2024-10-09 19:35:00
With banners, flags, photographs of patients and processions with messages to Ministry of Health and National GovernmentThis Wednesday families, patients and representatives of patient organizations held a meeting sit-in in front of the headquarters of that ministry challenging solutions a defunding of the system and shortage of medicines for the treatment of rare or orphan diseases.
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The associations, representing 73 patient organizations, raised their voices in the face of the serious crisis in the healthcare system that prevented these patients from accessing comprehensive care.
According to the organizations, more than $2.5 trillion corresponding to 2022 adjustments and July, August, and September 2024 maximum budget paymentswhich puts you at risk approximately 90,000 patients suffering from orphan diseases in the country.
Due to these circumstances, many patients do not receive treatment for more than a month, making a government response that allows the flow of resources in the supply chain more important.
“This crisis is a flagrant violation of the health law 1751 of 2015, which recognizes the population affected by orphan diseases as subjects of special protection. So far the government has ignored the Constitutional Court order to guarantee the flow of resources within the system and the payment of debt.“he said Diego Gil, director of Fecoer.
“We urgently ask the authorities to allocate and release the necessary resources to cover the pending budgets. The damage caused by lack of access to care is irreparable, as these conditions progressively progress and the outcomes are, in many cases, fatal“Added Gil.
The organizations assured that they had alerted the authorities to this situation for several months, but until now there has been no effective response. They underlined that if the crisis continues without any kind of measure, the end of the year will be critical for the system.
«Today, having a favorable ruling does not guarantee that patients will obtain all the necessary benefits. It is urgent for judicial bodies and their respective supervisory bodies to act immediately, as patients and their caregivers suffer the wait, losing quality and life expectancy. Immediate actions requiring political will, effective management and clear commitment are needed to guarantee the fundamental right to health,” he said. Luz Victoria Salazar, president of ENHU.
In the middle of the sit-in, the president of the Association of High Cost Patients, Néstor Álvarezhe said this protest would continue Next Wednesday, October 16, if Minister Guillermo Jaramillo does not guarantee his presence at the dialogue tables proposed by the institution. “Today the government did not respect the table that had been convened to continue to provide solutions to the problem of critical substances and active ingredients in the management of epilepsy and some orphan diseases,” he said.
Likewise, he added that they were invited to a meeting, but that they did not agree to participate “until the minister leads it and is always present for commitments, taking into account that it was violated and no response was given from the first sit-in”.
“We will call for eight days starting today every patient, who has not been administered drugs and who does not have updated treatment, at 9 in the morning again (we will be) in front of the ministry.” until you show your face and no longer continue to dehumanize the problem and remain indifferent“added Alvarez.
The invitation to this dialogue was made by Deputy Minister of Public Health, Jaime Urregowho came to the demonstration and told many of those present that “we can sit down, a delegation can come in, we can reaffirm and enrich the agenda, answer questions that we can answer.” However, the official was questioned by several people who saw the health of their family members jeopardized by the lack of medicines and the system’s defunding crisis, who expressed their refusal to hold more meetings and called for quick solutions.
In these pages EL COLOMBIANO told the stories of Juan Manuel Villamil and Valentina Reyestwo children suffering from orphan diseases who died this year because they could not access medicines for their treatment, as well as an x-ray of the debts that the Government of Gustavo Petro with the payment of resources that finance the healthcare of patients suffering from this type of disease.
To read more news on politics, peace, health, justice and current affairs, visit the Colombia section of EL COLOMBIANO.
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