Good News from the Social Security Institution for SMA Patients! Medicines Will Be Provided Free to Patients
What Is Spinal Muscular Atrophy (SMA)?
Spinal Muscular Atrophy (SMA) is a rare genetic condition that can lead to severe muscle weakness and, in its most serious forms, early infant death.
What Are the Symptoms of SMA?
SMA is a disease that affects motor nerve cells. When these nerve cells deteriorate, the nerves that control muscle movement are compromised, causing muscles to weaken and waste away. The condition can leave patients dependent on bed rest and has several clinical types. The most severe and life-threatening form is known as SMA Type 1. Signs of SMA Type 1 often appear during early childhood and can be observed clearly. While the disease commonly affects newborns and infants, symptoms can also emerge later in life. Consanguineous marriages can increase the likelihood of transmitting the responsible genes.
Is There a Treatment for SMA Type 1?
Treatment for SMA often includes the drug SPINRAZA (12 mg/5 ml, 1 vial). The cost of a single dose can be extremely high. In response to calls for support, the Ministry of Health and the Social Security Institution (SGK) have acted to make the treatment available. A decision to include this medicine within SGK coverage has been published in the Official Gazette and is now in effect. The drug is now covered under SGK and exempt from patient co-payments. Initially, medicines were supplied for a limited number of critically ill infants.
Which Patients Are Eligible for SMA Medication?
This coverage applies to patients diagnosed with SMA Type 1. According to the Ministry of Family, Labor and Social Services, the Ministry of Health will determine which patients will be granted access to the medication and will evaluate whether the treatment achieves clinical effectiveness for the treated patients.
How Can Patients Obtain the SMA Medication?
Medications used to treat SMA Type 1 must be prescribed by a pediatric neurology specialist. For the first four administrations, a health board report valid for three months is required; for subsequent administrations, a six-month health board report is needed. Based on these reports, the “Drug Use Approval” will be issued by the Ministry of Health’s commission that evaluates use of medicines in individual treatments. The pediatric neurology specialist will then write a separate prescription for each administration.
If the “Drug Use Approval” is issued for the first four administrations at once, and then separately for each subsequent administration, the cost of those doses will be covered by the Social Security Institution.
Will SGK Also Cover Medicines Used Inside Hospitals?
If the drug is used in accredited tertiary healthcare facilities that have neonatal or pediatric intensive care units, pediatric neurology specialists on staff, and services such as nutrition and dietetics and physical therapy and rehabilitation, the cost will likewise be paid by SGK.
The medication requires cold-chain transport and storage. To avoid delays in delivery from abroad and to ensure the medicine reaches the treating healthcare institution, the Social Security Institution will handle procurement and transport logistics for each patient.