Play PodcastPlay Download PodcastDownload

Transcription:

Cheryl Martin (Host): December 1st's World AIDS Day. Since 1988, this International day has dedicated to raising awareness of the AIDS pandemic caused by the spread of HIV infection, and also mourning those who have died of the disease. I'm Cheryl Martin. And in this episode of Living Well with Eisenhower Health, we spotlight three perspectives from the healthcare field, from a physician, a nurse and someone living with HIV.

Joining me is Dr. Alex del Rosario, who practices internal medicine at the Eisenhower Primary Care Office in North Palm Springs; Ben Farber, Vice President of Patient Care Services and Chief Nursing Officer at Eisenhower Health; and Brett Klein, Marketing Specialist with Eisenhower Health, Brett has lived with HIV for 30 years. Thanks to all of you for being on today.

First of all, Dr. del Rosario, let me begin with you. In addition to practicing internal medicine, you are also the Medical Director of the HIV Department at Eisenhower Health. So, what does World AIDS Day mean to you?

Dr Alex del Rosario: It means mostly trying to take perspective of the arc of where we come from the start of the inception of the pandemic. I started my medical practice, my residency program just through during the HIV pandemic in 1994. And at that time, when I would give a patient the diagnosis of PCP, they still wanted to jump out the window, because it was a death sentence back then. Then, we saw the development of the antiretroviral therapy, somehow whispering out. And now, we have the age of PrEP, which we can help prevent HIV transmission, and it's been a huge arc of history. So, that's what I think about with World AIDS Day.

Cheryl Martin (Host): And you talked about when you started, how were you involved in the early days of the epidemic?

Dr Alex del Rosario: Well, as a resident in San Francisco, I was at California Pacific Medical Center, but that was one of the epicenters of HIV. And we would see about 20% of my practice back then was HIV positive patients. And again, when you would give the diagnosis of PCP, people thought that was a death sentence back then. But just in the short time over the three years of my residency, the cocktail came out in 1995, '96. And by then, things were starting to change. In one year, we saw the hospital patients empty out of the hospital, and I started seeing patients in the outpatient clinic then because they were doing better. It was all during that time that I actually seroconverted, I became positive during my residency program. So, it's been now 27 years, looking back on it. And I became positive right when the cocktail came out, so there was some hope at that point. So again, it's a different arc of history compared to the people who became positive when we didn't have any therapy and they unfortunately didn't make it to now.

Cheryl Martin (Host): Ben, what does World AIDS Day mean to you?

Ben Farber: Thank you. For me, it's a day that we can remember the people that we've lost, honor the work of so many activists, patients and providers, and look at where we were, where we are, and where we're going next. It's a day to really reflect, for me personally, on how we've done over the past year, in making movement forward to ensure that we continue working toward a place that there's no stigma and that we can help people to be their best possible selves.

Cheryl Martin (Host): Now, Ben, how did your involvement with an AIDS service organization influence your care for HIV patients?

Ben Farber: I really appreciate that question and I would say that they're interrelated and may even be more my care for patients influence my desire to be involved with AIDS service organizations. So, what I started seeing was one of the advantages to being a nurse was in my early days of nursing people who really hadn't had a lot of education and didn't fully understand where the risk factors were and how to fully involve themselves in their own treatment and also didn't have the resources for those things. So, I started getting involved in organizations that could help provide those resources and those educational opportunities for people.

Cheryl Martin (Host): What were some of the challenges, Ben?

Ben Farber: I would say the biggest challenges were really that people didn't have the resources or the knowledge of where to go for the resources, not just for education, but also if they had medication needs, if they had testing needs, if they needed some sort of help outside of medication and testing, for example, housing insecurity. Those things all play into people's risk factors and their ability to be compliant with their medication regimens after they're diagnosed.

Cheryl Martin (Host): Brett, as someone living with HIV for 30 years, what does World AIDS Day mean to you?

Brett Klein: World AIDS Day for me globally is a day that we can pay respect, as others have said, pay respect and value all those we have lost to this disease, many friends of mine as well. And to support those living and aging with HIV. It gives us a collective voice to keep the message visible, create awareness, education, and honestly a hope in a time of much unrest as we're seeing in today's political structure.

Cheryl Martin (Host): Okay. Dr. del Rosario, you've been a part of working with this unique population and also knowing firsthand about the AIDS epidemic, how has it changed? Talk about how it's changed from the early days to now.

Dr Alex del Rosario: In the early days, we were just trying to get medications out there and some of them were very difficult to take. And back then, you take it five times a day. And I remember having to take Crixivan every eight hours on an empty stomach. That was a difficult thing to do when you're a working professional and experiencing the medication side effects. You know, we were glad we were living longer, but they were having these long-term medication side effects they'd had to deal with. And I think that patients were grateful that they had a provider who understood firsthand what they were going through, what neuropathy was like, what, HIV lipodystrophy was like, the problems with developing diabetes on some of these medications. So, I think that that helped in that they felt that they were less isolated by having medical refresher that they can talk to them and personally about that and then also knew what it was like living with it day to day. And anytime you can make that sort of communication with your patient, I think it really does help their care.

Cheryl Martin (Host): And what about now when you look all these years, what has changed?

Dr Alex del Rosario: The medications are much more simpler to take. They've gone from, you know, multiple times a day to just once a day. And the pharmaceutical company has finally got it right. The medications are pretty side effects-free now. So right now, the big issue for patients is really the cost of medications. I have to admit that we in medicine both love and hate the pharmaceutical industry and that they give us medications that keep our patients alive and allow them to live pretty normal lives. But they're, here in the United States, very expensive. And in Palm Springs, we have an older patient population. About more than 50% of our patients are on Medicare and they switch to Medicare. The coverage of their medications are not as good. Sometimes we have to switch them to older generic HIV medications, so it's less of a financial burden on them because they're on fixed incomes now that they're retired.

So, those are the things that we're having to take a look at. Before, it was worrying about how to keep patients alive. Now, it's worrying about how to keep them on their medications with the least financial impact and the least physical burden to them for the medication.

Cheryl Martin (Host): Anything else you want to add about what's important for treating HIV patients that you did not cover in your last comments there?

Dr Alex del Rosario: Appreciating that there are all sorts of things that HIV touches outside of HIV. Before, it was done primarily by infectious disease doctors who would concentrate on their illnesses. Now, HIV positive patients are doing perfectly fine. They're not coming down with opportunistic illnesses and HIV care has moved more into the realm of internal medicine and family practice where you have to deal with things like hypertension, heart disease, cancer, because our HIV positive patients are living much longer and were dying of unfortunately all the boring diseases like heart disease and cancer. It's been a long, long time since any of my patients have ever died from HIV complication.

Cheryl Martin (Host): That's good news. Ben, what role has the nursing profession played in caring for HIV/AIDS patients and how has it changed over the years?

Ben Farber: I believe Dr. del Rosario mentioned this earlier, but care for HIV and AIDS in the early days of the epidemic was mainly on the inpatient side. And oftentimes, because this was a disease that wasn't well known, there was difficulty in finding people that were willing to care for these patients. And oftentimes, nurses were on the front lines of that care, particularly BSN nurses who were doing work to educate and learn about the disease, and also working alongside physicians in research opportunities to start finding better ways to treat them.

As we've seen the epidemic shift to mostly outpatient-based, we've also seen nurses shift and we are now seeing nurses that are certified in HIV care. There's a lot of work being done in clinics, not just from an actual treatment standpoint, but also to make sure that their care is managed, their cases are coordinated. There's education going out to the communities, and we're seeing nurses be involved in organizations that do things like needle exchange to make sure that we have some opportunities to help people avoid the disease altogether.

Cheryl Martin (Host): So, does that mean there's no longer a nursing shortage specifically in dealing with AIDS patients?

Ben Farber: I think the way we care for them today is different in that we have a lot more understanding of how the disease is transmitted. So, it would be a shock to me today on the inpatient side to have a nurse refuse to care for a patient.

Cheryl Martin (Host): Anything else you want to add on how nurses help to shape the care for HIV/AIDS patients?

Ben Farber: I would say that nurses were involved right at the beginning alongside physicians and other care providers in doing research and educating the communities and individuals in opportunities and what they knew about the disease at the time. Today, as the disease has shifted, outpatient nurses are still serving those same roles, but they're in different locations. So, we still see nurses participating in research. We still see nurses that are working to create avoidance opportunities. We see nurses that are working to make sure that people are managed in their care, and we see nurses that are making sure that we're following the best guidelines available. So, I would say that nurses have worked right alongside the rest of the provider team to shape the care through the whole epidemic. The other place that we've seen nurses more recently is in advanced practice positions. So, nurse practitioners that are working alongside physicians like Dr. del Rosario and providing direct treatment to patients.

Cheryl Martin (Host): Any challenges for treating HIV patients from a nursing perspective?

Ben Farber: I wouldn't say there's challenges. I would say what's really important for all of us to remember every day is that our job is to prevent stigma around anything. And the way that we care for patients is what can make patients feel unwilling to get care for any reason. So, from a nursing viewpoint, the most important thing that I could say in treating HIV patients is to make sure we treat them like everybody else coming in the door, and that we provide them the care they need when they need it.

Cheryl Martin (Host): Great. Dr. del Rosario, what do you perceive to be the challenges today with people living with HIV?

Dr Alex del Rosario: I think I had alluded to at least one, the cost of medications. We need to work on trying to bring those costs down because this is a long-term treatable disease, so we have to worry about the cost of medications. And then, access to care across our entire society. Here in Palm Springs, we have some pretty affluent community of retirees and working class, but the access to care is not equal. People of color sometimes don't have adequate access to care. They don't have the time to take off from their very busy jobs to come in to be seen by the physician. And also, you need sufficient representation of those minorities in the health profession so that people feel like they're being treated by people who understand what's going on in their lives. And that's what we need to work on, is getting more of a diverse treatment community out there as well.

Cheryl Martin (Host): And what kind of social services are available for those, let's say if they don't have any health insurance? Is there assistance for lowering those prescription drugs, for example?

Dr Alex del Rosario: Well, there's Ryan White Funding to help cover the cost of some HIV medications. There are clinics which are designed more specifically for the uninsured or underinsured patients, so there's a variety of places to access those care services. And we're fortunate here in Palm Springs. We have a variety of those types of clinics which patients can access. But again, access to those clinics is a little bit unequal, so we just got to make sure that those services are available, especially in other parts of the country which are more rural, there may not be equal access to those services.

Cheryl Martin (Host): This is a question I'll ask to all of you, beginning with Dr. del Rosario. Talk about Eisenhower Health's commitment to our HIV/AIDS community.

Dr Alex del Rosario: Well, I think we try to do our best to reach out to the patients. We do have a Men's Health Talk that we give at the Gay Lesbian Center. Once a month, we go over topics of interest to the gay community and also some that are specific for HIV positive community as well.

We are trying to do our best to recruit physicians, again into the treatment field for HIV. It's a little bit of a generational shift. I was the young kid on the block when we started out, but now I'm one of the more senior physicians. The physicians that had had experience to treat when the epidemic was raging and at its height are now mostly retired. And I'm about 56, I've got about another 10, 15 years of practice in me. We're going to need another generation of physicians out there who may not have had experience with when how the bad times were, but treatment paradigms have completely changed now because HIV is a long-term medical condition and we have to worry about all the other things like hypertension, diabetes, cancer screening, all those things now. And that's what we're trying to do our best, is to recruit those physicians and ancillary health providers so that we can reach out to those patient populations. We're trying to get more nurse practitioners in to deal with those sort of basic day to day maintenance issues, men's sexual health screening clinics, to try and get better coverage and PrEP clinics to try and get more people on PrEP and have a followup for that to help prevent HIV transmission. That's how we're reaching out to the community.

Cheryl Martin (Host): That's a great segue to me asking, Ben. From your perspective, you're in nursing, tell me about Eisenhower Health's commitment to the HIV/AIDS community.

Ben Farber: I'm going to answer this one as a nurse and as a leader for Eisenhower. Eisenhower is incredibly committed to providing care for the HIV and AIDS community. In addition to what Dr. del Rosario mentioned in his comments, we are a human rights campaign top performer for LGBTQ healthcare, which is something that we really value and are proud of. We've set up clinics across the Coachella Valley to make sure that people have ability to get care access in their own community with people who are going to be understanding of their needs and compassionate, regardless of what those needs may be. And we have programs that reach out to all aspects of the community that may be affected by HIV and AIDS. So in addition to the men's healthcare that we do and the care really aimed at LGBTQ healthcare, we also have addiction medicine care here and psychiatric care and, of course, emergency care for those who need it to make sure that we're reaching all individuals in the community and addressing needs from across the spectrum.

Cheryl Martin (Host): Brett, what about from your perspective as an employee and someone also living with HIV? What's your take on Eisenhower Health's commitment to the HIV/AIDS community?

Brett Klein: Well, I think Ben and Dr. del Rosario both covered a lot of that. But as a patient and also someone working within our system, I'm very honored and blessed to have this job and to be working here for this kind of organization. I was on the other end of the spectrum in San Francisco and then Los Angeles during the height of it and all the things that Dr. del Rosario said about physicians and nurses and other people that were not yet educated, not aware, not within the stream of what HIV even was and fearful and dismissive. And so, my process was very much on that side. And I'm surprised in many things, like so many others, that I lived to tell the tale and I didn't take my own life given the healthcare that I received at the time. And I'm very blessed in now looking back 30 years. And I have a wonderful, tremendous, healthcare stream within Eisenhower that is my provider, who is a specialist in the area. He has connectivity to infectious disease of people who are very world class and definitely known within the rank and file of HIV research and all that, so it's front and center for us. And then, I'm very honored to be able to educate the community at the fact that we have those services and that we provide it. And I use my own personal story to say I wouldn't be here without that. And I've been with Eisenhower on and off over the last 17 years in my care here in our valley. And I've had consistent, reliable, healthcare throughout.

And so, that only happens because we have a leadership from top down and bottom up, who have been educated and trained to understand and ask the simple question, and sometimes uneasy question of their patients to find out what they're going through. And so, I'm very thankful. And I think we are exemplary in what we do, and that's not because I just work here, but it's because I'm also a patient. And I feel that when I do whatever I need to do and ask the question, and my doctors all know that I come in with a list of five or 10 things, they know what to expect and I'm very grateful about that.

Cheryl Martin (Host): Well, you've touched on how your process and your healthcare access, how it's changed over the years, and your positive experience with Eisenhower Health. Tell us a bit about your initial seroconversion, and then also explain for the layman what that is.

Brett Klein: So, I was closeted at the time, thinking bisexual male. I actually tested positive and then, reality check, figured out that I'm a gay male, what a surprise. And my friends all laughed, like, "Yeah, duh, as we all know." But the reality at the in 1993, is I was a very active, very active in volleyball and cycling and all kinds of different activities. And I have a unique such scenario that still some providers look and say, "Huh?"

I seroconverted, which means that I acquired the HIV or, you know, the syndrome at that point, and virus orally not through other sexual activities, through oral. And that was because, unbeknownst to me, because the education wasn't out there, I was taking high dosages of ibuprofen because of all that physical activity I was doing. I didn't realize that that was thinning my blood and doing other things, and I was just uncognizant of the fact of transmission and how it worked or anything of that. And so, thankfully, I was living in Los Angeles. And the process for me was, I'd say back, kind of horrific and as a case in point to what Ben and Dr. del Rosario said about how we've changed, is that I had a physician who was my primary care for many years and I thought I had a great relationship with in his office. I had gotten a test, which was kind of the annual thing I did or every six months and I hadn't heard back. So, I called on a holiday weekend, you know, the Friday before and said, "I haven't heard anything in five weeks." I'm just casually just saying, "What was the result?" and not thinking the worst. And the nurse says, "Oh, hold please." She goes back, she talks with the doctor, comes back, and she says, "Oh yeah, the doctor says you tested positive. We can no longer see you in his office. We wish you well. We're going to send you a name and a number for an infectious disease doctor locally that may work for you. But have a good weekend."

Cheryl Martin (Host): So, what if you hadn't called?

Brett Klein: Yeah. Well, had I not called, I would be the epitome of someone living. And I think back to that moment, now that I'm educated, I knew when I seroconverted. I had the chills, I had fever, I had three days of this whole process, and I just attributed it to the flu or some random thing I got. And thankfully, I had friends around me that helped me get through that. And the best part is when you're faced with this, especially on a holiday weekend, like, "Oh, go out and enjoy your life, but I'm not giving you no hope." I had friends around me that nurtured me and said, "No. On Monday morning, we're going to, in this case, the Los Angeles Gay and Lesbian Center. You are going into care. They will know how to work with you."

And so, come Monday morning, I head off in Los Angeles to do that and I'm surrounded by the couple friends and I had a wonderful intake nurse who heard my story, grabbed my hand, looked at me in the eyes and said, "Honey, I have you. We have you." And it was so moving and releasing that from despair and literally thoughts of ending your own life or just my death sentence is going to happen in weeks, not knowing. I was put into a care stream very quickly, put on AZT put on other drugs, which have still to this day caused other healthcare issues as with so many of us who started early on those treatments. But we had the hope of relying on people, our doctors, our nurses who actually cared for us and understood because they were educated at that point even, educated and aware of what was happening around them. And they strove to keep you alive, not just dismiss you.

And I think that's where, as I said, I hearken back to my Eisenhower piece is that I know that if someone comes in our system, regardless of the physician they're seeing, whether they'd be an infectious disease specialist or HIV specialist, and something happens with that, they're immediately put into a stream of healthcare that they will not face what I faced back in the day. And that's a wonderful thing to see and like Dr. Del Rosario said earlier, that currently does not happen in many of our communities around the nation, especially the underserved, the lower income, people of color. It's still a forbidden topic that they don't address in some cases, which is really unfortunate and sad.

Cheryl Martin (Host): Brett, bringing it back full circle to World AIDS Day. How does World AIDS Day awareness and education support your personal service mission and mindset?

Brett Klein: For me, World AIDS Day is I celebrate, honor, however we want to do it, I think positively about where I'm at in my world today and my dedication to HIV and AIDS. And I do that through my commitment to AIDS/LifeCycle annually for the last 23 years, which is for those who don't know, 545 miles from San Francisco to LA on a bike, 10-hour days. It's very arduous, but you're surrounded in this love bubble. And I have many other activities throughout the year and World AIDS Day is the one moment where I get to stand in my soapbox and I invite my friends, colleagues, people who maybe don't even know me to hear a story, reflect on those we've lost; those who, for me, in many cases, in many of my circle, are living and aging with HIV. And that means understanding what the next phase of this illness might look like while we have medications and all this.

The service mindset for me and my job, thankfully, allows me to do this. And our CEO and other senior leadership allow me to openly talk about it in our community, is to focus on education and awareness and to reach the person who just may not ever have thought this could affect them and educate them a lot, because if it's not them personally, it could be a family member. It could be a grandson, a niece, a nephew, an uncle, any possible scenario. And for me, service is my go-to and World AIDS Day is my day where I get to stand on a soapbox and say, "Join me," you know.

And thankfully, the month of December is HIV and AIDS Awareness Month, and so Eisenhower has embraced allowing me to go out and we tailor our lectures for November and December and community engagement heavily into the awareness education of this topic, specifically among many others. But I'm just honored that they allow me to stand out there and do this, and my providers support me. Ben and Dr. del Rosario both support me greatly and I applaud them and thank them because I wouldn't do my job if I didn't have their support.

Cheryl Martin (Host): That's great. Any final thoughts on this topic on World AIDS Day from all of you?

Ben Farber: I have one, but I'm going to ask a question of Dr. del Rosario, if that's okay. I would hate to end this conversation without doing a quick testing advocacy piece, so I'm wondering if Dr. del Rosario could tell us the current testing recommendations.

Dr Alex del Rosario: Please still follow recommendations. For example, for our PrEP guys, they get tested every three months for HIV. Anyone out there who's engaging in sex with other men, bisexual men, we especially recommend that they get tested more frequently. We want to make sure that people understand that HIV is no longer a death sentence. This is a very, very treatable condition. And once people get over the initial shock of a positive test, they realize they do get plugged into care very quickly. The normal stream is to put them on medications as soon as possible to control the infection, and then it just becomes a life-long controllable disease, much like treating diabetes or hypertension. It's a little bit more complicated than that, so we still need HIV treatment specialists. But it's actually now the purview of just in general internal medicine and family practice to administer an HIV test at least once a year. And depending on how much sex you have, more frequent than that is needed.

Brett Klein: If I can add briefly to that, and I absolutely believe in everything just said with Dr. Del Rosario, I think one of the things that Eisenhower does exceedingly well on our end is that we partner in our community throughout our region. Because in some cases we don't necessarily service the individual or because of insurance or other aspects, but we work with all of our partners throughout the Valley, that provide some of those testing opportunities, specifically for women of color, Latinx women, and men in the East Valley of our community. We work with our LGBT centers. We try to figure out how to best get into these areas where it's still a topic which you cannot discuss in the home, you can't discuss in your church, there's so many different things. And so, we try to find those inroads and we do that in partnership with many of our other medical organizations here in the valley, which is a very good thing for us.

Cheryl Martin (Host): Thank you. Ben, any closing thoughts, comments?

Ben Farber: Thank you so much for putting this podcast together. I think it's so important. And as we move toward World AIDS Day, I really appreciate the opportunity to have the conversation.

Cheryl Martin (Host): Well, thanks so much to each of you, Dr. Alex del Rosario, Ben Farber, and Brett Klein, for being on Living Well with Eisenhower Health and for sharing your unique perspectives and insights in honor of World AIDS Day. For more information about HIV services at Eisenhower Health, just go to eisenhowerhealth.org/services/HIV. And if you found this information helpful, please share it with others on your social media. Living Well with Eisenhower Health, healthcare as it should be.