For the first time, Mexico commemorates this May 5 the National Day for the Fight against Pulmonary Hypertension (PAH). Having a day will allow, year after year, to make visible the needs and challenges faced by people who live with this condition.
Although World Hypertension Day has been celebrated for a long time, due to the first case diagnosed in Spain in the mid-1980s, the day was resumed to make it national. The idea is to raise awareness, draw the attention of citizens, which is why it is intended as the first public act, to illuminate the buildings in purple, as it is the distinctive color.
In an interview for The Economist, Paula Cabralspokeswoman for the Mexican Association of Pulmonary Hypertensionshare details about this so-called success story.
“When you receive a diagnosis, it hardly impacts you because we do not measure what is coming, what can happen, a next step is that the patient begins his search on the Internet, that is where the problem begins because there is outdated information, where it is ensured that the prognosis of life it is a maximum of 4 years if there is no treatment, the next step was unknown.”
That is why the visibility of the disease was necessary. “There are about six years of work behind, in the face of a condition totally unknown by the majority of the population, since only 3% of people not involved know about it, this work was necessary. After several refusals, she was promoted in this legislature and after the opinion of the Chamber of Senators, we are finally commemorating it. As long as the social and legislative foundations are not laid that this was a problem with urgent attention, it was to continue paying causes, but without any repercussions”.
Paula Cabral, spokesperson for the Mexican Association of Pulmonary Hypertension. Photo: Courtesy.
A new technical care protocol
This commemoration is also accompanied by specific events to improve care. At the beginning of 2022, the PAH Care Protocol by the General Health Council (CSG).
Paula explains that when a person is affected by the disease, the whole family is also affected because the care becomes permanent, since breath can be lost even when bathing without adequate treatment, “this becomes a family problem” . To this we must add that the health system did not contemplate more than the single therapy of 25 years ago and in a generic way. “The advances for Mexican patients were very relative, although the technology existed, it did not reach the patients, they could not improve, but now there is an abysmal change.”
The representative of the Association assured that it is excellent news as long as the protocol is applied as it should be, “this is a document that was updated, it was a job by the doctors with recognition of the patients, the General Health Council authorized and published it, from that moment it is mandatory to apply it”.
For now, the document only has an impact on the 14 hospitals coordinated by the Coordinating Commission of National Institutes of Health and High Specialty Hospitals (INSHAE), that is, affiliated with popular insurance, Insabi, and now IMSS welfare. “But if this document is not heeded, shared and accepted by the hospitals, the patient will not improve much because the doctor, who is the last link in the chain, is the one who should be aware. That is why we are giving ourselves the task that the Institutes know it and understand its application, so that it is not a dead letter and the benefits reach those who should”.
Paula reflects: “When we started we said, we are doing this for the patients who left without any option, for those who are here now and deserve attention, but also for those who are coming, because we hope they find less bleak scenarios than those of now”.
What is pulmonary hypertension?
The doctor Thomas Pulidodeputy director of Clinical Research of the National Institute of Cardiology Ignacio Chávezwas one of the main people involved in all this task, he says that if we had had this interview about 15 years ago, the answers were devastating, without much to do for patients.
“We gave them symptomatic medications, but now there are medications for their care, doctors interested in the disease and this has allowed the patient to have quality of life, since it is incurable, our aspiration is to control it. I have patients who have carried out research protocols for 10 years and have a very good quality of life”.
About the disease, he explains that it is a group of diseases that are characterized by increased pressure in the arteries, which leave the right ventricle and go to the lungs; it is a progressive disease, and if left untreated, people will die of heart failure. “When we talk about the day of the Pulmonary hypertension we refer to group 1 and 4 (chronic thromboembolism), which is the clinical classification, because there are already specific medications for these two conditions.”
The specialist reveals that these diseases in the past were difficult to treat because they were considered rare or infrequent and the problem is that they share symptoms with many heart and lung diseases. One of the main symptoms is shortness of breath, which many people have, which does not allow us an easy diagnosis. “That is why part of the process is trying to make people and doctors aware that this exists and that it can be treated, the main specialists are cardiologists, pulmonologists and rheumatologists”.
Dr. Tomás Pulido, deputy director of Clinical Research at the Ignacio Chávez National Institute of Cardiology. Photo: Courtesy.
It also coexists with fainting or syncope, edema or swelling of the legs, abdomen; symptoms practically indistinguishable from other diseases, here what is important and what sets the tone are the risk factors, for example, patients with congenital heart disease, use of drugs such as cocaine, genetic background and autoimmune diseases, especially scleroderma, it is about ruling out .
Pulido assures that it has been the work of many years and people, this is how he shares a personal reflection with us: “My goal, hopefully it touches me, is to see the cure for the disease, but with the sole fact of being able to tell a patient ´there is something to do´, I believe that the work is on its way. I remember a patient who told me ´doctor, thank you, because with this medication I can now carry my baby´, those are words that encourage; I also know the other side of the coin, patients who unfortunately die and you get frustrated, but as long as we can do something for patients and see all this evolution with patients improving, I wouldn’t change it for anything”. The next goal, he said, is to find all those patients that are out there, because in the official registry there are only 1,000 patients, but we believe there are at least 5,000.