Ana is 7 years old and goes to the 4th grade of a primary school in her Serbian hometown Novi Sad. She is studying hard because she will be a police officer when she grows up. It is not a given that she can look to the future with such confidence. Ana had a difficult start in life. Ana was already very ill at the age of 14 months – she was constantly tired and her movements were severely restricted. In her Serbian home town of Novi Sad, the doctors were puzzled about the cause. It turned out that Ana was suffering from a rare neurotransmitter disease (tyrosine hydroxylase) in which the brain does not produce enough of the hormone dopamine. “We were relieved when we finally found the cause,” says her mother, Ivana Badnjarevic. She was happy when she heard that her daughter would be able to lead a normal life by regularly taking a drug called l-dopa. There was, however, a problem: the disease is extremely rare with less than 100 known cases worldwide, and the required medicine was unobtainable in Serbia.
But then the pharmacist at Ana’s clinic came to the rescue with a brilliant idea. He contacted INO-Pharm, the Serbian subsidiary of the PHOENIX group specialised in obtaining drugs that are not available or even permitted on the domestic market. The little girl has been taking the preparation in Serbia for four and a half years, her mother reports. “Ana is now five years old and is able to lead a normal life.”
Tracking down rare drugs is laborious work, requiring extensive knowledge and experience. Of the 20 employees at INO-Pharm, 10 are highly specialised in obtaining drugs as the regulations tied to the importation of unlicensed medicines is strict. These experts not only know the manufacturers of rare medicines but are also well-versed in the regulatory environment. They understand how drugs are imported and are familiar with the procedures of the regulatory authorities. Every year, they track down between 140 and 170 different products and have them sent to patients seeking help in Serbia, Montenegro, Bosnia and Herzegovina and North Macedonia.
It is not unusual for certain drugs to be unavailable, particularly in smaller countries where high registration fees for medicines often make it unprofitable for pharmaceutical manufacturers. For this very reason, Specific Pharma, a PHOENIX group subsidiary in Denmark, handles the importation of pharmaceuticals for which approval has not yet been applied for in the respective countries. This subsidiary has approximately 1,000 drugs permanently in stock. In 2018, Specific Pharma provided 2,500 urgently needed medicines to patients. Specific Pharma’s services are also in demand in other countries. Over the past few years, the company has gradually extended its coverage to other markets, including all of the Nordic countries, the Baltics and the Netherlands.
Ana loves to spend her free time outdoors. She enjoys playing football in the park, climbing trees and riding her bike. Ana still has to take L-dopamine regularly and is examined periodically - but both of these are a small price to pay for a normal and carefree life. Ivana feels the same way. She is just grateful that there are companies like INO-Pharm and Specific Pharma that can save the lives of people like her daughter Ana with their pharmaceutical and legal expertise.