EDITORIAL: Adult T-cell leukemia

"Please, don't let the next generation suffer like this." This heartfelt plea has finally reached the government's ears. Adult T-cell leukemia (ATL) is a cancer of the blood, thought to be caused by a viral infection. The government recently decided to allow pregnant women to receive publicly funded antibody tests for the virus that causes ATL, or human T-cell leukemia virus type 1 (HTLV-1). In addition, a special task force in the prime minister's office is working on a comprehensive strategy to fight this disease.

Patients infected by the virus also face a risk of developing HTLV-1 associated myelopathy (HAM). Japan has an estimated 1.08 million carriers, a number comparable to those with hepatitis B or hepatitis C.

The infection-to-incidence ratio for ATL is said to be 3 to 5 percent, with a latency period of about 50 years. The incidence ratio for HAM is 0.3 percent.

That means that for most people who are infected, the disease doesn't always appear soon. However, once symptoms emerge, the average survival period is about 13 months. More than 1,000 patients die of the disease each year.

Once HAM symptoms that restrict walking or urinating worsen, the patient is forced to endure life in a wheelchair or becomes bedridden.

From the point of view of patients and their families, the government has been slow to act. Therefore, just the fact that the government has finally acted in response to pleas from patients is welcome.

Official help came late because the government failed to recognize the situation clearly. A health ministry research group survey conducted in 1990 found a wide disparity among regions, with more than half of those infected living in Kyushu and Okinawa Prefecture. This led the government to regard ATL as an endemic disease, leaving the matter in the hands of local governments.

However, a recent survey found that although the number of infections in Kyushu and Okinawa are falling, they are rising in Kanto and other regions. Now it is widely believed that a nationwide program is needed to battle this virus.

In many cases, the virus is transmitted by a nursing mother to her child. If an infected mother breast-feeds her child for more than six months, the odds of the baby contracting the virus rise to about 20 percent.

Some data show that the baby can avoid transmission if its infected mother uses infant formula or breast-feeds for no longer than three months.

The urgent task is to prevent mother-to-child transmissions. To do this, all expectant mothers must be checked for infection during prenatal checkups. If an expectant mother is found to be carrying the virus, then she must be instructed how to raise her child safely and prevent the virus from passing to the next generation.

Counseling for infected mothers must be provided with discretion. Private groups, such as the Kagoshima-based society for ridding Japan of the HTLV virus, should be consulted and used to establish the best kind of counseling to provide for patients.

Unfortunately, no effective treatment for ATL or HAM is available. The government must work hard toward developing an effective therapy. Yet few physicians, or even pediatricians, are knowledgeable about the workings of this virus.

A crucial first step, therefore, would be to train doctors and health-care professionals around the country to increase the number of people with the necessary knowledge to combat this problem.

--The Asahi Shimbun, Nov. 8