POP GOES THE WORLD By Jenny Ortuoste for Manila Standard-Today, 15 May 2014, Thursday
The silent killer
It is stealthy, deadly, and, unless diagnosed, a killer of babies and young children.
What’s worse is that it’s operating under the radar of most Filipinos who have never heard of this inborn blood disorder – thalassemia.
Last May 8, the Quezon City Health Department hosted the country’s ninth observance of World Thalassemia Day (WTD) at Quezon City Hall with patient support group Balikatang Thalassemia (Ba-Tha) and Novartis Healthcare Philippines.
Thalassemia (thal) is a genetic blood disorder caused when the body does not manufacture enough hemoglobin to make healthy red blood cells that carry oxygen to the body’s other cells. Because not enough oxygen is being delivered to the body’s cells, thal patients develop anemia, which causes them to feel weak, tired, and short of breath.
Thalassemia is hereditary, so perhaps the only form of prevention would be for potential parents who have it or suspect they may have it to undergo screening. While only one parent may pass on the illness, the risk of passing it on is increased if both parents have it.
Speaking at the WTD event, QC City Health Officer Antonieta V. Inumerable said with the training given to QC health workers in coordination with Ba-Tha, they are “now prepared to identify patients with thalassemia.”
There are two types of thalassemia – alpha- and beta-, referring to the type of hemoglobin affected – and three levels of severity – major, intermedia, and minor.
Some patients who have thal major require monthly transfusions of red blood cells for the rest of their lives. Patients may also suffer complications such as damage to the heart, liver, and other organs; high risk of diabetes; and iron overload.
Iron overload causes organ injury and death. The removal of excess iron is required with the use of chelating agents, either injectables or oral medicines, often taken daily.
The maintenance needs of a thal patient are expensive, averaging at around P20,000 per month for the chelating drugs, not including the cost of blood transfusions.
Dr. Inumerable said the QC Health Department has a voluntary blood donation drive that may help thal patients from that city who are transfusion-dependent.
Novartis, through its Oncology Access Program, provides underprivileged patients with Deferasirox, an iron-chelating agent.
What’s needed, said physician Liza Naranjo, Ba-Tha secretary, is a “national program, like those in Thailand and Indonesia,” that provides care and support for thal patients.
She added that public awareness programs are also essential for detection and diagnosis.
Programs that involve the general public can also channel financial and other forms of assistance to needy thal patients.
Thalassemia, Dr. Naranjo said, is often mistaken for anemia or poor nutrition. Some symptoms are paleness (pamumutla), weakness (panghihina), a yellow cast to the skin (paninilaw), poor appetite, stunted growth, and an enlarged spleen.
According to a 2007 presentation of Dr. Ma. Luz Uy del Rosario, thalassemia is the “most widespread genetic disease worldwide.” In 2006, there were 457 known suffers, with most of them (81 percent) in Luzon, with more beta-thal patients (49.8 percent) than alpha-thal (26.4 percent).
It is likely that the available statistics do not accurately reflect the actual number of patients in the Philippines because the illness is still “largely under-undiagnosed and underreported.”
She adds, “Although there are potential serious problems, many patients can live productive lives with proper care.”
Many of the thal patients who attended WTD were children. While facing a lifetime of dealing with their illness, they seemed cheerful enough with the outpouring of support and love from their parents and supporters.
Charles Valbuena, a 12-year-old beta-thal major patient, received his first transfusion at three months. Possessing the typical undergrown stature of a thal patient, he now undergoes a transfusion of two units of type-A+ every two weeks, and takes an oral chelating agent three times a day.
He is an honor student at a public school, and will be entering first year high school this June. Also a poet, Charles delivered, from memory, an original poem at WTD. One of the lines left many in the audience teary-eyed: “Ang sakit na ito’y huwag gawin sagabal, sa ating ambisyon at kinabukasan.”
For more information about thalassemia or how to help, contact Balikatang Thalassemia (http://www.ba-tha.org.ph and on Facebook) and the Thalassemia Center of the Philippines at the Fe del Mundo Medical Center (firstname.lastname@example.org, tel. (02)712-0845).