New Subsidy for Pompe Disease Screening

One of the foundation’s purposes is to prevent and provide guidance to rare disorders. 
With the change in society and development of the economy, the world’s birth rate is 
declining rapidly each year. According to the Ministry of the Interior's survey, the 
number of births in 2008 in Taiwan is less than 200,000 for the first time ever. As the 
birth rate decreases, each birth becomes more and more important to the parents. 
Our foundation noticed this and therefore extended the protection against rare genetic 
disorders, from families with histories and those that possibly carry disorders; we start 
with advocating screening for newborns. Since July 1st, 2006, the Department of Health 
extended the financial aid towards the newborn screening to more people and more 
categories. We used to believe in early check ups and treatment, but now it is more 
than a belief, it can easily be done and it has been proven effective. Thus, we believe, 
even more firmly, that early diagnosis is most effective way to prevent genetic disorder 
tragedies. 

Patients of Pompe disease is a neuromuscular disorder caused by a deficiency in the 
enzyme Acid alpha-glucosidase which is needed to break down glycogen--a long, 
branched glucose polymer and stored form of sugar used for energy. The build-up of glycogen causes progressive muscle weakness (myopathy) throughout the body 
and affects various body tissues, particularly in the heart, skeletal muscles, liver and 
nervous system. There was no effective treatment until the US Food and Drug 
Administration approved a biologics license application for Myozyme in 2006. It gave 
all the patients and their family infinite hope. As the drug was paid by National Health 
Insurance in Taiwan, the National Taiwan University Hospital started the screening 
program of newborns so that the purpose of "early diagnosis and treatment" is reached. 
The screening program was transferred to the Taipei Institute of Pathology and the 
Foundation of Health and Hygiene as well in 2008. 

Our foundation hopes to help more families and expand the protection and testing. 
Since this February, we have been cooperating with three institutes and screening of 
the Pompe Disease has been subsidized. Adding on to the subsidy of 500 NT for 
aborigines, there is also a subsidy for families with low income demonstration (150 NT). 
We hope that these babies can receive the best care from the first moment of their birth.