Marianne Swanson knows the priceless value of knowledge.
As a senior staff nurse at the Ponce De Leon Center, Grady’s infectious disease clinic specializing in the treatment of advanced HIV/AIDS, Swanson encourages fresh-out-of-the-gate nurses in her field to have a deep understanding of the disease. Do your research and know what you’re dealing with, she says.
When Swanson first faced HIV/AIDS in 1987, her own personal understanding was more than a career essential. It became a matter of life or death.
Swanson is HIV positive.
“I was forced to educate myself more,” she said, “because I was confronting the same issue myself. But I didn’t need to be in that position. Information and education is the key to delivering people from their ignorance and fear.”
For more than 25 years, she’s been on the front lines of the disease, watching its evolution in medical culture and society’s ever-changing perception. Thanks to advancements in medication and treatment, a diagnosis once regarded as a death sentence has become a treatable, chronic illness.
Dr. Africa Alvarez, medical director at AID Atlanta, refers to the early days of HIV/AIDS as “the dark ages.” After graduating from medical school in 1982, Alvarez soon found herself in New York City in the midst of her internal medicine and infectious disease training. Suddenly patients began dying all around her, and panic and fear ran rampant.
“A lot of the more recent [medical] graduates don’t understand how it was,” said Alvarez. “It was sort of like the Ebola of the 1980s. We didn’t know how it was transmitted; we had no idea where it was coming from. We only knew people were dying.”
AIDS arrived as the great unknown, a pitch-black cloud hovering over the medical profession. No textbooks or research held the answers. Alvarez and her colleagues waded in a mire of helplessness. With treatment being virtually nonexistent at the time, supportive care and pain management became the only options. Holding a patient’s hand, she says, was nearly all you could do.
Eventually AZT, first introduced in the mid 1980s, and other single regimen drugs were used for treatment. Patients, however, were still dying. It wasn’t until the mid 1990s when the protease inhibitor class of drugs was developed. Through combination therapy of three or more active drugs, the medical professional began seeing patients live longer.
Yet even in the early days of combination therapy, patients often ingested a laundry list of pills. According to Swanson, it wasn’t unusual for a patient to be taking 12 to 15 pills per day for HIV therapy. Along with these harsh regimens came harsh side effects such as diarrhea and nausea.
Today things prove to be much simpler. HIV/AIDS patients no longer juggle a large arsenal of pill bottles to survive. Treatment can come in the form of a single tablet regimen or three pills once a day.
“It’s been amazing to see the miracles these medications have worked,” said Dr. Marcia McDonnell Holstad, a professor at Emory’s Nell Hodgson Woodruff School of Nursing and assistant director of clinical and social science integration at Emory’s Center for AIDS Research. “I’ve been doing it so long that I’ve been lucky enough to see people and take care of individuals who were literally resurrected from near death as a result of these meds.”
Marianne Swanson was one of them.
“I was next to die, literally” said Swanson. “Then I went on the meds in the mid 1990s. It took a while until I got strong again, but I got on course and began to live my life.”
In 2002 when Swanson decided to go back to work full time, she chose the Ponce De Leon Center, because that’s where she was receiving her care. She learned a position was opening up; she jumped on the opportunity, interviewed and got hired.
Like HIV/AIDS medications, opportunities and services for patients have grown and transformed throughout the years. The Ponce Center, one of the largest of its kind in the country, serves approximately 5,000 people.
Call it a one-stop shop for HIV/AIDS treatment. In addition to medical care, patients take advantage of a variety of support services. From mental health wellness, substance abuse counseling and nutrition to neurology, pulmonology and dental care, the Ponce Center serves as a comprehensive refuge for those caught in the eye of the HIV/AIDS hurricane.
What was once the number one cause of death in Americans ages 25 to 44 has plummeted. According to the Henry J. Kaiser Family Foundation, in 2010 HIV was the 7th leading cause of death for those in that same age group. Today the chance of an HIV-positive mother passing on the disease to a newborn during childbirth is less than 1 percent.
Despite these great strides, Dr. Alvarez says science and medicine remain far ahead of society.
“There’s still stigma and fear associated with HIV,” she said. “There are still even colleagues who will not see patients with HIV. Ignorance works both ways, and it takes a long time to catch up. We know what we can do and achieve, and how we can make our patients survive and live wonderful lives. But all is not roses, and we still can’t get the number of new infections significantly down.”
Experiencing the stigma firsthand on a daily basis, Swanson has a great understanding of society’s perspective. HIV/AIDS obviously challenges the belief systems of many regarding sexually appropriate behavior and morality.
“I totally understand the stigma,” she said, “but when we as patients who have HIV crouch in shame over this diagnosis, we promote the stigma. … I feel like I shatter stigma by being out there and open. My attitude is like, ‘Yeah, I have HIV. Now what are you gonna do about it?’ Because I’m dealing with it.”
Tearing down that stigma not only begins with educating the public, but the patients themselves. Through nursing Swanson works to thoroughly inform her patients with what it is they’re facing. She strives to pass on a strong understanding of the virus and what it’s doing to a patient’s body. This, she says, can be a form of empowerment.
“They need to know that the medication is the thing that’s going to give them their super power to stay in control and even thrive in the setting of having HIV,” Swanson explained. “Patients have got to know that HIV is a treatable illness now if you take your medication. If you don’t, then we’re stepping back 30 years.”
Of course being able to educate others starts by educating yourself. Dr. Holstad, who teaches AIDS classes at Emory’s School of Nursing, says Emory takes a contemporary approach to the study of HIV/AIDS. Now that the medical world views HIV as a chronic illness, education comes from a slightly different perspective.
“Recognizing symptoms, identifying specific types of people at risk, testing them and getting them into treatment are still important,” Dr. Holstad said, “but we have to look at the whole lifespan, because now patients are living much, much longer with HIV. So it’s really kind of evolved to looking a little more holistically and longitudinally at all of the multiple life events that occur with individuals who live with HIV for a long time.”
Emory nursing students receive a sweeping view of HIV/AIDS, including the pathophysiology of the virus, how the virus replicates, how medications work, and the psychosocial aspects of HIV. The school also offers an honors research program giving students the opportunity to work alongside Dr. Holstad as she continues her HIV-related research.
The importance of this kind of medical knowledge, however, should work in tandem with a sense of hope and empathy, Dr. Holstad says.
“Many patients can’t talk about their situation to anyone,” said Dr. Holstad. “Nurses need to be accepting of patients and willing to listen to their stories. A nurse may be one of the few people a patient feels comfortable talking to.”
Sometimes a nurse who can share his or her own personal inspiration and HIV/AIDS success stories can boost a patient’s morale. Swanson agrees.
Although she doesn’t always disclose to patients that’s she’s dealing with HIV herself, if she has a patient who she thinks might benefit from her own personal experience, she’ll talk with them. According to Swanson, the feeling of isolation among HIV patients can be so daunting, some patients question if treatment even matters at all. At that point, she says, the virus takes over.
“Sometimes just knowing someone else is in the same fight with them and that someone is in their corner in this boxing match can be powerful,” Swanson said.
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