While nursing may be in her blood, HIV care is in Helen's heart. Although she broke into the field in 1997 due to freak chance -- she was a fresh graduate from her nursing master's program, and the position was open -- she's devoted herself completely to the job, and made it a part of her life. Like many people who enter HIV care, Helen also has a personal connection to the virus: HIV claimed the lives of two of her three cousins. "I felt my cousins didn't receive the support they needed when they were very ill," she says. "When I got into the field, I saw that I could be beneficial, help people and change their lives."
And she has -- in more ways than one. As a nurse practitioner, clinical research coordinator and research nurse with the Infectious Disease Research Clinic at Indiana University Medical Center, Helen not only cares for HIV-positive people directly; she has also managed dozens of Adult AIDS Clinical Trials Unit studies on HIV medications, treatment strategies and therapies for people with HIV-related health problems. She was also instrumental in establishing a comprehensive, hands-on HIV information course at her clinic, where newly infected people have the opportunity to learn more about the disease and their treatment options. "I am a strong supporter of educational programs, because knowledge is power," she says.
Helen's patients clearly appreciate her passion and devotion. In nominating her for an HIV Leadership Award, the sister of one of her patients gushed, "To try to describe why Helen is so special would take up 100 of these entry forms. I keep telling my brother that God did not give him AIDS, but God has given us Helen."
How long have you been in nursing?
Since the early '90s. I started right out of nursing school as an operating room nurse. I have been a nurse in HIV care since the beginning of 1997.
What did you do before that?
I was a stay-at-home mom. I worked as an Avon lady, because I had just moved to a new part of the country and I wanted to meet my neighbors.
How did you decide on HIV nursing?
Moving into HIV nursing was fate. I had just graduated with my masters in nursing and I was looking for a nurse practitioner position. This was a position that was open.
What is the most challenging aspect of being an HIV nurse?
The patient population living with HIV or AIDS need more from me as a nurse, including extra reassurance and support. They need to know I'll be around when they turn the next corner in their treatment, for better or worse.
What is the biggest challenge your patients with HIV deal with?
My patients have a fear of dying, and they have to deal with the societal stigma that is attached to their illness. A picture is often painted of a person living with HIV as being a dirty, drug-dealing person. Often times patients take their diagnosis as a death sentence, which is a mountain they must overcome. I try to educate them about the disease and tell them they don't have to be HIV -- they are just a person living with it.
What is your patient demographic?
We have a lot of older patients who have been positive since the late 1980s and early '90s. I am distressed that we are getting a lot of new young HIV patients. My patients are mostly male (85%). Our work is clinical research based, and we have a good referral base. We have the ability to help people financially -- we can use them as clinical trial participants, and in this way they can gain access to certain medications. We require all patients to have a primary care provider, so we get indigent care patients connected with a general practitioner.
What are your thoughts on prevention efforts?
Across the board not enough is being done. The wrong tactics are being used. They seem to have covered all the main media sources -- print, TV, radio, teaching in the schools -- but the message is given incorrectly. Abstinence is unrealistic, so we need to teach more about how to have sex safely. I attribute the number of young patients I see to unsatisfactory sex education. They don't know that you're never safe unless you are in a monogamous relationship, and even then. ... There are also specific populations that need to be reached, such as the individuals who think it's cool to have the disease; situations where people are passing on "the gift" need to be addressed.
What change would you like to see in HIV care?
When patients leave the HIV system and go to a different provider for a specialty problem, they may encounter stigma or medical professionals who won't treat them. In the HIV system, people are very empathetic to the needs of the patients. We work so hard to make them feel safe in the medical system; everyone in my immediate system is really great.
How do you counsel your patients when they are first diagnosed with HIV and when they need to start treatment?
In the beginning I look at the numbers. If they are doing well and there is no need for medication, I recommend they come back every six months. I am a strong supporter of educational programs, because knowledge is power. My patients can come in for an HIV 101 course. We go through all the medications and what they will do to your body, access to services, how to deal at home. We give them examples of what is safe, such as you can drink from the same glass as others, but don't share your toothbrush and don't clean the litter box.
This course started out loose, but has grown to a very structured program. When I first got here, I didn't feel that my patients knew what they were dealing with. I had all my patients take this course, and they were staying on the study longer and having better success with their viral loads than the patients who didn't take the course.
When did you decide you wanted to become a nurse?
I always wanted to be a nurse, although I started college in accounting, because I didn't want to compete with my mother, who is also a nurse. I realized accounting wasn't for me. I found a journal from sixth grade in which I wrote that I wanted to be a nurse, so in hindsight I guess that was the end of it.
Is there anyone who has strongly influenced you personally or professionally?
My mother has been the most influential person in my life both professionally and personally. She is a nurse practitioner and teacher. My mother showed me how to be a strong woman, to persevere. She came to this country with nothing, struggled and survived; she educated herself. My mother has always been there for me. It seems strange that your mother would be there for professional support, but she'll remind me why I do this when I begin to waver.
How do you keep from burning out?
I talk to a co-worker who I have a good relationship with. We are able to refocus and give each other reality checks when things seem overwhelming.
Have you ever felt that you failed in your job?
Around three years ago I had a patient who didn't want to live. She basically committed suicide by not eating or drinking. This turned out to be a success and a failure for me, because I realized an important life lesson. I need to help people, but I cannot make their choices for them -- I try to help them choose to live.
What do you think is the key to a good patient/provider relationship?
You have to have trust. They must be able to feel they are safe being truthful about their lifestyle. I need to be able to believe that they are telling the truth. I need to acknowledge their drug use and not scold them for it. If it is going to interact with their medications, I need to be able to tell them adverse effects. In order for them to survive this disease, they have to be able to trust that my guidance will get them to a healthy state.
Do you have a favorite patient?
There is one patient who I have developed a special relationship with. We've been together for 6-plus years. We've been to each other's homes and share milestone events in our lives. We have developed a friendship based on our professional relationship.
Where are you originally from?
I was born in Havana, Cuba, and immigrated to the U.S. in 1965. We went to San Diego, where I grew up. I moved to Indiana in 1986 with my now ex-husband so that we could be closer to his family. When we divorced, my kids wanted to stay in Indiana so we did. I enjoy California, because the mountains and ocean are close by. My family has moved to Florida, so that's where I visit.
Where do you live now?
I'm about 20 minutes southwest of Indianapolis in a rural community that's turning into suburbia. When I first moved here from California, I knew all my neighbors on account of being an Avon lady. I don't know them all anymore, but it was nice to meet them when I didn't know anyone in my new neighborhood. It's quiet here -- a pretty, wholesome community.
What do you do in your spare time?
Spare time??? Does cleaning my house count? I like to read. I read trashy novels that put me in a different world. I'm embarrassed to admit it, but it's true. I'm a very intelligent person; I know that, others know it, but I read these silly books. I like historical books, because they take me into a different zone. In these stories, people die on a sword, not because of a disease.
Can you tell me about a great adventure you had?
When I was 18 I sold everything I had and followed some people from San Diego to live in Blooming Prairie, Minnesota. We were going to live on Green Acres, like the TV show. We ended up living on corn and rice for the three months we lived there. We lived in a farmhouse that was falling apart. The floorboards on the second floor were so shoddy that you might end up on the first floor if you didn't watch where you walked. On the way back we tried to see Mt. Rushmore, but we never got there. It was a blast.
Is there anything else you'd like to share with us?
The reason I have stayed in HIV care: I had two cousins who died of HIV. I only had three to begin with and now I only have one left. I felt my cousins didn't receive the support they needed when they were very ill. When I got into the field, I saw that I could be beneficial, help people and change their lives.