Pulmonary Hypertension, a rarely seen but treatable lethal disease

Pulmonary hypertension (PH) is poorly understood and is often confused with other respiratory or cardiac diseases. This delays its identification and worsens the prognosis for those who suffer from it, in addition to the limited availability of specialists, innovative therapies, and comprehensive care centers.

This was highlighted by civil society organizations in a webinar on the topic, where patients and their families issued a call to action, within the framework of World and National Day for the Fight Against Pulmonary Hypertension, commemorated every May 5, as an effort to raise awareness of the reality of those living with PH.

Paula Cabral, president of the Mexican Pulmonary Hypertension Association (HAP México), noted that in Mexico, "we have learned the vital need to have a patient-centered support network to cope with the disease and guide them step by step on their long journey."

PH is a progressive, chronic, and potentially fatal disease characterized by an abnormal increase in pressure in the pulmonary arteries, which directly impacts the heart and lungs and can lead to heart failure and, in many cases, death, explained Dr. Nayeli Zayas Hernández, head of the Department of Cardiopulmonology at the Ignacio Chávez National Institute of Cardiology.

It can affect people of any age, race, or gender, although it is twice as common in women and most frequently occurs between the ages of 20 and 40. It can be related to autoimmune or congenital diseases, infections such as HIV, or even certain medications, he explained.

Patients participating in the session discussed how the physical barriers faced by the disease are intertwined with the emotional, social, and economic impact. HP, which affects people of all ages, leads to missed work, high treatment costs, and an emotional burden that also affects caregivers. Many patients report social isolation, anxiety, and depression.

"Hence the importance of comprehensive care, because although significant progress has been made in addressing this issue in recent years, significant gaps persist that limit access to timely, equitable, and patient-centered care," said Patricia Paz, a patient who has managed to improve her quality of life thanks to receiving her treatment on time.

More than 25 million people worldwide live with PH, and at least 4,000 people in Mexico are living with this condition. The global prevalence ranges between 15 and 50 cases per million inhabitants, although it is believed to be underdiagnosed. Without treatment, the average patient survival rate can be as low as 2.8 years after diagnosis. Conversely, by receiving appropriate and effective treatment, patients dramatically improve their quality of life and extend their survival.

Karla Navarrete Galvez, who lives with PH, asserts that listening to patients' voices is essential to transforming the approach to pulmonary hypertension. "It's not just a disease, but rather a life that changes completely after diagnosis, as we face severe physical limitations such as dyspnea, fatigue, and chest pain, which impair our autonomy and participation in daily life."

Fortunately, important strides are being made in Mexico thanks to the growing participation of patient organizations that promote awareness, visibility, and the defense of rights, as well as innovation in medications that allow for more effective and personalized therapies. "These achievements represent a solid foundation for continuing to advance toward more comprehensive, equitable, and person-centered care, consolidating comprehensive and multidisciplinary care models throughout the country," says Dr. Zayas Hernández.

Finally, the panel called on authorities, health professionals, and civil society to promote the mandatory and effective implementation of the Technical Protocol for Pulmonary Arterial Hypertension and Chronic Thromboembolic Pulmonary Hypertension (CPTEPH), published by the General Health Council. "This document establishes clear guidelines for comprehensive and timely treatment of the disease, in accordance with international standards," said Paula Cabral of HAP Mexico. This effort was one of the main initiatives promoted jointly with Senator Emmanuel Reyes Carmona, who led the Legislative Forum on Awareness on Pulmonary Arterial Hypertension. He, along with a panel of experts, urged the Ministry of Health to instruct institutions throughout the health sector to adopt the parameters of the Technical Protocol.

Dr. Zayas emphasized that implementing this protocol within healthcare institutions will improve access to early diagnosis and comprehensive treatment. This approach includes innovations in medications that offer more effective and personalized therapies, as well as strengthening support networks and specialized care centers.

"It's critical that patients and caregivers be actively included in health-related decisions, because pulmonary hypertension doesn't wait. Early diagnosis and appropriate treatment can mean the difference between life and death."