Despite the grueling pace and interminably frustrating paperwork that come with an endless parade of clinical trials, Sandra, now semi-retired, manages to maintain a positive attitude and to always treat her patients with compassion and care. That compassion may be both a blessing and a curse: If her patients didn't keep begging her to stick around, she'd probably be completely retired by now. Not that she'd have it any other way -- her patients are like family to her, Sandra says. The feeling is most certainly mutual.
You have been a nurse since the beginning of the epidemic. Do you think there was any way to predict its emergence?
This disease could have happened to anyone. The women's liberation movement ten years earlier could have been a candidate, but the women from that period were lucky. Something like HIV didn't happen to their movement, but women didn't want to conform to the standards of virginity, so the same promiscuity issues had come up. The women's liberation movement gave women more choices all around. Women didn't want to be homemakers, they wanted to be doctors, they became more educated. By being more educated, they became more aware, but I think they were still the recipients of luck.
Do you see any strain placed on your patients because of the stigma associated with their illness?
Privacy is an important issue. Back when HIV patients were first getting started on medications in 1985, you wanted to be extremely careful what you wrote in a patient's chart. You couldn't put anything in about them being gay or [about the results of] their antibody test. It was very closed-door back then; the stigma for the disease was so much more intense then it is today. The homosexual population was just coming out of the closet and into the mainstream, and they got hit with this virus. The patients were well-educated people, with good jobs, who hadn't told their families they were infected because of the stigma.
It's now been about two years, I think, since [the Health Insurance Portability and Accountability Act's privacy rule went into effect], establishing the guidelines for who can have access to the patient information in our studies. It may be the drug company sponsoring the study, or the government agency monitoring the study.
How did you start working with HIV patients?
My work with HIV patients was just luck. I had been a nurse in the 1960s, raised my family for 16 years, and I was doing research when I came back to nursing. I had worked some with an infectious disease clinic, and there was an opening in a study. I was doing a part-time position, which was good because I could work it around my family, as opposed to intensive care, where you work an eight-hour shift. At the time I thought that HIV was the polio of the '80s, but 20 years later, we still have not found a cure.
What is your patient demographic?
All my patients are veterans. They are in the age range of 40 to 60 for the most part, mostly men -- the women don't tend to come to our clinic, we've had no more than 5 since 1985. Sometimes we get younger patients. On some studies I will take non-vets, because they will get meds and procedures for free, but they have to have a primary doc. We won't be able to cover them beyond the study. We work with their primary care physicians to make sure they are receiving the best care. Our patients are all educated and aware; by being in the army they have all been through some of the same experiences. There are about 650 HIV patients from all over the San Francisco area. They also come from as far as Eureka and Reno; many of our patients want to go farther from home to get rid of the stigma. San Francisco has a large gay population, so many people from the area feel comfortable coming here.
Why do you think you see so few female patients?
I think women hesitate to come in, because it is mostly male, possibly they have private insurance. For a long time people didn't come to the VA because they had another doc. But when our reputation got out we got more patients, and when, more recently, many people have run out of insurance so we started to see even more patients. The medication to treat HIV is really expensive, but the VA co-pay is $7 a bottle. Most of the HIV meds are given on a month-to-month basis. There is a pharmacy right here, they provide all the necessary tools for dispensing; needles, alcohol. We did a T-20 (Fuzeon) study in 2001 or 2002. It is a shot twice a day, the drug works excellently, but it is hard for people to give themselves a shot twice every day. We have a lot of diabetes; we do all the primary care services for HIV-positive patients who are vets.
How long have you been practicing as a nurse?
Twenty-three years: three years after graduation and 20 years after spending 16 years raising a family.
Can you describe how your life has changed since you first started in nursing?
Considering the fact that I graduated in 1965, my life and attitudes have been continually changing as I've "grown up." I have a lot more life experience and look at life more realistically. I "partially" retired in May 2003 and now work two to three days a week rather than full time and that has been a change for me as well.
In terms of the changes I've seen in nursing, I started as a cardiopulmonary nurse in 1966. A lot of our heart attack patients would stay in the hospital for a week. When I returned to nursing after raising my children, we would have patients sitting up the next day. Their recovery time has been shortened considerably. This may be because the equipment has changed a lot. For example, respirators used to be huge, a significant presence in any hospital room and now they are tiny. I've seen many changes in medications as well. Good old standbys of the '60s are still being used, for example, with heart disease, a lot of the hypertension medicine has been around forever. There are obviously lots of new stuff as well. Intensive care processes have always been similar, but now everything goes into the computer, all the labs, and all the x-rays.
What do you consider to be the best part of your job?
My patients and my colleagues are the best part of my job. That's where you get your pats on your back everyday. Patients come in sick and you are able to give them something so they come back better. Many of the patients now have had HIV for over a decade. We have some patients who know the date when they got infected back in the early '80s. It is satisfaction to see them doing well. My colleagues are a good part of my job as well. We have four staff docs, and four attendings one day a month, two nurses, plus myself, LPN, social worker, nutritionist, a group of fellows (8) rotating through in teams of 4 (2 in hospital, 2 in clinic).
Do you often discuss their private lives?
Yes, our relationship becomes a trust.
What do you consider to be the worst part of your job?
Paperwork (although in research it's really "a necessary evil").
What have been your greatest successes in your work? Greatest failures?
There have been many successes in my work: each time a patient is able to enjoy some aspect of life that they weren't able to enjoy before is considered a success for me. Each new drug that has been researched and Food and Drug Administration approved for HIV has given patients new hope for their future and that gives me immense pleasure.
The greatest "failures" I have had have been when the drugs or combinations of drugs haven't helped my patients. A lot of times, when you get down to it, patients have not adhered to the medication. I count their remainders. In some of the early days, we didn't really know, and the only way to really know is to count. Sometimes they say they take them, but I've had patients who had to be admitted to the hospital, and when their medication schedule is monitored, and their health improves considerable, we know they must have not have been as compliant as they thought they were.
Sometimes drugs just don't work with a patient's body. For instance, AZT (Retrovir) when it first came out, we were giving much higher doses which turned out to be a bad idea. It is heartbreaking to see some of the patients who have tried everything. Or have taken resistance tests and found that they are immune to all HIV medications available. These patients have to just wait for something new to come out.
Research comes in cycles, once a new class has been documented, most of the drug companies will come up with a drug in that class. We have some new drugs now, but it isn't as if you have a new drug every year. Some of the new drugs are the drug companies working on combining some of the more effective pill combinations into a single pill. Eliminating the need to take a pill more frequently increases the likelihood of adherence, also changing the number of pills you have to take is critical. When you think about taking 20 pills, some as big as your pinky, and some with ridges so they feel like they got stuck, some need to be refrigerated, it makes adherence difficult.
What is the biggest challenge a nurse faces in HIV care?
Keeping up to date. Information changes so quickly, it's really a challenge. Being a research RN, I face different challenges than many other types of nurses. The VA has weekly conferences that we go to. We have a person in the central office who e-mails everything that is coming out about HIV. I try to be with patients as much as possible while I'm at work. My husband gets the New England Journal of Medicine, and I read that, and the physicians go to all the conferences and bring back news to us. The information is around us daily, and, since I work in a teaching hospital, there are always the teaching fellows (subspecialty of infectious disease) going around, and you hear about all the reasons why this or that treatment is the best for a patient.
What do you think is the biggest problem people with HIV face today?
There are different problems for people with HIV, depending on where they live. The biggest problem for people in the U.S. with HIV is probably the side effects of the available medication. I think when dealing with the side effects you have to work for the patients on a case by case basis. In reality, the brochure for a drug is a suggestion, all drugs can pretty much cause all side effects, but not in every person. I will instruct them on the general side effects that tend to be seen more with certain drugs. For instance AZT often causes nausea, and I will work with the patient to try to subdue the side effects, like suggesting they take the med with food. Whenever a patient is taking a new drug, they are specifically looking for things that are different in their body. After they hang in with the drug for a month, they will become accustomed to it. The side effects usually show up at the beginning. A lot of patients get diarrhea, and if they take Immodium one half hour before it will get better. For some patients, a drug with a horrible side effect for them may be their last chance, and they have to do what they have to do to get better. There are also patients who just don't have the ability to withstand the side effects.
The biggest problem in the developing world is the inability to get treatment and the complex problems of various different cultures. I don't think that they are as progressive as the United States in women's rights. It is more of a problem for women, but getting drugs is a problem for everyone. In many of these countries, women are sometimes thought of as second class citizens, they aren't allowed socially to demand condoms, I don't know if they even have the access to condoms. If I were 10 or 20 years younger, I might have considered going to Africa to help out. I would hope that there would be a way to get condoms in the loop so that so many people don't get the disease in the first place. There are too many people who are infected in the Third World; it is overwhelming. We can keep people alive now with medication, but we need to look more at prevention.
Do you think that the prevention efforts widely available today are sufficient? What would you change?
I would get more condoms and clean syringes available to people who need them. When you are an addict, you don't care where your needles came from. I think a lot of younger people are getting infected because they think there is treatment for HIV -- We aren't seeing as many people die from HIV complications, but from other regular diseases. In the '80s, you would see a person with PCP (pneumonia, one of the first opportunistic infections that we found) and they would be lucky to live two years. In 1982 and 1983 it was called the Gay Lymphnodes syndrome, and there wasn't an antibody test until 1985. Some of the first doctors to see this disease were dentists and dermatologists, because of skin rashes or gum disease.
Obviously, prevention efforts are NOT sufficient! After 20+ years of HIV, we continue to see new cases every week even in the United States. We need to make sure people realize that HIV acts as a chameleon and that the drugs we have today may not work tomorrow. There is even the chance we could return to treatment failure rates of the 1980s if we fail in our prevention efforts today!
What change would you like to see in today's HIV care?
We need to continue to strive for excellence in care and to try to keep the costs down so that all people can obtain care. Some of our patients are on disability, unable to work. San Francisco is a very costly city to live in. Our social workers are good about getting them into Section 8 housing. There are a few houses around the city that they can sometimes get into as well, but many cannot afford their medications.
What do you provide in terms of education or counsel for a patient who is just diagnosed?
The first thing that I do is to find out what the patient knows about HIV and how he or she feels about it. Sometimes the patients are so distressed with the diagnosis that the best course is to allow them to cry and try to assess what they are ready to hear and when. They need to know that everyone who has been diagnosed with any disease, whether heart disease, diabetes, and HIV, needs time to adjust to this new development. When they are ready to discuss the disease, I try to give them as much information as they want, have them discuss their situation with our social worker, and of course, talk with their physician.
What do you provide in terms of education or counsel for a patient who is about to begin treatment?
I try to provide them with the possible side effects of the medication or medications. They need to know how and when to take the medications. They need to know what we expect the medications to do for them and a possible timeline for those effects. And, finally, they need to have a person or persons to call if they have questions or problems.
If you are living with HIV or were to become infected, at what T-cell count would you begin treatment? What treatment regimen would you choose?
I would probably start at a T-cell count around 350. The treatment should depend upon my "viral phenotype/genotype" and what my doctor felt would be most appropriate for me.
What's the key to a great healthcare provider/patient relationship?
The key to a great relationship involves trust, communication and respect. If I don't show them that I respect them as a person, it will be hard for them to respect me. I need to know what their problems are. They need to be able to trust me. I trust that what they tell me is correct. I will talk to their physician about those situations to get them on a proper treatment regimen.
Patients need to be able to trust me so that they can tell me exactly what they are feeling. For example, if they have a severe headache, I need to understand exactly how severe it is. I try to get to know them personally as well. I give them my home number so if they have a question on a Saturday I can probably answer their question in 10 seconds. Then they can continue their weekend and, hopefully, enjoy it a little more without some question about their health on their mind until Monday. Giving them my number also gives them a security blanket, they can call the hospital, of course, and get in touch with the nurse on call, but sometimes they want to talk to someone that they know. I take care of the research; they can also call the nurse practitioner. I've gotten few phone calls over the years, but it's there for them if they need it.
How do you feel about patients who take a proactive role in their own treatment?
I think that it is wonderful for patients to take a proactive role in their treatment. My patients who take a proactive role really have kept up with HIV research and are more knowledgeable about their disease and all of the possible treatments. They are better able to ask questions and to get answers. They also tend to be more compliant with whatever regimen that they are on, which gives more favorable responses.
Do you have a favorite patient in all the time you have been practicing nursing?
I have had many favorite patients for a variety of reasons.
What is the most important (memorable/useful) thing you have learned from your patients?
The most important thing that I have learned from my patients has been to live for today! Life is just too short to put off what you want to do. One never knows if tomorrow you may walk out into the street and have a bus hit you or if you will have a heart attack, or the like. Live for today!
Your job is a highly demanding and stressful position. How do you maintain a positive outlook and avoid burning out?
When I started working with HIV-positive patients in January 1985, there were no medications for HIV, we had probably 1/100th of the knowledge we know today. People were being diagnosed with "AIDS" and dying shortly thereafter. I recognized that I wasn't going to see instant "cures" and therefore needed to develop an attitude that would enable me to continue. I decided that if I could do just one thing that would help my patient's each day, like allay some of their fears, help with their depression and listen to their problems, giving them the release that allows them to be able to go outside and actually smell the roses, I had done my job. Being able to "recharge my own batteries" was extremely helpful in helping me help others to cope with HIV.
Have you ever thought about when your career in nursing will end?
I don't see it ending soon; that's why I'm only semi-retired. When I tell my patients I'm going to retire, they ask me, "You aren't going to retire all the way?" Comments like that kind of keep me going.
Where did you grow up?
What did you want to be when you were a child?
When I was a child, a woman could become a teacher, nurse, secretary or a homemaker. I decided to become a nurse. After having an extremely rewarding career as a nurse, even though today there are many, many career choices, I'm not sure that I would choose differently. You can be on the forefront of new things that are coming out. I like helping people and interacting with people, you are on a first level arena to do that as a nurse. The physicians help them, but they are a step removed. Nurses are very hands on care, and to be real honest, nurses are very in need today. Getting a job isn't that hard, and the pay isn't all that bad. You can do public health, research, hospital, etc. When I got out of school, teachers and nurses were making the same money, but nurses unions have been much more aggressive with their salaries, and now make much more then teachers. Nursing also has a lot of flexibility; you can work part time as a nurse, and this makes it easier having a family. I don't think I would have wanted a higher paying CEO job or be a lawyer with all the added stress.
Who have been the most influential people in your life, professionally and personally?
Obviously, my parents who taught me values, goals and responsibilities, also my husband.
When you are able to get some spare time, what are your hobbies?
Some of the things I like to do in my spare time are: to travel, play golf, go fly fishing, gardening, reading, decorating.
Where do you live?
I live in the San Francisco Bay area. On a beautiful day I don't think that any city in the world can beat San Francisco. There is a lot of culture and arts and sports. It is diverse ethnically and religiously. I like the architecture, I like that your friends can be anyone. It was a nice way to raise children, because they were exposed to so much diversity that they were able to look at people as people. We live in the suburbs, because they have a few less foggy days. And, living on the peninsula, we always have parking, which is a problem in the city.
If you could live anywhere (besides where you live now) where would you locate yourself?
The mountains of the western United States.
What is the best vacation you've ever had?
I've liked all of our vacations, from skiing, camping, traveling, sailing, fly fishing and visiting the countries of my ancestors. They are all different.
What's the biggest adventure you ever had?
It's hard to think of the biggest adventure, maybe fly fishing in a remote area of British Colombia where you need a float plane to fly in. It was so serene, we stayed at a cabin/resort. They had all kinds of things you could do, one of the days there was an opportunity to take the float plane that brought us into the area to another lake. There were five of us in the group. It was very quiet. We landed, got all our gear and the pilot left. It was an eerie feeling, only about 25 people had ever been there before. The first natives (Native Americans in Canada) had been there, but no one else. There were a lot fish, I'm not very good at catching fish, but they were just biting my fly. It was amazing! It was mountainous on the other side of the lake. Then you had the lake, and you would see inlets going into forested land, but there wasn't much clearing. The brush was too thick to do a lot of hiking, we weren't going much more than a city block from the lake. We mostly stayed in the area that they dropped us. We had to wear waders because the water came up to your hips. Sometime in the afternoon, the float plane came back and picked us up. It felt like being an explorer.
What are you currently reading?
Reading Lolita in Tehran by Azar Nafisi.
What kind of music do you listen to?
Classical, country and jazz.
Is there anyone who you would like to dedicate this award to?
I would like to dedicate this award to all of my patients.