“Everything to save your sight – let’s join forces”
The plight of people with genetic eye diseases has prompted this group of patients to mobilize and take action. They have taken a number of measures aimed, among other things, at having access to genetic testing, comprehensive medical care and specialized rehabilitation. An additional aspect that motivated them was the ongoing systemic changes in the field of rare diseases. The Retina AMD Polska association summarizes the activities carried out within the framework of the project “Everything to save your sight” and calls on experts dealing with public health issues and social policy continue to support their efforts.
In 2021, the Retina AMD Polska association launched the implementation of the “Everything to save sight” project. As part of large-scale activities, a multifaceted study, the result of which is the first report in Poland: “Social audit of the situation of people with genetic disorders of vision” describing their extremely difficult situation. This publication has become a source of inspiration for undertaking advocacy activities aimed at improving the situation of patients and starting a civic dialogue with representatives of institutions responsible for health protection and social policy.
“As part of our advocacy activities, we have gained a large group of allies. We held many meetings and interviews with people who have an impact on the healthcare system in Poland. We described to them our daily life and the issues we struggle with,” he says. Małgorzata Pacholec, president of the Retina AMD Poland association. “Although we are finding understanding and support, and changes are taking place in the health system to improve our situation, there is still much to do,” he adds.
There are currently no specialized centers for the treatment of rare genetic eye diseases in Poland. Patients face many difficulties: they have limited access to comprehensive care and necessary therapies. There is a lack of uniform treatment methods, national registers and a classification of rare diseases.
“The correct process of providing medical services should include appropriate diagnoses, medical treatment in accordance with current knowledge and available options, as well as providing the patient with recommendations and indications for further treatment” – emphasizes Marzanna Bieńkowska, Deputy Director of the Department of Social Dialogue and Communication, Tutor of the Patient Organization Council of the Office of the Patient Ombudsman. “Every patient should have access to services of a similar level,” he adds.
As part of the “Everything to save sight” project, the Retina AMD Polska Association has engaged and mobilized people with genetic vision disorders to try to improve their situation. In order to be well prepared to lead a social discussion, they took training in: leadership, participation and communication.
“Engaging patients in civic dialogue with people representing the health system, as well as sharing their experiences with the public, is a key role in the process of introducing system solutions that provide equal access to medical care for patients. suffering from rare diseases” – emphasizes Stanisław Maćkowiak, President of the National Forum for Rare Disease Therapy ORPHAN. And he adds that people with rare diseases expect equal opportunity, not special treatment.
Patients have great hopes for the implementation of the National Plan for Rare Diseases by the Ministry of Health. However, as noted by Małgorzata Pacholec, its implementation requires intensive work. One of the hypotheses of the document adopted is, among other things, the creation of a register of rare diseases. It is also one of the assumptions to which people with genetic eye disorders aspire. As he points out teacher. dr hab. not. med Anna Latos-Bieleńska, national consultant in the field of clinical genetics, head of the chair and department of medical genetics, Karol Marcinkowski Medical University in Poznan, the creation of such a registry is important not only for patients, but also for clinicians, scientists and health service planners. Such a census also has many functions: epidemiological, organizational, clinical, scientific and social. “Poland has a chance to be a leader in the field of rare disease registries”, he underlines teacher. dr hab. not. med Anna Latos-Bieleńska. “The rare disease plan is being implemented and we can hope that 2022 will be the year when the situation for patients with rare diseases in Poland will start to improve,” he predicts.
It should be noted that rare diseases require complex, time-consuming and expensive diagnostics. These are generally chronic and progressive diseases. It is therefore extremely important to establish referral centres. “In these institutions, doctors experienced in the diagnosis and medical care for people with a given rare disease have an appropriate diagnostic workshop” – recalls teacher. prof. dr hab. N. med Katarzyna Nowomiejska from the Department and Clinic of General and Pediatric Ophthalmology of the Medical University of Lublin. “So far, the leading center is the General Ophthalmology Clinic of the Medical University of Lublin, which in 2017, as the only ophthalmology facility in Poland, was admitted to the European Network of Reference Centers in the field of rare eye diseases (EU ERN -OEIL)” – she adds.
Until recently, the problem of rare genetic eye diseases was invisible to the health system and social policy. Patients appreciate the changes taking place, but they do not want to be passive, but actively influence the development of health policy in the field of ophthalmology.
“I am very happy that we were able to involve so many people with genetic diseases of the retina and their relatives. We do not stop in our actions! I believe that thanks to the fact that we have joined forces and started to firmly defend our right to diagnosis, to innovative treatment and to a dignified and active life, we will protect the young generation from the risk of blindness”, summarizes Małgorzata Pacholec.
The project “Everything for sight rescue” is funded by the National Fund for Active Citizens program funded by Iceland, Liechtenstein and Norway under the EEA Grants.
More information about the project and the activities implemented are available at: http://retinaamd.org.pl/.
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