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World Rare Disease Day: UNDP helps protect the constitutional right of all patients to healthcare

Feb 28, 2017

UNDP joins the initiative of the patient community to support patients with rare diseases (so-called orphan diseases) receive life-saving medicines. Worldwide, it is estimated that about 30 percent of children with rare diseases will die before reaching their fifth birthday. In a ground-breaking new procurement program established by the Parliament of Ukraine, which is now being replicated in other countries of the region, UNDP has completed procurement of medicines related to four orphan diseases, with finalization for three more underway and four more planned in the coming months. 100% of planned purchases for the four first programs have been conducted, and 42% of the rare disease medicines purchased have already been delivered to central MOH warehouse and from there being distributed to health facilities. Cumulative savings under the four programs comparing to the allocated budget constituted USD 3,3 mln.

Kyiv, February 28, 2017 - Today the world observes World Rare Disease Day to raise awareness for rare diseases and improve access to treatments and medical services for individuals with rare diseases and their families. There may be just a few patients with a particular rare (orphan) disease per country, but with more than 7,000 rare diseases recognized, around 300 million people are affected across the world. This especially vulnerable group, majority of whom are children, should be treated with special attention.

UNDP is conducting the procurement of medicines under 11 programs for treatment of such rare diseases such as cystic fibrosis, primary (congenital) immunodeficiency, mucopolysaccharidosis, pulmonary arterial hypertension, dwarfism of various origins, Gaucher disease, epidermolysis bullosa, juvenile rheumatoid arthritis, orphan metabolic diseases, hemophilia type A or B or Willebrand disease, as well as reagents for neonatal screening for phenylketonuria and congenital hypothyroidism.

UNDP started the procurement cycle for 2016 with treatment for Gaucher disease and mucopolysaccharidosis (MPS). Price cuts of 25 to 40% for each item against the 2015 procurement prices were reached. As of today, procurement under 7 out of 11 rare disease programs is fully or partly completed. 100% of planned amounts of medicines were procured under 4 fully completed programs – treatment of Gaucher disease, mucopolysaccharidosis, pulmonary arterial hypertension and orphan metabolic diseases, while 42% of all procured rare disease medicines are already delivered to Ukraine. Factual cumulative savings under only four programs comparing to the allocated budget constituted USD 3,3 mln. We expect this number to grow as we will soon close buying medicines for more programs.

Currently, UNDP launched the procurement for 22 out of 23 programs as agreed under the contract with the Ministry of Health. In total, UNDP has completely finalized procurement under 6 and partly under 5 more programs having spent almost 20% of the funds provided under agreement with the Ministry of Health of Ukraine.

Janthomas Hiemstra, UNDP Ukraine Country Director commented: “Supplying orphan disease patients with essential medicines is an inseparable part of their right to receive healthcare. We are cooperating with patient organizations to make sure patients receive treatment in time and that their right to healthcare is protected. We’re also closely working with the Ministry of Health in building capacity for establishing proper planning and regularity of future procurement cycles for treatment of orphan, as well as all other diseases covered by the state.”

The head of the civil society organization Orphan Diseases of Ukraine Council, Tetiana Kulesha, commented: “We welcome UNDP efforts to support the right of patients with orphan disease. It’s only together with the state, civil society and international partners that we can ensure the rights of patents with orphan diseases are protected at a decent level.”

Reference

Orphan (rare) disease – a disease that affects a small percentage of the population (usually less than 1 in 2000). Most rare diseases are genetic and present throughout the person's entire life, even if symptoms do not immediately appear. Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthday. Estimates vary as to exactly how many rare diseases there are, partly because countries define rare diseases differently. In European Union (EU) countries, any disease affecting fewer than 5 people in 10 000 is considered rare. In Ukraine the term is not legally defined, but the state guarantees treatment according to the official List of Orphan Diseases in Ukraine, which currently contains 256 diseases.

For more information about World Rare Disease Day: http://www.rarediseaseday.org/

Media inquiries:
Yevgeniy Zelenko, UNDP Ukraine Media Officer. +38-095-276-1406 yevgeniy.zelenko@undp.org