In this video blog, we will talk with José Gómez-Puerta, head of the Rheumatology Service at the Hospital Clinic de Barcelona, associate professor at the University of Barcelona and master's degree in Public Health from the Harvard School of Public Health, about the research carried out in Latin America on lupus by the GLADEL group and the key messages for patients and families, as well as existing relationships with covid-19.
"Lupus is a treatable, controllable disease, where every day better treatment and better markers are being developed for its diagnosis and control. Consult a specialist for any warning sign or symptom out of the ordinary," he says.
Estefanía Fajardo (EF): Hello everyone watching today this new Global Rheumatology videoblog. We are with Dr. José Gómez-Puerta, head of the Rheumatology Service at the Hospital Clínic de Barcelona, associate professor at the University of Barcelona, and master’s in public health at the Harvard School of Public Health. Today we will talk about lupus and a bit about the current issue, the pandemic.
Gómez-Puerta (GP) : Hello, Estefanía. Greetings to you and the entire PANLAR Global Rheumatology community.
EF: Doctor, for a patient who has just been diagnosed with lupus, what is important for them to know and understand in this process?
GP: I think it is important to know that it is a heterogeneous pathology. It is probably a systemic autoimmune disease with more faces, with more facets, and that it will depend a lot on the moment of the disease, the sex, the race and it is evident that in this long road that can be an inflammatory pathology, that there will be difficult moments of outbreaks and activity of the disease, but that there will also be moments of control of the disease and that there will be moments of stability, and that it is important for the patient to know that he/she will be able to control the disease and that he/she will have a better understanding of the disease, better stability, and practically normal life as if the pathology did not exist.
EF: One of your studies points out that the variation in mortality according to race, ethnicity, lupus has not been properly studied. What can we talk about the subject and the incidence?
GP: Yes, the racial and ethnic issue confers a pattern that differentiates the disease, not only in mortality, but also in the way it manifests itself, in the inflammatory burden of the disease and, obviously, in having a higher risk of death or serious outcomes such as end-stage chronic kidney disease.
When you ask me about incidence, lupus is an infrequent disease, but not rare. It is a disease that, depending on the race, presents 1 to 25 new cases per 100,000 inhabitants and, fundamentally, it is more prevalent in blacks, African Americans, Asians and in mixed races, so it is an infrequent disease, but it does affect certain races more prevalently.
From this point on, mortality studies are not easy to carry out; large cohorts are needed, cohorts of insurance company registries. I had the opportunity to do this in the United States with Medicare or with the registry of patients with end-stage chronic kidney disease, or as colleagues have also done with the same GLADEL cohort, or EUROLUPUS, which have made large population registries of hundreds and thousands of patients where the prognosis and outcomes of the disease can be seen.
EF: Several of your works have been carried out precisely with GLADEL, how do you work, what research have you developed, and which ones are currently in progress?
GP: GLADEL is a community of friends who are experts in lupus. I am a newcomer here because it is a group that was established in 1997 with Bernardo Pons-Estel, Dr. Alarcón Segovia, Mario Cardiel, Luis Catoggio, and a series of Latin American experts who have done a great deal of work and made very important contributions to the study of lupus and to rheumatology in general. From there, GLADEL has generated several population studies showing profiles of the disease, showing benefits of treatments such as the disease, showing the benefits of treatments such as antimalarials and generating, let us say, new projects.
In this sense, about three, four, five years ago, Bernardo Pons-Estel, Guillermo Pons-Estel, Mario Cardiel, Maricarmen Amigo, Leonor Barile, etcetera, we got together to generate a new cohort, what was called GLADEL 2. 0, which is a court of new rheumatologists, many of them experts and trained in places of excellence throughout Latin America, to take the bar, this high bar that had been left or maintained by the experts and original founders of this project. Therefore we generated a biomarker project, biomarkers in lupus also Pan-American, which includes more than 40 centers and in this particular case, we have a project underway to look at biomarkers in blood and urine fundamentally to determine if there are differences in subgroups, patients who have, for example, lupus nephritis at the base, or if they have active lupus nephritis and also to compare with a control group of Latin American population, some autoantibodies and other markers of autoimmunity. So, it is a large project, a project that includes many participating centers and researchers, and fortunately, despite the pandemic, we have been collecting many samples and patients and we are very satisfied, at least for the moment at the point where we are.
EF: Doctor, clinical practice guidelines, and recommendations were also generated. Let us talk a little about this topic.
GP: This is also another, I believe, of GLADEL's important contributions. Once the meetings were held in PANLAR, in Panama or the American College of Rheumatology Congress, they were implemented, let us say by means of working groups, we were 13 working groups in different areas or topics of the disease, renal involvement, lupus, pediatric skin involvement, neuropsychiatric, pregnancy, etc., and we succeeded in following a very rigorous methodology, the review of the literature, in order to find what was, according to the evidence, the best recommendations for the treatment of lupus, but without forgetting the region where these recommendations are being implemented.
This took a series of meetings and extensive review of the literature, reaching a consensus of experts and finally the guidelines have been published in the journals with the greatest impact in the specialty, in Rheumatology, and I believe that they have been gradually increasing in the different countries and I believe that it is a source of great pride for their coordinators, such as Dr. Mario Cardiel, Bernardo Pons-Estel, and for all of us who were able to participate, that these guidelines have reached where they have reached and have the dissemination that they have.
EF: What have been the main findings of this pathology, of lupus in recent years?
GP: Estefania, I was telling you about the identification of risk factors, prognostic factors, why a patient may have more involvement of one organ or another, or why race or sex gives a different profile of the disease. Then, to see how certain drugs can modify the course of the disease and, I believe that, fortunately, in lupus, over the last ten years, and over the last few years, not only have targeted drugs been approved specifically to treat lupus patients, but two or three drugs have been generated in the last few years that will surely also be approved for use in lupus manifestations. and for use in severe manifestations such as lupus nephritis. So, the message after several years, let us say, of walking in the desert. the patients are better profiled, there are better biomarkers, many factors are obviously still unknown, but there are two or three new drugs available for lupus nephritis, which means that we are at a moment of optimism for this disease.
EF: Doctor, you have also addressed familial lupus. What studies have been done on it and what findings have been given?
GP: I had the opportunity to participate in a study. It is not really my area of expertise, but I did participate, for example, in the GLADEL study that Dr. Quintana, in Rosario interestingly it was found that about 5 - 6 % of the overall GLADEL cohort had familial lupus and not lupus, what we would call sporadic or non-familial lupus. This is not a new phenomenon in autoimmunity, it is not uncommon for our patients to have other first-degree familial autoimmune diseases such as rheumatoid arthritis, thyroiditis, Sjogren's, celiac disease, etcetera, and certain families have aggregation and as cases of familial lupus, between twins or siblings, etcetera.
These studies are difficult to do, we were not going to look for markers. There are many populations where there is a lot of inbreeding, the Middle East and some primary indigenous populations, where familial lupus is more frequent and can be 10 - 15 %, but particularly in Latin America, or at least in the GLADEL cohort, it was around 5 to 6 % we found fundamentally that it had more cutaneous involvement, it had more neurological involvement and more neurological involvement and some other manifestation, let us say systemic, more frequently than patients with sporadic lupus.
EF: Bearing in mind that we are also in a covid-19 pandemic, has any correlation been found between this disease and lupus?
GP: Not particularly between lupus and Covid. There are some reports that Covid generates some autoimmune phenomena, such as the case of a picture that simulates a vasculitis in children known as Kawasaki disease, this has been reported quite a lot. Autoimmune thrombocytopenia, induced or triggered by Covid, pictures that simulate Guillain-Barré, pictures of autoimmune thyroiditis, not well-differentiated arthritis, but lupus as such, at least, is what I have reviewed, is not a pathology that is closely associated with Covid infection.
EF: Moving on to a slightly more emotional level, what is the approach to a patient with lupus, and if at this time we are seen by family members, what support should be given to this family member?
GP: I think the first thing is a message of reassurance and optimism. We have many very good tools for the control and diagnosis of this disease, a message of confidence in the rheumatologist, the specialist who will control this patient, and I say this female patient because it is known that nine out of ten patients suffering from lupus are women.
Also a message of self-care to patients, especially young patients, that it is important to be part of this treatment strategy, to use sunscreen, to be adherent to treatment, to make controls, not to smoke, to have a balanced diet, an important thing is to avoid miracle treatments or treatments not recommended and consolidated for the treatment of lupus, all these curative therapies that are often offered without much scientific rigor should be avoided, and it is clear that before any symptom or alarm of a serious outbreak of the disease, it is always important to go to the doctor and not to self-medicate.
But messages of optimism, we have better tools for diagnosis and more and better tools for treatment.
EF: And without leaving aside the current situation of the pandemic, how do you see the approach of the continents in this regard and your experience as a physician in Spain?
GP: This pandemic has been a very important challenge for the clinician and for the patient. It is not in vain that we were forced to close hospital wards, to close our day hospitals, to close outpatient clinics, we actively participate in Covid circuits or devices.
We, rheumatologists, had already mastered or knew much of the therapy given for Covid, such as immunosuppressants, tocilizumab, baricitinib, and colchicine, corticosteroids, so it was not a foreign field, but Covid meant important stress and workload. And also for patient, they are patients who could not do the therapies they were doing or the usual controls, some intravenous therapies were suspended, some intravenous treatments were changed to sub venous, some intravenous treatments were changed to subcutaneous because of the incapacity or, at least in the Hospital Clinic, they were changed from intravenous to subcutaneous treatment, and also, obviously, the fear of the risk involved in having a disease such as lupus or rheumatoid arthritis and contracting the virus. And, finally, and this is a more recent issue, the risk-benefit that a patient who wants to be vaccinated for Covid and has an autoimmune disease or immunosuppressive treatment may be assuming.
With all this, it has been a difficult year, but I believe that more and more there are data that support the fact that in general patients with autoimmune disease are not doing worse, except for a couple of treatments that require more care and that vaccines, in general terms, are safe and effective in the general population and in patients with autoimmune diseases.
EF: Doctor, you have experience in England, Barcelona, Boston, and you have worked in Colombia, what is your vision and what do you consider to be the strengths and weaknesses considering these different countries where you have been?
GP: I think I have been fortunate to be in leading lupus groups, in the Lupus Unit in London, here in the Autoimmune Diseases Unit and the Rheumatology Service, in Boston at the Brigham Hospital and at the University of Antioquia and the San Vicente Hospital in Medellin.
I would say that globally they are people who have great expertise and capacity to treat patients with lupus, I think that an important message is that perhaps the great limitation that patients with lupus have is the lack of access to a good health system with certain medications and that is perhaps what has the greatest impact on the prognosis. This happens in the United States as well as throughout Latin America.
As a message of tranquility from PANLAR I could tell you that the level of knowledge and expertise in the specialty of Rheumatology is very good throughout Latin America, we have experts of a high academic, professional and personal level, and unfortunately, not all countries and centers have good access to the health system, maybe that is the message as scientific societies and as patient societies that we have to make to our leaders, patients need good, close care, they need therapies that many times can have a high cost, but that in the long run, let's say, will have an impact on the health of the patients.
But we certainly have the human talent in Latin America, and we have the knowledge to offer the best to the people.
EF: You mentioned one word and a message. Let us end with a message for patients and for your colleagues in the context of what we have been talking about during these minutes.
GP: The message is one of optimism. Lupus is a treatable, controllable disease, where better treatments and better markers are being developed every day for its diagnosis and control, and it is very important that they trust their rheumatologist, that they get another chart and take their medication, and that at any sign of alarm or unusual symptom they consult a specialist. There are multiple units of experts throughout Latin America and from PANLAR and GLADEL we are committed to continue doing research projects, to continue doing training sessions for patients with a platform called Let us talk about lupus and surely there will be very good years ahead, not only in terms of knowledge generation but also in the active participation of patients in shared decisions and that enrichment and empowerment of their pathology in each of the patients.
This is important, a bit of a paradigm shift and the empowerment of the patient to his or her disease, and we are sure that from the patient associations, from GLADEL, and from PANLAR we will achieve it.
EF: Doctor, thank you very much for these minutes and for explaining to us all these topics of your research and the work you have been doing for so many years.
GP: Thank you, Estefania, and it has been a pleasure.