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“I remember a boy called Nimal whom I took to see the film ‘Sooriya Arana’. He asked for icecream upon seeing the ice-cream truck, but I couldn’t buy him one since he had diabetes due to thalassaemia,” reminisced Dr.Deepika Wanarambe, a doctor who has seen the pain and trauma of thalassaemia patients at the Children’s Thalassaemia Ward of the Badulla General Hospital.

“She drew lovely pictures of her home and the hospital because she couldn’t go to school. Geethani even drew me while I helped her with her blood transfusions,” said the doctor with tears in her eyes. Sadly, Nimal died due to extreme diabetes when he was 12 years old (he had a twin brother who is normal) and Geethani died when she was 10 years due to arthritis. These children suffered from thalassaemia that affects the red blood cells because iron isn’t stored by the haemoglobin in the red blood cells, causing deformities and malfunctions in the victims’ body and bone development.

Such children are unfortunate to fall victim to the disease due to the ignorance of their parents who didn’t check their blood before they had children.

“The reason thalassaemia continues to affect our population is because we don’t have proper genetic counselling at our local hospitals,” said Dr.Rohana Dayaratne of the Poison Unit at the Colombo General Hospital.

He emphasized that every major hospital and dispensary should have a genetic counselling section to enlighten couples if they were to have children.

“Thalassaemia is a preventable disease, but if two thalassaemia carriers get married, they have a 25 percent chance of having a thalassaemia-affected child. So it is imperative that we counsel couples before they have children, otherwise they will suffer in the long run,” he said. The problem with general hospitals is that the out-patient department is so crowded that it is difficult for proper doctor-patient relationships to be formed.

With the goal to have a ‘Thalassaemia-Free Wayamba by 2020’, it is important not just for doctors to educate patients, but matchmakers and marriage brokers, the famous `kapuwa’, should emphasise that unless the couple check their blood to determine if they carry the thalassaemia gene, they shouldn’t marry.

“In matchmaking, they match the 21 `porondam’. Likewise, checking for the thalassaemia carrier gene should be considered as the 22nd `porondam’. This is vital,” said the doctor.

A main step in thalassaemia prevention is to inculcate it into the school curriculum because we should ingrain it in the youth to check their blood before they look for a partner. “We can’t prevent thalassaemia carriers from getting married, but we can educate them properly so that they are aware of thalassaemia”, he said. One solution is to stop marriage between close relatives as there’s more chance of the affected gene to occur in the same family circle.

National centre

Further enlightening the public about thalassaemia in Sri Lanka is Dr. Ashok Perera, the Doctor-in-Charge of the National Thalassaemia Centre (NTC), Kurunegala Teaching Hospital. He said that a colossal amount of Sri Lanka’s health budget goes just for treating thalassaemia. “At the moment, 5-7% of the total health budget goes for thalassaemia patients. About Rs. 400,000 is spent annually just for treatment to ensure that the patient lives,” said Dr. Perera.

Ever since the National Thalassaemia Centre opened in 2006, there have been many welfare activities for the patients which have benefited them immensely.

“We have done Cascade Screening where we checked the blood of the thalassaemia patients and have given them green and pink cards as certificates, to get married to others who will be tested as well,” said Dr. Perera. He added, “We have educated village leaders, Government Agents, Grama Niladaris, religious leaders and teachers on thalassaemia and have asked them to spread the message. We have also lectured youth at various institutions about thalassaemia.”

The NTC has received the support of key stakeholders like the Rotary Club of Athugalpura, the Lions Club of Kurunegala, Vicki and Vimaladarma Trust Fund and World Vision in this regard. “In addition to these organisations, those from the Provincial Health Ministry like Ashoka Wadigamangawa, E.A.H. Karunanayake, Dr. R.M.S.K. Rathnayaka and Dayananda Bandara have also helped greatly in this endeavour” said Dr.Perera. He added, “Dr.P.G.Mahipala and Dr.Shalika Peiris have steered thalassaemia programs and the Social Services Department has also supported the initiatives of the NTC.”

Welfare activities

The special welfare activities for thalassaemia patients include scholarship programs, leadership and personality development programs and vocational and pre-vocational training for those who have passed their O/Levels.

“The different aspects of helping thalassaemia patients is treatment where they use drugs to prevent the deadly consequences of thalassaemia, rehabilitation where the psychological effects of overcoming the disease are addressed and prevention when they marry normal people who aren’t carriers of thalassaemia,” said Dr.Perera.

With regard to the ethnicities of those suffering from the disease, it has been noted that the majority of the population affected by thalassaemia are the Sinhalese and Muslims, while Tamils are hardly affected.

Dr. Wanarambe said that during her term at the Badulla Hospital, there were only a few Tamil children and some Muslim children who were affected by thalassaemia. All the others were Sinhalese.

“The hardships faced by victims are many because they can’t afford to even come to the hospital to give the child a blood transfusion,” she said. She added, “It is an unfortunate sight because as much as we love them, if these children are not treated for thalassaemia, they won’t be able to fit into society because they don’t look normal.”

Dr.Shalika Peiris of the Ministry of Health said they train their staff and doctors continuously, for them to form an understanding with relatives of the thalassaemia patients. “We educate the relations of thalassaemia patients and advise them to tell everyone, including matchmakers, that they have thalassaemia running in the family because everyone keeps it a secret, this can result in them having a thalassaemia affected child,” she said.

So, if you are even thinking of starting a love affair, make sure you and your partner have been checked for the thalassaemia gene. Otherwise it may lead to a difficult family life in the future.

About 7,500 people in the country are affected by thalassaemia. A considerable percentage of this number are those residing in the Wayamba area.

Here are the statistics of patients admitted to the National Thalassaemia Centre, Kurunegala over the years:

Pix: Courtesy National Thalassaemia Centre

Creating awareness is key

The Deputy Director General of Public Services, Health Ministry Dr. P.G. Mahipala said, “Our strategy for thalassaemia prevention is based on teenage screening so that thalassaemia carriers can make a wise decision regarding their marriage”. He added, “There have been Cabinet papers formulated by the Health Minister, but no decision has been taken yet because a considerable amount of our budget goes to just treating a single thalassaemia patient.”

Since drugs are expensive, the cost of managing a thalassaemia patient would be over Rs. 300,000 per year.

“The number of thalassaemia patients should come down within a few years since the goal is to have a ‘Thalassaemia-free Wayamba by 2020’, but if we don’t educate thalassaemia carriers before they marry, then it’ll be the Government which will be paying for these patients, when we can utilize the money for something else”, said Dr. Mahipala. He commented, “One can’t tell thalassaemia carriers not to marry because it is their fundamental right, but we can counsel them.”

The doctor highlighted that at the moment, HPLC screening to determine a thalassaemia patient is only available at the Ragama Teaching Hospital but in the future, Badulla, Kurunegala and Anuradhapura General Hospitals will be providing such facilities.

“We have appointed medical officers for screening and genetic counselling and strengthened our thalassaemia educational programs by working with the Education Ministry to include it in the school curriculum”, said Dr.Mahipala.

According to the doctor, “In 2009, Rs. 25 million (of the health budget) has gone just for treating thalassaemia patients in Sri Lanka and in 2010 we have already allocated 20 million in expanding educational programs in not only areas where thalassaemia is high, but the Southern Province where there is a risk.”

Dr. Mahipala said that awareness through media and publicity is the key ingredient in getting the message across. “At one point, there were 100-150 new-born babies affected with thalassaemia every year in Sri Lanka.”

Together with the National Thalassaemia Centre, the Health Ministry is keen on establishing legislation that everyone should be checked for the gene. “Since the literacy rate in Sri Lanka is high, we are confident that through proper awareness campaigns, we can totally eliminate the disease.” (ND)

Matchmakers have a role to play

National centre

Welfare activities

Pix: Courtesy National Thalassaemia Centre