CFW Update:

New CF Clinic in Georgia

In developed countries, people with CF are now living beyond 40 and enjoying fruitful active lives. Sadly, in developing countries like the former Soviet Republic of Georgia, most CF patients are dieing in childhood because they do not receive appropriate treatment, life sustaining medications or have access to CF specialized clinicians.

Because Cystic Fibrosis Worldwide (CFW) is dedicated to improving quality of life and life expectancy of people who suffer from CF in developing countries, members began working on a campaign to build a CF Clinic in Georgia. CFW worked with the CF Charity Foundation of Georgia and with other organizations to develop and construct a new CF Center.

A $93,000 grant from Wilde Ganzen-ICCO, headquartered in the Netherlands, allowed construction on the Georgian National CF Center to begin on April 12, 2004. Construction crews renovated an abandoned wing at the Children’s Republic Hospital in Tbilisi. Now the wing has nine brightly colored rooms with private baths. Each room has an adjoining room for parents and caregivers. Plus, the CF Clinic medical staff can provide additional medical services in a specialized physiotherapy room and laboratory. This facility has the potential to aid thousands of children suffering from CF throughout Georgia, Armenia and Azerbaijan and is the first CF Center of its kind in the region.

In May of 2004, CFW representatives and Charity Foundation of Georgia members met with officials to discuss the nature of CF care in Georgia. The First Lady of Georgia, Sandra Roelofs, and Deputy Minister of Health, Levan Jugeli, hosted brunch enabling the groups to openly discuss the clinic and its potential. In addition, the First Lady, formerly of the Netherlands, and her son donated an oil painting they created to be auctioned off at the CFW Annual Celebrity Golf Tournament in Etten Leur, Netherlands, October 22, 2004. She will also attend the Georgian National CF Center opening celebration on December 3, 2004.

After learning more about CF care, Deputy Minister of Health Jugeli, discussed the importance of CF care with the Georgian Health Department and plans to disseminate a CF awareness manual developed by the CF Charity Foundation, CFW and the World Health Organization (WHO) throughout the region. The manual will draw on information provided by WHO in their publications: “WHO Guidelines for the Diagnosis and Management of CF,” “Manual for CF Patients and Their Parents,” and “Implementation of CF in Developing Countries.” However, even more important than informational materials Georgian officials plan to budget state funds to financially support the clinic thus enabling the clinic to begin treating CF patients.

While there is great excitement over the new clinic, it is important to acknowledge the organizations that helped make this clinic a reality. Solvay Pharma has agreed to translate information manuals and treatment guides into local dialects to educate patients, parents and caregivers. The German Mucoviscidosis Association donated physiotherapy guides printed in Russian and offered financial support. Now new patients and their parents, will be able to learn about the proper medical and nutritional needs required in CF care.

Solvay Pharma (Russia) also donated a large supply of Creon—a necessary enzyme required to be taken by CF patients at each meal—to the CF Charity Foundation for free distribution to patients. This will enable patients to begin taking enzymes while also learning about proper nutrition at clinic.

US Cystic Fibrosis Foundation (CFF) president, Robert Beall, donated a Macroduct sweat testing machine and 1,000 test kits. As a result, patients will be able to undergo a sweat test. In addition, the CFF also donated Pulmonary Fitness Testing (PFT) equipment and supplies for CF Physiotherapy Center. Now physiotherapists will be able to measure patient’s lung capacity and doctors will be able to prescribe treatments.

Because there are no facilities to train the medical staff, Dr. Harry Heijerman, Director of the Adult Cystic Fibrosis Center at the HAGA Hospital, The Hague, The Netherlands and CFW plan to work with the Georgian CF clinical staff to develop a five year plan to operate and sustain the new clinic. CFW Project Manager, Christine Noke, will accompany Dr. Heijerman on an upcoming visit to Tbilisi in October to develop this plan.

In addition, with the financial support of the CFF and the Canadian Cystic Fibrosis Foundation, Maartje Schaap, a PhD student at the University of Maastricht in the Netherlands, will develop health-care infrastructure for the centers management.

Presently, CFW is working to provide hospital furnishings, equipment and supplies for the new center. The Counterpart Humanitarian Assistance Program (CHAP), funded by the U.S. State Department, provides medical and other special care needs for vulnerable people. CHAP will transport donated supplies from the USA to the Georgian National CF Center.

The clinic in Georgia is just the first step. The lessons learned from this pilot project will develop methods for strategic planning, essential to the development of future projects. This pilot project will enable CFW operate as an advocate, supporter and developer of CF care in other less fortunate countries.