Early diagnosis and access to orphan treatments, key points of the 2nd CEPCAL Congress
Around 50 million people in Latin America and the Caribbean have a rare or infrequent disease
The current challenge to serve this broad community of patients is to accelerate molecular diagnosis and facilitate access to orphan treatments.
These were the challenges that were addressed during the 2nd Ibero-American Congress on Rare and Uncommon Diseases in the Caribbean and Latin America, organized by CEPCAL in Mexico City, from October 16 to 18.
Patients, organizations, health professionals, institutions, legislators and research centers from Latin America and Central America attended the meeting to converge on solutions that improve the health of these people and guarantee equitable access to decent health care.
“It is important that we can become spokespersons to make the invisible visible, the road is long, but with the will of all interest groups we can achieve it”, said Mary Wang of Rare Disease International of the World Health Organization (WHO), who recalled the importance of the 5 A's for orphan treatments: Availability, Affordability, Accessibility, Acceptability, and Awareness.
Technology and legislation as allies
During the Congress, it was clear that patients and caregivers benefit from incorporating technology and digital ecosystems to shorten the odyssey that, in many cases, involves living with a rare or infrequent disease.
With this approach, Andrea Gonzales, representing the Lovexair Foundation, presented the HappyAir Digital Ecosystem and the results obtained by the support program for patients with Cystic Fibrosis in LATAM, mostly from Mexico, Colombia, Ecuador and Peru. After six months of clinical, social and educational monitoring, the program confirms improved adherence to treatment, an increase in physical activity, a decrease in symptoms such as dyspnea and an improvement in quality of life.
Support at the legislative level is another key to ensuring that care for these patient communities can advance along the path of early diagnosis and access to treatments. In this sense, at the Lovexair Foundation we hope that the discussions generated at these types of events will speed up the legislative processes for drug approval, neonatal screening and comprehensive monitoring that provide solutions to the needs of patients, caregivers and their environments.
Analyzing the community
Some industry representatives and organizations presented reports with updated statistics that allow for a more precise contextualization of the situation of rare diseases in these regions.
One of them was the Latin American Federation of the Pharmaceutical Industry (FIFARMA), which presented the second version of the WAIT Indicator report, which measures access times to innovative medicines in LATAM.
Also Mexican Network of Rare Diseases (REMEXER) presented the survey for which participation is being sought with the aim of analyzing the prevalence and diagnostic needs of patients with rare diseases in Mexico.
On the second day of the congress, the Forum of Patient Organizations focused its debate on future challenges and possible ways to address them jointly within the framework of CEPCAL.
Conclusions of the Taskforce Lovexair digital
The Lovexair Foundation was represented by members of our digital taskforce in Mexico, all of them Lovexair ambassadors:
Joshua David Marquez, an engineer and nutrition consultant and leader of a Cystic Fibrosis patient group, stressed the importance of placing all patients, and especially the CF community, in the focus of the industry in order to get closer to a real cure for rare diseases. The key, he said, is to face the challenges for these communities by working together from all organizations.
To Adriana castro, president and founder of the CF Foundation Un Respiro por la Vida and mother of a young woman with CF, the Congress was “a space for learning, support and teaching where health experts, patients and caregivers were able to share valuable experiences and knowledge to improve their health. For us it was a life hope knowing that science and medical advances evolve day by day.”
Israel Gutierrez, a patient with Pulmonary Arterial Hypertension, COPD, pointed out the importance of a Congress like this in “allowing the meeting of multiple organizations and “creating work groups to continue working for the patient community.”
To Patricia Paz, president of the Respira e Inspira AC Foundation in Merida (Yucatan, Mexico), the Congress was a unique opportunity to meet the different Foundations that are working in this field, to learn about the work that each one does and to open avenues of collaboration between us with the objective of “being the voice of many people. Because together we are stronger.”
also participated Jennifer McDonald, rare disease advocate, international speaker, life coach, CoChair and member of the executive committee of CEPCAL.
Thanks
From the Lovexair Foundation we would like to send our thanks to Dr. Claudia Gonzaga-Jauregui, director of CEPCAL and REMEXER, for the great organization of this event and to the institutions that were present: the National Autonomous University of Mexico (UNAM), the Mexican Association of Human Genetics, P, Zebras Mexico Woman Mexico, Farmaindustria, the Mexican Association of Pharmaceutical Research Industries, AC (AMIIF), and molecular testing companies such as Illumina.
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