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Cyndee Burton, R.N.
Henderson, Kentucky
 


Cyndee Burton, R.N.
  Coming face to face with the inhumanity and stigma that people living with HIV in rural Kentucky faced in the early years of the epidemic propelled Cyndee Burton, RN to do something she had never done before: she started an HIV clinic that now serves more than 200 HIV-positive people.
Starting and Running an HIV Clinic in Rural Kentucky Throughout her 25 years in nursing, Cyndee Burton has always been an advocate for her patients. But coming face to face with the inhumanity and stigma that people living with HIV in Kentucky faced in the early years of the epidemic propelled her to do something she had never done before. She founded a grassroots organization of volunteers at her church and then built this organization into a Ryan White- and Centers for Disease Control-funded organization with a staff of 17 that since 2001, has cared for more than 200 people and tested hundreds more. And she did this in a part of Kentucky that to this day has people hostile to her efforts.

As Cyndee fights for equality in housing, services and care for people infected with HIV, she has to sometimes push through picketers that stand outside her clinic holding up signs that say "Shame on you." She named her clinic "Matthew 25 AIDS Services" because of the passage in this book of the Bible that starts "For I was hungry and you gave me food."

PRACTICE

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

In 1985 I became an advocate for patients with HIV while I was working in the intensive care unit (ICU). A man named Bobby, who I will never forget, was in the ICU and the nurses refused to take care of him. This bothered me. I volunteered to be his primary nurse for the duration of time he was in our unit. I became a parish nurse, which is a volunteer position within the church parish that provides referral services as well as a resource for holistic health care. Three people in the congregation had HIV, and because this is a rural area, there was no care for them for at least a drive of three to four hours. The closest care back then was Nashville, Louisville or Indianapolis.

In addition, there were no services available, no meals on wheels because they weren't senior citizens, no care at all. I started a support group and a buddy program at the church. Members of the congregation were taught to help out these sick parishioners. Yes it was easy to get people within the church to help. It was a United Church of Christ church that had many gay members. The congregation was well educated about the issues at hand. We started with six members in our support group. I realized that these parishioners would definitely need to get some sort of medical care in town. Although I had never written a grant before, I wrote a planning grant and got money for the planning stage for the clinic. The grant also funded an extensive needs assessment. I then quit my other job, and spent a year dreaming of what the clinic would look like. I then was able to get another grant to cover operations and we opened our doors in 2001.
"I recognize that it is not enough to just give a prescription and send the patients on their way."

What is the most memorable thing you have learned from your patients?

The name of our clinic comes from our patient community. Our clients really identified with the passage of Matthew 25. The passage is the one that starts "For I was hungry and you gave me food." The clients felt like it really described what we were trying to do for them. Before us, there had been no other options for HIV care in this town. We don't do anything religious with the patients, or consider ourselves religiously affiliated.

Can you describe your typical day? Does your administrative work overwhelm your nursing work?

Up until the last two weeks, I did administrative work for two and a half days a week and worked as the clinic nurse the remainder of the time. A typical day started with patients to be set up in the exam rooms. Talking with them about how they are doing, any complaints, how was it going with medications, etc., taking of vital signs and weights. After the practitioner sees them, I would perform the venipunctures for lab work, give immunizations and gather any samples of medication that they needed from this visit. I would communicate with the rest of the team about what needed to be done, when the patient needed to return, etc. If the patient is receptive, I always like to provide a good strong hug. It might be the last one they get until they return next visit.

It has been difficult maintaining the nursing care as well as the management aspect. However, with the limited funding available to small organizations, that is usually the norm. Many times I take work home, or come in on the weekend to complete management tasks. Two weeks ago, I was able to increase the hours of our part-time nurse to assume the day-to-day clinic nurse role. I will miss some of the patient contact.

What do you think is a big problem people with HIV face today?

We have a few picketers who show up at events, but they are only reaffirming their ignorance. They were there on the first day we opened. I called all my employees who were supposed to show up on that first day we opened our doors and told them they could come in the next day if they didn't want to cross the picket line, but everyone showed up.

The protestors are extremely ignorant individuals and their presence often boosts the confidence of staff that we really are doing a great service to the community. It makes our focus on education all that more important. Their presence is harder on the patients and their families because many of the things they shout or write on signs are personally directed and hateful.

Does this still go on? If so how often? Are they affiliated with some group? Does this cause many patients to avoid the clinic?

It is usually the same group. They are from a Baptist church. They show up at every community event that we have. I don't think it keeps patients from the clinic, but it does keep participants from walking in our annual AIDS Awareness walk. Many say that they just can't bear the pain and frustration it causes them, particularly those who have lost family members or partners. The protestors get closer and scarier each time they come. The police do everything they can to keep them at bay from direct contact with us, but it is very frightening for some folks.

Is there anything particularly challenging or different about working in AIDS care in a rural Kentucky? How have things changed in this community changed over the years? Have you gotten local political support or religious support from religious leaders?

The stigma remains an issue for folks, as well as transportation, not only for medical visits but socialization. Many of our folks feel isolated. The community has continued to evolve for the most part, particularly since they are beginning to see that HIV/AIDS affects us all. They now are seeing that it is not surrounded by moral behaviors. We for the most part are supported by the mainstream religious community. We continue to battle the more fundamentalist churches with our protestors coming from the Baptist faith.

The Episcopal Church provides us with free space to house our food pantry. The United Church of Christ provides meeting space for support groups, etc. Many of the churches support our secret pal program.

Aren't people afraid to go to the clinic because of confidentiality fears? How do you address that?

We intentionally located the clinic outside of the mainstream medical/health care community. This allows more privacy for our clients entering the clinic. Folks are also informed on how to enter in the back of the clinic if desired.

Anything special you do to find people with HIV and help them access care?

One of the things that we do is to offer to come to the client for HIV testing if they request. We do testing in numerous non-clinical settings around our service area.

Can you give me the name of the church that helped you start the group? Was the minister helpful?

Zion United Church of Christ. The minister, Ben Guess, was very supportive and very participatory in the process. He served as a volunteer himself as a buddy, a board member, and a support group leader in my absence. Anything he could do to help he did.

In general, can you describe how your ability to treat people with HIV has changed over the years? For instance, is it easier to care for the uninsured?

The ability to treat is multifaceted. In many ways it is easier because HIV is no longer is a terminal disease and we have so much more to offer. On the other hand, we are faced with more poverty, drug use, families and chaos in their lives. Many of our newer clients are women who have been on the fringe before becoming infected, so we have to deal with those issues, in addition to the HIV treatment.

Do you feel people walking into the clinic today feel less stigmatized by the disease? Are their relatives more supportive? Are there more options for support?

I do believe that some of our folks feel less stigmatized nowadays, but I think it is because they now have hope and are able to live a more "normal life," with easier treatment regimens and less side effects. Many more are working and feeling like a part of society verses an outcast of society.

What are the particular needs for women with HIV?

Support. The support needed to lift themselves up as important. Many want to care for everyone else before themselves. That is the way we are brought up! In addition they struggle with their future worth as a sexual partner.
"We intentionally located the clinic outside of the mainstream medical/health care community. This allows more privacy for our clients entering the clinic."

What percentage of your clinic are immigrants? Where do they generally come from?

We see a few migrant workers, most from Mexico, that come into the area for the horse racing business and tobacco crop work. I have found these folks to be very spiritual and respectful and it has allowed us to work with an awesome group of Catholic nuns who provide support to the migrant workers in our area.

Any other immigrants you work with?

We have recently had two new clients, one from India and one from Africa. It has been challenging to find a translator to help us with communication. However with collaboration with some of the Indian physicians we have been successful.

Can you tell me specifically how methamphetamine has impacted patients already infected?

Because we are in a rural farming area, the ingredients to make methamphetamine (meth) are accessible to folks, thus making it available for those who have drug abuse issues. I have had clients who have already served time on meth charges, get out and within a month are right back into it. It is a very persuasive way of life for someone who is addicted. One issue that we have seen is that people get out of prison or treatment and go right back to the same part of town, the same friends and family. It is "irresistible" to them.

Are you seeing more patients testing positive because of meth use? Tell us a little about what you think is going on and which group is particularly affected.

I believe meth makes people feel invincible. They can party all night, and don't make good decisions. I also believe many prostitute for the drug. Both of these situations definitely lead to an increase in risk for infection.

What happens if someone is illegally in the United States? Can they get treatment? How is this done?

Our experience has been that some of the pharmaceutical companies will provide medication through indigent patient programs to those without legal status and some will not. We ask our practitioner to come up with regimens that we can get medications for.

Tell me more about your spiritual commitment and how this helps you in your work.

My spiritual growth is always evolving. I am no longer a part of a religious community because of all the hate that I have seen come from churches to our patients, even though I have also experienced some really good things coming from some of the churches. I have also seen the underbelly of the church, which took some of the "magic" out for me. I have found my work with our clients to be a very spiritual experience. I choose to see the God in all people and this has been an incredible awakening for me.

How many hours do you work each week?

Averages out to probably 50.

I noticed you also provide prevention services. Is your organization one of the few providing HIV prevention in Kentucky?

We were the only CDC-funded community-based organization in Kentucky to receive the funding to provide the new science-based intervention. I strongly believe that adding prevention into HIV care is the way to go. It takes an HIV-positive person to infect someone else. If we can empower them to take responsibility for that in their risk behaviors perhaps we can reduce the number of new infections.

What is the best part of your job?

It has given me the ability to practice holistic medicine. I recognize that it is not enough to just give a prescription and send the patients on their way. I enjoy connecting all the pieces together for our clients -- food, shelter, good mental health, etc. For instance, if they aren't connected to support services, they won't be able to fill their prescriptions. We have tried to make our clinic a one-stop shop (a phrase I hate to use) by offering everything from testing and education to contacting services on behalf of the patients.

I strongly believe in educating our patients to take an active role in their treatment. I take pride in our unique resources; for instance, finding funding for the patients, having access to a food pantry, sending a van for transportation if they cannot get to their appointments any other way. We try and knock down as many of the barriers to coming in for care as we can.

If you were infected with HIV when would you start treatment?

I would start treatment at a 350 T-cell count. The simpler the treatment regimen, the better. I have realized through observing my patients that the simpler the treatment the less they have to think about their illness. Every time they take a pill they are reminded of what they are living with.

What do you provide in terms of education or counsel for a patient who is just diagnosed?

In terms of my advice to my patients, several years ago, people were immediately put on medication, and now some of those patients have become ill from being on meds since as long as 1981. I give the patients options; through the education we provide, patients are able to make their own decisions. The majority of patients at the clinic do choose to go on medicine, whatever their regimen. If they decide to reject medication we just support them and make sure they are comfortable -- I consider the decision to be similar to a cancer patient's: They have decided they've had enough and I sympathize with their struggle.

Do you really feel that medications today are as difficult to take as they used to be? What kind of patient rejects medications? And what do you do for patients who believe that the CIA created HIV to kill blacks or other strange stuff?

We have many clients who have been on medications for a really long time. Drug resistance has been an issue for some. Even thought the medications have become less toxic, easier to take and with fewer side effects some get pill fatigued. I have has folks say; "I'm just tired." We certainly try our best to educate, support and make it as easy as we can. When your last ditch effort is shots twice a day with medications that leave sore angry places on your stomach, legs and hips it is just not worth it for some. We try to support our patients in their decisions, however that means making them educated in order to empower them to make educated decisions.

For those with the paranoid fears of the CIA, invasions from space, and all the other things I have heard, we refer to a mental health provider!

Since you have worked in HIV for a long time, can you describe your experience in the initial years? How did you handle having so many patients that you had nothing to offer in terms of treatment? Were you more stressed out in those years than now?

In the initial years I believe I was energized many times by the anger I felt with the medical community that I was a part of. I was appalled to see so many pass judgments on ill people and succumb to their fear. It made me a stronger advocate. I also have some really strong memories of how awesome it was to be a part of the healing that many families and patients experienced during those times. For those who were turned away by their families it was very spiritual to see the others in our community reach out to them and include them in their own families. These were the things that we could offer, even if we could not offer a cure for the disease. Our church community called these folks "the wounded birds" and embraced them into a very special group in a very special time and place.

AWARD

Who would you like to dedicate this award to?

There was a man named Amon Terrill who was a good friend of mine. He was a nurse, and when I graduated from nursing school he was teaching. Years later, when I started the clinic, he showed up as a patient. He taught me many life lessons. He taught me a lot about being a good AIDS nurse, but also, because of his background in nursing, he was able to relay information about his illness to me in my own terms to help me understand better what he was dealing with. He never gave up -- he took meds until the day he died. He passed away last year.

PERSONAL

Where do you live?

I moved here for my first marriage. We had a child, got divorced, and I was getting ready to move back to Florida when I met my second husband. He had four girls, so my family grew much larger, but all our children are grown. The youngest is 27, from 31 to 27, with a set of twins. We have five grandchildren now and we love them all very much.
"I am no longer a part of a religious community because of all the hate that I have seen come from churches to our patients"

What kind of community is it?

Henderson, Kentucky is a fairly small town, a rural environment. We are very close to urban centers such as Owensboro, which is the third-largest city in Kentucky, as well as close to Indiana and the city of Evansville. I used to work in Indiana because it is so close. We are able to maintain a rural feeling, but we are accessible to urban areas. My husband and I live in a circa 1895 farmhouse. It's out in the country. We have a garden where we grow veggies and herbs and I have a perennial flower garden. We are able to eat from the garden all year round; we freeze the vegetables and eat them all winter long. We've done a lot of work to the house. It's an ever-evolving project; we've lived here for 18 years. It seems like every time a project is finished, we have to go back and repair something we just fixed. My favorite part of the constant evolution is that when the house is messy, we can blame it on the renovation and comment to guests to "please excuse the mess, because we're still working on the house."

What do you do in your spare time?

We go camping a lot. We're close to mountains, the Smokies. The whole family used to go, and now our children's families go as well. We are still sleeping in tents. Maybe when we get a little older, we'll get a camper, because the older we get, the harder it may become to sleep on the ground, but we still like to hike in and camp for now. Sometimes the whole family goes, and it becomes harder to visit remote sites with the little ones involved -- we have to go to campsites with amenities. We also enjoy the water. We go canoeing; I enjoy the solitude of the experience.

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

I have always dreamed of having a sailboat, and traveling around the world. I would like to explore islands, hopefully uninhabited. Any island will do, they don't necessarily have to be tropical, but the warmth would be nice.

What has been your best vacation?

My husband and I went to Colorado and camped in the Rockies and rode horses, and then we spent two days white-water rafting. It was a little uncomfortable sleeping on rocks, and I still remember the saddle soreness, but it was so beautiful. You can see so many things you can't see when you are walking. For instance, all the different rocks that make up the mountain, and all the beautiful formations and caves. The sky is a remarkable blue out there. I remember thinking that this is how it was before people came and ruined so much of it. The rafting was also a lot of fun. It was in the Colorado River, which was incredibly cold. It was a wild ride; one minute it was serene, and you could look around and admire the scenery, and the next minute you were roaring through rapids, with fear and conquering. We met some great people in the raft. We all had to work together.

What kind of music do you listen to?

Mostly folk and instrumental music. I like James Taylor and Peter, Paul and Mary. My mind goes all day long, and I just want to go home and listen to something soothing that I don't have to think much about.

What book are you reading? What book would you say has had the most impact on you?

I'm reading Time Traveler's Wife, and it's really good. It is a first-person narrative of a man who travels forward and backwards in time. One of the books that has been most influential was Cultural Creatives. I feel this book is a good representation of where we are with our energies in the United States, with the Republican party running the government and ruling over the population. It is a call for a move towards caring for the environment and the people that make it up. It is an argument for a more peaceful world where people can live simpler lives.

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