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Dr Gerry Lee: Primary immunodeficiency disorders or PID DS affect all races and ethnicities, but certain groups have experienced greater social or economic barriers to diagnosis and treatment. The goal of the moving toward equity podcast series is to raise awareness of the challenges, strategies, and resources for moving the needle toward equitable immunology care for all patients and practitioners and all communities.

Welcome to the podcast series from the American college of allergy asthma and immunology. My name is Jerry Lee, and this is the final part of our three-part series entitled moving toward equity, disparities, and primary immunodeficiency disorders or PID DS in this episode. we'll discuss improving access to treatment for PIDD in minority and underserved populations.

Joining us today is Dr. Vivian Hernandez, Trujillo director of the division of allergy immunology. And the fellowship trading program director at Nicklaus children's hospital. Dr. Hernandez Trujillo has been involved in Hispanic outreach for over 20 years. And she has partnered with both the immune deficiency foundation and the ACA AI as well as media to increase awareness of PDDs through programs in Spanish for healthcare professionals and patients on PhDs.

And most recently on. And Dr. Carla Davis, the chief of immunology, allergy, and retroviral Knology section of the department of pediatrics at Baylor college of medicine at Texas children's hospital and the Janie and Sandra queen endowed chair in immunology and HIV aids. Dr. Davis has been involved with the identification of health disparities in the field of allergy menology and as for research and primary immunodeficiencies for the past 20 years.

Thank you once again for joining us doctors

Dr Carla Davis: It's great to be here, Jerry. Thank you for having us,

Dr Vivian Hernandez-Trujillo: And thank you so much to the college for actually addressing this much needed discussion.

Dr Gerry Lee: And so for the focus of this episode, we want to talk a little bit about access to treatment. So let's start with you, Dr. Hernandez, Trujillo. What are some of the treatments available for primary immune deficiency disorder?

Dr Vivian Hernandez-Trujillo: As we've gotten better at diagnosing and how to increase genetic diagnostic abilities. Our treatments have also expanded. And for the sake of time, I'm going to keep it brief, but really there's many, many different treatments that exist for primary immune deficiency diseases. So starting with antibody deficiency disorders, the antibody replacement can be either intravenous immunoglobulin or subcutaneous immunoglobulin for patients with T-cell disorders, such as severe combined immunodeficiency.

The patients may be candidates for. Hematopoietic stem cell transplant or in the case, for example, of, uh, Dennis and deaminate deficient skid, they can be, candidates for enzyme replacement for patients with complete DiGeorge dynamic transplantation may be a treatment option. When we look at our patients with neutrophil disorders, they can be treated with prophylactic antibiotics, interfere on gas.

Or they may be candidates for hematopoietic stem cell transplantation, and then our patients with compliment disorders, prophylactic antibiotics, and the use of vaccination with polysaccharide vaccines are essential. There's other types of primary immunodeficiency disorders, which have been more recently understood.

and biologic treatments and therapies are a treatment option, including CTL. Or deficiency, for example, which is a form of CVAD with severe auto-immunity and then for auto inflammatory bowel disease, where a bad receptors, CTLA four IgG is helpful. And then there's a host of other diseases, including autoimmune colitis, where the use of biologics, including infliximab a TNF inhibitor can help with disease control.

So there's a wide variety of treatments and it continues to expand as we better understand these things.

Dr Gerry Lee: Yeah. So it sounds like we have lots of treatment options such as replacing immune globulin or the newer biologic therapies to help patients with primary immunodeficiencies.

But Dr. Davis, what would be some of the barriers to receive some treatments like immune globulin or biologics

Dr Carla Davis: Well, after the diagnosis of primary immune deficiency disease, patients can really experience a lot of difficulty coordinating their health care, and that can also result in a sense of isolation and some helplessness. because these are rare diseases and unless we, as healthcare providers connect them with other patients and families with resources that were addressed in the other podcast with immune deficiency foundation, the Jeffrey Modell foundation, the diagnosis can be, again, very isolating.

So we've got to have. Culturally competent education regarding the importance of these therapies, both the immunoglobulin, as well as the biologic therapies, because the patients need to understand that controlling disease is really important and delays might occur. if the family doesn't really understand the critical nature of the treatment, so this can be a pretty big barrier.

And as we know, in order to receive any of these. Therapies. There's an approval process that is necessary. And, working with insurance companies can be daunting. it could require communication from the patient, with the insurance company, or having some kind of electronic medical record excess.

Online access for communication and they're not as, prevalent in minority populations to exist as well as there may be some time constraints, regarding, working during the day, populations are less likely to have flexible work era jobs, potentially less access to reliable.

Transportation. And these disparities, that exists, with regard to the ability to get this immune globulin and biologic therapies. We know that there are disparities, with access to the internet and, electronic medical record services. so really, healthcare navigation, I would say is, are some of the barriers, to immune globulin and biologics.

Dr Gerry Lee: Wow. So that's a lot of challenges. Whether understanding the treatments you're receiving, actually affording the treatment and navigating the system to receive the treatment. So for the individual clinician, what are some of the tools we can use to make sure our underserved minority patients get access to immunoglobulin or biologic therapies?

Dr. Davis.

Dr Carla Davis: Yeah, I think first, individual commissions can ensure, as we've stated before that there are no language. Cultural barriers, to the families or the patient's understanding of the diagnosis and available treatments. this includes assessing health literacy then making sure that there is someone who is speaking with the family in their own native language.

so culturally competent communication is super important. having somebody who is trustworthy, Develop that relationship. and then I would say, the patient or their families should be connected to a patient health care navigator can be a nurse, a social worker, community health worker, who could help the patient navigate this insurance approval process for these therapies.

that's been very successful and a person in the office can do this. also making appointments in advance with attention to transportation. Being aware of financial hardships and the, and ensuring that appointments are available, around work schedules, can officer militate access, patients that also.

No in advance, what copay assistance programs, financial resources available. And there is a wonderful online resource called aunt Bertha, slash find help.org. That is an online resource that can be used to help. So I would say that a patient healthcare navigator is a great way to help patients who have been diagnosed with PADD.

You get their appropriate.

Dr Gerry Lee: Oh, what a wonderful resource to have an advocate for the patients who need them well, switching over to hematopoietic stem cell transplantation, Dr. Hernandez, Trujillo, what would be some of the barriers and minority underserved populations to get a potential cure for their immune system disorder?

Dr Vivian Hernandez-Trujillo: So as we discussed, previously, you know, one of the problems is that even in, studies and in research, we really. Included a wide variety, of patients. And I think that's something that while some research regarding stem cell transplant and minority populations has been done, further studies truly are needed.

there was one particular study where there were limited numbers of eight out of eight, HLA. Uh, Leo matched unrelated donors for patients of non-European background. This included Asians, white Hispanics, middle Eastern, and those of African ancestry as compared to Northwestern Eastern and mixed European ancestry.

And not further. The disparities, which is a very, a really for ethnic and racial minorities. And while they did see increasing participation in the bone marrow donor program, that disparities persisted. So that really is concerning, studies investigating factors related to bone marrow donations. People said, you know, they were fearful. They weren't trusting. This is also associated with their intention, not to want to donate bone marrow, again, an area of concern. And then the lack of educational resources. In the patient's primary language actually further contributes to the barriers to hematopoietic stem cell transplant.

As they may not even be aware of this as a treatment option for their primary immune deficiency disease, and then the need to understand that they need to seek timely medical care. Right. If we wait too long, if transplant happens, we know that if transplant happens before. debilitating or life-threatening infection, then the outcomes will be better in our patients.

So this is all information that really needs to be understood and the patients need to receive better education and understanding of.

Dr Gerry Lee: Well, that's a lot of barriers as well, especially even the lack of finding a compatible immune system for transplantation. So how can we improve access to stem cell transplantation for minority and underserved populations?

Dr Vivian Hernandez-Trujillo: So as the population in the U S continues to grow in size and diversity, the increased understanding of the effects of available. Of both unrelated donor and cord blood is really needed. So an expansion of cord blood registries with improved funding is, really essential here. And as cord blood units from patients of African ancestry have lower total nucleated cell counts.

We need to keep that in mind. there's an increased inventory of adequately dosed units from racially and ethnically. Diverse populations, which is necessary, especially in cord blood, and then improving access, can be possible by increasing our efforts to educate the minority populations regarding the need to consider participation in bone marrow donor program so that when a donor is needed, there's at least an increased likelihood that you're going to find one that's a better match.

There's also different efforts that can occur, focusing efforts on education and discussion of the ability of donors to help others, address concerns to dispel their fears related to the donation process. Like. The lack of trust of the healthcare system due to negative experiences in the past, for different minority populations, this is really important.

And then the mistrust of the healthcare system has to be addressed in indigenous and black patient populations. Dr. Davis had previously discussed this, you know, the need for staff, cultural competency training, being aware of your own implicit bias. That's really necessary in order to be able to overcome that.

and then having resources available in the patient's primary language, as we've discussed at the appropriate literacy level or available in pictures or through audio or video, some patients may not be able to read at all. So having those available is also necessary.

Dr Gerry Lee: what are some of the resources you would recommend? Not only to learn about the treatment of a primary immune deficiency, but to help patients be encouraged to donate and potentially save a life who have a primary immune deficient.

Dr Vivian Hernandez-Trujillo: There's many resources that are available as we've discussed previously from the immune deficiency foundation, the Jeffrey Modell foundation also has excellent resources and they've done different campaigns at airports to increase, basically diagnosis and just to educate the general public.

and the, I Papi. International patient organization for primary immunodeficiencies has really wonderful resources and these resources are available not only to patients and families, but also to clinicians. if you have access to up-to-date, there's different primary immunodeficiency topics that can aid the clinician and improving the diagnosis and treatment of patients with primary immunodeficiency disorders.

And I highly encourage, all clinicians to access those. If they're are.

Dr Gerry Lee: Dr. Davis, is there any other resources you would recommend

Dr Carla Davis: well, I, as mentioned by Dr. Hernandez, Trujillo, really these great resources are available through the immune deficiency foundation. one that I really liked is the diagnostic and clinical care guidelines for primary deficiency diseases. It's really helpful resource for clinicians. And as was mentioned previously, the patient and family handbook, describes the treatments for our patients.

And that is. Extremely helpful. I would just remind everybody again about the practice parameter for the diagnosis and management of PID disease, as well as the work group report update for the use of email violent and human disease. there's a really great article specifically in up-to-date called primary immunodeficiency overview of management.

and so these would be really great

Dr Gerry Lee: so we'll collect all these resources mentioned on the podcast and we'll post it on our website associated. And again, that website is education dot ACA ai.org/disparate. Once again, I really want to appreciate the time that both our speakers, Dr.

Davis and Dr. Hernandez, Trujillo has spent educating us and raising awareness about healthcare disparities in PID, DS. I think just to end the podcast, I'd love to hear if there's any final words that the listeners should take away after this three part series. Dr. Davis, I wasn't sure if you'd like to start.

Dr Carla Davis: Sure. I think this is a very important topic And one that is relatively novel. And so I believe. If everyone listening has permissioned could move towards equity. That will make a really big difference in the lives of patients with primary immune deficiency disease. So just want to thank everybody for listening and, and applying what we've done.

Dr Gerry Lee: Dr. Nester here, anything you'd like to add?.

Dr Vivian Hernandez-Trujillo: agree with Dr. Davis, I want to thank you first for listening to this series, because I think that's the first thing is recognizing that there is a need. And then as I said before, you know, something that you may even consider a minor, but just trying to communicate with someone.

either in their own language or trying to better understand where they're coming from, what actually improves their outcomes overall. So our immunodeficiency patients are very special. Some of them have diseases that are so rare. you may never see another patient like them again, but they touch your heart.

And I think we can make a difference in their lives. So As Dr. Davis said, thank you for taking the time and just making that effort because we really can make an impact for all of our patients with primary immuno deficiency disorder.

Dr Gerry Lee: You know, I also want to echo that statement. I really appreciate everyone listening in and being motivated to help patients with these very rare but curable disorders and to make sure everyone has access to the best possible outcome in treatment of their primary immunodeficient.

So this will conclude part three of our three part series on moving toward equity, disparities, and primary immune deficiencies from the ACA AI for more resources about PIDD.

Again, that website is education dot ACA ai.org/disparities. And. Interesting episodes from algae talk, please visit us@college.ac ai.org/lg talk and to receive CME credit. Visit education.ac.org/allergy. Talk again. This is Dr. Jerry Lee. I'm from the American college of allergy asthma and immunology. Thank you so much for your time and enjoy the rest of your day.