What positive changes have happened for people with HAE, in your country, from 2012 to now?
- A greater breadth and awareness of HAE has been achieved both in the general population and in health personnel.
- Training has been provided to doctors, nurses, dentists and medical students, in hospitals and universities on HAE.
- The number of doctors who are experts in HAE has increased, which has facilitated an increase in the number of diagnosed patients.
- Meetings and Congresses are held at the national level for HAE patients to present the latest advances in the diagnosis and treatment of HAE, to improve quality of life.
- Alliances have been established with other NGOs of orphan, rare or low prevalence diseases such as: OMER (Mexican Organization of Rare Diseases), FEMEXER (Mexican Federation of Rare Diseases), Nobody is Less Initiative, ALIBER (Latin American Alliance of Rare Diseases), to make government authorities listen to us and to influence public policies.
- Two Legislative Forums on Hereditary Angioedema have been held in collaboration with the Health Commission of the Chamber of Deputies to make the authorities aware of HAE.
- We are working to establish a national registry of HAE patients.
- The public health authorities have approved drugs for the treatment of HAE: ISSSTE, IMSS and PEMEX included Berinert and Firazyr in their catalogue of drugs for the treatment of HAE.
- The Mexican Association of Hereditary Angioedema has participated in national and international medical-scientific forums for the dissemination of information about HAE.
- Mexico participated in the “Phase 3, randomized, single-blind and crossover multicenter study, with varied doses, to evaluate the safety and efficacy of intravenous administration of CINRYZE® (C1 esterase inhibitor [human]) to prevent Angioedema Attacks in Children 6-11 Years Old With Hereditary Angioedema”.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
- Being able to access 4 firstline drugs to treat patients with HAE.
- Improvements in the diagnosis of HAE.
- Improving the quality of life of those who suffer from HAE, by reducing mortality.
What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?
Holding two Legislative forums in the Chamber of Deputies in the last two administration periods, and as a result being able to introduce new drugs for HAE to the country.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
- We are building our website with HAEi.
- We were among the first to use the HAEi Connect database platform.
- HAEi has supported us to attend the HAE Global Conference.
- HAEi has supported us with back-up participation in legislative forums and the Latin American Congresses of HAE
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
- That the majority of patients have access to specific HAE medications, whether they are entitled or not.
- Have a National Reference Center for HAE.
- Conduct HAE screening at the national level to increase the percentage of people diagnosed with HAE, since the disease is currently underdiagnosed in the country.