The Road to Diagnosis

This podcast is brought to you by IG Living magazine to give readers an opportunity to hear from healthcare experts on topics important to them. In this episode, we will be talking about one of the most important steps in patients’ journeys to diagnosis: their primary care doctor! 

Today, we have guest speaker Dr. Lisa Allen-Khalil. Dr. Khalil received her medical degree from the University of Nebraska College of Medicine. She’s a board-certified internal medicine doctor. Dr. Khalil has been in private practice for more than 30 years. 

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IG Living Advocate

Episode 6 - Issues Geriatric Primary Immunodeficiency Disease Patients Face When Accessing Treatment 

Hello, and thank you for joining us today. My name is Abbie Cornett, and I am the patient advocate for IG Living magazine. This podcast is brought to you by IG Living magazine to give readers an opportunity to hear from healthcare experts on topics important to them. 

In this episode, we will be talking about issues geriatric patients with a primary immunodeficiency (PI) face when accessing care.

Today, we have guest expert Roger Kobayashi, MD. Dr. Kobayashi is a clinical professor at the University of California, Los Angeles, School of Medicine. In addition, he is a national consultant for the Immune Deficiency Foundation and is on the executive committee for the Consortium of Independent Immunology Clinics. Because of his extensive work in clinical care and research, he is an expert on challenges faced by PI patients and their families.

Abbie: Good morning, Dr. Kobayashi. Thank you for joining me. In recent years, you have been writing and speaking about the increasing number of geriatric PI patients and the challenges they are facing. You did a presentation at the Immune Deficiency Foundation’s National Summit in 2020 titled “Primary Immune Deficiency in Geriatric Patients: Preserving the Golden Years.”  I thought we could cover some of the issue you discussed in that presentation and expand on them for our listeners. 

Several times over the last few years, you and I have discussed the looming issue of the aging population of baby boomers metaphorically called the silver tsunami and how the healthcare system is not prepared to meet their needs, let alone the needs of geriatric PI patients. Can you please explain to our listeners why this is a new phenomenon?   

Dr. Kobayashi: Thank you, Abbie. I would have to chuckle a little bit. I did not realize that I was part of the golden tsunami, but I would like to thank you again because this is an increasingly growing group of patients within the PI population. I think they have unique problems, and if we don’t deal with them effectively, there will be serious medical consequences, as well as serious health costs for all of us. And, all of us know that healthcare costs are skyrocketing.

Before I answer your question, I’d like to point out some major points that I would like the audience to remember. Number one and most importantly is that PI is not only a disease in infants and children, but it is in fact far more common in adults and the elderly. And, this may be a surprise, but failure to recognize this is going to cost us not only in terms of inadequate care for this age group, but also increased costs. The second point is that it is absolutely amazing that despite the heroic efforts and praiseworthy efforts of the Immune Deficiency Foundation, Jeffrey Modell Foundation, American Academy of Allergy and Immunology Clinical Immunology Society and many other organizations that these patients are still unrecognized. The third point is that geriatric PI is a unique subgroup with complex characteristics that include the co-existence of multiple serious chronic diseases that impact their PI, and we still don’t fully appreciate, recognize or understand that. Fourthly, the Internet and neural means of communication is foreign to our elderly patients, including myself. I don’t consider myself a nerd, but I have used computers since 1966, and I tell you it is complex. The fifth is that the elderly have decreased mobility, and this is something that we in the general population fail to appreciate. They also, even without an immune deficiency, are socially isolated because of the way we deal with the elderly. We put them out of mind and out of sight. We have a lack of support system for these individuals. Unfortunately, as we get older, we get more confused. Second to the last is that our healthcare system is extraordinarily expensive, very complex and highly bureaucratic, and unfortunately, healthcare reimbursement is being administered by federal government, which makes it even more complicated. Finally, our healthcare system is trailing in terms of effectively understanding and accommodating the unique requirements in caring for this group.

So, why geriatric PI? Number one, this is not a new phenomenon. We actually expected and anticipated this for decades. People are living longer. We have improved diagnostic methods. We have better treatments. And, we also appreciate the association with other diseases such as cancer and autoimmune disease that may be associated with PI. Secondly, patients are living much longer. Life expectancy in the 1900s was in the early 40s. Now, it’s approaching 80 years of age. And the longer we live, as you know, the more things that can go wrong. We’re just like old machines. We break down. We’re jalopies where, you know, our gas gauge doesn’t work, our tires get worn out, and arthritis and other degenerative diseases set in. We also have lifestyle diseases that have occurred and diseases of aging. The other thing is we have increased recognition of PI, certainly in the younger age group, but hopefully we will accomplish this in the older age group. 

There have been breathtaking developments in terms of antibiotics. It’s hard to imagine, but 30, 40, 50 years ago, all patients with PI died because of a lack of antibiotics. We now have intravenous immune globulin (IVIG) and subcutaneous IG (SCIG), which helps take care of many of these patients, but these are not cures. These medicines treat the symptoms and the problems. We have not cured the diseases. Transplantations, genetic intervention anticipation and prevention of the complications have all helped to make these patients live longer. However, there’s no such thing as a free ride or a free meal. We can look at these advances sort of like a two-edged sword. Number one, patients live longer, but we cannot completely cure many of the diseases. For example, with hypogammaglobulinemia, we can treat it, oftentimes effectively, but we cannot cure it. 

So, what does that mean? You generate a whole new series of downstream problems, resulting in chronic and oftentimes extremely expensive and complicated management. Secondly, the amazing thing is that despite the fact that many in the healthcare system are sort of aware of PIs, they still do not consider it as a problem. It is not rare, and in fact, we and others have done studies, and we have found that patients who are over 60 years old are far more commonly on IG therapy than patients under 20 years of age. In fact, about four times more common. So, this is something we have to appreciate. And, finally, in addition to managing these longer-surviving immune deficient patients, we are also diagnosing older new patients who often have repeated infections and complications such as bronchitis, chronic lung disease and other complications, which make management much more complicated and expensive. So, in summarizing that long answer, PI in the geriatric age group is an increasing problem. I would argue it is a much more common problem, perhaps, than young infants and children.

Abbie: Thank you for that explanation. The second part of my question is, as you mentioned, that the older generation has trouble dealing with technology, and technology is rapidly changing how care is being provided in many ways — from how patients access their medical records, make doctor appoints and, since the pandemic, it’s even changed how they meet with their physicians. How do you think technology impacts geriatric patients, and can you explain what your biggest concern is for this population?

Dr. Kobayashi: I know technology is a wonderful thing. I’m from a family of engineers. My father was disappointed that I didn’t go into electrical engineering rather than medicine. With technology, we don’t have to go to libraries. We can order pizza on the Internet and all of these kinds of things. But I think sometimes technology is the vigorous tail that wags the dog. And, unfortunately, the people who manage and implement technology are what I call computer nerds who sit down on their rear ends all day thinking that the rest of us absolutely know how to do technology. I would argue a good case in point. When we first introduced COVID vaccinations and we had online sign up, I would say the vast majority, 99 percent of the elderly, had a hard time getting online, if at all. Even normal highly technologically skilled individuals had a hard time getting online. 

I think there are several serious issues that confront the elderly. First of all, the technology is so rapidly advanced that in medicine, even to make an appointment, to check your laboratories or get notified by the doctor, you have to go online. For example, to make appointments, you call the doctor’s office, and you get 10 choices, and then when you press the fifth choice, you get 10 more choices. So, it’s very difficult to interact with the healthcare system. Try to interact with your hospital, try to interact with your lab, try to interact with your pharmacy to get medications. It’s very very complicated. It’s bad enough, for example, with the airlines cancelling or delaying people’s flights. Even the smartest — what do they call these “road warriors” — have a heck of a time trying to interact with the Internet to change their reservations. Can you imagine something more serious than that? I mean, so what if your vacation got delayed? But imagine if it’s your healthcare system! 

The other thing about the Internet is that there are so many people now involved and so much information that’s being generated by these computers that things get missed. Let me give you a couple of examples. Number one: My wife’s mother has Alzheimer’s. She also has kidney disease and significant heart disease. When she went to see multiple specialists in Georgia (and I’m not picking on Georgia, she just happens to live there), every single one of those doctors did not look at the medical records. They put down her mental status was completely normal, her heart was completely normal when she was in congestive heart failure, her kidneys were fine when she has diabetes and kidney problems and she lost 40 pounds. They said everything was fine. The problem is that the healthcare system is so complex, and the amount of information is so overwhelming that it’s difficult even for people skilled in the area to extract information. And when you’re dealing with older people who have a hard time even ordering a pizza or an ice cream online, can you imagine when you have to deal with this highly complicated healthcare system? And, finally, the elderly is much more complicated with multiple healthcare problems and dealing with multiple different specialists, laboratories, pharmacies, hospitals, etc. The healthcare system has made it much more difficult with the Internet and neurotechnology for older people to interact. Let me give you one more example: When I was transferring airplanes in San Francisco about a month ago, I got hungry, and the airport of all things had a Vietnamese sandwich vendor. So, I went to order a Vietnamese sandwich and, much to my amazement, everybody was ordering online with their smartphone. But when they went with their smartphone to get the order, they were yelled at by this young guy who said: “You didn’t put this in, you didn’t put that in with your smartphone!” I went up to the counter. I didn't order by smartphone. I just said I want a regular Vietnamese sandwich. So, the guy got angry and says, “Well why didn’t you use a smartphone?” I said, “Because you’re standing right in front of me, and I just want a regular sandwich. I don’t want chili peppers. I don’t want anything else.” Well, he didn’t know what to do because he was, I hate to say it, a damn nerd who didn’t know how to interact with people. He was more interested in looking at his computer terminal, and he was aghast that I didn’t know how to order something on the smartphone when he was right there. I mean, why did somebody give us a voice? Why don’t we get rid of those kinds of guys? 

I’m pretty adamant about this in the healthcare system. Information is being developed by these kinds of people who don’t know how real people interact with each other. And, in the case of healthcare, it is absolutely critical that you get accurate pieces of information. I hate to criticize, but in the old days when I had a kid who had strep throat, the doctor would write “strep throat, penicillin.” Three words. When I got medical records from Children’s Hospital in Omaha, I got about a 200-page document of hospital records on this patient I was evaluating, and among them were eight pages just to talk about strep throat. So, I had to go through eight pages to figure out this was a visit for strep throat and what the heck they were doing. So, can you imagine the elderly with complex health problems dealing with multiple different kinds of entities, ranging from specialists, to hospitals, to labs, to pharmacies, to home infusion companies, etc., navigating all of this and getting frustrated because they can’t interact? So, what is the default position? They go further into isolation. And the problem is COVID has magnified all of this and has made it a perfect storm to isolate them even further. It has also put a burden on our system because many nurses have left the healthcare system. So, we’re getting like the airlines; we have increased demand with decreased ability to handle this. 

On a personal level and getting to my largest concern about the complex technology, is that it is far more difficult even for the most educated. The big example is signing up for the COVID vaccine. You couldn’t get on the website. Then, finally, when you got on, you had other choices. When I was about 35, I flew a million miles. And now, when I try to make airlines reservations, I click on something and then it says, “no that’s not available.” Then, when you go back to try and do something else, the thing has changed all of a sudden. A simple thing like that! Can you imagine dealing with our healthcare system where you have reimbursements? I found out the hard way when we were going on vacation. I thought, what the heck, I’ll just get some antibiotics just in case my grandkids get sick. But when I got them at Walgreens, it cost me $3 for one prescription and $7 for another. Well, my insurance changed, and when I went to CVS, for the same medications, it now cost me $140. I said, “Well, wait a minute, what’s going on?” And the pharmacist said, “Well, you know, if you order the 875 milligram one, it would have cost you $40; you ordered the 500 milligram one (which is less than 875 milligrams the last time I heard), and it’s $90.” How would I know that? Now imagine the elderly dealing with a laboratory test or a medication or a home infusion company or going to a specialist that was in-network and dealing with all of these kinds of complications to figure out what’s going to be reimbursed. It’s overwhelming. 

The take-home message is that the system is geared to satisfy itself, not to serve the elderly, not to serve the patient. We need to say to the nerds out there: “You are serving the patient; you are serving the elderly. You need to find out what they can do and how they need to interact with the system.” Who cares whether I get no chili peppers on my Vietnamese sandwich. The fact that there’s a laboratory test out there and they were notified by the Internet, but they didn’t know how to access it, could have serious implications for these individuals. 

Abbie: I can’t agree with you more. Concerning scheduling tests, I was trying to schedule appointments for my daughters to have COVID tests in Los Angeles, and it took me hours to figure it out because it kept coming up booked. And then, I’d have to start over, and it was kind of a nightmare. It’s not just the elderly who are facing technology problems. But, I can certainly see how it would impact them harder. That brings us to my third question. Technology is a big issue, but the elderly also face a number of other issues when accessing healthcare such as memory issues, lack of mobility and cognitive issues. Can you discuss the complexity of the healthcare system and how it fails to address these issues for geriatric patients?

Dr. Kobayashi: Let’s go back to the old horse-and-buggy days. Taking care of the elderly was much more complicated even then. They had multiple chronic health problems that were complicated. I’ve been a doctor for 50 years, so I know how things were before all the electronic means of communicating with patients. It was very difficult because you had these complicated patients with heart disease, diabetes, high blood pressure, memory loss, severe arthritis, etc., and they had problems taking medicines or doing things. And then, they couldn’t remember. They would come and they would put out 30 pills that they were supposed to take. I can’t even remember to take my vitamin pill in the mornings. Can you imagine if I had to take 30 medicines? And what happens if I forget, and I say, “Oh, I forgot, so I’ll take double the amount since I forgot yesterday’s.” 

It’s so much more complicated to take care of elderly patients; you’re taking care of people who don’t have the faculties of a 21-year-old person mentally, physically and remembering things. So this is a problem. You have the impact of cancer, you have the impact of heart disease, you have the impact of high blood pressure, you have the impact of arthritis. We just had a paper published about being very careful if you’re giving IVIG to patients who might have underlying kidney disease that you don’t know about. The point you bring up about memory loss is absolutely critical. These patients are frail and they have decreased mobility. They can’t do simple things like getting into the car and driving to a doctor’s appointment. It is a huge problem. I have a couple of patients who can’t even remember to do their SCIG. There have multiple specialties managing multiple medications. I’ve told you about all of these specialists who were taking care of my mother-in-law with Alzheimer’s, and all of them said her mental capacity was perfectly normal because they were so busy entering data, they didn’t look at the past records. The other issue is because of their frailty and their inability to remember. How do we know that they’re doing their SCIG at all on a regular basis? We don’t monitor these individuals. What we do is we mail them the IG product, and we assume that they’re taking the medicines as they’re supposed to. We assume that they’re doing well when, in fact, they can have chronic lung disease that is getting progressively worse. They might even land in the hospital with pneumonia because they were not taking the SCIG on a regular basis, and we did not know. The problem with SCIG is if you miss a dose, you still feel perfectly fine because you don’t get into trouble until later. It’s kind of like batteries nowadays. In the old days, if your car battery was wearing out, you would know. Now, your battery works perfectly fine in the morning and then at 5 o’clock in the afternoon when you’re all ready to go home and go out to dinner, your car is dead. It’s kind of the same thing with SCIG. With antibody deficiencies, you don’t get into trouble until some bacteria comes along.

I’m a pediatrician by training, but what made me very interested in the geriatric problem was I had two wonderful couples who I took care of. One was a retired Supreme Court justice who took care of his wife, and he did everything like a good faithful husband should do. Then, unfortunately, he had a stroke and, all of a sudden, she wasn’t being treated. But, we didn’t know that until she got sick. I had another couple that was a couple like out of an American 1950s “Ozzie and Harriet” television show. She had severe lung disease we diagnosed at the request of the pulmonologist. He took wonderful care of her, and she got much better. But, unfortunately, he developed Alzheimer’s, and so he couldn’t take care of her, and she worried about him. Then, shortly thereafter, she died, and I said, “What is going on here? Who is taking care of these older patients?” 

For example, Optum has 500 patients who are well over 65 on IVIG. If you want to transfer them to SCIG, can they do it? A lot of these things we don’t know, and we have often geared our healthcare system to fit our perspective and our needs and not necessarily that of the patient. And this is the thing that disturbs me the most. The patient exists for our convenience. For example, a pediatrician would get upset because the mothers wouldn’t show up with their kids or they would come late. Well, the mother works, the mother has to cook, the mother has to take care of the kids, the mother cannot take time off nowadays from work to take the kids to all these doctor visits. This is the same thing with the elderly. What are their needs, and how can we serve them? I remember when I was at UCLA I said, “You know, without the patient, no UCLA, no Medicare, no Medicaid, no insurance companies, no hospitals, no pharmaceutical industry, no home infusion, none of this would exist without the patient.” And yet, we look at the patient as if they are there for our convenience. And this geriatric age group has increased not only in terms of other healthcare problems but in terms of PI compounded by other healthcare problems and limitations that we need to address.

I don’t want to be pessimistic because we have made great progress in many areas in taking care of these individuals in terms of medications, in terms of diagnostic advancements, in terms of preventing disease. We’ve made wonderful progress. But I would argue we have not done enough. We’re just scratching the surface. We have created all these wonderful developments with downstream complications, which we need to address. People are living longer. People with severe chronic disease are living longer. But it means that they’re more complicated to take care of, and we need to anticipate these things, because if we fail to do this, not only will these patients suffer in terms of medical problems, but we will all suffer in terms of increased, unnecessary healthcare costs. We have to change our way of thinking and our perspective — not about how we want the elderly to interact with our healthcare system, but about how our healthcare system can interact with them and serve them in the fashion that they deserve to be served. This is what Tom Brokaw called the greatest generation, and I think we owe it to this age group to serve them in the proper fashion. 

Abbie: Dr. Kobayashi, before we wrap it up, I have one comment to make. One of things that I have worked on through my continued studies is that it became very apparent that the healthcare industry is the only service industry that isn’t set up as a service industry. People do not realize that healthcare is no different than going to get your care repaired in a lot of ways or going to a restaurant and that it’s even more important than any of those things. And, the person who is purchasing the service, the patient, is the last person who’s considered, which is completely different than any other service industry. I’m glad you touched on that. It’s been a real pleasure to have you as our guest today. I want to thank you again for joining us to discuss the issue of aging immunodeficient patients. I’m sure our listers found it very informative.

Listeners, thank you again for joining us today. Additional information regarding this podcast can be found on our website at www.igliving.com. If listeners have a question that was not answered, please contact me at acornett@igliving.com. Look for the next IG Living Advocate podcast announcement on our website for the opportunity to submit your questions.

IG Living Advocate is a copyright production of IG Living magazine published by FFF Enterprises. It is the only magazine for the immune globulin community comprised of patients who suffer from chronic illness and their caregivers.