COVID-19 vaccination should prioritize rare disease patients

Rare diseases include peritoneal dialysis, hemophilia, thalassemia, Multiple sclerosis (MS), Spinal muscular atrophy (SMA), Epidermolysis bullosa (EB), Cystic fibrosis (CF), Mucopolysaccharidosis type I (MPS I), autism, organ transplantation, and tissue therapy, patients with primary immunodeficiency disease (PID).

In the Iranian calendar, May 8 is registered as a day of rare and hard-to-treat diseases to organize and promote the status of rare and hard-to-treat diseases in various fields of treatment, medicine, education, prevention, and social.

Patients with rare diseases often face a long journey from diagnosis to treatment. There are 540,000 patients in the country, Mehdi Shadnoush, head of the Health Ministry's center for transplantation and disease management, announced.

As coronavirus is more fatal to those with underlying diseases, vaccination of vulnerable groups must be given priority.

So far, some 20,000 patients with rare diseases have received the COVID-19 vaccine, Shadnoush announced, ISNA reported on Saturday.

All the patients suffering from such diseases will be identified and called by the medical universities based on registration systems to receive the vaccine, he added.

National document on rare diseases

Patients with rare diseases launched and signed a petition calling for drawing up a national document on rare diseases on the occasion of Rare Disease Day, February 28, 2019.

The National Document on Rare Diseases, recently prepared in collaboration with the Rare Diseases Foundation and the University of Tehran, was drafted by prominent domestic and foreign experts.

The main vision of this document is to prevent the birth of infants with rare diseases and to solve the medical and therapeutic problems of rare patients in the country.

Rare diseases prevalence

According to the statistics published in 2019, the number of rare diseases identified in Iran has reached 332 types of diseases and about 4,750 people are covered by the Rare Diseases Foundation of Iran.

Out of a thousand population, 2 people get a rare disease, while the prevalence can be curbed by changing people’s culture, screening, identifying, preventing the births, and raising awareness.

According to WHO, rare diseases are often serious, chronic, and life-threatening. The European Union (EU) definition of a rare disease is one that affects fewer than 5 in 10,000 people. At present, more than 6000 rare diseases are known; around 80 percent of them are genetic disorders and half of them occur during childhood.

Grouped together, rare diseases affect 6–8 percent (or about 30 million people) out of the 508 million population of EU countries. This roughly equals the estimated prevalence of diabetes in the World Health Organization European Region, which in 2013 was 6.8 percent of 658.7 million adults in the 20 to 79-year age group.

Rare diseases are associated with a high psychological burden for the patient but they can also have a major impact on a patient’s family. In addition to the health burden on patients, few of these diseases have an effective drug treatment available.

Courtesy of Tehran  Times