Country for PR: Hong Kong
Contributor: PR Newswire Asia (Hong Kong)
Tuesday, April 17 2018 - 18:00
AsiaNet
On World Hemophilia Day 2018, Shire Unites Communities in Asia Pacific and Advocates for 'Principles of Care'
SINGAPORE, Apr. 17, 2018 /PRNewswire-AsiaNet/ --

Shire plc (LSE: SHP, NASDAQ: SHPG), the global biotech leader in rare diseases, 
is marking World Hemophilia Day (https://www.wfh.org/en/whd) to drive greater 
awareness of hemophilia in Asia Pacific (APAC) and improve standards of care 
for people living with rare bleeding disorders. This year's theme is "Sharing 
Knowledge Makes Us Stronger" and in this spirit, Shire businesses across the 
region are hosting local community engagement events to stand united with 
patient communities and their caregivers.

To view the Multimedia News Release, please click: 
https://www.prnasia.com/mnr/whd_2018.shtml

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About World Hemophilia Day Infographics
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Principles of Hemophilia Care APAC Infographics 
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Photo-https://photos.prnasia.com/prnh/20180412/2103640-1-d
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

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
sung.lee@shire.com
+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

SOURCE: Shire
Translations

Vietnamese