Stepanov has suggested to create a strategy against rare diseases

The strategy will enable treatment, prevention and diagnosis of dangerous diseases

Health Minister Maxim Stepanov proposed to create a national strategy to combat rare diseases.

As reported on the official website of the Ministry of health, this was discussed at the meeting of the Committee on health, health care and health insurance in the Verkhovna Rada.

“I consider necessary the adoption of a National strategy for the prevention, diagnosis and treatment of rare (orphan) diseases, because its absence jeopardizes access to a continuous adequate treatment of orphan patients as well as providing them with essential drugs and special food,” – said Stepanov.

The Minister also recalled that the government’s attitude to such patients – an indicator of the state of civilization.

The Minister added that a working group forming the purchase of drugs for rare diseases should include specialized doctors, and well worth a “listen to the representatives of patient organizations”.

In addition, Stepanov noted that the main components of the strategy should be:

– the introduction of a register of citizens suffering from orphan diseases;

– ensuring access to prevention, diagnosis, treatment and rehabilitation of patients with rare diseases;

– development and adaptation of legislation to the provision of care to patients (clinical protocols, clinical indications);

– collection of statistical information about the frequency and spectrum of these diseases;

– introduction of effective methods of early diagnosis;

– implement effective methods of treatment and rehabilitation of patients, reduce disability and mortality;

– training of qualified specialists for the diagnosis and treatment of orphan diseases;

– raising the awareness of doctors and patients;

– stimulation of scientific research in this field;

– ensuring access for patients with orphan diseases to treatment;

– ensuring the specific needs of people suffering from rare diseases, improving the system of rehabilitation and palliative care;

– the creation of necessary infrastructure that will ensure coordinated work of all components of the health system;

– development of national and international cooperation in the prevention, diagnosis and treatment of rare diseases;

– development of system of public control in health care, interaction with professional associations of patients.

The health Ministry has reminded that, according to approximate data, orphan diseases affecting one in two thousand of the Ukrainians. The existence of the problem recognized at the state level only in 2014, with the adoption of the relevant law. However, there is still no register of people suffering from such diseases.

As reported, Maxim Stepanov has declared its intention to conduct a comprehensive health reform, based on the objective situation in the state.

He also reported that 20% of doctors sick COVID-19 because of the unavailability of the medical system of the country for a pandemic.