CATAWBA COUNTY— In April 2003, Andrew Zebroski was living in New York.
During a routine, preoperative appointment for a hernia repair, he was tested for HIV.
“I found out I was positive about a week later,” he said. “I definitely didn’t expect for it come back as positive.”
The doctor who diagnosed him scheduled a few follow up appointments and told Zebroski to keep living his life as he always had, so he did.
However, he didn’t start treatment right away.
“I was told that the waiting list was two and a half years just to get on the assistance list, so it was recommended I move to Pennsylvania and try there,” Zebroski said. “Then it took about four months to get on ADAP there.”
In New York in 2003, there was a long wait to receive HIV medication through the AIDS Drug Assistance Program (ADAP) under the Ryan White CARE Act, which helps people without insurance and people who are considered low-income afford care.
Zebroski had family in Pennsylvania, which made the move easier, until he was forced to tell his family of his status.
More than a decade later, his sister’s reaction still stands out in his mind the most.
“My sister went crazy and basically banned me from seeing my nieces because I was going to, quote, ‘Give it to them,’” he said. “She was sorely uneducated.”
Zebroski’s experience isn’t abnormal.
Kathy Crowder, a family nurse practitioner at Fairgrove Primary Health in Conover, who has worked with HIV patients for almost 15 years, said she’s had patients tell her terrible stories of what’s happened to them after they shared their status.
Among the stories include people forcing their HIV positive family member to use disposable flatware, cups and plates.
The stigma surrounding HIV and AIDS has led to some losing their jobs and homes as well as family and friends.
“When I was in Pennsylvania, it got out that I was positive, and I ended up getting death threats, which is one of the reasons why I moved down here,” Zebroski added.
In addition to the death threats, he had contracted meningitis and his landlord refused to fix a plumbing issue, which led to him becoming homeless.
Thankfully, Zebroski, who is originally from Gastonia, was able to move into a rental property his father owned in Morganton.
Now, he lives in Hickory, is a cancer and meningitis survivor, participates in local theater, attends an HIV support group twice a month and is actively involved with the AIDS Leadership Foothills-Area Alliance (ALFA).
Although he’s faced many challenges, Zebroski continues to have a good attitude.
His biggest piece of advice he gives to someone who’s just been diagnosed is “listen to your doctor.”
Zebroski still hasn’t shared his status with everyone in his life, but he’s noticed during the last 15 years the conversation around HIV improve, but he said it still needs some work.
This is the first time he’s decided to publicly share his story.
How it started
On June 5, 1981, the Center for Disease Control and Prevention reported that five previously healthy, young gay men in Los Angeles were sick with the rare lung infection pneumocystis carinii pneumonia (PCP), according to a timeline on HIV.gov.
The report was picked up by national news outlets, and soon, doctors from across the U.S. contacted the CDC with more reports of PCP and other rare diseases in gay male patients.
By the end of the year, 270 gay men were reported to have a case of severe immune deficiency and 121 of them had died.
At first, the disease was called Gay-Related Immune Deficiency, but research quickly proved the disease could also be transmitted in other ways, which led to the name being changed to Acquired Immune Deficiency Syndrome, otherwise known as AIDS.
It wasn’t until 1984 that doctors at the U.S. National Cancer Institute and Pasteur Institute in France discovered what causes AIDS: Human immunodeficiency virus, or HIV.
It’s origin? A mutated virus that originally infected chimpanzees in Africa.
By Oct. 31, 1995, 500,000 cases of AIDS had been reported in the U.S.
Tackling the stigma
While the conversation and medical treatment of HIV has changed drastically in the last 30 years, there’s still a lot of shame and misinformation surrounding the disease.
“It’s not just a ‘gay disease,’” Crowder said.
Glenda Sigmon, a case manager at Fairgrove Primary Health, said she works with patients of all different genders, sexual orientations, professions, ages and economic backgrounds.
Fairgrove serves 823 people positive for HIV across Alexander, Allegany, Ashe, Burke, Caldwell, Catawba, Lincoln, Watauga and Wilkes counties.
Seventy-five percent of them are male, 24 percent are female and 1 percent are transgender, Crowder said.
For the nine counties Fairgrove serves, around 44 percent of those with the virus are heterosexual, around 51 percent are homosexual and the remaining contracted HIV through intravenous drug use.
Sigmon and Crowder said the first thing they do when interacting with new patients is assure them the disease, while incredibly serious, is not considered a “death sentence” as it was 20 to 30 years ago.
Second, is to remind them they’re not “dirty” or should be ashamed.
“There are certain behaviors that put you at a higher risk for getting HIV, but this could really happen to anyone,” Crowder said.
Despite the occasional hateful, ignorant remark or protest, staff members at Fairgrove love the work they do.
Sometimes people ask Sigmon why she would work with “those people,” and her response is always, “Why would I not?”
“If I person approaches me like that, I take that as an opportunity to educate them,” she said.
Sigmon and Crowder recall a recent HIV/AIDS awareness walk in Ridgeview where two of protesters showed up and followed the walkers their entire route, screaming at them the entire time about how “they’ll go to hell.”
“It was horrible, but there’s nothing we could do about it,” Crowder said.
Globally, there are an estimated 37 million people living with HIV, but only 60 percent are aware of their status.
The U.S. is home to 1 million of those infected with HIV, with around 44 percent living in the South.
The amount of people living with HIV in the South is so high, the CDC has declared it an epidemic.
The region has high rates of HIV in suburban and rural areas in addition to urban areas, according to the CDC. This is a unique characteristic when compared to the rest of the U.S.
Why is HIV so concentrated in the South?
Texas, Oklahoma, Georgia and Florida are the top four states with the highest proportions of people without health insurance, according to the CDC, which is one of the key factors as to why HIV numbers are so high, despite governmental assistance.
“The heavy burden of HIV in the South is driven in part by unique socioeconomic factors. Income inequality, poverty and poorer health outcomes have long been more widespread in southern states, compared to the rest of the nation,” according to a May 2016 study by the CDC.
As for racial demographics, black men who have sex with men (MSM) are disproportionately affected by HIV in the South compared to every other race, sex and means of transmission.
In 2014, black MSM accounted for 54 percent of new HIV diagnoses in the South, according to the CDC.
White MSM are the second largest demographic followed by Latino MSM, then black heterosexual women.
“In fact, of all black MSM diagnosed with HIV nationally in 2014, more than 60 percent were living in the South,” the CDC report says.
Locally, Fairgrove’s demographics do not match the region where 70 percent of their patients are white, 26 percent are black, and the remaining 4 percent are Hispanic/Latino or other.
HIV deaths in the South accounted for 47 percent of HIV-related deaths in 2013, according to the CDC.
“Cultural factors may also play a key role,” the CDC report says. “Issues such as homophobia and transphobia, racism, and general discomfort with public discussion of sexuality may be more widespread in the South and can lead to higher levels of stigma, which may limit people’s willingness to seek HIV testing, care or prevention services.”
HIV also is rising among young people.
In 2015, youth aged 13 to 24 accounted for 22 percent of all new HIV diagnoses in the United States, according to the CDC.
There is no cure for HIV and AIDS, but there are many ways to prevent and treat HIV.
One of the biggest ways to prevent HIV is with the use of condoms, Crowder said.
Getting tested for HIV and encouraging sexual partners to get tested also is important.
“In North Carolina, it’s estimated only 88 percent of people with HIV know their status,” Crowder said. “That means 12 percent of people with HIV in North Carolina do not realize they have it.”
The Affordable Care Act requires insurance companies to cover free HIV testing for everyone ages 15 to 65, according to HIV.gov, and Catawba County Public Health’s offers free, confidential STD testing, including HIV.
Those who are in a relationship with someone with HIV or participate in high-risk behavior are encouraged to take PRep, a drug which reduces a person’s risk of contracting HIV.
If diagnosed, starting treatment right away is essential to staying healthy and reducing the risk of spreading the disease.
Nationally, around 49 percent of people with HIV have the virus suppressed, according to the CDC.
In the nine counties Fairgrove services, an astounding 90 percent of their patients have an undetectable viral count, Crowder said.
Although the virus may be undetectable, that doesn’t mean a person is cured. The virus can still be passed on, so continuing to take medication and practice safe sex is crucial.
“It’s important to take meds consistently for them to work,” Crowder said.
Not only is HIV a more manageable, less life-threatening disease than it was in the 1980s and 1990s, medication is more manageable as well.
Ultimately, each patient’s case is different and treatment plans are between that person and their doctor.
“We don’t want it to seem that simple, cause it’s not,” Crowder said. “Living with HIV is far more than just swallowing a pill.”
However, patients have more options now when choosing which type of medication works best for them, and some of the pills HIV-positive people have to take have been consolidated to one medication with fewer side-effects.
HIV patients are encouraged to join a Safe Space support group that meets twice a month. The date, time and location are kept private and are only shared with patients who are HIV-positive.
Nearly half of the people living with HIV make less than $10,000 a year, which is why the case managers at Fairgrove are an essential part of helping patients regain and maintain their health.
Case managers visit the patients in their homes and build relationships with them.
Sigmon said she had one patient who kept missing appointments, and when she went to her house she realized she was missing appointments because she was helping take care of a child.
When someone is first diagnosed with HIV, they typically have to miss a lot of work for doctor’s appointments. Depending on the person’s job, this could mean loss of income and in some cases, people have lost their jobs.
When that happens, there are funds and programs available to help patients with some of their bills in the meantime, Sigmon said
How to help
Two of the biggest issues surrounding HIV continue to be the stigma and funding, Sigmon and Crowder said.
Raising awareness and truthfully educating others about HIV can help defeat the stigma.
Participating in fundraisers and advocating for HIV funding to local, state and national leaders are ways to help secure funding for patient care and research.
Anyone, however, has the opportunity to get involved with the AIDS Leadership Foothills-Area Alliance group (ALFA).
ALFA is a United Way agency that works with Fairgrove to provide care and support for its patients, according to AFLA’s website.
Those who are interested in volunteering should call 828-322-1447 ext. 232. For more information about the organization, visit alfainfo.org.