Shock over mortality figures from orphan diseases

The Colombian Federation of Rare Diseases (Fecoer) presented an analysis that questions the figures released by the Ministry of Health on mortality in people with rare diseases in the country.

According to the official records of the Integrated Social Protection Information System (Sispro), Between January and August 2025, 1,501 deaths were reported in this population, with a monthly average of 188 deaths and a critical peak in August of 239 cases..

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According to Fecoer, this trend reveals an excess of mortality that the Government has not recognized. “Our calculations show a sustained deviation from historical behavior between 2018 and 2024. In several months of 2025 the records even exceed the upper limit of variability of the previous series”, indicated the organization.

The analysis, based on public information from Sispro before access was restricted, applied an endemic channel to distinguish normal fluctuations from epidemiological alerts. “The evidence suggests a crisis of access and continuity in treatments, rather than a change in the severity of the diseases”Fecoer noted.

The Ministry of Health had stated on October 9 that there was no relevant increase in deaths, based on a comparison of January–September 2024 versus the same period in 2025.

However, the Federation considers that this reading is insufficient. “An aggregate year-over-year decline can obscure critical monthly peaks like the one in August. Epidemiological surveillance requires analyzing the monthly series and not only the annual accumulated ones.s,” added the organization.

Fecoer stressed that his analysis does not infer individual causality, but notes temporal coincidences between the excess of deaths and the documented interruption of therapies, shortages and administrative delays. In that sense, called for an urgent response to restore continuity of care.

The critical peak in August 2025 reached 239 deaths, exceeding the upper limit of the 2018–2024 historical behavior.

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Concentration by EPS and complaints

In the breakdown by insurers, the Federation identified that The New EPS concentrated 22% of the deaths, equivalent to 324 cases, in the same period January-August 2025. In absolute terms, they are followed by large EPSs such as Sura and Sanitas. “The absolute numbers are essential to size the problem. The rates per 100,000 members dilute the real weight of deaths when the total number of members is used and not the population diagnosed with a rare disease,” the entity explained.

Fecoer insisted that the Ministry should regularly publish the absolute numbers of deaths due to EPS, the denominators adjusted to the population with diagnosis and the continuity indicators, such as authorization times, treatment interruptions and episodes of shortages. “The concentration of deaths in certain EPS, added to the excess compared to the historical average, points to a systemic access failure”, he noted.

The Federation also denounced the restriction of access to Sispro, which occurred after the official statement on October 9. According to the organization, The blockade prevented public consultation of information on mortality, care and follow-up, affecting the traceability and verification of data. “The closure of Sispro generates uncertainty about the integrity of the records and hinders the identification of patterns that require immediate response from the State,” warned Fecoer.

The New EPS concentrated 22% of the deaths, equivalent to 324 cases in the same period analyzed.

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The moment in which the blockade occurred has been interpreted as a particularly serious event. “It is worrying that the restriction occurred just when transparency about the death figures was requested. This constitutes a violation of the right of access to information, enshrined in article 74 of the Constitution.”said the Federation.

The organization recalled that this measure contradicts the commitments assumed by the Ministry itself in the National Management Plan for Orphan/Rare Diseases, launched on April 30, 2024. This plan included transparency goals, institutional strengthening and publication of indicators. “The closure of Sispro prevents the objectives of the Plan from being met, limits the generation of knowledge and weakens the formulation of evidence-based policies,” said Fecoer.

In weeks prior to the blockade, Fecoer’s official account had been blocked on the X network by the Nueva EPS, an entity intervened by the national government. According to the Federation, this action reduced the possibility of institutional dialogue. “Both events—the blocking of networks and the restriction of Sispro—reflect a worrying pattern of limiting access to public information.”stated the organization.

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In 2024, $500,000 million were allocated for Maximum Budgets, compared to estimated needs of $4.8 trillion, with a cumulative execution of $3.2 trillion as of August 2025.

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Financing

In financial matters, Fecoer pointed out that the definancing of the health system has been a determining factor in the care crisis. According to their analysis, the initial appropriations for the Maximum Budgets have been insufficient. In 2024, $500,000 million were allocated, despite the fact that needs exceeded $4.8 trillion. Only after adjustments and additions, the execution reached $3.2 trillion as of August 2025.

Besides, Monthly transfers present high volatility, with payments that have ranged between $75,000 million and $650,000 million in different months. “Delays of up to three months persist, despite the fact that the Constitutional Court has ordered disbursements within the respective month. This instability compromises the timely purchase of medications and the continuity of high-cost treatments,” indicated the Federation.

The document also evaluated non-compliance with the National Management Plan for Orphan/Rare Diseases, which includes goals in diagnosis, social participation and knowledge generation. According to Fecoer, The neonatal screening goal established by Law 1980 of 2019 has not been met nor has the network of reference centers been expanded, which continues with six enabled in the country.

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Fecoer denounced the blocking of public access to SISPRO following the statement from the Ministry of Health on October 9, 2025.

Courtesy

The National Orphan Diseases Table, the main coordination body, only met three times in 2025 (April 8, September 2 and 17), when it should do so every two months according to Resolution 1871 of 2021. “The Ministry, which acts as the Technical Secretariat, has not disclosed monitoring reports or updated action plans.”Fecoer stated.

In the line of knowledge development, the official list of orphan diseases has not been updated either, the latest version of which corresponds to Resolution 023 of January 2023, nor has information been published on the quality of the national patient registry. “The goal that ordered public viewing of the indicators by 2025 was not met. The closure of Sispro actually prevents its execution”he added.

The Federation maintained that there is no evidence of effective implementation of the Plan in the territories or of technical support to local entities. “Patient organizations are assuming functions that should correspond to the Ministry,” he said.

Finally, Fecoer recalled that in May 2025 Colombia was a co-sponsor of the Resolution on Rare Diseases at the World Health Assembly in Genevawhich urged States to strengthen the identification, diagnosis and data collection on these pathologies. “The blocking of data and non-compliance with the Plan contradict international commitments and project an image of regression in health governance,” concluded the Federation.

DIANA K. RODRÍGUEZ T.
Portfolio Journalist

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