The first MSUD patient in the Philippines was diagnosed in 1983 at the Philippine Children’s Medical Center, a government specialty tertiary hospital for children, by Dr. Carmencita D. Padilla, the only clinical geneticist at that time. Over the next twenty years, approximately 60-70 patients have been diagnosed with MSUD. Only 21 of these have survived, now ranging in age from 0-16 years old.
In the Philippines, medical management of an MSUD child is indeed a big challenge due to the following: lack of screening services, unavailability of the medically indicated special powder [editor’s note: medical food or formula] and amino acid supplements and other technical resources. Earlier, whole blood was sent to Australia to confirm the diagnosis. When my first child was diagnosed in 1993, blood was still sent to Australia for leucine monitoring. In the mid to late nineties, the Institutes of Human Genetics, National Institutes of Health, UP began offering laboratory services for leucine and plasma amino acid monitoring in Manila.
In a third world country like the Philippines, the majority of families with MSUD don’t have the money needed to meet the medical needs of their children, including the special diet powder and special food. Many parents are minimum wage earners, and others are unemployed. Commercially prepared low protein foods such as biscuits and the like can only be availed through the courtesy of relatives residing in the US or Australia, as the high cost of these imported items and the added cost of freight and taxes make them too expensive for most. For example, a can of MSUD powder (400 gms) cost P2,500- 3,000 or $55-65 American dollars. At present, we are not receiving any subsidy from our government.
Dr. Carmencita Padilla, feeling the burden of the families with MSUD Children, tried to find ways of helping parents by networking with local formula companies and the Department of Health. Through her efforts, Mead Johnson Philippines committed to facilitate the donation of MSUD diet powder to affected children from their mother company based in the US. For the past thirteen years, Mead Johnson Philippines was so kind enough to supply 6 cans of formula monthly to each child with MSUD. While not sufficient to completely meet the medical needs of our children, it was a big help. In order to make the formula last for a month, parents find local alternatives such as using rice soup or "Am". As our children are growing, there is a need for other sources of food aside from formula. What is worse is that we do not have commercially low protein solid food available in the local market. Parents make use of indigenous food just to have something to feed their children.
In 2006, two families with MSUD children were given the opportunity to attend the MSUD symposium held in Ohio through the financial assistance of the MSUD Family Support Group. The participation of a Philippine delegate to that symposium inspired the 2 families to organize the MSUD Philippine Support group. The group was formally organized in August 2006. One of its activities was to help patients undergo plasma amino acid testing. While this essential test is locally available, it is not affordable to most of the patients.
In April 2007, unexpected news from Mead Johnson Philippines caught parents by surprise and caused us dismay. We were informed that there will be no regular supply of MSUD diet powder for 4 months for two reasons: first, Mead Johnson US was requiring more documents to support the donation; second, the new Philippine Milk code stipulates stricter rules for any form of donations made by any formula companies in the locality. Parents were so helpless and worried for their kids. The local support group sought help from MSUD Family Support Group members in the United States through e-group e-mails.
Our pleas were soon granted. Applied Nutrition Corp. donated 15 cases or 60 cans of Complex MSUD Vanilla, and a parent in the US contributed the shipping fees. The formula was divided equally among our MSUD children. After a couple of months, another 100 cases or 400 cans of SHS MSUD MAXAMAID artificially orange flavored powder was donated by SHS North America through the MSUD Family Support Group in America. The generosity of the two entities prolonged and saved the lives of our children. This lightened the burden and worries of all parents. Volunteers from the MSUD Family Support Group in the States exerted extra effort, patience and time in processing all the necessary requisites in sending the donated formula. The group also paid the substantial freight expenses. Without the assistance of the MSUD Family Support Group in America, most of our affected kids would probably be in metabolic crisis or might be dead.
Eleven months has passed and Mead Johnson Philippines is still in the process of obtaining approval from the Department of Health for the importation of their donations. We are all praying hard that soon this problem will be solved. We are very much thankful for all the kindness that our fellow parents in the MSUD Family Support Group have extended to us. From all of us here in the Philippines, our deepest gratitude to our fellow parents!!!
Editor’s note: Between the time this article was written and the publication of this newsletter, another shipment of over 63 cases (257 cans) of SHS MSUD Maxamaid has been shipped and distributed to the Philippine families.
The Quest to Survive: the Plight of MSUD patients in the Philippines
- Written by Dorie Marco
- Category: Volume 25-1