Advocating beyond local authorities: Venezuela and Mexico

Gaining recognition of hemophilia and other related bleeding disorders from national health authorities can be challenging.

Often national and regional authorities argue that there are not enough resources to provide proper care and treatment for people with bleeding disorders. The work of our World Federation of Hemophilia (WFH) national member organizations (NMOs) in creating this awareness and in convincing governments to invest is pivotal to creating change. Some NMOs have gone far to create changes in policies and to create awareness for these bodies.

VENEZUELA

On the seventeenth of March 2015, the Venezuelan Association for Hemophilia (AVH) presented to the Inter-American Commission on Human Rights (IACHR) a compelling case that the people with hemophilia and other bleeding disorders need to have regular access and uninterrupted treatment of clotting factor concentrates which are deemed essential in the list of the World Health Organization medications. The IACHR is a principal and autonomous organ of the Organization of American States (“OAS”) whose mission is to promote and protect human rights in the American hemisphere.

Ms. Antonia Luque, coordinator of the AVH, states, “It causes us great concern the suspension of prophylactic treatment. Since 2002, we had treatment for all patients and now only it is only available for emergencies. We continue to lobby health authorities within the country and outside.”

The AVH belongs to an organization called CODEVIDA which brings together different groups of patients that advocate for proper care and treatment for different disease groups. The AVH first lobbied all national health agencies and bodies in Venezuela to denounce the change of treatment protocol for people with hemophilia. Since they received no reply or solutions, they turned to the Inter-American Commission on Human Rights to plead their case.

MEXICO

In April 2012, the Network for Blood Safety in Mexico (RSSM) consisting of several organizations, and led by Hemophilia Federation of the Republic of Mexico (FHRM) began a campaign to lobby legislators to ensure greater safety of the blood supply. It was a very strong campaign involving not only various legislative bodies but also targeted directly toward the federal government. The FHRM created a strategic alliance with Senator Fernando Mayans and the RSSM in order to convince lawmakers and other authorities regarding the importance of ensuring blood safety for the Mexican population. This alliance has been successful and managed to raise awareness on the issue that patient’s dependent blood components and its derivatives are at high risk of infection and it would have been a huge setback for the country to return to low standards of safety.

This year in April the President of Mexico, Enrique Peña signed an amendment to the Health Law/Act to enhance blood safety. The perseverance of the FHRM was crucial in achieving this goal and this led to the President of the Republic making this amendment.

“We believe this is an important advancement in strengthening blood safety and a breakthrough for us. It’s vital for us to observe and help the authorities in the process of establishing international standards that ensure the welfare of Mexicans, mainly looking to eradicate the level of risk of donors and patients,” stated the past president of the FHRM, Carlos Gaitan Fitch.