Mykhailo Martynenko is 30 years old, married, and living a fulfilled and happy life. But his life could have taken a very different path.
When Mykhailo was just 12 years old, he was diagnosed with Gaucher disease, a rare, progressive, inherited, genetic condition. Still in the 5th grade at school, Mykhailo was busy dreaming of a law career and left the worry over finding treatment for this rare disease to his parents.
After Mykhailo’s diagnosis, his mother, Olena, founded the Association of Patients with Gaucher disease to connect with others facing the same ordeal as her and her son. She also searched for information everywhere, appealed to the Ministry of Health and local officials and wrote to foreign organizations. Through that, she found out about the Sanofi Genzyme International Charitable Access Program (ICAP).
Mykhailo was 15 when he started receiving treatment from ICAP. He was able to continue school until his final year, when his condition meant that he had no choice but to study for a year at home.
“There were 6 months in my life, when I didn’t have any treatment. During this time, my weight dropped to 50kg,” recalls Mykhailo.
The lack of treatment for his disease had its own consequences. Mykhailo needed an urgent operation to take out his spleen, because it weighed almost 3kg (a healthy spleen weighs about 150g).
In addition to the spleen, the disease can also affect liver and bone tissue. Patients often feel weak, suffer bone pain, and develop more complex types of the disease that affect the nervous system.
“Thanks to the ICAP, I was able to continue therapy. I simply believed that I had a future ahead, and nothing could shake my faith. I am very grateful to socially responsible businesses that take care of patients when the state is not able to,” says Mykhailo, who was able to go on and realize his dream of becoming a lawyer.
The primary goal of our Humanitarian program is to deliver therapies, to the best of our ability, to patients with lysosomal storage disorders who have a demonstrated need in certain circumstances where treatment access is limited.
Olena says that today the situation with diagnosis and treatment of such rare diseases is much better than it was when their family faced the aftermath of being diagnosed with Gaucher disease. There is more awareness on the subject, the level of diagnosis is improving, and the government now increases the budget for medicines procurement annually. However, the need for treatment is also on the rise and often it can take a year after diagnosis before any treatment begins.
- More than 750 patients are currently receiving free therapy through Sanofi Genzyme Humanitarian programs
- More than 3,000 patients in 90 countries have received free therapy since the Humanitarian program began
- More than 300 patients have been receiving free therapy for 10 years or longer through these programs