As a nurse since 1972 and a nurse practitioner since 1995, Alice Myerson has been able to see the effects of HIV and AIDS on her patient population since the discovery of the disease. She works with young people, both those who were infected at birth and those who were infected sexually. Her clinic, which is located in New York City, is Montefoire Hospital Adolescent AIDS Program, one of the few programs in the United States specializing in adolescent care. Her work puts her in contact with a patient population in need of a considerable amount of mental and physical care.
How has nursing changed since you started?
When I started there was no HIV. I have different visions: of what the world was like without HIV, what it looked like at the beginning of the disease and what it is today. Socially, HIV has forced people to be much more open about sexuality. We've come a long way in terms of treatment of the illness; now we treat it both medically and humanistically.
What is the key to a good patient/provider relationship?
HIV has been born into activism; patients have pushed health care providers to reckon with them as human beings. Our patients want to know what is going on, and they expect to be given choices. The role of the provider is not to tell people what to do, but to allow people to make their own decisions. A good provider will present all the options, because the patients are going to do what they want anyway.
What is your patient demographic?
I treat patients between the ages of 13 and 24. The younger the child, the more responsible we are as providers for their safety. The goal of our program is to train the children to learn how to live with HIV as an adult. We teach them how to live with a chronic illness, which is a big change from when it used to be a terminal illness. They can live fuller lives because of the education we provide. Unfortunately, for some of our patients, this is the only way they get this kind of help, and, tragically, they had to get HIV to get it, but at least they are receiving support.
They were at high risk for HIV because they are disrupted youths. They have chaotic family members, and find themselves unsupervised vulnerable minors, with minimal support from a family or society. It would have been nice if someone had helped them before they found themselves in this situation. Thirty percent of the kids we are seeing were infected at birth. Seventy percent were infected sexually.
Have you had any particularly challenging cases?
A more challenging case is a 17-year-old boy who came in a few months ago. He has no one, and he is emotionally fragile. I am trying intensive outreach with him and call him once a week. Sometimes he calls me back, and sometimes he doesn't. I define success with him if I can get him to come in for a visit.
What are some of the unique aspects to counseling and educating young patients?
I deal with medication differently. I won't give them medications unless I know they are going to commit to taking them. I have a large spectrum of patients. They lead very different and sometimes troubling lives.
Out of 81 of my young patients, 46 have been in foster care; 23 have a dead mother -- not just the patients who were infected at birth; 46 have been suicidal at some point and 25 have been arrested. I have two females who are on the other end of the spectrum, because they have families with whom they are involved. There were circumstances that put them at risk for HIV. I try to educate them to live their lives safely now that they are living with HIV.
What are your views on HIV prevention efforts?
There are many ways to approach prevention. But the first thing, I think, is that we must be honest with ourselves and start handing out condoms to kids, because everyone knows they will be having sex. There needs to be treatment of sexually transmitted diseases (STDs) early, because getting chlamydia increases someone's risk of getting HIV; it breaks down one's natural defense. More importantly, if someone gets a STD, it also means they are having unprotected sex. We need to look at prevention as dealing with social and mental health issues, and no one seems to be taking that on right now.
What do you like best about your job?
I enjoy all the relationships that I form with the young people. I find my patients exciting and engaging. I get to see them through a great period of life when they go through so much growth and development. It's a privilege to work with them. I also love my team; the medical director and social workers are awesome.
What is the worst part of your job?
The hardest part of my job is separating and not getting sucked into their issues. My patients can be very absorbing. I have been learning how to disengage from my job. I'm not their mother or father or sister or friend. Keeping that boundary is the hardest part for me.
Is there a difference in how you care for patients who were infected at birth and those who were infected as teens?
The patients who were infected at birth are oftentimes much sicker because they've had the disease for a very long time. They've been exposed to many more medications than the newly infected patients have. These two groups got the virus differently, but they are also very much the same. They have the same desires, some want to have babies, others just want to go to school, but they can't because they are dying. Since 1998, we have had much more success with getting these children better.
How do you counsel your patients when they have to go on medication?
The art of deciding when to go on meds is different from the guidelines, because this is the moment when patients must realize that they will be dedicated to this for life. I would never base any diagnosis on any one visit. I want to see the trends in their behavior. Of course, I like to treat people before they become sick with something like pneumonia. I encourage my patients to come in for talking therapy, hopefully getting them engaged in their care and maybe breaking down some of their depression. We try to work together as a team. We try to make this a village where everyone validates their life as a human being.
The combination therapy was extremely hard for anyone with HIV to take at the beginning. Back then, some patients were taking up to 20 pills a day, but now it's necessary to only take two pills a day and these new meds have minimal side effects. We've come a huge distance in having a real treatment that we can offer people. We are able to try and rebuild their immune system, and when it works it is amazing and exciting.
Do you have a favorite patient?
I like the saying that my mother would give us when one of us would ask if we were her favorite child. She would say, "You are, because you're sitting on my lap right now." Whichever patient I'm dealing with at the moment.
How do you involve the parents of your patients in their care?
We are always trying to involve the parents more. It also depends on the age of the patient. The congenitally infected kids usually have some kind of family system. I notice that with the older youths, girls are a little more likely to involve their family. I view the transitional period of adolescence to be about separation. I try to remember that my patients are in the natural period of their lives where they separate from their families. To become an independent being, they need to grow up and move on. I try to equip the kids with the skills to function in the world.
Can you tell me about your own family?
I have a daughter who is 25, who lives in the city. I have a very good relationship with her, and I see her a lot.
What kind of community do you live in?
I live in the Bronx. I love living here. I wasn't born here, but I've been here since I was in my early 20s. We are able to mobilize the community and maintain the neighborhood. Even when new people move in on the street, we get to know them because everyone gets a dog. There are so many foods and ethnicities and color and languages. You have to be strong to survive in the Bronx, where there are less demarcated neighborhoods than the other boroughs. My daughter went to public school here the whole way; people tend to stereotype them as not being very good, but there are a lot of positive things going on in them. The Bronx gets a bad rap, but we don't want anyone to know how great it is, because everyone will move up here.
Where are you from?
I grew up in Massachusetts, in Lexington; it's outside of Boston. I never thought of going back. I came to New York when I was 17 and vowed I would never leave.
Where do you like to go when you travel?
Last year I had a very busy year. I went to Cuba. I found it so interesting to be in a communist country, everything was different but the same. Everyone was extremely friendly, and people there will just start talking to you. I don't speak Spanish well, but I found myself having deep conversations with people. Seeing what the boycott has done to the people was hard. The housing is just terrible. We visited hospitals and clinics. Their treatment of autism and mental retardation is awesome. They do a fantastic job with things that do not take technology. It was amazing to see what they could do with so little.
What do you like to do in your spare time?
I like to do yoga and Pilates. Up until this year, I was a dancer, but I hurt my feet. I write and socialize and try to enjoy life.
Would you like to dedicate this award to anyone?
I would like to dedicate it to all of the young people that have come through the program -- the ones who lived and the ones who didn't. I hope we were able to give them the best possible care. It has been an honor to work with them.