HÜDA PAR submits parliamentary question on cystinuria medication supply
HÜDA PAR Batman MP Serkan Ramanlı has submitted a parliamentary question to the Grand National Assembly of Turkey, addressing the difficulties cystinuria patients face in obtaining essential medication.
In a formal question submitted to the Parliament Speaker’s Office, Ramanlı requested Health Minister Kemal Memişoğlu to provide written answers regarding the challenges encountered by cystinuria patients due to the Social Security Institution’s (SSI) suspension of payment for their medication.
Cystinuria patients require lifelong medication to prevent kidney stone formation caused by ystine production, but they are currently facing severe obstacles in accessing this treatment.
Ramanlı highlighted that patients must use drugs to inhibit cystine production, but the SSI has stopped providing the medication, citing price increases by the manufacturer. As a result, patients now bear the substantial cost of 1,800 Euros per package of Thiola, with adult patients needing approximately 10 boxes per month.
The parliamentary question posed three specific queries:
1. Will the SSI resume supplying the necessary medication for lifelong treatment of cystinuria patients?
2. Given the genetic nature of the disease, affecting multiple family members, what alternatives are proposed for those unable to afford the expensive Thiola drug through personal means?
3. How does the Ministry plan to prevent constant surgeries and the risk of kidney loss for patients unable to find or afford the medication?
Ramanlı noted that approximately 30,000 patients in Türkiye need this medication, and he questioned if these individuals, struggling with kidney problems, will be left to face life-threatening consequences without access to essential treatment. (ILKHA)