About 30 patients who suffer from a rare lung disease known as pulmonary arterial hypertension (PAH) yesterday called on the government to relax regulations on life-saving drugs and give them the costly medication before the disease catches up with them.
The drugs are covered by national health insurance, but for patients stricken by the little-known PAH (a progressive disease causing abnormally high pressure in the vessels which supply the lungs with blood), the five-day-long medical review procedure to acquire the medication could mean missed opportunities to save lives.
"We appreciate the government's benevolence in covering the cost of the expensive drugs, but the disease drains us very quickly," said Wu Hsiao-liang (
"Patients with severe PAH may not survive the five-day review process," Wu said.
The disease is associated with a thickening the blood vessels of the lungs, which reduces the flow of blood through the lung and puts a strain on the heart, ultimately leading to heart failure. Patients with acute PAH are constantly on the brink of sudden death, doctors say.
"The disease varies from person to person. But all patients share one thing in common: the disease progresses rapidly. On average, people only live 2.8 years longer after they develop the PAH-related symptoms. Children inflicted by PAH usually fail to survive longer than 10 months," said Lee Yung-chie (李元麒), chief of the division of thoracic surgery at National Taiwan University Hospital.
The high price of the medication PAH sufferers need also adds to a patient's misery. Because the medication to treat PAH costs an average of NT$110,000 to NT$200,000 every month, few patients can afford the drugs without grants from the government.
Wu noted that his interest group is not opposed to the review process, but said that doctors should be permitted to give patients the much-needed drugs before they receive official approval to do so.
He also illustrated how the consequences could be fatal.
Wu recalled how an Aboriginal patient from Hualien died on a hospital bed next to his because the woman could not afford the intravenous injection of Flolan that could have prolonged her life.
"Many people have died while waiting for their medical review process to finish," Wu said, "Now that the new drug Bosentan is on the market, we really hope the Bureau of National Health Insurance can help us to get Bosentan instead of putting up unnecessary obstacles."
In August, the Department of Health promulgated PAH as a rare disease recognized by the government. Since then, patients with PAH are entitled to full coverage for medication by national health insurance under the Rare Disease Prevention and Medicine Law (罕見疾病防治及藥物法).
But the Bureau of National Health Insurance requires 4 1/2 working days to review a patient's diagnosis report before they give reimbursement for the necessary drugs, including Bosentan, and an intravenous injection of Flolan to treat the disease.
Since the medication is expensive, no hospital gives away the drugs without the bureau's grant of reimbursement.
"The administrative procedure is killing people," said Dai Ren-kong (
"Whenever I want to prescribe Bosentan or Flolan, the hospital manager will ask me where the official permission is," Dai said.
"We are not allowed to prescribe the drugs before we have the official document in our hands. Patients plead with us, but doctors can only wait helplessly before the permission comes," he added.
Patients and doctors called on the bureau to allow the doctors to prescribe the drugs before the official review to grant free medication has concluded. But since there is no reported case of a patient dying during the review process, doctors are wary the procedure will change.
"A review process is a missed opportunity to save patients' lives," Lee said.
"Patients with acute PAH could die at any time."
About one in a million people suffer from the disease. Currently, 27 patients nationwide reported their cases to the Taiwan Foundation for Rare Diseases, a grassroots organization which has helped them fight for their right to medical care. About 20 or 30 Taiwanese contract the disease every year.
Former Czech Republic-based Taiwanese researcher Cheng Yu-chin (鄭宇欽) has been sentenced to seven years in prison on espionage-related charges, China’s Ministry of State Security announced yesterday. China said Cheng was a spy for Taiwan who “masqueraded as a professor” and that he was previously an assistant to former Cabinet secretary-general Cho Jung-tai (卓榮泰). President-elect William Lai (賴清德) on Wednesday last week announced Cho would be his premier when Lai is inaugurated next month. Today is China’s “National Security Education Day.” The Chinese ministry yesterday released a video online showing arrests over the past 10 years of people alleged to be
THE HAWAII FACTOR: While a 1965 opinion said an attack on Hawaii would not trigger Article 5, the text of the treaty suggests the state is covered, the report says NATO could be drawn into a conflict in the Taiwan Strait if Chinese forces attacked the US mainland or Hawaii, a NATO Defense College report published on Monday says. The report, written by James Lee, an assistant research fellow at Academia Sinica’s Institute of European and American Studies, states that under certain conditions a Taiwan contingency could trigger Article 5 of NATO, under which an attack against any member of the alliance is considered an attack against all members, necessitating a response. Article 6 of the North Atlantic Treaty specifies that an armed attack in the territory of any member in Europe,
LIKE FAMILY: People now treat dogs and cats as family members. They receive the same medical treatments and tests as humans do, a veterinary association official said The number of pet dogs and cats in Taiwan has officially outnumbered the number of human newborns last year, data from the Ministry of Agriculture’s pet registration information system showed. As of last year, Taiwan had 94,544 registered pet dogs and 137,652 pet cats, the data showed. By contrast, 135,571 babies were born last year. Demand for medical care for pet animals has also risen. As of Feb. 29, there were 5,773 veterinarians in Taiwan, 3,993 of whom were for pet animals, statistics from the Animal and Plant Health Inspection Agency showed. In 2022, the nation had 3,077 pediatricians. As of last
XINJIANG: Officials are conducting a report into amending an existing law or to enact a special law to prohibit goods using forced labor Taiwan is mulling an amendment prohibiting the importation of goods using forced labor, similar to the Uyghur Forced Labor Prevention Act (UFLPA) passed by the US Congress in 2021 that imposed limits on goods produced using forced labor in China’s Xinjiang region. A government official who wished to remain anonymous said yesterday that as the US customs law explicitly prohibits the importation of goods made using forced labor, in 2021 it passed the specialized UFLPA to limit the importation of cotton and other goods from China’s Xinjiang Uyghur region. Taiwan does not have the legal basis to prohibit the importation of goods