For women in Mitrovica, facing cancer is not only a physical and emotional burden but also a battle of access to health care. With no oncologist to be found in the municipality, patients must travel to Pristina for routine consultations, treatments and therapies. For many, especially those already bearing financial and emotional strains, this journey represents an additional layer of hardship in an already difficult fight.

In response to this issue, the Centre for Education and Community Development (CECD) carried out an initiative aimed at engaging cancer survivors in advocating for enhanced access to health services, while also raising awareness among women and girls about the importance of early detection and preventive treatment.

Breaking the Silence around Cancer

Cancer remains a sensitive topic within most communities. Survivors are stigmatised, choosing not to speak about their experiences or expose the health care system. CECD recognised that creating safe spaces for women to speak for themselves was the beginning towards collective change.

In 12 workshops held during six months, CECD worked with a total of 208 participants. Both legal and medical expertise were provided, allowing women and girls to become aware of their rights as patients. The workshops facilitated open dialogue, breaking the silence surrounding cancer.

“I finally realised that being refused an analysis or treatment is not only bad luck, but a rights violation,” said one participant. “Knowing that I can insist on being informed and even complain makes me feel less helpless.”

Documenting Rights Violations

A central focus of CECD’s initiative was to identify and document cases in which health care rights had been violated. Participants readily shared experiences of being denied basic services, unreasonably long waits to receive care, and the expenses of paying for private tests.

There were 18 violations in total, including reports of women being refused blood tests, infusions or mammography, despite available equipment. Survivors also reported being compelled to purchase vitamins or medication on their own, placing an unfair financial burden on already vulnerable families.

With the help of a legal advocate, five of the cases were formally drafted as legal complaints. This marked a significant shift as for the first time, women in Mitrovica were not only sharing their experiences but actively asserting their rights. It was not easy to make these complaints. For many survivors, threats of revenge or refusal of future services silenced them in the past. But with CECD’s help, they found the courage to speak up.

“This project gave me the confidence to tell my story without fear,” one woman stated. “I learned that reporting isn’t about me, but about every other patient that comes along after me.”

Raising Awareness About Cancer and Early Detection

Apart from legal empowerment, CECD also focused on prevention. Six information sessions were organised, with 135 girls and women participating. Led by health professional Merita Haradinaj Feka, the sessions focused on the prevention of breast cancer, the importance of early detection and regular screening and mammography.

The sessions were centred around both medical and cultural matters. Some of the participants admitted that they had avoided screenings due to fear or stigma. By creating a supporting environment, CECD helped participants understand that regular checkups could be lifesaving.

Agime Sogojeva, herself a survivor and a community leader, emphasised taking these activities into rural and faith communities. Women in these settings are least educated but face equal risk, she noted, stressing the need for further outreach in future programs.

Building Bridges with Institutions

CECD did not just raise awareness and file complaints but also worked directly with institutions. They facilitated meetings between survivors and municipal officials, including the Director of Health and the Director of Finance in Mitrovica. These sessions provided survivors with a space to engage directly with officials and push for an oncologist to be based in Mitrovica. The women, who had never before spoken to authorities, felt empowered and began to see themselves as advocates rather than just survivors. The advocacy resulted in the Directorate of Health starting to provide financial support for women battling cancer, ranging from €200 to €500. This paid for essential costs such as traveling to Pristina and buying medication.

Towards Sustainable Change

The six-month project might have been a short one, but its effects are long-lasting. CECD’s activities demonstrated that survivors, when educated, organised and supported, can hold institutions accountable and push for the system to act.

“Before, I used to think that complaining was pointless,” said one survivor. “Now I see that it is my right, and I will not hesitate in the future.”

CECD’s Initiative “Cancer survivors advocate for the improvement of health and oncology services in the Municipality of Mitrovica” was carried out with support from the Kosovo Women’s Network’s (KWN) Kosovo Women’s Fund (KWF), financed by the Austrian Development Agency (ADA) and co-financed by the Swedish International Development Cooperation Agency (Sida), in the amount of €5,000, from June to November 2023. The initiative contributed directly to KWN’s Programme “Right to Health”.