The sandy tropical beaches in Mauritius are a sight to behold. The low-lying naked skies allow the long and brilliantly bright warm rays to pierce, though gently, to tourists and residents alike who adore the earnest weather. The small winding roads lead to one of my favourite seaside villages at the north of Mauritius known as Grand Baie.
Besides being a top tourist destination, a wave of a unique health advocacy stands out in Mauritius. All patients with severe haemophilia have access to free factor concentrate for the last five years to prevent and manage bleeds. Countries in sub Saharan Africa are envious of this milestone.
Jodarsen Arnachellum, 29, is from Mauritius and a beneficiary of a national policy that ensures that factor concentrate is available for free for all patients with bleeding disorders. He estimates that out of about 1.3 million people in Mauritius, there are about 130 persons with haemophilia.
He admits the programme has handed him a lifeline for his bleeding condition. He had been on episodic treatment for 25 years now and began using the free factor four years ago. He doesn’t take it for granted that the haemophilia medication is available to him for free, thanks to years of tireless advocacy. Living with a bleeding condition is hard enough and lacking crucial medicines can be frustrating, he says.
Jodarsen further appreciates the support from his family who have helped him manage the condition since he was a toddler.
“I have wonderful parents who have looked after me since birth. They have also been supportive to my younger brother who is currently studying at university and has also been diagnosed with severe haemophilia A. It has been very hectic and hard for my parents who constantly check on both of us to ensure that the haemophilia is well-managed,” said Jodarsen.
He gives more glowing tributes to his parents.
‘Without doubt my parents have walked with me. I am proud that I can take care of myself now,” added Jodarsen.
He was first diagnosed with haemophilia when he was only seven months old. He had been in hospital undergoing lots of tests and pricks and the doctors had almost given up on the young man. But young Jodarsen refused to give up!!! Whenever they took blood for tests, the site of injection would have tiny bumps under the skin that took long to heal.
He fought every day, impressed the nursing and medical team that they would strategically pass by his bedside every day for daily motivation.
He explains how this has changed his life.
“I am now on prophylaxis treatment for about two years now. This has enabled me to live a normal life since the frequency of bleeds have decreased drastically,” he said. Prophylaxis is the regular infusion of clotting factor concentrates to prevent bleeding. According to medical research, persons, especially children who have access to prophylaxis treatment have fewer bleeds and hence have healthier joints.
Kenya is lobbying for access to prophylaxis which is now the goal of treatment for people with severe hemophilia. This allows them to remain active and participate more fully in daily life without fever of internal bleeds and damage to joints.
According to Jodarsen, besides the reliance on the preventive treatment, he is also careful to ensure he doesn’t sustain bleeds. “The only option in case of serious bleeds remains getting admitted for treatment at hospital,’’ he says.
How did Mauritius fight for access to free factor concentrate?
“The Haemophilia Association of Mauritius was successful to lobby for free factors replacement therapy with the government through robust advocacy. We now have all children and severe patients on prophylaxis treatment. We have built a working relationship with the government pharmacy through our patient advocacy group which monitors the stock of factors and give recommendations on how to avoid a shortage of factors,” he said.
Whereas Jodarsen agrees that such milestones have not been achieved by sub-Saharan countries yet, he is optimistic that through concerted advocacy, governments can be convinced to provide factors for their patients with bleeding disorders.
In Mauritius, Haemophilia A is the commonest type. The establishment of the Haemophilia Association of Mauritius in 2008 as a patient advocacy group changed the phase and face of haemophilia diagnosis, treatment and management of haemophilia. Fully run by volunteers, the group is run by parents and patients with haemophilia who meet regularly to support each other and compare notes on how to improve the quality of life of persons with haemophilia in Mauritius.
How does the Haemophilia Association of Mauritius achieve this?
- Identify potential haemophilia carriers
- Support mothers of haemophilia patients
- Empower girls with haemophilia
But with all these glowing tributes and milestones that Mauritius has had, Jodarsen is not comfortable yet!! His advocacy voice has crossed the cool waters of the island nation in the Indian Ocean and joined hands with other young men in Africa to raise awareness on haemophilia and other bleeding disorders in Africa.
The youth and haemophilia
Jodarsen is one of the founding members of a continental interest group that is looking at ensuring that haemophilia awareness sweeps across Africa.
The aim of the Haemophilia Youth of Africa is to bring together young people with haemophilia and encourage them to live a ‘normal’ life despite having the bleeding condition. They also hope to empower the youth to lead haemophilia advocacy in Africa. Other ways include to help young people share treatment goals and prepare young people’s transition to adults’ treatment. The forum is also expected to develop skills and confidence in their own treatment.
The Haemophilia Youth of Africa comprises the following 8 inspirational young men;
- Jodarsen Pillay Arnachellum – Mauritius
- Carlos Odera Maube – Kenya
- Clerment Masoabi Sefojane – South Africa
- Retselisitsoe Webster Mahlaha – Lesotho
- Immanuel Brooklyn Mayiji – Namibia
- Michael Edem Attivor – Ghana
- Sylvester Agbodo Kodjo – Togo
- Farioli Kumbi-Ethiopia
With the support of Dr Ann Greist and Robs Harris family, Haemophilia Youth of Africa seeks to help the young people with haemophilia in Africa to understand their medication, manage pain and deal with missing out some of the demanding competitive sports. The young advocates are optimistic that sharing their stories will deal with self-rejection. The forum will also host fact-finding sessions and interactions with health experts to address myths and falsehood on haemophilia. For girls with haemophilia and other bleeding disorders, menstruation and other reproductive health issues will also be handled well.
Jodarsen’s parting shot summarises his continental call; We need to change bleeders’ lives! The young people are setting the pace!!!