August 10, 2010
Steven M. Natterstad, M.D.
When "Dr. Steve" isn't responding to questions from our Spanish-speaking readers on TheBody.com's Tratamientos forum, he runs the Frascino Medical Group, which provides comprehensive care for people living with HIV/AIDS. With his partner of nearly 17 years, Dr. Bob Frascino, he cofounded the Robert James Frascino AIDS Foundation -- a philanthropic nonprofit organization dedicated to raising awareness and funds for HIV/AIDS services. Drs. Steve and Bob live with their dog, Presto Frascino-Natterstad, in northern California.
Welcome once again to TheBody.com, Dr. Steve!
Thank you. Good to be here.
Tell us a little bit about yourself. We can just start from the beginning. Can you talk a little bit about the community where you grew up?
Sure. I was born in Sioux Falls, South Dakota. I guess you could call it the "flyover zone" of the U.S. Shortly after my birth, my family actually relocated to Fresno, California, in the Central Valley. I guess as you might think of Sioux Falls, South Dakota as a flyover zone, a lot of us Californians might think of Fresno as that "drive-through zone" of California. They're actually quite similar culturally, those two places, even though they're a couple thousand miles apart.
Essentially I grew up a straight child in a very straight, conservative, religious family. My father was a minister, my mother an elementary school teacher -- in addition to her role as first lady of the church, of course. So I've been in California ever since I was three months old, first in central California, and then fortunately we relocated to southern California, the Los Angeles area, when I was in junior high school. I expanded my horizons a bit in that region, in junior high school and high school.
Then, believe it or not, I went from the thriving metropolis of L.A. to Fargo, North Dakota, for college, to go to Concordia College, which is a family school on both sides of my family. Both my parents went there and met there, so there was a long tradition of going to that school. So I ended up going back to the Midwest for four years before I escaped once again to the West Coast and ended up at UCLA [University of California, Los Angeles] med school and continued on at UCLA to do my internal medicine residency and fellowship. And then I came to the Bay Area.
What year did you come to the Bay Area?
In the early '90s, actually. In 1991 I moved up the Bay Area and took a job at a large multi-specialty group on the Peninsula and actually met Dr. Bob before I had even taken the job. Kind of an interesting story. I was getting ready to accept the position. I was sitting outside a boardroom waiting to be offered the job, and Bob was waiting to meet with the board as well. (I'm going to call him "Bob" rather than Dr. Bob -- he only asks that I call him Dr. Bob under very unusual circumstances, so I'll just call him Bob for now) So I actually met Bob before I even moved up to the Bay Area.
I knew him for a couple of years, even after I started working at the group. We became good friends but didn't actually become involved with each other until 1993, largely due to my being unsure of who I was. I was closeted to everyone at that time, including myself. I was quite clueless and searching. As I searched and figured some things out then, suddenly, Bob took on a new aura; and the rest is history, as you might say.
I should back up a bit: The reason we got to know each other is that I had interest in HIV medicine even back then. As I said, I went to medical school in UCLA and did my training there, and of course, L.A. was one of the Ground Zeros of the epidemic in the '80s. When I joined the group up here in the Bay Area, Bob was already doing the lion's share of the HIV work at this clinic. But he was primarily interested in doing more of the outpatient work, so he welcomed an internist like me, who was more interested in doing some of the inpatient work, of which there was a fair amount back in the early '90s, of course. So we started working together, basically both working in HIV medicine, and got to know each other as colleagues quite well.
But I do remember having a conversation with him and discussing some of our interests, which include classical piano -- we're both classical pianists -- and just having a great conversation. I remember thinking to myself, "If only Bob was a woman, he would just be the perfect life partner for me," because that's where I was back then in those days. So things have changed considerably.
Can you talk a little bit about how you went from being colleagues and friends, with you wishing Bob were a woman so you two could date each other, to actually being involved in a relationship?
Well, as I mentioned, I was at that point in my life where I was starting to question things. I had gotten through medical training and basically had my first real job. I had bought a house up here in the Bay Area. I think I was starting to reflect on my life seriously, trying to figure out what was missing. Everything else seemed to be going along quite well professionally, but personally there was definitely a void.
I had experiences over the years having to do with figuring out my sexuality, but those had been earlier in life. I spent my 20s trying to convince myself and everyone else that I was straight. I think by that point in my life, my early 30s, I finally started entertaining seriously that that might not be the case.
They say timing is everything. I think at that point in my life, I was becoming more open to other possibilities for who I was as a sexual being, and Bob was there. As many of your readers know, he's pretty much Mr. Wonderful in many ways. So it didn't take much convincing for that to all happen. It all progressed pretty quickly.
At what point in your relationship did you find out that Bob was HIV positive? Did you know already since you had been working together or did that come out when you became involved in a relationship?
Drs. Steve and Bob.
If we take ourselves back to that time during the epidemic, diagnosis of HIV disease, or disclosure of someone else's HIV disease -- although definitely not easy in this era -- was very different back then. You really did jump to that horrific conclusion that certainly folks like Bob and me, who were in the field of HIV medicine, had seen so many times. But even a lot of those in our community knew very well what the outcome of a diagnosis like that often was.
Here I was, having just made great progress in figuring out who I was and just found the love of my life, and I was suddenly looking at that potentially being a truncated relationship. So I think if I had to sum it up in a word, it would be devastation.
Did that feeling change around 1996 when effective treatment for HIV became available? What was the progression from being devastated to recognizing that your partner would likely live for some time?
It's been such a long-term relationship that it's hard to break it up into small chapters. You mentioned 1996 and that was certainly a big change, with the introduction of HAART [highly active antiretroviral therapy]. Of course, we were dealing with HIV a few years before that and there were treatments, but they weren't perfect by any stretch.
During those years, the treatment that Bob was taking wasn't as difficult in terms of side effects. It certainly wasn't as potent. It wasn't keeping things under control as much as we would have liked -- although we didn't know that, because we didn't have some of the same diagnostics or monitoring tests that we do now. But I think for those first few years, it was a bit more touch and go, not knowing when the other shoe might fall. We lived life a bit differently during those first few years, those pre-1996 years, because realistically we were looking at a shorter timeframe for our life together.
Then in 1996 and beyond, when things started looking up in terms of getting that viral load down and perhaps seeing that CD4 count rise, there were side effects. They were pretty miserable back then. We were dealing with d4T [Zerit, stavudine], the neuropathy that so many had from that medication, which was commonly used. The protease inhibitor that a lot of people were using back in the earlier days of HAART was Crixivan [indinavir], which was a real challenge to take. It had to be taken every eight hours on an empty stomach. In other words, you had to take a dose two hours after a meal or an hour before a meal, so there were nine hours when you couldn't eat anything. You had to remember to take it every eight hours. And then there were plenty of side effects in addition to that.
It's hard. I know you're asking about this whole trajectory of how life has changed over the last 17 years. Some things haven't changed. I think there's always awareness that there's this elephant in the room. It's always going to be there, no matter how great things are going in terms of controlling HIV. We read new reports every day about non-AIDS-defining malignancies that folks with HIV are developing.
It seems like there's always something that's out there to remind you that there are no guarantees. But certainly, after this many years, it becomes part of your relationship. There are times when you perhaps aren't aware of it as much as you should be, and something will suddenly remind you that it's still there and shake you back into reality.
Can you give an example of a moment like that, when you're shaken back into the reality of this unique situation that you're in?
There are certain side effects that Bob's dealt with, and some mysterious complications. He's dealt with some joint issues. He has a strange type of knee inflammation of which we've only been able to find six other cases that have been reported. None of the orthopedists here really know exactly what that is, so even though it doesn't seem to be progressing to anything life threatening, it's still there. You always wonder what, in fact, these medications are doing in the long term. We don't know.
I think every three months when he has his blood drawn and we're waiting for his results to come back, that's always a reminder that he's cohabitating with this virus.
Have you and Bob had any concerns as far as sex and intimacy in your relationship?
We've never felt impaired in that area. I think Bob and I have a great intimate relationship. I wouldn't trade it for the world. But we certainly have dealt with some of the concerns that I'm sure are pretty typical for a magnetic couple, in terms of keeping things safe.
What I've been reminded of over the years is that this is a negotiated risk. It's not something that only I can decide as the negative partner, or Bob can decide as the positive partner, in terms of how we're going to conduct our more intimate life. I think perhaps some negative partners may feel, "If I'm comfortable pushing things a bit or taking more of a risk, then that should be just fine." But as Bob has reminded me, and I'm sure other positive partners have reminded their negative partners, that isn't the way it works. The positive partner is obviously very concerned about infecting the negative partner. That positive partner may turn out to be more cautious for a variety of reasons that the negative partner has to respect.
I think that's an ongoing conversation that members of a magnetic couple have. And the reason it's ongoing is because things change. We've had new data come out. We had the Swiss study come about in the last couple of years, which concluded that if you're part of a magnetic couple and your positive partner has an undetectable viral load and no other sexually transmitted diseases, and has been on treatment for at least six months, that there's really no risk of sexually transmitting HIV.
I'm sure that came up at the dinner table of many a magnetic couple during those initial days, and I'm sure it still does come up. Certainly that hasn't become a mainstream recommendation by any stretch, but it was pretty out there to have a reputable group come to that conclusion. That's something that I think we'll all keep dealing with until there's a cure. I think we're still heading for at least a couple more decades of this.
I'm glad you brought up the Swiss study, and I'm curious to hear why you think it hasn't become a mainstream recommendation. It seems that often people who are working in HIV prevention and care have quite strong feelings about the Swiss study, whether from the perspective of wanting the Swiss study's findings to translate into universal recommendations so that magnetic couples can feel more comfortable relaxing some of their prevention precautions; or believing that the Swiss study's findings might foment recklessness and not even wanting to discuss the study at all. What do you make of this debate?
There are still some open questions about how accurate the viral load in the blood is, what's going on in other body compartments and in other body fluids. So I think that's one reason that people haven't bought into it completely. Also, there are some reports where HIV transmission has occurred even in the face of an undetectable viral load. So I do think there is still reason for caution there.
I think there's also reason for some reassurance and some encouragement in terms of sexual transmission, perhaps more in the area of less risky behavior -- let's say oral sex, for example. The majority of us agree that the HIV transmission risk from oral sex is significantly less than with vaginal or anal intercourse. There are those of us that would be incredibly content if we could just get our patients to use condoms when they have anal or vaginal intercourse. Even if they don't use them during oral sex, I think we would be happy if we could just get them to commit to the former.
I think a study like that can be encouraging when it comes to oral sex. There's still plenty of panic out there about transmission via oral sex, as I'm sure all the readers of TheBody.com are aware. So I think a study like this can be reassuring that risk is quite low and that without extenuating circumstances, oral sex can be considered safe -- or safer, I should say. It's all relative.
Going back to the beginning of your relationship: How did you and Bob first begin the conversation about safer sex? Was it a ubiquitous conversation in the community and you didn't even need to talk about condoms or what sorts of prevention methods you were going to use; or was there a particular conversation that you had before you became sexually intimate?
I think for us we were in a bit of a unique situation, since we're both in the medical field. We were both aware of what safer sex entailed, and that was always part of our relationship. So when the disclosure of Bob's status happened, it didn't change how we were already conducting our relationship.
Obviously, we had discussions. We all believe that we need to approach all partners as if they're positive and use safer-sex measures accordingly, but having the knowledge someone is definitely positive is going to change things, or at least bring up discussions. But because of our knowledge of HIV medicine, we really didn't have to stretch too much on that issue. It was kind of set in motion and didn't change a whole lot.
Getting back to something like the Swiss study: I think we like to dream about and discuss hypothetically when we'll be able to have a bit more of a carefree relationship in this regard. But I think we're holding the line there and basically staying tuned. We haven't altered our behavior based on any recent studies.
Regarding imagining a more "carefree" future as far as safer sex and HIV risk: After many, many years of having to think about being safe, have you ever experienced any kind of "safer-sex fatigue"? Do you ever sort of get tired of having to be concerned about safer sex?
I definitely have to admit that there has been some fatigue. I wouldn't say it's been overly taxing on the relationship. It really does take the form of dreaming or fantasizing -- as I think a lot of folks do about having to worry about safe sex in general.
There just seems to be something not right about having to be so prepared for sex. It seems like it should be something where you just throw caution to the wind -- this wild manifestation of who we are as human beings. It seems a little odd we have to be so careful. Still, having been in a relationship for so many years, and having our sexual relationship defined as it is, it would be odd, in some ways, to have it change so dramatically.
I certainly see it in my patient population, this fatigue. I think that can be borne out in some careless behavior, especially in the younger age group that perhaps hasn't seen the devastation of HIV/AIDS over several decades.
Interestingly, you could look at a relationship like Bob's and mine and think, "You guys are going to be together until the very end. Maybe there is a place to throw caution to the wind." It's a little different than being careless on a one-night stand, you might say. But I guess it just comes back to that negotiated risk, and what each of us is comfortable with.
We've basically decided between ourselves that we're going to continue to be safe until we have more data. Now that's two doctors speaking, isn't it? Always waiting for data. [Laughs.]
[Laughs.] It does make perfect sense considering you're both doctors, and that's how you came to be together, so it's a good way to close on that point.
In the earlier days of your relationship, when Bob may have been dealing with side effects or even illness: In being a supportive partner to Bob, how did you find support for yourself? Did you feel that your relationship was consumed more with caring for your partner as opposed to there being more of a balance?
I have to say that I've never been a support-group type of a person. I don't think there are as many opportunities as there should be for HIV-negative folks in terms of support groups, but that being said, it's never been something I felt that I needed. To be honest, I would say I got most of my support from Bob, and he probably would say the same thing in reverse. He's also not the kind that has belonged to support groups over the years.
I've certainly gotten support through other friendships that I have. But to honest, most of those friends don't have as much knowledge about HIV disease as I do. I guess the short answer would be that outside support hasn't been something that I've felt a strong need for in our particular situation.
I hate to keep harking back to how wonderful and perfect our relationship is, but perhaps it is because of the healthiness of our relationship that I haven't felt the need for it. And if there have been issues, I have felt comfortable dealing with those with Bob.
Is there anything that you know now that you wish you had known at the beginning of your relationship that might have made any aspect of it proceed more smoothly, or just differently, than it has?
Taking our relationship as a whole, although I just said it was wonderful and fabulous, which it is, no relationship is perfect. We have certainly had our bumps along the way, although I would characterize them as minor. They really have dealt more with traditional issues of relationships than with HIV-related issues.
For instance, I was younger, not only chronologically but also in terms of life experiences, when Bob and I got together. I'm almost nine years younger than Bob, and as I mentioned earlier, I was in my early 30s when I came out of the closet. I was a "late bloomer" to some -- although certainly there are those who are later to the game than I have been.
I probably don't need to go into too much more detail about those bumps because they weren't HIV-related. As far as knowing something that would have helped make any of that smoother, I can't think of anything --maybe because it was fairly smooth.
As you've probably noticed, the kind of happy, fulfilling, wonderful long-term partnership that you and Bob have is rare in any community. Would you share some things you think have contributed to keeping your relationship strong over the years?
This is cliché, but I think what I've seen in our relationship, and what I've seen in other successful relationships, is that it all boils down to honesty and respect. I think if you can keep those two components in your relationship, the relationship is pretty much guaranteed to go far.
We've always been incredibly honest with each other, from the early disclosure throughout the nearly 17 years that we've been together. I notice in my medical practice that, when I see relationships falling apart, frequently there are honesty issues. Also, I think you have to respect each other to keep the relationship healthy. Once you've lost that, then it's hard for the relationship to survive.
And you just have to love being with each other. Bob and I are very different in many ways, particularly in terms of personality. Bob is very much "out there," very outgoing, loves being in the public eye. It doesn't bother him to have attention flowing his way. I tend to be one who likes to sort of stay in the back orchestra more than in those front orchestra seats. So we're different in terms of that. He really lives in the moment, which I love about him. I think that's characteristic of his personality type, which I admire and certainly try to learn from.
But we're also similar in terms of our interests in life. We just love to do a lot of the same kinds of things. When we talk to other people about what we're interested in, a lot of people are amazed that we found each other because they see us as so similar in terms of interests. We both play the piano. We are both doctors. We like similar cultural events, music, movies, and love to read and love to travel. I think that's essential.
As often as we say that opposites attract -- and I do think that Bob and I are "opposites" that have attracted in many ways, personality-wise as well as Bob's being positive and my being negative -- you've still got to love being together. In any addition to being my lawfully wedded husband -- which he is now, since we managed to squeak in under the wire here in California a couple years ago -- he's my best buddy as well. Can't spend enough time with him.
Bob is famous on TheBody.com for giving no-nonsense tips to folks in magnetic partnerships in his Safe Sex and HIV Prevention forum. What's your advice for HIV-negative folks, particularly for gay men, as they enter and build relationships with HIV-positive partners?
The first piece of advice I would give to any prospective member of a romance would be: Don't limit yourself. Don't think you know what you're looking for. I certainly never would have guessed I would have ended up with Bob as my life partner. And that doesn't only have to do with his gender. Certainly, years ago when I was trying my darnedest to be a straight guy, I would have thought I would have eventually ended up with a woman. But beyond that, he is completely different from the person I thought I would have been looking for 20 years ago. I think you need to keep yourself from pigeonholing your prospects. I give that advice frequently to people that are having trouble finding love.
As a corollary to that, certainly don't limit yourself to those that share the same serostatus. For those of us who are negative, there's a pretty incredible world of people out there that are positive. I know this not just from living with Bob, but from my medical practice, which predominantly consists of HIV-positive people. These folks have had a life experience that I think has taught them a lot about the value of life. You don't always find that when you're meeting new people and trying to form relationships.
The best thing I would say is, if you do hook up with someone who's positive, try to take part in that positive partner's positivity. I don't see this as often as I would like. I'd like to see more negative partners come to the doctor's appointments and learn more about HIV. It's a huge part of the life of someone who's positive. That can really strengthen a relationship if the negative partner takes an interest, and even tries to lighten the burden of the HIV-positive partner.
One thing that I've done for Bob from the get-go is to do his medicines. It's a small thing, but considering he has to throw down fistfuls of antivirals twice a day now, it's perhaps a little less horrific if he doesn't have to sort them out and put them in the piles. He can just go to his pillbox and grab a glass of water and throw them down without thinking about it. There are ways that we as the negative components can help out.
Let's not forget that HIV is not the bubonic plague. It is an infectious disease, but it's preventable even in the context of intimate relationships. Both Bob and I have attested many times on TheBody.com that it has not kept us from having an incredibly satisfying intimate relationship.
So those are my pearls that come to mind. Love is hard to find -- don't limit your prospects. I'm certainly glad that I found a life partner that I definitely wasn't looking for.
Thank you so much for speaking with me today.
Absolutely. It's a pleasure.
The pleasure's been all mine.
This transcript has been lightly edited for clarity.