The existing scenario of haemophilia care in Canada and China - A review

Abstract

Hemophilia is an X-linked recessive genetic disorder which affects approximately 400,000 people globally. Differing healthcare reimbursement systems, budgetary constraints and geographical and cultural factors make it difficult for any country to fully deliver ideal care. Although developed countries have sufficient treatment products available, they are burdened by the higher expectation of outcomes, coupled with insufficient supportive care to monitor adherence and outcomes and to implement regular follow-up. In contrast, developing regions may not have ready access to factor replacement, but have developed excellent physiotherapy and rehabilitation programs. Although there are multiple studies that have attempted to assess country-specific variations in hemophilia care, very few compare hemophilia care between economically unequal countries and the challenges in achieving optimal hemophilia care. This literature review tries to bridge this gap and throws light on the country-specific differences in epidemiology, standard of hemophilia care and challenges faced in Canada and China. Data sources resulted in 20 studies (11 from Canada and 9 from China), which were reviewed. In a developed country, the main advantages are: the early treatment of bleeding episodes and the presence of a specialized interdisciplinary and comprehensive treatment concept. This is not the case in most developing countries, where the government does not have the resources to buy the necessary quantities of coagulation factors in the face of more urgent health priorities and hardly a few patients can afford to pay for their own treatment, even the on-demand home therapy.

Treatment Adherence and Health-Related Quality of Life in Patients with Hemophilia in Hong Kong

“…For example, the mean HRQoL impairment score (45.7 points) in our study was lower than the reported estimate of 62.7 in a recent large-scale study involving 875 patients with hemophilia in China [ 29 ]. Although both studies were conducted on Chinese patients, HRQoL perception may be influenced by cultural and geographical differences, and disparities in healthcare settings, across China [ 29 , 39 , 40 ]. Although such comparisons should be interpreted cautiously owing to the small size of our study cohort, the differences in reported HRQoL may suggest there are disparities in hemophilia-related interventions, support systems and health policies across countries/regions.…”

Factor VIII replacement prophylaxis in patients with hemophilia A transitioning to adults: a systematic literature review

“…British Society for Hematology (BSH) guidelines recommend that adolescents and adults with severe hemophilia should be encouraged to continue regular prophylaxis, and the frequency and dose should be adjusted according to their bleeding phenotype and individual pharmacokinetic (PK) data [ 13 ]. In China, the WFH began its intervention in hemophilia care in 1993 and established the Hemophilia Treatment Center Collaborative Network of China (HTCCNC) consisting of 6 core hemophilia treatment centers (HTCs) in 2004 [ 3 , 14 ]. Now the number of HTCs has expanded to 115.…”

<p>Safety and Efficacy of Moroctocog Alfa (AF-CC) in Chinese Patients with Hemophilia A: Results of Two Open-Label Studies</p>

“…[4][5][6] Despite improvements in care over the last decade, management of hemophilia in China remains a challenge because of factors such as insufficient health care infrastructure, inadequate awareness and knowledge of the disease, high costs, lack of medical insurance for a majority of patients, and limited availability or access to factor replacement products. 2,[4][5][6][7][8][9] To mitigate treatment costs and limited access to resources, several studies led by the HTCCNC investigated the potential benefit of using lowdose prophylaxis to reduce the number of joint bleeding events and to improve quality of life. 3,9 Moroctocog alfa is a B-domain-deleted recombinant FVIII product manufactured using an albumin-free cell culture (AF-CC) process.…”

“… 1 The treatment of hemophilia in China has progressed, with contributions from the World Federation of Hemophilia (WFH) and the development of the Hemophilia Treatment Center Collaborative Network of China (HTCCNC). 2 In addition, pharmaceutical companies and non-governmental organizations have helped to build and improve hemophilia treatment centers. According to a 2019 report, the network includes 115 regional hospitals and has registered approximately 18,000 patients with hemophilia, including 16,083 patients with hemophilia A.…”