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Providing Care for HIV Positive Patients

November 15, 2017

The prognosis for people with HIV has dramatically improved since the 1980s. What has changed in HIV patient care over the last 30 years?

When Clinical Assistant Professor Kathleen Woodruff became a nurse practitioner in 1987, HIV was still widely misunderstood and stigmatized. Woodruff felt an immediate affinity for this patient population and decided to make caregiving for people with HIV part of her life’s work. Over the past 30 years, she has witnessed unique challenges in the treatment of HIV patients as well as a dramatic improvement to the standard of care.

Reaching Out to Patients

For HIV patients in the 1980s, a diagnosis signified a long, difficult, and usually fatal road. Scientists had only recently identified HIV as the cause of AIDS, and prior to 1987, when azidothymidine (AZT) was released to the public, treatment options were limited. When antiretroviral medication finally became available, patients often had to cope with debilitating side effects including nausea, vomiting and liver damage. Even worse, AZT only slowed progression of the disease - most patients would eventually develop AIDS.

In addition to the terrifying reality of an HIV diagnosis, patients also had to cope with the social stigma associated with the disease. Gay men bore the brunt of this, as revealing their HIV status often meant coming out to their families and friends about their sexual orientation. Many with HIV faced outright rejection instead of receiving the support they needed. Even in cases where families were sympathetic, misinformation about the disease made patients’ lives unnecessarily difficult.

“I heard stories from patients whose families made them eat off separate dishes — their own plates, glasses and utensils —- because they were so scared of contracting HIV,” Woodruff recalls. “Patients felt like pariahs.”

Woodruff took it upon herself to combat this stigma by educating medical providers and families about the realities of HIV. She was taught early on that HIV-positive patients were no different from many other patients in her care, and that if standard medical precautions were taken, the risk of contracting the disease was miniscule. In a time when many clinicians feared even touching their patients, Woodruff made it a point to hold their hands and hug them at the end of every visit.

“Those gestures meant the world to my patients,” Woodruff says. “But many of them asked whether I was worried about getting HIV. I’d reply that I had two kids at home and would never do anything to put my family at risk. That put their minds at ease.”

For Woodruff, working with HIV-positive patients felt like a natural fit. She could provide them the care they wanted and needed, and they gave her hope that there would be better days ahead.

From Fatal Diagnosis to Chronic Condition

Over the course of her 30 years of clinical work, Woodruff has seen prognoses and quality of life improve exponentially for her patients. Today, roughly 1.1 million Americans live with HIV. To manage their symptoms, most patients now follow a regimen of combination antiretroviral therapy, which greatly reduces the risk of side effects and lessens the viral load to nearly undetectable levels.

“HIV is no longer a fatal diagnosis,” Woodruff explains. “It’s serious, but we think of it as a chronic condition like hypertension or diabetes. Patients work with a team of doctors to manage their disease, and they’re more likely to die with their diagnosis than of it.”

Thanks to an increased understanding of the disease and the revelation that many celebrities are HIV-positive, the stigma surrounding the disease has decreased in the United States. We now know that HIV infection is not limited to the “4 H’s” — homosexuals, Haitians, hemophiliacs and heroin addicts — but can, in fact, affect anyone, regardless of class, race or sexuality. Additionally, federal regulations prevent discrimination based on perceived or actual HIV status, allowing patients to keep their homes and jobs.

Though quality of life is getting progressively better for HIV patients, Woodruff says that her work is far from over: “There’s a concern that people are going to become complacent now that HIV is much more manageable. Though the overall rate of infection is decreasing, certain groups are actually experiencing an increase in diagnoses — especially gay and bisexual men of color. But the population with the fastest-growing diagnosis rate is the elderly. They need education on things like safe sex, gay sex and condom use.”

The CDC recommends that everyone between the ages of 13 and 64 get tested for HIV at least once — since one in seven people with HIV is unaware of their diagnosis — and that members of high-risk groups should be tested once a year. People at high risk of contracting the disease should also consider pre-exposure prophylaxis (PrEP) as an option.

“HIV treatment has come a long way,” says Woodruff. “With the right treatment plan and precautions, HIV patients and their families can live practically normal lives.”