Abstract:
Context. Access to quality healthcare services remains a critical issue for individuals affected by
cancer in Moldova, the same as worldwide. Aside from the efforts of national health systems,
cancer patient organizations can play an essential role in advocating for improved healthcare
policies, concurrently providing direct support to those in need. Understanding the importance of
harnessing this experience, WHO developed a framework for the meaningful engagement of
people with NCDs, to help co-create and enhance related policies, programs and services. In
Moldova, this pathway is followed by ”Viața fără leucemie” (engl. Life Without Leukemia, LWL)
an NGO uniting parents of children diagnosed with cancer.
Methods. To better understand the needs and challenges of cancer patients, whether children or
adults, surveys are the major tool to capture real experiences and firsthand insights from
individuals. In this respect, LWL has conducted a survey among the parents of children with cancer
from Moldova aiming to better understand the barriers in accessing healthcare services by pediatric
cancer patients, while relying on the data communicated by healthcare providers and policymakers
during interviews. At a broader level, a global online survey on the lived experience of people
affected by cancer was performed by WHO, aiming to identify existing barriers and
implementation gaps in provision of integrated, people-centred health services for this population. Results. Findings indicate that cancer has a significant impact on individuals and families,
highlighting the psychological, financial, and social challenges they face. Financial burden, access
to healthcare, and the need for better psychosocial support are key concerns revealed by the
participants both on the global as well as on the national level. On a broader landscape, as an
example the report summarizing Romania lived experience of cancer, based on the aforementioned
WHO survey, reveals that most participants experienced significant emotional distress and
financial strain, with over half reporting the spent at least 50% of their monthly income on
healthcare costs, public healthcare services were major concern, with many relying on private care,
which is expensive. The findings of the national survey, on the other hand, revealed drawbacks in
access to healthcare services by children with cancer in Moldova caused by insufficient
institutional collaboration, as well as deconcentration of services as being one of the causes for
delayed provision of necessary healthcare.
Discussion. The results highlight the transformative potential of incorporating lived experiences
in healthcare reform. In this respect, cancer patient organizations can serve as vital agents of
change, addressing gaps in the healthcare system through increasing awareness and advocating for
more inclusive policies, while facilitating patient support networks. In Moldova, LWL is now
included in the Administrative Council of the Oncological Institute, the only state hospital in the
country treating patients with cancer. Also, the organization is an active part of the world initiative
facilitating the provision of free medication for children with cancer in Moldova.
Strengthening partnerships between patient organizations, healthcare providers, and policymakers
can lead to a more equitable healthcare environment. Future efforts should focus on increasing
institutional support, securing sustainable funding, and promoting greater patient participation in
decision-making processes. A patient-centered approach enhances care quality and ensures
healthcare systems meet the real needs of those affected by cancer.