Positive Care

Q. Can you describe some of the history of your program?

Andrew ZolopaZolopa: You could say our program evolved in parallel fashion to the AIDS epidemic. We opened our doors in converted inpatient rooms located down the hall from the emergency department, where we too frequently had to transfer our patients in a gurney. Other patients were frequently admitted directly to the hospital from the clinic. We started at the end of an era of high death rates and lots of complications. We had very little in the way of treatment for the underlying HIV infection. When Jose joined us in '96, we were just starting to turn the corner in terms of our therapeutic choices. We had many more drugs available and actually started seeing people improve. Hospitalizations and deaths started to decrease. We came over here to Welch Road in January '97, and a year later Michael Harbour joined our group. You could say we went from the feeling of a MASH unit to that of a university-based primary care practice here on Welch Road.

Q. Would you describe some of the therapeutic changes that have occurred?

Jose G. MontoyaMontoya: The drug combinations are changing significantly. In 1988, we had only AZT. Since 1996, we have considered it a mistake to treat with a single drug. Treatment with "cocktails" of drugs is now the rule rather than the exception. On the other hand, in 1996, if a patient's CD-4 count went from being very low to being high because of the drug treatment cocktails, we would say dogmatically that you had to keep the same prophylactic agents to prevent opportunistic infections. Now, we are learning that some of the drugs for prophylaxis can be dropped. We add and take away drugs as circumstances change and as our knowledge is finetuned. Of course genotyping is starting to play a major role, particularly when the course of treatment is not proceeding as we'd like.

Q. Can you talk a little about genotyping?

Montoya: We're very fortunate here to have the resources of a sequencing lab and a huge database that allows us to identify resistant strains in our patients. Many of us heard from the Sixth Conference on Retroviruses and Opportunistic Infections held in Chicago in early February the sobering news that HIV is developing resistance to potent drugs at an alarming rate. By using resistance testing, we are able to find quickly what drugs the patient has become resistant to, and then we can pick and choose to provide aggressive therapy - HAART [highly active antireroviral therapy]. We and other centers have found that we can sustain these potent regimens more effectively if we can pinpoint and identify the strains more accurately. We don't have to wait for therapies to begin to fail. Instead we can begin more aggressive therapy very early, often with experimental salvage agents still under investigation.

Q. Can you talk about your collaboration with Santa Clara County?

Zolopa: This is a unique arrangement. It allows us to collaborate rather than compete with the county for the same scarce dollars. Because of greater numbers, our patients will benefit by greater access to new therapies and diagnostic tools, such as resistance testing for AIDS. And our teaching mission has already started to benefit, because we can offer the full range of trainees - from interns to postodcs - the opportunity to become involved in treatment of HIV patients from a wide variety of demographics at different treatment sites. For me this is a little like coming home - I served my residency at Valley Medical Center.

Q. When you started there were several other AIDS practices in the Peninsula and South Bay. Are they still active?

Zolopa: Yes, there are several clinical practices in the area. We have lost one notable program. The Ursus Group on Welch Road, founded by clinical faculty member Dennis McShane, closed in March 1997. Dennis is still quite active with our programs, by the way.

Q. How do you deal with patients who require a lot of professional time at low reimbursement?

Zolopa: I think Jan has a lot to do with that.

Jan PorterPorter: I'm here when the patients come in and I deal with their psychosocial issues. The physicians often start the dialogue during an appointment, but after patients have seen the doctor I can sit down with them and we can talk about their many issues. Fortunately, there are a lot of community resources out there that I can help link them to.



Montoya: We are fortunate in the way that Dr. Zolopa has set up the clinic, because the 15 or 20 minutes that we spend with the patient can be totally focused on medical care. For example, if a major psychological issue comes up during a medical visit, the magic words are "could you please talk to Jan [Porter]." If there is a nutritional issue, "could you please talk to Margaret [Frausto]." Richard Caldwell is our pharmacist, and he meets with patients individually to discuss compliance and side effects. The whole team meets every week to discuss clinic and patient issues. And we have a case manager who deals with discharge planning issues. I just don't know how you can provide HIV care without a multidisciplinary team.

Zolopa: Also, we are fortunate in that we do have support from the hospital to help underwrite some of our activities.

Q. Why would the organization provide funding to your program?

Zolopa: I think there is a recognition that HIV is an important cutting-edge disease that must be represented at a university hospital. Not to have an AIDS program would represent a terrible deficit - not only from a teaching point of view, but from a medical research point of view, from a care point of view, and from a basic ethical point of view. It's the right thing to do.

Q. Are your patient demographics changing?

Porter: I think our practice Iis primarily still gay men, but we're seeing more diversity. We have increasing numbers of people infected from heterosexual contact and IV- drug use. We have more women. We are seeing increasing numbers of minority group members.

Q. Do you have pediatric patients?

Porter: That's a separate program at LPCH.

Q. How did you get into AIDS medicine?

Zolopa: For me it seemed like a very natural career choice. I came of age medically in the era of AIDS. One of my first experiences as a medical student at UCLA was taking care of one of the first four patients presented in the original New England Journal study in the early 1980s.

Montoya: While I was attending medical school in Colombia, I actually found one of the first HIV patients in my country - my English teacher who developed a diffuse skin rash. Before that, AIDS was only something written about. The major impact came during my residency when I saw so many young, talented people being taken away by this disease. I saw architects losing their vision to CMV; I saw writers losing their brains to dementia. It was quite appalling. Simply, I decided to do something for them.

Q. What is the status of the disease today?

Zolopa: We haven't lost sight of the fact that AIDS remains a very complicated disease. Many of our patients are, in essence, being given a chance to have a second life. It's a Lazarus effect. It's wonderful, but it also comes with a tremendous set of stresses and strains. For example, if there is any little change in our office, it can be very disturbing to the patients. If one of our front office folks is out on vacation, a patient might ask, "Where has she gone?" Unfortunately, there is still that lingering feeling of "When is the bottom going to fall out?"

Q. Could the bottom drop out?

Zolopa: We hope not. What we do know is that probably around half of the patients who start on these cocktails will do very, very well for at least three or four years. The drugs have not been around long enough for us to be able to tell whether we're going to have a durable treatment response for decades as we have, for example, for high blood pressure or diabetes. We don't lose sight of the fact that half of our patients are having trouble - with drug resistance or drug effectiveness. In the worst case scenario, they are starting to develop the complications that we saw four or five years ago, and deaths continue. It's complicated, but we have made tremendous progress.

Q. In the 50 percent who don't make it, how important is compliance?

Zolopa: Even with the little data we have, there is no question that adherence to a prescribed drug regimen is one of the major barriers to complete control of this disease over the long term.

Q. Can you effectively screen who should receive these drugs?

Zolopa: The scientific information that we do have is that providers are terrible judges of who is going to comply and who isn't. We should take away our own prejudices from the encounter with patients and sit down and approach this objectively. We must assess where the patient is in the disease course, assess with them what options are available and allow them to have dialogue. It's not about us saying, "Here are your prescriptions, go take them." It's really about developing a partnership with the patient - bringing them onto the team. I think that will help patients adhere to the complicated regimen.

Q. Do you have any advice for practicing physicians about how to assess which of their patients might be most adherent?

Zolopa: Well the factors that have been identified are the following: First, demographics do NOT predict adherence; socioeconomic status, race, educational level, don't predict who is going to comply. What does predict noncompliance are active substance- abuse problems, active major mental health issues, or side effects to the medications. I'm fond of saying, "We don't need better patients; we need better drugs." That would help a lot. Meanwhile, since we don't have a lot of better drugs on the horizon, we should be smart about whom we give these medications to, because if we don't, we often face multidrug resistance problems. That's something which both Dr. Montoya and I have been focused on. How do you deal with the patient who has a multidrug resistant virus?

Montoya: There are 13 drugs approved by the FDA to treat HIV. There are as many as seven or eight cocktails. Each of these cocktails has many side effects that are different, and they have many interactions with other drugs that the patient may be getting. Follow-up testing is complicated and includes genotyping to determine if the virus is mutating under the pressures of the drugs.

Q. Should primary care physicians try to manage their HIV-positive patients themselves or refer them to you for all or some of their care?

Zolopa: It's not essential that we take over the primary care of all our patients. The model is similar to primary care physicians who refer their patients to a specialist for cancer treatment. Nevertheless, we see our patients so frequently that it's relatively seamless to take on their primary care. I think you do have to take a special interest in HIV.

Montoya: Every HIV patient should have either a primary HIV provider or, if not, should have his or her primary physician work in partnership with an HIV provider. In fact, there are studies that have shown that the outcome, the morbidity and mortality of HIV patients, is better if they have a provider who specializes in HIV care using a multidisciplinary approach.

Porter: Most of our patients do receive their primary care here. Almost all of our HMO patients choose one of the doctors here as their primary care physician. It is only a small number of patients, usually those on fee-for-service or government health plans, who split their care between our clinic and a primary care doctor.

Q. What screening should primary care physicians be doing as a normal part of their practices?

Montoya: It's very important to identify risk factors. Obviously, it's easy to identify patients who say they are gay. But what people should be doing is opening channels of communication with patients who appear not to be in high-risk groups. Physicians can be direct. They can ask if the patient is at risk, "Have you practiced unsafe sex since your last visit? Have you been involved in an unsafe sexual practice?" I would ask my colleagues to open up the possibility that any of their potentially sexually active patients might be at risk of HIV. If in doubt, do the test.

Porter: I think a primary care doctor simply needs to ask their patients questions about their sexual behavior. And we need outreach and education to every at-risk population. Public health agencies may need to take the lead. But it needs to be done everywhere.

Q. Has the encouraging results from improved drugs resulted in greater risk taking by sexually active patients?

Zolopa: In general, I think most people we encounter are acting extremely responsibly. But there is one area of confusion. If someone is getting a very good response from the medications, and we cannot detect any virus in their bloodstream, some people mistakenly believe that they may not be infectious to sexual partners. While it's probably true that they are less infectious because the virus decreases not only in the plasma but in seminal fluid as well, it doesn't go away completely. The standard recommendation still is that people should practice safe sex, even with regular, monogamous partners. There are also reports that young gay men may be foregoing safe sex practices. These are men who didn't come of age until after the dark days of the epidemic and missed the proliferation of safe sex messages.

Q. What special issues does cultural diversity bring up?

Montoya: In the Hispanic culture a man may have sex with another man and not see himself as gay or even bisexual if he is playing the active role in the encounter. That's a major way in which women become infected. Physicians need to be aware of that. We have about seven women who were infected by partners who never communicated to them that they were HIV positive. Many women with infected male partners aren't diagnosed until they present with an opportunistic infection, very often PCP pneumonia. The diagnosis is delayed because PCP pneumonia is associated with immunocompromised patients, and unless HIV is suspected, doctors wouldn't go looking for it in a pneumonia patient. When these patients are told they have HIV, they react as if they are in the '80s and take it as a death sentence - until we show them they have a manageable, chronic disease.

Porter: I think there is a lot of shame and stigma in many minority groups about being HIV positive. We have a fair number of patients who have not told anyone of their diagnosis. You can't assume that you can talk openly in a hospital room, for example. You have to ask.

Q. How knowledgeable are your patients?

Montoya: Our patients demand the very best of us. Many patients come to their appointments armed with Internet searches. "There was a meeting in Chicago last week," they'll point out. If they weren't there in person, they know what was presented. You have to be ready when they ask about "Abstract number 135, this section Š . Does this apply to me?"

Zolopa: Gay men, particularly, typically come here from very active peer support groups and are armed with a great deal of knowledge. Many will even specify which drugs they want in their cocktails.

Q. Is the knowledge to treat HIV applicable to other clinical specialties?

Zolopa: The spin-offs are great. Most notably we have developed antiviral treatments. An earlier generation of physicians were taught that viral diseases aren't treatable. Now we're seeing that not only are we able to treat HIV, but we're finding that some of the drugs we use for HIV also have activity against some of the hepatitis viruses. That's a direct connection, but I think we'll see many indirect connections as well.

Q. Do you benefit from your association with Stanford's AIDS Clinical Trials Group?

Zolopa: Definitely. There is terrific synergy. Our relationship facilitates the latest cutting-edge therapies and diagnostics for our patients. And the trials group receives access to patients. In the Bay Area, only UCSF offers comparable access to research protocols.

Porter: By the way, we are not in competition to get patients from San Francisco. We provide services to the Peninsula, South Bay and the San Joaquin Valley. We offer an outstanding HIV center in the setting of a local clinic. The best of two worlds.

Q. Do physicians see the same doctor at each visit?

Montoya: Yes, patients make appointments with the same attending each time. We respect that, and there is a one-to-one relationship. One of us is always on call, so if patients need us at night or on weekends, they page one of us. Right now we do have an experienced postdoctoral fellow, Nancy Shulman, who shares call with us.

Q. Don't you have a housestaff and fellows program?

Montoya: Yes, we have residents who work with our hospitalized patients. Residents and fellows rotate through the clinic, but we are present during any patient interactions.

Q. Can you tell us about some patients you've helped?

Zolopa: There are so many stories. One of our patients, Jack, was dying in the intensive care unit. At one point in his hospitalization, he wrote on a napkin, "I don't want to live any longer." He got through that episode and eventually went home. Soon afterward, he started on one of our cocktails. That was about three years ago. His immune system has recovered greatly. He's tolerated the medications. He's vigorous. He surfs nearly every day. He goes around and lectures to high school students about HIV. He has a whole new life. When he realized the drugs were working, he said, "You know, Doc, I feel like I've just graduated from high school and have my whole life to live over again." I thought that really captured not only the great excitement about what we've seen in the last few years but also the great anxiety patients have as they kind of re-emerge, Lazarus-like, from that dark period. And there are many, many, many other stories.


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