Thalassemia sufferers stage a sit-in protest to attract consideration to the drug scarcity they face
Thalassaemia Affiliation is holding a 5-hour sit-in protest in entrance of the Ministry of Well being in the present day with the intention to draw consideration to the drug issues they expertise and to specific their calls for.
Earlier than the sit-in protest to be held between 10.30-15.30, Affiliation officers and sufferers made a press assertion about their issues in entrance of the Thalassemia Heart.
Affiliation officers argued {that a} drug that has been used for 20 years and whose effectiveness has been confirmed many instances in worldwide congresses is needed to get replaced with an equal drug that has simply been launched to the market and has not confirmed itself. They drew consideration to the dangers of the brand new drug and known as on the federal government to take the correct steps.
“We don’t belief the brand new drug, we have no idea its results and unwanted side effects.”
Talking on the motion, the President of the Affiliation, Çiğdem Beşevlerli, stated that they might not entry a drug that responds very nicely to the remedy of Thalassemia sufferers and has been used within the nation for years, as a result of it has not been delivered to the nation in latest months, and emphasised the significance of this drug, which has introduced life to many sufferers.
Arguing that they’re at present buying remedy from one other firm for remedy, Beşevlerli acknowledged that, as sufferers, they don’t belief this remedy, and that data equivalent to who has used the remedy in query earlier than, what results and unwanted side effects it has is unknown.
Beşevlerli stated, “In our remedy, we need to use medicine that we all know and belief and that reply nicely to our remedy.” stated.
Stating that Thalassemia sufferers want blood transfusion and common use of those medicines with the intention to stay their lives in a top quality means and serve this society, Beşevlerli acknowledged that the common age of individuals with this illness within the nation is excessive and so they need to spend the remainder of their lives comfortably, taking their medicines.
“Beginning a brand new drug is a threat for all sufferers”
Secretary Normal of the Affiliation, Sertunç Tuncel, additionally took the ground and shared their unhappiness about not accessing the critically essential drugs that is superb for sufferers within the nation, and famous that beginning a brand new drugs is a threat for them.
“The truth that even one individual can not take that drugs resulting from a aspect impact is an issue for us, it’s a downside and on the finish of the day it has deadly results.” Tuncel emphasised that if a drug that has been used for 20 years is needed to be modified, the equal drug will need to have confirmed itself.
Tuncel acknowledged that they need to name on the Ministry of Well being to not change their medicines with their motion.
“Solely 90 individuals use this drugs. The state ought to have the ability to provide this drugs to 90 individuals.”
Ahmet Varoğlu, a member of the Board of Administrators of the Affiliation, stated that none of them had used this equal drug delivered to the nation earlier than, however regardless of this, a young was made for this drug once more.
Varoğlu argued that the choice to buy drugs was made based mostly on value, and that though sufferers expressed their issues to the Ministry many instances and stated that they’d not settle for the brand new drugs whose security had not but been confirmed, their statements weren’t taken under consideration and stated, “We actually have no idea what to do proper now.” stated.
Criticizing the view of well being by means of monetary means, Varoğlu acknowledged that they see entry to secure drugs as an indispensable a part of the well being system, and famous that 90 of the 150 Thalassaemia sufferers within the nation use this drugs recurrently, and that they imagine that it shouldn’t be a giant downside for the state to produce this drugs to 90 individuals.
After the press launch in entrance of the Heart, the sufferers went to the Ministry of Well being and began their sit-in protest.
In the course of the protest, banners saying “No financial savings in healthcare”, “High quality remedy is our most pure proper” and “We now need unique drugs” have been additionally opened.
