Access for everyone: Learning to live with haemophilia

As a child growing up in Jakarta with haemophilia in the 1990s, Deni faced enormous challenges. “Treatment for the disease was not widely available in Indonesia and I didn’t get any proper medication,” he recalls. A great deal has changed since then but there are still significant gaps in the treatment of bleeding disorders, which is why Deni, now 32, devotes much of his spare time to raising awareness of these life-changing diseases.

Changing preceptions

Since the 1997 Asian financial crisis ravaged its economy, Indonesia has transformed from one of the poorest countries to a middle-income nation that is projected to become the world’s fourth largest economy by 2045. As a result, Indonesia has been able to roll out an impressive universal healthcare programme in recent years, covering more than 80% of its population of 270 million people.

Nevertheless, gaps remain, with the diagnosis and treatment of haemophilia being one of them. A 2021 World Federation of Hemophilia report recorded a total of 2,797 people diagnosed with haemophilia in Indonesia. However, 90% of people with haemophilia in the country are estimated to remain undiagnosed.1

Geography plays a part. Indonesia sprawls over 17,000 islands and many patients live far from city hospitals. There is also a lack of understanding of haemophilia among patients, their relatives and even some healthcare providers.

Additionally, blood banks often struggle to maintain sufficient stocks of blood products, let alone the factor replacement products used to treat bleeding disorders. There are many reasons for this, including complex supply chains, logistics challenges and cultural factors across the country’s many ethnic groups, including a significant drop in donation during Ramadan.2

To address the challenges in haemophilia care, Octapharma and its local partner PT Satya Abadi Pharma work together to improve physicians’ awareness of the bleeding disorder through local engagement and educational initiatives.

“We attend the Indonesian Hemophilia Society’s Annual National Congress and support its campaigns,” says Kym Ching, Sales & Marketing Manager for Octapharma SEA. “By collaborating closely with local haemophilia and haematology societies, we are able to reach physicians and patients in the Indonesian provinces to promote disease awareness and help facilitate patient access to treatment.”

A difficult diagnosis

The first few months of Deni’s life were just like those of most children, filled with sleeping, nappy changes and bottle feeds. It wasn’t until he was 18 months old that he had his first muscle bleed and bruising on his legs. Learning to walk was hard and other bruises led to numerous trips to hospital. Luckily for Deni, his haemophilia was diagnosed early, but many other haemophilia patients in Indonesia are left with no diagnosis or inadequate care.

Haemophilia is a bleeding disorder in which the blood-clotting process does not work properly. As a result, people can bleed for longer than normal and can also bleed into joints, muscles or other parts of the body. Left untreated, haemophilia can lead to infection, arthritis or even the destruction of joints.

Recurrent bleeding into joints is one of the most severe consequences of this disease, as it reduces movement and causes both chronic pain and stiffness.

Finding support

When Deni was in elementary school, his mother tried her best to explain what the disease was, telling him that it was a blood disorder with no cure at that time. He remembers feeling like an outcast and was very sad and confused. His mother, however, continued to give him hope, and told him to be strong and patient. “When I wondered why God allowed me to have haemophilia or when the chronic illness left me exhausted and in pain, she was my rock,” he recalls.

During these years, Deni often had to miss school to go to hospital to get his treatments. “Living in an area where knowledge about haemophilia and its diagnosis are uncommon made getting proper care difficult,” he remembers.

Although Deni’s school knew about his condition and hospital visits, he felt ashamed and preferred not to tell his friends, saying only that he was sick. He always wore long socks to cover the bruises on his legs. It was only when he was in junior high school that he began to understand his illness and stopped hiding it. To his surprise, people around him were very supportive and cared about him.

“Haemophilia has taught me to be disciplined and responsible, of course,” admits Deni. “But so did my mother. She made me who I am today, and I am very grateful for that.”

Staying strong, living his life

Today, Deni works as a digital business manager in the music industry in Jakarta. Despite his haemophilia, which has caused several physical limitations and some damage to his joints, he is getting on with his life.

Since 2019, he has been treated with Octapharma’s human coagulation FVIII concentrate, taken regularly at the Gatot Soebroto Army Hospital in Jakarta. When on business trips, he self-infuses. “It gets a bit challenging on a business trip, but I’m always able to bring my medication with me.”

Today, Deni has a family of his own, and loves playing basketball and being with his young daughter. “When I use human coagulation factor VIII concentrate, it really supports my daily activities and I can do sports any time.” He has an extraordinary spirit which inspires others and he always lives his life enthusiastically, even in difficult times. “Haemophilia has taught me to be disciplined and responsible, of course,” admits Deni. “But so did my mother. She made me who I am today, and I am very grateful for that.”

References:

1. 2021 World Federation of Hemophilia report

2. Donor issues in Indonesia: A developing country in South East Asia – PubMed (nih.gov)