#WeCare and #MECFA advance CF care in the Middle East

“to improve and extend the lives of Cystic Fibrosis patients through disease awareness, advocacy and advanced care." MECFA

The Middle East Cystic Fibrosis Association (MECFA) is a non-governmental organization dedicated to improving and extending the lives of Cystic Fibrosis (CF) patients in the Middle East. Established in 2015 by a group of dedicated clinicians, MECFA member countries committed to CF care include: Armenia, Azerbaijan, Bahrain, Oman, Egypt, Iran, Iraq, Jordan, Kuwait, Lebanon, Pakistan, Qatar, Saudi Arabia, Syria, Turkey, UAE, Yemen and Sudan. MECFA strives to bring disease awareness, diagnostic tools, access to necessary medications and clinician education to its member countries. MCFEA established the We Care Program to help achieve these goals.

According to Christine Noke, CEO, MECFA members receive assistance to develop CF Center care, access to education through annual CF conferences and CF Center courses on treating and diagnosing CF patients. Members are encouraged to participate in the development of a regional CF patient registry and standards of care employed by international accredited CF clinics.

MECFA developed the “We Care Program” to aid clinicians in the region committed to raising CF awareness and providing proper care to their CF patients. This program supports members who engage in programs that establish MECFA certified CF centers with trained interdisciplinary teams, that help patients access disease specific medications and equipment and that provide early diagnosis and patient genotyping.

CF is a chronic genetic disorder requiring a recessive gene from each parent; there is a 25% chance of two carriers having a child with CF. CF is more prevalent when close relations marry and over 50% of Middle Eastern marriages are between first and second cousins despite programs to eliminate this practice. Incredibly, there are over 1000 genes that cause this rare disease.

CF patients produce thick mucus that lines the lungs and other organs creating a breeding ground for bacteria. As a result, CF patients need routine care consisting of regular medical visits with trained medical staff and disease specific medications to stave off infections. Pulmonary infections result in permanent lung damage causing reduced quality of life and higher morbidity rates. CF patients often exhibit failure to thrive due to pancreatic insufficiency. CF treatment includes daily chest physiotherapy and inhaled drugs to loosen mucus and enzymes taken with meals to assist with digestion.

It is estimated that there are 100,000 Cystic Fibrosis sufferers worldwide. Yet, the true number of patients is unknown because many countries lack the proper diagnostic tools to provide an accurate count. In western countries, over half of all CF patients live into adulthood and can anticipate a life span of 50 or more years because of advancements in standards of care. However, in the Middle East, few patients live to become teenagers primarily because of lack of awareness and diagnostic testing. Currently, Turkey is the only country in the Middle East with a newborn screening program; conversely, all newborns in the US are screened for CF. Furthermore, the National Institutes of Health in the US recommends that prenatal CF testing be offered to all expectant couples or those planning a pregnancy, especially if they have a family history of the disease.

In the Middle East many clinicians are unaware of CF symptoms, patients are often miss diagnosed. Moreover, diagnostic tools are often unavailable. CF is diagnosed either through a sweat test where a high salt content indicates CF or a blood sample that identifies the patients genotype. Since newborns do not sweat, conducting this test is unreliable. Therefore, MECFA works to promote newborn screening and increased patient diagnosis through the availability of accurate diagnostic equipment.

Education is vital for establishing CF Centers with CF trained medical professionals. The We Care Program arranges for clinicians, allied health and microbiologist training at established CF Centers so that participants can return to the home countries trained to provide their patients with specialized care.

Treatment requires daily medications and certain equipment designed for use by pulmonary patients. Often, these therapies are expensive, unavailable in the country and overlooked by health authorities. Countries participating in the We Care Program benefit from a better understanding of the established methods of treatment to establish routine care for their patients and from discounted or donated medications and equipment.

Additionally, MECFA assists these countries in lobbying health officials to improve CF patients’ access to care and essential therapies.

Early diagnosis means early intervention leading to better disease management and decreasing long term patient care costs. Detecting and understanding the genotype of patients in the region is important to developing standards of care. In addition, patients benefit from donated diagnostic testing to confirm suspected diagnosis.

About MECFA

MECFA is a legally registered charity and non governmental organization. MECFA plays an important role in developing a network between CF health professionals, patients, and other groups affiliated with rare disease. Our members engage in high quality medical practice treating cystic fibrosis patients, they guide research, newborn screening and data collection and work towards implementing EU and NA CF standards of care in the Middle East. MECFA offers opportunities that help translate scientific and medical progress into the efficient delivery of effective medical care. MECFA works to develop resources that guide our members in advancing CF care in the region.

Contact for this article;

Christine Noke

cnoke@mecfa.org

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