“All that I’m asking is for a better future for my son. I cannot accept that my son will become disabled. Why? When there is a treatment?” said Sabreen, mother of two children with haemophilia. 29 April 2014, Gaza Strip – On the occasion of World Haemophilia Day, the World Health Organization (WHO) launched a short video, "Struggling with haemophilia in the Gaza Strip", at an event in the Gaza Strip attended by more than 70 people including Ministry of Health senior staff and doctors, academics, staff from civil society and international nongovernmental organizations, representatives of private sector companies, university students, UNRWA staff, the media, patients and their families.
Discussion about hemophilia patients’ health and human rights followed the screening of the film, Gaza, 2014 Discussion about haemophilia patients’ health and human rights needs and recommendations followed the screening of the film, Gaza Strip, 2014 The video shows the suffering of 117 haemophilia patients due to the chronic drug shortages in the Gaza Strip, which includes the clotting factors needed by haemophilia patients.
Dr Abdel Nasser Soboh from WHO, Dr Mohamed Al Kashef from the Ministry of Health and Sabreen Humaid, mother of two children with haemophilia, spoke to the gathering about the suffering of this patient group, followed by screening of the film and discussion about haemophilia patients’ health and human rights needs, and recommendations for follow-up by the Ministry of Health, WHO, civil society, donors and patients.
A first priority for patients is for the Ministry of Health to have sufficient quantities of the necessary factor available so that the prophylactic protocol can be implemented to prevent disabilities. Secondly, it was proposed to establish a specialized centre where patients can receive holistic care including medical, psycho-social support and rehabilitation, which is accessible and affordable. Thirdly, there was consensus that raising awareness and reducing the stigma about haemophilia is needed, and finally, that networking with international associations would benefit patients and families by giving them the opportunity to exchange experiences about improving the quality of health.