The country faces a complex panorama in the care of people with rare diseases, with diagnosis times between five and 30 years and limited access to therapiesaccording to the main findings presented during the Raremed 2025 Congress, organized by the Colombian Federation of Rare Diseases (Fecoer).
In Colombiaabout 2.5 million people live with a rare condition and, according to the speakers, the health system has not been able to adequately respond to its clinical, financial and regulatory needs.
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Diego Gil, executive director of Fecoer, stated that it was “the first version held in the country of a congress focused on rare diseases,” and warned that “in 2025, more patients die every month than in the last seven years.” He added that the meeting was “an urgent call to guarantee effective and timely access to care” and a starting point to review the conditions of the health system for this population.
The participants highlighted that Only 10% of rare diseases have a therapeutic offer and they warned about recurrent interruptions in treatments, failures in care coordination and extensive administrative procedures. Lizbeth Acuña, executive director of the High Cost Account, pointed out that these conditions are “invisible and unknown,” which generates fragmented care and forces patients to go through multiple providers, with a high risk of suspension of therapies and irreversible effects.
One of the central topics of the meeting was pharmaceutical regulation and the evaluation times of new technologies. In 2024, The average approval time for new molecules was 2.3 years and in 2025 it increased to 2.6 years.
(Read more: Financial deterioration of the health system reaches $4.2 billion in pharmaceutical portfolio)
The average diagnosis time can take between 5 and 30 years.
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Only 40% of the medications were authorized, despite having international endorsement. Alejandro Botero, director of the Andi Chamber of the Pharmaceutical Industry, stated that Invima faces more than 14,000 pending procedures and maintained that the entity should focus on reviewing “safety, effectiveness and quality” without getting involved in issues related to the cost of the technologies.
Regarding the role of innovation, Ignacio Gaitán, president of Afidro, stated that “It is essential to update regulatory matters, make innovation a central axis of public policies and rebuild trust among the actors in the system.”, pointing out that only joint work will allow us to generate effective responses for patients.
In terms of regulations, the speakers recalled advances such as Law 1392 of 2010, which recognized specific rights for this population for the first time. However, according to Karen Narváez, legal advisor at Fecoer, “Administrative and financial barriers persist, as well as the lack of implementation and political will necessary to guarantee the rights of this population.”.
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The system’s financial deficit amounts to $30 billion, according to experts.
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Financing was another area of discussion. Experts pointed out that The sectoral deficit amounts to $30 billion, derived from the calculation of the UPC and the Maximum Budgets and the non-compliance with judicial rulingswhich has affected the provider network and increased out-of-pocket expenses. Diana Cárdenas, former director of Adres, indicated that resources must be understood as a shared responsibility of the entire society.
As a prelude to the Congress, Americas Health Foundation, together with regional organizations, convened the forum “Impact of the Rare Diseases Resolution of the World Health Assembly in Latin AmericaThere it was estimated that more than 40 million people live with these pathologies in the region.
Durhane Wong-Rieger, president of the Canadian Organization for Rare Diseases, said: The resolution constitutes a milestone in recognizing these conditions as a public health prioritybut emphasized the need for cooperation between governments and patient organizations and overcoming national barriers to advance access, diagnosis and treatments.
(See: Shock over mortality figures from orphan diseases)
DIANA K. RODRÍGUEZ T.
Portfolio Journalist
