Following the images of the Ebola outbreak that was first reported in March, it isn’t difficult to imagine rows and rows of hospital beds of patients cared for by healthcare workers dressed head-to-toe in protective gear.
The international media has offered countless glimpses of the roughly 16,000 reported patients worldwide, including nearly 6,000 who have died, mostly in countries on the west coast of Africa: Liberia, Sierra Leone, and Guinea, according to November 23, 2014, statistics from the Centers for Disease Control and Prevention.
While people around the globe, including Hoosiers, commemorated World AIDS Day on December 1, they may have recalled a similar sight that was common in the news 30 years ago.
Also around that time, on December 17, 1984, a 13-year-old named Ryan White was diagnosed with AIDS in Indiana, due to a tainted blood transfusion. Following White’s death in 1990 at 18, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was passed. The Ryan White HIV/AIDS Program continues to fund services to an estimated 536,000 people each year living with HIV and AIDS in the United States.
People are less likely to talk about HIV/AIDS because those who’ve been diagnosed are living longer and more treatments are available with fewer side effects than the first drug, AZT. However, according to amfAR, The Foundation for AIDS Research, 1.1 million people in the United States are living with HIV/AIDS, and almost one in five people are unaware they are infected. Approximately 50,000 new infections have occurred every year in recent years, men who have sex with men are the most likely to be infected, especially young African-American men who have sex with men, but women make up about 20 percent of new cases.
Worldwide, there are 35 million people living with HIV/AIDS, and every day more than 5,700 people contract HIV, according to statistics compiled by amfAR.
However, that seems to be all but forgotten when the media focuses on news of Ebola, including four cases and one death for patients diagnosed in the U.S., as of November 23.
Dr. Virginia Caine, an infectious disease specialist and director of the Marion County Public Health Department, says this Ebola outbreak is worse than others because it occurred in an urban setting with a dense population as opposed to past outbreaks in more rural areas.
Further, “the political strife that has been going on in these countries [Liberia, Sierra Leone, Guinea] has decimated their healthcare delivery infrastructures,” says Dr. Caine. “They don’t have enough gowns, and they might not even have soap or gloves. Another problem is the fear and mistrust from some of the residents in those countries. They hear about people going to the hospital who still die, and that people are being quarantined if they’ve been exposed to friends and relatives with Ebola. It’s very scary to some of these residents. Some of them have gone into hiding, even when some of them were symptomatic, and refused to get healthcare.”
But if it is found in Indianapolis, “All of our hospitals and infectious disease consultants have been preparing in case an Ebola patient comes into an emergency room,” says Dr. Caine. “How to isolate that patient, how to wear the protective gowns, and how to take necessary precautions to make sure there isn’t a risk to any other people in that hospital. We have some of the best infectious disease doctors in the country, and I feel really good about the process here.”
She also encourages Indiana residents to get flu shots.
“We’ve had people call and say, ‘my muscles are aching, I have a fever, sore throat, nausea or diarrhea or vomiting, and I’m concerned I have Ebola, but I may have the flu,’” she says. “It’s easier to concentrate on another disease if they’ve had a flu vaccine. When it comes to treatment, time is of the essence for Ebola patients.”
While Ebola and HIV have some things in common, including the spread of the viruses by bodily fluids and even a similar method of infecting healthy cells, an otherwise healthy person with HIV is unlikely to know until he or she gets tested, something Dr. Caine and other medical professionals encourage.
According to the Indiana State Department of Health, the number of persons diagnosed as living with HIV/AIDS (PLWHA) in the state of Indiana continues to increase every year. In 2012, the number increased from 10,279 in 2011 to 10,746 at the end of 2012. By the end of 2013, the number increased again to a total of 11,087 PLWHA. In Marion County alone, as of December 31, 2013, there were 4,582 PLWHA, plus another 853 in the donut counties. Those numbers do not include those PLWHA who haven’t been tested.
From 1981 to December 31, 2013, 6,206 people have died in Indiana after being diagnosed with HIV or AIDS, compared to 6,070 as of December 31, 2012.
While Indianapolis-area HIV/AIDS awareness community members tend to agree that much has changed in the last 30 years, there is still work to be done.
For instance, Greg, 54, who was diagnosed with AIDS in the mid-1980s, remembers healthcare workers and even ambulance drivers refusing to take his extremely sick partner, Carlos, to the hospital. When in the hospital, Carlos would be one of many sick people in an AIDS Ward in a hospital in Chicago. While the memories are painful to recall—he had to take several breaks during the interview for this article and said he rarely talks about the past—he clearly remembers those mental images decades later.
Also, because there was no option then for Greg and Carlos, or Greg and his next partner, Jesse, to get married at that time, he had to fight just to have access to see them, and would fight on their behalf for their care.
Because not much was known in terms of treating AIDS at that time, Greg says he, an airline employee with no medical training, would be expected to treat his partners from drawing blood to administering medicine with an IV based only on advice from healthcare professionals.
In addition to his battles with healthcare workers, Greg was also afraid he’d lose his job if his employer found out that his partners had died of AIDS and he was likely to be infected. Greg found himself telling coworkers that his first partner died of a brain tumor and his second died of a heart attack.
The stigma is something he says continues today, which is why he didn’t want his last name published. Yet he appreciates efforts made by celebrities over the years, and still tears up when he recalls Princess Diana holding the hand of a patient in an AIDS ward in 1989. In fact, on World AIDS Day, Diana’s son, Prince Harry, started his own campaign to help end the stigma of living with HIV/AIDS.
Greg says hospital and healthcare workers treat him and his husband George, who was HIV-positive before he met Greg 16 years ago, much better. Now that they are legally married as of this Fall, they enjoy more rights as a couple. Even before they were married, hospital visits were not the same concern they were for Greg and his partners in the early days.
Greg recalled one nurse who told George, “that we’re all going to die some day,” after George learned he had developed a resistance to every available drug, something that is rare but happens among some PLWHA, especially if they don’t follow the very specific, tedious instructions to take their medications.
George has since started a new regimen, and he and Greg are hopeful that this one will help raise his T-Cell Count from 7 to a number in the range of 500-1,200, what is considered healthy according to AIDS.gov. They are also hopeful that their care coordinator at The Concord Center will find a way for insurance to cover the new drug, another common concern for PLWHA.
It also hasn’t been smooth sailing with Greg’s family members. One Thanksgiving, Greg says he noticed his brother throwing away the china because Greg used it. More recently, Greg’s brother refused to share a meal at a fondue restaurant, something that has been proven not to spread HIV/AIDS, but something Greg fears many people still think is a risk.
As a reminder, the only way to get HIV/AIDS is through transmission of bodily fluids directly to mucous membranes or blood. It is mainly spread by having unprotected sex, sharing intravenous needles, or from a mother to her baby. However, says Dr. Caine, if the mother knows her status and takes the right precautions before the baby is born, the risk can be as low as 1-2 percent.
Paula French, co-executive director of STEP-UP, Inc., an organization whose programs provide HIV/AIDS-related services, testing, education, and prevention, also remembers the early days of AIDS in the U.S. She didn’t think it affected her, so she didn’t think much of it until her brother Steve died of AIDS in April 1994. He told French he was sick only a few days before he died. When her coworkers found out he had AIDS, they would speak in hushed tones about how her brother died, some would even express their sympathy that her brother had AIDS. Seeking a support system in her grief, she started to volunteer in the Indianapolis AIDS awareness community that June, and ultimately got a paying job in the field in November 1994.
French agrees that things have gotten better, but the stigma is still there. One bright spot is she knows, through the programs at STEP-UP, that people are aware and are getting tested. The organization has been passing out “Safer Sex Kits” for several years, and she expects STEP-UP to pass out its millionth kit later this month.
The kits include not only condoms and info about HIV/AIDS, but also color-coded cards with information about where to get tested. Over the years, she has learned that nearly a third of those who get tested for STDs at Bell Flower Clinic are there because of those cards.
Funding has also been more of a challenge in recent years, says Betty Wilson, president and CEO of The Health Foundation of Greater Indianapolis, which oversees the Indiana AIDS Fund, the largest private grant-maker in the state for AIDS-related non-profits.
To support those organizations, the Indiana AIDS Fund hosts two annual events. The Indiana AIDS Walk that took place in September has raised almost $215,000 so far this year for the Gregory R. Powers Direct Emergency Financial Assistance (DEFA) Fund, which provides funds for emergency shelter, utilities, food, medicine, transportation and other critical needs of those living with HIV/AIDS. (donations tend to trickle in until the end of the year). The other event, Spotlight, a performing arts benefit in the Spring, raised more than $350,000 this year. Next year’s Spotlight will take place on May 11, 2015.
The Health Foundation has also recently awarded $3.15 million in capacity building grants to health care providers and AIDS service agencies around the state, including $1 million to Eskenazi Health to offer rapid HIV testing at its eight health center locations, and $1.3 million to The Damien Center to increase its on-site services for clients.
However, Wilson and Program Director Jason Grisell say the dollars don’t stretch as far as they used to with more people living longer with HIV/AIDS, and with fewer major sponsors giving to their annual events.
They say there has also been an overall decrease in individual donations, particularly from the LGBTQ community. They attribute this to the recession of the last few years and to increased donations to other causes, such as marriage equality.
They do note, however, that there are still some long-time backers who support the events, including the performers volunteer their time for Spotlight; the Bag Ladies, who have also been around since the early days of AIDS; Indy Pride; and the Ladies of Legends at Talbot Street.
Yet there is some hope. PLWHA like Greg remain healthy, tests are more accessible than ever, and there is also a preventative medicine known as Pre-Exposure Prophylaxis or PrEP. Dr. Caine says studies of the treatment have shown significant reductions in infection rates of HIV/AIDS. However, adds Grisell, it has been a bit of a hard sell for at-risk individuals because participants need to take it every day, and it can cause some short-term side effects.
However, Greg and others interviewed for this story agree that attitudes still need to change, and it’s unclear what it will take.
“A lot of people don’t want to know,” says Greg. “If they’re having unprotected sex, they have a guilt-free conscience, you know what I mean? But they should still get tested, get on medication, take their pills. Hopefully the pharmaceutical companies will someday come up with a cure or if they have one already they will release it.”