Mon, Dec 27, 2004 - Page 2 News List

Patients call for an end to red tape

FATEFUL WAIT Sufferers of a rare lung disease need immediate treatment to survive and should not have to wait for approval, a patients' rights group says

By Wang Hsiao-wen  /  STAFF REPORTER

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 (吳曉亮), chairperson of the Taiwan Society of Pulmonary Arterial Hypertension.

"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 (戴任恭), a pediatric cardiologist at Kaohsiung Municipal Hsiao-kang Hospital.

"Whenever I want to prescribe Bosentan or Flolan, the hospital manager will ask me where the official permission is," Dai said.

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