We agree that advances in modern oncology have significantly expanded the possibilities for diagnosing and treating breast cancer. Targeted therapy, immunotherapy, genomic testing, and personalized medicine are playing an increasingly important role in determining individualized treatment strategies. However, scientific progress alone does not ensure access to treatment for patients. The clinical value of innovative approaches can only be fully realized when patients have timely, equitable, and affordable access to them.
The experience of Georgia and the Caucasus region demonstrates that implementing international medical standards in practice is not solely a clinical issue. It is closely linked to healthcare policy, funding mechanisms, administrative processes, and the ability to respond to patients’ needs. In this process, patient organizations play a particularly important role, as they can turn patients’ experiences into a basis for systemic change.
The development of cancer care involves several interconnected stages: international scientific evidence informs clinical guidelines; guidelines influence national policy and clinical practice; national policy determines funding priorities and mechanisms; and the funding system largely determines which treatments patients can access in real-life settings.
Despite these logical connections, significant gaps remain between scientific evidence and practical access. A diagnostic method or treatment recommended by international guidelines may not be fully integrated into the national funding system. Furthermore, the formal availability of funding does not always mean that patients can start treatment on time and complete the full course.
Therefore, when assessing the quality of cancer care, it is essential to determine not only what is medically recommended, but also how accessible the recommended services are to patients.
The Role of Patient Organizations in Strengthening the Healthcare System
Patient organizations are often viewed as providers of emotional, psychosocial, and practical support. This work is an important part of patient-centred care, but their role extends beyond these services.
Patient organizations systematically collect information about patients’ needs and experiences, identify barriers to diagnosis and treatment, and facilitate cooperation between patients, clinical specialists, decision-makers, and healthcare authorities.
One of their most important functions is identifying systemic problems through individual experiences. When different patients encounter the same obstacle, this may indicate not merely an isolated incident, but a gap in the healthcare system that requires an appropriate response.
In this way patient organizations help transform patients’ needs and experiences into evidence-based advocacy. Their involvement is particularly important in developing funding policies, assessing access to healthcare services, and monitoring the practical impact of decisions.
Personalized Medicine and Access to Genomic Testing
Personalized medicine is one of the important areas of development in modern oncology. Its aim is to select treatment based on the biological characteristics of the disease and the individual patient’s clinical condition. As this approach develops, diagnostic tools that help assess the potential benefits of treatment are becoming increasingly important.
One example is the 21-gene recurrence risk test, which may be used in selected patients with early-stage, hormone receptor-positive, HER2-negative breast cancer to assess the potential benefit of adjuvant chemotherapy and support treatment decisions.
It is important to note that this test is not necessary for every patient. Its use should be based on specific clinical criteria and an individual assessment. However, when testing is clinically appropriate, its high cost creates a significant financial barrier for patients.
This highlights one of the key challenges in modern oncology: although medical technologies make it possible to select treatments more precisely and avoid unnecessary interventions, patients may not have access to the diagnostic tools that support optimal treatment decisions.
Consequently, the development of personalized medicine must be considered not only in terms of technological progress, but also in the context of equitable access to diagnostic services.
Patient Advocacy in Georgia: Experience and Progress
One important area of patient advocacy in Georgia has been expanding access to targeted treatment for breast cancer.
Between 2016 and 2019, Europa Donna Georgia’s advocacy efforts focused on expanding access to trastuzumab for patients with HER2-positive breast cancer. Initially, attention was directed towards the needs of patients at different stages of the disease. In 2018, the Do Not Discriminate campaign highlighted inequalities in access to treatment between different regions of the country. This issue is particularly important for patients whose treatment options may depend on where they live and whether appropriate medical services are available in their area. Subsequent advocacy efforts focused on expanding access to treatment nationwide.
As a result of successive advocacy initiatives, Georgia gradually achieved almost 99% coverage of cancer treatment through public funding.
When assessing this experience, it is important to distinguish between specific changes achieved through advocacy and broader systemic outcomes that may be influenced by several factors. This approach supports a credible, evidence-based assessment of the work of patient organizations.
Funding for a medicine does not, in itself, mean that patients can receive the full course of treatment. Funding mechanisms must be aligned with clinically recommended treatment and address patients’ needs at different stages of disease management.
Immunotherapy provides one example. For certain forms of triple-negative breast cancer, pembrolizumab is part of neoadjuvant and adjuvant treatment when clinically indicated. In these cases, access should not be assessed solely by determining whether the medicine is funded. The full treatment regimen and the patient’s ability to receive the recommended therapy must also be considered.
In the treatment of HER2-positive breast cancer, the expansion of access to trastuzumab demonstrates how patient advocacy and the involvement of many people in seeking solutions to shared challenges can help improve access to targeted therapy and create new opportunities for patients.
These examples demonstrate that healthcare policy must be assessed by considering two issues together: whether funding is aligned with current clinical standards and whether patients can actually receive the recommended treatment.
Towards a Patient-Centred Healthcare System
The work of patient organizations is not limited to psychosocial and practical support. They can systematically document patients’ experiences, identify recurring problems, and use this information to help improve healthcare policy.
An important part of their role is facilitating cooperation between patients, doctors, healthcare authorities, and decision-makers. In this process, the patient’s voice represents not only an individual need, but also a potentially important source of information for identifying systemic gaps.
Effective advocacy requires the documentation of specific problems, the development of evidence-based recommendations, and the assessment of the practical impact of decisions. This approach enables patient organizations to contribute to healthcare reform not only by presenting demands, but also by proposing well-supported solutions.
Our experience demonstrates that patient organizations’ participation in decision-making should be based on partnership. Their involvement is important during the development of policies, their implementation, and the assessment of their impact on real access to treatment.
Patient advocacy is most effective when it follows a systematic approach. This involves listening to patients’ experiences, documenting recurring barriers, collaborating with clinical specialists and decision-makers, advocating for evidence-based funding, and monitoring the results achieved in practice.
When funding does not fully cover recommended treatment and disease monitoring, patients and their families may face additional financial burdens. This can affect their ability to start treatment, continue therapy, and complete the full course of treatment.
The success of innovation is determined not only by its scientific value, but also by whether patients can access the treatment recommended for them at the time they need it. Patient-centred healthcare policy should aim to translate international medical standards into real opportunities for everyone who needs them.
Ultimately, for us as patients, the value of innovation is determined not only by its scientific value, but also by whether patients can benefit from it when they need it. Closing the gap between global scientific evidence and real access to treatment must therefore be one of the main objectives of patient-centred healthcare policy.
Author: Zhanna Babunashvili, Europa Donna Georgia, Caucasus Onco Society HOPE
