Health insurance refuses to pay for the food mixture that is needed for toddlers life

Since the milk mixture, that is needed for Albiina with a rare metabolic disease, hasn't been registered in Estonia as a drug,the state leaves 260-euro monthly outgoings to a family. Due to the rare disease the parents of  those who need the special milk mixture must pay each month from their own pockets hundreds of Euros or rely on charity.  

 

Maybe the state will start to think, when some child dies of it,  told two- year old Albiinas father Vitali Plsekov in concern. By under ,,it’’ means the man rare genetic metabolic disease, which was discovered his daughter last year. Though brown eyed Albiina looks like a perfectly healthy child, due to this disease for preventing health problems she needs to be throughout her life on a meat free diet and drink a special milk mixture. Until there is mixture, she shouldn´t have any health problems to his fathers knowledge.  

 

Families with two children, whose main source of income is on a railway working fathers salary, do not have 260 euros per month to buy milk formula. Last fall Tartu University Hospitals Childrens Fund stretched out a helping hand and decided to take over the supplying of the mix of Albiina and two other children suffering of the same illness. Initially during one year. 

 

Albiinas family with their treatment doctor  has recuested the Health Insurance Fund, Drug Adminitration and as well as from the state for support in the matter with no avail. The Health Insurance Fund explained that they can´t compensate mixture costs  because this milk mixture Monogen is not registered as a pharmaceutical. 

 

 

Last summer, the health insurance Fund made a proposal to socialministry to amend the law to improve accessibility of needed medicines for genetic metabolic patients. In the Medicine Act of Law the drug definition- namely the law says  among other things that the medicine can be considered as a substance which is intended to prevent a disease or disease symptom. In case Albiina doesn´t get her mix over a longer period of time could lead to lack of energy, which can also lead to a life- threatening condition.  

 

At the end of February came into effect change in law, with what a number of medically used special foods  were added to the list of compensatable drugs. To add the food mixture to the list, should the manufacture company hand in a corresponding application to the social minister. "Usually, treatment is accompanied by the declaration with a lot tougher restrictions," said Deputy Director of the Drug Agency Ott Laius.

 

Despite Albiinas severe disease rules a happy mood at her house. Dad says that there is no reason for complaining at the moment because thanks to Tartu University hospitals Childrens Fund they are not a alone in their concern. Childrens Fund has gathered large amounts of aid for sick children with a variety of projects and events and already in september takes place another charity event, Emajõe riverside flee market, selling the artifacts of famous Estonian people. Children`s Fund has also promised that if by the end of the support period Health Insurance has not still added Albiinas food mixture among beneficiary drugs then the period will be extended. At the same time lack of states support makes a sick childs treatment continuation dependent upon the kindness on donators. 

I don´t know how to thank these helpers,”said Vitali Pleskov. "Maybe we could do without- just save from somewhere else, but barely. I can't still believe that there are such kind people, who do something good, getting nothing in return. And right here - in Estonia!“

 

 

 

On Tartu University hospital genetics center pediatrician Mari- Liis Uudelepa explanation was Albiina diagnosed inheritable metabolic disease which case an enzyme that usually grades fatty ascids in the cells doesn´t work. Because of that organism cannot use fats that are in the food nor in the fat tissue to produce energy. 

 

Normally, the body uses mostly sugars as the primary source of energy.If sugar supply is reduced, it becomes vitally important to produce energy from fats, "said Uudelepp and added that if the body is unable to produce energy in fatty acids, can quickly become life-threatening state of crisis of consciousness disorder, and lead to organ system failure.

Small children may it be triggered by a very mild virus or longer food break during night,” said the doctor. "Leaving the disease untreated over a longer time, will accur mainly liver-, heart-, muscular and retinus damage. Chilren may become blind, need a wheelchair for moving and they will emerge heart- and liver failure. “

 

According to Uudelepa the problem is that this disease is often asymptomatic. "This condition can progress so rapidly that medical care can not, unfortunately, always save these kids," he said.