How long have you been practicing?
I opened the first HIV clinic in Minnesota in 1985, 20 years ago. I knew from the first reports of HIV in May 1981 that HIV care was my destiny -- it was almost a supernatural experience.
Why did you choose to specialize in HIV?
I wanted to work with interesting and needy patients in a field that would be stimulating and fast changing.
Can you describe how your work has changed since you first started?
It is busier than ever -- more patients. The work has shifted from inpatient/hospice focus to outpatient clinically. Research has shifted from a desperate search for any effective HIV drug to fine-tuning already effective therapy.
What's the best thing about your job?
The satisfaction I get helping patients cope with their HIV infection and evolve into thriving health-focused people.
What's the worst thing about your job?
The worst thing about my job is the complex and morally bankrupt U.S. healthcare system.
What particular event or situation led you to feel this way?
In Chicago, I worked at Cook County Hospital and observed how other [private] hospitals dumped their patients over to "the county." I witnessed the same phenomenon in St. Louis and for the past 20 years in the Twin Cities. When you see patients referred from private doctors' offices (sometimes from doctors who are listed as the top doctors in local magazines) because these patients have no insurance, that tells me something is wrong with our system. Now I am starting to see even insured patients who can't afford their ever-increasing co-pays (one union plan has a non-negotiable 20% medicine and office visit co-pay, for example) and who have elected to stop taking their needed HIV meds in order to pay for other necessary family items. Many of these patients earn too much money to qualify for the increasingly stretched public programs. At Hennepin County Medical Center, we have the same number of nurses, the same number of case managers, the same size of Ryan White funds, and fewer social workers than four years ago, when we had half the number of patients.
What have been your greatest successes in your work?
I think my biggest clinical success would be to have always provided the best possible care to patients in Minnesota, from the beginning of the epidemic, regardless of patients' ability to pay.
My greatest research successes would include being the first to administer intravitreal ganciclovir for cytomegalovirus (CMV) retinitis, which was once a common opportunistic infection for people infected with HIV. That technique, which we developed in 1985-86, could quickly halt sight-threatening CMV retinitis. Another project I spearheaded was a program to evaluate whether newly infected patients harbored drug-resistant virus. That resulted in the first report of sexual transmission of AZT [zidovudine, Retrovir]-resistant HIV infection, and was published in the New England Journal of Medicine in 1993. In 1997, it was believed that if a patient failed a protease inhibitor-based regimen, subsequent protease inhibitors would be ineffective. Dr. Pablo Tebas from the University of Pennsylvania and I were the first to report that protease inhibitor-based regimens could be successfully sequenced using dual protease inhibitors after initial failure of a nelfinavir [NFV, Viracept]-based regimen, this was published in the journal AIDS in 1999. I was also among the first to report cardiovascular problems among patients on HAART, with two papers in Lancet in 1998.
Not having the time to do a better job with HIV prevention -- what is now referred to as the prevention for positives initiative.
In general, can you describe how your ability to treat people with HIV has changed over the years? Is it easier to give care, for instance, for the uninsured?
It is much easier to treat patients now, since I know we have so much to offer. Until now, I have always been able to treat any patient who needs it. But I fear the day is coming where there will be waiting lists and the county hospital will not be able to provide expensive medications and care to the entire Upper Midwest, which is our catchment area.
Do you feel people walking into the clinic today feel less stigmatized by the disease? Are their relatives more supportive?
Africans are more stigmatized than any population I have ever encountered. Women, African-Americans and Hispanic patients all feel quite stigmatized. Since those patient populations constitute a significant percentage of my patients, I have to deal with stigma on a daily basis. It is rewarding and encouraging to see general trends towards more support from family, worksite, friends and family. Church support, however, remains mixed overall.
From which community?
Thirty percent of our patients are women. Family and child-bearing issues are a major topic, and many are heartened to hear that it is possible for them to have children who have a low likelihood of HIV infection. I have managed more than 100 HIV-positive pregnant women without a transmission (on par with the estimated less than 1% to 2% HIV transmission rate in well-managed pregnant patients).
What challenges do your immigrant patients face?
We care for over 200 African-born, HIV-positive patients from 26 countries. Many are victims of torture with horrific life experiences. The Twin Cities is now home to an estimated 50,000 African-born persons, mostly from East Africa, while the HIV-positive patients are spread broadly from many countries. Fifty-five percent of our African-born patients are women with tuberculosis. This is by far the major coinfection we deal with. We are not at all sure how many more HIV-positive Africans are either not aware of their infection or not accessing care. The stigma felt by many of my African patients far exceeds anything I have experienced in other patient populations. Care for these patients is extremely time consuming and rewarding.
Many immigrants don't want a translator from their community to be present, so working with them can be awkward when only a relative or partner is involved. Many are hiding their HIV status from other family members or even the fact that they were married back home with children. Many are separated from their children and partners. For many of the women, all they know is that their husband died. Immigration issues are a major issue and very time consuming -- worse post-9/11 -- with lots of paperwork. I am a civil surgeon, so I become involved with numerous evaluations. I often have to educate large families about HIV and U.S. healthcare issues, which can be slow going. I have had some patients for whom we have no way to communicate -- either an obscure language or even a deaf person, who can't even communicate with their own family. I tend to get some of the more difficult cases, a practice I need to decrease due to severe constraints.
Since you have worked in HIV from the very beginning, 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?
In the early years, I recalled what I observed in training at Barnes Hospital [at Washington University in St. Louis, Missouri] on the bone marrow transplant unit. I was inspired by that experience, as well as the love of life that projected from so many of my patients.
Are you seeing more patients testing positive because of crystal methamphetamine?
The crystal meth epidemic has hit Minnesota and overlapped with a syphilis epidemic in HIV-positive people, mostly gay white men. That scenario is very frustrating from a public health perspective. Minnesota is a center for drug treatment, so we have not only home-grown cases, but persons here for treatment that then connect with HIV care while they are here. For some patients, I have been quite proud of their clinical progress from both the HIV and chemical dependency perspectives. For many others, when they relapse with drug abuse, their adherence and safe sexual practices diminish, which, of course, is dangerous to them and others.
What happens if someone is illegally in the United States? Can they still get treatment?
I am unaware of a single patient who I have not been able to offer treatment for, no matter what their immigration status. However, with cuts or no increases in federal and state programs, in the face of increasing numbers of patients, the math for the future does not look good. For example, the new Medicare Part D drug program will result in a financial tsunami for several hundred of our patients on an annual basis, as the so-called "donut" (no coverage for several months after the first months of HAART) will wreak havoc in our clinic unless some fix or compromise can be worked out.
What is the biggest challenge you face as a clinician?
How to continue access for our indigent patients to good health care, despite increasing co-pays and the fraying of the safety net for the poor and under-insured.
Would other clinicians give a similar answer?
At the county hospital where I work, yes.
What do you think is the biggest problem people with HIV face today?
In the United States, the biggest problem people with HIV face today is continued access to quality care. Globally, it is access to quality care [in the first place].
For the most part, what do you think is the biggest risk factor for HIV?
I think the biggest risk factor for HIV is ignorance and apathy.
What single change would you like to see in HIV care?
Guaranteed access to quality health care in the United States and worldwide. Improved health throughout the world would result in improved education and standard of living. That would lead to a safer and more cooperative international community that could better coordinate the problems that face humans and our planet.
What do you provide in terms of education or counsel for a patient who is just diagnosed?
I spend generally 30 to 45 minutes of time over the first several visits providing individualized HIV education and prevention education to my new patients. I see such a wide spectrum of patients that there is no general scenario. I see highly informed and educated, Web-savvy patients who come in armed with questions, as well as patients who are completely ignorant of both HIV and, in general, their health, and with no English skills. The message patients get depends on the situation, but hope for the future is perhaps a theme.
What do you provide in terms of education or counsel for a patient who is about to begin treatment?
We provide numerous patient handouts and Web site addresses, as well as direct counseling. This is provided by me, as well as a nurse and usually a pharmacist who works in our clinic. Handouts depend on their native language and knowledge; this can cover a wide spectrum.
At what T-cell count do you start someone's treatment?
There is no clear threshold if someone's CD4 count is more than 250. We are doing the SMART study, for example [which is studying whether it's better to start treatment immediately, versus waiting until a person's CD4 count is below 250]. The patient's readiness for treatment, their social and health status, and, of course, disease and surrogate marker changes over time, all weigh in the decision of when to treat.
What treatment regimen do you prefer to give patients?
I generally use an induction/maintenance strategy starting with an intense four-drug Kaletra (LPV/r, lopinavir/ritonavir)-based regimen along with Combivir [AZT/3TC] + Viread [tenofovir]. This is a fairly resistance-proof NRTI backbone. Once a person's viral load is below 50 copies [on two consecutive tests], I switch to an individualized, simplified regimen.
If I were to follow you over the week, what would I see you do at work?
I spend three to four half-days at the county hospital in clinic, two half-days at the health department STD/HIV free clinic which I direct, and the rest of the time on numerous research (ACTG, CPCRA, investigator-initiated and industry studies) and administrative or education projects.
At the STD/HIV clinic, I see all of the newly diagnosed HIV-positive patients for several visits (Ryan White Early Intervention Program) and consult on difficult STD and immigration issues. I am directly responsible for about 400 HIV-positive patients in my clinic, as well as patients in the state prison system.
What's the key to a great healthcare provider/patient relationship?
Being a good listener with a good sense of humor, an open mind and a positive attitude.
How do you feel about patients who take a proactive role in their own treatment?
I support a high level of patient involvement in their HIV and overall health care.
Do you have many patients who are proactive?
The majority of my patients are proactive. They address not only their HIV issues, but also their mental health, CD, cardiovascular, metabolic and cancer prevention needs as well.
Do you have a favorite patient?
Many of the over 300 patients I cared for up to their time of death would rank as my favorites. Two that stand out include a hat designer who was the first to receive intravitreal ganciclovir for his CMV retinitis, as well as the many patients who drove by my house with their family or partners to see where I lived and thank me for the care they received.
The first decade was highlighted by continuously improving opportunistic infection therapies and end-of-life management challenges. The needs were so great that the time seemed to fly by. It was emotionally difficult. It is hard to imagine how I could have coped if the miracles we witnessed in 1996 never occurred -- i.e., the advent of HAART. I see so few opportunistic infections now that those skills have atrophied, while the artistry of outpatient antiretroviral management is my major challenge.
What is the most important thing you have learned from your patients?
That every person is unique.
How do you maintain a positive outlook and avoid burning out?
I exercise physically on a regular basis, love golf and rock music, spend time with my family and try to exercise my sense of humor at home and in the office.
What kind of research are you currently working on?
Numerous AIDS Clinical Trial Group studies, new drugs (such as chemokine receptor inhibitors), growth hormone releasing factor for lipodystrophy, and a great CDC [U.S. Centers for Disease Control and Prevention] natural history study, the SUN study.
If you weren't a clinician, what would you be? Why?
Perhaps a politician, so I can help improve programs that support universal healthcare and human rights.
Who would you dedicate this award to if you could?
To my patients who have died from AIDS-related causes and the many volunteers in research trials I have been involved with.
Where did you grow up?
What did you want to be when you were a kid?
As long as I can remember, I wanted to be a physician.
What kind of work did your parents do?
My dad was a physician and my mom a teacher (and later a stay-at-home mom).
What was your major in college? When did you decide on medical school?
I always wanted to be a M.D. I was pre med at the University of Illinois Urbana, graduating in three years with a double major in biology and chemistry.
What made you decide to go into HIV care?
The first report on AIDS occurred in May 1981 when I was a chief resident in St. Louis. I knew immediately that my future would focus on AIDS. I grasped immediately that a potentially fatal sexually transmitted infection would present a major challenge to both clinicians and society.
Who were the most influential people in your life, both professionally and personally?
Many of my dad's friends are physicians who I admired. My family had, and still has, a major influence on my attitudes and priorities.
What do you do in your spare time?
I read (history, current affairs and mysteries), exercise (lift weights, run, bicycle and golf), attend kids' sports and school events, and pay more attention than ever to politics.
Tell me about your partner and kids.
My wife is a physician who works at the student health service at the University of Minnesota. I have three kids -- all boys: 21, 18 and 15, two of whom attend the U. of Wisconsin-Madison.
Do you have any pets?
We have a Jack Russell Terrier named Peanuts and a cat named Sunshine.
Where do you live? What kind of community is it?
I live in White Bear Lake on a lake called Birch Lake. The fishing is good in the summer and the skating is good in the winter.
If you could live anywhere else, where would it be?
I would live in Northern Arkansas, close to many of my relatives. [The area has] great natural beauty.
What's the best vacation you ever had?
A family trip to Scotland, London and Denmark prior to the International AIDS Conference in Geneva.
What's the biggest adventure you ever had?
A tie between a great fishing trip to the Buffalo River in Arkansas with an uncle and kids, and one of my trips to India or China related to HIV activities.
What's currently on your bedside table for reading?
I am reading Flyboys: A True Story of Courage by James Bradley, 102 Minutes: The Untold Story of the Fight to Survive Inside the Twin Towers by Jim Dwyer and Kevin Flynn, The Narrows (a Harry Bosch mystery), and a golf instruction book at the moment.
What book would you say has had the most impact on you?
The most influential books I ever read were The Source by James Michener and Blue Highways by William Least Heat Moon.
What kind of music do you like to listen to?
I have been a huge rock music fan ever since the Beatles. I love listening to XM Radio with taste from rock to alternative country and blues.
What album do you listen to the most?
The Beatles' Abbey Road and Pink Floyd's Dark Side of the Moon would be the albums I have listened to the most.