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Guy Vandenberg
San Francisco, California
 


Guy Vandenberg
  Guy Vandenberg is a Netherlands native whose experiences at a San Francisco HIV hospice inspired him to dedicate his life to HIV nursing -- and particularly to care for those who lack the economic means to take care of themselves.
A Dutchman in San Francisco: HIV Nurse and Educator When Guy Vandenberg graduated from an alternative university in the Netherlands with a dual major in two wildly different subjects: social work and organic agriculture, it was not easy to find a job combining those two fields.

Serendipity struck when Ron, his partner at the time, found out about a community in rural Pennsylvania for people with developmental disabilities that needed a person with just these talents. Camphill Village was the place; when Guy and Ron began managing the organic farm, they became the first gay house parents of the community. Guy says he had never worked so hard in his life.

Four years later, Guy and Ron moved briefly to New York and then to San Francisco, one of the epicenters of the U.S. AIDS epidemic. The year was 1989 -- and the epidemic was beginning to kick into high gear. They got jobs working as hospice attendants taking care of the dying. "You have to remember," Guy says, "In those days, everybody with HIV died." He worked at the hospice for six years -- during some the worst years of the epidemic in the United States. Watching the hospice nurses calmly and confidently help family members of the dying, Guy was inspired to become a nurse. While working at the hospice, he completed nursing school.

From the first, Guy's nursing was focused on some of the poorest people with HIV. Many of his patients deal with multiple issues besides HIV: many are former intravenous drug users, homeless or recently released from prison. They often have other illnesses in addition to HIV, such as hepatitis C or mental illness. Guy emphasizes the importance of engaging his patients on a human level first. "Trust is not a given," he says. "You have to be honest and direct. You have to teach people how to take care of themselves. If people believe the treatment will change their outcome, they will change their behavior and adhere to their medications."

HIV-positive patients are not the only people whose lives Guy has changed. For years he also provided continuing medical education to healthcare workers who take care of incarcerated people. Many of these professionals were general practitioners who knew little about HIV, but suddenly found themselves dealing with a growing population of HIV- and hepatitis C-infected inmates. Guy gains deep satisfaction from teaching others how to care for people with HIV, he says -- so much so, in fact, that when The Body notified him about his HIV Leadership Award, he was about to leave San Francisco for a small village in South Africa, where he was to spend six months training nurses how to care for people with HIV.

ON THE JOB: NURSING AND HIV

What made you decide to go into HIV care?

My friend Charles Harper got sick. I started reading about "GRID [Gay-Related Immune Disorder]," AIDS, HTLV [Human T-Lymphotropic Virus]-IV , LAV [Lymphadenopathy-Associated Virus], etc. Then HIV was isolated and we learned how it was transmitted. Around this time I reconnected with Robert Gorter, a Dutch physician I knew who had moved to San Francisco and worked at UCSF [the University of California-San Francisco]. At his invitation, in 1988, I moved to San Francisco, and with his help my partner at the time, Rob, and I got jobs at Visiting Nurses and Hospice. I worked there full-time for six years, and completed nursing school during the last four.

"The successes I cherish most are when I am able to connect on a profound human level with my patients, when I witness their healing or when I can help to alleviate suffering."

Why did you decide on nursing school?

After working with the hospice nurses at Visiting Nurses and Hospice and at Coming Home Hospice, I became convinced that I wanted to learn to do what they did. You have to remember: In those days, everybody with HIV died. Working as a hospice attendant, I saw about one patient die every week. At Coming Home it was more like three per week. The nurses were able to do so much to ease the anxiety, pain and discomfort, it was magical. These women (they were almost all women -- and lesbians, with the exception of a grey-bearded guy on a scooter named Rex) were -- and continue to be -- my role models. One day, when I was working as a hospice attendant in the home of a patient who was close to death, the nurse came in and within five minutes had calmed down and comforted the patient's extended family and also soothed the patient's anxiety and pain. She was calm, confident and completely unassuming. The patient died peacefully later that day, surrounded by his loved ones.

How long have you been a nurse?

I have been a nurse since 1994. My very first nursing job, fresh out of school, was at Continuum HIV Services, an incredible agency in the Tenderloin neighborhood of San Francisco. I stayed there for 11 years, until I resigned last month [in March 2005] to start working full-time for half a year for UCSF in South Africa. But I'm still a consultant at Continuum.

I also worked per-diem for San Francisco General Hospital [SFGH]'s AIDS and Oncology inpatient Unit 5A for six years, for Hospice by the Bay and, since September of last year, for UCSF's HIV outpatient clinic (Positive Health Program) at SFGH, Ward 86, where I did triage. All of these places serve many of the same clients, or at least with very similar characteristics: low-income/no-income men, women and transgender individuals living with HIV, the majority of whom are multiply diagnosed, racial or sexual minorities, homeless or currently/recently incarcerated.

Can you describe how your life has changed since you first started in nursing?

Let me think: Even less time for sleep? A different relationship to bodily fluids?

I guess I learned more than I did as a social worker! On the other hand, complete strangers start disclosing their medical problems to me at parties. The wealthiest folks often seem the most shameless about trying to get free healthcare advice. Imagine asking a plumber to take a quick look at your sewage problem while s/he is attending a party at your house!

In all seriousness, becoming a nurse has changed my whole life, and mostly for the better. I have loved all of my jobs as a nurse, and I have grown a lot.

Nursing itself has changed, too. I was trained in an inpatient "primary care nurse" model, where one nurse was responsible for all aspects of a patient's care, from starting and running IVs [intravenous fluid tubes], to patient teaching, to helping a patient shave. One nurse would have between three and six patients. That was a great way to do care and get to know your patients, but probably way too expensive. Then, right as I graduated, the "team nursing model" was re-introduced, and hundreds of RNs [registered nurses] were laid off to be replaced by nursing assistants, LVNs [licensed vocational nurses] and hospital technicians. This model is certainly more efficient and cost-effective, but I do feel that some of the good aspects of the old model of care were lost in the process.

What's the best part of your job?

Doing direct patient care is always at the top. I love the one-on-one interaction with another human being, especially if I'm able to soothe or comfort a patient. Those are such old-fashioned words, aren't they? Nowadays it all seems to be about "clinical pathways," "algorithms," etc. I'm all for that, but we cannot forget that the ultimate purpose is to alleviate suffering and promote health.

I also love to teach. The best part of the nursing profession today is perhaps the flexibility: I have worked in inpatient settings, acute care, long-term care and in hospice, outpatient, clinic-based, street-based settings. I have worked in jails and prisons, and I've taught classes and consulted in jails and prisons all over the U.S. And I'll be mentoring nurses in rural South Africa for half a year. There aren't many jobs that allow you to do all of that. I haven't yet tried working on a cruise ship or med-evac helicopter!

And the worst part of your job?

Systems that are inadequate and bureaucratic, and that hamper the delivery of patient care. For example, every time I give someone a hepatitis A or B vaccination in our outpatient clinic, in addition to writing a narrative note that lists the vaccine's manufacturer, lot number and expiration date, I am required to log the injection in four -- four! -- different places. In the time it takes to do this mindless, duplicative work, I could help several more patients.

I am strongly in favor of accountability and proper documentation, but it needs to serve to safeguard and improve patient care and be realistic. When I was the program director for transitional programs for HIV-positive inmates, I would often have to respond to bureaucrats who had never set foot in a prison or jail, but presumed to change and micromanage programs that were quite effective. The sheer waste of time and resources in trying to meet these people's criteria and respond to their often-nonsensical recommendations almost drove me to despair.

How do you maintain a positive outlook?

The one-on-one human connection is what keeps me going. The simple effort of just being present with someone else is very powerful. It is not always easy, but it is always very energizing for me, whether it is in prison, in jail, in the street, in a clinic or at a cocktail party. Discovering the other person is the most rewarding experience, and it is the greatest gift because it is always there!

What have been your greatest successes?

Since 1996, I helped to start, and then directed, five programs for underserved and marginalized people living with HIV/AIDS, all of which are still in existence today:

  • Two state-funded case management programs for people who are severely disabled and/or homebound with AIDS;

  • One program for homeless, marginally housed and multiply diagnosed people with HIV; and

  • Two programs for HIV-positive inmates (one for the state prison and one for San Francisco county jails).

Over the years these programs have helped hundreds of patients gain access to medical care, housing and services and start breaking the cycle of drug use, homelessness, re-incarceration and despair.

The successes I cherish most are when I am able to connect on a profound human level with my patients; when I witness their healing or when I can help to alleviate suffering.

"Why is it morally reprehensible to provide injection drug users with clean works, but not to lock them up without providing any treatment?"

What education or counsel do you provide to newly diagnosed patients?

I would probably do a lot more listening than talking at that point. But I'd tell them to try to remember that this does not mean that they're sick or dying. If classes or support groups for newly diagnosed people are available, I refer the patient there. I also explain the importance of regular primary care, labs and follow-up. I review the characteristics many long-term survivors have in common and try to help the patient in assessing if s/he could make any lifestyle changes that might be beneficial for their immune system and overall health. This can also help to make the patient feel that there is something s/he has control over. But I caution against doing too much too fast. Finally, of course, I address the potential issues around partner notification and prevention for positives. Newly diagnosed patients also need to explore when and how to talk about the new diagnosis with family, friends, co-workers, employers, etc.

What about for a patient who is about to begin treatment?

I review what has led her or him to this point and this decision. I use some motivational interviewing techniques to assess and reinforce his/her treatment readiness. Then I get practical: "What kind of pill-taker are you? What do you care more about: the number of pills, or the size? What potential side effects scare you most?" And finally, I talk about the actual pill-taking: "Think of some things that you do every day, preferably around the same time each day. For example, in my case it would be brushing my teeth. The world can be falling apart around me, but at 7:30 a.m. I'll still be brushing my teeth. So whenever I have to take a daily medication, I put it right next to my toothbrush."

What's the key to a great healthcare provider/patient relationship?

Time and trust! As with any other relationship, it takes time to get to know each other and to build trust. Most patients I see do not have a history of getting regular primary care. Very few had a family doctor. Most used home remedies, and if something was really serious they'd use the ER. Having been diagnosed and/or being incarcerated marked the first ongoing exposure to medical services for many patients, but that doesn't necessarily translate into trust. Providers have to be patient and show genuine, nonjudgmental interest. Patients have to feel safe and take small leaps of faith. Both have to accept that they may not always agree, and working through conflict or disagreement can actually do a lot to advance the relationship. Self-deprecating humor helps too.

How do you feel about patients who take a proactive role in their own treatment?

All depends on what you mean by proactive! The woman who tells me that she wants to start interferon and ribavirin therapy, stopped drinking alcohol, has been studying websites dealing with HIV/HCV co-infection and that she started taking milk-thistle but decided not to take St. Johns wort because of potential drug-drug interactions will make my day. But then there is the guy who tells me that he swapped his Kaletra for the Sustiva his cellmate is taking, because he decided that he had reservations about PIs and likes the lucid dreams he gets with Sustiva. This does not exactly make me happy. There is being proactive and then there is being proactive. I see a lot of both. ...

You say you like to teach, how do you use this skill with patients?

Treatment is teaching patients to take care of themselves. What's really important is that a patient knows what's going on with his or her body. Ultimately the patient is doing the work. The patient is the one doing the healing. So as a nurse you're there to facilitate the process. Nursing and teaching are very interconnected. It is always a discovery for me as a teacher to see what will work. There is an aspect of nakedness to people who have HIV and are homeless. But if you treat people with respect and dignity it's not hard to teach them how to take care of themselves. I have seen homeless, drug addicted people have great adherence and I have friends who work full time who are terrible. At Continuum we have peer educators who do home visits and take people to appointments and teach them about treatment.

What are the latest educational events you have or will be involved in?

The first is the AMFAR National AIDS Update Conference in Oakland in April 2005. There were many folks from Africa, and I helped host a special all-African evening. I also hosted a pre-conference all-day seminar on HIV and corrections. The second one is the annual Centerforce Summit in San Francisco. We will be presenting a two-day pre-summit certification course for transitional care providers. To learn more about this, please visit www.centerforce.org/.

Do you have a favorite patient in the time you have been practicing nursing?

What many of my favorite patients had/have in common is that they faced multiple challenges in life, often from early childhood on: Fetal Alcohol Syndrome, abuse, neglect, discrimination, etc. For most of them, HIV was just one more thing added to a list of horrendous stuff. What touched me most about them is their courage, dignity and their often incredible sense of humor!

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

Resilience! They taught me that many humans have an astonishing will to survive almost anything life throws their way. I have also learned that some of the coping skills they developed in this process may be extremely frustrating and irritating for providers! Even if the behavior has long lost its usefulness and even if it has become counterproductive, it doesn't help to get angry about it.

What do you think is the biggest problem people with HIV face today?

If we're talking strictly about HIV, and we're talking strictly about the U.S., I'd say: adherence. Adherence is incredibly difficult! Adherence is also what makes or breaks the long-term survival of medications. That's the truth today. Of course, all of this will change once a cure is developed (I will never give up that hope). On the other hand, if current trends continue, access to medications could become a bigger problem than adherence. Now, if we're talking about the biggest problem facing people with HIV today worldwide I would say: access to medications.

What change would you like to see in HIV care?

I would change the service delivery model for HIV to a chronic disease model. We have to accept that we're into the third decade of this pandemic, and while we don't have all the answers (and still don't have a cure), we do know a lot more than we did in 1985. We know a lot about what works in prevention, and we know how to save people's lives if they do become infected. Now we need to make these technologies widely available.

I'm not at all advocating that we abandon the search for a vaccine and/or a cure, but I think we should accept that we're in this for the long haul. We should stop operating in crisis mode and patching stuff together, and instead integrate everything that we've learned and that works well in HIV care with everything that we've learned and that works well in the rest of health care and social services. It no longer makes sense to have separate (and unequal) parallel systems for HIV and everything else. Model HIV care after diabetes care, renal clinics, oncology, etc. I think it would be more cost effective and help to further de-stigmatize the disease.

I also believe that providers who treat HIV should pass a specialty board examination, just like nephrologists, oncologists and cardiologists have to do for their specialties. The American Academy for HIV Medicine has made some steps in the right direction.

What do you think is the biggest risk factor for HIV?

The biggest risk factor for HIV is complacency among the general population and the media. We could debate the relative impact of specific risk behaviors forever: in Eastern Europe and Asia, needle use seems to be the prevalent mode of transmission. In San Francisco, it is unprotected sex between men. In most of Africa, it is unprotected heterosexual sex. But barely concealed below this surface of risk behaviors are the demographic risk factors. It's the same old list: race, poverty, gender/gender identity and sexual orientation.

Do you think that the prevention efforts widely available today are sufficient?

Well, first of all: what prevention efforts are really widely available today? Abstinence counseling? The most recent data are not very encouraging about the effectiveness of these curricula, nor about the accuracy of the information contained in them.

Programs to promote faithfulness? I am not that familiar with these, but I don't believe that they are that widely available or (given the current divorce rate) all that effective.

Drug treatment for drug abuse? Not exactly "widely available"! That leaves us with condoms and needle exchange, neither of which are perfect, but the best we have. However, these are not widely available enough either. And why is it morally reprehensible to provide injection drug users with clean works, but not to lock them up without providing any treatment?

I think more work needs to be done on the development of a protective vaccine and on antiviral vaginal gels and other alternatives to condoms. Condoms are great, but their use depends too much on the willingness of the partner. The female condom is a step forward but too expensive.

If I could change anything, I would use the concept of evidence-based practice as the foundation for prevention policies. I would introduce high quality sex-ed classes in middle school and high school, I would make access to condoms available to all who need them (including the incarcerated), and I would shift funding from the failed war on drugs to drug treatment programs with proven effectiveness. Finally, I would increase the number of needle exchange programs all over the country and introduce them in prisons and jails as well. The international experience shows that this can be done effectively and safely.

PERSONAL

We'd like our readers to get a sense of you as more than just a clinician. Could you share a little personal information about yourself? Where did you grow up?

Arnhem, the Netherlands -- a midsize provincial capital near the German border.

What kind of work do/did your parents do?

My dad is a painter/graphic artist and his wife (my stepmom) is a poet and retired psychologist. My mom is a retired actress; her husband used to teach at a school for drama therapists before becoming a minister.

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

I wanted to be a submarine captain (but I'm claustrophobic) or a veterinarian (but I can barely stand to watch the animal rescue shows on Animal Planet, with the abused dogs and cats).

"The patient is the one doing the healing. So as a nurse you're there to facilitate the process."

If you weren't a nurse, what would you do?

I'd probably be a psychologist or journalist. I have an insatiable curiosity and I am fascinated with human behavior. I'm actually on the very, very slow track to getting a Ph.D. in psychology (or a Psy.D.). I would like to specialize in correctional psychology. I want to learn more about how people become institutionalized ("prisonized") during incarceration and how they can unlearn some of those patterns upon their release.

Who have been the most influential people in your life, professionally and personally?

I have a long list of people who have taught me about myself, allowing me to become a better professional and a better human being. Their jobs are far from over:

  • Current and former patients: too numerous to mention (and against HIPAA regulation).

  • Current and former colleagues and friends: Mick and Britta Gardner, Helen Lin, Molly Martell, Rob Hilberg, Major Griffin-Gracy, Katie Kramer, Jo Schmidt, Pete Brito, Meg Newman, Diane Fagan, Jan Maarten Deurvorst, Vincent Cowart, Iris Parris, Cindy Dinsmore, the late Sidney Raikoski, Charles Harper and David Smith Fox.

  • Current and former bosses/mentors: Do and Leon Veltman, Andrew and Hertha Hoy, Janet Spellman, Linda Edelstein, Marcy Fraser, Kate Murphy-Shotun, Bill Glenn, Dianne Jones, Mark Cloutier, Susan Shea, Val Robb and Catherine Lyons.

  • The Glide family: Reverend Cecil Williams, Janice Mirikitani and several thousand others.

  • My stepmother: Joske Janzen

When you are able to get some spare time, what are your hobbies?

I love reading, and I'll read almost anything. As a true Dutchman, I also like bike riding (especially when it is not raining all the time like in Holland). I did the Life-Cycle AIDS ride from SF to LA last year and it was great! I would do it again if I wasn't going to be in South Africa at that time. I love cooking and eating! I also love to dance and I kind of look like Ellen DeGeneres when I do. ...

Where do you live? What kind of community is it?

The Mission neighborhood in San Francisco is a vibrant community with lots of cafés, thrift shops and used bookstores that cater to the college grads, artists, activists and other alternative types that, until recently, have been drawn to the Mission for its cheap rents. The Mission has always been home to different ethnic and socioeconomic groups. Since the turn of the last century there's been a steady trickle of Central American immigrants to the Mission, in part, because of San Francisco's trade links with Central America. Since the 1950s, the Latino population in the Mission has doubled every 10 years, lending the neighborhood much of its current flavor. My job at San Francisco General Hospital is three blocks away from my house, and I love to shop in the local stores for fresh vegetables, fish, meat and Mexican pastries. Carnaval, the Dia de los Muertes and Cinco de Mayo are big street parades and parties.

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

Well, I am actually about to leave for South Africa. Other places I have visited where I think I could live permanently, include New Orleans, Rome and Barcelona. I also love New York, Chicago and Washington DC, but I'm not sure I could handle the cold!

What's the biggest adventure you ever had?

I'm sure it will be the one I'm now getting ready for. I imagine that mentoring nurses and helping to set up HIV clinics in rural KwaZulu-Natal will not be like an ordinary day in the office. But if we're talking only about past adventures: Leaving home at 15 and living in the red-light district was interesting, and moving to the U.S. at 21 was a big adventure.

What are you currently reading? Is there a book you would say has had a big impact on you?

Right now I'm reading The Country of My Skull by Antje Krog, about the Truth and Reconciliation Commission in post-apartheid South Africa. It is a very important and powerful book, but reading it is almost physically painful, I cannot read more than a few pages at one time. So I switch to The Rise and Fall of the Zulu Nation by John Leband. Of course I'm also reading endless reams about treatment guidelines for HIV in sub-Saharan Africa.

Books that have had a big impact on me: A Legacy of Hope, the collected writings and speeches of Martin Luther King; My Own Country by Abraham Verghese; The Fire Next Time by James Baldwin; An Interrupted Life by Etty Hillesum; Max Havelaar by Multatuli; and of course the Bible (by multiple authors).

What kind of music do you listen to?

Reggae, blues, African, salsa. I really like Santana's Supernatural and Shaman albums. Right now I'm listening a lot to all of the albums by the Glide Ensemble Gospel Choir. Those are definitely coming with me to South Africa.

Tell me a little about your partner.

Steve is my husband, my joy and the love of my life. We met on Friday the 13 of December, 1991. By Christmas we had pretty much moved in together. We celebrate every Friday the 13 as kind of extra anniversaries. In 2004, after being together for 12 years, we were married at San Francisco City Hall. On Friday, Feb. 13 to be precise! We waited in line for hours, along with hundreds of other same-sex couples, many of whom had been together even longer than we had. Of course it was also on a Friday the 13 (June) that the courts declared our marriage null and void, but we don't let that discourage us. After all: We were both born in the 1960s. Back then it would have been illegal in many states for Steve and I to marry, even if we were a man and a woman, because Steve is black and I am white. Our families have always been very supportive of our relationship. Our families have integrated better than most straight in-law families I know! Steve's mom is also an RN who became a psychologist. She's sharp, she is sexy and she is funny. She is my role model!

Steve fell ill in 1999 and almost died. He woke up one morning unable to move his legs. I got him into a taxicab and into the E.R. at San Francisco General Hospital, where Dianne Jones (my former boss at the inpatient AIDS Ward 5A) took great care of him. Initially it was thought that he had a spinal meningioma, but after the surgeons excised it and sent it for pathology, it turned out to be a tuberculoma (TB-lesion). Steve's HIV antibody test came back positive, his viral load was sky-high and his CD4 count was 31. He was treated for the TB and I asked the best HIV-clinician I know in the entire world to be his doctor, even though she wasn't taking new patients at that time. There are many great HIV physicians at UCSF/SFGH, Ward 86, but I do believe that Steve is alive today because Meg Newman is his doctor, AND because he himself is such a fighter: Once he started HAART, he developed an unusually severe case of Immune Reconstitution Syndrome. He was comatose for several days, and he was completely paralyzed, blind, confused and unable to speak for weeks after he regained consciousness. I slept on a cot in the hospital those days, on the same ward where I used to work. Several physicians on the team recommended that we transfer him to a hospice facility. But Dr. Newman, and a few others on the team (most notably Dr. Charlotte Sumner and Dr. Cheryl Jay) refused to give up, as did Steve. He was treated with steroids to decrease the small-vessel vasculitis in his brain, and over the next few months made a complete recovery.

If you met Steve today, you would not be able to tell that there ever had been anything wrong with him. He is in school (taking photography and Spanish classes) and last year Steve and I did the "Life-Cycle" San Francisco to Los Angeles AIDS bike ride, together with almost 1,200 others. He is the only person I know who is absolutely 100 percent adherent to his regimen. That's why he is still on the same regimen he started with in 1999, and why his viral load has been undetectable since then while his CD4 count has climbed to 510.

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