On World Hemophilia Day 2018, Shire Unites Communities in Asia Pacific and Advocates for 'Principles of Care'

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At Red Dot Design Museum Singapore, the hemophilia community (patients/healthcare professionals), participated in a Gallery Walk led by three hematology experts from the Asia-Pacific Haemophilia Working Group (APHWG). The focus was on establishing region-specific principles of care and providing optimal hemophilia care programs by collaborating with multiple agencies in the region.

"For more than 70 years, Shire has had the privilege of working together with healthcare professionals, non-profit organizations and patients themselves on advances in care. We seek to develop patient-focused innovation to raise global standards of care and advance treatments to help improve outcomes for every person with hemophilia. We believe there's a better future for those affected by hemophilia and we're working every day to make that future a reality," said Peter Fang, Head of Asia Pacific at Shire.

Leading Hematology Experts Join Forces to Advocate for Better Care

Published in the February 2018 issue of the Haemophilia journal, the 'Principles of haemophilia care: The Asia-Pacific perspective' (https://onlinelibrary.wiley.com/doi/abs/10.1111/hae.13425?af=R) talked about 12 fundamental principles: ranging from education, training and relevant research; to diagnosis; prophylaxis; management of hemophilia with inhibitors; musculoskeletal outcomes; emergency care; comprehensive care; and nationwide patient registries, amongst others.

While these guidelines endorsed the overall principles of care framework outlined by the European Association for Haemophilia and Associated Disorders (EAHAD) and the World Federation of Hemophilia, the APAC guidelines took into account the highly varied healthcare systems as well as the socio-economic and cultural diversities with its combination of advanced and emerging economies that impact provision of such care. The APAC region is vast and accounts for over 50% of the world's population, yet approximately 75% of people with hemophilia around the world still receive inadequate treatment or have no access to treatment[1].

"With the goal of improving care for people with haemophilia in the region, the APHWG, representing all countries in the Asia Pacific region, undertook this task of defining the principles of haemophilia care adapted to regional realities and perspectives. We took into account differences in culture, resource availability and clinical practice across the region while recognizing the advances made in the field in the world. This therefore becomes our aspirational benchmark for services to be provided to patients with haemophilia and other inherited bleeding disorders in these countries with regard to diagnosis, replacement therapy and the management of complications specially inhibitors," said Dr. Alok Srivastava, Professor, Department of Haematology, Christian Medical College, Vellore, India.

Sharing Australian's example, Dr. Scott Dunkley, Senior Staff Specialist Haematologist, Royal Prince Alfred Hospital, Sydney, Australia said: "Patients with moderate or severe haemophilia have a disease where there is relentless spontaneous bleeding into their joints causing great suffering as well as progressive joint destruction, ultimately leaving them severely disabled. Fortunately adequate availability and administration of preventative (so called prophylactic) clotting factor replacement therapy changes the natural history of the bleeding disorder enabling a normal life and prevention of haemophilic joint damage. In addition it restores life expectancy to normal by the prevention of spontaneous intra-cerebral bleeding."

Optimal care of patients with haemophilia, and management of prophylactic factor replacement therapy, however is complex and requires a multidisciplinary team approach through a specialised HTC (haemophilia treatment centre) and includes psychosocial support. Dr. Scott Dunkley continued: "An important element of comprehensive care is the availability of an agreed upon treatment guideline and this is where the AP principles of care is so important, where a body of haemophilia specialist from the AP region have agreed upon a clear and achievable way forward based on evidenced based medicine and best practice. We hope, as has happened in other regions of the world, that the provision of these principles in Asia Pacific will lead to significant improvements in haemophilia care."

To meet the evolving needs of patients and healthcare systems, Shire is accelerating scientific research into new, innovative areas in rare hematology. Its pipeline continues to grow as the company looks to develop new ways to deliver optimal care to patients in the areas of personalized care, gene therapy, and other innovations. Additionally, with its partners, Shire is building a global environment in which novel treatments can reach those who need them, including funding patient support programs to improve access to therapy, developing evidence-based research approaches, and creating life-long educational programs.

"Shire has a broad global portfolio of 10 global products across nine indications for bleeding disorders[2]. The company builds on a legacy of important advances, beginning in 1939 with the creation of the first long-term blood storage container[3] and continuing to the present day with a software-based medical device to support physician dosing decisions,[4]" said Dr Timothy Low, Head of Medical Affairs Asia Pacific at Shire.

Shire Lights it Up RED!

Shire across APAC are celebrating World Hemophilia Day throughout the week of 17 April with a series of activities:

• Shire Australia is supporting Medicines X to launch 'Pharmacokinetics (PK) Xplained' -- using a real-life story to explain how testing, called Pharmacokinetics (or PK) can show exactly what an individual patient's clotting factor is doing in their body -- creating their personalised PK Curve. This allows doctors to tailor patient's treatment specifically for them, therefore avoiding bleeds as the clotting factor gets low.
• Shire Korea's Lunch and Learn Event "Tied in Red," where employees make knotted bracelets in red. Each employee will wear one bracelet throughout the week to show his/her commitment to the patients and the society fighting against hemophilia, and will also give one to his/her friend to raise awareness on the disease. The red tie is the official symbol of the bleeding disorders community in Korea.
• Shire Malaysia is supporting the launch of a new comic book at MPH Bookstores nationwide entitled "The Hemophilia Mythbusters" -- created by local artist Miao&Wafupafu for the Hemophilia Society of Malaysia. Available in English and Malay.
• Shire Thailand is piloting the 'Zero Bleeds' app (a secure digital logbook designed for hemophilia patients to record their bleed and infusion events and share it with their healthcare providers) at Ramathibodi Hospital and Phramongkutklao Hospital. Along with the National Health Security Office (NHSO) and National Hemophilia Foundation of Thailand (NHFT), Shire Thailand will be having an awareness booth as a sponsor of Ramathibodi Hospital's patient event.
• Shire Vietnam is supporting patient group events at Blood and Transfusion Hematology Hospital and on March 25 and at Thu Duc District Hospital on 14 April in Ho Chi Minh City.

About Hemophilia

Hemophilia is a rare bleeding disorder that causes longer-than-normal bleeding due to lack of proper clotting factor in the blood.[5],[6] It is estimated that more than 180,000 people worldwide are living with hemophilia.[7] Hemophilia A, the most common type, is caused by not enough clotting factor VIII (FVIII) and hemophilia B is caused by not enough clotting factor IX (FIX).[8],[9] The severity of hemophilia is determined by the amount of factor in the blood, with more severity associated with lower amounts of factor.[10] More than half of patients with hemophilia A have the severe form of the condition. Of the worldwide hemophilia patient population, an estimated 75 percent lack adequate treatment or access to treatment altogether.[11]

CONTACT:

Sung Lee

[email protected]

+65-8799-0365

www.shire.com

REFERENCES

[1] National Hemophilia Foundation. Fast facts. 2017. Available at https://www.hemophilia.org/About-Us/Fast-Facts.

[2] Shire. List of Shire Products. Available at: https://www.shire.com/products/product-list?t=%7bf4f1d259-99fc-4798-9fac-52e3e8706baa%7d.

[3] Wortham S, et al. Microaggregate Removal, and Leukocyte Reduction. Pall Medical. 2003. Jul;17(3):216-22.

[4] Shire global newsroom. https://www.shire.com/en/newsroom/2017/december/abhvp5.

[5] Orphanet. Rare disease registries in Europe. Orphanet Report Series: Rare Disease Collection, May 2017. Available at: http://www.orpha.net/orphacom/cahiers/docs/GB/Registries.pdf

[6] World Federation of Hemophilia. What is hemophilia? Available at: http://www.wfh.org/en/page.aspx?pid=646.

[7] World Federation of Hemophilia. Annual Global Survey 2016. October 2017. Available at: http://www1.wfh.org/publications/files/pdf-1690.pdf

[8] EMedicine Medscape. Hemophilia A, updated May 2, 2017. Available at: http://emedicine.medscape.com/article/779322-overview

[9] Patient.info. Haemophilia B (Factor IX Deficiency). 3 July 2014. Available at: https://patient.info/doctor/haemophilia-b-factor-ix-deficiency

[10] National Hemophilia Foundation. Hemophilia A. Available at: https://www.hemophilia.org/Bleeding-Disorders/Types-of-Bleeding-Disorders/Hemophilia-A

[11] National Hemophilia Foundation. Fast facts. 2017. Available at: https://www.hemophilia.org/About-Us/Fast-Facts

Video - https://cdn4.prnasia.com/002071/mnr/201804/whd/video.mp4

Caption: About World Hemophilia Day Infographics

Photo - https://photos.prnasia.com/prnh/20180412/2103640-1-a

Caption: About World Hemophilia Day Infographics

Photo - https://photos.prnasia.com/prnh/20180412/2103640-1-b

Caption: Principles of Hemophilia Care APAC Infographics

Photo - https://photos.prnasia.com/prnh/20180412/2103640-1-c

Caption: Stock image for media use 1

Photo - https://photos.prnasia.com/prnh/20180412/2103640-1-d

Caption: Speakers at the Red Dot Design Museum Singapore: Dr. Alok Srivastava, Dr. Scott Dunkley, Dr. Joyce Lam, Prof. Tien Sim Leng and Dr. Suraj Wilson

• ข่าว Hemophilia