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Healing Words: Expressing the Inexpressible Pain of Cancer Loss

By Sarah Akampurira

As we commemorate World Cancer Day 2024, my heart is burdened as I reflect on the loss of a dear one to cancer last year. I implore the government, private sector, and individuals to prioritize the creation of a supportive environment that ensures equitable access to treatment, information, and dignified care for all. The days of perceiving cancer as a distant concern are behind us; it now lives with us, impacting the very fabric of families and our social networks.

In recent times, cases of cancer have increasingly become common regardless of age, sex or any other demographics. In November 2015, Uganda rolled out free Human Papilloma Virus (PHV) vaccination for adolescent girls 10–14 years in its’ immunization schedule across all districts as a primary preventive measure for cervical cancer. Unfortunately, the uptake of HPV vaccination has been low across Uganda which may be due to limited knowledge and unverified information that spreads like wildfire on various media platforms causing fear and resentment among the users. As parents, let us embrace the HPV vaccination programme to ensure that our daughters aged 9 to 14 years are fully vaccinated before becoming sexually active to reduce their chances of getting Cervical cancer.

The 2024 World Cancer Day theme “Together, we challenge those in power” is a call to action for everyone stretching from Global leaders to double our efforts and deliberately work towards investment in cancer prevention and care to prevent early avoidable deaths due to loss of hope, and frustration related to cancer treatment. It is our responsibility to live healthy lives, exercise, eat right, and undergo routine medical check-ups to minimize the chances of cancer and once one is diagnosed, they should be facilitated to enroll in care for proper management.

The pain of seeing your loved one who has always been in charge of everything and everyone around her live in a situation of dependency for years, miss church sessions, work and always weak calls for support beyond the medical needs. When a parent is battling with cancer, family roles change, the other partner and children have to pick up those duties. The children start to act like adults and this becomes overwhelming at times balancing school, friends as well as taking on caregiver roles.

Witnessing a loved one, who has always been a pillar of strength, succumb to a prolonged state of dependency due to cancer is a distressing experience. Beyond the obvious medical requirements, there emerges a call for support that extends to the emotional and practical aspects of life. During the cancer battle, family dynamics undergo a profound shift, necessitating the redistribution of responsibilities among the partner and children. The children, forced into premature roles as caregivers, find themselves grappling with the challenge of juggling academic pursuits, social lives, and the weight of newfound responsibilities. The burden becomes overwhelming, highlighting the multifaceted impact of cancer on the intricate balance of family life. Psycho-social support remains a critical component in cancer care and management that should not only be limited to already identified clients but also the family members who in most cases shoulder the burden of care and support, live in a state of despair engulfed with fears of losing a loved one to the deadly cancer.

“Every single person has the ability to make a difference in the fight against cancer. Together, we challenge those in power to prioritise cancer management and neutralisation and ensure equitable access to cancer care for all.

Under the leadership of the Ministry of Health- Uganda, deliberate efforts should be invested in creating awareness, through various channels not forgetting media platforms right from the local communities to facilitate behavior change. It’s no longer business as usual. Let us normalize talking about cancer in its entirety during health education talks like any other disease this helps to minimize the fears and also helps the patients to open up and embrace help from friends, health professionals, counselors, and family members even though it may not be easy.

The writer is a Programme Coordinator for Community Empowerment at the Center for Health, Human Rights and Development (CEHURD).

 

Press Statement; CEHURD and Nakayima Fatumah V. The Executive Director, Mulago National Referral Hospital and Attorney General Misc Cause No. 327 of 2016.

After over 7 years of litigation, a positive ruling was delivered by the High Court of Uganda (Covil Division) in Miscellaneous Cause No. 327 of 2016, a case involving CEHURD and Nakayima Fatumah against the Executive Director, Mulago National Referral Hospital, and the Attorney General.

Court ordered that Fatumah be given a monetary compensation of UGX 50 million, given the psychological trauma she went through that affected her mental health and well-being.  Court also declared and ordered that the failure of the Hospital to give Fatuma her baby after birth and provide her with information concerning the whereabouts of her baby dead or alive, is a violation of her right to health.

Subsequently, we convened a press conference to disseminate the declarations and orders of the court to stakeholders.

Tap to Access >;  Press Statement; Fatumah case

Beyond Rhetoric: Let Us Address the Root Causes of Gender-Based Violence in Uganda

By Grace Awilli

In a parliamentary plenary session on November 23, 2022, the Minister of Gender, Labour, and Social Development passionately addressed the floor, commemorating the 16 days of activism against Gender-Based Violence (GBV). Despite the minister’s optimistic portrayal of government actions against GBV, the stark reality, as revealed by the National Survey on Violence Against Women (2021) and the Uganda Police Annual Crime Report for 2021, painted a distressing picture. An alarming 95% of respondents reported experiencing physical or sexual violence, and 16,242 cases of GBV were reported in the same year.

This fragility in GBV prevention and response efforts, showed an escalation in cases, particularly of teenage pregnancies and child marriages.

During parliamentary debates, Members of Parliament demonstrate fervent commitment by passionately voicing their concerns and the pressing need for the passage of pivotal bills, such as the Sexual Offences Bill, emphasizing their profound potential to address the pervasive issue of gender-based violence (GBV). The recognition of the bills’ significance in the fight against GBV reflects a collective acknowledgment of the legislative tools required to combat this societal challenge.

The importance of awareness creation regarding GBV emerges as a recurring theme, resonating with various stakeholders. Their collective emphasis underscores a shared understanding of the role education and advocacy play in fostering a culture of intolerance towards GBV. This recognition suggests a united front in promoting societal consciousness as an integral component of a comprehensive strategy to eradicate gender-based violence.

While the Ministry of Gender has championed laws such as the Domestic Violence Act and male engagement strategies, implementation remains a significant hurdle. The legal and policy framework aligns with international standards, but the non-implementation of these laws, policies, and strategies is the primary challenge. Government institutions tasked with GBV prevention lack resources, hindering their effectiveness.

The Child and Family Protection Unit of the Uganda Police Force, for instance, operates without a dedicated budget line, relying on district police leadership and partners for support. At the local government level, the under funding of the community services department, responsible for GBV data collection and non-state actor coordination, further impedes progress.

Critical to the resolution of the GBV challenge is a gender-sensitive justice system, essential for victim protection and holding abusers accountable. Unfortunately, Government institutions that are at the forefront of GBV prevention and response are constrained by limited resources and as a result, GBV prevention and response has substantially been left to Non-Governmental Organisations, which poses significant dangers.

It is crucial for the government to allocate adequate financial resources to ensure the effective implementation of existing legal and policy frameworks. As evidenced by the ownership and management of GBV shelters predominantly by civil society organizations, NGOs play a vital role in providing comprehensive care and support to victims.

Measures such as promotion of a gender-sensitive justice system, coupled with the passage of Witness Protection and Legal Aid laws, will protect vulnerable survivors during trials and ensure access to free legal support. The Parliament, in its legislative and appropriation function, can be the driving force behind these changes, ultimately improving GBV prevention and response in Uganda.

Concerted efforts to address the root causes of gender-based violence for a safer and more equitable society will go a long way in addressing GBV in our communities.

The writer is a lawyer at the Center for Health, Human Rights, and Development.

Moot Problem and Instructions for the 10th National Inter-University Constitutional Law Moot Court Competition

The Center for Health, Human Rights, and Development (CEHURD) expresses its gratitude to Universities that registered for the 10th National Inter-University Constitutional Law Moot Court Competition. The theme for this year’s competition is “Advancing Reproductive Health and Gender Justice in Uganda”

We are delighted to announce that the Moot problem and Instructions for the 10th Annual CEHURD Moot Court Competition are now available for download.

We extend our best wishes to all participants, wishing you the very best of luck in the competition.

#CEHURDMoot2023