Human rights committee rules in favor of man with Lou Gehrig’s disease
After Lee Gwang-bok filed 13 written complaints, gov’t decided to subsidize nursing expenses





The Anti-Corruption and Civil Rights Commission, South Korea’s presidential committee on human rights, ruled in favor of Lee Gwang-bok, a 59-year-old man with Lou Gehrig’s disease, after he filed 13 letters of complaint. Lee was protesting a government measure that bans patients with the disease with a certain level of income from receiving government subsidies for nursing services.


Under the ruling, the Ministry for Health, Welfare and Family Affairs said it would suspend the measure by the end of this year. On May 11, the ministry said that it would “resume the government nursing subsidy to some 120 patients with serious symptoms of Lou Gehrig’s disease beginning next month.” Patients have not received the government subsidy since April 2007. The ministry said it would compensate patients by paying unpaid subsidy payments from the past year.


Before the measure reducing the subsidy was implemented, the government had provided 1 million won (US$1,000) per month to patients with serious symptoms of the rare disease, which gradually kills nerve cells in the brain and spinal cord. The monthly subsidy consisted of 800,000 won for use of a respiratory device and 200,000 won for nursing expenses. Last year, however, the ministry revised its support for medical costs for rare and incurable diseases. Under revised measures, the ministry raised its monthly subsidy for nursing costs to 300,000 won from 200,000 won for low income patients, but discontinued payments of the subsidy to patients with a certain amount of income. The revision came as the ministry expanded its subsidy program to cover 98 diseases, an increase from 89. However, the ministry implemented the stopgap measure without implementing a corresponding increase in its medical support budget.



Lee, who was diagnosed with Lou Gehrig’s disease in the fall of 2002 and can only give expression to his feelings by blinking “yes” or “no” with his eyelids, was angered by the government’s revised measure. Once a patient with the disease is forced to rely on a respiratory device, the patient needs round-the-clock nursing care. This costs patients at least 1.5 million won per month, a huge financial burden even for a middle-income family. In spite of the financial burden, however, the ministry said Lee was no longer eligible for the subsidy, citing his monthly income of some 1 million won and his small apartment in Goyang, north of Seoul.


Lee’s only weapon against the government’s decision was his eyelids. Though not many people have paid much attention to his plight, Lee took the time and patience to make himself heard throughout the nation. As one of Lee’s family members or a helper recited the letters of the Korean alphabet in order, “ㄱ, ㄴ, ㄷ, ㄹ ... ,” Lee blinked his eyelids whenever he heard the letter he wanted. Vowels, such as “ㅏ, ㅑ, ㅓ, ㅕ …,” were written using the same method. In this way, Lee was able to write two or three words per minute.


Last year, Lee filed a total of 13 written complaints. In one case, a message he sent that said, “the government’s measure has “lost touch with reality because of the higher cost of nursing fees,” earned him this outrageous reply from the ministry: “If you have more questions ... please call us and we will answer.”


Though Lee’s uphill battle incited the ministry to change its policy temporarily, it seems the struggle has not yet ended. Beginning next year, the ministry will again use income and assets to determine who is eligible for the subsidy. This year, the ministry has expanded the subsidy to cover an additional 13 diseases, but slashed the total budget for subsidies by 1.6 billion won.


Lee says he will continue his fight. In an e-mail sent on May 11, Lee said, “The incumbent government hasn’t prioritized the welfare budget, which doesn’t help it revitalize the economy. Does the government want to categorize disabled people with serious illnesses as a burden and let them die quickly by allocating the (welfare) budget to the construction of a canal?” referring to President Lee Myung-bak’s pledge to build a cross-country waterway from Seoul to Busan.


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