“I never dreamed this would be possible”: Working toward a world without AIDS
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For an entire year in the early 1980s, Mark Milano battled an array of perplexing and recurrent flu-like symptoms and illnesses: sore throats, vomiting, pneumonia.
“It was just one thing after another,” Milano recalled. “When they told me there was nothing wrong with me, I said, ‘But why am I sick all the time? I am only 26.’”
On one last visit to the emergency room in 1982, the head doctor asked the other residents to leave the room. He closed the door and said to Milano: “Can I ask your sexual preference?” Milano told him he was gay.
“He got very serious and told me about this illness that they were seeing in gay men,” he said.
Milano was soon diagnosed with what was then called acquired immunodeficiency disease or gay-related immunodeficiency, a baffling new illness that attacked the immune system and for which there was no treatment. At first, he was relieved to know what was wrong with him, but said he “quickly learned I should be quiet about it.”
Over the next two decades in the U.S., nearly 800,000 individuals were diagnosed with AIDS, a term the Centers for Disease Control and Prevention first used in September 1982. The panic and fear in the early days of the HIV/AIDS crisis, when those unlucky enough to contract the virus were ignored, shunned and excoriated for what some considered immoral sexual practices, is a dark time Milano remembers vividly.
“The 1980s was a very bleak period,” said Milano, who now works at the ACRIA Center at the Gay Men’s Health Crisis in New York City, the first community-based AIDS service provider in the U.S.
By 1987, Milano had given up his career as a film and video editor and moved to New York City, where he joined the AIDS Coalition to Unleash Power. By 1992, he came out to relatives — about both his sexuality and HIV status.
Since his diagnosis, Milano has been ravaged by illnesses and conditions like anal cancer and kidney damage, but has survived thanks to the advent of new HIV medications. A new generation of antiretroviral drugs that suppress the virus and prevent transmission to others, but don’t cure it, has turned the tide in the decades-long fight to end the pandemic, one that affects nearly 37 million people worldwide.
Now, the medical and international community are looking towards the next step in wiping out the disease for good.
In all likelihood, Milano will be alive in 2030, the year the United Nations has audaciously declared that HIV and AIDS will be virtually eliminated worldwide via strategic moves for prevention and treatment. The Joint United Nations Programme on HIV/AIDS’ 90-90-90 initiative also pledges that by 2020, 90% of all people living with HIV will know their viral status; 90% of all people who have been diagnosed with HIV will receive “sustained” antiretroviral therapy; and 90% of those receiving that therapy will have viral suppression.
“Whereas previous AIDS targets sought to achieve incremental progress in the response, the aim in the post-2015 era is nothing less than the end of the AIDS epidemic by 2030,” the UNAIDS strategy declares.
“I never dreamed this would be possible,” said Milano, whose HIV has been undetectable for over a decade. “The idea that HIV was so easily controllable is something we couldn’t have imagined. The idea of taking a pill once a day with almost no side effects was a pipe dream.”
The 90-90-90 campaign calls for a multi-pronged international effort that includes not only strong community systems, but also the “protection and promotion” of human rights. That will require simpler and more affordable diagnostic tools and treatments that are better tolerated, perhaps not even requiring daily use.
From a crisis to a relic of the past
HIV and AIDS first came to the attention of the CDC in 1981, when five young men were diagnosed with a rare strain of pneumonia. Soon after, several cases of the virulent cancer Karposi’s sarcoma were reported among gay men in both New York and California. A total of 270 men had been diagnosed with “severe immune deficiency” by the end of that year, and 121 of them had died.
In 1984, the National Cancer Institute announced it had found the cause of AIDS: the retrovirus HTLV-III, now known as HIV. A diagnostic blood test to detect HIV antibodies was licensed the following year. The first treatment emerged in 1987, when the U.S. Food and Drug Administration approved the antiretroviral drug zidovudine, commonly known as AZT.
The number of AIDS cases had surged to nearly 500,000 by 1995, when the FDA approved the first highly active antiretroviral therapies, which stopped the virus from multiplying in the body and helped make HIV a chronic but manageable illness.
The most revolutionary of all new therapies came in 2012 with the pre-exposure prophylactic drug Truvada, which not only suppresses the virus in HIV-positive individuals but also reduces the risk of transmitting the disease to others. The combination pill is the only drug currently approved for PrEP.
And it’s a combination of these newer antiretroviral drugs that has made the U.N. plan possible. Milano, who is unable to benefit from Truvada because of prior kidney damage, has been kept alive by a “multitude” of antiretroviral drugs since 2007. Over the years, however, he saw many of his friends die of the disease.
For years, Milano envisioned a world where HIV and AIDS were not a fact of life. Now, with the 90-90-90 campaign’s ambitious goals for eradicating the disease, AIDS could also become a relic of the past.
Though an AIDS diagnosis is no longer the death sentence it was 25 years ago, more than 1.1 million Americans are still HIV-positive, according to the CDC. Of the 39,782 people diagnosed with HIV in 2016, 19% were women and 44% were African-American. Gay and bisexual men, however, continue to be disproportionately affected by the disease.
Overall, HIV infections are on the decline due to prevention efforts and the combination use of modern antiretroviral drugs, with the number of new diagnoses among all populations dropping by 10% between 2010 and 2014. However, new diagnoses among black gay and bisexual men increased by 4% from 2011 to 2015, while Hispanic gay and bisexual men saw a 14% increase in infections over the same time period.
Still, U.N. health officials say that with good prevention, treatment and care policies, it will be possible to eliminate HIV and AIDS by 2030.
“It doesn’t mean eradication, like small pox — that no one on the planet is infected,” said Dr. William Schaffner, a infectious disease specialist at Vanderbilt University School of Medicine. “But we already have the powerful impact of treatment, and if we could get it out to more and more people, we could reduce it profoundly.”
By 2030, a vaccine might also be available, Schaffner said. This could be part of a child’s overall immunization plan, in the same way public health campaigns wiped out the polio epidemic of the 40s and 50s. “We have that capacity,” he said.
“The vaccine doesn’t have to be perfect,” Schaffner adds. “But it could be safe, give reasonably long-term protection and be reasonably inexpensive. It’s a matter of determination.”
In the meantime, many robust prevention programs that have been put in place for the last three decades to fight HIV/AIDS could now provide pathways to cure other sexually transmitted diseases, like Ebola and Zika.
“We have learned things about documenting research more quickly, and fast-tracking drugs,” said Arthur L. Caplan, founding head of the Division of Medical Ethics at NYU School of Medicine in New York City. “We learned how to conduct vaccine trials for herpes and other infectious diseases. We’ve also learned not to panic. Our response to Zika was not as crazy [as the response to AIDS].”
Ripple effects and unintended results
A future with vastly reduced HIV infections could have major effects in other, less immediately obvious areas.
Because HIV/AIDS is no longer considered a gay man’s disease, the U.N.’s plan would be “huge — especially for women,” said Ingrid Floyd, executive director of New York City’s Iris House, which supports and empowers women and children with health-related issues like HIV/AIDS.
Until the 1990s, women infected with HIV were largely ignored by the medical community. Today, 19% of newly diagnosed cases are women, according to the CDC. And 87% of them were infected through heterosexual relations.
Although the infection rate is down 20% among black women, they are still disproportionately affected. More than 4,500 black women were newly diagnosed in 2016, compared to just under 1,500 white women and slightly more than 1,000 Latina women.
In a perfect world, poverty, homelessness, mental illness and other issues would also be funded and addressed, too — especially in communities of color, Floyd said.
“As long as the U.N. focuses on these social determinants of health, as well as HIV infections,” Floyd said she sees a bright future.
Most women who are HIV-positive are in monogamous relationships and have contracted the virus because their partners have had sex with infected drug users or an HIV-positive person, she said. In a world without such fear of infection, women will be able to be sexually responsible, but also “more sexually free.”
Elsewhere, a world without, or with massively reduced, HIV infections could have some major effects. Restrictions in sperm and blood donation would ease, while money would be saved on high-priced testing for HIV. More people might be encouraged to enter the fields of dentistry and nursing, where exposure to HIV had been a job risk. And homophobia on sports teams could diminish if athletes are no longer worried about injuries and blood exposure.
Yet the end of HIV/AIDS could have some unintended consequences. Will safe sex no longer be a priority? Will that fuel the spread of other sexually transmitted diseases? Despite today’s public health campaigns, diseases like gonorrhea and syphilis are on the rise, which concerns infectious disease specialists like Schaffner.
By 2030, HIV/AIDS may not be the biggest health threat — rather, within an increasingly global culture, it will likely be antibiotic resistance, especially to gonorrhea, staph and gram-negative bacteria like E. coli, Salmonella, Shigella and others that may become a larger problem.
“The globalization of the world is going to continue and accelerate,” Schaffner said. “Emerging infectious diseases like Ebola and MRSA [an infection caused by a type of staph bacteria] are going to be introduced into the developing world. There will be many infections we’ll have great difficulty treating,” he said.
Many, including Milano, agree the greatest challenge is not eliminating HIV/AIDS, but removing the persistent stigma and homophobia that surround the disease.
“Homophobia was, and still is, a fact of life,” he said, remembering a time when he was “making out” with a boyfriend on the street before saying goodbye for the night. “We heard a lot of comments like, ‘faggots,’ ‘that’s gross,’ and ‘don’t do that here.’”
Some studies show that exposure to homophobia is associated with substance abuse and risky sex, which put people at further risk for STIs and STDs. Other research suggests stigma interferes with maintaining monogamous relationships, which can be a protective factor for both STIs and STDs. A drastic reduction over the next decade in HIV/AIDS will lead to more truthfulness, and willingness for people to come out, bioethicist Caplan said.
“There will be more frankness with doctors,” he said.
Stephen T. Russell, a sociologist at the University of Texas at Austin who studies LGBTQ youth, agrees with this notion, saying the elimination of HIV/AIDS “will be an amazing moment of health liberation for many people.”
“I am by nature a relentless optimist,” he said. “But I am worried about overly optimistic ideas about the end of stigma. Our research is showing that rather than getting better, disparities based on sexual identity are actually getting wider for youth over the last decade.”
Compared with other students, LGBTQ youth are at greater risk for violence, including bullying, teasing and assault, according to the CDC. Rates of suicide and homelessness are also higher.
Milano knows first-hand what the struggle for dignity has cost those living as gay men with HIV/AIDS.
Today, at 62, Milano is still an activist, devoting his life to helping others with HIV and AIDS. Throughout his years of direct action, he helped get cheaper, generic HIV drugs to South Africa, which became the epicenter of the global pandemic. In 1997, South Africa passed a “Medicines Act,” authorizing the importation of cheaper versions of HIV drugs, and a consortium of nations, including the United States, blocked this new law. The big pharmaceutical companies held patents on these drugs, which cost up to $10,000 a year.
Milano and activists from ACT Up also appeared at a rally in Tennessee to target then-Vice President Al Gore, who was also chair of the U.S.-South Africa Bi-National Commission. They accused Gore of ties to the drug companies and supporting trade sanctions against South Africa. The event was highly publicized, and Gore later changed his position. In 2000, President Bill Clinton reversed U.S. trade policies and began exporting cheaper drugs to 15 developing nations, as well as South Africa. When Clinton left office and became involved in the fight against AIDS, drug costs were lowered to about $130 a year in poorer countries. In 2003, President George W. Bush initiated the Emergency Plan for AIDS Relief program, which saved millions of lives in Africa, and will likely serve as the model for the U.N. initiative.
Today, Milano tries to stay fit by lifting weights and maintaining an active social life. “I wouldn’t describe myself as healthy,” he said. “I have a number of comorbidities that require constant doctor visits and a multitude of pills. Still, I’m not bedridden or disabled.”
“Life goes on,” he said. With willpower and focused action, anything is possible, he said — from reducing HIV to eliminating the scourge of homophobia.
“My activism taught me that doing the right kind of action at the right time, you can really change the world,” he said. “If we commit ourselves to it, we can do it. It’s just a matter of having the will to make it happen.”