1. SSPE is a disease that you 'run against' over time. Therefore, social, economic and psychological support must be improved for families and especially for those who are burdened with caring. There are about 2,000 SSPE patients in Turkey who will lose their lives very soon without proper treatment methods. A comprehensive social policy should be implemented against this disease, which is seen as a result of not using the measles vaccine in a timely, correct and appropriate manner. Currently, people with SSPE and their families are struggling with a dependent life and countless challenges.
2. The continuation of treatment studies for the disease, supporting institutes and professors conducting research in this field, developing collaboration between the Ministry of Health, TÜBİTAK, and TÜSEB for the treatment of SSPE, and providing the necessary budget should be ensured. The Ministry of Health and other relevant ministries should periodically inform the public about the studies conducted in this regard. Information has been publicized that the Ministry of Health withdrew its initiative on this matter.
On 18 October 2021, the TUSEB opened the title of the scientific research project for the treatment of SSPE disease, and the deadline for submission was set for 2 December 2021. As family members for whom SSPE disease is at the centre of their lives and who are constantly fighting for these patients, valuable discussions and studies were conducted with our doctors and relevant academics, resulting in at least 2 project applications. While the families of SSPE patients were eagerly waiting for the projects to be accepted and efforts were made to find a solution with public support and the contributions of valuable scientists for the disease, the Ministry stopped the initiated project. The Ministry stated that the project title was not approved and the reason for non-approval was explained as 'NO STRATEGIC AND NATIONAL CONTRIBUTION TO OUR COUNTRY' We emphasise that the right to life of children waiting to die is more important than any strategic issue. In co-operation with TUBİTAK-TUSEB and other relevant institutions, a solution to this problem should be sought before our children die. The lack of a medical and scientific solution leads families to resort to unscientific methods, and sometimes this situation can jeopardise the lives and health rights of children.3. In areas where SSPE is widespread, it is important to ensure the accessibility of paediatric neurology and other relevant departments. It is necessary to allocate an adequate number of doctors for early diagnosis and monitoring of the disease. People with SSPE and similar diseases may not be able to attend health and educational institutions. Existing legal regulations should be further developed so that people with the disease can use these facilities in a healthy manner.
4. Reimbursement for SSPE patients is inadequate, and the reimbursements from the Social Insurance Institution (SGK) are significantly lower than the market prices for goods and services. For example, the nappy allowance paid by the SGK only covers about a third of the actual costs. The costs of medication, baby food, vitamins and medical examinations represent a considerable financial burden for SSPE patients and their families.
When caring for children/adolescents/adults affected by diseases with unknown treatments such as SSPE, it is essential to ensure the provision of the necessary medical equipment, tools, lifts and similar items for mothers whose bodies become deformed during care. Measures must be taken to facilitate the acquisition of medical supplies and allow those who do not need them to share them and ensure that they are used properly.The lack of essential technical equipment (such as medical beds, chairs, etc. for proper positioning) for feeding SSPE patients is a problem for families. Failure to fulfil some basic needs, such as bed protection, wet wipes, etc., is a major challenge for families. There is a need to reconnect nappy procurement to the SSC as before and increase support as prices have increased due to the rise in the exchange rate.5. In families where individuals, especially children/adolescents/adults, are affected by diseases with unknown treatments such as SSPE, the necessary precautions should be taken to provide regular and periodic psychological support to all family members, especially mothers. Rehabilitation programmes should also be offered as part of this support. Education and support are crucial to raise awareness of caregiving and the disease. Given the uniqueness of the situation, parents may not feel adequately equipped to deal with the challenges.
In addition, efforts should be made to facilitate the employment of the parent or family member who has been involved in intensive care for nearly 20 years and provision should be made for pension entitlements at the end of this process. Regular breaks and psychological support programmes for parents should be organised.6. In the context of COVID-19 conditions and beyond, it has been shown that people with SSPE are at higher risk of infection. In this context, the provision of nursing, physiotherapy and other support services becomes a challenge and the inadequacy of related support services is evident. To address this, physiotherapy services, reporting and other support services should be provided through home visits, and renewal of medication and related reports should be provided by a mobile team or online support. Regulatory measures are needed to ensure that people who need physiotherapy can access it at home so that they can benefit from healthcare services in a healthy way.
7. There is a need to ensure that care fees and allowances for those with severe disabilities such as SSPE are treated independently of household income or are not reduced if there is a small surplus, that these procedures are carried out from home and that parents who provide care are prevented from being taken out of the household for known procedures. Legislation should be put in place to allow people who are responsible for care fees over a long period of time (7 years or more), especially those caring for seriously ill patients, to retire. For mothers who remain excluded from social and professional life due to caring for their bedridden and dependent children with SSPE or similar illnesses, even if their children have died, it is necessary to secure pension entitlements by paying social security contributions from the public budget or from subsidised funds.
8. Outpatient requests for SSPE patients should be dealt with promptly, especially by providing professional support during hospitalisation and examination processes to avoid possible injuries and other difficulties.
9. Families who go through years of intensive care processes need additional socio-economic and psychological support. Leaving these families, most of whom are also struggling with poverty, alone during this time can lead to intergenerational poverty and leave the entire family as victims.
10. For patients who rely on electrically powered devices, it is necessary to provide charging and generator services against power outages or to ensure special notifications for power interruptions. A public support policy should be introduced for the procurement and repair of these devices, most of which are imported.
11. Initiatives should be taken and legislation introduced to open up public employment opportunities for people from families with low economic status and the chronically ill. Another major problem for these families is the impoverishment resulting from the burden of care. To prevent this impoverishment, it is necessary for one person from the household to be employed in the public sector. Since the number of SSPE patients is very limited, such an arrangement not only serves the public interest, but also does not burden the public budget and prevents a household from losing wealth.
12. Initiatives are needed to provide interest-free loans and first home purchase relief for people without homes and with chronic illnesses. Alternative support options and solutions to housing problems should be found for households that are tenants.
13. The Ministry of Family, Labour and Social Affairs, together with the Ministry of Health, should increase and continue the additional support allowance for SSPE and tuberculosis patients (VEREM).
14. Patients with chronic illnesses should not only be entitled to exemption from fees for medical examinations with their contract doctor, but with all doctors. They should also be exempt from all deductions for medication.
15. For families affected by preventable deadly diseases such as SSPE, arrangements should be made to ensure the education of other children in institutions such as Darueşşafaka and that these children are prioritised for scholarships.
We expect a solution, a treatment and hope against the melting away of our children before our eyes, despair and helplessness.