Tang Fei has a rare opportunity to help others

Tang Fei (唐飛), the man chosen to be Taiwan's next premier, has been diagnosed with myasthenia gravis, a non-fatal auto-immune disease, in which the body's own anti-bodies damage the nerves in charge of muscular control, resulting in a person's eyelids drooping, general weakness and slurred speech. The disease could even lead to difficulty breathing and discomfort of the limbs. Doctors say that the incidence of the disease is around four to eight per 10,000, and Tai-wan only has about 1,500 cases.

Because the disease is so rare, and results in the progressive weakening of muscles, it has been misunderstood for a long period. Many patient suffering from the condition have also been mistreated by doctors. The medical community is unwilling to devote significant resources to the disease. Nonetheless, sufferers of myasthenia gravis are lucky compared to the sufferers of other rare conditions.

For example, the vacillations of a multiple sclerosis patient are usually misunderstood as psychosis. Progeria (Hutchinson-Gilford syndrome) patients are seen as freaks due to their rapid aging process. Gaucher disease patients suffer spleen ruptures and bleed from the eyes, ears, nose and mouth -- which are often interpreted as karmic obstacles or possession by an evil spirit. Many osteodystrophy patients are unable to complete their education because of their brittle bones.

These and many other rare diseases have been overlooked by society because of the infrequency of their occurrence. Moreover, because many are inherited disorders, the lack of medical resources has contributed to their spread.

After reviewing Tang's medical report, President-elect Chen Shui-bian (陳水扁) told the legislature that the minister was only suffering from a "small malady," and Tang himself said that his recent surgery was to "take care of a small problem."

With a medical system full of problems, and one that distributes medical resources unequally, rare diseases are only a "minor problem" for important personages. But for the average person, the same diseases are a huge problem.

Now that Tang's illness has been revealed, it is likely that more people will learn about myasthenia gravis. This is the accidental benefit of a famous person coming down with a rare disease. In addition to hoping that Tang recovers as quickly as possible, we also hope that the future premier will push to create a more human and just system of medical provision.

Rare diseases have been virtually overlooked in Taiwan. Society is now run according to a capitalist, market-based logic whereby market demand completely runs the provision of medical resources and services. Few people are willing to invest time or money into the treatment of rare diseases. There are only 15 doctors in Taiwan that specialize in genetic diseases and all are at university hospitals.

Because each hospital sees few patients with rare diseases, they make little money treating such diseases and are thus reluctant to invest in personnel or equipment for their treatment. This leads to specialists changing to different areas, or becoming demoralized.

Drug companies are unwilling to import drugs for the treatment of the diseases because of the small number of patients and low profit margins. Patients have no option but to purchase drugs abroad, but there are miles of red tape and the national health care system will not reimburse the cost. Some patients go bankrupt purchasing the drugs; others smuggle drugs into the country.

Hospitals only look at the profit margin and refuse to import or store drugs for sufferers of rare diseases. As a result, doctors have to borrow drugs from patients who have stored up drugs for their own use. There is little knowledge in Taiwan about this as well.

With the hard work of the Taiwan Foundation for Rare Disorders (罕見疾病基金會) and lots of public support, some of the problems listed above have begun to improve. For instance, the Department of Health published two lists of drugs for the treatment of rare diseases, allowing for patient reimbursement. The "Rare Disorder Prevention and Drug Act" also passed the Legislative Yuan in February. There is still a great deal of work to be done in reforming the existing medical system.

Taiwan still needs to establish a reporting system for sufferers of rare diseases, a system to educate people about proper childbirth and nursing, more resources for childbirth information centers and a system to screen newborns for rare diseases and nursing care for rare disease sufferers. All of this will require a commitment from the new government. We hope that after Tang recovers, in addition to carrying out the affairs of the nation, he will also help to ameliorate the condition of rare disease sufferers in Taiwan.

Tseng Min-chieh is an associate professor at National Chung Cheng University. He is also the chief executive of the Taiwan Foundation for Rare Disorders.