An Infant with a Rare Disorder Died Before Her One-Month Old Celebration, Because the Funding Came Too Late

A young life that could’ve been, and should’ve been spared, but it wasn’t, from the Newspapers, translated…

This is mandating a change in the laws here, the National Health Agency stated that “This drug wasn’t approved yet by the FDA, so it didn’t meet the requirements for payment assistance.”

A little girl was diagnosed with a very rare disorder that occurs three in a million children, but because of the medications for treatment was really expensive, for the time being, the hospitals could only give her blood supplies and dialysis to treat., and, this baby had died in just twenty-eight days of being born.  The child’s father, Tsao said, that he hoped that his daughter would be the LAST of the children who were “put on a waiting list” to receive medical assistance.

The young child is diagnosed with hemolytic uremic syndrome, and the treatment drug for this had just been passed this April, but the National Health Insurance did not cover it, and so, the government couldn’t have any kind of emergency assistance in place, the father could only get it through applying for the special circumstance for his child, and, after it was approved, the ONE dose had cost $2,100,000N.T.

The father said, that even IF he and his wife had managed to scrounge up the money for the first few shots, there was NO way that they can afford the treatment for their little girl completely.

The father stated, that during the time when his daughter needed the treatments, the government did NOT offer them any medical assistance at all.  His daughter had spent her first few days of life inside an incubator, and that the very first time he and his wife had finally held the child’s body was after she was dead, his heart wrenched.

The founder of Rare Disorder Foundation, Chen said, that last year, the little boy, Yeh, and the little girl now, had both fitted the criteria of the “Rare Illness Medical Treatment Assistance” rule number thirty-three.  Even IF the health insurance didn’t cover it, the government should still provide the emergency dosage for the patients, but, in these two cases, the government did NOTHING.

Toward this, the secretary of the Citizens Health Department, Hsiao stated, that this illness’s treatment had NOT been filed by the FDA, so that, was why there was NO monetary assistance offered on the medications for treatments.

Chen believed, that the biggest goal of Rule number thirty-three is to give emergency assistance before the national health insurance can pass the treatment.  And, from these two separate cases, you can see how there was NOT only NOT enough emergency resuscitation at all, let alone saying that there is NOT enough aid.

Chen stated, that a human life is at stake here, and she begged for the related departments, to pass the laws to lower the costs no matter what.

She’d also claimed, that since the requirements for the rare disorder treatment had been agreed upon, DO give the medications to those who are in need soon as possible.

And so, a child’s life HAD to be lost, for the process of passing THIS stupid law to fasten, and, IF that’s the case, how MANY more children MUST die, for the drugs to pass through the requirement to get on the “funding list”?  And this, is a BIG problem, in a country where everybody HAS health insurance too, so, the system still isn’t perfect at all!!!