Rare diseases covered by medical insurance scheme

Zhejiang has become the first province in China to cover rare diseases, including amyotrophic lateral sclerosis (ALS), in its medical insurance scheme.

The move brings hope for patients with rare diseases struggling with high medical fees and a lack of treatment.

Starting Friday, the eastern province will allow local patients with ALS, Gaucher's disease and phenylketonuria (PKU) to have their medical fees partially reimbursed, the human resources and social security department of Zhejiang said.

An official with the department said that more than 80 percent of medical fees can be reimbursed for a patient whose condition is listed under the state-led medical insurance scheme.

ALS strikes between one and three out of every 100,000 people. Patients progressively lose muscle strength, eventually becoming paralyzed and unable to speak, move, swallow or breathe.

British scientist Stephen Hawking is one of the best-known people with the disease.

Gaucher's disease would cause swelling of liver and spleen, anemia, pain, among other symptoms.

PKU is a metabolic genetic disorder that can lead to learning disabilities, seizures and other medical problems.

The ice bucket challenge, which swept many places of the world in 2014, helped draw public attention to rare diseases.

Advocates of their inclusion in the medical insurance scheme say that due to the small number of patients, the drugs are often priced far beyond the financial reach of ordinary families as drug companies try to recover the cost. Endi