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Global HD: Huntington’s Disease in Peru

Author: Amanda Szerdi

The National Institute of Neurological Sciences, located in Lima, is the primary medical facility in Peru that can provide patients with a definitive Huntington’s Disease diagnosis. In June of 2011, Peru passed La Ley de Enfermedades Huérfanas or the “Rare and Orphan Illness Act.” This law provides funding for additional medical treatment and awareness initiatives for individuals affected by diseases, such as Huntington’s, that result in death or chronic disability. Federal programs and the Seguro Integral de Salud (SIS) cover the costs of appointments, transportation to clinics, treatments, and hospitalizations. Additionally, the Ministry of Health established the last day in February of each year as a “Dia Nacional de Enfermedades Huérfanas o Raras en el Peru” or a “National Rare Diseases Day in Peru.” These policies have helped to raise awareness of Huntington’s disease in Peru while striving to provide better care for patients.

Important researchers:

Miriam Velez

Dr. Miriam Velez works at the National Institute of Neurological Sciences in Lima. She is one of the primary neurologists on staff who specializes in treating Huntington’s disease and neurodegenerative disorders. She, in addition to Dr. Carlos Consentino, are doing their best to offer genetic testing as well as education about Huntington’s disease to HD patients and their family members.

Pilar Mazzetti:

Dr. Pilar Mazzetti became interested in neurology while studying to become a medical doctor at the National University of San Marcos. She has served as the Minister of Health and the Minister of the Interior in Peru. She currently works at the National Institute of Neurological Sciences in Lima, the primary facility in Peru where Huntington’s disease is diagnosed and treated. Dr. Mazzetti has worked to introduce and develop the practice of genetic testing for neurological diseases in Peru. Relatively little research had been conducted in Peru in relation to genetic diseases, and researchers such as Dr. Mazzetti face many challenges while completing their work. Research typically does not receive sufficient funding and must be completed by doctors after caring for their regular patients at the clinic. Dr. Mazzetti’s recent work has focused on the psychiatric symptoms of HD patients in Peru as well as the genetic origins of HD in Peruvian populations.

Mario Cornejo

Dr. Cornejo is the director of neurogenetics at the National Institute of Neurological Sciences in Lima. He has studied neurology and genetics in both Peru and at the University of Washington, located in Seattle. Dr. Cornejo has worked on neurogenetic studies for a variety of neurodegenerative diseases including Huntington’s Disease. He has worked with Dr. Pilar Mazzetti researching the genetic origins of Huntington’s Disease in Peruvian populations.

Source: National Institute of Neurological Sciences website < http://incngen.org.pe/>

 

Resources:

Web pages with information regarding health insurance and care provided by the National Institute of Neurological Sciences can be found below:

National register for individuals with rare diseases:

Registro Peruano de enfermedades raras y huerfanas: <http://www.minsa.gob.pe/erh/normas.html>

Peruvian Ministry of Health:

Ministerio de Salud de Peru, pagina de seguros medicos: <http://www.sis.gob.pe/nuevoPortal/>

National Institute for the Neurological Sciences website:

Sitio web para el Instituto Nacional de Ciencias Neurologicas:

<http://incngen.org.pe/>

 

Acknowledgements:

A huge thanks goes out to Doctor Miriam Velez for her help in acquiring additional information regarding how patients in Canete, Peru and surrounding areas receive care for Huntington’s Disease. While living in Peru during the summer, I contacted Dr. Velez as a HOPES student researcher. She agreed to meet with me in person at the National Institute of Neurological Sciences in Lima so that I could better understand treatment options for Huntington’s Disease patients in Peru. The hospital where patients with neurodegenerative diseases are treated is not far from popular sites such as the Monastery of San Francisco and the historical district of Lima. I was accompanied by a close friend, Cindy Maximiliano, who also lives in Lima. Her help was also essential in locating the hospital and interviewing Dr. Velez.

We were extremely fortunate to briefly visit with Dr. Velez between patient visits. She described to us how her interest in neurological disorders developed as she began to study medicine. She also informed us that the Instituto Nacional de Ciencias Neurologicas is the only clinic in all of Peru that can provide the necessary genetic tests to provide a formal Huntington’s diagnosis to any individual. Similarly, she described to us the different national health insurance programs that provide transportation to the clinic and pay for the healthcare of those with Huntington’s Disease in Peru. While many policies have been developed to improve care for patients, receiving funds is often a long process that takes time. Furthermore, loosely enforced medical regulations can make it difficult to standardize care. The visit was one of the most impactful experiences during my time in Peru.

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