Business Empresarial.- Within the framework of World Hemophilia Day, it is important to note that, in Peru, despite the advances in treatment, there is still a significant gap in the diagnosis and in access to adequate care for patients with hemophilia. Currently, only 1,000 people are diagnosed; However, it is estimated that around 3,000 Peruvians live with this condition.
Dr. Nancy Loayza, head of the Hematology Service of the Dos de Mayo national Hospital, explains the urgency of identifying all patients with hemophilia in the country, considering that only 1 in 3 would be diagnosed. This situation prevents the design of effective public policies and leaves hundreds of people without proper treatment. In that sense, the specialist highlights the importance of having an exhaustive national registry of patients with hemophilia, which allows to implement more effective health policies and assign the necessary resources to guarantee adequate care by the state.
“Hemophilia represents a medical and social challenge, since if it is not diagnosed in time, the consequences can be disabled and irreversible. This gap not only prevents timely care, but also limits the state’s ability to design effective public policies. Therefore, it is urgent to establish a national record of patients with hemophilia, as a basis for properly planning the distribution of resources and treatments,” said the DRA. Loayza.
-Although Peru has a recently regulated rare disease law, its practical application has not yet had a real impact on patients’ lives. “The norm exists, but it has not translated into concrete improvements, it is urgent to move from paper to action, since one of the main obstacles is the centralization of specialized services in Lima. This forces people who live in other regions to move to receive diagnosis or treatment, which generates a silent abandon The specialist added.
In addition, it is warned about the limited coverage of therapies that are already available in the country. Currently, only patients with inhibitors access certain innovative treatments, while others are excluded, although their lives also depend on them. According to the World Hemophilia Federation, starting treatment from early stages can prevent severe joint damage and reduce the frequency of hemorrhages, allowing patients to lead an active life. However, in Peru, early access continues to be a pending promise.
On this World Hemophilia Day, Dr. Loayza calls to make visible the situation of patients, demand a national registry, decentralize care and guarantee equitable treatments. “Living with hemophilia should not be a sentence of limitation, but a treatable condition with the support of a health system that works for all,” he said.
