How MECFA works to improve the lives of CF patients in the Middle East

In today’s article we outline how MECFA works to improve the lives of CF patients in the Middle East through access to better health care.

MECFA begins working in a country through our members who are clinicians and allied health professionals working with CF from this region.

The first step is to evaluate each country and create a profile to determine the situation and what needs to be done to improve patient’s health outcomes.

Each country begins at level 1, 2 or 3 depending on their situation.

An evaluation is carried out through surveys and discussion with MECFA member clinicians to determine their level and the support we will provide.

Level 1: A MECFA member clinician who is treating CF and working in a government funded hospital.

It is ideal if the hospital is a university hospital with a pediatric pulmonology department. The clinician should have experience treating CF, have been trained in a country that follows US and EU standards of CF Care and actively attend international conferences, workshops and if possible, published in CF. It is helpful if the clinician has a relationship with the Ministry of Health and with the hospital administration.

Level 1 Support

The MECFA team assists members to form a committee to include MoH/Drug Administration, clinicians, a family/pt. representative, hospital administration and MECFA advocacy committee. We then assist members in forming a CF team to include Pulmonologist, nurse, physio, nutritionist, microbiologist, and psychotherapist. In addition, we

work with members and hospital administration to set up inpatient and outpatient rooms within the pulmonology department of the hospital. Finally, MECFA donates diagnostic equipment and set up basic patient data collection as well as providing CF diagnostic education and technical training to clinicians and technicians.

Level 2: Diagnostics are available and provided freely to patients.

A MECFA member clinicians and CF team exists and is working closely with the hospital administration to improve CF care. The CF team is connected to the Ministry of Health and advocating on behalf of patients. A basic pt. data collection system in place.

Level 2 Support

MECFA will support the formation of a CF committee to include MoH, Clinicians, Pt/family, hospital admin, and Pharmaceutical arm of the MoH. We match the CF center with a MECFA training Center (at this stage, the training center can begin virtual training to establish a center, provide basic guidance) and support existing/developing local family network/group to assist with lobbying.

We then implement the MECFA advocacy strategy and actively lobby for a short list of essential therapies and equipment. This includes sending members of the MECFA advocacy committee to open conversations with MoH to cover the basic therapies for patients.

*Enroll the country in the MECFA Access Program

Level 3 Diagnostics are available and provided freely to patients.

A MECFA member clinician and CF team exists and is working closely with the hospital administration to improve CF care. The team is connected to the Ministry of Health and advocating on behalf of patients. There is a basic pt. data collection system in place. The center has been matched with a MECFA training center and begun basic training in preparation for Quality Improvement Program (based on MAMI program). At this level, patients have access to the MECFA short list of recommended drugs and equipment and care is covered by state or private insurance.

Level 3 Support

We enroll the team in a 2-year QI training and support team members to attend MECFA annual conference (present abstracts, speaker, and attendee). Additionally, MECFA funds QI research projects resulting from the QI training program. Our team supports patient and family organization through social media awareness and fundraising campaigns. There is also advocate on behalf of patients and families to ensure continued access to free care and essential therapies.