A teenage girl suffering from a rare disorder yesterday called attention to the huge medical expenses she is incurring and asked the public for financial assistance after her parents passed away.
Accompanied by Chinese Nationalist Party (KMT) Legislator Lin Hong-chi (林鴻池), the 17-year-old, nicknamed “Hsiao-wei” (小薇), said in a press conference that she has trouble coming up with the NT$45,000 (US$1,400) needed each month for medical care.
Hsiao-wei has the first recorded case of congenital interstitial cell of Cajal (ICC) hyperplasia in the world, according to a study published in the American Journal of Surgical Pathology in November 2000.
Photo: Chang Chia-ming, Taipei Times
After receiving a colostomy, a right hemicolectomy, an ileostomy, and biopsies of the ileum, the high-school girl was left with a small intestine of only 10cm in length.
“It is not unusual for me to sit on the toilet the whole night,” she said, since the length of her intestines has resulted in constant diarrhea after eating.
Hsiao-wei has to give herself nutritional injections every day to maintain her energy and avoid toilet embarrassments at school.
Her father passed away months ago and she now lives with her grandparents. The three of them survive on NT$13,000 in monthly subsidies from the government and a home mortgage loan.
“Most families caring for patients with rare diseases often end up in debt or go bankrupt,” said chief executive officer of the Taiwan Foundation for Rare Disorders Huang Wei-gang (黃蔚綱).
There are about 200 documented rare diseases that occur in Taiwan, but only 60 kinds of drugs to treat these patients are available and subsidized by the National Health Insurance, Huang said.
Pharmaceutical companies are often unwilling to invest in rare disease drug research because there are few patients and consumers, which means less profit, he said.
Even if drugs are developed, they are sold at very high prices that average families cannot afford, he added.
Huang urged that more attention be paid to the difficulties faced by this minority patient population.
“They need a lot of assistance, both financially and spiritually,” he said.
There are about 6,000 people suffering from rare disorders or diseases in Taiwan.
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