Text from the keynote speech by Charles King, president and CEO of Housing Works, at the 10th Annual Prevention and Outreach Summit in Philadelphia on June 24, 2009.
I know that I was asked to speak on housing as prevention, and I will certainly get to it in my remarks. But, to be honest, that isn't what is really on my heart this morning, desperately important as it is. Instead, have titled this morning's speech, “We are the ones we've been waiting for: AIDS advocacy in the Obama era.” I have also taken the trouble to write this speech out so that I can clearly articulate my thoughts and not be misunderstood.
The election of Barack Obama as the 45th president of the United States clearly marks an important moment in the history of this country. In a nation born with the original sin of slavery and racism written into its very constitution, a nation that took some one hundred years to find its way to emancipation and another hundred years after that to repudiate segregation, a nation in which a Black man is still 20 times more likely to go to jail than a white man and 10 times less likely, if he hasn't gone to jail, than a white man who is a convict, to be hired for a job, the election of an African American as president is certainly a remarkable moment in history.
Moreover, this election was no mere signifier to be noted in the history books. First, it was without question a repudiation of the eight prior years of unilateral and foolhardy militarism, unbridled cronyism, lassie fair capitalism, no-nothing nativism and a deliberately divisive use of rightist religious and cultural ideology manifest by the Administration of Bush Junior. And, without question, it spoke to the desire of most white Americans to move beyond the stain of racism that continues to taint so many of our day to day interactions with suspicion at the very least. In fact, the historicity of this moment can be seen in the rising extreme rhetoric and rising individually-enacted but nonetheless consequential violence of the religious and political right. There is a real sense of profound diminishment and even grief among these segments of society who know that they have indeed lost something even if it is too intangible for them to articulate.
But, having said that, I also strongly believe that the significance of the election of Barack Obama can certainly be overstated, and it has been overstated by way too many people who yearn for progressive social change. Yes, it is true that Obama ran in the Democratic primaries as an anti-war, affirmative social change progressive. You could go on his campaign web site and chalk up the issues, whether the war in Iraq, women's rights, civil rights, labor, immigration, health care, urban affairs, LGBT concerns, you name it, he had staked out a progressive posture, generally not too, too radical, but almost always just a hair to the left of Hillary Clinton, if way to the right of Ohio's Dennis Kucinich. On AIDS, he called for a national strategy, committed to an increased global fight, and offered a platform that we could have written for him…in fact, if you look at the platform articulated by the Campaign to End AIDS and its AIDS Vote partners, we probably did, and we were thrilled when his campaign plagiarized from us.
And then there was his consistently eloquent talk of change we could believe in…coupled with soaring rhetoric that made the heart sing and yearn to believe….He could have been a good old Baptist preacher, for God's sake…only much cooler, much more articulate. But to tell the truth, 150 days into this administration, it is amply clear that Obama is in fact governing as a moderately conservative Democrat, much in the strain of his predecessor, Bill Clinton.
On war, notwithstanding the hay he made in his campaign for having opposed the invasion of Iraq, he has basically maintained the Bush trajectory on withdrawal from Iraq and significantly increased our nation's investment in war in Afghanistan and Pakistan. On the campaign trail, he repeatedly spoke to his commitment to women's right to choose their own destiny, over and over pledging to pass the Freedom of Choice Act. Yet, when questioned about it in his nationally televised 100 day press conference, he made a point to say that this legislation was not high on his priority list, not doubt sending the leadership of both NOW and NARAL into apoplexy.
Notwithstanding his claims to stand on the shoulders of the great civil rights activists of yesteryear, in almost every case that has come up in federal court since his inauguration, whether the right to sue for being tortured, the right to view photographs of US involvement in torture, limits on warrant-less surveillance or even the most recent case on the right to post-conviction DNA testing, Obama's Justice Department has taken the stand most antithetical to true civil libertarians. As to his debt to organized Labor, let's just say he was against free trade agreements before he was for them, and if you count priorities by the billions of tax dollars committed, he definitely favors saving the banks on Wall Street over the jobs on Main Street…and no economist today is comparing his bank reforms to Roosevelt's unless it is to say that there really isn't a comparison.
As to LGBT issues, don't look for an end to “don't ask, don't tell” any time soon. As General Gates made clear, we've got a war to fight, so we're not going to rock the boat now. Repeal of “The Defense of Marriage Act” is somewhere below the Freedom of Choice Act on the priority list. To be sure, this week the President signed an executive order giving partners of gay and lesbian federal employees a handful of rights, but no right to health care or survivors' pensions, the most important ones. In fact, the President was forced to issue the order when the Administration provoked loud outrage and the threat of a boycott by major gay funders of the Democratic Party by arguing in court against decisions by two federal judges granting married gay spouses spousal health insurance. Not only did the Justice Department make the argument that the Defense of Marriage Act, which denies federal recognition of state laws granting gay marriage, is constitutional, it did so by comparing gay marriage to incest.
The only reasonably progressive commitment President Obama has held to his health care reform, and even there, he has hardly staked out a radical position. He wouldn't even touch the truly progressive single payer proposal, and now is signaling his willingness to compromise on even a federal health insurance option for anyone who is not impoverished or disabled. Specifically, he welcomed as a potential compromise a proposal by Senator Kent Conrad of North Dakota to substitute regional or state-run health care cooperatives as a possible alternative.
When it comes to AIDS, well, he didn't say so out loud, but clearly AIDS isn't on the top of Obama's priority list either. Yesterday, as I am sure you saw on television or read in the newspaper, there was a horrible train wreck in the District of Columbia. At least six people were killed and dozens injured. The President immediately issued a statement expressing his and Michelle's condolences to injured and the families of the deceased and his thanks to the “brave first responders.” On March 16, the Washington, DC Department of Health issued a report reflecting the following: DC has an HIV infection rate of 3%, by far the highest HIV infection rate in the nation, and among the worst HIV infection rates in the world, 7% of Black men in the district are infected (as are some 50% of Black men in DC who have sex with men), and that the HIV infection rate has increased 22% in just two years. Notwithstanding the particular role the federal government plays in DC affairs, or the acclaim the Obamas have gotten for their interest in local Washington matters ranging from soup kitchens and homeless shelters to schools and churches, and even to hamburger joints, to this day, the President's press office has not said a word about the local AIDS epidemic raging in the shadow of the White House…and no shout out to the “brave first responders” either.
Remember, Obama promised to develop and implement a national strategy to address the epidemic within his first year of office. So now five months have passed, and we don't even have a plan to develop a plan. Call up Jeff Crowley, the Director of the White House Office of AIDS Policy, and ask him about it. What he will tell you is, “I hope to be able to announce a plan to develop the plan very soon.” Asked why it wasn't important to have the process announced by 100 days, the deadline activists had demanded, he was quoted as saying, “I don't believe in artificial deadlines.” Of course, that's why the President held a nationally televised press conference on his one hundredth day to catalogue all of the really important things he had already accomplished.
Not only is Obama not proving progressive on AIDS, but in some regards we are moving backwards in this Administration. Last year, President Bush pledged $50 billion to the fight against global AIDS over the next five years. Candidate Obama took the same stand, but President Obama put forward a budget that would spread that same $50 billion over six years. In other words, a cut over what Bush had proposed. Yes, President Obama has actually proposed cutting funding for global AIDS.
The one progressive thing Obama did on AIDS in the budget was to indicate that prevention dollars would follow science. But our friends at SEICUS will tell you that the loopholes in the language leave plenty of room for the federal government to continue to waste millions of dollars on abstinence-only funding. And the Administration has flat out refused to do anything to tamper with rules that allow AIDS prevention and services dollars, both international and domestic, to flow to faith based organizations that used the funds to proselytize and promote homophobia, and that discriminate in hiring and services based on religious affiliation, sexual orientation, and moral judgments about the applicant. (Let me be clear, I don't opposed faith-based funding, I am a minister called by God to carry out the work that I do, and I think more ministers should do the same. But it is both morally wrong and unconstitutional to use the funds as some of these groups do.)
But you wouldn't know any of this if you looked at the press releases put out by most of the leading AIDS organizations in response to the President's budget proposal. Most of them celebrated incremental increases to various to of the Ryan White Titles, AIDS, Incorporated's bread and butter, and a mere $10 million increase in spending for housing for people living with AIDS and HIV.
What I appreciate most are the arguments used by this Administration for its inaction. As you all will recall, last July, Congress finally lifted its statutory ban on HIV+ persons entering this country. However, the CDC has to promulgate new regulations that would lift the regulatory classification of HIV that perpetuates the ban. It took the Obama Administration until mid-April to submit to the Office of Management and Budget the proposed regulatory change that the Bush Administration had been working on. In meetings with the White House, it was explained that the review process that would result in promulgation of new regulations would take on the order of nine months, even at its most expedited. The advocates suggested that in the interim, if this really was of the highest priority for the President, he could issue an Executive Order granting a temporary blanket waiver.
This suggestion was met with outright indignation. “This Administration stands for two things,” the White House official explained. “Change, of course, and the rule of law. We don't circumvent regulations when we don't like them. We follow the proper procedures to change them.” Of course, if they don't like the CEO of General Motors, they don't need any regulatory authority to fire him. They just shove him out the door as a condition for the bailout. Meanwhile, real people are suffering because of a rule that everyone now agrees is stigmatizing and counter to good public health policy. (The International AIDS Society has even been considering bring its 2012 AIDS Conference to the Capital if we would only lift the ban…of course, given the President's lack of response to the report on the DC epidemic, perhaps he really doesn't want the attention the conference would bring.)
Another telling piece of evidence on the Obama Administration's commitment to AIDS was the decision to leave the ban on federal funding for needle exchange in the President's proposed budget. The President's staffers insist that the President still supports lifting the ban, but Crowley, speaking to this issue at AIDS Watch, counseled patience on our part, given the likelihood that lifting the ban would spark a battle in the cultural wars. The official, official line was a bit different. "We have not removed the ban in our budget proposal because we want to work with Congress and the American public to build support for this change," a White House official said. "We are committed to doing this as part of a National HIV/AIDS strategy and are confident that we can build support for these scientifically-based programs."
He added, "In recent years, Washington has used the budget process to litigate divisive issues and score political points. This practice, which both sides have engaged in, has limited our ability to tackle our major economic challenges. President Obama decided not to play politics as usual with this budget and while he remains committed to supporting the program he wants to address that through the normal legislative process." Oops, once again we pesky AIDS activists were suggesting an illegitimate short cut that this Change President couldn't countenance.
Of course, when the Senate was voting on its budget plan, Administration figures strong-armed the leadership into including an option of using a budget devise to avoid normal Senate rules that would allow Democrats to force the health care plan through Congress without the threat of a Republican filibuster, or delaying debate. It seems it's just fine to play politics with the budget when it is something really super duper important, but it wouldn't be right to do that with something to end the AIDS pandemic.
Now, I don't want anybody walking out of here saying, “Charles King from Housing Works just gave a speech against President Obama.” I like Obama. I really do. I voted for him in the Democratic primaries, and I'm from New York….and I took the train down to DC on a cold day in January so I could stand in the shadow of Abraham Lincoln while he was being sworn in. I'm just here to tell you when it comes to AIDS or any other progressive cause you might care about, Barack Obama is not the change you all have been looking for.
I'm sorry if I have knocked the wind out of your sails. But unfortunately, too many people have their hopes way too high and are putting their trust in all the wrong places. In fact, it is even worse than that. So many of us were shut out by the last administration…not matter how hard some of us tried to suck up…that we are happy just to have someone in the White House who will take our calls and invite us in for a meeting, no matter how superficial. Some of us genuinely hope he'll come through for us in the end, and others still aspire for a fancy job with a nice government title and the great health insurance plan that comes with it (unless, of course, you are a same-sex spouse). In either case, we hold our tongue and counsel others to do the same, because “we need to give him a chance.”
So when the Campaign to End AIDS called for accountability demonstrations in March to mark 50 days in office, folk thought it was premature. At AIDS Watch, just 48 hours shy of 100 days, instead of marching on the White House, we sat a few blocks away and politely listened as Jeff Crowley counseled us to be patient. And today we sit here in Philadelphia at another annual AIDS conference, talking about important stuff to be sure, but still not collectively demanding the structural and systemic changes that would really bring AIDS to an end.
So let's take a look at some of the things we really ought to be doing if we really want to end the AIDS epidemic. Five years ago, the Campaign to End AIDS distilled it down to four simple things:
Provide treatment, services and care, including housing, to every single HIV+ person who needs it;
Implement prevention strategies that follow science and not ideology;
Ramp up research, not just for a cure or vaccine, but also for innovative prevention strategies such as vaginal and anal microbicides; and
End stigma against people living with AIDS and HIV.
Since C2EA developed this four-point platform, the research has advanced on several fronts. First, there have been a number of important studies released on the impact of early treatment. Two studies, released in the last 60 days, indicate that initiation of ARV's among people infected with HIV before the t-cells decline below 500 copies reduces mortality by more than 90%. This begs for a new standard of care that would require providers to offer HIV medications as soon as one is diagnosed. Yet that is not the standard anywhere in the United States or anywhere else in the world, notwithstanding a recommendation to that effect last summer by the US Section of the International AIDS Society. In the long run, implementation of this standard would save billions of dollars in treatment cost by prevention of opportunistic infections, but in the short term, it would make ADAP waiting lists soar. So we have yet to see advocates even begin to call for it.
Besides, without real health care reform, not some tinkering at the edges, we are still left in a situation where some 50% of people infected with HIV have no primary care provider…that's in the United States, still, even after the economic crisis, the richest country in the history of the world.
As for services, they continue to be rationed, not along some rational mechanism, but most irrationally based on formulas that were developed nearly two decades ago. But how many people do we hear calling for rethinking Ryan White, perhaps along the lines of an entitlement such as was recommended by the Academy of Medicine report several years ago? No, all of AIDS Inc. has climbed on the band wagon for at least a 3 year reauthorization that would keep the same inequitable distribution of resources because we are all afraid of what we might lose if we made the legislation actually work for people living with the virus instead of the grantees and providers of services.
And housing for every person with HIV who needs it? (See, I told you I would get to the assigned topic!) Let's first talk about housing as treatment. The studies are legion. There is no longer any debate: Housing, especially when coupled with psychosocial case management, dramatically increases engagement in primary care and adherence to medication. It's really that simple. But just to put a point on the argument, this year saw the publication of the results of the first study ever in which homeless persons with chronic medical conditions were randomly assigned housing as the controlled intervention.
Called the Chicago Housing for Health Partnership Study, or CHHP, it looked at some 400 hospitalized homeless individuals with chronic medical conditions, one third of whom had HIV. Two hundred received housing and case management and 200 received customary care, a hospital social worker and generally a shelter referral. The variation was dramatic. Over 18 months, those who were housed had far more primary care visits, much greater adherence to treatment, and dramatically fewer emergency visits, hospitalizations, and nursing home stays. In fact, even when you added in the cost of housing and case management, and the cost of increased primary care visits, those who were housed over 18 months, cost the system over a million dollars less than the people who were left homeless.
Now let's get to housing as prevention. First of all, let's talk about homelessness as a risk factor. Here is what the research shows:
• Rates of HIV infection are 3 times to 16 times higher among persons who are homeless or unstably housed, compared to similar persons with stable housing;
• 3% to 14% of all homeless persons are HIV positive (10 times the rate in the general population); and
• Over time studies show that among persons at high risk for HIV infection due to injecting drug use or risky sex, those without a stable home are more likely than others to become infected.
Moreover, research shows a direct relationship between housing status and risk behaviors among extremely low income HIV+ persons with multiple behavioral issues:
• Homeless or unstably housed persons were 2 to 6 times more likely to use hard drugs, share needles or exchange sex than stably housed persons with the same personal and service use characteristics;
• Homeless youth were 4 to 5 times more likely to engage in high-risk drug use than youth in housing with some adult supervision and over twice as likely to engage in high-risk sex;
• Homeless women were 2 to 4 times as likely to have multiple sex partners as housed indigent women - in part due to the effects of physical violence; and
• Harm reduction and other behavioral prevention interventions are much less effective for participants who lack stable housing.
Finally, overtime studies show a strong association between change in housing status and risk behavior change:
• Over time, persons who improved housing status reduced risk behaviors by half; while persons whose housing status worsened over time were 4 times as likely to exchange sex; and
• Access to housing also increases access to appropriate care and antiretroviral medications which lower viral load, reducing the risk of transmission.
Now, let's take that last point and couple it with what I said about offering ARV's. Imagine what would happen if we were offering housing or rental assistance to every single HIV+ person who needed it, and offering every single person who is HIV+ access to ARV's. Just with those two structural interventions, plus one other, you could bring the epidemic to a screeching halt even before we had a vaccine or a cure. Why, because the vast majority of people who go on ARV's before their immune systems are destroyed and are reasonably adherent…not perfectly, just reasonably…the viral load is reduced to an undetectable level.
What does that mean? Well, it means that particularly in sexual interactions, even without condoms, it becomes very difficult to transmit the virus. We would have dramatically reduced the viral pool, making reliance on changing individual behaviors in moments of passion and ecstasy, whether natural or chemically induced, no longer the principle vehicle for preventing transmission. Couple that with clean needles for IV drug users, Medicaid or insurance-funded hormones for transgender folk, and treatment for HIV+ pregnant women, particularly at time of delivery, and we would have cut off just about every means of viral transmission. Now that is prevention that follows science!
But don't expect it from this Administration, because we will have spent so much money on war in Afghanistan and its neighbors, bailing out the banks, saving Chrysler and General Motors, and tinkering with health care reform, that ending AIDS will just be too expensive and looking at the life-time costs of infections averted will seem too remote and hypothetical.
By the way, earlier I said there was one more piece to the equation. That's ending stigma. As you all probably know, the CDC and a number of states have recommended or adopted policies and legislation calling for universal testing, and to make that more likely, the lifting of laws that require informed consent to be tested. As David Holtgrave at Johns Hopkins University has pointed out, in a study the CDC paid him to do, “what a colossal waste of resources.” Sorry, my paraphrase! We know that the epidemic has really dug its way into certain marginalized populations. Talking about a generalized epidemic is good public relations, but it just isn't true. Even in the District of Columbia, the epidemic is overwhelmingly African American and/or gay. And among African Americans, it is men who have sex with men, IV drug users, and their sexual partners. Hello?
Want to get more people tested? End stigma. And I am not just talking about stigma about HIV. I am talking about homophobia. I am talking about stigma about drug use. I am talking about our prudishness about SEX! How many women in American go every year faithfully putting their feet in the stirrups for their annual pap smear without ever being told that it's a test for a sexually transmitted disease, much less being asked by the gynecologist about their sex life or having it suggested that they should have an anal pap smear too, because some 50 percent of American women have had anal sex, and that's not counting finger play. Hey, guys, I'm not just talking to the gay men now, you ever had anyone stick a finger in your ass? Did anyone ever suggest to you that you might ought to have an anal pap smear for HPV, which just happens to be a precursor to rectal cancer in men and women?
I've got no problem with universal HIV testing every year or six months if the insurance companies want to pay for it, but how about if we just trained medical professionals to have honest conversations with their patients about sex and drug use and then offered the test where indicated? We could then use the money we save the insurance companies to make universal offerings of voluntary testing not just in prison, but in pre-arraignment detention centers, in mental health programs, in shelters for homeless people, in low income communities with high addiction rates and to men who are hooking up with other men. You get my drift.
The point is this: We know what we need to do to end the AIDS pandemic both here in the United States and around the globe. It's not rocket science. It's common sense. The reason we are not doing it is not a lack of resources. It is, plain and simple, we are not doing it because we lack the political will. And that lack of political will is driven by in principal part by homophobia, racism and sexism, coupled with stigma against IV drugs and users, fueled by a misguided fifty-year old war on drugs and on people who use drugs...except alcohol and cigarettes, which are good drugs because we can levy heavy taxes on them and people keep on drinking and smoking.
My friends, President Obama isn't going to change this. At his very best, his is just going to manage at the margins, unless we do something big. And all of our outreach and prevention efforts are going to be like trying to empty the ocean with a sand bucket unless we take seriously our responsibility to build a new and reenergized AIDS activist movement that demands what we need to at long last bring this epidemic to an end.
Some of you are perhaps too young to remember, but here in the home of one of the few remaining active chapters of ACT UP, you should know that nothing that is available for prevention, services, or treatment came about because some politician woke up one morning and said I have a great idea that I am going to put into law today. Everything we have, we owe to brave men and women fighting for their lives, who took to the streets with creativity and flair, going to jail time and time again in non-violent acts of civil disobedience, marching, going on the hill, getting in the face of the news media and anyone else who had influence to demand that our government address that which was killing us.
We desperately need that very same kind of activism today. We need new leaders to rise up, new voices to join the chorus… whether eloquent and rude…to demand, loud and clear, real health care reform that includes access to on-going primary care for every person living in this country. We need to demand universal access and offering of ARV's to every single person who is infected with HIV. We need to demand HIV services, not allocated as a formula based on geography, but as an entitlement of every person who is infected. We need to demand housing, not just for every person living with the virus, but as a basic human right, as recognized in the Declaration of Human Rights decades ago. We need to demand an end of sexism that allows the President to boast that a women's health issue is a lower priority. We need to demand an end to homophobia that leads this Administration to actually argue against equal justice for Queer folk. And we need to demand an end to racism that is really at the core of the war on drugs that has now destroyed more Black families through incarceration than were destroyed in this country through slavery. And finally, we need to demand that we treat AIDS outside the United States with the very same level of commitment to human life and dignity as we treat it here at home.
Let me conclude by quoting Barack Obama, candidate for president of the United States: “I'm asking you to believe,” he said. “Not just in my ability to bring about real change in Washington…I'm asking you to believe in yours.”
“We are the ones we've been waiting for. We are the change that we seek….We are the hope of the future; the answer to the cynics who tell us our house must stand divided; that we cannot come together; that we cannot remake this world as it should be.
Because we know what we have seen and what we believe - that what began as a whisper has now swelled to a chorus that cannot be ignored; that will not be deterred; that will ring out across this land as a hymn that will heal this nation, repair this world, and make this time different than all the rest - Yes. We. Can.”
We Are the Ones We've Been Waiting For: AIDS Advocacy in the Obama Era
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Text from the keynote speech by Charles King, president and CEO of Housing Works, at the 10th Annual Prevention and Outreach Summit in Philadelphia on June 24, 2009.