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Tucker Fellowship Paper
Jennifer Gapinski
Physicians for Human Rights
Boston, Massachusetts
June 2003
Out the door of my four-story brownstone, I take a right and join the other walkers on Columbus Street. There are a few with dogs, some kids waiting for a school bus, and the rest of us, headed downtown to sky scraping office buildings despite the pull of a sunny spring day. Past the flowering dogwoods of the Back Bay, the street turns more commercial—a Starbucks, a T station, the John Hancock tower reflecting blue sky and a few puffy clouds in its glass windows. Before long I’m passing the Public Garden where the Swan Boats are already filling with tourists and entering the Common, its wide assortment of people and activities always astounding me. College students with nose rings, an old homeless man with a Dunkin Donuts cup, businessmen on cell phones, a woman from Chinatown hawking newspapers—they all gather on the Common, day after day, in a bustling routine of diversity and activity. Coffee in hand, I reach the seventh floor of 100 Boylston, the location of the main office of Physicians for Human Rights (PHR). I have a desk in the middle of a large room, between Juliet, an intern from Luxenburg, and Dr. Ken Fox, a Soros Fellow researching how Hip Hop can be used to convey health messages to adolescents. I look forward to the community at PHR—the morning hellos, the concerned conversations about news from Iraq, the "donuts in the kitchen" emails. Even as an intern I am fully embraced by this community and as soon as the daily analysis of the most recent Red Sox game is over, it’s to work for all of us.
Physicians for Human Rights is an organization based on the principle that human rights are essential for human health. Violations of human rights—torture, detention, or racial disparities in health care, for example—cause health problems in obvious ways. But beyond that, human rights are vital for ensuring health preventatively. An example of this is medical neutrality, like when a doctor is caring for a patient in a situation such as a prison, where the doctor’s employer may not want the patient to receive adequate treatment. The law of human rights acts here to give the patient the right to care and the doctor the right to practice despite this dual loyalty. The relationship between health and human rights is truly profound.
Article 25 of the United Nation’s (UN) Universal Declaration of Human Rights, adopted in 1948, gives every human being the right to health care, and this simple accord drives much of PHR’s work, along with the other 30 articles. UN Secretary General Kofi Annan said, "It is my aspiration that health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." It’s a tremendous goal but not something I had given much thought before this internship. In fact, my familiarity with human rights in general was cursory, and when I started I had to review the Declaration itself, posted with beautiful illustrations on PHR’s office wall. Now, I have a deep appreciation for this document and the importance of human rights. Human rights give human life meaning, and demonstrate what we, as people, value. The right to life. The right to freedom of movement, thought, consciousness, religion, opinion, and expression. The right to work, and the right to rest. Food, housing, clothing, medical care. Education. Cultural life. What would we be, as human beings, as a society, without these things? And if we agree they are very important things, then are they not the unassailable right of every person born on this earth? The implication of human rights is tremendous: they are things that define us, and that must be assured for every person. Not just people born in the developed world. Not just people living outside war zones. Every single person. That means when someone contracts AIDS in Namibia, they have the same right to adequate medical care as someone living in the United States. And if this right to health, this right to life, is not the same for these two people, then it is not a right, it is a privilege. What happens then? Privilege can be lost, and if the right to life is not everyone’s, then it is no one’s.
With this appreciation for human rights I saw how PHR plays the vital role of bringing them to the health arena. Founded in 1986, PHR investigates and exposes violations of human rights worldwide and works to stop them. The mission statement reads, "Because of their training, health professionals are uniquely qualified to play an important role in human rights investigation and documentation, and PHR has sent forensic and medical teams to dozens of countries to investigate human rights situations." I saw this mandate come to action during my internship, as we had several teams working in Iraq during and after the war. There was a forensic team working on mass grave sites, helping ensure that families had the right to the remains of their loved ones and that autopsy information was collected about these deaths by genocide. We had doctors examine released prisoners of war, from both sides, and interview them about their treatment during detention. There were also doctors surveying sanitation and health conditions in refugee camps. I saw these teams go out and got their cutting edge reports first hand—I feel I got a real picture of Iraq that many have not. I attended staff meetings where we struggled with how to put our information into action by working with the humanitarian community, and where we wondered how to challenge the Administration on their distinction between "stress and duress" and "torture." I also got to see our communications department issue press releases and public letters to key players, a window into the expansive world of the media. The complexity and direness of the situation in Iraq was not lost on me, and I feel our doctors will play a large role in shaping this history. During this fragile time for human rights I was in the middle of an organization stretching its resources to protect them. I learned as much seeing all of this happen around me as I did doing my actual work.
The PHR mission statement also says, "When organized under PHR’s leadership, health professionals can put pressure on governments that violate human rights. The grounding of their concerns in medical ethics and their recognized commitment to health render their voice uniquely powerful." Indeed, the main concern of medical professionals is human health, and this concern and neutrality gives them an important position in the human rights community as a powerful political force. While not all physicians have the capacity to be on the ground in Iraq, they can all use their voice to advocate for human health in other ways. Thinking about this role for health professionals was meaningful to me because my goal is to be a physician someday, and I learned a great deal about this job from PHR. I feel that advocacy is not just a role physicians can play, it is an obligation that comes with the job of protecting health, and I aspire to follow in the footsteps of the doctors I have seen fulfill this duty. As professionals who believe in health, the goal of doctors should be good health for all people, and I strongly feel that action in the political arena is key to making that happen.
The great importance of change in the political arena was not an automatic realization for me. In fact, at the start of my internship I struggled with not helping people directly, one-on-one, but then as time went on I saw that advocacy and large-scale action I was doing is just as important as direct service. People’s lives are changed for the better by their relationships with their health care providers, and that direct contact is imperative, but lives are also changed by large-scale action. Indeed, getting to the root of society’s problems often requires the sweeping changes and large financial commitments that governments provide. A physician using her expertise to advocate for a better health care system may save more lives in the long-term than the medications she prescribes. By pushing her government to protect the right to health worldwide through funding vaccinations she can prevent infection in more people than she could ever vaccinate personally. Of course the people giving the vaccination are still necessary, and that’s why both large- and small-scale action are essential to ensure health and human rights for all. During this internship my commitment to becoming a medical doctor was strengthened because I learned so much about the importance of this role, and I do want to be able to give the direct service, but I also know I will stay involved with the bigger picture, whether through public health or advocacy work, throughout my life as well. Both are important.
Also due to this connection between health, human rights, and politics, I learned more about government than I ever expected at PHR. I followed bills through the legislative process, I scheduled meetings with members of Congress, I analyzed why Republicans and Democrats acted certain ways. Even as someone more interested in the human genome than the Constitution, this didn’t seem irrelevant to me because I saw how related it all is, and this is one of the most important realizations I came away with at the end of the internship. Government is a fundamental part of our society and affects everyone and everything. We must remain guardians of our government, and therefore everyone should feel they can get involved to change things, daunting as that may seem. A wonderfully inspiring moment of the internship was responding to a letter from a man in Dorchester, written in broken English, about how PHR should get our government to do more about AIDS, because AIDS hurts so many people. I have no idea who he was or how he knew of PHR, but I love that he felt empowered to influence the government. He wrote a letter, just a small action, but it is the sum of people like him caring enough to push our government that creates the big changes. This kind of action can be so frustrating because the change can be so slow and hard to see, but it cannot be ignored.
The mission of PHR, to find violations of human rights and work to stop them, is reflected in its organization. There are two parts, the research component and the campaign and education component. They are connected, as the information found by research becomes cause for member education and campaigns for political action, but they do have different purposes. I worked on the campaign and education team, with the people who publicize human rights violations and work with doctors on advocacy. This section is currently composed of several projects. There’s the Asylum Network, which organizes volunteer doctors to examine people seeking asylum from torture and advocate for granting their asylum based on their physical and psychological status. There’s the Campaign to Ban Landmines, which shared a Nobel Peace Prize in 1997 for promoting an international treaty to ban the weapons that cost innumerable civilian lives. The Health and Justice for Youth Project advocates for elimination of the juvenile death penalty based on the developmental state of young people and also promotes better conditions and treatment in juvenile prisons. The student organizer works with PHR chapters at medical schools, teaching doctors-to-be about the issues that may shape their careers. And then there’s the Health Action AIDS Campaign, my home at PHR. The Health Action AIDS Campaign seeks to raise awareness about HIV/AIDS, provide current research about the epidemic, prevention, and treatment, and mobilize health professionals to encourage the Administration to support best medical practices in a comprehensive strategy to fight global AIDS. This is an amazing project, and after what I have been through I will carry the cause of ending global AIDS with me forever.
In addition to myself and Eileen, the Campaign’s director, PHR’s US Policy Director, the Director of Research, and the Member Outreach Director were also intimately involved with this Campaign. The small group of us worked together constantly and I got to interact with many people on our advisory board as well—the biggest names in the AIDS field, people who have been with the epidemic from the beginning. One staff member commented that it’s only because there are so few people working on AIDS that we know them all, but it was impressive to me. I met Deans of Medical and Public Health schools, researchers from Massachusetts General Hospital, and the Chair of the Harvard AIDS Institute. However, by far, the most inspiring person I met was Eric Sawyer, a gay man who has lived with HIV for almost 20 years, and a prominent AIDS activist. This man has seen his friends and partner die of AIDS, and though he remains healthy with medication, he knows that most people in this world are not so lucky, solely because of where they were born. He speaks passionately about AIDS as a human rights issue, and believes every infected person should have access to treatment. He has dedicated his life to this cause. He talks about government with passion, and I will always remember his criticism of the people working on AIDS in this Administration, and how paralyzed they seem in the face of the problem, with so many dying, and so many challenges to face. Eric says, "When we wanted to get to the moon, we didn’t hire the people who were saying it would cost too much, it’s too far away. We hired the people who said we’re gonna get there, damnit. That’s what we need for AIDS." As Eric points out, during the fourteenth century the world lacked the knowledge to end Black Plague, but we have the necessary tools for prevention and treatment of today’s plague—all we lack is the commitment.
Another amazing person I met working on the campaign is Dr. Paul Farmer, the director of the non-profit Partners in Health. He is acclaimed for bringing HIV therapy to the poor, rural nation of Haiti, and for proving that lives can be extended with proper treatment there, just as in the US. His patients have more energy, they’ve regained weight, and have gone back to work providing for their families. They are living longer and raising their children. He provides pregnant women with cutting-edge treatment that ensures their babies are not born with HIV, just as women in the US can receive. There are volumes of excuses for not funding access to medication for developing nations, about therapy being too expensive or too complex. One Congressman even asserted that people in Africa aren’t able to take medications because they can’t tell time. Dr. Farmer has proven them all wrong, and he has done it without expensive CD-4 count machines. He quotes one of his patients: "Taking two pills twice a day isn’t hard. Dying is hard." Dr. Farmer actually thinks it’s pathetic that his organization is applauded for being one of the largest bringing treatment to an impoverished area, because they treat only 400 patients daily. There are 41 million people infected with HIV.
Forty-one million people worldwide. 8,000 people dying every day. 17,000 new infections every 24 hours. My experience with AIDS previous to this was on a domestic level, working in the Massachusetts Department of Public Health, and though there are sad and harrowing stories here, it cannot compare to the situation in Southern Africa, or the situations developing in China and the former Soviet Union. Again, this is a case for the need for effective government, and the power of the people who pushed our government to recognize AIDS as more than a "gay man’s disease" and take action. The numbers, the statistics, cannot do justice to global AIDS. It is the biggest health crisis in human history. It is not an epidemic, it is a pandemic. One evening we watched a new AIDS documentary together, and only after seeing the faces could I see the real extent of this crisis. There are entire families torn apart, 20 million orphans. Communities where no one is left to farm the field and feed the people. By seeing the faces you see that the people injecting drugs are not courting the disease, they are trying to escape the desolation of poverty. You see that the woman whose husband is infected chooses not to use a condom over being beaten and thrown out in a society where she has no rights. You see that a 13-year-old girl selling sex for food cannot "just say no." You see kids having sex that have no idea that HIV even exists—they have never been educated otherwise. This is a disease that attacks the body’s defense system, an incredibly tragic and frightening death. The faces behind the statistics are more than powerful, and you realize it’s a human rights issue, because those same people could be treated in the US, if they were born into money. They may have been more educated, and women, in particular, would have more rights to protect themselves. The documentary interviews an African doctor, struggling to tell his patients there is nothing he can do for them if they cannot pay, and struggling to avoid the stigma of treating the infected. He says, "Do they [the US] really think they can leave us all to die, entire continents to die, entire peoples to die, and it will never affect them?" Unfortunately, given the scale of this epidemic, the US has done little, and that’s how it appears.
Knowing all of this, nothing I could do would seem sufficient, but I am proud of what I did do for the Health Action AIDS Campaign. When I first got to PHR our objective was pulling off a conference scheduled for two weeks hence—a conference teaching medical students about global AIDS, and then having them meet with their elected representatives to encourage them to support certain legislation. This conference was held in conjunction with Amnesty International, the American Medical Student Association, the International Federation of Medical Students, and Student Global AIDS Campaign. It was hard work for everybody, and as the leaders, we at PHR had a lot to do. Seeing the nitty-gritty details and planning it takes just to hold a conference to educate people was more evidence that large-scale action comes very slowly. I wrote and produced numerous materials for this conference: members of Congress’ voting histories; fact sheets on best practices like condom promotion, safe needle distribution, ways to stop transmission in medical settings (still a problem in much of the world), and multilateral aid; welcome letters and agendas; how to meet with an elected official, and more. I also scheduled meetings for the medical students with their Representatives and Senators—no small feat with 200 students coming from around the country, but an amazing lesson for me in how Congress can be accessible—you can simply call up, state your district, and get a meeting, at least with an aide. I helped draft the remarks of our speakers, which included a statement from Bono, of the band U2. The camaraderie during this time was unbelievable, with everyone staying late to do anything that needed doing, always with the ultimate goal in mind, which can be difficult. I didn’t get to attend the conference personally but it was, from all accounts, an amazing success, both inspirational and effective. It was the largest "lobbying" day ever held on global AIDS in Washington DC, and the image of medical students in their white coats speaking on the need for US action garnered coverage from CNN and C-SPAN. Some students wrote us that it changed the direction of their medical careers. After the conference, I spent a lot of time with the results of the meetings with Congress that students turned in. The chart I created on the member’s stances was distributed to the network of AIDS organizations in DC, and I hope it’s helping them still. I also sent follow-up letters to every office, with any requested information and action the member could take, such as a sign-on letter we created to the Chair of each house’s Foreign Relations Committee. In all of this correspondence, we were careful to remain respectful and make requests that we felt could be actually be granted. PHR’s activism isn’t radical and accusatory because we work to build relationships of respect and work for compromises. Sometimes this was difficult, like when we requested that 30% of US aid go through the UN, when we really wanted at least 50%, but I do feel pragmatism is important in these situations. It’s hard when you feel very passionately, but sometimes getting something done is better than nothing because you pushed too hard.
After the conference, I spent some time recruiting doctors to sign the Health Professionals’ Call to Action on HIV/AIDS, which has over 1,200 signatures. It was interesting to approach doctors in general practice, and get them to consider global health situations and the actions they could take. I was also very involved with creating a proposal to the Gates Foundation for a grant to send US nurses to Africa to work with nurses there because nurses carry much of the burden of treating AIDS patients without receiving much support. This was a difficult project because we felt American nurses could help combat the stigma associated with treating AIDS patients by demonstrating that professional, respected people do it in the US. We also hoped that US nurses would see situations first-hand and be inspired to continue to help, in ways that PHR wouldn’t have been able to do itself. However, African nurses are already very overburdened, and it was hard to know what we would actually have to tell them: they know more about treating AIDS and palliative care in resource-poor settings than American nurses probably ever will. This project is still in development, and I’ll be eager to see what comes of it.
At the beginning of May, we began following legislation that was coming to a head in the House of Representatives, a bill by Representative Henry Hyde (R-IL). During this time we wrote op-eds for newspapers around the country and responded to many articles with letters to the editor. We had doctors meet with Congressmen, and arranged for a specialist to testify for the House. We sent daily legislative updates to our members, many of which I wrote. The legislative process still baffles me, but it was an amazing learning experience to watch this bill pass in the House and eventually the Senate as well. It’s a huge amount of money: $15 billion over 3 years, and clearly a great start. However, there are problems too, as several important amendments were voted down on partisan lines, and there seems to be a lot of money going to new bureaucratic offices. With so many lives at stake the political bickering disgusted me. For example, Senate Republicans voted down an amendment offered by Senator Kennedy (D-MA) that would have required treatment programs to purchase the best quality antiretrovirals for the lowest cost, a seemingly reasonable provision. But Republicans were instructed by Majority leader Senator Frist to vote down any and all Democrat-sponsored amendments, as President Bush wanted a "clean bill" so it could be signed before the G8 Conference. It was all about image.
An amendment that was approved requires 33% of prevention money to go to abstinence-only programs. PHR believes these programs are ineffective without messages of monogamy and condom use as well. PHR policy recommendations are all based on the best available research and medical practices with human rights in mind—"an alliance of science and consciousness"—and the best research says that the model used in Uganda of ABC prevention (Abstinence, Be faithful, Use Condoms) is most effective, not abstinence-only models that have never been proven effective in the US and are often irrelevant in other cultural situations. Lives could be saved with education about condoms, and personally, I believe that conservative Christian Congressmen could better promote religion by having more compassion for these lost lives. Another approved amendment limits contributions to the UN’s Global Fund for AIDS, Tuberculosis, and Malaria based on what other countries give. This seems petty to me, and I also feel that most of our money should be given to this multilateral organization that funds local programs which have been proven effective, instead of given as often-biased bilateral aid. However, the most important issue with the AIDS bill we saw passed is that while the $15 billion has been authorized, it has not been appropriated, and there is no money in the President’s budget to do so. Unless President Bush requests that his budget be changed and the appropriations sub-committees appropriate the full $15 billion, the money may never be seen. The Campaign swung into full force over this, with newspaper articles and grassroots pressure on the President. Getting enough money to fight AIDS will be a long battle, but it’s an important one. The US leads an international community that must be committed to human rights to create a world where life means something, and today’s biggest human rights issue is AIDS. As I said, I don’t feel I could ever do enough, but I feel I did something working on the Health Action AIDS Campaign.
My internship at PHR kept me very busy, and I learned innumerable things about non-profit work, health policy, the AIDS crisis, and more. I worked with amazing people that became friends and role models, making great memories and having wonderful conversations. I lived on my own in a city for the first time, and got to experience what having a real job feels like. I also worked hard, with an internship and a restaurant job to hold down. I was inspired and strengthened in my commitment to public health work and becoming a doctor. And perhaps most valuably, I learned something about integrating ethics and beliefs into my career. I saw amazing doctors do this, and also how important it is, especially in the medical profession. I met Dr. Paul Farmer, a Harvard Professor who spends much of his time living in a one-room shed in Haiti. I also saw a lecture by Dr. Khasan Baiev, who was the only practicing physician during the Chechnyan War, performing up to 60 amputations a day with no electricity or bandages, insisting on treating patients from both sides though he was imprisoned and threatened for this, and remaining committed to his patients’ health and helping people in need through it all. He is a great doctor—he may not be the top of his field, but his heart and soul are in his work. As I move on from here I will carry that commitment to human life, to human rights, and to being a great doctor with me. And as soon as I get that MD, I’ll be a Physicians for Human Rights member for life.
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