Chinese Red Cross works to improve rare disease healthcare

The Chinese Red Cross Foundation will intensify efforts to help improve healthcare services for patients with rare diseases - estimated at nearly 20 million in China through a variety of assistance programs.

The programs to be carried out in the next few years will include medical advisory services, mobilizing pharmaceutical companies to donate drugs to patients with financial difficulties, working with medical physician associations to provide training to doctors treating rare diseases to improve their skills in diagnosis and treatment of rare diseases, and providing support to other non-governmental organizations in China that aim to provide medical relief to rare disease patients, the foundation said.

The foundation also will try to work with international pharmaceutical companies and drug authorities to promote domestic availability of effective drugs for rare diseases, which are not available in China but already in use overseas, it said.

Although the efforts by the foundation will be far from enough, considering the 20 million patients with various types of rare diseases in China, they will at least improve life for a portion of these patients, it said.

"We hope our efforts will encourage more people to participate in rare diseases relief, and bring hope of life for more patients through joint efforts from the government and all society," the foundation said.

Globally, a unified definition for rare diseases is lacking. Many experts in China regard rare diseases as those whose incidences are lower than one per half a million among the total population, or diseases with incidences of less than 1 per 10,000 among newborn babies.

Globally, means of diagnosis and treatment are generally lacking for rare diseases, and of all reported rare diseases, which number more than 7,000, effective drugs are only available for 10 percent of them, according to the foundation.

Chen Zhu, president of the Red Cross Society of China, said with improvement of medical insurance policies in China in recent years, some drugs for some serious diseases, which were not covered by basic medical insurance programs, are now covered. But many drugs for rare diseases are still not covered, resulting in a number of rare disease patients lacking access to drugs.

In China, about half of the 55 drugs available for rare diseases, which are usually very costly, are not covered by basic medical insurance programs, according to the foundation.

In addition, training should be improved for doctors to improve diagnosis and treatment for rare diseases, especially to pediatricians in less developed areas, such as western China, so they are more capable of diagnosis and treatment of rare diseases, many of which are inherent, Chen said.