In Vietnam, there are about 100 rare diseases, this number is much higher if calculated worldwide. Rare diseases cause patients many challenges and difficulties, and are often chronic and dangerous diseases.
Access to medications to treat hemophilia. Photo: Institute of HTMTW
In Vietnam, there are about 100 rare diseases recorded and 6 million people are suffering from these diseases. Of these, 58% of cases are children, with 30% of children dying before the age of 5 due to difficulty accessing treatment. For a few rare diseases, although there are advanced drugs in the world that help treat the root cause of the disease, which is genetic, they have not been approved for use in Vietnam, or there are drugs available but it is difficult for patients to access due to price. expensive, not covered by health insurance.
There are many causes of rare diseases such as genes, bacteria, fungi, immune factors, etc. Diagnosis, treatment, and drug production for rare patients are not as convenient as other diseases. common disease.
Often people with rare diseases need long-term treatment, which has a great impact on the patient’s psychology and economy. Or some rare skin diseases also cause patients to feel guilty, leading to negative thoughts and feelings.
Associate Professor, Dr. Luong Ngoc Khue, Director of the Department of Medical Examination and Treatment (Ministry of Health), said: Drugs that have been used for treatment often have very high prices, and for drugs that are in the research process, Vietnam also Research rules must be strictly followed.
Currently, there are also many types of drugs licensed by the Ministry of Health for treatment at private medical facilities such as the National Children’s Hospital, the Central Hospital of Hematology and Blood Transfusion… and many mid-level hospitals. Other treatments have effectively treated patients.
However, accessing rare drugs still presents some difficulties. For example, only 3,600 patients in Vietnam have been diagnosed and managed with hemophilia, accounting for about 50% of the actual number. Bispecific antibody drug Emicizumab through the World Hemophilia Federation with support from Roche. However, now that the drug visa is about to expire, the support program may be interrupted. The rules for accessing aid are very difficult. The Central Institute of Hematology and Blood Transfusion recently received money from international aid but had to return it due to procedural problems.
Experts suggest the need to develop rare drug policies to increase access to drugs such as rare disease lists, rare disease treatment guidelines, rare drug registration and licensing, patient management, and financial mechanisms.
