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AIDS in the White House
by Regan Hofmann
The United States is committed to fighting HIV around the world. But since new data prove that AIDS is far from under control within our own borders, shouldn’t we be as vigilant at home? Just in time for the upcoming presidential election, AIDS activists across the nation are calling for a response to the AIDS crisis in America. When the infection rate in the president’s backyard rivals that of many sub-Saharan African countries, the time has clearly come for a National AIDS Strategy for the United States.
This year, the U.S. Centers for Disease Control and Prevention (CDC) released a startling new set of statistics: The rate of HIV infection in 2006 was 40 percent higher than previously estimated—there were 56,300 cases of HIV instead of 40,000. The number did not indicate a spike in new infections; rather, it reflected what many have suspected for some time—that the AIDS epidemic in America has been underestimated. Every 13 minutes a new person becomes infected with HIV. Infection rates have not fallen in more than a decade. In 2006, 14,000 people died of AIDS.
More than 1 million people live with HIV in America; an estimated 25 percent don’t know they’re living with the virus; a large number of people are diagnosed too late to benefit from early medical care; and half of all those with HIV are not in care at all. It gets worse: Thirty-four percent of all new infections occur in people younger than 30. Women comprised 8 percent of total U.S. infections in ’85. Today, they are 27 percent of the epidemic. Fifty-three percent of newly infected people in ’06 were men who have sex with men (MSM). African Americans represent almost half of all new infections. As we’ve seen all over the world, the virus knows no bounds. It doesn’t discriminate; it affects any—and every—body it can.
It’s clear we are failing to prevent new cases of a disease that is for the most part, preventable. These new HIV infection rates, coupled with treatment advances that keep people alive longer, mean that more HIV-positive people live in the United States than ever before. Yet, funding for HIV/AIDS care and treatment is at an all-time low. A mere 4 percent of the $23 billion spent on HIV/AIDS in the United States last year was allocated for prevention; flatlined funding at the National Institutes of Heath resulted in an 18 percent drop in that agency’s ability to fund scientific development. Wonder why we have no cure yet?
While we are clearly doing a subpar job battling HIV on U.S. soil (activists at the XVII International AIDS Conference marched to protest our government’s response, carrying giant report cards with big Fs on them), our nation recognizes the danger of allowing the global pandemic to go unchecked; case in point, President George W. Bush’s President’s Emergency Plan for AIDS Relief (PEPFAR) and its whopping $48 billion price tag. The justification for such bankrolling? Humanitarian for sure, but also a need to invest in the future of the world’s workforce—the same workforce that arguably supports the U.S. economy. If entire foreign generations go unsaved from AIDS, who will make our sneakers and solar panels? AIDS has officially affected enough people that it ranks alongside issues like sky-high fuel costs and planetary warming as a threat to the stability of the global economy.
When doling out dollars, the U.S. federal government requires that recipient countries submit their National AIDS Strategies to prove that the money will be well wielded. To date, we have no official, let alone unified, vision of how we will stop AIDS in America. Last time we checked, there were 30 HIV/AIDS programs in six different departments of government with more than 20 agencies focusing on HIV/AIDS—all working without a coordinated strategy and with no distinct measures of efficacy.
In response to our nation’s pell-mell approach to fighting AIDS, 293 (and counting) of the most prominent local, state and national HIV/AIDS organizations and more than 1,000 individual activists have formed a coalition that has formally requested a National AIDS Strategy (see nationalaidsstrategy.org for the complete list and to add your name or that of your organization). Ask any policy pro and he or she will say the same thing: To effectively fight AIDS, we need the coordinated efforts of people living with HIV/AIDS, key people from groups at particularly high risk, public health leaders (both governmental and public sector), researchers, health care providers and representatives from faith-based, civil-rights, business and other communities.
Our government is starting to wake up. On July 17, 2008, 220 years and 10 months after the signing of the U.S. Constitution, which called for “justice, domestic tranquility, common defense, general welfare, posterity and the blessings of liberty for the American people”—the Senate Appropriations Committee approved a $1.4 million budget to develop a National AIDS Strategy within the White House Office of National AIDS Policy. Could such a strategy bring the aforementioned core American ideals to bear on the community of people living with HIV? Could it prevent more people from joining that community?
It’s a good start. A new president would help, too. (Luckily, we’re about to get one of those.) Here’s hoping the new resident at 1600 Pennsylvania Avenue in Washington, DC, will notice something that President George W. Bush did not: One in 20 of DC’s residents—the president’s immediate neighbors—is living with HIV. In addition, 45 percent of all new infections are among African Americans. As the Black AIDS Institute points out, these groups have higher rates of infections than half of the 15 target countries that receive PEPFAR funds. If the HIV-positive people in DC were in Africa, we would fund their survival—and demand a plan of attack to do so. But they are here. America should not stop helping the rest of the world fight AIDS. We shouldn’t recall a single penny of PEPFAR. But we could learn a thing or two from our international neighbors (and the crew that created PEPFAR) about how to stage an attack against AIDS—at home. Hopefully, our new president will take a cue from our founding fathers—and the Denver Principles, the defining manifesto of People With AIDS—and ensure that future generations of Americans live HIV free.
THE FIRST 100 DAYS
Historically, a president’s first three months set the tenor for his time in the Oval Office. Some presidents have been bold, others cautious. Given the dire state of AIDS in America and the goodwill that often presides over a president’s initial grace period, it is a necessity that our next commander in chief step up aggressively against HIV. Political leadership at the highest level has long proved one of the most effective tools in the fight against AIDS. The president’s personal desire to recognize and stand against the disease in America has a potentially profound effect on how our nation views the disease. Barack Obama has publicly committed to developing and implementing a National AIDS Strategy; John McCain has not. Regardless of who wins, we at POZ have decided to go one step further than merely advocate for a National AIDS Strategy—we decided to tell the incoming president what this nation needs from him during his first 100 days in office. The following are the top seven steps we’d like our next president to take to battle the domestic AIDS crisis—ASAP.
As for you, we hope you will agree with our suggestions and continue to do your part to advocate on behalf of them at local, state and federal levels. One thing to put on your schedule: AIDS Watch 2009. In April, the National Association of People with AIDS (NAPWA) leads the HIV-positive community to Capitol Hill to meet face-to-face with lawmakers to discuss how they can help us achieve life, liberty and the pursuit of happiness, despite HIV. (Turn to our back page to learn more about joining NAPWA.) See you on Capitol Hill.
STEP ONE: Fight Stigma, Discrimination and the Criminalization of People Living With HIV
Fear of stigma and discrimination is a deadly barrier to care that prevents people from accessing lifesaving health services. Stigma around HIV leads to an unwillingness to discuss the disease—and that hampers awareness and education. It keeps people isolated, without support and driven to despair when they should seek care and encouragement to survive the disease. Passing the federal Employment Non-Discrimination Act (ENDA), which prohibits workplace discrimination on the basis of sexual orientation and gender identity, would provide some protection against certain types of discrimination, but in its latest iteration, ENDA omitted clauses that would ensure equal rights for transgender people.
Step one of removing the U.S. travel ban for HIV-positive immigrants and travelers happened in July when the PEPFAR bill passed. But as we go to press, HIV remains on the Department of Health and Human Services’ list of “communicable diseases” and therefore is still potentially grounds for keeping HIV-positive people from entering the United States.
Criminalization of HIV-positive people is on the rise, and the ensuing media coverage perpetuates the myth of the “AIDS predator.” The truth is, most HIV-positive people wouldn’t wish HIV on their worst enemies and go to great lengths to protect their partners.
It’s time that more laws were passed to prevent the discrimination and criminalization of HIV-positive people. And will someone please tell the mass media once and for all that you don’t get HIV from being spit on?
STEP TWO: Reduce Disparities in the Epidemic That Are Based on Race, Ethnicity, Gender, Geography, Socioeconomic Standing and Sexual Orientation
African Americans represent 13 percent of the U.S. population, but they represent 45 percent of new AIDS cases reported in 2006. Latinos/ Hispanics comprise about 15.3 percent of the population in the United States and Puerto Rico but account for 19 percent of people living with AIDS and 25 percent of HIV diagnoses since the beginning of the epidemic and 20 percent of all new infections. The percentage of new infections among women has tripled since 1985 to 27 percent, and AIDS is the leading cause of death among black women ages 25 to 34. HIV/AIDS is the No. 1 health care risk for gay men. Of the 15 states with the highest rate of HIV infection, nine (60 percent) are south of the Mason-Dixon Line. Southern states comprise 65 percent of all AIDS cases among rural populations.
On many fronts, the particulars of race, gender, geography, income level and sexual orientation play powerfully into a person’s risk for HIV. Throw in the accompanying lack of empowerment and low self-esteem that some people face as a result of their race or nationality, their gender identity and/or sexual orientation, and you have a real maelstrom of increased risk. Protecting people and teaching people to protect themselves, helps reduce the rate of HIV infection and improve the likelihood of people accessing care and staying on treatment, if warranted. Everyone, everywhere—black, white, brown, male, female, transgender, rich, poor, gay, straight, bisexual, regardless of where they live—should have equal access to information, care and services to prevent and treat HIV.
STEP THREE: Identify Evidence-Based Prevention Tactics That Work, and Tailor Them to Individual Audiences
It is time that science inform policy. Politicians have too often ignored science in the name of getting re-elected. Since President Clinton famously disregarded the overwhelming scientific evidence that needle-exchange is a successful form of harm reduction, we have seen the federal administration put politics before public health. It has been well established that an “abstinence-only-until-marriage” approach to sex education is deadly to our nation’s youth; one in four teenage girls has at least one sexually transmitted infection (and they didn’t even screen the study participants for HIV!), and 34 percent of new HIV infections are among people younger than 30. We must remove the federal funding ban on comprehensive sex education and look again at the ways that syringe exchange as well as substitution therapy can prevent the spread of HIV.
We need better mechanisms for HIV testing—and counseling. We bet more people would get tested if we could assure them that they’d receive care if they test positive. (By the way, one of the presidential candidates—Obama—has been publicly tested for HIV. We need more prominent politicians to do the same.)
We must continue researching microbicides by supporting the Microbicidal Development Act. We need to have a better understanding of the behavioral issues that cause people to put themselves at risk for HIV despite awareness of the disease and access to condoms, and we need to tailor messaging to various audiences so that it resonates and changes behavior. We need to continue the discussion about treatment as prevention but realize that prevention among HIV-positive people alone will not keep the pandemic in check.
STEP FOUR: Help the Homeless
The link between homelessness and an increased risk for contracting HIV is real. As many as 60 percent of people living with HIV have been homeless at some point since their diagnosis because of stigma and rising housing costs. Housing subsidies for the federally funded Ryan White CARE Act comprise just 1.45 percent of the total Ryan White budget. Due to recent funding cuts, an increasing number of positive people have been turned out on the streets. Legislators are starting to listen to research that establishes the link between safe and secure housing and a positive person’s ability to maintain his or her health and comply with treatment protocols. It’s not about giving positive people a free home at great cost to taxpayers; it’s about giving positive people a safe haven in which to heal. Increasing funds for Housing Opportunities for People With AIDS (HOPWA) would ensure that more HIV positive people have a home sweet home.
STEP FIVE: Improve Access to Care for All Americans
The Early Treatment for HIV/AIDS Act (ETHA) advocates for people to get access to care sooner. We now know that the earlier people find out that they’re HIV positive, the better choices they can make about lifesaving care and treatment. Knowing your status is key to survival. Being able to pay for your pills is another.
We need to eliminate the doughnut hole between AIDS Drug Assistance Programs (ADAP) coverage and Medicare Part D coverage so that people do not have to worry about affording treatment. We need to increase funding levels for all programs designed to provide care and treatment to the HIV community, including the once-almighty Ryan White CARE Act, so that people will know that if they test positive they can seek help. Assuring the public that a positive HIV test result can lead to care might encourage people to get tested for HIV regularly. New studies show that people who are diagnosed earlier in the course of disease progression and then access care earlier live longer and are better able to stay functional and self-supporting. Nearly four people out of 10 who tested positive in 2004 were diagnosed with AIDS fewer than 12 months later. Today, there is no excuse for people to receive a diagnosis of HIV and AIDS together.
STEP SIX: Break the Chains
The United States incarcerates more people than any other nation on earth. There is a myth that many people get HIV in prison. Certainly, the inability of jails and prisons to distribute prevention information and condoms contributes to the disease’s spread on the inside. But many more people also discover they are HIV positive while incarcerated. Getting care on the inside is challenging in many prisons, to say the least. Getting regular lab work done to see whether your meds are working and/or whether they are causing adverse side effects is even more challenging. Even getting access to meds can be difficult. What’s more, the poor nutrition offered in many prisons can acerbate the drugs’ side effects, making them difficult to take, therefore making compliance an issue. But what happens when people get out? Often they are without medication, health insurance, a doctor, a job or a home. And what happens to communities and family members left behind, when people get locked up? The cycle of incarceration without regard for the effect on the spread of HIV is a major contributing factor to the American AIDS epidemic.
STEP SEVEN: Spend More Money on Research and the Hunt for the Cure
In the last year, we saw the failure of several key clinical trials for vaccines and microbicides. While vaccines and microbicides could positively impact prevention, they are not the answers to our prayers. There is some hope for a vaccine that will mitigate the effects of HIV in those already positive. And while we are really grateful for the ongoing advances in treatment that make popping our pills logistically easier and more tolerable, what we really want is to be done with AIDS once and for all. So fund the independent research labs that have a vested interest in banishing this virus from our blood—for eternity.
We asked you about the impact of your vote and your hopes for the next president. Here are some of your responses:
“It’s a fools game no matter how one looks at it. Our vote counts for nothing; it’s the Electoral College that seats a president, so how we vote is a sick joke. Bush has shown just how much America cares about those of us living with HIV/AIDS within the country, those of us who have paid taxes all our lives. Just don’t get sick enough to need assistance or you’ll quickly find out what living below the poverty level is like-—no matter how well funded you think you are.”
San Jose, California
“The president and Congress need to work together [to make] sure treatment is reaching all rural areas of America. World AIDS relief should receive limited funding until all the Southern rural areas of the United States receive HIV prevention and care equivalent to larger cities, without those citizens having to travel hundreds of miles just to see an infectious disease specialist.”
“I hope the next president can stop discrimination against [gay] people. I lost my Pennsylvania Department of Labor and Industry state job for complaining about no access to the established appeal processes for my supervisor’s public harassment to ‘straighten up, get back with the Roman Catholic church and get married’ and ‘not touch other people because I might have “the AIDS.”’ It helps [that] another PA L&I department, the Bureau of Workers’ Compensation, replaced my wages lost since 1988 due to L&Is ‘abnormal working conditions.’”
“I really hope that Barack Obama steps up to the plate and plans to contribute more government money to help combat the disease. It would be wonderful if he gave more money to researchers so they can possibly find a cure. It would help all HIV-positive people live a more comfortable life. My philosophy is the drug companies don’t want a cure because then they wouldn’t make millions on the medicines that we take to keep the disease in check. We are Americans, and we need to stand up and fight for the right presidential candidate who will do more to combat this growing epidemic in the United States.”
Both leading presidential candidates made statements in response to the CDC’s announcement of the new rate of HIV incidence in America.
Senator Obama said:
“These new figures should bring new focus to our efforts to address AIDS and HIV here at home. As president, I am committed to developing a National AIDS Strategy to decrease new HIV infections and improve health outcomes for Americans living with HIV/AIDS. Across the nation, we also need to prevent the spread of HIV and get people into treatment by expanding access to testing and comprehensive education programs. This report also demonstrates the need for more timely data about HIV transmission so that we can effectively evaluate prevention efforts. Combating HIV/AIDS also demands closing the gaps in opportunity that exist in our society so that we can strengthen our public health. We must also overcome the stigma that surrounds HIV/AIDS—a stigma that is too often tied to homophobia. We need to encourage folks to get tested and accelerate HIV/AIDS research toward an effective cure because we have a moral obligation to join together to meet this challenge, and to do so with the urgency this epidemic demands.”
Senator McCain said:
“More than a million Americans live with this devastating disease. As president, I will work closely with non-profit, government and private sector stakeholders to continue the fight against HIV/AIDS. By focusing efforts on reducing drug costs through greater market competition, promoting prevention efforts, encouraging testing, targeting communities with high infection rates, strengthening research and reducing disparities through effective public outreach, we as a nation can make great progress in fighting HIV/AIDS.”
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