Seeks to empower the patient

MEXICO CITY (EFE)— Empowering patients living with hemophilia in Latin America, creating spaces for interaction, providing support, and encouraging the participation of family members and healthcare professionals are the main objectives of the “Extraordinary Lives” initiative, promoted by the pharmaceutical company Roche.

"When we talk about hemophilia, there's a lot of stigma attached to it, because we think of people who cut themselves and bleed, but we don't stop to think about what these people's lives are like, and that's why 'Extraordinary Lives' was born," said Carolina Ocampo, the firm's hemophilia mediator for Latin America, yesterday.

Hemophilia, explained epidemiologist María Margarita Guerrero, is a hereditary bleeding disorder that is part of a group of coagulopathies, in which alterations in the blood clotting process occur.

“What happens to patients with hemophilia is that they have a deficiency in a protein that causes prolonged clotting times or a failure to clot; therefore, they are at high risk of bleeding and can die from these effects.”

Hemophilia genes are located on the X chromosome. There are three subtypes of the disease, the most common of which is Type A, caused by Factor VIII deficiency and affecting 48% of patients worldwide. Within this group, 30% have the severe form, with less than 1% of Factor VIII in their body.

It is estimated that of the 219,000 people with hemophilia worldwide, 75% have not been diagnosed.

One of the main problems with this disease in Latin America is that the population lacks access to comprehensive care from diagnosis to treatment, and it is estimated that only 56% of those with hemophilia in this region are diagnosed.

Ocampo noted that people with hemophilia live with many limitations because they depend on their families. Therefore, the "Extraordinary Lives" initiative, launched in 2024, seeks, among other things, to create a support network.

"Having a strong enough support and social network that also supports the mother, that provides support for extended family and friends," the mediator noted.

Likewise, it seeks to ensure that patients, family members, and healthcare professionals have accurate information and collaborate with patient associations.

“Access to medical care and treatment is critical because patients cite many barriers, such as health systems failing to address their specific needs, delays in care, or a lack of specialized services.”

The goal, insisted Dr. María Margarita Guerrero, is to empower patients and expand their knowledge of the disease, "so they can recognize the clinical outcomes, the warning signs, the appropriate treatment, and when to seek urgent medical attention."

Likewise, she stated, it is important to stop believing that it is a disease that only affects men, when we already know that it also affects women, and "that they too should know that it exists."

Ocampo emphasized that "Extraordinary Lives" also seeks to be a space to strengthen family and emotional ties, as the family unit plays a crucial role in patients' quality of life.

To learn more about the initiative, you can visit its website and Facebook and Instagram profiles.