2011 marks the 30th year of AIDS. We’ve come a long way in the last three decades, particularly regarding our federal government’s response to the epidemic. But we still have a lot of work to do, especially among minority communities.
"The View from Here" is a special year-long series to mark the anniversary. Leading advocates, doctors, researchers, politicians, philanthropists, educators, public health professionals, journalists and celebrities are answering the same set of questions each month. This month, two influential policy makers: Congresswoman Barbara Lee and Ernest Hopkins, director of federal affairs at San Francisco AIDS Foundation.
1. We’ve learned a lot in 30 years. What do we have yet to learn?
Lee: We obviously have come along way in understanding the science behind HIV, how it spreads and how to attack it. But we’ve got to crack the mystery of how to make an effective vaccine against AIDS.
Hopkins: It is a humbling and frustrating reality that 30 years after the beginning of the epidemic we still have not learned the lesson that health care is a human right and must not be dependent on where you live, income status or any other mutable or immutable characteristic.
Lee: In terms of policy – I’m disappointed that we haven’t learned yet to put old arguments about ideology and cost-effectiveness behind us. We really should be throwing everything we’ve got against this disease and not holding back because we don’t like a particular policy, or because we think it’s too expensive – that’s really the wrong approach to fighting AIDS.
I’m disappointed that we still have to debate why needle exchange is an effective prevention method; or why treatment as prevention makes sense; or why we have to reach out to sex workers in ways that don’t stigmatize them; or even just acknowledging the basic human dignity of lesbian, gay, bisexual or transgender people who yearn for the same opportunity to live their lives in peace and to love who they want without fear of judgment, discrimination, or violence.
Hopkins: In the 30 years since the beginning of this epidemic people have become more mobile and the ability to transfer any number of conditions across continents and hemispheres has grown dramatically. The epidemic will not end, and none of us will be free of HIV transmission risk until we commit in a concrete way to accessibility to treatment for all infected and elimination of the discriminatory barriers of stigma, homophobia, racism, poverty and the marginalization of sex workers and drug users in our society. In an environment where government and philanthropic funding is predictive of our values as a people we must shift our values to promoting health and wellness
Lee: Despite the progress that we’ve made in fighting this disease, as a society we’ve still got a long way to go to fully and truly live out the promise of the ideals that America stands for.
2. What was your deciding moment, when HIV/AIDS became an important issue in your life?
Hopkins: My deciding moment came early in 1982 when I realized that many people I knew were sick and dying quietly in isolation and fear. I was in college at Columbia University in Manhattan, and a number of students quietly left school shrouded in fear and stigma to die with families paralyzed by the unknown. Acquaintances from the bars and discos suddenly disappeared. The once vibrant, exciting gay community of New York City was becoming a scary and marginalized place, so I joined one of the first buddy groups created for and by gay men in New York which eventually formed the basis of what became Gay Men's Health Crisis.
Lee: I first got involved in HIV/AIDS issues back in the mid 1980’s. I remember talking with some members of ACT UP about the issue of needle exchange. And then I began participating in protests with people like John Iverson and Maudelle Shirek. When I got to the California State Legislature in the 1990’s I started working on legislation, and I continued the activism I picked up on the streets when I got to Washington D.C.
I really got involved in the global struggle against HIV/AIDS through my friend and predecessor, former Congressman Ron Dellums. Together we came up with the idea to set up a trust fund at the World Bank to help finance what we called the AIDS Marshall Plan for Africa. This idea eventually became the framework for what we now know as the Global Fund to Fight AIDS, Tuberculosis and Malaria. From there our work grew and expanded, leading to the creation of the President’s Emergency Plan for AIDS Relief (PEPFAR) in 2003, the enactment of legislation to help orphans and vulnerable children affected by HIV/AIDS in 2005, and the reauthorization of PEPFAR in 2008. And we’re not done yet.
3. With ever-increasing public health issues to contend with, why should anyone still prioritize HIV/AIDS?
Lee: Quite simply, we’ve got to focus on HIV/AIDS because it’s the right thing to do. HIV/AIDS thrives on poverty, inequality, social stigma and discrimination. In tackling these issues, we must also address HIV/AIDS because the disease is inseparable from the social determinants of health that feed it and spread it.
Hopkins: When one attempts to seek the root causes of the HIV epidemic and what continues to drive it, many other public health issues are either key drivers or directly associated with facilitating HIV infection. The fact that HIV is an infectious disease is often lost in the media as comparisons to cancer, diabetes or heart disease are made. HIV is preventable, and while more effective treatments have been developed that make infected individuals much less infectious, the ability to develop a curative vaccine is still possible and must be prioritized.
Lee: Given the global impact of HIV/AIDS – over 33 million people living with the disease around the world, including over 1 million here in the United States – we can’t afford not to focus on it. Fighting AIDS is morally right, it saves lives, and it saves money.
4. What keeps you up at night?
Lee: I’m worried that we will lose the progress we’ve made against this disease in the rush to cut budgets and reduce the deficit. Fighting HIV/AIDS through our domestic and global programs is one of the smartest investments we can make. It’s something that both Democrats and Republicans have worked together on over the years, regardless of who was in power.
Hopkins: I’m kept up at night by the thousands of young, gay men who put themselves at risk because they don't value themselves and society reinforces stigmatizing, marginalizing messages to young, vulnerable souls who deserve love, guidance and support from family and society. Growing up in the best of circumstances is challenging; to do so without the love and support of family and friends and with the condemnation of society is abusive.
Lee: The urgency and energy that created the Ryan White CARE Act and that helped to create the Global Fund to Fight AIDS Tuberculosis and Malaria, and the President’s Emergency Plan for AIDS Relief seems to be dissipating, and we can’t have that. Thankfully there is a passionate and committed group of activists, policymakers, and legislators who won’t give up, and who will continue to fight for what is right.
5. Three decades into the epidemic, what gives you hope?
Lee: People who are living with HIV/AIDS each and every day, who show their determination and their resiliency to persevere, to stand up for their rights, and to demand that their fellow citizens and their governments recognize and pay attention to them—that’s what gives me hope.
Hopkins: The resilience of the human spirit. I am constantly inspired by examples of individuals who face horrible challenges every day and find ways to meet them with grace and innovative solutions.
Lee: It’s the people on the front lines of this disease, the peer educators, the counselors, the doctors, nurses, technicians who care for and help those who are infected and affected by this disease.
It’s the energy and the commitment of students and activists who won’t take no for an answer, who insist on the value and dignity of every human life, and - whether they are marching through the streets or in the halls of Congress – who remind us each and every day what we are fighting for.
They all give me strength and they all give me hope for the future, regardless of what may happen in Congress, the struggle will continue.
It’s this collective activism that led us to overcome seemingly insurmountable barriers over the years, and that most recently led to my work to lift the HIV travel and immigration ban, and to bring the International AIDS Conference back to the United States after more than two decades.
Our struggle and our successes show that if we organize and stay committed, that “yes, we can” beat this disease, create an AIDS-free generation and truly stamp this disease from the face of the earth.
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