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In the past few decades, so much has changed about HIV—for many, it’s no longer a death sentence. Jeffrey Kwong, DNP, MPH, ANP-BC, ACRN, AAHIVS, FAANP, a Professor and Associate Dean for the Division of Advanced Nursing Practice at Rutgers School of Nursing as well as the President of the Association of Nurses in AIDS Care (ANAC), began working with people living with HIV in 1986—initially as a volunteer for a local community organization. In honor of World AIDS Day, he took time to answer our questions about working as a nurse with people with HIV, how it’s changed over the years, and the challenges and rewards he’s experienced.
What made you interested in becoming involved with patients living with HIV?
In 1986, I was a “buddy” who provided basic companionship for people who were diagnosed and often alienated or abandoned by their families/partners/friends because they had HIV. It was a very different time. Professionally, I initially worked as a public health administrator overseeing a Ryan White Program for Alameda County in the San Francisco Bay Area, then I went back to nursing school. I began working as an HIV clinical trials nurse in 1996 and then as a Primary Care Nurse Practitioner in 1997, and I have been in this role ever since. Although I have an academic appointment, I still maintain a clinical practice and take care of patients living with HIV, as well as those at risk of HIV infection.
What initially sparked my interest in HIV was wanting to do something for my community—to help those who were alienated, ostracized, and stigmatized because of their HIV status.
What are some of the biggest surprises you’ve found with working with patients with HIV? What would other nurses be surprised by?
There have been many surprises over the years. However, I think what still strikes me is the resilience; many of my patients have to be able to overcome so many challenges and life “obstacles” and to survive and thrive. One of the great things about being a primary care provider is getting to see patients over time—and some of my patients I have followed for years. As part of that process, they share their life journeys with me, and for some people, it’s amazing to hear all of the things that they have experienced: from battling substance abuse, to overcoming stigma, to being able to go back to school and change careers, to starting families and being successful and happy and living!
I think other nurses would be surprised at how rewarding it is to share the journey of being with a patient who is newly diagnosed and who is in tears because they think that HIV is a “death sentence”—and teaching them, caring for them, getting them on treatment, and watching them regain their hope and do well on HIV treatment and move on with their lives. And now we are watching them age into older adulthood!
What are some of the biggest challenges that you’ve experienced working with this patient population?
I think the biggest challenges have been dealing with stigma. Even today there is still so much stigma around HIV that many people are afraid to talk about it. They don’t want to get tested because they think “it can’t happen to them” (even though the CDC has recommended universal opt-out testing for all individuals 13 to 64 years of age regardless of risk, and the USPSTF also recommends universal testing for ages 15 to 65). The other challenge is that people think “HIV is over” and that because there are highly effective treatments, HIV isn’t a “big deal.” It still is an issue and people still need to know their status, get tested regularly, and take preventive measures.
For those who are doing well on treatment, we still have to educate and remind them of the importance of taking their medications regularly, having regular follow-up with their providers, and doing all of the preventive health interventions that will help them age successfully into older adulthood.
What have been some of your biggest rewards?
One of my favorite moments involves a woman I first met in the late 1990s when she was newly diagnosed with advanced HIV disease. I was her primary care NP for many years, and she shared with me when we first met that her dream was to live long enough to see her daughter graduate from high school. Well, not only did she get to see her daughter graduate from high school, but nearly 20 years later she is now a proud grandmother! And she said to me that all of this was “thanks to me”—but it really wasn’t me. I might have helped “steer the ship” by getting her on treatment and managing her over these years, but it’s moments like that when I’m grateful for the work that I get to do as an HIV provider.
With the progression of the treatments for HIV, I’m sure that the nursing field with these patients has changed as well. How has it? Please explain.
The biggest change and the challenge that I see as a provider is that our patients are aging. Nearly 70% of those living with HIV will be 50 years or older by 2030. Nurses, nurse practitioners, and other providers will need to know how to care for this population. When I think of the field of HIV, many of us initially only did infectious disease or hospice or oncology work. Then as patients started to do well, we had to learn primary care (how to deal with diabetes and hypertension, etc.). Now as patients are aging, we’ll need to learn how to be geriatric specialists. (Remember, geriatrics is its own specialty.) Similarly, geriatric providers will need to learn more about HIV to better care for this population.
Also with the availability of PrEP (HIV pre-exposure prophylaxis), many primary care providers need to be familiar with this intervention to help prevent people from becoming infected with HIV. The CDC estimates that over a million people would benefit from PrEP, but only a fraction of those individuals receive it—in part due to providers who are not willing or unfamiliar with how to prescribe it or manage patients who are on PrEP. This is where general primary care NPs can really make a difference in curbing the epidemic. We now have the tools to end the HIV epidemic. We just have to get providers (nurses, nurse practitioners, physicians, PAs, mental health providers, pharmacists, and the entire health care team) to work together to prevent and manage HIV, and together we can one day see the end of this epidemic.
If nurses want to start working primarily with patients with HIV, what should they do? Any particular training or certification they should get?
For those interested in HIV, I would recommend the Association of Nurses in AIDS Care (ANAC). We’re a professional organization for nurses and other health professionals who are interested in caring for persons living with HIV and those at risk for HIV. The American Academy of HIV Medicine (AAHIVM) is also great. Additionally, there are regional AIDS Education and Training Centers (AETC) across the U.S. that provide education and resources for clinicians wanting to learn more about HIV treatment and prevention.
As for certification, there are a couple of options. The HIV/AIDS Nursing Certification Board (HANCB) offers two types of certifications: the AIDS Certified Registered Nurse (ACRN) certification and the Advanced AIDS Certified Registered Nurse (AACRN) certification. The American Academy of HIV Medicine also offers a certification as an HIV Specialist (AAHIVS).
Is there anything else that you think is important for readers to know?
Nurses and nurse practitioners play a critical role in all aspects of care for persons living with HIV and those at risk for HIV—not only at the direct care level, but also at the public policy and advocacy level. I would encourage nurses from all disciplines and specialties to think about how HIV impacts their jobs, their lives, or their patients’ lives. As one of my mentors said, “Every nurse is an HIV nurse.”