WORLD HEMOPHILIA DAY 17th April 2020
“6.9 million People worldwide have a bleeding disorder, 75 % of them do not know it!”
“Get+involved” – call to action for everyone – “Treatment for All”
PRESS RELEASE April 2020
Whether you are a patient, a family member or caregiver, a corporate partner, a volunteer, or a healthcare provider. We want to encourage you to help increase the awareness of inherited bleeding disorders and the need to access adequate care, everywhere in the world no matter where you live – “Get+involved”.
(Cape Town): Lets Change the World for ONE PERSON at a time and help reduce the pain, crippling, suffering and even premature death, of those living with a bleeding disorder. Join SAHF during the month of April and particularly April 17, World Haemophilia Day (WHD), to increase awareness of Haemophilia and other inherited bleeding disorders. This is a critical initiative with an ultimate goal of ensuring better diagnosis and access to care for those who have a rare bleeding disorder,
and yet remain undiagnosed and without treatment.
“We are a world-wide family, united through blood, working together to improve diagnosis and standards of care, supporting one another, and helping where the need arise. That is what family does for one another.” says Mr. Bradley Rayner, National Chairman and volunteer of the South African Hemophilia Foundation (SAHF).
This year’s theme, “Get+involved”, brings attention to the millions of people with Haemophilia or Von Willebrand Disease, who live with or know of someone living with a bleeding disorder.
WHD provides an opportunity to talk to family, friends, colleagues, caregivers and the community at large, to raise awareness and increase support for those living with an inherited bleeding disorder.
This year we have two hash tag awareness events to highlight bleeding disorders; viz;
1. Paint one fingernail red and post a selfie on your social media platform using
#CAUGHTREDHANDED #WHD #Get+involved in support of women with bleeding disorders @HaemophiliaSA
2. Take selfies in groups, individually, with pets, wearing a red tie, bowtie or scarf and post on your social media platform using #REDTIECHALLEGE #WHD #Get+involved in support of people with bleeding disorders @HaemophiliaSA
Looking forward: Advances in Care and Emerging treatment options
(CPT): “The Medical and Scientific Advisory Council (MASAC) fully supports and encourages Haemophilia research and clinical trials in South Africa. We are well aware of the high cost of treatment both financially and also with respect to quality of life, in people with Haemophilia. The current funding model in resource constraint countries like South Africa, limits the quantity of treatment products that patients with inhibitors might have access to. The ability of our patients to join clinical trials has allowed them to benefit from receiving free products during these trials as well as accessing longer acting/novel treatment products which ultimately improves their quality of life. The research and clinical trials not only helps to reduce the cost of the treatment products in the public sector, but increases academic awareness for the doctors and nurses involved. These academics are primary investigators in international multi-centre clinical trials, which are then published in high impact medical journals. This builds capacity in our country, provide new skills to health care workers and ultimately benefits our patients”, says Dr Anel van Zyl, MASAC Chairperson.
(Gauteng): “To date several gene therapy development programs for both haemophilia A and B are evolving. All these programs use hepatotropic adeno associated viral (AAV) vectors, to deliver the transgene in the liver which is then able to produce the missing clotting protein. The results of both FVIII and FIX gene therapy to date have been very encouraging with many patients successfully converting from severe (<1% clotting factor level) to moderate or mild phenotypes (2-50% clotting factor levels). Whilst the safety profile of gene therapy in adults has been acceptable so far, unexpected transaminitis has been observed in a number of study participants. To date gene therapy represent a dichotomy of knowns and unknowns. It is a matter of time before some of the unknowns are clearer”; says Prof Mahlangu, previous MASAC Chairperson and Clinical Haematologist at Wits and the NHLS in Johannesbug.
(Cape Town) For World Hemophilia Day 2020 and during the awareness month of April, the SAHF volunteers are mindful of Covid-19 and will be focusing on Radio, TV and social media platforms. Some awareness kiosks may be setup at the local Treatment Centers or other venues as identified to be responsible considering Covid-19.
“Bleeding disorders can be well managed if close to the knowledgeable network. Living a reclusive life and being uninformed is NOT the best option for the sufferer. #Get+involved says Bradley Rayner, a person who himself has severe Haemophilia A and impacted by life long bleeding with numerous joints that are damaged.
For more information please contact SAHF:
Mr Bradley Rayner +27 82 882 6420
Chairman of South African Haemophilia Foundation
Email : SAHFChairperson@haemophilia.org.za
Dr Anel van Zyl +27 82 372 8622
Medical and Scientific Advisory Council Chairman
Email : MASACChairperson@haemophilia.org.za
Mrs. Julie Malan +27 82 553 5891
SAHF National Administration
Sr Anne-Louise Cruickshank +27 82 553 5891
Medical and Scientific Advisory Council Secretary
Mr. Alex Stewart
+27 83 642 9092
About Haemophilia and other bleeding disorders
Haemophilia, Von Willebrand Disease (VWD), inherited platelet disorders, and other factor deficiencies are lifelong bleeding disorders characterized by bleeding symptoms.
People with Haemophilia and VWD do not have enough of a particular clotting factor, a protein in blood that controls bleeding, or else it does not work properly. The severity of a person’s bleeding disorder usually depends on the amount of clotting factor that is missing or not functioning.
People with Haemophilia can experience uncontrolled bleeding that can result from a seemingly minor injury.
Bleeding into joints and muscles causes severe pain, joint destruction and disability while bleeding into major organs, such as the brain, can cause death.
Quality of life and mortality of people with Haemophilia (PWH) has not improved as significantly in the developing world as in high income countries due to inadequate management of the disorder.
1 in 5 000 male births have Haemophilia. Women carriers are also refered to as Mild Haemophilics
1:1000 population have VWD. VWD occurs with equal frequency among men and women
About South African Haemophilia Foundation – www.haemophilia.org.za
1 To provide a fellowship for persons with Haemophilia and similar conditions, for their families and those concerned in their health and welfare.
2. To promote the interests of persons with Haemophilia and similar conditions
3. To strive to facilitate adequate treatment facilities and access to products for the treatment of Haemophilia at the best financial dispensation possible. To this end the Foundation will support the establishment of treatment centres that comply with the requirements of the World Federation of Haemophilia and the World Health Organisation, by facilitating training workshops for healthcare professional staff. The Foundation will support those centres workingbtowards this compliance.
4. To strive to maintain the level of medical expertise in the treatment centres by supporting the training of medical staff through attendance at international conferences, workshops and visits to comprehensive treatment centres abroad.
About the World Federation of Hemophilia – www.wfh.org
For 50 years, the World Federation of Hemophilia (WFH), an international not-for-profit organization, has worked to improve the lives of people with hemophilia and other inherited bleeding disorders. Established in 1963, it is a global network of patient organizations in 140 countries and has official recognition from the World Health Organization.