Doctors, patients and families have demanded this Thursday that a uniform type 1 diabetes screening programme be set in motion throughout Spanish territory, so that it is applied effectively in all autonomous communities to first-degree relatives of people already diagnosed and, in a second phase, it is progressively expanded to the entire paediatric population.
At present, "we arrive very late" to diagnosis, which means that many times it is produced "with diabetic ketoacidosis", a situation that "is not an exceptional case," Ana María Tormos Fons, mother of a girl with this condition, has said. She is responsible for external relations of the Asociación Valenciana de Diabetes (AVD) and spokesperson for the platform "Crecer Sin Diabetes" of the Federación Española de Diabetes (FEDE).
This demand has been raised at a meeting in which healthcare professionals and patient representatives have stressed that around 90% of new cases of type 1 diabetes appear in people without a family history, and have insisted on the need to coordinate detection programmes and guarantee equitable access to screening in all the CCAA.
They have highlighted this during the event "Detectar antes para llegar a tiempo. El valor de anticiparse a la diabetes tipo 1", organised by FEDE and CrecerSinDiabetes, with the support of Sanofi, on the occasion of World Diabetes Day, which is commemorated this Saturday.
The event also included an intervention by the paediatric endocrinologist at Hospital Universitario La Paz de Madrid, Doctor Nerea Itza Martín, who has reminded that, in Spain, the current recommendation is to offer screening to first-degree relatives of people with type 1 diabetes and to those who present other autoimmune diseases or a known genetic risk.
"That is being done at the hospital level and we try to make it visible so that it is done at the level of the entire national territory," she explained, so that "the first objective is to reach all the places so that this is equitable across all of Spain", something for which there is already "evidence". The next step, she added, is "evaluating another type of strategies that encompass more child population", since "it has been seen that is where more seroconversion occurs, where there is more opportunity to detect those antibodies".
For its part, Tormos Fons has emphasized that the diagnosis “involves a very hard blow that destabilizes the entire family” and has reiterated that “in 90 percent of diagnoses there is no family history.” This situation means that many minors debut with hospital admission and, on no few occasions, in the Intensive Care Unit (ICU), while also favoring a type 1 diabetes that is “more unstable, unpredictable” and with “a higher likelihood of future complications.”
Avoid admissions and diabetic ketoacidosis at the onset
For this reason, he has stressed that “a situation like this can be avoided” in the 1,400 minors under 15 years old who are diagnosed each year in Spain. “I would have loved to get there sooner to have that margin to learn calmly and not with slaps and entering dangerous situations,” she has recounted, acknowledging that the start of the disease is experienced with “very strong tension.”
With a view to preventing this experience for other families, she has insisted that “the main thing is that what is already recommended starts to be done” and has denounced the existence of “inequity” because “it is not done in all places.” She has recalled that “it is an autoimmune disease” that entails “severity” if it is diagnosed late and has lamented that there is “a lack of information” about “all the advantages that the screening can provide.”
Along the same lines, Itza Martín has said that the objective is “to avoid complications and decompensations,” since every year “700 minors end up in the ICU because they are diagnosed this way.” In response to this, early detection allows “intervention at the educational and therapeutic level to modify the course of the disease,” so she has highlighted the structured and multidisciplinary screening program that is carried out at Hospital Universitario La Paz, which facilitates the generation “very quickly” of appointments and continued follow-up.
As she indicated, “these population screening studies in the pediatric population are needed, which are already starting to be carried out in different parts of Spain, in the Basque Country, Asturias,” as pilot projects, and “to assess and evaluate the real needs and, subsequently, scale up to a pediatric population screening,” although she has stressed the importance of studying well how to implement it.
The same message has been backed by the head of the Clinical Research Unit for Type 1 Diabetes at the Hospital Universitario Ramón y Cajal in Madrid and principal investigator of the Diabetes and Human Reproduction Research Group at IRYCIS & Universidad de Alcalá, integrated into the Centro de Investigación Biomédica en Red de Diabetes y Enfermedades Metabólicas Asociadas (CIBERDEM), Dr. Lía Nattero Chávez, who has stressed that early detection “changes everything” also “from the care point of view”.
Benefits of early diagnosis and need for coordination
As she has explained, most diagnoses are carried out today “in an Emergency context and hospital services,” which implies “a psychological trauma” for the patient and their environment, whereas, through screening, “metabolic control and much better pancreatic reserve” are achieved. For this reason, she has highlighted that “a very important issue is equity” and, in addition, “being able to offer it effectively and quickly to the largest part of the population”.
Although she has specified that “more than 50 percent of diagnoses in type 1 diabetes occur in people over 35 years of age,” she has highlighted the high “acceptance” of the diagnostic test, something she has verified among the participating families, for whom it represents “a fantastic experience”. However, she has warned that “the complicated part of this is the coordination task that is needed before rolling out a new care pathway,” especially with regard to the link between Pediatrics and adult care.
With regard to the possible extension of screening to the general population, she has argued that it must be done “through pilot research studies that have to be replicated within the autonomous communities,” with the aim of “reaching patients efficiently.” “We have to adapt the care system for this new vision” and “incorporate these care pathways and these strategies that serve to improve prognosis,” she said.
Lastly, the FEDE Board member, María José Salmerón, has highlighted the “very important” role of patient associations and has cited as an example the entity to which she belongs, which has been working for two years so that early detection becomes “a health priority.” Her purpose is “that the autonomous communities, the hospitals that still do not have those screenings on their portfolio, include them, and that progress is made until we reach that those screenings are carried out for the population.”
The final goal is “for everyone to have access to early diagnosis, regardless of postcode,” she stressed, recalling that this claim has the backing of the scientific societies. In addition, she has emphasized that there is a phase after diagnosis in which FEDE offers “emotional support,” as well as ongoing support and guidance to families.