Monday, April 6, 2009

Gorman Talk on Health and Human Rights

As promised, here is my talk on health and human rights, which I gave this past Friday at the GlobeMed Global Health Summit at Northwestern University in Evanston, Il. I met a lot of bright, enthusiastic students at the event and learned a thing or two myself. Thanks to Jon, Divya, Hannah, Victor and others for inviting me and organizing everything.

"Health and Human Rights: One Journalist’s Perspective"
By Christine Gorman

GlobeMed Global Health Summit
Keynote Address

Friday, April 3, 2009
Northwestern University
Evanston, Illinois


I would like to thank GlobeMed and the other sponsors at Northwestern University for inviting me to this Summit today. In keeping with the theme of the conference, I have taken as the title to my talk “Health and Human Rights: One Journalist’s Perspective.”

My talk today has three parts. I want to tell you a story, share some observations and finally issue a warning. The story comes from the 1980s, from the first few years of the AIDS epidemic in the United States. The observations are my own and the warning, yes, about the warning. Well, I’ll leave that to the end.

The story takes place in 1987. The two main characters are Archie Harrison, a 32-year-old gay man, and myself, a still fairly new, young health reporter for TIME Magazine.

First, I need to set the stage for you a bit.

In 1987, the AIDS epidemic was officially six years old. That summer, the government reported that 40,000 people in the U.S. had so far developed AIDS. And of those 40,000 people with AIDS, more than 23,000—or nearly 60%—had died.

We didn’t know it at the time but 1987 was the beginning of a turning point. The amount of stigma and panic that permeated the earliest days was beginning, just beginning, after extraordinary effort and struggle, to subside. President Reagan spoke publicly about AIDS for the first time, in a speech at a fund-raising dinner. The Food and Drug Administration approved a new drug—called AZT—that prolonged life for a while. But the price was incredibly high—about $8000 for a year’s supply of capsules.

Many people did not have insurance and could not otherwise afford the medication.

Here was hope—after so few years packed with far too many funerals. But it was hope that came at a price tag that put it well out of reach.

The rage was palpable. I attended the legendary meeting in Greenwich Village in which playwright Larry Kramer told the assembled room that two-thirds of them would be dead in five years if they didn’t “Act Up.” They quickly organized a die-in on Wall Street to protest the high prices. That was just the beginning. I sometimes wonder how much more they might have done with Twitter or SMS messages or even cell phones.

As part of TIME’s ongoing coverage of the news, I made contact with Archie Harrison, who was 32, and had just finished a clinical trial with AZT. Archie had responded well to the drug. Our first contact was on the telephone. I got the quote I needed for the article, but there was this extraordinary quality, this sense of connection that came through in our conversation.

I decided that I wanted to meet Archie in person and so I set up a follow-up interview.

We met in the home that Archie shared with his partner in the West 50s of Manhattan. There are some interviews, some conversations you have as a journalist that just stand out—and that you know you will take with you the rest of your life. My conversation that afternoon with Archie was one of them.

For a short while, the masks of politeness and self-protection and the pressure of everyday busyness that keep us separated from each other fell away, at least a little.

I had recently lost both my grandmothers, with whom I had been particularly close. People my own age were dying in unprecedented numbers around me in New York City. Having grown up in the Antibiotic Age, that wasn’t something that I had ever expected to happen.

Before I knew it, I was asking Archie an incredibly direct and admittedly na├»ve question. “What’s it like to know that you are going to die?” I asked.

He paused a second and must have decided that I was sincere. “I know I’m going to die,” he said. “Just as I know that you’re going to die.”

In truth, I don’t remember what he said right after that because I was so surprised.

“What? I’m going to die? But I don’t have AIDS. How can you say that I am going to die?” Honest to goodness, although it embarrasses me to admit it, those were the first thoughts racing through my head.

Did I mention that I was very young?

But you see what Archie did—don’t you? He drew a circle that included me. He didn’t let me forget that we share the same human condition—a condition that includes illness and death.

I had asked Archie a very specific question—about his own mortality—and he answered with a deeper truth, one that was universal.

I had asked a question that assumed—without my even being aware of it—that we lived in two different circles. And he gave me an answer that showed me where the boundaries really stood.

That is where I believe we must look for the connection between health and human rights. In that bedrock of our common humanity.

And yet, so often, the language and the arguments that I hear about health as a human right sound to my ear as if they are not about the common human condition at all. Too often the arguments smack of noblesse oblige. That the human right to basic health care is something that one group with an abundance of rights is willing to bestow on the poor and the lame. Not because they are equal but precisely because they are different.

This may seem like a subtle point but we ignore it at our own peril.

A hundred years ago, Christian missionaries spread across the globe to bring the “Good News” to the heathen masses. They knew that what they were doing was right—just as those who believe in health as a human right are convinced that their cause is just.

You have got to admit, something in us—at least some of us—needs to save the world.

But until we get it, until we get that it is we ourselves who are the ones who need those rights, I think we are likely to miss the boat and compromise the dream.

Have you ever noticed how often the talk of human rights sounds like preaching to the converted? Even the language, the phrase—“human rights”—depends on an international legal framework that may resonate in the groves of academia or NGO-land but that, quite frankly, doesn’t motivate most of the world.

I say this not to stop the conversation but to broaden it.

How do you translate the goals of universal access to health care in language that resonates with everyone from the ordinary Muslim laborer to the anti-abortion activist to the libertarian atheist?

Doesn’t this demand many phrases and many languages and many partners in conversation—particularly among those who are not yet convinced?

When I was looking over the list of participants at the GlobeMed Summit, I was glad to see a few representatives from the religious world—namely the Reverend Dan Dale of Wellington Avenue United Church of Christ and John Neafsey, a clinical psychologist and senior lecturer in the department of theology at Loyola. It is probably not that hard for most human rights activists to find common points of understanding with Dale’s and Neafsy’s social justice theology.

But I challenge you to find and make contact as well with those thinkers and believers of a more conservative brand of religion—such as those Christians whose focus on sin and opposition to condoms so often drive the rest of us to distraction.

Make sure you use language and engage in conversations that allow you to cast a wide net. Reach out to folks who are more genuinely motivated by an appeal to the Bible, the Koran or the Hindu examples of Rama and Sita than to the Universal Declaration of Human Rights.

Yes, there is a risk of unsatisfactory compromises and visions diluted by weak coalitions. Yes, you will find people who are not at all interested in engaging in conversation, only in shutting you down.

But if you don’t discover that circle in which you and the other both exist, then health as a human right becomes just another pretty ideal that you can feel really good about holding but that doesn’t make a difference in the lives of real people.

Finally, don’t be so GLOBAL in your focus on GLOBAL HEALTH that you lose sight of what is going on here in the U.S.

For decades, access to health care in the U.S. has been a group privilege—won by right of hard work and a prosperous employer. Follow the rules and you will reap the benefits. And, after all, don’t we deserve those rewards?

But the bargain is changing—isn’t it? Hard work and a college degree are no longer guarantees.

That has opened a few more eyes. It has taken the incredible cataclysmic forces of our current financial crisis to draw the circle wider, to see that we can no longer maintain our distance. Much to our surprise, we’re there, too, inside a desperate circle.

The upheaval has not yet been great enough for the majority of the middle class to throw in its lot with the poor, but, who knows, that may yet occur. People in a position to change the system don’t really think about doing so until the system stops working for them.

So much for the story and for my observations.

Now for the warning. For years, global health visionaries like Jim Kim and Paul Farmer have talked about AIDS as the wedge issue—the tool for mobilizing people from all walks of life around access to healthcare.

As a wedge issue, AIDS works better than some others—like malaria—because it crosses so many economic lines. You don’t have to work so hard at drawing the circle—at getting people to see themselves in the circle.

But I fear that window of opportunity is drawing to a close. As AIDS increasingly becomes a disease of the poor, its power to rally people from all walks of life around access to health care diminishes.

It’s human nature. Once I get my treatment, then I’m not in the same boat as you are. Once my husband, brother, lover, wife, sister, mother, father, son, daughter, best friend gets treatment, the lines of the circle begin to disappear.

If you don’t believe me, just think for a bit about tuberculosis. For centuries it afflicted rich and poor alike—okay maybe more poor people than rich ones. But still it afflicted enough folks in the corridors of power to finance the many sanitoria of Switzerland.

And then along comes streptomycin, which--along with better food and living conditions--does such a wonderful job that the sanitoria have to convert themselves into ski resorts or risk going out of business altogether.

In just a few decades tuberculosis becomes so completely identified with the poor that there is no market pressure to develop new medications beyond the first handful that scored the greatest success—albeit over a treatment course of many months.

No one now would ever think of using TB—or the fear of TB or sympathy about TB—as the wedge issue for folks from all walks of life to rally around access to effective health care.

How much longer until our perceptions of AIDS fall into the same pattern? It was recently reported that 3% of the residents of Washington, D.C. have HIV--a rate that is now higher than New York City's or San Francisco's. Yes, there was news coverage of the study but not to the extent there would have been 20 years ago.

So, that’s my warning: as wedge issues go, AIDS may have opened the door, but it cannot keep the door open forever.

The struggle to recognize health as a human right is about what is fair in a world that is demonstrably unfair, in which progress is never guaranteed and even the best of intentions can, and far too regularly actually do, prove harmful.

And yet . . . and yet . . . the words of the late Jonathan Mann, which you have quoted in the conference schedule, still ring true. Mann said, and I quote, “People say there is no use trying to change the world. But if we don’t try, will it change?”

Thank you very much.

4 comments:

beth fredrick said...

This is a very powerful and challenging speech. Thank you Christine for asking more of all of us.

Christine Gorman said...

Thanks, Beth. I hope it helps.

Larry said...

Wow. This is a really strong first person speech. Thanks.
Your point about not missing the local for the global is very important. And so too is the challenge to translate "global health" and "human rights" into language that resonates on the street. And your insight about drawing the circle wide is very touching in a positive and non-sentimental way.
Thank you
Larry

andymel said...

Well done, Christine. Your thoughtful and insightful views on health issues are as provocative as ever. I am sure this presentation provoked a lot of great discussion.

I look forward to being in touch.

Best - Andy