Call for awareness and support for rare cancer patients

Medical experts are calling for a change as many rare cancer patients miss out on the optimal period for treatment because of a late diagnosis.

The standards for defining rare cancers vary worldwide. In the United States, the annual incidence of rare cancers is less than 15 per 100,000 people, specialists said at a seminar on mycosis fungoides, a type of uncommon cancer. In Europe, it is 6 per 100,000.

Because rare cancers have a low incidence and a small number of patients, there is little awareness and attention in clinical practice. As a result, there is a dearth of experience in diagnosis and treatment, making large-scale epidemiological research problematic.

MF is one such example.

MF is a prevalent form of cutaneous T-cell lymphoma, a type of blood cancer. Cutaneous T-cell lymphomas develop when particular white blood cells, known as T cells, become malignant. Because MF affects the skin, generating various forms of skin lesions, patients are low on confidence and suffer from social anxiety and even depression.

"About one-third of MF patients can develop progressive skin lesions that can affect other organs and the blood," said Dr Wang Yang of Peking University First Hospital's dermatology department.

"If malignant cells are not treated in time, they will target blood and other vital organs, severely lowering patients' chances of survival. Half of terminally ill patients have a five-year survival rate. However, because MF is rare and its symptoms might be confused with other skin illnesses, the typical period for a patient to acquire a correct diagnosis is between two and seven years."

"Delayed diagnosis also makes treatment more difficult. It is critical to develop more innovative testing and treatment methods and products to improve the accuracy of diagnosis and treatment."

Each type of disease and each group of patients should be cared for, charity organizations say.

"For patients with rare cancers like MF, more social support and forces should be organized to give them support and aid," said Gu Hongfei, founder of Lymphoma Patients' Home, a non-governmental platform for patients to share information, experiences and cooperation.

"The government and medical industry insiders should develop more friendly and favorable policies for such patients, and give more support to new drug development and clinical use, as well as social insurance mechanisms," Gu said.

Health officials and specialists have said that the government should increase the availability of innovative rare cancer medicines.

According to Cheng Wendi of the Shanghai Medical and Medical Development Research Center, a multi-insurance network should be formed through the collaboration of the government, hospitals, pharmaceutical corporations and charitable groups to ensure patients' drug consumption and health treatment.