like you've lost track and you should have seen them in that period of time it really shifts the burden of responsibility for that to the clinician to go out and find that individual to reach out and to try to pull them back into care that in large part I think is is what we need to do to not just improve our care of people who are HIV positive but to also improve our care to all people with many other conditions.

Jeff and these kinds of conversations I always ask. My guess is if they can speak to the lister to say why should I. I am not infected. I am not engaging in quote unquote at risk behavior. I don't know any people who are. Why do I care about this. And Dr Boswell just spoke about people who are out there can't get their medication who are not coming back in their care about this. For me the conversation starts with why I always ask people Do you think health care is a right. And if you think half Kelkar is not a right then we probably can't talk very and have a lot of back and forth between us about this but if you think health care is a right that getting people into treatment as Dr Boswell said only it's cheaper than treating them when they're in the hospital with with infections but most important now with a study that he just mentioned it appears that these people are much less infectious. If we get them into treatment that's the big thing now the big message now is if we can get

people into treatment to get their viral loads down they're less infectious and there we could really have a huge impact on this epidemic. The problem is that we're going into this kind of a mean period in our politics right now where. Used to be we. I thought we had gotten past the point where you would hear serious politicians elected officials say you got this disease because of your own behavior why should we care about this. And I thought we had sort of gotten past that but now we seem to be re-entering that kind of period and that's a little frightening right now. Mark fori from a selfish perspective I wonder if you could speak to it in that you know back in the day you could maybe identify somebody who had AIDS and you don't know what he said next of walking next to talking next to it. I think that's part of it to really sort of speak to the listener. If we intend to as a society live up to what we call the American dream the foundation of the American dream is equality and that all people have equal access to rights liberty pursuit of happiness and all that so if we look at that and that's really what we are as a country.

Then we need to address the societal issues that make those on realistic and it's those same societal issues that impact all of the infections and all the diseases that Dr Boswell mentioned and detected disproportional rates across socio economic status and racial identities and so if we need to sort of address American society and say this is what's putting these folks most marginalized most at risk then to speak to the individual caller. I think the true strength involves accessing those individuals to get out there and say there's got to be someone who knows three people that haven't been to the doctor. They might live in the same neighborhood they might live in the same block they might shop at the same store and access those strengths of the communities because the one thing that the sort that the prevention and treatment of this disease has brought us is that there is resiliency in our humanity is we have untapped and unrecognized strength. If we look at the gay and bisexual men's community there are strengths and resiliency in there. They've kept men alive for 30 years when it was someone who owned a little store and it was someone who painted a house that was showing up and saying you need to bring that tray

into someone's hospital when it was OK we will arrange this funeral for you. These are the strengths that we need to find and capitalize on because. This this isn't going to be solved by giving enough people enough medications we need to get to the root causes and bring folks together to have a conversation and say we have plans. Can you help us make them best. Dr. Boswell been some conversation about vaccines for this there is no cure. Want to remind people Larry Kramer whom some may recognize as a name who are very active activists in the aids when the AIDS pandemic began really and still is. I wrote a very harsh piece for CNN.com and said he believes that people are not the drug companies particularly are not working toward a vaccine because it's more lucrative for them to to sell the drugs that keep people alive the chronic the chronic drugs.

Well I. You know I think that there definitely is an issue about drug companies and the kind of private business model around the development of vaccines not just for HIV but vaccines generally because for a lot of pharmaceutical companies they in fact aren't as profitable as the medications themselves. But that's the system that we've set up for drug development. And and I think we can change some things about that. I haven't done a focus on that just go right. So my but I think that's that's really not the fundamental issue the fundamental issue is really the science and this virus is a rapidly rapidly changing bira. So that the virus we see today is a very different virus than we saw just 10 years ago. And as a consequence this rapid change makes it very difficult for us to help the immune system learn to identify the virus because in fact tomorrow the

virus is slightly different than it was today. This virus has developed all sorts of ways of kind of masking itself from the immune system and in fact it attacks the immune system so that very. Damage that it does to the immune system also makes it harder for the virus to develop in a meaningful immune response. So where we are today although there have been tremendous advances we are at the earliest probably 10 years away from a vaccine would be available and in the meantime it's prevention it's counseling and it's awareness. Thank you all very much. We've been marking 30 years of AIDS have been joined by Dr. Steven Boswell president and CEO of Fenway Health. Jeff Epperly former editor of bay windows and Mark former the assistant director of the AIDS Action Committee. Male center you can keep on top of the Calla Crossley Show WGBH dot org slash Calla Crossley follow us on Twitter or become a fan of the Calla Crossley Show on Facebook. Today Show was engineered by Antonio Lee art produced by Chelsea Mercer. Well

Rose lip and Abbey Ruzicka we're a production of WGBH radio Boston's NPR station for news and culture.