Interview with Jay Lubbers (1954-2000)

Hedrick Smith: Do you remember the moment and the circumstances when you learned you were HIV positive?

Jay Lubbers: I had an episode of shingles that was extremely painful. That was in the 80’s and people were just learning about HIV. I went to a Boston hospital. I had the foresight to bring friends. I think I knew what the result was going to be. I was HIV positive. I remember at the time it was something like falling off a cliff and you don’t know when you’re going to hit bottom…so I’m still in my freefall and I’m glad to be there but at some point I’ll hit the bottom.

Hedrick Smith: Did your life change immediately after that or did it evolve?

Jay Lubbers: I think there’s probably a well-documented set of feelings you go through. I needed to fully engage in those activities.

You know, I’ve been dealing with this for a lot of years. I was diagnosed in 1987. I’ve had many, many friends who passed way from AIDS, so I’m grateful for every day. It’s a big change. You know, I’m not the energetic, lively person that I once was, and I have to adjust to that. In some ways I see it as...kind of premature aging. I’m slowing down. I’m doing less. I’m not engaged in my profession anymore. My life is here. It’s at home. And it’s at Kaiser. Going to the doctor is a big part of my week.

Hedrick Smith: How often do doctors in other places ask patients for their recommendations?

Jay Lubbers: Well, almost never. What I believe very, very firmly is that HIV has changed the paradigm of medical care. Partly because of the advocacy of HIV activists - AIDS activists. AIDS patients are far more involved in their health care than patients ever were in the past. They’re extremely knowledgeable.

They’re now serving on boards and advisory panels for all the drug companies, and for all the diagnostic companies. It’s just changed the way people look at medicine. And because things change so quickly in the field of HIV, patients have had to be the ones to educate their doctors in many instances. So, for an HIV doctor to say to a patient, "Well, what do you think? What do you know about this?" It’s not so unusual.

Hedrick Smith: To me it was unusual to hear a doctor say, "What would you recommend?"

Jay Lubbers: Certainly all the physicians that I’ve dealt with have been very open to hearing my experience and my knowledge.

Hedrick Smith: So, Kaiser’s not different in that regard or Steve Follansbee is not.

Jay Lubbers: Well, Steve Follansbee is different in that regard. He listens more and he trusts me when he asks what my internal experience is, and he believes that I have good understanding of what’s going on in my body. So he’s made a judgement about me. I think he thinks that I’m able to make some assessments on my own. Then he utilizes that in coming to his own conclusions.

Hedrick Smith: How important is your doctor? How important is Kaiser to your carrying on the struggle? To your daily life?

Jay Lubbers: Well, for me personally, having a primary care physician of the quality of Steve Follansbee is essential. That’s why I’m at Kaiser. If Steve Follansbee were not at Kaiser, I wouldn’t be at Kaiser. For whatever advantages or disadvantages Kaiser has, their main big advantage is they have Steve Follansbee.

I found this through difficult experience in the past. I’ve had some physicians who didn’t pay close attention, who didn’t take good care of me, and who weren’t up on the latest research, who didn’t know what alternative therapies were available and I felt like I lost ground during those times. So--by experience--I’ve learned that a primary care physician is probably the most important aspect of my health care, one whose well qualified and who I trust.

Hedrick Smith: And what is it about Steve Follansbee that’s so important?

Jay Lubbers: Well, he’s very, very smart. You know, he kind of knows everything, and actually research has shown that having a physician who is experienced in treating HIV gives a distinct advantage to the patient. They’ve now demonstrated that. So, it’s that Steven’s been involved with HIV from the very beginning of the epidemic. So it’s that he’s seen a lot of HIV patients over the years, and he knows all of the ins and outs of treating HIV patients.

Beyond that, he’s a very real, personable individual who I can relate to. I mean, he’s about my age. He has sort of similar life interests and is just someone that I can really trust and, and have as the most important medical person in my life.

Jay Lubbers: Well, life is becoming more of a struggle, particularly in the last few months. You know, up until then, you couldn’t have known a more energetic, hard-working person. Since then, since my health has begun to really assert itself as an issue in my life, my world has gotten a lot smaller. I pretty much stick around the house. I’m very domestic. And I go to Kaiser. When I do other things, something like a big night out for dinner, I have to plan in advance for that now. So I have to make sure I’m well rested. I make sure that everything is in order. I have to adjust my pill schedule and my sleep schedule and my food schedule. And then, afterwards, I’m tired. I come home and go to bed.

My morning schedule is kind of time consuming so that I really am not up and rolling and ready to do anything until 10:00 or 11:00 in the morning because I get up. I shower. I clean up and then I have breakfast and a routine of medications. So they have to be taken about three different times.

Hedrick Smith: So why don't you show me what it looks like?

Jay Lubbers: You want to see the medications? OK. Here. Let’s just start here. I don’t even have room for all of this stuff, so I have to stash it over here.

Hedrick Smith: So - and you’re taking all of this stuff? Every day?

Jay Lubbers: This is my current medication regimen. You know, some of it’s a duplicate. It just takes up an enormous amount of space, both emotionally and physically. Because a big part of my life is centered around a medicine schedule, making sure that I eat properly and take the medicines at the right time, do the right things.

Hedrick Smith: You talking about this kind of regimen. What do you think that kind of regimen costs a year?

Jay Lubbers: I haven’t really costed it out. I would say it’s easily $20,000 per year. I know some people spend more. Is it worth it? Yes. Every day, every hour I’ve gained because of that has meaning and is important to me. It’s not just HIV, breast cancer, …[it’s] all very expensive. We don’t question whether or not you should proceed with that patient. And it’s the same with HIV.

I actually made career choices based on what I knew to be my upcoming needs. As a healthy 20-year old [health care] was not one of the primary considerations…but I knew the time would come when I would need [it] and I made choices to ensure that I’m in the position I’m in now. I have the disability program that allows me to be at home when I need to.

I moved out to California to accept the position at Chiron that I had, and it was the opportunity of a lifetime. It was kind of the culmination of my career, combining all of my skills, all of my experience, in putting something fresh and new together, and building something from the ground up. And I was like a maniac. I mean, I was working um, 60, 70, 80 hours a week. But, we were doing something that we thought was very important. And I was utilizing all of my skills to their fullest extent. I was stimulated beyond belief and I loved every minute.

So, it was a wonderful time. Really extending myself and reaching and working with a wonderful group of people. I would say those are the best work years. It took a long time to adjust and think and understand what I’m dealing with. I have the experience of having friends that have gone through this before me, so that makes a big difference.

You know I often think about the current issues among young gay men and there’s a certain kind of denial or fatalism among young people I want to slap and say, wake up; you need to make choices and plan. Your life can be so different -- can be devastating to not have systems in place when some sort of crisis occurs health-wise. You don’t want to admit that you could have a life-threatening illness at any time.

You know, as I said, I’m grateful for every day, every hour.