Living with an orphan disease represents a daily challenge for nearly 100,000 Colombians and their families, according to records from the Ministry of Health and Social Protection. From the moment of diagnosis, an odyssey begins to understand and treat these pathologies that, According to Law 1392 of 2010, they are chronic, debilitating and potentially fatal.
(Read: Anif warns that insufficient increase in the UPC has risks for the health system)
Globally, These diseases affect a small number of people, which limits research, the development of treatments and access to specialized medicines.
Luz Victoria Salazar, president of the Board of Directors of the Interinstitutional Observatory of Orphan Diseases (ENHU), warned of three critical alerts that require immediate attention.
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“The impact on patient care and risk of deterioration is increasing exponentially, which could translate into increased mortality.“says Salazar. This concern is accentuated given the panorama of crisis that the Colombian health system is going through.
One of the main problems lies in the insufficiency of the Capitation Payment Unit (UPC). The Minister of Health, Guillermo Alfonso Jaramillo, reported that the increase for 2025 will be 5.36%, a figure that experts consider insufficient compared to a requirement greater than 16%.
(Read also: Colombian Patients demand urgent responses from the Government regarding the health crisis)
The head of the portfolio explained that “The calculations were affected by the inconsistent data provided by the EPS, which reported different figures to the Ministry and Supersalud.“In addition, he highlighted that the expected savings are not being generated in the dispensing of medicines.
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This situation has a direct impact on access to consultations, diagnostic tests, therapies and specialized medications. According to the ENHU Observatory, lThe lack of adequate resources aggravates the barriers to access to essential services. “Consultations, examinations, therapies and other fundamental needs of patients depend on these resources,” emphasizes Salazar.
(See: Financial crisis and access to health, a worrying panorama for the sector)
Another key concern is the insufficiency in the Maximum Budgets. The Administrator of the Resources of the General Health Social Security System (Adres) allocated $502,000 million by 2025, a figure that the ENHU Observatory considers much lower than real needs. This allocation represents only one-sixth of what is required in 2024 and does not take into account the accumulated debt of $2.9 trillion from previous periods.
This defunding puts at risk the continuity of vital treatments for patients. “Non-adherence to treatments can lead patients to high-risk situations, which would increase the demand for resources and services in an already collapsed health system.“warns Luz Victoria Salazar. The interruption of therapies could cause an irreversible deterioration in the health of patients, increasing hospitalizations and mortality.
(Read more: Minsalud details the inconsistencies of the EPS for the calculation of the UPC)
Added to this is the ineffectiveness of the legal mechanisms that should guarantee the rights of patients. The ENHU Observatory denounces that tools such as guardianship and contempt are not working effectively.
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“It is unacceptable that in a country where there is special protection for people with orphan diseases, these mechanisms are not resolving access barriers“he emphasizes.
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Delays in responding to guardianships and lack of compliance with court rulings leave patients in a situation of extreme vulnerability. The ENHU urges the authorities to act quickly to guarantee timely access to treatments and services. Health and life are fundamental rights enshrined constitutionally, and their guarantee must be a priority.
The situation of patients with orphan diseases in Colombia requires an urgent and coordinated response, according to what Salazar said. It is necessary to strengthen financial resources, settle outstanding debts and ensure the effective functioning of legal protection mechanisms. Likewise, a comprehensive strategy is required that includes the promotion of research and the development of innovative treatments.
(Read: Patients Colombia requests the Attorney General’s Office to protect the fundamental right of health)
Only through a real commitment on the part of the State, the health sector and civil society can we prevent thousands of Colombians from continuing to face insurmountable barriers in their fight for health and life. “We cannot allow orphan diseases to remain invisible in public policies.“he concludes.
