Working Together as Partners in the Global HIV/AIDS FightAmbassador Randall Tobias, United States Global AIDS Coordinator
Remarks at the National Associaton of People With AIDS Staying Alive 2005: Positive Living Summit
Los Angeles, California
August 21, 2005
Thank you very much. It’s an honor to be here with you. I know it’s a Sunday morning, and the third day of a very full conference, so I really appreciate you joining me to reflect on the global HIV/AIDS pandemic this morning.
I want to take this opportunity to offer my thanks to Terje Anderson for inviting me to speak to you today, and even more, for his spirit of partnership. I first met Terje at last year’s International AIDS Conference in Bangkok. I think Terje would agree that the environment in Bangkok was not especially conducive to calm and reasoned conversation, but we managed to have one.
That was the beginning of a very positive working relationship, and I’ve appreciated Terje’s counsel on the President’s Emergency Plan for AIDS Relief since that time. In May, Terje attended our annual Field Meeting in Addis Ababa, Ethiopia. The meeting included many representatives from the host nations where we are working, including government ministers, and I think Terje’s active participation sent an important message.
So Terje, thank you for your partnership.
For that matter, I want to honor the contributions of all of the people who are living or have lived with HIV/AIDS, including those no longer with us. Here in the United States, people living with HIV and AIDS waged a long and often lonely fight to push HIV/AIDS onto our nation’s agenda.
At a time when the virus was shrouded in confusion and stigma, members of this community highlighted the need for a compassionate response that involved all sectors of American society. You persisted under difficult circumstances – and our nation is in your debt for it.
As the devastating impact of HIV/AIDS in the developing world became clear, many of you were again leaders. You called for America to meet its challenge of leadership in the global fight against this killer.
You helped our nation move beyond compassion, important though that was, into a new era of action on global HIV/AIDS. That era of action, of U.S. leadership on global HIV/AIDS, is now well under way.
To President Bush, as to many of you, it was a matter of simple justice that people in the developing world obtain access to effective prevention, to antiretroviral treatment, and to care for those infected and affected by HIV/AIDS. That belief was clearly a major impetus for his Emergency Plan for AIDS Relief, which he announced in his 2003 State of the Union address. In the President’s view – and my own – the U.S. has a unique ability to lead the world in rising to this challenge – and we are doing just that.
The Emergency Plan has now been up and running for nearly two years, and it is an extraordinary venture. It is the largest financial commitment any nation has ever made to an international initiative dedicated to a single disease. Under the five-year strategy we’ve put in place, America is now fighting HIV/AIDS with programs in 123 countries around the world, with a strategic focus on 15 of those countries that together account for over one-half of the world’s 40 million HIV infections. We are committing intensive resources to show that this work can in fact be done in the most difficult places in the world, and that there is hope of winning this fight.
I have now had the opportunity to visit all 15 of our focus nations, many more than once, as well as quite a few of the other places where the Emergency Plan is operating. I described these places as “difficult” just a moment ago, and they are often most difficult for those who live with HIV/AIDS.
Generally speaking, those needing health care in resource-poor nations face a range of challenges that are hard to imagine here in the industrialized world. There is a dearth of health clinics, hospitals, laboratories -- the health network infrastructure so important to the provision of quality health care.
But even good infrastructure is of little use without trained health care personnel. Mozambique has only about 600 physicians to serve a population of 19 million people. The need for trained personnel isn’t urgent, it’s desperate. That’s true for the entire array of serious health issues facing people in places like Mozambique – but the shortage is especially urgent for people living with HIV/AIDS.
As many of you have experienced, ART regimens are challenging to administer and maintain for even highly trained physicians. So the human capacity issue is a fundamental one for helping people in need of therapy.
Exacerbating these issues, however, is the effect of stigma and discrimination against HIV-positive people in the nations hit hardest by the virus. In many societies, disclosure of HIV-positive status is a high-risk behavior, and community support for those living with HIV is in tragically short supply.
The need for public leadership in fighting stigma is tremendous, but in many places this leadership is in a very fragile, early stage of development – if it is happening at all. The power of stigma has made it very difficult for people living with HIV to come forward and become public leaders in the way that has occurred here in the United States. Some courageous people have done so, as I’ll discuss in a moment, but there is a need for many more.
Of course, the burden of leadership in the fight against stigma should not be borne by HIV-positive people alone. National and local political leaders, religious leaders, business leaders, informal community leaders – all of them have essential responsibilities they must meet.
I consider encouraging this leadership to be one of my primary responsibilities. Representing the United States in this role puts me in contact with leaders of all types in our host nations, and I use those opportunities to urge them to do all they can to combat stigma. Fighting stigma in word and deed is something leaders owe not only to people currently infected with HIV, but to all who are at risk of being impacted by it – that is, everyone.
One of the most important fronts in the fight against stigma is counseling and testing. In many places, seeking to learn one’s status means subjecting oneself to discrimination and abuse. So we are working to make it clear that testing is for everyone.
When I was in Ethiopia last year, I made a point of being publicly tested. The following day at a ribbon-cutting, I mentioned that I had done so, and the Mayor of Addis Ababa announced that he was going to be tested himself. That led to a cascade of local leaders being tested, and that had a tremendous impact, helping to send the message that testing is, indeed, for everyone.
In China, I recently joined Pu Cunxin, a beloved actor and an inspiring leader on HIV/AIDS, in being tested publicly. It’s local leadership that does the most to erase stigma, to the benefit of everyone in society, including people living with HIV and AIDS. And even in Swaziland, where HIV has spread under cover of silence to infect nearly 40 percent of the adult population, I joined the Permanent Secretary of Health for a public HIV test broadcast on Swazi national television. He was the first Swazi leader to be tested publicly.
Of course, in addition to encouraging leadership, making antiretroviral treatment accessible to HIV-positive people also helps dispel stigma.
Let me try to put the numbers I’m about to cite in some perspective. When President Bush launched the Emergency Plan in his 2003 State of the Union Address, it was estimated that of the 4.1 million sub-Saharan Africans who, under ideal circumstances, would benefit from antiretroviral drugs, only 50,000 were receiving them. On the ground, that reality is now changing – rapidly. After one year, the Emergency Plan was already supporting antiretroviral drug treatment for approximately 235,000 men, women, and children, most of whom live in sub-Saharan Africa. And that number is from the end of March, so the number is surely far higher today.
I’m very encouraged by that progress. It means that we are on track in our efforts to meet the President's ambitious goal of treatment for two million people by the end of 2008. When people in these communities see their neighbors – their family members – who were at death’s door, recovering and once again living a full, productive life, that deals a powerful blow to stigma. It opens the door to full participation in family and community life for people living with HIV/AIDS.
By the way, let me clarify an important point: the Emergency Plan also supports the whole range of health care, not only ART, beginning at the onset of infection. Our interventions support routine clinical monitoring of complications, prophylaxis and treatment of opportunistic infections, social support, support for caregivers, and many other elements.
People tend to focus on the ART numbers, and appropriately so, but the Emergency Plan seeks to support comprehensive prevention, treatment, and care for people living with, at risk of, and affected by HIV/AIDS.
In addition to our bilateral U.S. programs, another venue in which we have worked to advance the cause of HIV-positive people is the Global Fund to Fight AIDS, Tuberculosis, and Malaria, to which the United States is the largest donor nation. In each nation where the Fund provides grants, there is a Country Coordinating Mechanism, which is intended to provide broad representation of local stakeholders. We strongly believe that these need not just representation, but the true involvement, of people living with HIV/AIDS. I am pleased that the Global Fund Board adopted a policy to ensure this, and we are monitoring implementation on the ground to make this a reality.
I’ve discussed some of the impacts of HIV/AIDS on people in the developing world. At this point, I’d like to turn to the effect that HIV-positive people in our host nations are having on the pandemic.
In the face of poverty, stigma, and poor access to health care, HIV-positive people in our host nations are taking on leadership roles in their countries’ responses. As you well know, these communities have to be involved if their nations are to have success in defeating the pandemic. For our part, the United States is committed to partnership with these leaders as they offer their practical contributions to successful prevention, treatment and care programs.
Let me mention just a few of these courageous leaders.
Earlier this year I visited Haiti, a nation wracked not only by natural disasters, poverty, and unrest, but also a severe HIV/AIDS crisis and harsh stigma against those infected.
But I was heartened to see the work of organization of HIV-positive people known as “POZ” that is an Emergency Plan partner there. People from POZ make presentations to explain to the local citizenry the facts about HIV, and what ART can mean. I saw POZ in action at the opening of one of the new ART clinics the U.S. is supporting, and I saw the tremendous interest in both the presentation and the people of POZ. They’re breaking down barriers that can keep people from accessing life-saving treatment, and we are proud to be partners with them.
A second example I’ll mention comes from Vietnam, another of the 15 Emergency Plan focus nations. One promising project is linking people living with HIV/AIDS with health care workers in treatment settings. In the first phase of the project, a cohort of people living with HIV and AIDS have been trained in treatment literacy in order to serve as peer treatment educators, and now these educators are being linked to ART health systems. They’re really a two-way information bridge between the community of people living with HIV and AIDS and the health care system, making the treatment system more responsive to people’s needs and helping people understand and adhere to treatment. As a side benefit, we’re learning that these peer educators are also providing opportunities for targeted prevention education.
Obviously, it all depends on the willingness of these HIV-positive people, in a society in which stigma remains severe, to take on active roles of leadership. It’s inspiring that they are coming forward to do so, and we’re grateful to have them as partners.
I could cite many more examples. A support group of HIV-positive people in Zambia gives public musical performances around Lusaka, helping dispel myths and spread the good news about ART. In Ethiopia, our U.S. country team was so encouraged by the leadership being demonstrated by associations of people living with HIV/AIDS that it reprogrammed Emergency Plan funds to deepen our partnership with them this year.
As you see, involvement of people living with HIV/AIDS is central to our Emergency Plan strategy on the ground. I make it a point to meet with local associations of people living with HIV and AIDS, as I find that no other community better articulates both the challenges and possibilities in combating HIV and AIDS. In fact, we find that our strong support of these organizations provides benefits beyond the fight against the virus.
I’ve gotten to know a doctor named Agnes Binagwaho. She is the head of Rwanda’s National Commission to Fight AIDS, and an example of inspiring leadership within the government sector of a nation. Agnes has told me that the President’s Emergency Plan is supporting the development of democracy in Rwanda. By fostering the growth of civil society, she believes that we are supporting that nation as its fragile democracy matures. Even though she’s part of the current government, she recognizes that democracy is not just about having an elected government – it’s about having a society with outlets for people to express themselves and work to better the nation, a society that creates opportunities for all people’s contributions.
We can’t confer legitimacy, in the eyes of the public, on institutions in another country. Yet we can help provide opportunities for institutions to succeed and thus bolster their legitimacy. Success helps strengthen institutions of all types and contribute to their public acceptance – and that is certainly true of organizations of people living with HIV/AIDS. Especially in nations with so many people who are HIV-positive, we know that leadership from the community of people living with HIV and AIDS is indispensable. That’s another reason why they are such important Emergency Plan partners.
Of course, HIV-positive people from the United States are also making vital contributions to the Emergency Plan. With his permission, I’d like to highlight one of them, Buck Buckingham, who has worked closely with NAPWA since the late 1980s and whom many of you undoubtedly know well.
Buck has been HIV-positive for 27 years, and learned of his status 17 years ago. He has worked to combat AIDS for over 20 years, initially at the community level in Dallas, then in Washington, where he worked in a leadership position on the Ryan White CARE Act and helped establish the White House Office on AIDS. In 1999, Buck got involved in international HIV/AIDS work.
When the President announced the Emergency Plan in 2003, one of the key decisions was that we needed interagency coordinators in each of our focus nations, just as I am the interagency U.S. Global AIDS Coordinator in Washington. Buck has the honor, I believe, of being the first person named as a coordinator.
He serves in Kenya, a critically important nation and one that faces daunting challenges. Despite those challenges, under Buck’s leadership our U.S. team in Kenya won the “Spirit of PEPFAR” award for being our best country team for the first year of the Emergency Plan.
Buck’s contribution to our work is not limited to our Kenya program. At our Annual Field Meeting in Addis Ababa, which I mentioned earlier, I recall one plenary session that highlighted the importance of clinicians really listening to patients in order to support adherence to antiretroviral therapy. That’s a familiar issue here in America, but over there, ART is still quite novel. During the Q&A, Buck identified himself as a longtime HIV-positive person and endorsed the message – and it was clear that his comment had a powerful impact with the audience. Buck is providing tremendous leadership to the Emergency Plan, and I’m deeply grateful for it.
All of our efforts, of course, must be undertaken with sensitivity to the priorities of the people in the places we serve. In discussing the differences between working in the U.S. and working in the developing world, Buck wrote in an email, “What I know for sure is that every day out here comes with multiple reminders of how much I still have to learn and how humbly I must walk.” All of us who get involved in global HIV/AIDS must keep that thought in mind, whatever our role.
As I reflect on the global pandemic, it occurs to me that here in the United States, we tend to think of the term “activist” as something that applies to someone who’s main activity is advocacy. I believe we need a more expansive definition of the term – one that embraces those who are making things happen in the field.
To me, the people I’ve been describing who have put their shoulders to the wheel of programs for prevention, treatment, and care – the HIV-positive people in Haiti, in Vietnam, in Zambia, in Ethiopia, Kenya, and countless other places – these are the real activists of the global AIDS fight. In fact, I’d even call them heroes.
All of us, whatever our status, share a great responsibility, and time is short. One of the many evils of HIV/AIDS is its power to sow division, but facing an enemy as deadly as HIV/AIDS, division is a luxury we cannot afford.
I believe that we are putting old divisions behind us, and increasingly working together in a spirit of partnership. What a privilege it is to have HIV-positive heroes around the world as partners with the American people through the Emergency Plan. Please know that our partnership with them will grow in the days ahead.
Thank you very much.
Released on August 22, 2005