POLAND

ASSOCIATION:

Polish Society Against CF

Polish Society Against Cystic Fibrosis (PTWM) is a countrywide organization gathering over 1100 members –CF patients and their families in Poland. The PTWM has been for over 24 years struggling to provide comprehensive support for CF patients and their families in Poland, including help in covering costs of treatment and rehabilitation, activities towards improvement of social integration and availability of education for CF patients.

The Society has been continuously conducting several projects focused on direct help to the CF patients, including charge-free rehabilitation devices rental, free telephone help-line, organization of conferences for the parents, psychological help groups, rehabilitation and nutrition workshops, publication of CF news magazine etc. The PTWM fights for better access to lung transplantations in Polish patients. In 2006 the PTWM found a private sponsor who covered costs of lung transplantations in 12 patients in the AKH Vienna Hospital. In 2010 the PTWM persuaded Polish National Health Fund to start reimburse costs of lung transplantations in foreign centres (so far 7 patients received state reimbursement, due to legal constraints one patient received financing from PTWM own sources).

The PTWM’s main goal is to change system of medical care standard of CF patients in Poland to bring it to the level comparable to those in the Western European countries. The PTWM has been collaborating with Polish CF Society, the doctors’ organization, in following activities:

- To implement appropriate sanitary regime in the CF centres (isolation of CF patients during hospitalization) by changing legal regulations pertaining sanitary requirements in CF hospital wards

- To introduce home intravenous antibiotic therapy, which so far has not been available in Poland, by implementing a drug programme

- To widen access to lung transplants in Polish patients (state reimbursement of the transplantations abroad and development of local CF lung transplant programme)

- To widen access to state-of-the art therapies in Poland