It is estimated that in Brazil almost 400 thousand people have this disease, and only 12 thousand have already been diagnosed and are being treated.
In Brazil, the main challenges found by these patients are:
• Lack of information,
• Lack of knowledge from medical professionals,
• Lack of referral for second medical opinion,
• Restricted access to genetic testing,
• Late diagnosis,
• Ignorance and lack of access to adequate treatment,
• Lack of disease maintenance and follow-up,
• Lack of psychological support for patients and their families,
• Lack of culture and difficult access to healthy eating habits.
Nevertheless, this reality is changing due to better access to information (via Internet and through social media), greater disease control (due to advances in drug research, and the availability of drugs that are more effective with less side effects) and due to the creation of experimental projects, such as the one being conducted by Incor (Heart Institute of the Clinics Hospital of the Medical School of the University of São Paulo). Also working in this field are other institutions such as São Paulo Hospital of Paulista Medical School of the Federal University of the State of São Paulo – UNIFESP and Instituto Dante Pazzaneze.
In May 21st 2014, the Brazilian Association of Patients with Familiar Hypercholesterolemia (AHF – Associação dos Pacientes Portadores de Hipercolesterolemia Familiar no Brasil) was founded. It is formed by patients and their families, and it is supported by a
Scientific Council of specialist physicians. In November 2014, a strategic planning effort was made by the mentioned Association, and the main directives and objectives that will guide the group work
during 2015 and 2016 were established. These strategic objectives are:
1. To map persons with suspected diagnosis of FH.
2. To increase the number of the association members (patients, relatives and health professionals).
3. To widen the patients, health professionals, government organs and the general society knowledge of this disease, its diagnosis and treatment.
4. To promote the FH acceptance through the creation of a specific ICD (International Classification of Diseases).
5. To support scientific research development for FH and related diseases treatment.
6. To influence entities, managing officers and politicians in order to guarantee the patients’ rights.
The association aims to contribute to:
• Increase the number of early diagnosis,
• Increase the access to genetic testing,
• Reduce the number of AMIs due to FH,
• Reduce the number heart surgeries in patients with FH
• Reduce the treatment side effects,
• Reduce the number of deaths due to FH,
• Increase the number of persons with FH that have a good quality of life.
The organizational values of the Association are:
• The patient always comes first,
• To be fair with everybody involved in FH,
• To be ethical in managing all resources received,
• To work together with other acting bodies,
• To be responsible about all information and guidelines passed on to the community,
• To value, share and celebrate this Association achievements with the community.
The President of the Brazilian Association of Patients with Familiar Hypercholesterolemia is Mr. André Luis Batista Pereira. Dr. Maria Cristina Izar, Dr. Raul D. Santos Filho and Dr. Tania L. R. Martinez are members of the Scientific Council.
See below the contact information:
Brazilian Association of Patients with Familiar Hypercholesterolemia:
R. Cmte Ismael Guilherme, 358
São Paulo, SP – Brazil
Phone: +5511 983 239 863