Medical facilities: Please keep your immune-deficient patients safe [PODCAST]

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“I have a form of genetic primary immunodeficiency and several heart issues, among other things. I know that I need to be far more vigilant than someone with a fully armed and operational immune system, so I try to take as much responsibility for that as I can.

First tactic: Not going out at all. I’ve followed doctors’ orders on this one and have only left my home for medical care since March 2020. Most medical appointments have been conducted online for the past year. More than a few conversations with my doctors have included some variation of the phrase “we’ll schedule this when it’s safer.” But some, such as my infusions, imaging, and bloodwork, must be done in person.

Second: I try to get the first appointment in the morning, no matter how early that might be. I’ve been scheduled for MRIs at 6:30 in the morning. Being there early usually means that there are fewer people in the facility.

Third: I ask if there’s an isolated place where I can wait. I’m not trying to cut the line. That needs to be understood. I’ll wait as long as you need me to. ‘Patient’ is both a noun and an adjective. I just need to do that somewhere that is not a crowded waiting room. I have an immune deficiency, I pick up infections a bit more easily than some of your other patients, and we’re in a pandemic.”

Denise Reich is a patient advocate.

She shares her story and discusses her KevinMD article, “Medical facilities: Please keep your immune-deficient patients safe.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we welcome back Denise Reich. She is a patient advocate, and she wrote the KevinMD article “Medical facilities: Please keep your immune-deficient patients safe.” Denise, welcome back to the show.

Denise Reich: Hi, thank you for having me back. It’s great to be here.

Kevin Pho: So we’ll get into the article in a little bit, but for those who didn’t get a chance to listen to our first interview, can you just briefly share your story and journey to where you are today?

Denise Reich: Sure. I’ve been diagnosed with a couple of genetic, congenital conditions, the most pertinent of which is primary immune deficiency: failure to make antibodies, to keep antibodies, and to adequately fight infections. That basically means that if I’m not under treatment, I get a lot of infections, which can become serious. I also have some heart issues; I have inappropriate sinus tachycardia. I went through a very long period where I was sick but I was not diagnosed, and ironically, even though I was born with primary immune deficiency, I wasn’t diagnosed until I was older than 30.

So basically, right now what I try to do is to tell my story and share my voice. If one patient can escape the misery that I escaped with trying to be diagnosed for years, it will be something important to me.

Kevin Pho: Now, for those who aren’t familiar with primary immunodeficiency, can you just give us a sense of some of the challenges that you face on a daily basis?

Denise Reich: Basically, the two biggest challenges are these. Number one, if I get an infection, it’s harder to shake. So if somebody has a cold and they don’t really care about being around other people, if it’s just the cold, that could not be out for a month. It could lead to a lung infection; it could lead to other serious issues. The other thing is that I’m just way more capable of getting infections. I mean, before I was on treatment, there were years I was on antibiotics for about 300 days, and there were years in college where basically every three weeks it was an ear infection, a throat infection, or a respiratory infection, and they just kept cycling. So for me, the biggest thing is that infections are the boogeyman. Infections are the thing we want to try to stay away from at any cost.

There are some other issues with primary immune deficiencies, comorbidities. We have more of a chance of certain B-cell cancers, lymphomas. We have a lot of comorbidities. A lot of us also have autoimmune diseases, which is a really weird paradox: In one sense the immune system isn’t working, and then on the other side, it’s doing way too much, but of the wrong things. So we do face a lot of struggles. A lot of us have ongoing fatigue, brain fog, aches, and pains, because unfortunately it can become a systemic thing.

There are some people that are lucky enough that they get infusions and they have a transplant for some types of immune deficiencies, and they’re OK, or they have a much easier time. But then there’s a lot of us who unfortunately don’t have that experience. The only real treatment they can give us is IVIG or subcutaneous immunoglobulin, so that’s basically regular transfusions of immune globulin, by subcutaneous or intravenous. It’s not a cure. The analogy I give is that it’s like a type 1 diabetic getting insulin: It’s replacing something we don’t make. So giving it to us isn’t going to cure us, but it will kind of hold off some of the bad stuff for a while, and we will have to go right back in and get another infusion once these antibodies wear off.

Kevin Pho: Now, tell us some of the infection prevention things that you do on a daily basis because of your primary immunodeficiency.

Denise Reich: A lot of hand washing, a lot of hand sanitizing. When the pandemic started, I was actually a little ahead of the game, because those were things I was already doing. Really, some of it’s also from growing up in a major city: When you get home, you take your shoes off, you wash your hands, you change clothes. You don’t have the outside stuff coming into your house. For me, that’s all kind of exaggerated now. We wipe off the light fixtures with Clorox in my house, Clorox wipes. We make sure that I wash my hands as soon as I get in the house. Mail is in one specific place.

If I’m out and about, I try to avoid crowds as much as humanly possible, and that was true even before the pandemic. I mean, every now and then there might be something like a treat, like a concert or something, but even with those, I’m looking around: OK, where can I sit where I don’t need to do stairs, because I can’t be scared because of my heart issues? Where is it going to be outside of the throng as much as possible? Where can I sit where there’s going to be some air around me? And I did wear masks outside a lot of the time during the pandemic if I was going to be even on a bus or something of that nature where there were going to be other people around.

So really, it’s just a lot of washing, a lot of cleaning, and a lot of distancing. And I did tell friends and family, “If you have a cold, if you have any sort of infection, if your child does, please tell me. I can’t be with you that day. We need to reschedule,” because it is feeding dress.

Kevin Pho: All right, let’s transition into the KevinMD article that you wrote. This was back in April. It’s titled “Medical facilities: Please keep your immune-deficient patients safe.” Now, for those who didn’t get a chance to read that article, can you just walk my audience through it and share the story of why you decided to write it?

Denise Reich: The article was prompted by a number of encounters I had getting in-person care. I do require a lot of monitoring. I go for my infusions in person every two weeks, and there’s no real way to avoid that. You can’t do an intravenous infusion over Zoom, as much as we might like to. But unfortunately, some of the medical facilities that I was going to were not really taking it seriously for immune-deficient patients. They were having us wait, having people like me wait in crowded waiting rooms. They just maybe taped off a chair or two and took the pens away. They were letting other patients crowd; they were letting patients take off their masks. I went to one medical facility where the staff was completely blowing it off, and they didn’t have masks on.

It really makes it hard to get care in person, because I’m constantly worrying just walking into the waiting room: Is that going to be an issue with this pandemic? I mean, I’m in a group where I do not want to get COVID. You know, nobody does, but I really don’t. And unfortunately, when these concerns are brought up to the medical facilities, a lot of the time the front-line staff is very indifferent to it. I mean, I’ve never had a doctor be indifferent to it, but the staff that you’re dealing with on a day-to-day basis, when you’re checking in, when you’re making the appointments, a lot of the time they just roll their eyes at it. They don’t understand that it is a reasonable accommodation for an immune-deficient patient to ask to isolate, to be kept away from other patients.

Kevin Pho: I need to be a little more specific. So what are some things specifically that medical institutions should be doing when it comes to encountering immunodeficient patients?

Denise Reich: They need to make sure that we’re not in crowded waiting rooms that are poorly ventilated. They need to make sure that we have an isolated place to wait. That could be the sidewalk, because everyone’s offices didn’t change just because we had a pandemic. You know, medical staff cannot just make new rooms from their existing office; that is totally understood. But that is kind of cooperating when a patient says, “I’m going to wait outside,” or, “I’m going to wait in my car,” because I have encountered medical facilities where they say, “Well, you can go outside, but we won’t call you.” They just will not cooperate with that. So getting some cooperation when a patient is trying to distance themselves and go to a more isolated place, if it’s at all possible.

A couple of my doctors that are really good about this will immediately get me into a room, and it should be understood that this is not jumping the queue, because I think that’s what the front-line staff thinks sometimes. I’m not saying, “Oh, I have an immune deficiency, see me first.” I’m saying, “I’ll wait an hour for you. I’ll wait 90 minutes for you if you’re backed up that day. But let me do that where I’m not sitting next to everybody else.” So I have a couple of doctors that will just put me in an empty exam room and just have me hang out there, and that is a really good solution, because then I’m waiting, but I’m just not surrounded by everybody else.

I’m trying to think what else. I went to one imaging place where they had a waiting room outside. You know, we’re in a warm climate. That’s not something that other places necessarily have the luxury to do, but in a warm climate, it was certainly helpful to be able to wait outside, and they had chairs set up.

And then I think also making sure that the staff is on board with what protocols exist, because there have been two times when I’ve booked appointments, and then when I call and speak to the management, there’s an entire protocol on how they isolate immune-deficient or vulnerable patients, but the receptionist doesn’t know it. So the receptionist is telling me, “Well, there’s nothing I can do. This is what we have, sorry,” and isn’t aware of the protocol that her own facility has in place. So it shouldn’t just be the management that knows this protocol. It should be that the front-line staff has it posted, just like they have the emergency exits posted, just like they have their phone extensions posted: If a patient comes into that phone, they’re going to do A, B, and C for them.

Kevin Pho: Now, do you think that after COVID, where we did institute a lot of these isolation procedures, any of those practices would carry over going forward?

Denise Reich: I think spacing patients out is always a good idea, you know, regardless. I think the cleaning is always a good idea, because I think it’s been brought up that this year we saw a lot fewer colds; we saw a lot less flu. Those things can be, I don’t want to say just as devastating, but they could certainly be devastating in their way to somebody. We do have people that die of the flu everywhere. So I think just from an infection prevention standpoint, keeping the cleaning, keeping the distancing, having a bucket with clean pens and dirty pens, those are good things that facilities should consider keeping, because they’re little things that keep their patients safe. Somebody coughs and then picks up a pen, and they’re not giving it to the next patient.

Kevin Pho: We’re talking to Denise Reich. She is a patient advocate, and she wrote the KevinMD article “Medical facilities: Please keep your immune-deficient patients safe.” Denise, for those other immune-deficient patients who may be listening to this podcast, what’s a piece of advice that you could give them in terms of staying safe after the pandemic and encountering a medical facility?

Denise Reich: I think the first thing is to do as much as you can to be proactive. Don’t just show up at a doctor’s office or a hospital facility and think that everyone’s going to know what to do. The first thing I do is that I try to be at the facility when there are fewer people there. So when I call to schedule something, I will say to them, “What is your earliest appointment? When are you the least busy? Is there a day that you’re doing surgery, so there are more people there?” You know, I try to strategize with whoever I’m talking to so that I’m not coming into the office at their busiest time.

So if that means going in at six in the morning, it does. I actually had an MRI at six o’clock in the morning yesterday, so I walk the walk on this. And so if there’s an appointment at the crack of dawn, I’ve gotten to medical facilities before sunrise to go in. Not everyone can do that, but if you can, I think that that’s the number one way to try to keep yourself safe, because when you’re there at 6 a.m., it is not going to be as busy, and you’re not going to have as much traffic and as many people around you. You might be the only one in the waiting room, so that solves the problem.

I think the other thing is to just make it clear what your needs are, because the person you’re talking to might not understand what an immune deficiency is. They might not understand why you’re even asking them this question. I’ve had medical staff confuse immune deficiencies and autoimmune disease, and I’ve even had people say to me, “Oh, yes, I have that too. I have lupus.” Well, you have an autoimmune disease; you don’t have the same thing. So I try to be very clear and say, “I’m high-risk. I pick up infections easily. It is for this particular reason. I would like to be isolated as much as possible.”

And I always try to be polite. I don’t get angry. I don’t demand people do things. I just try to say, “What can we do at your facility? Do you have anything in place?” I will suggest to them, you know, “If there’s an open exam room, I’m happy to sit there. I’m happy to sit outside. Tell me what I can do that will work with your facility.” And that helps sometimes. When I’ve said things like, “Could you just take me to an empty exam room,” then sometimes the light bulb will go off: “Oh, OK, we can do that.” And I also do emphasize that I’m not trying to cut the queue, that I’m not saying I’m first. I’m just saying, “Let me wait where I’m not around your other patients.” And again, that usually kind of turns the light on sometimes when I’m talking to schedulers, that they’re like, “OK, this patient is not trying to be pushy. They’re not trying to get, quote unquote, special treatment. They’re just trying to be safe for these particular reasons.”

And then I also do ask that they put a flag on my chart, so that when I get to the facility, there’s a record that I’ve spoken to somebody, that I’ve already made these arrangements. That’s something from experience, of getting there and they don’t know what’s going on. So I try to make sure that there’s some type of note there, some type of flag, so that when I get there, whoever’s checking me in at the desk says, “Oh, yes, OK, we know what to do. We’re here.”

And those are some of the things I think that patients can do to try to work with the facilities, especially if it’s someplace they need to go often, because for so many of us, we are team doctors a lot of the time. I mean, for myself, I’ve tried to put most of my doctors in the same hospital system so they can talk to each other. So, like, six of my doctors have the same address, and it’s the same set of offices in the same building. So if I can get things set there, it’s a lot easier for me overall, because I’m not wrestling with this every single time I have to go in.

Kevin Pho: And Denise, my final question: What’s your take-home message that you want to leave with the KevinMD audience?

Denise Reich: If you are a doctor or a medical facility, please understand that some of your patients coming in are going to be vulnerable, whether that’s an immune-deficient patient like myself, whether it’s somebody going through chemo, whether it’s somebody on immunosuppressant drugs, organ transplant recipients. You might be taking every precaution that you can, but that still might not be enough for somebody who’s especially vulnerable. So please work with your patients. Tell your staff to work with the patients. Cooperate. Formulate some tactics that will help keep your patients safe, whether that’s having them wait outside in their cars, whether that is putting them in an exam room, whether that is coordinating telemedicine. Cooperate. It has to be a collective effort.

And for everybody, please support the bills that are going through Congress right now to expand telemedicine, because the more access to medical care people have, the healthier we’re hopefully all going to be.

Kevin Pho: Denise, thank you so much for sharing your time and insight, and thanks again for being on the show.

Denise Reich: Thank you so much.

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