Hemophilia Affects 5,000 in MexicoBy Sofía Garduño | Mon, 04/18/2022 - 15:37
World Hemophilia Day is observed every Apr. 18 to increase awareness of this rare blood disease that affects over 5,000 people in Mexico. Early treatment can prevent disabling consequences and reduce the risk of death, according to the Ministry of Health (SSA).
“Prevention and early diagnosis are needed in general medicine so that people who suffer from the disease receive specialized attention as soon as possible,” said Lourdes González, Hematologist, National Pediatrics Institute (INP).
The majority of hemophilia cases are hereditary, with mothers being both transmitters and carriers. About 70 percent of the children with a hemophilia background are diagnosed at birth or after their first hemorrhage. In Mar. 2022, the General Health Council released the updated Technical Protocol of Attention to Hemophilia, which includes protocols for carrier mothers and hemophilic adults for the first time.
“Before adjustments to the protocols, carrier mothers were invisible to the health system. Their health needs were not linked to hemophilia nor the system; we are overcoming large barriers and are starting to be visible in the map,” said Minerva Cruz, President, Mexico’s Hemophilia Federation, to El Economista.
About 30 percent of hemophilic patients have no family history of the disease. These patients are diagnosed in situations that boost bleeding such as vaccination, circumcision or bruising. Hemophilia is a rare disease because it presents only in one in every 10,000 men. In 2018, hemophilia was cataloged as one of the 20 rare diseases recognized in Mexico, as reported by MBN.
In Sep. 2021, Mexico launched a National Census of Rare Diseases that aimed to collect information on their prevalence to improve the treatment of patients, but the census was quietly called off after its first month. Although the census was an important initiative, there are other actions to be implemented to improve care for rare diseases, such as legislative and accessibility strategies, said David López, Rare Disease Expert, to MBN. Raising awareness about hemophilia among policy makers is necessary to guarantee sustainable and equitable access to care and treatment, said the World Hemophilia Federation (WFH).
About 75 percent of those suffering from hemophilia does not receive medical attention because they are unaware of the disease. The main treatment to control hemophilia is the restitution of the deficient factor, usually with coagulation factors derived from human plasma with double method of viral inactivation or from recombinant factors, according to WFH.