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Middle East CF Association
2019/20 Impact Report
Improving Middle East CF patients health outcomes
Where we focused in 2019/20
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Cystic Fibrosis remains under diagnosed in most countries in the Middle East and Africa. There are large numbers of patients who are being treated for symptoms but never accurately diagnosed. Turkey is the only country in the region with New Born Screening and genotyping for CF. Most countries have very little if any CF medication and equipment needed to manage the disease and allow patients to live a human and productive life. We focus on diagnostics, lobbying and the development of CF centers.
The Middle East current availability of accurate CF diagnosis indicates that without a systematic and sustained intervention, CF rapidly leads to death, with a high economic and emotional cost to patients and their families. Misdiagnosis and lack of confirmed cases of CF make it difficult to convince health ministries to include CF care in their annual budgets. Many countries in the Middle East and Africa lack any form of CF diagnostic equipment and testing is not supported by health programs.
Education is KEY to establishing CF Centers staffed with qualified CF care professionals. The We Care Program supports training for clinicians, allied health and microbiologists at MEFCA approved CF Centers. Participants education is based on US CF Standards of Care with the goal to reach optimal care with resources available. The long term goal is to have at least one CF Center staffed with a trained CF team in every MECFA member country.
The management of CF includes a daily need for medication and special equipment to manage the disease. Often these therapies are expensive, unavailable in the country and overlooked by health authorities. Countries partnering with MECFA will benefit from support lobbying health officials to provide basic medication and equipment.
Countries where we had impact in 2019
Giving CF patients a fighting chance
At MECFA, we believe that even small acts of generosity can create lasting change in CF patient's lives, their families, and their communities. Ultimately, transforming the future of patients in the region.
Our extraordinary beginning proves the point. Four years ago, in 2016, a group of dedicated pulmonologists took up the collective challenge to improve care for CF patients in the MENA region. In fact, they were so compelled by the suffering of patients, they had privately begun to support the most vulnerable by offering free care and donating essential drugs. They were responsible for organizing the first CF conference ever held in the Middle East in 2007. They had boldly taken on their health ministries lobbying on behalf of patients and fought to develop CF centers in their hospitals. Our founding clinicians paved the way for a brighter, healthier, and happier future of CF patients in MENA. Their cause was saving patients and relieving suffering. A cause that soon became the first regional CF focused charity and continues to inspire our work to this day. In an ever-changing world, thanks to supporters like you, we’re changing hundreds of CF patients' lives!
So how many lives did we change last year? In 2019, we educated over 300 clinicians from 8 countries, including a pivotal pilot education exchange program that will lead to the first US standard CF Center in the region. Hundreds of patients who are treated in Centers where we provided training for CF care teams have improved health outcomes. Our focus on providing diagnostics will ensure early diagnosis and early intervention for thousands of patients. We continue to advocate for change on behalf of all patients for access to essential therapies and specialized care. Patients whose lives are better, whose futures are brighter, because of your actions, your generous support, your commitment to our shared cause.
In gratitude, we invite you to review this special annual report, which not only highlights our 2019 achievements and reports on our financials but also recognizes our supporters and commemorates our year of success.
We look forward to 2020 and hope you will continue with us on our journey to help people with Cystic Fibrosis in the Middle East and Africa.
On behalf of MECFA,
Christine Noke, CEO
Medical and Scientific Committee
Prof. Ibrahim Janahi, Qatar
Dr. Nisreen Rumman, Palestine
Prof. Hussein Alkindi, Oman
Prof. Bulent Karadag, Turkey
A Year in Pictures
The 3rd Middle East CF Conference MECFC 2019
took place in Istanbul at the Sisili Marriott Hotel on March 21-23rd. The conference theme was "Working towards Optimal Care," and covered topics such as EU Standards of CF Care, clinic cross-contamination protocols, genotyping for standardized care, and treating patients without access to essential drugs. Pre-conference workshops were added to this year's agenda covering diagnosing CF, nutrition, and physiotherapy in CF. Over 300 delegates from the region and internationally attended and the conference was supported by 17 companies. Visit our website for MECFC 2019 presentations and abstract submissions.
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The MaMi project
is a pilot and feasibility project to establish a care center at the Marmara University Hospital in Istanbul, Turkey. The Marmara CF Center will be able to manage all clinical aspects of patients with CF, following the best evidence-based care guidelines and adapting them to Turkey’s setting. The program is training a multidisciplinary expert CF Team from Marmara CF Center. The training is occurring under the direct and continuous supervision of the University of Michigan (UM) CF Center in the USA. The program focuses on quality improvement (QI) projects with the UM CF team working closely with the University of Marmara (UoM) CF Center. Areas of QI work include: improving BMI, improving pulmonary function testing, implementing Infection Prevention and Control (IP&C) in the center. Learn more
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Diagnostic Pilot Program
In the Middle East, there are vast differences in the availability of adequate health care, particularly in Africa. The main differences are financial resources available to the health ministries across the region. CF, as a rare disease and until recently believed to only exist in Caucasians, is not supported in countries that have large populations such as Egypt and Jordan.
In most MENA countries, CF is still vastly underdiagnosed. Symptoms are treated but diagnosis never confirmed, or children are clinically diagnosed with CF but are not suffering from the disease. Misdiagnosis and lack of confirmed cases of CF make it difficult to convince health ministries to include CF care in their annual budgets.
The goal of this pilot diagnostic project is to donate 10 CF diagnostic systems, 10,000 tests to 10 pediatric hospitals, and provide onsite training for technicians and clinicians participating in the program. MECFA will also invite clinicians enrolled in the program to attend a half-day deep dive diagnostic workshop taking place at the 4th Middle East CF conference in Muscat Oman.
The long term goal of this program is to continue donating diagnostic systems and testing supplies to
government-funded pediatric hospitals in the region.
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MECFA at the NACFC 2019, Nashville USA
MECFA CEO, Christine Noke, and medical committee members, Dr. Nisreen Rumman, Prof. Bulent Karadag attended the North American CF Conference on behalf of MECFA. The NACFC 2019, held in Nashville, Tenn., offered the opportunity for networking with US clinicians interested in supporting MECFA taking part in our educational programs. MECFA was warmly welcomed by Dr. Preston Campbell, CEO of the CF foundation. The MECFC 2020, our upcoming annual conference was referenced in the NACFC program.
The North American Cystic Fibrosis Conference (NACFC) provides a collaborative and educational forum for CF professionals to help advance CF research and care. This annual meeting brings together scientists, clinicians, and caregivers from around the world to discuss and share ideas on the latest advances in CF research, care and drug development and to exchange ideas about ways to improve the health and quality of life for people with CF.
The NACFC 2020 will be held in Phoenix, Arizona, visit the conference website to learn more.
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