UPDATE: PNH patient in Poland

Konrad Krzeminski is a 20-year-old PNH patient living in Poland who requires urgent access to the life-saving treatment, eculizumab (eculizumab). Konrad’s relatives in France discovered the Canadian Association of PNH Patients’ website and reached out, looking for support. Since then, PNHCA has been providing advocacy support to Konrad and his family in a variety of ways.

On August 3, 2016, Barry Katsof, founder and president of the Canadian Association of PNH Patients, sent an open letter to the Minister of Health in Poland on Konrad’s behalf, urging him to give Konrad access to eculizumab immediately. This letter can be read here.

PNHCA has also been working to share Konrad’s story and this letter with the media in Poland, to help spread awareness of this important issue. Additionally, PNHCA has engaged the opposition health critic in Poland, Alicja Chybicka, who is helping to fight for access to eculizumab on Konrad’s behalf.

Due to pressure in the media, the Polish government announced last week that eculizumab is now on the list of drugs to be funded, but the reimbursement process can take up to 180 days, and Konrad still does not have access to the treatment that he needs.

As a result, a press release was issued on September 20, 2016 in Warsaw, Poland, to once again urge the government to provide Konrad with immediate access to eculizumab in order to save his life. This press release is available in both English and Polish, and can be read by clicking on the following links.