The beginning of 2025 has brought with it important challenges in the field of health, especially for patients with orphan diseases, who depend on constant and specialized medical care to maintain their quality of life. The insufficiency in the increase in the Capitation Payment Unit (UPC), worsens already worrying deficiencies in the provision of health services.
(Read: The Adres transferred $7.09 billion to the EPS in December for the health of Colombians)
Luz Victoria Salazar, president of the board of directors of the Interinstitutional Observatory of Orphan Diseases (ENHU), highlighted the challenges faced by patients, budget constraints, and the potential implications of accumulated debt on the healthcare system.
Why does the UPC adjustment affect orphan diseases?
We started the year with news that really caused us a lot of concern. The first has to do with the UPC, which we expected this year to correct the deficiencies of 2024, making an increase well above what was done. Since the figure was so low, this raises concerns that services will not be able to be provided.
Patients with orphan diseases, which are also chronic by definition, permanently need health services, such as appointments with specialists, follow-up exams, and going to providers to provide them with the care they require. Since resources are so low, we would expect that this benefit will be limited.
The exams are going to be very long, which is already happening. The appointments are not being timely, they are not being able to reach the care sites because some are not providing services due to the debts that the EPS have with the providers. And if that happens today, we know it will get worse in the future.
(See more: Alarm in the health sector due to insufficient increase in the UPC for 2025)
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What is happening with the medications?
There are two problems. One is the shortage. There are some molecules that actually have difficulty obtaining in the country and we feel that the efforts that have been made by the Ministry, to be able to solve this issue, are being very delayed. So delayed that there are even patients who have died due to lack of medication.
The other issue is access to the treatments that patients with orphan diseases regularly receive, who are subject to many barriers. This is because the EPS declare that they do not have the resources, that the Adres is owing them money from 2024 and even a large account from 2022. This for an item called maximum budgets.
We are at great risk that patients will continue to deteriorate due to lack of treatments. Their lives are at risk due to this lack of treatments and the responses of many EPS is that the money has not arrived to be able to buy these treatments.
(See also: The challenges in the care of orphan diseases in Colombia)
Which of these diseases can be highlighted?
We have multiple sclerosis, which is one of the most common. Cystic fibrosis, Gaucher disease, pulmonary hypertension, hemophilia, among others. They are not so well known because they occur in a very small population, there are very few patients of each disease.
(Read: Anif warns that insufficient increase in the UPC has risks for the health system)
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How many patients are there in the country?
The figure is around 100,000 patients registered in the National Single Base of Patients with Orphan Diseases that are in the Ministry. That does not mean that they are the ones in Colombia, those are the ones registered and we are aware that there is under-registration. The population should reach almost one million patients, but they have not yet been registered.
(Read also: National Medical Board demands urgent reform of the country’s health system: what it proposes)
How do you see health reform?
The reform that was presented last year addresses the issue of orphan diseases, but there is no depth that shows us forceful actions. Especially in what the attention is going to be like. It should, for example, consider the need that patients have to be treated in specialized or reference centers, which already have other laws but which have not been effective in our country.
Also, there must be a route where the patient is treated from specialties such as genetics and all those they need, precisely, in these centers and that they come together to end up with a treatment. There are many things that we would expect the reform to have but it has not been achieved.
However, there does not necessarily have to be a reform to achieve that for our patients and we hope that the Ministry is aware and we begin to work on the issue to achieve what they require.
(See more: Colombian Patients demand urgent responses from the Government regarding the health crisis)
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Is out-of-pocket spending increasing?
Patients are increasing their out-of-pocket expenses, because if they do not have an appointment or approval to have tests, those who can are going to particular places to gain access. Likewise, the service sites are being limited and the geographic location is sometimes not the most convenient and they have to spend much more.
In general, there are hidden expenses that are not taken into account, which cause the patient to have to take more money out of their pocket. These are those when the patient faces a system that denies him everything and turns to the judicial apparatus to assert his rights.
This also generates other types of expenses that are never considered and it is worth the opportunity to say that we have a concern because the constitutional mechanisms or tools such as protection and contempt are no longer working.
A patient can present up to eight contempts for the same act because they do not receive their treatment and that is becoming a landscape. The entities required to respond are not responding but nothing is happening either. If in Colombia we have been so proud of this protection of the right from a constitutional point of view, that is going to the ground.
(See: Financial crisis and access to health, a worrying panorama for the sector)
Have you had any contact with the Government?
I am a member of an orphan diseases table in the Ministry and we constantly talk about all these issues. We have expressed this insufficient payment and this delay in maximum budgets. But we are talking to a State that does not recognize all that lack and all those debts, but anyway says that it is turning around.
We do not have the answers that we would hope to have, such as assuming the needs and what is failing to look for solutions. We have not found that.
(Read: Minsalud details the inconsistencies of the EPS for the calculation of the UPC)
