National HIV Testing Day: A Time to Empower Yourself and Get Tested

The following post comes to us via Ava Budavari-Glenn, a political communications major and a nonprofit communications minor who is entering her sophomore year at Emerson College. She is a writer whose work focuses mainly on advocacy, and a community organizer who has worked for nonprofit organizations and political campaigns. She is a media and communications intern at Planned Parenthood Advocates of Arizona.

It was the 1980s. All of a sudden, seemingly out of nowhere, thousands and thousands of people were dying from an illness that had never been seen before. The diagnosis was a death sentence. As soon as you had it, you would die painfully and quickly. The disease was AIDS, caused by a virus called HIV.

In the United States, this disease ravaged the LGBTQ community; gay and bisexual men were the hardest hit. The Reagan administration failed to acknowledge the disease, until Ronald Reagan’s press secretary laughed about it and called it the “gay plague.” Tired of the government’s inaction, the people decided to take matters into their own hands and formed the grassroots organization ACT UP (AIDS Coalition to Unleash Power) in 1987.


With modern medical treatment, people with HIV can live pretty normal lives.


They protested, made targeted demands, and created poster campaigns. They formed a network of community organizers in cities across the country, and employed radical protest strategies, such as the AIDS Memorial Quilt, which covered the National Mall with names of people who had died from the disease. They focused their targeted efforts on specific politicians, as well as the Food and Drug Administration and the Centers for Disease Control and Prevention. They did such an extensive amount of research that the activists essentially became scientists themselves. They were able to lower drug prices and get the FDA to approve experimental drugs for HIV at a quicker pace. They educated, diminished social stigma, and perhaps most important, supported medical advances that reduced AIDS-related deaths.

And finally, in 1996, scientists discovered the treatment that turned HIV from a death sentence to a chronic illness. Finally, after 15 years of tragic deaths, obsessive scientific research, and fiery activism, patients could live long and happy lives with a drug “cocktail” that could suppress the virus. Continue reading

STD Awareness: Can HIV Be Cured Now?

In 1991, when Timothy Ray Brown was in his 20s, he moved from the United States to Europe in search of adventure. His travels brought him to Berlin, where he put down roots and became a translator — but this newfound stability was quickly disrupted. A former boyfriend told him he had been diagnosed with HIV, the virus that causes AIDS, and suggested Brown be tested as well. The results were positive. Brown calculated he had about two more years left to live.

His fortunes changed the next year when antiretroviral drugs transformed HIV from a death sentence to a manageable chronic disease. Life went on. But 10 years later, in 2006, he started noticing changes. While he usually made a 14-mile round trip on his bike to and from work, a quick ride to a café one mile away left him so winded he had to stop halfway through.


We still don’t have an HIV cure that works for everyone.


He was diagnosed with leukemia, a type of cancer that affects certain types of blood cells. He immediately began chemotherapy, a taxing regimen that nearly killed him when an infection forced his doctors to induce a coma. And when the cancer came back, his doctors recommended a bone marrow transplant, which involved wiping out his immune system with drugs and radiation. A year later, after his leukemia came back, he received a second bone marrow transplant. Recovery was grueling. He descended into delirium, nearly went blind, and was temporarily paralyzed. He had to undergo physical therapy to relearn how to walk and talk.

Miraculously, he came out of this near-death experience in full remission from leukemia. But the bone marrow transplants hadn’t just gotten rid of his leukemia. They had gotten rid of his HIV infection, too. The media dubbed him the “Berlin patient.” Continue reading

STD Awareness: The HIV Epidemic at Home

In the United States, we understand HIV — the virus that causes AIDS — using a common narrative, one that gives us the impression that its deadliest chapters belong in decades past or distant places. It goes like this:

The disease emerged in the 1980s, cutting down young gay men in their primes and blindsiding scientists as they scrambled to unravel the virus’ mysteries. While AIDS initially whipped up mass hysteria among the general public, LGBTQ folks demanded equality, pushing to find treatments and a cure. AIDS activism and scientific research eventually led to the development of antiretroviral drugs, which tamed the plague by turning a death sentence into a chronic disease. Now, with the right medication, people with HIV can live long, healthy lives. The hysteria has died down, as most people realize viral transmission is preventable, and the infection is manageable.

One thing hasn’t changed, however: Just as it was in the 1980s, AIDS is still thought of as a disease of the “other.” Back then, it was a disease of gay men, a population cruelly marginalized by the general public. Today, it’s thought of as a disease of sub-Saharan Africa, where HIV prevalence is highest.

That narrative, however, doesn’t tell the whole story. Right here in our own backyards, the HIV epidemic continues to spread in the face of chilling indifference from those not affected. African-American MSM — men who have sex with men, who may or may not self-identify as gay or bisexual — have an HIV prevalence that exceeds that of any country in the world. In Swaziland, for example, 27 percent of adults are living with HIV/AIDS, but if current transmission rates hold steady, half of African-American MSM are projected to be diagnosed with HIV in their lifetime. Instead of taking this projection as a wake-up call to invest in lifesaving health policies, however, state and federal responses are poised to let it become a self-fulfilling prophecy.

Contrary to racist and homophobic stereotypes, data show that black MSM aren’t more likely to engage in risky sexual behavior, use drugs and alcohol, or withhold their HIV status from partners. So why are they burdened with higher HIV rates? The answer lies beyond mere behavior, embedded in policies and practices that disproportionately harm people based on race, sexuality, and geography. Continue reading

Some Good News About Three Sexually Transmitted Viruses

Scientists are hard at work finding ways to improve your health!

With so much bad news emblazoned across headlines in every newspaper you look at, the world might seem like a gloomy place. So let’s take one depressing subject — disease — and peel away the sad outer layer to find silver linings of optimism.

When it comes to infections, a lot of us blame one thing: germs, also known as “bugs” — “pathogens” if we’re fancy. Some people might not think of infectious diseases as being that big of a deal — after a round of antibiotics, you’ll be on the mend. Unfortunately, antibiotics only work for bacteria, but a lot of diseases are caused by other types of germs — for which antibiotics are no match. One type of germ is called a virus, and they can’t be cured. Sometimes they can be prevented with vaccines or treated with drugs. For example, the major strains of human papillomavirus (HPV) can be prevented with a vaccine called Gardasil, herpes simplex virus can be suppressed with antiviral drugs, and HIV can be controlled with antiretroviral drugs — but none of these infections can be cured. HPV is usually defeated by the immune system, but herpes and HIV are with you for life.

But it’s not all bad. Around the world, individual scientists have picked their “favorite” viruses and are devoting their lives to finding better prevention strategies, better treatments, and even cures. Let’s check in with some of the latest headlines touting the successes of science.

New Hope for a Herpes Vaccine

A herpes vaccine would be a blockbuster — given how common this sexually transmitted infection is, a preventive shot could help a lot of couples discuss their herpes status without as much fear of judgment and stigma.

Herpes might cause an “outbreak” — unpleasant symptoms that include genital sores — but afterward the virus goes dormant in the nerve cells, hiding from the immune system. In some people, the virus can come out of its dormancy to cause flare-ups of symptoms, but once it’s had its fun it retreats back to the nerve cells.

Earlier this year, media reported on a promising new candidate for a herpes vaccine. Using a completely different strategy than previous, failed herpes vaccines, the researchers behind this breakthrough targeted the part of the virus that allows it to hide from our immune systems. If this vaccine works as hoped, recipients will be able to mount an immune defense when exposed to the virus, blocking it from establishing a permanent home in nerve cells. It might even suppress outbreaks in people who already have herpes. Continue reading

AIDS at 35: The Anniversary of the First Report on a Mysterious New Disease

mmwrOn June 5, 1981 — 35 years ago this Sunday — the Centers for Disease Control and Prevention published a report with an inauspicious title: “Pneumocystis Pneumonia — Los Angeles.” Nestled between pieces on dengue and measles, the article in the Morbidity and Mortality Weekly Report briefly described five patients, all young men from Los Angeles with cases of life-threatening pneumonia. While it didn’t immediately grab headlines, its publication represented a turning point in public health: the beginning of the AIDS era.


In another 35 years, will AIDS be a fading memory?


These patients’ pneumonia had been caused by a particular species of fungus, which back then was responsible for fewer than 100 pneumonia cases annually. Young, healthy people weren’t supposed to be vulnerable to this fungal infection, and the fact that men with no known risk factors were suddenly falling victim to it was a huge red flag that something strange was afoot.

The patients shared other characteristics as well, and at that point, scientists could only speculate what, if any, of these traits were associated with the strange new disease. All five patients were “active homosexuals,” were positive for cytomegalovirus (CMV), had yeast infections, ranged in age from 29 to 36, and used inhalant drugs (aka “poppers”). The CDC knew right away that this mysterious cluster of illnesses must have been caused by “a common exposure that predisposes individuals to opportunistic infections” — an observation that, in hindsight, was incredibly accurate, as HIV destroys the immune system and opens its host to normally rare infections. The editors posited that “some aspect of a homosexual lifestyle” might increase risk for this type of pneumonia — perhaps a sexually transmitted disease that somehow caused pneumonia. Continue reading

Square Pegs, Round Holes: Building Trans-Inclusive Health Care

transgenderFor the first time in history, trans persons are being recognized in the mainstream and their identities are being embraced like never before. Laverne Cox’s cover story for Time and Amazon Prime’s original series Transparent winning four Emmys are examples of this recognition.

Kinda.


Today is National Transgender HIV Testing Day.


Truth is, the trans persons in the media are not representative of the norm. The findings of the National Transgender Discrimination Survey — a survey that collected responses from more than 6,000 transgender and gender-nonconforming individuals — give a clearer picture, and it’s not pretty. The authors of this study found trans persons faced adversity in almost all aspects of life, from experiencing double the rate of unemployment to suffering through a high rate of violent attacks (26 percent and 10 percent of the respondents reported being physically and sexually assaulted, respectively) because of their gender identities. Among all these results, I found one to be particularly unsettling:

“Respondents reported over four times the national average of HIV infection, with rates higher among transgender people of color.”

To me, a person born after the AIDS epidemic of the ’80s and privileged with a world that now has readily accessible condoms and HIV prevention medication (i.e., Truvada), HIV seemed like a relic of the past. Examining the amount of new HIV infections in the cisgender population (0.4 percent for females and 1.2 percent for males), this is an easy assumption to make. I was wrong. Other studies echoed the large disparities of HIV incidence and prevalence in trans persons. One systematic review uncovered four studies that found that 24.8 to 30.6 percent of male-to-female (MTF) transgender persons tested positive for HIV. Another study — conducted in Ontario, Canada — sampled 433 trans persons and found 7 percent of female-to-male (FTM) transgender persons and 19 percent of MTF persons had a high-risk sexual experience in the last year. Yet another found that 35 percent of MTF persons (and 2 percent of FTM persons) had HIV, and again, persons of color — in this case, African-American identified individuals — were at a greater risk. Indeed, in this study, African-American trans persons (FTM and MTF) were approximately three to 12 times more likely to have HIV. Given these data, the cynic in me questions, “Is anyone even trying to prevent HIV in trans persons?” Continue reading

World AIDS Day: Fighting the Stigma Is Half the Battle

RibbonThey say words can never hurt you, but in certain parts of the world, there are three letters that can take away everything dear to you: HIV.

Can you imagine having your family disown you? What if doctors refused to treat you, even with basic care? What would it feel like if you were not allowed to pursue any form of education? How about if you had no possibility of a future with a romantic partner?


We will never make strides in preventing HIV transmission until we confront the taboos that surround it.


This is reality for millions of men, women, and children in sub-Saharan Africa who have been diagnosed with HIV/AIDS. As of 2013, that number was 24.7 million, which accounts for the vast majority of the world’s total reported cases, which by 2014 approached 37 million people, 2.6 million of whom were children. In 2013 alone, 1.5 million sub-Saharan Africans were newly infected. Since the first case was reported in 1981, a certain stigma has always lingered around the disease. Many in the United States refer to it as the “gay disease” or accuse those infected of bestiality. They may say that someone who has been diagnosed should avoid intimacy, believing that a person with HIV is incapable of functional relationships without infecting their partner. In Africa, the implications are even more harsh. Often believed to be a “curse from God,” many regions exile an infected person from their community.

Worse, the stigma does not stop with individuals. It bleeds into the legal, political, and economic arenas as well. This is true worldwide. Some places have prosecuted women for transmitting the virus to their child, or have prosecuted individuals for not disclosing their positive status even if they have reached an undetectable viral load through antiretroviral therapy (ART). The discrimination surrounding a positive diagnosis is cited as the primary hurdle in addressing prevention and care. Continue reading