Rare Diseases in Latin America: Challenges and opportunities for the equitable attention and proposal of Patients Organizations

On 15-17 September 2017, Migdalia Denis, IAPO board member and president and founder of Pulmonary Hypertension Latin Society, took part in the ISPOR 6th Latin America Conference, in São Paulo​, Brazil. In the time leading up to the conference, Migdalia and Angela Chaves, president and founding member of the Colombian Federation of Rare Diseases wrote an article for the ISPOR Latin American Consortium E-Newsletter special volume. They addressed the challenges and opportunities for the equitable attention of rare diseases in Latin America from a patient point of view.

Patients with rare diseases in Latin America are faced with the following challenges: lack of information, scarce discussion with the general population and decision makers about symptoms, complications, and possible cures for rare disease, and the deficient legal and regulatory marks which generate a lack of coverage in the Latin American health systems. This lack of coverage, in turn, exerts an enormous impact, producing serious deficiencies in the population access to adequate treatments and protection, violating so the patients’ human rights.

From the article, both Denis and Chaves conclude that in all domains and due to the minority characteristics of the rare disease population and its number of vulnerabilities, the measures taken require two fundamental principles: differential focus and integral recognition from the population. Amidst this focus, patient organizations play a crucial role in the recognition and provision of social solutions in Latin America.

Read the full article here.