A mother comforts her young daughter while receiving a blood transfusion, the only lifeline for thalassaemia sufferers.

Photo by Elena Sánchez

Thalassaemic children must receive monthly blood transfusions, each eight hours long, costing upwards of $5000 per child per year.

Photo by Elena Sánchez

Over the last three decades the Maldives has been struggling against a disease that used to be unknown there: thalassaemia, an inherited form of anemia whereby the blood cells are unable to carry a sufficient supply of oxygen for the body’s needs. As more and more Maldivian children are born with the disease (now 42 per year on average, and rising), the nation is having to confront a public health issue it is little equipped to deal with.

No one knows how the disease arrived in the islands. The first cases were reported in the 1970’s, and since then numbers of thalassaemic children have been rising steadily. Experts speculate that it may have arrived through some combination of natural genetic mutation and contact with carriers from other South Asian nations. The remoteness of many islands has caused the disease to multiply unprecedentedly fast: it is estimated that 1 in 5 Maldivans is now a carrier and is in danger, if they have children with another carrier, of producing a child with the condition.

But now the Society for Health Education (SHE), a national NGO promoting family wellbeing, is coming to the rescue. Formed in 1988 by First Lady Nasreena Ibrahim and three woman friends, its stated mission is to increase health awareness, and in the 14 years since its inception it has grown to operate on 71 islands in 11 atolls, working, among other services, to screen people for the thalassaemia gene.

The First Lady says SHE began “because we felt it would be useful if people were more aware of health concerns through education, prevention being better than cure.” Thalassaemia has become an important part of its mission: the organization screens couples planning to marry to check that they are not both carriers – an increasingly necessary service since as much as 18 percent of the population exhibits traits that could give raise to the disease. “We started with health counseling,” Madam Nasreena says, “but we realized thalassaemia was such a critical health concern that we dedicate most of our efforts to it.”

The Society’s various efforts have contributed to the recognition of thalassaemia as a matter of critical importance to families and island communities as well as the nation as a whole. “A lot of our children are born with the disorder and without the proper treatment they will not live beyond three to four years,” says Dr. Naila Firdous, also a founder member of SHE. Its greatest costs are emotional, both when children are born thalassaemic, and when couples have to change their reproductive behavior after diagnosis as carriers.

Diagnosis and treatment
Couples can be tested when the woman is pregnant, and if the baby is affected have the right to a medical termination of their pregnancy. Achieving that right took much lobbying on the organization’s part: although Madam Nasreena says that Islamic law allows for abortion up to four months into pregnancy, if the mother’s or child’s life is in danger, the Maldivian government forbade it. But after many demands from SHE, officials looked at precedents in other Islamic countries, and in 1999 the Higher Islamic Council decided to allow for termination in thalassaemia cases within the 120 days timeframe if diagnosis is confirmed.

The only true solution discovered so far is prenatal diagnosis. “Unfortunately at the moment we do not have a prenatal diagnosis lab,” explains Madam Nasreena, “we have to send them to nearby countries.” The organization has built a laboratory to test for the gene in potential adult carriers, however, and mobile health teams have screened 60,000 adolescents across all 199 inhabited islands.

At present the Maldives have 500 children diagnosed and receiving treatment. “In distant islands there could be a quite a few who are not diagnosed and who die because treatment cannot be started,” says Madam Nasreena. And the costs are high. Treatment consists of monthly blood transfusions that add up to more than 5,000 dollars a year – a difficult feat to accomplish among low-income families in remote islands without hospitals. Traveling to the capital or to larger islands for treatment often causes ruptures in family life. “Most of their parents have to travel with them, and they cannot keep their jobs. They have to be out of work two days of one week a month.”

The only cure is a bone marrow transplant, the basic cost of which is around 50,000 dollars. “Treatment is only a way to prolong life,” says Madam Nasreena. There is good news though, if the operation can be afforded: if the child is under the age of 7, a transplant has an 85- to 95-percent of success, and interrelation among island populations makes donors relatively easy to find.

Funding a cure
Madam Nasreena says that the Maldivian people have been generous in funding the organization. “The SHE program is functioning because of local donors,” she says. “We receive about 200,000 dollars per year, but that just provides for the screening, not for the care of the children.” The government is paying for their treatment, but like the children’s parents it cannot afford to pay for transplants. So far only six Maldivian patients have had them, having to travel to India and Thailand for the operations.

The First Lady is shy about using her status to raise awareness and money from international foundations or organizations. “I am not a very vocal person, I just want to work,” she says. Dr. Naila adds that although there are many UN assistance programs in the country, they don’t see the genetic disorder as a priority. “We have not been able to convince even UNICEF that this is a concern for our children,” she says.

Corporate philanthropy may be a more productive option, but is slow to start up. “We have been trying for a long time, but only in the last couple of years have we got some help,” Madam Nasreena explains. Unfortunately only 10 percent of the corporate sector is helping so far. In 1999 a scheme was launched whereby each resort island was asked to support one child’s treatment, but only a few did.

Some new initiatives are finally catching on, though. The Bank of Maldives has established a fund to try to help the children. “Out of all my 37 years of banking it’s probably one of the most satisfying things I have done-to assist in saving the lives of affected children,” says Keith Brown, General Manager and CEO of Bank of Maldives. He explains that he is in the process of writing to the wealthiest people in the capital in the hope that they will contribute. If the fund reaches five million rufiyaa (approximately $400,000) then the possibility of bone marrow transplants will be in sight on an ongoing basis from the income that will be generated from the capital sum.

The overall human cost of the disease is huge, Dr. Naila says. “It is not only a question of one in five being a carrier, the question is choosing your partner, going for prenatal screening, discussing the options. And the emotional impact for couples and for the family is so great, because the other children are affected, the sick child gets all the attention and they do not get as much as quality time from their parents.”

Maldivans are helping with the problem in the most literal of ways, however, by becoming blood donors. “We have to get blood donors, because we do not have a blood bank,” says Madam Nasreena. “Each child has its own five or six donors that donate blood for them.”

Dr. Naila stresses that inroads are being made in some areas, such as public awareness. “If you get in a taxi and you ask about thalassaemia, they know. We visit every school once a year, we talk about it and we offer screening. Then comes the individual counseling: what does it mean to be a carrier, a mother.”

The success of SHE indicates that the Maldives’ struggle against the disease will not be a losing battle. Already the organization’s success in promoting health issues throughout the islands has led to its recognition with international awards from the World Health Organization and the Commonwealth’s health authority. Besides the immediate collaboration of government, NGO, the financial sector and families to save children’s lives, a feeling for charitable giving is coming to the islands, a sensibility that can only benefit future generations.