The HIV epidemic has had a staggering impact on the world. According to the Centers for Disease Control and Prevention, the number of people in the U.S. who currently have HIV is about 1.2 million.
But the rate of new diagnoses in the U.S. has dropped considerably, by about 19% from 2005 to 2014, and new treatments have changed the nature of the infection tremendously. Acknowledging the progress and lessons learned since the 1980s is important because much of it can be directly applied to more recent viral outbreaks such as Ebola and Zika.
We recently spoke with three nursing leaders, all of whom have been actively involved in HIV prevention and care since its earliest days: Patrick Robinson, PhD, RN, ARCN, FAAN, Dean of Capella University’s School of Nursing and Health Sciences; Sheila Davis, DNP, ANP-BC, FAAN , Chief Nursing Officer at Boston’s Partners in Health; and Lucy Bradley-Springer, PhD, RN, ACRN, FAAN, Editor of the Journal of the Association of Nurses in AIDS Care and Associate Professor Emerita of the University of Colorado-Denver.
Speeding up the Process
Davis points to one of the most significant improvements in research and care that occurred because of HIV research: hastening the process to get new drugs to patients. “It used to take many years from the basic science bench to the patient,” she says. “But in the early days, it was about two years from diagnosis to death. What the HIV response effort did, through activism, was greatly improve the process of getting drugs through clinical trials. It revolutionized our ability to get drugs to patients sooner in life-threatening conditions.”
That had a twofold effect on later epidemics, such as Ebola and Zika: “[HIV] taught us so much about the immune system, which was a new frontier,” she explains. “It greatly influenced research in other conditions.” The need to disseminate new research findings became of paramount importance in Ebola, just as it did in HIV 30 years before. “HIV paved the way in terms of helping our entire response be rapid and coordinated when it came to Ebola,” she says. “There was strong community involvement and mobilization from the beginning.”
Bradley-Springer agrees. “Within 15 years, we had good treatment, and within 30 years we had excellent treatment,” she says. “The side effects are so much less difficult now than the early drugs. We have daily regimens that keep HIV in control. Now we’re seeing people living close to normal life expectancies if they stay adherent to their treatment plans.”
Robinson adds, “The process was incredibly fast. No other disease has had the trajectory of HIV, with its attendant issues of stigma and socio-political responses. But we refused to let more people die.” He agrees that lessons learned at that time transferred well, especially when Ebola was in the rise in Western Africa. “We learned much from HIV,” says Robinson. “If you don’t address the fear and stigma attached to it, you can’t attack the disease. With Ebola, like with HIV, nurses charged forward when others were retreating. There was a need for a rapid, logical response. If we had not responded like we did with Ebola, using what we learned from the early HIV years, and using good, sane public health principles, Ebola would be much more widely spread now.”
Once it was discovered that HIV was transmitted via sexual acts and blood contact, the effort to prevent transmission (safe sex, not sharing drug-using equipment, testing blood donors) ramped up. But that raised new sets of issues that required research and new ways of thinking about behaviors that were not well studied.
“The only way to end an epidemic is to stop transmission,” says Bradley-Springer. “We figured out fairly early how HIV was transmitted. But prevention was very difficult. We faced legal issues and major social barriers. For instance, we discovered that prisons would not provide condoms for inmates, and we ran into major controversies about providing clean injection equipment for drug users.”
While great strides have been made in the prevention arena, she notes that this aspect of the HIV epidemic needs continuous work going forward. “If we forget the lessons we should have learned, if people ignore prevention, the disease rates could rise again. Funding for evidence-based prevention efforts and further prevention research is urgently needed, so we don’t backslide.”
Transferrable Communications Model
Particularly relevant to other diseases going forward, said all three experts, were the lessons learned about communication and outreach in the HIV epidemic. Those lessons were especially important—and useful—when Ebola broke out in Africa. “With Ebola in Africa, things moved much more quickly than if we’d not had HIV,” Bradley-Springer points out.
Davis agrees. “We took the HIV model and superimposed it into the Ebola campaign, and quickly mobilized community and outreach programs. That way we were able to get people to identify the symptoms earlier and come in for care, which increased the survival rate.”
Treating the Intangible Condition of Stigma
Perhaps one of the most difficult things to fight during the early years of the epidemic—and a primary cause for concern during Ebola—is the stigma factor. “HIV was so stigmatized, and that aspect hasn’t gone away,” says Lucy Bradley-Springer. “In 30 years, we haven’t learned that stigmatizing other people greatly adds to the burden of disease.”
HIV infection quickly became known as the “gay” disease or the disease of drug users. Patients were shunned by their communities, even within the health care community. “Everyone was afraid,” says Bradley-Springer. “There were nurses who couldn’t deal with it, even after we figured out that they wouldn’t get sick from delivering a meal tray.” When the health care community is afraid of it, she notes, that can only increase the fear and the stigma in the wider community. But it can also lead to those health care providers being stigmatized themselves for being in contact with those patients. “We learned to involve the entire team right away,” says Davis. “And we put in social support for staff. We needed to help the caregivers, too.”
Outreach and communication efforts have made some differences in this, although not to the point of eradicating stigma. The entire cycle was repeated when Ebola rates surged in Africa. As the containment fields and communication mechanisms were put into place, the ability to save lives increased, but the stigma of having had Ebola—even, and especially, for survivors—remained.
Health care workers turned once again to the HIV crisis and found a relevant lesson: the AIDS Memorial Quilt. The quilt is composed of cloth panels, each of which is a memorial to someone who died from HIV infection. The quilt was taken on tour around the United States and quickly began to redirect people’s fear into mourning—just as they’d mourned people in their lives who died from other causes, making the condition more human.
A quilt wasn’t an option for Ebola, but someone came up with the idea of giving each person who survived Ebola a strip of cloth to hang on a tree outside the clinic. “It was a visual representation, a survivor tree,” says Davis. “It was a way to show that people could and did survive Ebola with rapid medical intervention. The AIDS Quilt represented death, but the Ebola tree represents survivors. It helped the community think about the disease in a different way, a survivable way.”
It also provided a framework for compassion, something sorely lacking when stigma is the prevalent response. “It is important to be compassionate, which can squelch judgment and discrimination,” says Bradley-Springer. Just one more important lesson from HIV.