Hsiao Mei-ling, director of the DOH Bureau of Health Promotion, made the remarks after reports that the bureau is planning to cease subsidizing 50 percent of the cost of Zavesca — the drug that has been used by Dr. Hu Wu-liang of National Taiwan University Hospital (NTUH) to treat patients suffering from Niemann-Pick disease — drew broadsides.

Noting that the bureau began the experimental subsidy project last November, Hsiao said the bureau has yet to come to a final decision on whether to halt it after its original one-year deadline expires next month.

According to Hsiao, members of the DOH’s rare disease advisory committee are divided over the effectiveness of Zavesca in treating patients with Niemann-Pick — an inherited condition involving lipid metabolism in which harmful amounts of lipids accumulate in the spleen, liver, lungs, bone marrow and brain. The disease is fatal and usually strikes in childhood or adolescence.

The DOH is hopeful that Hu, director of the NTUH’s medical genetics department and the first doctor to prescribe Zavesca for local Niemann-Pick patients, can provide more clinical research information to help other medical experts understand the process and results of the treatment, Hsiao said.

Hopefully, she went on, the Australian maker of the drug can also offer more clinical data and research papers concerning Zavesca’s functions and effectiveness so that members of the rare disease advisory committee can make a more comprehensive review and come up with the best possible decision on the issue.

Hsiao said that if data collection proceeds smoothly, the planned experts’ meeting will be called in the near future.

Meanwhile, Hu said that from his clinical experience, Zavesca helps halt the pace of deterioration in Niemann-Pick patients and even helps some patients regain the ability to ingest food. “There is no other drug out there for Niemann-Pick patients,” he added.

According to Hu, Taiwan has fewer than 10 Niemann-Pick patients. Zavesca costs roughly NT$320,000 per patient per month. The Bureau of Health Promotion began to subsidize 50 percent of the cost of Zavesca for five young patients last November, with the remaining 50 percent of the cost provided by an NTUH social welfare fund.

The NTHU has urged the DOH to list Zavesca as a statutory drug for Niemann-Pick to allow for reimbursement from the health insurance program, but the application has not yet been approved.

Hu reportedly has agreed to a DOH proposal to invite local rare disease experts to visit the NTUH and join Hu in assessing the clinical progress of the five patients, their current health situation and feasible future treatment strategies.

For his part, DOH Minister Hou Sheng-mou suggested that members of the rare disease committee should visit Niemann-Pick patients and their parents to solicit their opinions before coming to a decision on the subsidy issue.

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