RIYADH — The Saudi Society of Hemophilia (Nozaf), a nonprofit organization under the supervision of the Ministry of Labor and Social Development, held a workshop to further promote the patient care, education and awareness among the population about hemophilia and help to establish the best care for patients with bleeding disorders. Organized by the leading healthcare company Roche KSA, the full day seminar last April 7 strived to provide psychological, social, health and financial support for patients suffering from hemophilia and build a partnership with associations and governmental institutions and others to achieve its goals. The “Power of Patients Advocacy Workshop” has been conducted by Francois Meurgey, Senior Associate at Management Centre Europe (MCE).

General Manager of Roche Products Saudi Arabia Dr. Mohamed Elghareeb said: “Patients are now much more empowered than ever before. Patient advocacy groups have a key role in helping patients and their families understand their rights and responsibilities and in assisting them in navigating the healthcare experience. To support this and reinforce the central value of patient advocacy groups in healthcare, Roche supported this important patient-focused workshop which aims to build capabilities and leadership of those groups.”

President of Nozaf, Dr Mohammed Alshahrani, a consultant, Pediatric Hematology/Oncology and B.M.T at Prince Sultan Military Medical City Riyadh, said Nozaf “aims to achieve better quality of life for patients with hemophilia.”

Hence “it is very important to work together with all care providers and health system in order to understand and facilitates all the difficulties associated with the disease.”

Moreover, Dr. Alshahrani noted the challenges with regard to hemophilia patients associations, such as equal access care and factors availability to all hemophilic patients. In addition, compliance and continuity of prophylaxis factors and difficulty of IV access.

He moreover said understanding the disease needs the interaction between policymakers, the medical world, the patient organizations and pharmaceutical companies as this would lead to understanding the magnitude (of the disease). Besides, “it is important to introduce and adhere to the factor replacement and close follow up of patients for risk of inhibitor.”

The vice president of Nozaf, Dr. Tarek Owaidah, a consultant hematologist at the Department of Pathology and Laboratory Medicine, KFSH-RC, stressed that the organization helps to establish the best care for patients with bleeding disorders.

He said Nozaf has established the first private clinic supported by charity and managed to help patients without medical care coverage through collaboration with charity and pharmaceutical companies. During the short period of their establishment, Nozaf has conducted workshops for patients and caregivers plus treating physicians to enhance the knowledge and treatment of patients with hemophilia.

As to the challenges with regard to hemophilia patients associations, Dr. Owaidah said “the main challenge is its ability to maintain a fund for patient and education support and improvement in the community.” Also “a new society. It has a lot of challenges that may compromise its intention to promote as a patient organization with the community.”

“The other challenge is to establish registries to have a fully documented data about the actual numbers of patients with bleeding disorders generally and hemophilia especially.”

Asked about the interaction between policymakers, the medical world, the patient organizations and pharmaceutical companies, he said “the collaboration is toward the best management of patient where pharmaceutical companies updates on the new treatment modalities as well as to help by funding some activities of patients plus funding patients with medications in certain cases.”

On the future role of patient’s organizations in shaping the healthcare system, Dr. Owaidah said “I think in the future, we hope that PAGs can gain from all these activities and lead the organization. Medical professionals will be in the back seats to support and help patients who will lead the PAGs.” — SG