Rarecare: A policy perspective on the burden of rare diseases on caregivers in Latin America

Abstract

In Latin America (LA), 40–50 million people live with rare diseases (RDs) that require constant monitoring, care, and attention. Caregivers help them with their basic life activities and medication administration, which they would otherwise be unable to perform. Family caregivers complement healthcare and social security systems; however, their unpaid work is often underappreciated and under-protected. Recognizing the need to address these unrecognized and undervalued women, the Americas Health Foundation (AHF) convened a panel of LA experts on caregiving for people with RDs to provide recommendations to support the undervalued family caregivers. A panel of LA experts in caregiving for RDs were given questions to address the challenges faced by family caregivers of people with RDs in LA. During a 3-day conference, the panelists' responses were discussed and edited until the panel agreed on recommendations to address the challenges. The identified challenges for caregivers included physical, emotional, and economical areas. Caregivers, primarily women, experienced physical pain, and social isolation, and were forced to pay substantial out-of-pocket expenses in their caregiving roles. Brazil and Colombia are at the forefront of policies to protect caregivers and their experiences in attempting to provide for this group are outlined as case studies for what is possible in LA. Finally, recognizing that caregivers must be included in formulating, executing, and evaluating care policies for people living with RDs and that the caregivers themselves require social assurances, the panel suggested policy objectives aimed at protecting caregivers of people living with RDs. The recommendations ranged from recognizing the role of the family caregiver as an essential supplement to the formal healthcare system to providing financial assistance, training, and workplace protection, among others. Finally, monitoring and evaluating the impact of policies is necessary to ensure that LA is moving forward in caring for family caregivers for people with RDs.

ERCAL, a regional initiative for rare diseases in Latin America and the Caribbean

“…In Latin America, while some countries have adopted the European threshold, there is not a region-wide common definition for the prevalence of RDs. There are more than 7,000 documented RDs in the scientific literature, although it is estimated that there are about 10,000 of them [4,5] , yet most countries recognize only a small number of conditions. Approximately 40-50 million people live with a rare disease in Latin America, and 3-4 million of them belong to indigenous and underserved populations.…”

A Closer Look Into Brazil’s Healthcare System: What Can We Learn?

“…Finally, Dias et al (2023) [11] studied the burden of rare diseases on caregivers in Latin America. The study found that caregivers faced several challenges in accessing healthcare services and experienced high levels of stress and social isolation.…”