CFV4L
1
Cystic fibrosis in Latin America—
Improving the awareness
This article analyzes CF prevalence based on live birth incidence. It also discusses the need for consistency in access to services particularly in the regions of Latin America, including critical elements of the comprehensive care model, such as: patient registries, neonatal screening, CF specialty care, and individualized treatment.
2
Worldwide Rates of Diagnosis and Effective Treatment for Cystic Fibrosis
This article analyzes CF diagnosis estimated prevalence by region of the world and country relative to access to modulator therapy including triple combination therapy (i.e., Trikafta) based on existing patient registries, surveys, population data, and literature reviews.
3
More Mornings for CF Warriors in Developing Countries: Improving Access to Basic Evidenced Based Care
This slide deck was developed to raise awareness and inform donors of some of the key global CF challenges (10/11/2023) by Mark Tremblay, President of CFV4L with the social media efficacy slides presented by Jacob Vendetti, Founder and President of Live Fearless Foundation. It summarizes the vexing, yet surmountable challenges and key policy suggestions that CF humanitarian aid organizations can do to cost effectively improve CF mortality rates and quality of life.
5
Comparison of the Flutter Device to Standard Chest Physiotherapy in Hospitalized Patients With Cystic Fibrosis
This study shows that there is a lack of statistical difference in relative efficacy between a CF therapy vest and futterer handheld airway clearance device during a hospitalization due to a CF acute exacerbation. That is hand held airway clearance devices can be as effective as therapy vests and far more cost effective in mitigating the frequency, intensity, and length of pulmonary exacerbations and in improving pulmonary function as measured by FEV-1.
6
Disparities in Cystic Fibrosis Survival in Mexico: Impact of Socioeconomic Status
This relatively large sample size study in Mexico shows that the average life expectancy is 21.3 years which is among the lowest in South America despite per capita health care spending being among the highest in South America. By contrast, Columbia, a country with lower per capita health spending, has an average life expectancy of 50 years. Additionally it concludes that the three main independent risk factors for CF mortality in Mexico are: socio-economic status, Psuedomonas colonization by six years of age, and enzyme pancreatic Insufficiency (EPI).
7
Terrified Cystic Fibrosis Patients Fear for Life-Saving Medication as Supplies Dwindle
Evidence is beginning to emerge that Creon supply shortages are negatively impacting the largest single payor healthcare system in the world National Health Services which covers the entire European Union. The estimated 11,600 CF coverage by the plan are facing strict rationing that will leave many with insufficient to maintain their Body Mass Index (BMI).