Dear friends!
We are asking for your kind help. Maarja, who is 29 years old, needs a specific medication called Kaftrio to be able to make it through daily life. This drug costs a lot – 16 000 €. Unfortunately, the Estonian Health Insurance Fund does not fund its purchase as of yet.
“The Medicinal Products Committee held a meeting on 21.04.2022 and decided that the offered price of this medicine does not correlate with its benefit factor. This means that the Committee can only recommend funding the purchase of this medicine when the price becomes substantially lower.”
Kaftrio helps people suffering from cystic fibrosis improve their quality of life significantly and stabilize their health condition. For the medicine to have optimal effects, it has to be taken daily.
Maarja herself describes her conditions like this: „This disease mainly affects my lungs and because of this, breathing is very difficult for me (it’s like breathing through a straw). Everyday activities such as carrying a shopping bag, walking up the stairs, faster movement and other physical activities are difficult for me. You can even say that I can’t cope with them, because I have to choose between breathing or doing a specific activity.
The mentioned disease fills the lungs with thick mucus that I can’t cough up by myself and I’ve almost suffocated a few times because of it. My movements are often accompanied by hard coughing fits and pauses for catching my breath. I am constantly hospitalized and need strong painkillers, supplemental oxygen and handfuls of different medications…“
Cystic fibrosis is a hereditary disease which causes disruptions in exocrine glands and chronic lung injuries. It also damages the upper respiratory tracts – the nose and sinuses, causing chronic inflammation. Currently, there are about 50 people in Estonia who suffer from cystic fibrosis, and some are children. At present, their life expectancy is 40-50 years, depending on the severity of the disease.
Many people with cystic fibrosis need a lung transplant, which can increase their lifespan significantly. Maarja has been on a waiting list for a lung transplant since 09.05.2018. She had to miss one opportunity already, because a fungal infection in her blood made the operation impossible. The disease worsened in the beginning of 2022. After this, Maarja has been receiving hospital treatment almost constantly.
Thanks to your kind donations, Maarja received Kaftrio on 15.07.2022, but the supply lasted for just two months.
“After two months of taking the medicine, I can safely say that it is CRUCIAL. On Maarja’s Facebook page, there appeared posts where she was out having fun with friends and sentences such as “enjoying summer”. She was able to come out of her critical condition and not spend the second part of summer in a hospital.”
Two weeks after Kaftrio ran out, Maarja’s health condition has become visibly worse. At night, she requires extra oxygen, and since 20.09.2022 she is once again hospitalized.
Thanks to generous donators, we have been able to collect a few thousand euros, but in order to buy a full month of Kaftrio, we need at least 16 000 €. Ideally, those who suffer from cystic fibrosis should receive this medicine up until the moment of lung transplantation.
Dear friends, we are calling upon all of you to help purchase this vitally important medicine for Maarja. Kaftrio has been proven to be an amazing weapon in the fight against cystic fibrosis. Maarja’s life depends on our help: she is eagerly awaiting the chance to life her life to the fullest potential. We are tremendously grateful for every donation!
Thank you, kind donators! As of today, we have been able to collect over 27 000 euros. In combination with funds from the Janno Puusepa Fond MTÜ reserve, Maarja has been able to buy Kaftrio for two more months. We shall continue with the campaign, because time is ticking fast. We hope that we are able to secure the medicine for at least this whole year.
How can you help financially?
Bank transaction:
LHV Pank
EE167700771002598797
Swedbank
EE672200221046387155
SEB
EE101010220101993019
Coop Pank
EE074204278613542000
Beneficiary: Naerata Ometi MTÜ
Information: Abistame Maarjat
SMS donation:
SMS to number 13013 write Naerata abistamemaarjat for donating 1,6 euros
SMS to number 13017 write Naerata abistamemaarjat for donating 3,2 euros
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