Website aims to connect blood donors and thalassamia patients with SMS registraton

A website launched this month will enable thalassaemia patients in the Maldives to find blood donors by sending a single text message, according to developers of the service.

With almost 18 percent of the population registered as carriers, the Maldives has the world’s highest incidence of the crippling genetic blood disorder.  Patients diagnosed with thalassaemia major must receive regular blood transfusions and treatment throughout their life.

Currently, over 500 patients with the condition are registered  at the National Thalassaemia Centre (NTC) in Male’.

According to the developers of  “Blood Donor Online Database”, the new system will ease the burden of thalassamia patients and their families by helping to find willing blood donors quickly and easily.

“By using this unique online directory, available blood donors can be identified quickly and contacted via a simple SMS, saving valuable time for you and your loved ones. Also a simple SMS would enable to register blood donors,” local IT firm, Shell Tech claimed on their website.

The system has been designed in collaboration with national telecom service provider Dhiraagu, which supports the automated SMS system linked to the database website.

Blood donors can register with the database by sending an SMS to 678 with the keyword “REG” and their Identity Card (ID) number.

Meanwhile, thalassaemia patients or their relatives seeking donors can type the allocated atoll code and island name (location), along with their required blood group and send via SMS to 678.  This text will be sent to a donor with the needed blood type.

Listed blood donors names will be automatically forwarded to the blood seekers, once registered and will be available for searching on the website.

Each SMS sent through the blood donor service, will be charged at Rf1 (US$0.60).

According to the Chief Executive of Dhiraagu Ismail Rasheed, all revenue raised through the SMS charges will be donated to the NGO, Maldives Thalassaemia Society (MTS).

He added that the company supported the development  of the online blood donor database as part of their Corporate Social Responsibility (CSR) program.

The other telecom service provider in the country, Wataniya, will also soon join the initiative allowing its customers to register to the database, Shelltech company noted.

Meanwhile, Thalassaemia Society welcomed the initiative as a “good beginning”, and urged potential donors to register as soon as possible.

On World Thalassaemia Day, 8 May, this year, Minivan News reported on the current challenges facing the country’s thalassaemia patients, as well as inequalities in the services available for them in Male’ and the wider atolls.

The Maldivian Thalassaemia Society contended that authorities have “largely neglected” the rights of local patients, who face numerous challenges to stay alive, especially those in the Maldives’ smaller inhabited islands.

“We see huge inequalities in the provision of medical treatments and services to thalassaemia patients living in the islands and services available from the centre established by the government in Male.”

Even though the government has arranged for blood transfusions on the islands, the MTS claimed that for various reasons, the service and necessary medications are unavailable, forcing patients to cover the high costs of travelling to other islands or the capital in order to get blood transfusions.  These transfusions are often a matter of life or death for patients.

In response to multiple concerns raised by the group, the government has decided to revamp the system by joining the Nastional Thalassamia Center and the National Blood Transfusion Center to create the “Thalassaemia and Other Hemoglobinopathy Center” – which needs to established under the Thalassamia Control Act.

Health Minister Dr. Ahmed Jamsheed told local media earlier this month that all necessary administration work had now been completed and the centre would soon start functioning. He said at the time that the utmost importance was being given to ensure Thalassaemia patients from the islands receive free health care.


Cabinet to merge thalassaemia services

At yesterday’s cabinet meeting, the decision was made to combine the services provided by the National Thalassaemia Centre and the Blood Transfusion Centre in a new body entitled the Maldivian Blood Services.

The government has yet to disclose further details about the proposed organisation.

Maldivians suffer the world’s highest rate of the blood disorder, with 18 percent of the population registered as carriers. The illness causes severe anaemia in sufferers and requires regular blood transfusions.

On World Thalassaemia Day, May 8, the Maldivian Thalassaemia Society (MTS) released a statement criticising the unequal treatments available to Thalassaemia sufferers who live outside of the capital, Male’, where the National Thalassaemia Centre currently provides transfusions.


Service inequalities plague thalassaemia sufferers

Eighteen years ago when Aishath Hassan got pregnant with her third child, little did she know of how her life was about to be completely changed. Six months after the birth of her daughter, Aishath became extremely concerned about the worsening health conditions of her baby.

Worried, she took the baby to a doctor, where she heard the word “Thalassaemia” for the first time.

“The doctor told me my daughter was thalassaemic. Till that day, I did not know what it was or how it had happened. But from that day onwards, my life completely changed,” Aishath, now 45, recollected.

With almost 18 percent of the population registered as carriers, Maldives has the world’s highest incidence of the crippling genetic blood disorder. For those like Aishath’s daughter with Beta Thalassaemia Major, the disease causes severe anaemia and requires lifelong blood transfusions and treatment.

“Screening for thalassaemia, as well as treatment of thalassaemics, is costly but at the moment it’s free in the Maldives. Thalassaemic children require continuous and regular care and treatment to stay alive,” wrote Dr Ibrahim Mustafa, PhD in Pathology and Laboratory Medicine, an important contributor of thalassaemia projects in his blog in January 2012.

“They require monthly transfusions and treatment with the drug Desferrioxamine, injected five times a week. The annual cost of treatment exceeds US$6,000. At present only, Bone Marrow Transplant (BMT) ensures permanent cure for Thalassaemics. But the cost of this treatment ranks between US$30,000 and US$50,000. Due to the low income of average people, this costly treatment BMT cannot be afforded by many families,” he noted.

Currently, 535 patients with thalassaemia major are registered and receive regular blood transfusions at the National Thalassaemia Center (NTC) in the capital Male’. Aishath’s daughter is among them.

The pair visit the centre every two weeks, despite the costly and exhausting four-hour journey from their home island of Thodoo in Alif Alif Atoll.

“It is very tiring and every trip nearly cost nearly Rf3000 as travelling and accommodation prices. We don’t have any other choice,” Aisthath noted.

“On the islands, sometimes blood and medicines such as Desferal (a drug used to moderate iron in the blood of transfused patients) is not available while vital medical treatments charge money. But once we came [to the NTC]almost everything is free. Blood is guaranteed. All services and medicines are available,” she further explained.

Inequalities and financial burdens

The inequalities in the services available to the thalassamia patients in Male’ and    on other islands was noted as a key problem in the statement released by  Maldivian Thalassaemia Society (MTS) on the occasion of World Thalassaemia  Day, marked on May 8.

While the world marks thalassaemia day with the motto “Patients Rights Revisited”, MTS contended that today authorities have “largely neglected” the rights of thalassaemia patients who face numerous challenges to stay alive, especially those in small inhabited islands of the Maldives.

The statement read: “We see huge inequalities in the provision of medical treatments and services to thalassaemia patients living in the islands and services available from the centre established by the government in Male.”

Even though the government has arranged for blood transfusions on the islands, MTS says that for various reasons the service and necessary medications are unavailable, forcing patients to bear high costs of travelling to other nearby islands or to the capital in order to get blood transfusions, without which they will die.

Meanwhile, Program Manager of the Maldives Thalassaemia Society, Imaan Mohamed, noted that the organisation was receiving numerous complaints regarding problems receiving services under the national health insurance scheme, Aasandha.

“We have received several complaints from thalassaemia patients and their parents that hospitals and health centres are charging for medical treatments, including blood transfusions, because they have reached the outpatient coverage limit. But, we were  informed during the scheme’s inception that thalassaemia patients would not have the Rf10,000 limit allocated for outpatient services,” Imaan explained.

“So we are discussing with relevant authorities about how to solve this problem, but we have not received a good response,” she added.

Aishath meanwhile called for authorities to make mandatory blood donor tests and other associated treatments free.

“Around Rf1000 is required to test a blood donor,” she said. “That money is deducted from their Aashandha account or we have to pay the donor. So it will be a huge relief if the tests are available for free,” she noted.

The Aasandha Office was not responding at time of press.

“More awareness”

With contributions from the government and NGOs across the country, thalassaemia awareness increased dramatically after 1992 and the word became a household name.

The intitiatives included the Thalassaemia Prevention Program, comprising health education, population screening and genetic counseling  by the Society for Health Education (SHE), while in 1993 the National Thalassaemia Program was  formulated and in December 1994 the National Thalassaemia Centre  inaugurated with a 17 bed ward, blood bank facilities and a diagnostic laboratory service.

Of those screened for thalassemia in 1999, 21.9 percent were carriers, while this rate fell to 18.3 percent in the same period while the number of new thalasaemia cases decreased by almost 50 percent from 43 in 1999, to 24 in 2003.

However, Imaan from the Maldives Thalassaemia Society warned that with “no existing comprehensive national  program” to address thalassaemia in the Maldives, the success rates may not be maintained in the future.

“In the past five years, 30 new cases of thalassaemica  have been registered while earlier statistics show that the figure was lower,” Imaan observed.

She noted that the Health Ministry’s National Thalassaemia Program, which ended in 2006, included important elements such as population screening, thalassaemia education, prenatal diagnosis and medical termination of pregnancies of foetuses with thalassemia major.

“It is very upsetting that we don’t have a national program now. People need these services and more awareness programs need to be conducted for prevention of Thalassaemia,” Imaan concluded.


Dhoni captain appeals for help to save life of thalassaemic daughter

“This could be my one chance to save the life of my daughter.”

When Mohamed Faiz received a letter offering his eight year old thalassaemic daughter a life-saving bone marrow transplant in Italy, departing on October 25, he was ecstatic.

“It was amazing, I was surprised and thought we would never get such an opportunity,” he tells Minivan News.

But their dream was shattered when he learned that while the Italian regional government of Abruzzo would bear the cost of the operations, and the Associazione Genitori Bambini Emopatici (AGBE) would arrange accommodation, the offer was conditional on his paying food and all other living expenses for five months – a cost they estimated at US$4500 (Rf57,375).

The 46 year-old father of four has spent most his life trying to extend the life of the two of his children who suffer from thalassaemia, a crippling genetic disorder that affects the body’s ability to produce red blood cells.

The Maldives has the highest incidence of the disease in the world, and for those like eight year old Fathimath Shama with Beta Thalassaemia Major, the disease causes severe anemia and requires lifelong treatment.

According to the National Thalassaemia Centre of Maldives, Abdul Gafoor, there were more than 690 thalassaemia patients registered in the Maldives last year. Since then, 30 have fully recovered while 150 have passed away.

Separated for his wife and working as a dhoni captain, Faiz spends most of his monthly salary of Rf6500 (US$505) on his two children.

“I wasn’t able to save anything,” he says. “I spent Rf4000-5000 a month on the kids’ blood transfusions, Desferal (a drug used to moderate iron in the blood of transfused patients) and other kid’s stuff, mostly medical treatments essential for their wellbeing.”

The relentless financial pressure of caring for children with thalassaemia makes for “a hard life” he says.

“You have to struggle, and most of your time is spent thinking about the future of the poor kids,’’ Faiz explains. “It’s hard to handle the situation when you have to afford the same treatments every month, without any idea of when you might find a better way.’’

Faiz received word through the government one and a half months ago that Fathimath had been selected for a bone marrow transplant in Italy, a risky procedure with many possible complications and reserved for patients with life-threatening disease, but nonetheless offering a chance of recovery.

His other daughter, aged 18, needs to travel to Italy as well to serve as the bone marrow donor; according to the National Thalassaemia Centre of Maldives, only 10 patients in the Maldives have a donor sibling who matches closely enough to attempt a bone marrow transplant.

But despite beating those odds, and so close to a cure, Faiz has despaired of being able to afford the high cost of living in Italy for five months.

“The organisation will bear the cost of the operation, accommodation and tickets, but we were asked to cover all the other expenses,’’ Faiz says, awkwardly. “We have to stay there five months at least.”

He now believes the offer is the only hope his daughter may fully recover, and increasingly desperate, has resigned from his job to focus full-time on raising money for the trip.

“For an ordinary person like me, this is a once-in-a-lifetime opportunity,” Faiz says. “I would despair with the world if missed this only chance, the only hope to save my daughter. I would have to live knowing I missed a miraculous opportunity to make my daughter normal, and give her a real chance at life.”

Mohamed Faiz can be contacted on (+960) 773 4042, or (+960) 762 7899. Faiz’s Bank of Maldives account number is 7701-153358-101.