The Center for Health, Human Rights and Development (CEHURD) has been implementing its five-year strategic plan (2020 – 2024) since January 2020. Strategic plan implementation is now 2.5 years and due for a mid-term review to assess progress and whether we are on course. CEHURD wishes to engage the services of a consultant with expertise in formulation and evaluation of strategic plans with an advocacy focus and who has a good understanding of issues of health, human rights sexual and reproductive health and rights (SRHR).
Please find below the Details and Terms of Reference;
Sickle cell disease is incurable. However, if detected early, the symptoms can be minimised. The greatest burden of sickle cell disease is in Sub-Saharan Africa, in Uganda, estimates suggest that 15,000 babies are born each year with sickle cell disease. In cases of married couples, majority of the partners do not know of their partners’ genotypes which clearly points to the fact that Sickle cell disease screening before or even after marriage is not prioritized there’s a need for the government intervention and action.
By Pauline Namuli
Sickle cell disease continues to claim lives in Uganda but with effective treatment and care of patients, a number of lives can be saved. People with sickle cell disease suffer from a number of complications, including anaemia, life-threatening bacterial infections, strokes, and general organ failure, and may also endure severe pain also known as pain crises. Symptoms differ from individual to person, the condition has a severe impact on the sicklers ranging from their education, work, and psychosocial development. The disease is a hereditary condition that affects 20 per cent of the Ugandan population. Currently, around 33,000 babies are born annually with the disease of which, 80 per cent before the age of five years. Sickle cell disease is incurable. However, if detected early, the symptoms can be minimised.
Worldwide, Sickle cell disease contributes a significant burden that is not amply addressed. The greatest burden of sickle cell disease is in Sub-Saharan Africa. In Uganda, estimates suggest that 15,000 babies are born each year with sickle cell disease. The world health Organization has indicated the need to improve disease prevention, awareness, and early detection. The Ministry of Health has made significant strides in addressing the sickle cell disease burden by introducing newborn screening programs in selected districts with the highest disease burden. The increased attention is aimed at reducing sickle cell mortality while increasing care and management outcomes. Sickle Cell disease care and management go beyond dealing with the challenge of the disease but also includes dealing with society-related challenges. The people are often stigmatized and discriminated against largely because of myths/beliefs associated with the disease and this often forces families to hide their sick and this is driven. Stigmatization and discrimination are largely a result of ignorance about the disease. While studies have demonstrated that many individuals have heard about Sickle Cell disease this information has not been heard from a health worker. This increases the proportion of spread of nonprofessionally verifiable information which perpetuates stigmatization and discrimination. It is therefore important to have information from professionals on causes, signs and symptoms, and prevention strategies.
Screening services across the country still remain substantially low yet it clearly influences family decisions and subsequently control of the disease in the country. In cases of married couples, majority of the partners do not know of their partners’ genotypes which clearly points to the fact that Sickle cell disease screening before or even after marriage is not prioritized yet it may also influence personal or family decisions. To respond to this, it is imperative to increase access to screening services and information.
Treatment for Sickle cell disease continues to be a huge challenge. It’s important to note that the sickle cell treatment in Uganda is costly and a number of them cannot afford it. According to the Ministry of Health estimates, 80% of sickle cell disease patients die before the age of five as a result of medical complications, while the disease is responsible for around 16% of early infant mortality in the country.
In 2020, during the commemoration of World Sickle Cell Day, the ministry of health launched guidelines on sickle cell treatment to standardize the type of treatment given to patients by health personnel at certain points of care. At the launch, it was also revealed that it was in the final stages of adding the relatively new sickle cell drug hydroxyurea, which is also used in cancer treatment, to the list of essential drugs recommended for sickle cell patients. Currently, families caring for patients say the drug is still too expensive for many caretakers and patients. A 250mg target costs between UGX 1,000 to UGX 2,000 while a 500mg costs up to UGX 3,000 shillings. This requires an annual cost of about UGX 1,100,000, which is way beyond most people’s ability to pay.
Based on the information provided, there’s a need for the government intervention and action such as adding the primary drug for treatment on the essential medicines list as well as decreasing the drug price and making it more affordable for the patients so as to improve the quality of life for sickle cell patients and to reduce on their mortality rate.
The writer is an intern at Center for Health Human Rights and Development.
The Center for Health, Human Rights, and Development (CEHURD) with support from Swedish International Development Cooperation Agency (Sida) wishes to develop a community advocacy dashboard to allow grassroots community structures and partners to identify, document, and report Sexual and Reproductive Health Rights (SRHR) violations. The platform will be a central web-based online system where Community Health Advocates (CHAs) will identify, document, and remotely report any health rights violations in their communities. The 24/7 hour-up time online system will enable CHAs to submit identified SRHR and health rights complaints along with the associated evidence to support CEHURD’s case follow-up and advocacy.
One in every five children aged 13-17 years experience emotional abuse while violence, sexual harassment and drug addiction have recently escalated. The World Health Organisation (WHO) estimates that 100 to 140 million girls and women worldwide presently live with the consequences of Female Genital Mutilation. To further note, in recent months, Uganda has been grappling with harmful practices like child sacrifice, child trafficking, child labour, and early marriages which have tremendously affected the progress of young children in our society.
By Sandra Ndagire
African children, Ugandan children in this case, face a lot of issues that harm them physically, emotionally and psychological ranging from cultural and traditional norms and practices, upbringing, neighbourhood and the legal environment. With the onset of the COVID-19 pandemic, many children and young people especially young girls were exposed to teenage pregnancies and unsafe abortions, early marriages, child labour, to meet individual and family needs, sexual exploitation, violence, abuse and failure to continue with school.
The pandemic resulted in a massive closure and unprecedented loss of jobs and incomes of many families leading many children to enter the workforce to help their families survive, forced to work long hours and or enter more hazardous and exploitative conditions and exposed to sexual engagement both consensual and non-consensual. Additionally, according to the Ministry of Gender, Labour and Social Development survey report of 2018, 44 per cent of girls and 59 per cent of boys aged 13-17 years had experienced physical violence and all forms of abuse. Of this, one in every five children aged 13-17 years experienced emotional abuse. Additionally, the National Violence Against children survey noted that 25 of girls and 11 per cent of boys reported sexual violence.
As Uganda joins the rest of the world to commemorate the Day of the African Child under the theme; Eliminating Harmful Practices Affecting Children: Progress on Policy and Practice since 2013”, it is presented with an opportunity to take stock. This stock includes looking at what has been done in regards to the adoption of policies and practices and reflect on what needs to be done to effectively eliminate harmful practices affecting children in Uganda. The 2013 theme emphasised putting an end to harmful social and cultural practices against children, and highlighted the roles and responsibilities of various stakeholders, particularly children who would be provided with an opportunity to express their views on harmful social and cultural practices. Harmful practices listed on the 2013 Day of the African Child were majorly child marriage and female genital mutilation. However, violence, sexual harassment and drug addiction have recently escalated. Female Genital Mutilation (FGM) is rife in our society and the World Health Organisation (WHO) estimates that 100 to 140 million girls and women worldwide presently live with the consequences of FGM.
In Uganda, the Female Genital Mutilation practice is common among the Pokot and Tepeth in Karamoja sub-region and the Sabiny in Kapchorwa. As per UNICEF and the Uganda Bureau of statistics, it is ranging at 13 per cent in Kapchorwa and 52 per cent (highest) in Moroto. This practice is majorly happening, especially among females aged 15-19 years across the six districts of Kween, Bukwo, Kapchorwa, Moroto, Nakapiripirit and Amudat, according to the 2017 survey report concerning FGM. To further note, in recent months, Uganda has been grappling with harmful practices like child sacrifice, child trafficking, child labour, and early marriages, which have tremendously affected the progress of young children in our society. Uganda was ranked 14th among the 25 countries with the highest rates of early marriages 46 per cent of whom are girls marrying before the age of 18 years. According to the 2016 Uganda Demographic and Health Survey, 34 per cent of women aged 20-24 years were married before the age of 18 years.
We therefore, call upon Government and duty bearers to prioritise children’s rights as given to them, by protecting them against any challenges especially aggravated with the COVID-19 pandemic. This includes sexual exploitation and abuse including inducement, coercion and encouragement to engage in sexual activities and other customary and cultural/ traditional practices that are harmful to their wellbeing, health, education and socio-economic development. More to this, the Government of Uganda needs to establish mandatory reporting responsibilities and protection orders; ensure the recovery and reintegration of child victims and restore their rights; establish a universal child registration system. The Governments should also engage strategic stakeholders including cultural and religious leaders; empower children to support the prevention and abandonment of harmful practices, and consolidate data and research on harmful practices. There is also a need to strengthen international, regional or bilateral cooperation to eliminate and protect children against harmful practices affecting them physically, emotionally, socially and mentally.
There is, therefore, a need to come up with strategies that protect children and young people, and also recognise their ability to make decisions about their future by creating an enabling environment for them to access information and services.
The writer is an intern at Centre for Health, Human Rights and Development (CEHURD) in the Community Empowerment Programme.
A total of 63 Health Centre (HC) IVs conducted cesarean sections without blood transfusion services and 38 HC IVs did not provide any emergency obstetric care services in FY 2019/20 because of the inability to access blood or absence of requisite staff.
By Grace Awilli
It is likely that the National Budget Speech will be read today. Incidentally, today also happens to be World Blood Donor Day. The day was first commemorated in 2005 by a joint initiative of the World Health Organization (WHO) and the International Federation of Red Cross and Red Cross societies to raise awareness of the need for safe blood and blood products as well as thank the donors for their voluntary, life-saving gift of blood. It is one of the eleven global public health campaigns marked by WHO as well as the civil society organisations around the world.
Usually, blood and blood products are essential for the management of injuries, medical illnesses, and childbirth. However, chronic shortages in blood supply in the country perpetuate the high levels of morbidity and mortality from injuries, maternal loss of blood and treatable diseases. Therefore, a safe and adequate blood supply is crucial in ensuring patients in both emergency and non-emergency situations get access to safe blood to save their lives. According to WHO’s global database on blood safety, a country should be able to collect blood equivalent to one per cent of its population and Uganda with an estimated population of about 48 million collects far below the required amount which in turn leads to a wide shortage of blood in the country and thus loss of lives. In 2021, Uganda Red Cross Society mobilised 152,891 units of blood which were still insufficient in relation to the population of the country.
In Uganda, haemorrhage continues to be the leading cause of maternal death, contributing 42 per cent of all deaths reviewed, with postpartum haemorrhage contributing up to 90 per cent of all haemorrhage cases reported. Thirty-six per cent of maternal deaths occurred among young mothers under 24 years who should have been in school, contributing up to 10 percent of all maternal deaths. It should be noted that a total of 63 Health Centre (HC) IVs conducted Cesarean sections without blood transfusion services and 38 HC IVs did not provide any emergency obstetric care services in FY 2019/20 because of the inability to access blood or absence of requisite staff. It is estimated that 8,400 mothers are being unnecessarily referred to regional referral hospitals because the HC IVs lack the capacity to perform obstetric care due to the lack of blood supplies. Installation of blood fridges at HC IVs would allow these patients to receive on-site care and reduce unnecessary referrals, saving time and effort of the specialised medical staff at the regional hospitals, and reducing transportation costs. The Budget Committee of parliament noted that UBTS collects about 300,000 Units of blood annually yet the actual estimated need stands at about 420,000 Units. This leaves a blood deficit of 120,000 Units annually. In order to meet this gap, UBTS needs to expand its capacity to mobilise, collect and screen enough blood requirements.
It should be noted that low-and middle-income countries frequently have insufficient blood supplies necessary to meet the demand and as a result, patients in low and middle-income countries are frequently unable to access blood units necessary for the transfusion in a timely manner. At times, shortages of blood at hospitals in Uganda, especially in rural areas last for several days and according to statistics from various hospitals, so many people die due to these shortages. Much as Uganda has a national blood transfusion service, there has been a noticeable lack of a steady blood supply available for patients at the different health facilities. The reluctance by the community members to donate blood is attributed to a number of factors including superstition, fear of knowing their HIV status and interruptions in the supply of donor kits and testing reagents.
Therefore, the WHO recommends voluntary, non-remunerated blood donation and has set a standard of 10 blood donations/ 1000 population as a baseline value for all countries to meet. While on average, high-income counties have 32.1 donations/1,000 population, low-Income countries have only 4.6 donations/1000 population which is really low to meet the high demand for the blood needed by patients. It is estimated that blood donation by only one per cent of a country’s population is needed to meet the basic demand for blood and to achieve this, there is a lot that should be done by Ugandans in order to meet the blood donation standards by WHO and this can only be done by mobilising and encouraging the public to voluntarily donate blood so as to fill the national blood demand. Uganda also needs to improve existing structures for blood collection and enhance allocation to Uganda Blood Transfusion to cater for blood collection and processing.
It is therefore our hope that today’s budget speech will indicate increased funding for blood collection and management in order to save lives.
The writer is a Lawyer and volunteer in the Campaigns, Partnerships and Networks programme at the Center for Health, Human Rights and Development (CEHURD).
