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Lovexair at the 11th ALAT 2018 Congress

The Lovexair Foundation was invited to participate in ALAT 2018 to share experiences in the field of Respiratory Health

The Lovexair Foundation addressed the importance of preventing respiratory diseases at the 11th ALAT Congress

 

Mexico City hosted last June from 27 to 30 of 2018 the 11th Edition of the International Congress of the Latin American Thoracic Association 2018 (ALAT).

The association is part of Latin American Forum of Respiratory Societies (FOLASOR) and interacts with the presidents of the national societies of the region; For this reason, priority was given to the development of treatment guidelines and regional research studies, as well as to intensify the relationship with Government policies. The focus has been to consolidate the relationship with other regional international societies and also continue to support the International Forum of Respiratory Societies (FIRS).

Mexico, like other countries in the region, is undergoing important political-social changes but shares the great challenges of our society on a global scale: the health of citizens. The ALAT 2018 Congress was attended by more than 1.500 people from Latin America and other countries, and around 250 teachers participated. A total of 11 postgraduate courses, 70 symposiums and 400 conferences were presented.

In this incomparable setting, the Lovexair Foundation was invited to participate to share experiences in the field of Respiratory Health. Being an active part of the first meeting in Latin America with patients, family members and doctors interested in supporting patients and learning together what is the reality of the chronic respiratory patient affected by asthma, COPD, lung cancer or rare respiratory diseases.   Below is a chronicle of the experiences that the Congress and the people who gathered have given us. Expressing from here our sincere gratitude for the opportunity that has been for us.

 

Specifically, Dr. Agustín Acuña, chief pulmonologist at the La Trinidad Teaching Medical Center, Venezuela, gave a session on lung health and respiratory techniques and active life for patients affected by respiratory diseases in a playful and participatory manner. Dr. Acuña has worked with high-level athletes with asthma who practically overcome the obstacles derived from their disease and thus live a fulfilling life project. In this regard, we fully agree with his vision and values.

We participated together with Carlos Cambón from Fundación Alfa-1 Argentina in the workshop giving a brief testimony about our experience and perspective as a mother and patient of someone affected by Alfa-1. It is key to highlight that early diagnosis is essential for these patients and that it represents a challenge in Argentina and Brazil, with 67 patients in Argentina and 88 in Brazil, respectively (Source). Cambon is supporting patients in Argentina and trying to improve their access to replacement treatment for those patients who meet the conditions of age and respiratory function, according to the guidelines that ALAT is developing.

At the Foundation we understand that it is important to pay special attention to this reality, since patients and their families live in a more complex situation than patients in Europe, due to the difficulty in accessing basic medicines and oxygen therapy. The average costs per person per medication are very high, which is why many times they stop taking it, resigning themselves to trying to treat the disease without treatment. This fact is the most problematic aspect in Latin American countries where health costs are, in many cases, unaffordable due to the low average income of the vast majority of the population. Therefore, there is a large market for generic or alternative treatments that are of dubious benefit to the patient and cause confusion and lack of confidence. This complex situation causes a lack of adherence on the part of the patient due to the aforementioned economic burden and the confidence in their apparent good health and the no need for treatment.

The same problem exists with the stigma of being a smoker, a fact that inhibits the patient from seeking resources to quit smoking or the way to face his diagnosis and accept that he has a disease, either out of guilt or fear of losing his job. Said factors that cause COPD and the impact of pollution or occupational exposure to harmful substances, for example, burning wood, which has a very aggravating effect. Highlighting as in Mexico City the altitude of 2.600 m. of the city and the traffic jams impede the daily movement of people, especially those affected by respiratory illnesses.

 

The Foundation was very well received by the participants and especially by the patients. We connected with very positive people with a high sense of solidarity who showed great interest in the idea of ​​belonging to the Happyair community and working together to address and solve the difficulties we face. In this sense, the help that we can provide from Spain can be very important, since we share the commitment to our health beyond borders or economic, social or geographical differences.

 

Dr. Alejandra Ramírez has a respiratory R&D clinic (Centro Respiratorio México) and we were able to see it first-hand during our trip, being a key place to support patients in better managing their disease with an interdisciplinary team and with patient participation in Clinical studies.

We also had the opportunity to meet Ricardo Ramírez, Executive Director of AFAMELA (Association of Manufacturers of Free Access Medicines), with whom we explored possible lines of collaboration for self-care and the reduction of medical expenses in patients, and Mrs. Xochitl Morales Mendoza from OMER (Mexican Organization for Rare Diseases) with the aim of identifying collaborative events and initiatives in Mexico, through our network of experts, inviting us to become part of ALIBER (Ibero-American Alliance for Rare Diseases).

Along with the networking and alliance activities, we presented the resources of the Happyair digital platform and comprehensive care plan to Congress attendees and different interest groups, doctors and patient associations. We were able to verify the enormous interest in the possibility offered by accompanying the patient in programs with educators implementing proven and reliable resources in digital health, thus helping to overcome the difficulties in Latin America, both in large cities or in dispersed rural populations, especially those people with difficulties in access to affordable resources in health and education.

Lovexair has the clear intention of consolidating and trying to extend its network focused on providing solutions to patients and their families, always sharing the same vision and mission: to be supportive of the patient and their families, offering support to healthcare professionals. We are convinced that high-quality digital health resources and training can improve the quality of life and empower people in their health care.

For this reason, we urge the Spanish Society to understand what it means to live with a chronic respiratory disease and to support us in our commitment. Being in solidarity with our community and making the challenge of comprehensive care a reality, especially contributing so that other people with fewer resources can benefit regardless of where they live.

The Foundation acts where there is need and we know with Latin America that it needs it. For this we request support in fundraising, funds that have the clear objective of reducing the impact on the lives of people with chronic respiratory diseases, wherever they live, respecting equality, the basic rights of citizenship thanks to the generosity that each person deems appropriate.

Change is possible and you are part of it.

Thank you ALAT for making us part of the challenge.