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D. Wing Takakuwa, R.N.
Kona, Hawaii
 


D. Wing Takakuwa
  Nurse case manager D. Wing Takakuwa goes to remarkable lengths to help her HIV-positive clients, most of whom live in remote areas on the Hawaiian islands.
Providing Hope and Service to Hawaii's Rural HIVers

Rural Hawaii, although strikingly beautiful, is not a particularly ideal place for people living with HIV. As in all rural areas, there is a lack of doctors who have the level of specialization necessary to be effective HIV healthcare providers. Add to that a general dearth of financial and social resources, and the prospects for quality care appear to grow dim for HIV-positive people in the island state's less-populated areas.

This is the bleak environment that Wing, an HIV case manager and registered nurse, spends each day trying to improve. With the help of local doctors and physician assistants, Wing has spent the last 14 years designing individualized treatment programs for her clients, often conducting home visits when necessary. If her clients need her five days a week, she visits them five days a week -- and if they need help on weekends and she can't be there, she finds a service provider who can.

When clients needed a medical service not provided in their rural area, she has arranged transportation, even if it meant flying them to another of Hawaii's islands. Under collaboration initiated by Wing, a local pharmacy began allowing HIV-positive people without insurance or cash to get free medications; the cost is billed to Wing's agency instead. It is that kind of creative thinking, and her unyielding desire to leap islands for her clients, that has won Wing an HIV Leadership Award.

PRACTICE

How long have you been working with people living with HIV?

Just after nursing school, I worked for a hospital in San Francisco. I noticed a lot of nurses and other medical providers refused to go into patients' rooms just because they had HIV. Often, a patient's dinner tray would sit out in the hallway because no one would take it into him. I suppose I started there. I didn't understand why trained medical professionals would act this way. I would take what patients needed into their rooms and try to make sure they were comfortable.

I officially started working in direct care for HIV-positive patients in 1986 in San Francisco. In 1991, I moved to Kona, a small rural town in Hawaii, where I have cared for HIV-positive patients ever since.
"Kona is such a small and rural area, and there is still a lot of stigma and judgment. I provide a judgment-free, safe space for people to talk about all the issues affecting their lives."

Can you describe how your work has changed since you first started?

I think the biggest thing is that no moss grows under your feet. You have to stay on top of everything. Information about HIV is constantly changing -- medications, treatments, and prognoses -- change all the time. Keeping abreast of all information is challenging, but in a very interesting way. It really keeps you learning and interested in learning. After all, constantly updating your knowledge is vital to people's lives. I'm often reminded of the quote by Johns Hopkins, "You live as long as your doctor is smart."

Also, I used to go to a lot of funerals. Yes, people still die, but it's not taken for granted any more. It's a chronic, manageable illness. There are a lot of challenges for treating chronic illnesses, but so long as I keep studying, I'll be able to help my clients more.

The science of HIV treatment has changed so much, but I've been very lucky to work with incredible physician assistants, doctors and other medical professionals in Kona and Oahu. As a result, I've been able to help people understand what they're taking, why they're taking it, what their options are, why they should be adherent, what they need to do to address side effects, etc. Also, the more we learn, the more things we can you do to help them stay in appropriate treatment. Anything we can do to help in that regard is great because that's what makes the difference.

If I were to follow you over the week, what would I see you do at work?

I go to people's houses to set up medication regimens and schedules for them, especially if it's gotten too complex for them to manage. I do benefits stuff such as help with Social Security disability applications and Quest, which is insurance for the uninsured and sick in Hawaii. Most of all, I listen. Kona is such a small and rural area, and there is still a lot of stigma and judgment. I provide a judgment-free, safe space for people to talk about all the issues affecting their lives -- those related to HIV and those that compound HIV -- not just medications and medical care, but really talking about how HIV has impacted their lives.

It's important to listen to people talk about what impact the virus has on their life, especially in Kona where it's small and rural and there is a lot of judgment. People with HIV need a safe place to talk about what they feel, not just meds, but about what HIV means in their life. I try to provide a safe haven to talk to about what's going on in their lives and of course I try to have a good time with them, too. I've known some of my clients for a really long time.

"Being able to help people negotiate their way through the medical and benefit system within a scarcity of resources is extremely rewarding."

What's the best thing about your job?

It's hard to say. I have a very good rapport with clients. It's fabulous to be able to be in a field where you make a difference. In a rural setting, there are not a lot of resources for folks. Being able to help people negotiate their way through the medical and benefit system within a scarcity of resources is extremely rewarding. It gives you a sense that you are really able to help people.

What's the worst thing about your job?

Most of the time my job is so great, but watching clients' health break down and watching them leave work are both really heartbreaking. It's quite a loss for the clients. They experience a loss for their role in life.

As I treat clients, many of them come to be friends. Watching these people, as friends, lose their sense of self, their sense of purpose and lose their battle for their health (and knowing there are no more rabbits to pull out of hats) can be really trying. Watching someone that you care for break down when you're just looking for something to improve their lives and ease their suffering is really disheartening. I spend lot of time looking for new treatment news that may quell their suffering, but no good news comes. Sometimes, you have to accept that letting go and knowing that the best thing you can do is just be present for that person and solve the little issues that come up. I don't want the client to see that it's hard for me because I don't want to give him or her that burden.

It is difficult to address one's own grief without burdening the client with that grief. As a client slips away and sometimes dies, you cannot skip the grieving part. You can't pretend that people don't die. If you can't do that, then, you're not emotionally available in the first place.

The next hardest thing is that some people really need a lot, but there really aren't a lot of resources for people in financial need, people who are dual and triple diagnosed, etc. It's very difficult to find them the best support. Being able to help people with all these complicated situations is extremely difficult.

What have been your greatest successes in your work? Greatest failures?

My favorite success was a gal who, when I first met her, was in the hospital. She was so ill that she couldn't even speak. The hospital was able to treat her toxoplasmosis. After she was released from the hospital, she went to a nursing home. She wanted out and she was released. She had a lot of problems being adherent. She wanted to be, but she had a lot of problems. She just couldn't handle it. I used to go to her house during the day and found a program that went there on the weekends. Helping her through her adherence really made a difference and she became compliant. Eventually, she met a guy who married her and he became her med coach.

As for my greatest failure, some folks are so scared to have anyone know their status that they can't access the help that they need. Some women won't use their real name. Everything's set up under an assumed name because they are so disenchanted with the medical system. I had an older woman who was 72 who died in February. I could never figure out meds that she could be adherent to. She would start on meds, stop taking them, and then she would become resistant because she wouldn't remain adherent. She'd decide she was going on a structured treatment interruption without consulting a medical professional. I always felt frustrated that I couldn't figure out some combo of drugs that would work for her, and she died.

What is the biggest challenge you face as a case manager/social worker? Would other people in your profession give a similar answer?

I think the biggest problems are that there isn't enough money or enough providers. You often find yourself asking, "How in the world am I going to pull this off." I think other people in social work would say the same.

For the most part, what do you think is the biggest risk factor for HIV? In short, the biggest risk factor for HIV is being a human. What's really hard about HIV is the feeling that we all crave, intimacy, is so often expressed in sex. The thing we're most drawn to puts us most at risk. Being completely safe is difficult -- people don't think they're at risk, they have self-esteem problems and mental issues. There's a lot about sex that is wonderful and really compelling, but it doesn't have to do with the frontal lobe. When sex is involved, people lose logic. You have to be pretty dedicated to safer sex.

What is the most important, memorable or useful thing you have learned from the people you work with?

Being able to appreciate life, not what you acquire, not what you buy in a store or own, but the ability to appreciate the small stuff. You have a good life because you're still alive. It can be as small as you still get to see the sunset.

I don't know if I would have had my daughter if I hadn't realized that you should take life as it unfolds. She was an unexpected pregnancy from a one-night stand. Sometimes life unfolds unlike you expect, but if you have life, it's a great gift. There's life right in front of you and you have the opportunity to embrace it.

How do you maintain a positive outlook and avoid burning out?

You have to accept that you're not in control of the situation. You do the best you can, and you work as hard as you can. People's lives belong to them, and you're not in charge of the outcome. I have a great group of people that I work with. I feel like I can be honest in a work environment like this. Also, working in this field, it is okay to say, "I think I'm not seeing this." You can ask someone about their take on a situation. All of that relieves stress.

If you weren't a social worker, what would you be?

If I weren't doing my current job, I would be teaching Pilates. I not only find it very relaxing for myself, but I enjoy teaching others how to do it. I've been teaching it part-time for five years now.

Do you see a lot of women now? What are their lives like? What kind of services do they often need that is different then the services men need?

Women do need different things. Women worry about how their status is going to affect their family. I see a lot of situations where women take care of themselves last and everyone else in their lives first. Also, doctors are trained to use pharmaceuticals designed for 180-pound men. If you're a 110-pound female, how can you be certain that medication and treatment are properly calibrated for your body? The dosing may not be right for your body. It's difficult for women to get all of their medical needs met. We've known for a long time that testosterone replacement therapy is important for men, and I can't imagine that things aren't going on similarly in women.

I've always had a small group of women as clients. Out of 80 clients, I have 10 women.

What do you think are the biggest problems people living with HIV face today?

The medications are extremely tough. For these meds to work, you have to be adherent, and being adherent is challenging. It's very challenging to live with a disease that is traditionally seen as fatal. You can see that your life will be long, but you can't buy life insurance. It's hard to wrap your mind around everything that affects you that doesn't affect the general population. Sometimes, it's just plain difficult for people to accept that they have this medical condition. But if they don't, how are they going to survive?

Do you work with any particular population of people? What are the specific challenges these people face?

There's a lot of cultural diversity in Kona. For the Hawaiian population, traditionally, you don't go to the doctor unless you're sick. You don't want to do that with HIV.

When I first moved here, it took me a year to realize that I needed to learn the art of storytelling. For local people, storytelling is a way of life, and the people that they access services from have to be fluent in it as well. You can't run around and be very efficient and act like a medical provider or case manager on the mainland. You need to sit down and talk about land, weather and ocean. If you can't, they're not going to come and talk to you about their health and private issues. I've learned to talk like the islanders talk to provide them services.

AWARD

Who would you dedicate this award to if you could?

I wish that I could dedicate it to my friend Roger in San Francisco. He's the reason I started in this field. He was the first good friend I had with HIV and then AIDS. He died in 1991.

PERSONAL

Where did you grow up?

I grew up in New York City until I was nine years old. After that, we moved to Princeton, New Jersey, where I lived until I was 16. Finally, my family moved to Kansas City, Missouri until I was 18.

What did you want to be when you were a kid?

I wanted to be a ballerina.

What kind of work do your parents do?

They're both retired and in their mid-eighties. My dad is an Episcopalian bishop. His presiding bishops asked him to offer opinions on gay men in the priesthood, and he decided in favor of gay men being ordained. My mom worked in the Red Cross as a social worker.

When did you decide you wanted to be a social worker?

I'm a registered nurse. I became a nurse in San Francisco. When I came out of nursing school, I felt like I had information and knowledge to spread to the masses. I knew I could help people. I had studied a skill that could help people.

"The biggest risk factor for HIV is being a human."

What other jobs have you had?

Well, I currently work for Hawaii Island HIV/AIDS Foundation (formerly West Hawaii AIDS Foundation) Kailua-Kona, where I've been since 1991. Prior to here, I worked at Hillhaven Health Care (now Life Care Center of Kona), Kailua-Kona.

I was a RN at Pacific Presbyterian Medical Center, San Francisco. I also worked as a LVN at San Francisco General Hospital, and I was a LVN at Chinese Hospital in San Francisco. Before my nursing days, I was a manager at the Golden Gate Nursery.

What made you decide to do this kind of work?

Roger, my close friend who died of AIDS in 1991 brought me to work in HIV. He introduced me to people in ACT-UP. He brought me into the HIV-positive community in San Francisco. I knew I wanted to help and here was a group of people who needed it.

Who were the most influential people in your life, both professionally and personally?

Besides Roger, I had friends in ACT-UP who really lit the fire I have for this work. They helped me find the information that I needed for my clients. People's survival depended on what was happening, and there was always a lag between discovery and dissemination. The people who ran Project Inform also gave me a great deal of inspiration.

What do you do in your spare time?

I teach Pilates. I'm a hula dancer. And I'm a mom.

Can you talk about your family?

My daughter is 11. My husband is a pharmacist. His pharmacy was the first pharmacy willing to make an arrangement with our organization whereby the pharmacy would help people who couldn't afford medications. Instead, they bill us. I have a dog named. She's a mutt with four white feet. My cat's name is Allison.

Where do you live? What kind of community is it? What do you like/dislike about it?

I live in Kona, Hawaii, which is one side of the island. It's a diverse, but rural community. A lot of services are on the other side of the island, which can take two hours to get to. The community here is tightly knit.

One of the challenges of the islands is the lack of comprehensive medical services. For example, there isn't a hand surgeon on the island of Hawaii. Recently, I had a client slice open his hand, and he severed a tendon. He went to the emergency room, but they couldn't surgically repair his tendon. Instead, they had to send him to another hospital on a different island. There are no bridges or ferries between the islands; therefore, to go to another island, you have to fly there. To access services, you sometimes have to change islands.

If you could live anywhere else, where would you live?

I'd have to go someplace rural and warm, but I don't know where it would be.

What's the best vacation you ever had?

My best vacation was when I went to France, Switzerland and England.

What's the biggest adventure you ever had?

The biggest adventure I ever had was moving to Kona.

What's currently on your bedside table for reading?

Two things -- a book about mothers and daughters (I cannot remember the name) and Q is for Quarry.

What kind of music do you like to listen to? Who are the artists you listen to the most?

On the radio, I listen to classical, and I listen to National Public Radio. I listen to a lot of Hawaiian music. I also love Sting and the Beatles and all the baby boomer music.

Anything else you think it would be important that people reading this interview know about you?

There really isn't anything else that I can think of. I want to impart one last time that I love the work that I do. It gives me a great sense of happiness that I can use my knowledge to help HIV-positive people.

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