Odessa Daily publishes an open letter from the head of the BF "JETTY FOR YOU" FRIENDS! !! !! PLEASE ENJOY YOUR SUPPORT! !! !! MAXIMUM REPORTS! !! !! !!.

At the moment, our organization is extremely concerned about the tender that was not held on the purchase of enzyme preparations for patients diagnosed with Mucoviscidosis (hereinafter referred to as CF) in Odessa and the region.

Cystic fibrosis is a very serious hereditary disease. The main consequences of CF - pulmonary fibrosis and liver cirrhosis, most often inevitably develop in patients under 20 years. Concomitant diseases - diabetes, arthrosis of joints, chronic sinusitis, aspergillosis of the lungs and much more.

So really, to such a difficult fate, we will add more and additional serious consequences from taking an unsuitable drug? ? ?.

In Odessa in 2017. all patients were provided with the enzyme preparation "Creon".

Enzyme preparations are preparations replenishing insufficient or absent function of a pancreas of patients with CF.

In 2017. for our patients, the preparation "Creon", was replaced by the drug "Panzinorm".

We have done a lot of work to study the "Panzinorma" with the involvement of the best specialists in the treatment of CF of different countries of the world. The opinion of physicians is unambiguous - Panzinorm is CONTRAINDICATE to children with CF at the age of up to 15 years due to the fact that the skin of the drug contains methacrylic acid, which leads to the development of fibrosing colonopathy (a serious condition that blocks the intestine and leads to a large operation) in those who take higher doses of enzymes, and these are the patients with CF. The drug is not approved by the FDA, and nowhere in the world is it used to treat patients with cystic fibrosis before age 15 or in severe cases, and even more so if the child has fibrosis, cirrhosis ....

If you buy the drug yourself - it's from 5000 UAH per month. Take this drug should be constantly, for life.

In addition, I have repeatedly asked to change the wording of the drugs in the program "Health", because for patients with CF, not one enzyme preparation "Creon" is needed, but different drugs (hepatoprotectors, mucolytics, antibiotics). Very often patients are denied medications such as "Pulmozim" (active substance: dornase alpha), "Kolomycin" (active ingredient: sodium colistimethate), the course of treatment is 10-20 thousand hryvnia.

On public procurement, these drugs are not purchased in full or are not purchased at all because of which patients remain without proper treatment, which leads to frequent hospitalizations or worsening of the patient's state of health.