Centre for Health Human Rights and Development (CEHURD) started a pilot small grants initiative to support innovative projects among the membership of CSMMUA and the Community Health Advocates with the aim of supporting members to address the recommendations from the Advocacy Capacity Assessment and to strengthen grassroot advocacy. The Coalition to Stop Maternal Mortality due to Unsafe Abortion (CSMMUA) which was established with a mission to ensure that Uganda’s Legal and Policy framework advances and reproductive health and equity for women and girls.
For this second year for the small community grants initiative, CEHURD will award small grants of between one thousand (1000) to five thousand (5000) USD to institutional members of CSMMUA and Community Health Advocates (CHAs) through an unsolicited/competitive process. The small grants are primarily for one-off innovative projects, with a duration of no more than six months. We are thus calling upon all suitable applicants to submit their proposals for these subgrants.
The main objective of this subgrant under the project is to prevent and/or reduce maternal mortality due to unsafe abortion and other causes in Uganda, especially at the community level. This is in order to reduce abortion stigma and increase access to safe abortion services.
The Centre for Health Human Rights and Development (CEHURD) is an indigenous non-profit organization advancing health rights for vulnerable communities through litigation, advocacy and research. Over the past 12 years, CEHURD has been focused on advancing sexual reproductive and health rights in Uganda through movement building, campaigns, national level and sub-national level advocacy and capacity building as well as empowering communities to demand for their human rights.
Multi-drug-resistant tuberculosis (MDR-TB) is a major public health hazard on a global scale. It is a kind of tuberculosis (TB) infection caused by bacteria that are resistant to treatment with at least two of the most powerful first-line anti-tuberculosis (anti-TB) medications. This is caused by non-adherence to the treatment regimen or poor prescription. In 2018, there were over 484,000 cases of MDR-TB recorded around the world, which contributed to 44.21% of deaths caused by tuberculosis. Over 62% of these instances were not treated, which is more than half. Noteworthy, the treatment of MDR-TB is much more expensive than the treatment of susceptible TB. In Uganda, various health challenges impede the scale-up of Drug-Resistant Tuberculosis treatment and care, treatment is either inadequate or lacking and in some cases, diagnosed patients delay on the treatment waiting list. Having one or more drug stock outs in health facilities treating susceptible TB was significantly associated with the risk of developing MDR-TB which has been noted as one of the factors contributing to poor outcomes and risk of developing drug-resistant TB, especially in rural communities.
Women diagnosed with MDR-TB are more vulnerable to low mental and social well-being than men. Married women and women of childbearing age are most vulnerable to MDR-TB’s socio-economic, and mental health consequences, such as isolation, financial difficulties, and despair. Besides the intricacies and length of treatment, psychosocial difficulties frequently aggravate MDR-TB. It is essential to broaden patients’ access to psychotherapy and other forms of mental healthcare while they are undergoing treatment for MDR-TB.
The reproductive and parental roles of women and mothers compound the difficulties they already face in coping with, remaining adherent to, and ultimately benefiting from MDR-TB treatment. In most cases, a female patient is also a wife or mother who provides essential care for other members of her family, including those who also suffer from MDR-TB. Women have the social obligation to care for their sick children and spouses, but they may be denied even the most fundamental needs when they are ill themselves.
It is imperative that immediate action be taken to address the difficulties experienced by female patients as well as their support networks. This can be accomplished by putting emphasis on the requirement for ’patient-centered care’” and enhancing the services offered at local health facilities that are closer to the patients. This would cut indirect related costs associated with treatment that female patients may not be able to afford. This is critical because most women are incapable of maintaining adherence to the treatment regimen, yet worse when it comes to women in rural areas that mainly engage in unpaid care work and have no room to create and focus on income streams.
Along the therapy continuum, we need to emphasise the significance of psychosocial stresses and social support as intermediary predictors for successful treatment results. To be able to ensure that female patients have a supportive environment to sustain adherence, families, patients and their family members should each receive the appropriate health information relevant to the condition and treatment plan in order to establish a support system that is both enabling and supportive. This is critical in sustaining adherence to treatment and care for Tuberculosis.
In addition, in order to improve the overall level of care provided, the screening for and treatment of mental health disorders should be incorporated in the national recommendations for the management of MDR-TB cases.
There is need to develop and implement a comprehensive mechanism for contact tracing of new tuberculosis cases and defaulters, implement an all-inclusive surveillance system such as the community awareness, screening, testing, prevention and treatment to combat TB. As evidenced from the work by the Center for Health, Human Rights and Development (CEHURD) contact tracing in northern Uganda, continuous tracing and reintegration into treatment saves lives not just of those who had dropped out of treatment but also the ones in their communities. A strong Primary Health Care system that is adequately facilitated would go a long way in ensuring efficient prevention and response to MDR-TB especially among women.
The writer is a Senior Programme Officer at the Center for Health, Human Rights and Development (CEHURD).
According to the Uganda cancer institute, in a press statement released on 1st September 2022, an estimated 33,000 Ugandans are diagnosed with Cancer every year. Out of this, only about 7400 make it to hospital for treatment and care.
In Uganda, breast cancer is one of the most common types of cancer. Despite growing efforts to improve awareness, over 75% of breast cancer patients in East Africa present with late-stage disease, with Uganda registering over 80% of women presenting late-stage disease. This is attributable to a dysfunctional and lack of recognition of the early signs and symptoms among primary health care providers, and compounded poor infrastructure, delay in seeking support and an inadequate human capacity
As a person who has lost someone dear, to cancer, the experience caring for a patient right from detection to death is so heart breaking and I always look out for friends and family in this regard. A couple of weeks ago, a friend told me she felt a lump in her breast. I cautioned her not to take it lightly and advised her to have an immediate medical checkup. Two weeks down the road, I call to check if she had done the medical check up and alas, she had not done any test. Her explanation was that, as a Christian, she was giving God a chance to take away the lump and that her and her community of Christians were engaged in 40 days fast as part of the healing process and would only check after the 40 days. Knowing the importance of early detection, in improving the prognosis, I was so disappointed. Don’t get me wrong, I believe in God and miracles. The person I lost trusted God for healing and I know well how it all ended. Knowing how hard it can be to face a test that might be life altering, I chose not to push her too hard. For me, the death of the loved one still haunts me to date, perhaps if we had acted intime and had her tested and cancer detected early, maybe we would have saved her life. Chances of survival from cancer are as high as 90% if a woman is tested regularly and the cancer is detected in the early stages.
Unfortunately, for many women in Uganda, access to cancer screening and testing is constrained. In most private facilities, a mammogram on average costs 150,000/= and this is way beyond the reach of many women. The situation is worsened by limited access to these mammograms. With the current state of affairs and as the old adage says, prevention is better than cure. Emphasis on making healthier lifestyle choices and food choices is a good place to start. Secondly, early detection should be emphasized. We have a saying where I come from, that a stone you can see, might prevent you from stumbling. Likewise, when cancer is caught early, the chances of treating it and healing are higher. Even the cancer treatments are easier to withstand before the body is overwhelmed by cancer cells.
It is evident that the fight against cancer is not just for the medical professionals but all of us. Like the Prime Minister said in her recent visit to Uganda Cancer Institute, “We need to fight cancer like corona virus was fought by involving all stakeholders”. There is need for behavioral change through addressing cultural and religious beliefs that frustrate early detection and treatment of cancer. Early detection and treatment can be enhanced through community empowerment by building the capacity of critical mass community advocates. This can be through strengthening the ability to self-examination for symptoms of cancer. It is important to strengthen the capacity of community health workers as a first point of contact.
A robust cancer awareness has to be created as a preventive measure against cancer. Furthermore, there’s a need for sensitization to the masses on the proper and effective treatment for cancer. I got into a conversation with some colleagues and discovered that many patients had chosen herbal medicine as an alternative treatment because of the high cost of treating cancer and the disproportionate number of patients compared to medical professionals.
It is import for government to invest in the fight against cancer screening and treatment. To leave no one behind in cancer screening and treatment, it is imperative that government takes deliberate action to decentralize these services. The cost to travelling to Kampala for cancer treatment is prohibitive and this partly contributes to the high cancer mortality rates. Investment in breast cancer screening and treatment is an equity issue and must as such be prioritized.
The writer is a lawyer and a Programme Officer at the Center for Health, Human Rights and Development (CEHURD).
Before joining the Center for Health, Human Rights and Development (CEHURD), I had basic information about the right to health. This basic information was gained while pursuing the health and the law course unit in my fourth year at Makerere University Law School. Learning the right to health was exciting and it set a spark within me that I desired to carry forward in my career. This did not materialise immediately after Law School but when I eventually joined CEHURD, I was excited and looked forward to learning more about the right to health and this unique area of legal practice.
At CEHURD, I have learnt, unlearnt and I continue to learn each day about the right to health and the intersectionality of health and human rights. I can confirm that there is a lot of knowledge and exposure that the right to health brings to light. CEHURD, among other things, provides legal support to victims and survivors of sexual violence and health rights violations. It also litigates strategic cases aimed at addressing systemic gaps and bottlenecks within the provision of health services in the country.
CEHURD prepares, nurtures, and gives you a platform to shine and build your career. As a legal practitioner, last year, I had the unique opportunity of litigating a landmark Sexual and Reproductive Health Rights case before a bench of five justices of the Constitutional Court. This is a dream come true for any young lawyer.
My experience in handling and litigating SRHR cases has been an emotional rollercoaster; it has been easy, hard, tasking, draining both physically and emotionally at times but above all, fulfilling. It is exciting to secure a win for a client and a win for the transformation in the provision of health services in the country. Litigating SRHR cases is unique because this is not something you do without learning, unlearning, understanding and preparing. Your mind is trained to creatively pick out the rights issues in the case and articulate them sufficiently in a manner that reflects preparation and in-depth knowledge of the issues at hand. Furthermore, the external lawyers we work with on some of our cases have to be oriented on the unique aspects of the right to health and why it matters before they delve into the gist of the cases. This calls for thorough research, preparation which continuously builds one’s mastery in the area of Health and Sexual and Reproductive health.
When a person calls the CEHURD toll-free line or walks into the office seeking help, that person is either seeking information or is seeking for support. They are usually hurting or have suffered some form of loss and need redress and or some form of support. Regardless of the circumstances and the facts of the case, as lawyers we are expected to be non-judgmental, good listeners and provide the most appropriate professional support. During the client-advocate meeting, when the client breaks down and starts to cry, the counsel must wear another hat of a counsellor and have to exercise empathy towards them. This requires that the lawyer for a moment, abandons the legal path and the knowledge acquired in Law School to concentrate on helping a client recompose through provision of Psychological first aid. This requires that for a moment, you abandon the legal package and knowledge you walked into the meeting with, and take on a new mantle of a counsellor.
We walk the journey with our clients, we counsel them, we exercise empathy, we hand-hold, we manage expectations and above all, we keep an open mind as we handle these cases. It is important to note this process also takes on an emotional toll on the lawyer and calls for selfcare. The emotional toll is largely because lawyers by training are not counsellors but in country with limited professional counsellors, any lawyer will by default provide; counselling to their clients especially when engaged in SRHR.
This type of work is not void of challenges such as the heart-breaking experiences of the clients, and being misunderstood by the public because of the nature of the work done, among others. Sexual and Reproductive Health is a largely contested arena. Listening to clients’ experiences can get emotionally draining because their experiences are in most cases very painful and nobody deserves to go through such grueling experiences. Furthermore, the clients are not conversant with the litigation progress and despite an effort to explain to them and manage expectations, they get burnt out and experience litigation fatigue.
Litigating human rights will certainly be difficult for any client especially if they are facing stigma, discrimination, abuse, and isolation among others because of the delay in the disposal of their cases. To respond to these challenges, CEHURD has invested in the provision of psychosocial support to the legal team that handles these cases, general staff wellness and welfare to enhance the continuity of litigation. We also share and learn amongst ourselves in the Strategic Litigation Programme with the view of bettering ourselves. We also hold annual clients’ meetings where clients are invited for interactions and update meetings about their cases, clients share amongst themselves and learn from each other and we also receive feedback which we find useful for improving our service delivery.
As mentioned, we are sometimes misunderstood by the public but choose top stick to our calling trudge on nonetheless, undeterred and ever so ready to defend and stand for our clients’ rights and for system change. Justice for our clients comes in many forms; arrest of an accused person, sentencing (imprisonment) of an accused person, an apology from the health worker, an explanation offered for what went wrong, an admission of wrongdoing from the health facility or health worker among others. It is these small wins and seeing systemic changes in the provision of Health that is the power below my wings and that keeps me waking up every day to provide legal support.
Despite all the hurdles and challenges encountered, the work is fulfilling. Fulfilment is in the fact that you helped a person and they didn’t pay you for that service; that you utilised your legal knowledge to address a human rights violation and get justice for your client. Fulfilment is the phone call from a grateful client highlighting his or her gratitude “mwebale nyo, tusimye byona bye mwakola” –” thank you very much, we appreciate everything you do for us”. Some clients call us to update us on the progress of their daughters who suffered violence to indicate that our interventions built the girl’s confidence, she returned to school and she passed her Primary Leaving Examinations (PLE).
To all human rights defenders, your work is not in vain; a step-by-step effort, a multi-sectoral approach, and perseverance will go a long way in realising a just society; a society in which people are free from sexual violence, free from health rights violations and all other violations around us. Let us persevere and keep the flame burning because society and the world at large still need us.
“Helping one person might not change the world, but it could change the world for one person” – Anonymous.