In July of 2000, 5,000 people with HIV marched through the streets of Durban, South Africa. Their message was radical: Every person with HIV has a right to treatment. At that time, less than 1% of all people with HIV who needed treatment had access to it. The other 99% were condemned to wait for death, hoping that medications would somehow appear. The march showed that people with HIV around the world would not sit quietly. They would stand up, along with their allies, and demand that everyone have access to treatment.
Since that march, much has changed. The U.S. has led the way in increasing access to HIV treatment, prevention, and care programs in many countries. In January 2003, after a year-long activist campaign, President George W. Bush announced a bold new initiative to invest $15 billion over five years in global AIDS programs. That program is known as PEPFAR, or the President's Emergency Plan for AIDS Relief.
PEPFAR changed the course of history. Before PEPFAR, convincing people to get tested for HIV was nearly impossible, because a positive test result meant certain death. But once treatment became available, people began to get tested at much higher rates. Those who had access to treatment (about 4 million people) were now able to live full lives, working and caring for their children.
If the history of the epidemic were written two years ago, the story would have been one of tremendous success and optimism. Congress had passed a renewal of PEPFAR, and promised $39 billion over five years for global AIDS. This would have doubled the number of people in treatment, and trained 140,000 new health workers. Organizations around the world were rapidly scaling up services because of the increased funding promised.
But now, that success is under attack. Governments are using the financial crisis as an excuse to scale back their commitments to fight AIDS. For the first time in ten years, AIDS programs in Africa are facing the possibility of having to create waiting lists for treatment. People are beginning to have to travel long distances to get medicine because it is no longer available where they live.
This is the story of how AIDS activists won historic commitments from President Obama and Congress to continue to fight global AIDS. It's the story of how AIDS programs came under attack from ideologues who felt that treatment is not "cost effective." And, most importantly, it's the story of how people with HIV and their allies continue to mobilize to make the same radical demand made in 2000 -- that all people, no matter where they live, have a right to HIV treatment.
In 2007, a small handful of activists gathered to discuss how the next president should address AIDS. There was a real opportunity to build upon the success of PEPFAR, and to make it even better. Out of that meeting came a platform for each candidate, and the "08.Stop.AIDS" campaign, with its ten-point platform of specific things the next president must do.
The platform was bold. It called for $50 billion over five years to be invested in fighting AIDS, an end to abstinence-only sex education, funding for syringe exchange, and support for organizations that worked with sex workers. Activists wanted to see the next president support a new health workforce initiative that would train hundreds of thousands of new doctors and nurses.
We faced an uphill battle. Democratic candidates felt that HIV had already been addressed by President Bush. Republican candidates, catering to a fiscally conservative base, were unwilling to support the call for an increase in AIDS funding.
Even Barack Obama, who had recently traveled to South Africa to meet with AIDS activists and to his father's home in Kenya to take a public HIV test, was resistant. In Orangeburg, South Carolina, I caught up with him in the alley behind the first Democratic debate. I shook his hand, and held on while I asked him if he would be willing to commit to increase funding for global AIDS to $50 billion over five years. He pulled his hand away, said he wasn't sure, and jumped into his car.
The next day, in Charleston, a group of activists joined the receiving line, to shake the candidate's hand. Each in turn asked him if he would be willing to support $50 billion over five years. When he got to me, he stopped and said, "I remember you. You asked me a question yesterday." But he moved on without answering the question.
For six months, activists continued to go to town halls, rallies, and volunteer appreciation nights, in a tactic known as "bird-dogging." They tried to speak with all of the candidates, one of whom might become our president. And one candidate after another agreed to support the $50 billion request. But Obama held out. Every time someone asked him about it, whether it was in Iowa or New Hampshire, he would refuse to answer.
Activists increased the pressure. A handful of candidates supported the funding increase, but several, including Obama, hadn't agreed. And no candidate had agreed to the entire platform. So a broad coalition, including ACT UP Philadelphia, ACT UP/NY, Health GAP, the New York City AIDS Housing Network, the Student Global AIDS Campaign, and the American Medical Student Association, organized a march to the Democratic debate in Philadelphia. Since it was just a few days before Halloween, they dubbed the march "Trick or Treat-ment."
On that day, every Democratic candidate, including Obama, released a promise to provide $50 billion over five years for global AIDS. But the coalition wanted full plans to fight AIDS from each candidate. And by World AIDS Day 2007, each democratic candidate had released a comprehensive plan. Obama's plan pledged "to provide at least $50 billion by 2013 for the global fight against HIV/AIDS, including our fair share of the Global Fund, in order to at least double the number of HIV-positive people on treatment and continue to provide treatments to one-third of all those who desperately need them." While no Republicans had joined in supporting the platform, we deemed the campaign a success, and moved on to the next stage.
By January 2008, it was clear that Barack Obama had a good shot at being the democratic nominee for President. His events had gotten much larger -- now, instead of 100-person town halls, there were 10,000-person rallies. Activists continued to shake his hand in rope lines and to tell him why he needed to talk about AIDS. Even though he had released his AIDS plan, he was not talking about it. We felt that HIV, a disease that kills two million a year and infects three million a year, warranted more attention on the campaign trail.
Congress was beginning to debate legislation that would reauthorize PEPFAR for another five years. The bill, based largely on the candidates' platforms, promised $48 billion over five years, doubling the number of people in HIV treatment, training 140,000 new health workers, and contributing $2 billion a year to the Global Fund. When seven Senators put a hold on the bill, activists asked Obama and McCain to be cosponsors. Both did so. After another demonstration, the hold was lifted and the bill passed a week later, overwhelmingly.
Activists were elated. But the legislation just authorized the money; it didn't actually spend it. That had to be approved every year, in a separate process. So, while activists had won a historic victory, we couldn't just pack up and go home.
Barack Obama became the first person elected to the presidency with a plan to fight AIDS. He hired Rahm Emmanuel as Chief of Staff, and installed his brother, Dr. Ezekiel Emanuel, as a senior advisor on health policy, with direct control over global health funding. Dr. Emmanuel had recently published an article in the Journal of the American Medical Association arguing that global AIDS money could be better spent on other health challenges. In the wake of that article, a thousand AIDS activists, many with HIV, took to the streets to congratulate Obama and show him that he had their support to enact his AIDS plan. They marched to the office of Obama's transition team and spoke with them about why the president-elect must keep his promise.
It seemed destined to happen -- we all feared it would. So we captured screenshots of Obama's campaign website. And sure enough, shortly after the inauguration, the promise to invest $50 billion over five years disappeared from the White House website. A few weeks later, the President's first budget came out. Instead of the promised increase in funding for PEPFAR and the Global Fund of $1 billion a year as, there was an insignificant $150 million increase in funding -- barely enough to keep pace with inflation.
In April, at a briefing on the President's Global Health Initiative, the President's advisors discussed the details of this new proposal. But during the entire presentation, not a single detail was mentioned about what level of funding it would receive. All they said was that President Obama was committed to ending AIDS, and that the U.S. would broaden the scope of its global health efforts to include maternal and child health, reproductive health, and neglected tropical diseases. Half the questions from the audience were variations of "This all sounds good, but will you be increasing overall funding for global health to cover this, or will it be taken out of PEPFAR's budget?" The advisors said that was still being worked out.
Not two minutes after the meeting, everyone attending got an email with the funding details -- making it impossible to question them directly. But some quick analysis showed that the Global Fund and PEPFAR would not receive anywhere near the level of funding Obama had promised. What the GHI amounted to was repackaging old programs, and scaling back on commitments to fund AIDS. Put another way, the "global health pie" was the size Obama promised, but now it was cut into more slices, making the biggest slice (AIDS programs) dramatically smaller.
Between the financial crisis, pressure to rein in spending, and Dr. Emmanuel saying that we should invest in less expensive health interventions, rather than HIV treatment, activists had to respond.
On July 7, 2009, 35 activists chained themselves together in the Capitol Rotunda and unfurled a giant banner demanding that Congress fund global AIDS, syringe exchange, and AIDS housing. They chanted loud enough that Senate Majority Leader Harry Reid and Speaker of the House Nancy Pelosi could hear them in their offices, and were arrested. On World AIDS Day, hundreds of AIDS activists held a funeral in front of the White House to mourn the loss of life due to Obama's broken promises. They released a report card on the administration's progress on fighting global AIDS. The grade: D+.
In early 2010, Obama proposed to freeze all non-military spending, so activists brought 600 pounds of ice to the White House, a reminder that a frozen budget leaves people with AIDS out in the cold. When the President's budget came out, global AIDS programs received an insignificant 2% increase not even enough to keep pace with inflation. But worst of all, Obama proposed to cut funding for the Global Fund. Every year since 2002, the Global Fund had received an increase. This was a huge blow, especially since the Global Fund was facing a financial shortfall so severe that existing grants might be cut.
There had always been suspicions around the administration's claims that these tiny funding increases were having no effect on the ground. But soon after the budget was released, activists found a smoking gun -- a memo from the CDC to organizations implementing U.S.-funded AIDS programs in Uganda. It read:
The U.S. Government recognizes that in the coming years, the number of patients in need of antiretroviral treatment will increase dramatically. While the U.S. Government is committed to continuing treatment for those individuals already enrolled on antiretroviral treatment, funding for HIV programs is not expected to increase in the near future. As a result, PEPFAR Uganda cannot continue to support scale up of antiretroviral treatment without a plan for the Government of Uganda on how the patients will be sustained.
This needed to become public. We took it to the New York Times, which ran a front-page story. It told of one Uganda clinic turning away 800 people a month because there was no funding for new AIDS treatment. Worst of all, these were mostly people who had been tested for HIV with U.S. money and promised medication when they got sick.
On May 13, 2010, as President Obama attended a fundraiser in New York City, 500 people marched through the streets carrying signs reading, "Obama to People with AIDS: Wait to die." Nearly a dozen were arrested trying to enter the fundraiser. On June 17, 2,000 people marched to the U.S. Embassy in Johannesburg, South Africa. They delivered a letter calling on the U.S. to increase funding for PEPFAR and the Global Fund to the levels Congress had authorized.
In July, over a thousand activists from every corner of the globe marched through the halls of the International AIDS Conference in Vienna and staged a "die-in" in front of the opening session. Chanting "Broken promises kill," they took the stage, making sure that everyone in the room knew that governments around the world -- not just the U.S. -- were failing to keep their commitments to fund AIDS programs.
The Obama administration could no longer ignore us. Eric Goosby, the U.S. Global AIDS Coordinator, used the conference to claim that the U.S. was not breaking its promise. Dr. Emanuel blogged that the U.S. was not retreating from AIDS funding promises. National Security Council Member Gayle Smith wrote a piece for the White House website detailing the administration's commitment to fighting AIDS. But at every turn, there were activists demanding that the U.S. increase funding.
The activism continued at a U.N. summit on poverty in September, where President Obama spoke about the U.S. commitment to fighting AIDS. But activists in New York and Philadelphia marched in long, single-file lines, visually demonstrating the consequences of broken promises. A handful of activists disrupted Obama at a fundraiser in Manhattan, and later in Philadelphia and Boston, garnering national attention.
Fall is the time when the administration takes stock and begins to plan the next year's budget. Obama could reverse course and dramatically increase funding for global AIDS to the levels promised. He could propose $8.25 billion for PEPFAR and another $2.25 billion for the Global Fund, which would be on par with what Congress authorized. He could speak out in favor of the Financial Transaction Tax (see "Could a New Tax Save the Lives of Millions of People With HIV Around the World?" in this issue) -- a tiny tax on the trading of currencies by banks. Economists estimate that it could raise $33 billion a year. France and the U.K. are already in favor of it. But will the U.S. support it?
This campaign has been a success in that people took to the streets and demanded that the president keep his promise. But we haven't won yet. There are still ten million people in need of HIV treatment. Programs are continuing to turn people away due to lack of drugs.
There's a real chance to win this campaign and ensure that every person has access to lifesaving treatment. We can demand that our Congresspeople push Obama to increase global AIDS funding. We can write letters to local papers. We can join protests, especially on World AIDS Day, to demand that the President keep the promise he made three years ago to fully fund global AIDS. You can learn more about the campaign at www.TakeANumber.org. I can't wait to see you on the streets!
Kaytee Riek is a member of ACT UP Philadelphia and Director of Organizing for Health GAP.