By Mara Gordon
(Eisenberg Literary Journalism Fellowship, Center for Programs in Contemporary Writing, 2006-2007)
Scott Kaplan emerges from the University of Pennsylvania Law School. It's the first big snow storm of the year and he's wearing nothing over a sweater. He hunches as he crosses the street, a slim figure trudging through the slush.
We meet at a coffee shop right across from the Law School library, and as he sits down, he tells me how pleased he is that a reporter wants to meet with him. His organization has a great cause, and he's working on making its PR a little better - talking to a real reporter will be good practice, he says, grasping his coffee with both hands. "Part of my job is trying to come up with sound bites," he says, smiling. Kaplan seems comfortable talking to me. Maybe his upper middle class upbringing in Boston gives him few reasons to distrust; maybe it's faith in his cause. Kaplan is an unassuming activist, instantly likeable. He talks fast, leaning forward in his chair. He tells me about his girlfriend living in Paris and what a bitch his first-year law exams are. He seems like a regular guy, though he just may have a shot at changing his world.
Kaplan's modesty reflects the personality of the group he represents. He is the nationwide student spokesman for Universities Allied for Essential Medicines, an organization with a single mission: getting more medicine to poor people in poor countries. It is only one of an alphabet soup of activist associations trying to solve this problem. There's Bill Gates and Bill Clinton, both with foundations offering up funding to clinics in Thailand and Ghana. There's Bono, of course, with his star power. There are international bureaucracies such as the World Health Organization and the United Nations. There are PhDs experimenting on rats in labs, trying to find affordable cures to intractable diseases.
Universities Allied for Essential Medicines was born out of a small group of medical students at Yale in 2001, future MDs who wanted to cheapen the cost of an AIDS treatment drug known as d4t. The anecdote is a success story that current UAEM members tell again and again, trying to rally its members. Those founding students, the story goes, went straight to the source: the Yale scientists who developed d4t, a pricy medicine that sold in the United States for $1,600 per patient each year. The students campaigned relentlessly, and Yale was able to renegotiate its contract with the pharmaceutical company that sells d4t. A generic version is now offered at substantially lower prices in some developing nations.
What emerged from New Haven was a group of graduate students with their idealism intact. As the next generation of physicians, they believe they have an obligation to improve the health of the world's people. For the students in UAEM, the way to tackle such immense questions is to go after what they know best: research universities themselves.
"This is an area that needs to be addressed," Kaplan says. "The disparity has become so striking. With advances in medical technology, we have a legitimate expectation that a child can live to be 80 or more years. And that would be normal. My grandfather had nine brothers and sisters, not counting the four who didn't live through childhood. In that era, there's wasn't an expectation that every person would live a long life. This is now something that we take for granted and that everyone should take for granted."
Kaplan doesn't view what he calls "global inequality" as controversial. Everyone wants to fight AIDS and malaria and tuberculosis - Hilary Clinton and George W. Bush, nations developed and developing, conservatives and latte-drinking Massachusetts liberals like Kaplan himself. Of course, there are some hang-ups. Should U.S. dollars go to AIDS prevention clinics in Africa that provide abortions? What about church-affiliated missionary hospitals? The basic goal, however, is something that anyone living in the first world can agree on, Kaplan contends.
Kaplan likes to throw out statistics. His are compelling, and he recites them with a certain urgency: 39 million people worldwide were living with HIV or AIDS in 2006. 24.5 million of them were in sub-Saharan Africa. Thirty-three percent of adults in Swaziland have AIDS; 24 in Botswana. Over 100,000 children were orphaned by AIDS in Congo last year. Mozambique, 500,000. the world doesn't have a cure to AIDS yet, but the first world has drugs that can ease the burden of this epidemic. But people in these impoverished nations cannot afford the same treatments that Americans and Western Europeans can. The numbers are so staggering that it's easy to tune them out.
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In the years since the flagship Yale chapter got its start, UAEM has been popping up at universities across the country, generally at research-heavy places like Berkeley and Emory and Cornell. Most have large medical institutions that require millions of grant dollars to operate. It is in the labs of these universities that researchers develop many "essential medicines," drugs so fundamental that the World Health Organization says every country in the world should possess them. Most essential medicines are treatments for HIV/AIDS, malaria, or tuberculosis, the three that global health experts say are the biggest worldwide threats.
There are UAEM chapters at twenty-five of these research institutions, all led by students. The national advisory board is planning on hiring a small professional staff this year to provide some continuity as student leaders graduate, but by and large UAEM's mission is student-driven. They host speakers and show films, hold conferences and sign petitions. They are planning a national Day of Action later this month in the hope of generating some support - and media coverage - for the cause.
The group at the University of the Pennsylvania is one of the more potent. Scott Kaplan and the chapter's president, first-year medical student Anna Weiss, both are leaders in the national movement. Kaplan says there are some twenty dedicated members in the Penn chapter, but countless more on its listserv and who attend group events. The chapter was largely responsible for the Philadelphia Consensus Statement, a petition that hundreds of students and academics and even some big-name activists and Nobel Prize winners signed last fall.
"We believe that access to medical care and treatment is a basic human right," the Consensus Statement proclaims. "We believe that universities have an opportunity and a responsibility to take care in these solutions." Jeffrey Sachs, the author of The End of Poverty, is on the list, so is Harvard physician Paul Farmer, who started a clinic in Haiti and is an icon in the international HIV prevention movement. Their language is grandiose and confident.
UAEM faces a particular challenge, however, and it's the one Kaplan referred to the first time we met: getting the word out. His group has no desire to stage protests, and few students on campus have ever heard of his organization's acronym. The Penn chapter, as are most around the country, is populated mostly with quiet medical and law students who prefer to work within their very specific niches rather than make dramatic gestures.
"We're not going to go to a national HIV conference and throw blood on someone," Kaplan tells me , forcefully. "It's not about taking over administration buildings. It's not about setting bonfires. To me, the activism is about reconsidering the status quo. It's just not effective to do that through violent, hostile means."
What is the strategy, then? Well, it's a mouthful of technical terms. Even Kaplan has a hard time explaining it at first.
"We're looking at where universities are filing for patent protection, how it's being developed and marketed ..." Kaplan trails off, and laughs. "It's definitely institutional."
In the simplest terms, UAEM wants to change the way universities negotiate with pharmaceutical companies. When an academic researcher develops a new drug, he will usually file for a patent to protect his intellectual property. Universities then license those patents to pharmaceutical companies - sometimes biotech companies or other businesses, depending on exactly what's being patented - then test, market and sell the drug. Universities get paid in return.
It's that specific licensing cog in the massive, grinding wheel of an academic health center that UAEM seeks to target. If research universities band together, the group argues, they can write their cost and distribution demands into licensing contracts. If one university calls for a change, the pharmaceuticals will go to another. But if they all work together, universities can refuse to license any new, and potentially lucrative, drug -- unless pharmaceutical companies promise to market them at cost in developing countries.
UAEM proposes something called an "equitable access license," which would essentially force first world businesses to sell companies in the developing world the right to distribute generic versions of their drugs. UAEM is banking on the fact that pharmaceutical companies need academic institutions. If universities join together, in effect, they might be able to use this leverage to the group's advantage.
The Penn UAEM chapter sees itself as a model of 21st century activism. Kaplan is genuinely convinced that even pharmaceutical companies won't have to suffer if universities adopt equitable access licensing - they'd be selling drugs more cheaply, yes, but in markets that are now mostly untapped.
I'm "realizing that not everyone is an expert or wants to be an expert in licensing," Kaplan says as he contemplates their modus operandi. He tries out another sound bite. "We need to make people feel that they will be held accountable for the decisions they make. It's not necessarily picketing them until they make the right decision. It's giving them a very good incentive to make the right decision."
Their revolution is a quiet one, one fraught with self-imposed restraint and decorum. They are change agents, but they are also future doctors and lawyers with future careers to consider. They want to rally the troops, but not too loudly.
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"The world's going to be all right if the people like the ones I met today will be taking on its problems," Paul Farmer proclaims to a crowd of hundreds at Penn on a sunny day in March. "The world's going to be okay."
Farmer is on campus for the annual dean's lecture, and he is speaking about building an interdisciplinary movement to solve the global AIDS crisis. His organization, Partners in Health, got its start as an HIV treatment clinic in Haiti; it's now expanded to six countries worldwide. The book Mountains Beyond Mountains profiles Farmer's work. Farmer is the biggest of all big names to members of UAEM. Not quite a Bono or an Angelina Jolie, but the kind of physician they one day hope to be. They have been preparing for his visit for weeks now, and as he speaks, they look on with rapt attention. His presence - and the turnout - is a major victory for UAEM's cause.
A thin man in a too-big suit, Farmer he pushes up his glasses when they slide down his nose. He tells doctor jokes and laughs at photos of himself in which his face is the only white one in a sea of Haitian children. He is jovial, and makes the global health crisis seem almost easy to solve.
Everyone's who's anyone at the university is here to listen to Farmer. Deans, faculty with endowed chairs, students cram into the campus's biggest auditorium. Some must watch live video feeds from adjacent rooms. UAEM leaders are ecstastic: the big players at Penn are listening.
"If, say, I'm a rural Haitian woman, it's really not cost effective to treat me," Farmer says, his facetious explanation for how pharmaceutical companies calculate cost/benefit analyses. Poor people's medicines tend to fall in the "cost" category. "If we believe in rights at all, the notions of rights - can we offer rights to people living in poverty? I think the answer is no, unless we work together."
Ten years ago, Farmer says, he never would have been invited to speak at a lecture like this one, where regal floral displays adorn the stage and he is awarded a University of Pennsylvania tie for his trouble. Today, it's not just a problem that 500,000 Americans are living with AIDS. It's that there are millions more worldwide, and have none of the financial luxuries Americans do.
Towards the end of his lecture, Farmer gets in a plug for UAEM. He tells the crowd that he has signed the Philadelphia Consensus Statement, and urges everyone else to do the same. Where Kaplan and his friends might get tongue-tied with terminology, Farmer effortlessly connects UAEM's mission to the broader questions of poverty and healthcare.
"There are just so many assets that we have in the American research university," he says. "I know a lot of scientists, people who come to me, who say, 'I want to do this work and I want to make sure that it means something for poor people.' That's the general purpose behind this alliance."
Attendees pour out of the auditorium and into the late afternoon light. They are elated. Farmer has rallied them, and UAEM leaders want to take advantage of the energy. Club members scatter to hand out fliers advertising their group, imploring people who sign the Philadelphia Consensus Statement. Anna Weiss, the chapter president, has a breathless look, as if she and the group are one step closer to success.
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As with any activist cause, there are those who would argue. At Penn, the dissent is coming from some of the very people UAEM needs on its side.
I meet Paul Offit in his office, high up in a research building at the Children's Hospital of Philadelphia. The space is large, his desk clean, awards line the bookshelves and the walls. Offit is a big name at CHOP, a physician who gets a cushy office because his research has made the hospital quite bit of money. He is a neat man, in his crisp khakis, his children smiling out from picture frames in his office. CHOP and Penn Medicine, where Offit is also a faculty member, have good relationships with pharmaceutical companies, and it's doctors like him who keep those relationships healthy. He is also the type of researcher that may hold the key to better global health, according to UAEM.
Offit is editing the manuscript of his latest book when I come in, poring over footnotes that the publisher has somehow mislabeled. "I don't know how they messed this up," he says, as he gestures for me to have a seat. The book is called Vaccinated: One Man's Quest to Defeat the World's Deadliest Diseases, about a researcher at Merck who developed the measles and mumps vaccines.
"I'm making the case that he is the father of modern vaccines," Offit tells me. "I thought he should have won the Nobel Prize." The book is close to home for Offit: the rotavirus vaccine he developed is also sold by Merck, and he maintains many ties to the company. The vaccine prevents against the severe diarrhea that kills hundreds of thousands of children each year. He started working on the drug in the early 1990s, with a team of researchers he counts among his closest friends. In the early days, they never realized they would stumble upon such a goldmine, Offit tells me.
Now that his vaccine - marketed as Rotateq and approved last year - is practically mandatory for young children, Offit spends his time studying the history of his field, writing books about legendary scientists. He appears on cable news shows defending vaccination; he publishes fliers in multiple languages explaining to anxious parents why it isn't proven vaccines cause autism. He is a crusader for vaccines, and by extension, the companies that make them.
"Maybe it's just the culture of the times. We perceive industry as being negatively influential," Offit says. He picks up a Rotateq notepad from his desk, and gestures to an imaginary boardroom somewhere in the building. "Most of the people in that room see industry as evil. The lunches, the pens, the pads."
Offit knows some of the students involved in Penn's UAEM chapter, and he says he admires their verve, even their mission. But he argues that their strategy just won't work.
"Here's what I don't get," Offit says, after I describe the changes they would like to make in licensing deals. "Licensing and patents don't have anything to do with it. You're never going to be able to adjudicate that in a contract."
Offit is hardly a money hungry executive. If anything, he's just a guy who loves to putter around with his research - he hands me a pile of Rotateq paraphernalia and books and DVDs to take home with me. He smiles ruefully when he talks about the good old days in the lab, before it closed when the vaccine got off the ground. He also wants to make sure it gets to the neediest children - but he thinks charity dollars are the way to do it.
Rotateq is undergoing clinical trials around the world thanks -- thanks to money donated by the Gates Foundation, which set up the Global Fund for Children's Vaccines, part of the Global Alliance for Vaccines and Immunization. Rotateq is one of many vaccines slowly but surely making it to the world's most impoverished children.
And Merck itself isproud of its own efforts. Mark Feinburg, a Merck doctor who develops the company's policy for worldwide vaccine distribution, says that his company is going above and beyond the call of duty.
"Our policy is to provide Rotateq at a price at which there's no profit," Feinburg says. He wouldn't tell me how cheaply they sell Rotateq to the Global Fund for Children's Vaccines, but insisted there were tens of millions of doses going to infants in nine poor countries as part of these clinical trials.
"Being able to provide the vaccine at a price commensurate with its value - even in developed countries - is an important part of the incentive to make the vaccine," Feinburg says, matter-of-factly. "But we feel like we have a global, social responsibility. Ideally, you'd like to be able to serve both worlds."
Those third party foundation dollars - the money that brings Rotateq to the developing world -are the only way to get medicine to those who truly need it, Offit and his colleagues at Merck believe. Researchers research, and companies sell products. Charity is the only way to get those products to people who cannot afford them.
"They're not going to lose money on the vaccine. They're not going to sell it for 40 cents a dose, nor should they be expected to," Offit says. "Pharmaceuticals are monolithic structures, but they are made up of people." He tells stories of Merck executives growing teary-eyed as they show slides of newly vaccinated children, overwhelmed by the company's ability to do good.
"My experiences with pharmaceutical companies have all been good, " he says.
Offit's point-of-view underscores how research universities operate. No matter how brilliant their scientists, universities aren't in the business of producing and marketing drugs. So they license their intellectual property, leaving the marketing strategies and pricing to pharmaceutical companies. If activists seriously want change, they should pick another fight.
Kaplan says that researchers like Offit are merely afraid to challenge the status quo. "They're researchers. They're not public health policy specialists. I think there will always be institutional inertia against change."
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It's not likely equitable access licensing will solve all the world's health problems, but it may be feasible. There are teams of lawyers and ethicists throughout academia studying this very question: could it ever work? A Penn bioethicist named Jon Merz, a lawyer himself, says yes.
"Pharmaceutical companies are concerned about leakage," he says, concerned that other companies may get hold of their formulas if they license out to generic manufacturers. "They're also trying to maintain their high profits. And anything that looks like it's going to undermine that, well, they don't want it. The model is possible - and not necessarily harmful to pharmaceutical companies - it's just that universities have to take the first step.
Universities have a long history of making money for themselves - and their scientists - through drug companies. Of about $800 million that pays for research at Penn, $50 million is from pharmaceutical companies. Other major research institutions in the United States get just that much, if not more. Penn Medical School administrators are unabashed about trying to move that number up, and a man named Terry Fadem is at at the forefront of that effort.
"The leadership of the Medical School has tended to be very future oriented," Fadem says, sitting in his office deep inside a mazelike building on Penn's campus. Future oriented, to Terry Fadem, means tilting towards what pharmaceutical companies want. So Fadem cultivates alliances between industry and the university. It's hard to imagine, sitting in a leather seat in Fadem's cushy office, that Kaplan and his friends can have any effect on what he does. His job is based on further ties between big funding sources and the school. $500 million comes to Penn every year from the National Institutes of Health, the arm of the federal government that doles out taxpayer money for medical research. But fewer and fewer NIH dollars are going to research as the years tick by. The institutes' budget has been steadily decreasing since the 1990s, and just a few months ago President Bush announced it would be cut by an additional 2 percent for the 2008 fiscal year.
So Fadem's office must think outside the box. Part of that involves enticing businesses to pay for research in the hope they will get a lucrative drug in return.
Fadem is a bit defensive. He knows what kind of reputation pharmaceutical companies have. When I first meet him, he hands me a copy of a small book called On Bullshit, a gift he keeps by the dozen to hand out on occasions just like this one.
"You'll appreciate it in your line of work," he tells me. He's joking, but there's a message intended. The American press has leaped upon every pharmaceutical scandal it can get its hands on. Most people think pharmaceutical companies are out to make medicines as inaccessible as possible. Terry Fadem believes companies can help create the ones that save lives.
"The NIH has a specific interest and they create the opportunity for faculty to compete for money. Companies have a much different take. They'd like a product at the end of the research," he says.
Science in the 21st century is no longer a life of scholarly leisure, the life of an apple dropping on Isaac Newton's head or of Galileo gazing up into the heavens. It is more and more about making the latest drug - one that companies sell to make money, not to save the world.
The day in, day out, relentless pursuit of a marketable medicine is deeply ingrained in scientists' psyches, and Fadem's faith in the marketplace is unwavering. "The profit motive is what's going to drive people," he says, shrugging his slim shoulders.
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It's a Friday afternoon, and UAEM members are itching for the weekend. To entice her members to a sporadic club meeting, Anna Weiss has followed the first rule of college activism: provide free food. If you don't, nobody will show up , no matter how noble the cause.
Weiss's choice today is chocolate covered pretzels, which she unwraps as she adjusts a brightly colored scarf around her neck. She passes them around a boardroom table in Penn's Graduate Student Center. After one young woman spills the pretzels across her lap, she laughs, then looks at me pleadingly. "Please don't write about that," she says.
The members of the club are a little bit uncomfortable with a reporter present. When one student makes a snide comment about Penn's president, Weiss reacts with a jolt, and tells me it's off the record. Scott Kaplan makes light of her concern. "There are some $20 bills waiting for you on the way out!"
But as Weiss addresses the group of ten or so students, she develops some confidence. Weiss mentions that Steven Fluharty, the vice provost for research at Penn, is interested in their cause, and is willing to bring it up with his counterparts from other research universities. These administrators may not be ready to overhaul the system, but they want to put licensing essential medicines on the table. They are considering some kind of symposium in the coming months.
"It has fallen on Penn and us, literally sitting in this room, to figure out how that's going to happen," Weiss says. "Shoot for the moon, and let them say we've aimed too high. I'd rather start with the big names than underestimate ourselves."
Penn's UAEM has a long way to go. The organization is trying to chip away at a bureaucracy so ingrained in the university that, to many faculty members, it feels like an attack on the school's very structure. But for all their jargon and aversion to outright protest, these activists are building a new model. They are pragmatic and idealistic. They have a concrete solution for a growing injustice. And just as the current generation of physicians learned to work in an increasingly corporate world, it just may turn out that their successors might find a way to restore its conscience.