"One tablet, for example, hydroxyurea, costs at Sh50 and, according to doctors' prescriptions, you are supposed to take two tablets a day. When multiplied by 7 days a week, I tell you that's very expensive keeping in mind there are other drugs to buy," he says.
"The condition is indeed a big problem, especially to poor households, because the patients need regular check-ups, alongside the expensive drugs," Dancan says. "This is why many SCD patients are urging the government and other stakeholders to make it easier for them to access the drug."
Indeed, according to Vincent Owino, a medical doctor, it takes Sh3,000 - 3,500 a month to put a patient on medication and that is beyond the reach of most vulnerable families.
Dancun says that in addition to providing free or subsidised drugs, the government should create awareness about the disease to eliminate the myths and stigma associated with it.
"Society should take this condition as a genetic one . The perennial myths and misconceptions surrounding the disease should be done away with. Also, let fellow patients follow the doctors' rules,.They should stick to drugs and avoid possible triggers and they need to accept they are suffering after they are positively diagnosed. Let us support people living with sickle cell disease so that, in future, we can have warriors like me," Dancan says.
Change needed
Dancan urges the government to create more SCD clinics, especially in the prone areas like Coastal, Nyanza and Western regions.
"You will find that there are few SCD clinics in these counties, and where they are available, not enough has been done to educate and sensitise the staff in the diagnosis and care of patients," Dancan says.
CSCF Chairperson Ms Ogweno says that, in order to silence this genetic condition, genetic counseling to couples who are about to get married should be done and health facilities should be equipped in order to manage SCD.
"Healthcare workers should also be regularly trained on new trends of managing it and newborn screening should be availed to all public facilities," she says.
Novartis's Mr Adamjee says that the establishment of facilities with relevant experts such as hemato-oncologists is vital and capacity building of multidisciplinary teams involved in the care of SCD patients in endemic areas is also essential.
"Setting up robust referral networks that can link health facilities to Sickle Cell Disease Centers of Excellence is crucial in ensuring that patients receive appropriate care, and education of the public to reduce stigma around sickle cell disease is necessary for the provision of adequate support for patients and their families," he says.
Dancan says that despite the challenges he has been facing, he felt inspired to stand up for many people living with SCD by creating awareness using various foundations where he is a member and advocate. These foundations include King Walubokho Foundation (KWF), Bungoma Sickle Cell Foundation, Warrar Shujaaz, and Sickle Cell Awareness Foundation (SCAF) Kenya.
Work to do
"I have had the chance to spread awareness on the disease and mentor others on how to take care of themselves while living with sickle cell disease," Duncan says. He adds that the organisations also conduct hospital and community visits where they demystified myths around this genetic condition.
"We coach and encourage patients suffering the same condition that, this is not the end of life. I'm 22 years now and I'm not going anywhere anytime soon. The main thing one can do to is to reduce the chances of experiencing painful episodes (sickle cell crises) by avoiding possible triggers. Drink plenty of fluids, wear warm clothing and avoid sudden temperature changes such as swimming in the cold," Dancan says.
"I also ensure I include all food groups in every meal even though it's sometimes expensive to maintain, keeping in mind I'm still a student," he says.
"What I can say is that having this genetic condition is not a death sentence. Let patients live normal life. I have passed through all these challenges but I am still alive and strong. My education and career are on track. I am a good writer and I do media production. If I had given up from the early days, I would be nowhere. I am proud to be known as an SCD warrior," Dancan says.