SAXTONS RIVER — Living with AIDS in this country, writes AIDS activist and author Vito Russo, “is like living through a war which is happening only for those people who happen to be in the trenches. Every time a shell explodes, you look around and you discover that you've lost more of your friends, but nobody else notices. It isn't happening to them.”
Russo made that statement about the HIV/AIDS epidemic that began in the 1980s long after the Stonewall uprising in 1969 led to the international gay rights movement. The quote still appears on the website of ACT UP (AIDS Coalition to Unleash Power), which Russo helped to found before he died of complications of the disease in 1990 at age 44.
The quote is particularly relevant now in light of Donald Trump's shutting down the Presidential Advisory Council on HIV/AIDS.
The council, comprised of physicians, industry, and community members, as well as of people living with the disease, was set up in 1995 to make national recommendations regarding the treatment of HIV/AIDS so that health officials could respond appropriately to the epidemic.
Last June, six members of the council resigned out of frustration with the president's health-care policies. The remaining members were dismissed with immediate effect in December in a letter from the White House.
The demise of the council, along with Trump's wish for a disastrous American Health Care Act, adds to a crisis that could leave more than 1 million Americans with HIV/AIDS without access to appropriate treatment, departing council members reported in despair.
They also called out the president for his failure to appoint a director of the Office of National AIDS Policy, a position created by the Clinton administration.
Additionally, the president wants to cut HIV/AIDS program funding by $150 million in this year's fiscal budget, along with cutting global projects that fight AIDS and other diseases.
What does this mean for people living with HIV/AIDS, 15 percent of whom in the U.S. don't even know yet that they are HIV positive?
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Ed Sparan, Operations Manager of the World AIDS Museum and Educational Center in Fort Lauderdale, Fla., points out that nothing has really changed since the days of Ronald Reagan when, as president, he took seven years to just mention HIV/AIDS, despite the fact that “36,058 Americans had been diagnosed with AIDS and 20,849 had died” from the disease, which had by then “spread to 113 countries, with more than 50,000 cases,” according to the San Fransisco Chronicle.
“There's still no help,” Sparan says, “and funding is being cut left and right. It's getting harder and harder to fundraise, and we're scared about what's happening.”
“The people in the White House,” he adds, “live in a fish bowl; they are not on the streets. The Council was the only way to get to them. Now there is no one to advocate for us. Instead, there is an invisible wall against us.”
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According to statistics from the Foundation for AIDS Research, in the United States, more than 1.2 million people are currently living with HIV. Between 1981 and 2013, nearly 1.2 million people in the U.S. were diagnosed with AIDS.
In 2014, the most recent year that mortality data was available, there were 12,333 deaths (due to any cause) of people diagnosed with HIV infection. Of that number, 6,721 deaths were directly attributed to HIV.
In 2016, there were more than 39,000 new HIV diagnoses and more than 18,000 people were diagnosed with AIDS.
Globally, HIV continues to be a major public-health issue. In 2016, an estimated 36.7 million people were living with the infection, including nearly two million children. That same year, one million people died of AIDS-related illnesses.
The infection is most prevalent in sub-Saharan Africa, where an estimated 25.5 million people have HIV. Experts say there is much more that needs to be done to improve knowledge of HIV and HIV testing in vulnerable areas and among adolescents and young adults, given the high risk, especially to women between the ages of 15 and 24.
Despite progress made in lowering the rate of infection in nearly 70 countries, the Joint United Nations Programme on HIV/AIDS has warned that the progress in combating viral transmission is not happening fast enough, especially in Eastern Europe and Central Asia, where infection rates have climbed by 60 percent since 2010.
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There is some good news. Since 2016, 53 percent of all people living with HIV now have access to lifesaving treatment and almost 20 million people living with HIV are receiving antiretroviral treatment. If that level continues, it is estimated that the world will meet its global target of 30 million people in treatment by 2020.
That hope should not diminish the urgency of recognizing the continuing epidemic of HIV/AIDS here and abroad. The need for timely diagnosis, appropriate treatment, and continued education and advocacy are all vital components in addressing and containing this ongoing public-health crisis.
President Trump's decision to end the Presidential Advisory Council on HIV/AIDS - as well as his attempts to defund further research, education, and global-health programs - speaks volumes about his grasp of the issue, his ignorance on health matters, and his disdain for those who live with HIV/AIDS.
In light of his hideous recent statement about certain countries, it should not be lost on anyone that so many HIV/AIDS patients inhabit the continent of Africa and the country of Haiti.