AIDS Continues to Shape U.S., World Policies
[Sorry, the video for this story has expired, but you can still read the transcript below. ]
RAY SUAREZ: We have four views. Dr. Wafaa el-Sadr is the director of the International Center for AIDS Care and Treatment Programs at Columbia University’s Mailman School of Public Health. She’s also chief of infectious disease at Harlem Hospital.
Noerine Kaleeba is founder of the AIDS Support Organization of Uganda, Africa’s largest community support group. Her husband died of AIDS in 1987; she does not have HIV.
Eric Sawyer is the co-founder of ACT-UP New York, an AIDS activist group, and co-founder of Housing Works, the largest provider of housing for people with AIDS in the U.S. Mr. Sawyer has been HIV-positive since 1981.
And Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases.
Dr. el-Sadr, we just heard a story from the early days of the public’s awareness of AIDS. How have things changed since then, not only in who’s getting the disease, but in how the world thinks about what AIDS is?
DR. WAFAA EL-SADR, International Center for AIDS Care and Treatment Programs: It’s quite remarkable to think back on that moment when Rock Hudson disclosed that he had AIDS and to also realize the dilemmas and the struggles that he faced in trying to make that announcement.
I think today, unfortunately, while people are much more aware of the HIV epidemic, globally and in this country, there are still insurmountable barriers; there are still challenges that people with HIV face every day.
RAY SUAREZ: Eric Sawyer, as I mentioned, you’ve been HIV-positive for a quarter-century, probably far longer than most people even imagined one could be HIV-positive. You’ve lived the trajectory of this disease. What changes have you seen in that time?
ERIC SAWYER, ACT-UP New York: Well, I’ve seen remarkable changes, both for people like myself living with the virus in this country and with regard to the general population.
When HIV first emerged, and even in the time when Rock Hudson disclosed his status, there were almost no safety nets available to take care of people with AIDS. Groups were being formed by the communities most impacted by AIDS, such as the Gay Men’s Health Crisis, to take care of people living with AIDS.
People were having potluck dinners where they were passing the hat to collect money to pay people’s rents or their medical bills because there was no easy access to income maintenance or welfare payments. There were no fast access to Medicare or Medicaid, so that people who didn’t have private health insurance or the ability to pay could not get any medical care themselves, unless their friends band together to pay for it.
It took a long time. There were many class-action lawsuits brought against city, state, local governments, as well as the federal government, to try to get expedited access to the Medicaid system, to social support systems such as welfare or housing allowances, to ensure that people who were poor that had AIDS didn’t die in the streets, as was happening in places like New York City.
And, since that time, we’ve had incredible advances in medical treatment. As you mentioned, I’ve been symptomatic of HIV since 1981. That’s long before the virus was discovered or before they even had a name for it.
But I’ve been able to survive because I’ve had quality medical care since the very beginning, because I was white, because I was born in the U.S., because I had private health insurance. And now, with the advent of combination therapy, I’ve rebounded.
I was quite sick. In 1991, I was forced onto a long-term disability retirement. But now I’m quite healthy because I’ve responded well to the treatments that people in the U.S. can get that help us live long, productive lives.
Different situation in Uganda
RAY SUAREZ: Noerine Kaleeba, you're nodding your head as Eric Sawyer tells his story. The situation must be very different in Uganda.
NOERINE KALEEBA, Taso Uganda: The situation is different. It's getting better in Uganda, but I think one needs to highlight the ever-growing female face of the AIDS pandemic in sub-Saharan Africa; the increasing numbers of young women that are getting infected; the increasing numbers of young girls that are dropping out of school to take care of mom and dad, again, girls; the numbers of elderly women that are having to care in their homes, and support, and provide, and becoming heads of households in their old age.
But also one needs to say thanks to activism. And as, for me, it's a special privilege to share this platform with you, Eric Sawyer, because you, like others in the Northern Hemisphere, have led the voice that these drugs, these new developments that science is offering us, should be equitable, accessible throughout the world.
And for me, as a survivor who lost my husband to AIDS at a time when all these advances were not known, it's a joy to see what a difference these have made in the lives of those that have been able to access it.
It's a joy also to see that, even in Africa, positive people are taking the front line on prevention, on leading, on programs to access care for those that don't have access at the moment.
RAY SUAREZ: Did Uganda take a while to even realize as a nation what was happening to it, as many countries in that region struggled with 10, 20, 30 percent of its adult population HIV-positive?
NOERINE KALEEBA: Sadly, Uganda, like any other country, also experienced its, say, period of denial. But, for us, I think the positive news that the period of denial was very short.
But that period between the first case of AIDS being detected in Uganda and the time when the AIDS programs were put in place also cost us a lot, because it was during that period that people like my husband were infected.
I know today that, if we had taken early steps to address AIDS, many lives could have been spared.
Scientific progress of AIDS
RAY SUAREZ: Well, Dr. Fauci, we've gotten pieces of the story so far, sub-Saharan countries struggling to cope, Eric Sawyer talking about a time when there was no social safety net, no coping mechanism for people suffering with this disease.
As a scientist, what do we know that we needed to know, as look at it? And what do we not know yet?
DR. ANTHONY FAUCI, Director, National Institute of Allergy and Infection Diseases: Well, the progress scientifically that has been made has just been, in many respects, breathtaking, from the time the first cases were identified in June and made known to the public in June of '81 until now.
If you look in terms of understanding the virus, of the development of drugs, that we now have more than 20 FDA-licensed drugs that are the combinations of drugs that have allowed people like Eric now to be able to be where he is now, whereas if it had been in the early years and we never developed them, there would have been so many more deaths.
There was a study that just came out recently that estimated that the drugs, the combination of antiretroviral drugs accounted for about 3 million life years saved thus far, which is really extraordinary.
But, you know, the challenges still remain, Ray. It's not something that we can just say, "Wow, haven't we done wonderfully?" We have done very well scientifically.
The challenges remain particularly with regard to prevention, including the development of topical microbicides to allow women to be able to empower themselves to help to protect themselves and the vaccine, the elusive vaccine.
This virus is extraordinary and unprecedented in its ability to evade the immune system. And that's really the last Holy Grail, as people often say, of the scientific achievements, in addition to being able to have more drugs in the pipeline.
Now, having said that, it's very important to point out that, as we talk about 25 years of difficulties that we had and 25 years of accomplishments, that we have many challenges ahead.
We have challenges in this country, and we have challenges globally on the international level. We have people who should be on therapy who don't have therapy, and we know now that we can't -- at least with the drugs that are available -- eradicate HIV from the body, so that if you stop therapy in someone invariably, in almost every single person, the virus bounces right back.
So when you commit yourself to treatment for people, you have to maintain that treatment, which is going to provide extraordinary challenges, not only in this country -- because there are still people who don't have the opportunity to get the kinds of drugs they need -- but particularly in developing nations, as we continue to have more infections and more infections.
So you've got to continue to treat the people who are infected and on therapy. And there are far fewer than we need to do, particularly in countries in sub-Saharan Africa. But we need to look ahead at the future of: How are we going to take care of these people in the long run?
Prevention harder with less danger?
RAY SUAREZ: Dr. el-Sadr, is the prevention message harder to hear in a society where AIDS is no longer seen as an automatic death sentence? Does it create a frustrating challenge for you, working in a large urban area, when you've got at-risk populations that now don't think they're automatically going to die if they do acquire HIV?
DR. WAFAA EL-SADR: That certainly is a challenge that, unfortunately, the majority of people with HIV don't even know that they're HIV-infected.
We know from some studies that, with the advent of these effective treatments and change in perception about the lethality or the danger of HIV, that some people have been lulled into probably more high-risk behaviors and probably also not taking care and protecting themselves from HIV infection.
Nonetheless, I think that we must continue with our efforts to expand treatment and to make the lives of people with HIV better, while at the same time trying to fine tune our prevention messages to find new ways of preventing transmission of HIV, as Dr. Fauci was mentioning, and also to work with populations that are particularly at risk for HIV.
We know that women, for example, in this country, particularly African-American women, are particularly at risk. Similarly, young, gay men of color are also at substantial risk in our communities, in our cities. These are populations that we must work with very closely in order to protect them from acquiring HIV.
RAY SUAREZ: Well, I'd like to finish....
DR. WAFAA EL-SADR: Now, on a global perspective, clearly the issue of the vulnerability of women is of paramount importance. And empowering women to be able to protect themselves and to find prevention tools that they can utilize is very, very important, if we're going to make a dent in prevention of further transmission of HIV.
Abstinence, Be faithful, Condoms
RAY SUAREZ: Wow. Two physicians have identified cutting down transmission as one of the most important tasks now. Let me get two quick, final observations, first from Noerine, and then from Eric, on how that can be done in 2006?
NOERINE KALEEBA: In 2006, I think the most important step that needs to be taken is leadership and clear messages. I am very concerned at the growing fundamentalistic tendencies that are beginning to pluralize the messages that young people are getting. And I'm particularly focusing on the issue of the abstinence-only campaigns.
Abstinence-only campaigns are threatening to crumble whatever we have built in the area of prevention, because young people have to be clearly told, "Yes, abstinence is good," but they have to be told how to access condoms. They have to be given skills of negotiating how to use condoms, so the ABC campaign is very important, but ABC together, not abstinence-only.
RAY SUAREZ: Abstinence, be faithful, and use condoms. A final observation, Eric Sawyer?
ERIC SAWYER: Well, I think, in follow-up to your question about misconceptions about how effective these treatments are and how that affects prevention, we need to get a message out that the therapy that people like I am on is not just one pill that you take like a vitamin in the morning and everything is fine, and therefore you don't have to worry about having HIV.
HIV is still a fatal disease. And even though people like myself are doing quite well, I take more than 20 pills a day with really debilitating side effects.
I've had to have my hip replaced because I developed a avascular necrosis. The blood supply to my right hip died as a side effect of my medications, and my hip literally was dying in my body and had to be replaced.
So AIDS is no picnic. It's not an easily manageable disease. You can't take one pill to save your life, and it's something that everyone should be doing everything they can to prevent it from infecting themselves or one of their loved ones.
And we should also be doing everything we can to make universal treatment available all around the globe. It's really morally unfair that someone like myself can live for more than two decades with HIV simply because I have access to expensive medications.
Every life on this planet has equal value; every life matters. And we should be doing everything we can to stop needless deaths that could be saved if we just gave people universal, equal access to medications.