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.

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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.

The small grants initiative aims at supporting innovative projects among the membership of the Coalition to Stop Maternal Mortality due to Unsafe Abortion (CSMMUA) working at community level. These small grants will strengthen capacities and enhance the work of these organisations. This initiative is supported by the Wellspring Philanthropic Fund (WPF) and administered by CEHURD.

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Does it make business sense, if your product killed 8 million people especially when it is addictive?

Tobacco use has remained a significant public health challenge in Uganda and a leading cause of non-communicable diseases including heart diseases and premature deaths. Tobacco is also the only legally available consumer product that kills people when it is used entirely as intended.

Even when the law is in place, tobacco is still used in various forms including smoked and smokeless tobacco. The government needs to strengthen existing schemes to make tobacco producers more responsible for the environmental and economic costs of dealing with tobacco waste products.

~ By Esther Dhafa | Lawyer | Programme Officer – Strategic Litigation programme.

Background:
The tobacco epidemic is one of the biggest public health threats the world has ever faced, killing more than 8 million people a year, including around 1.2 million deaths from exposure to second-hand smoke (Global Burden of Disease database) Washington DC: Institute of Health Metrics 2009 IHME accessed 17th July 2021.) Tobacco is also the only legally available consumer product that kills people when it is used entirely as intended. It is the single greatest preventable cause of death in the world today, killing up to half of the people who use it.

Tobacco seriously threatens sustainable development in the world’s poorest nations through its impact on human health, high economic costs, and environmental damage due to massive land clearing and extensive felling of trees. In Uganda, tobacco-growing areas are among the poorest regions in the country. Scientific evidence has proved that tobacco farmers suffer from green leaf disease caused by the penetration of tobacco compounds into the skin of farmers while handling the tobacco leaves.

Tobacco use has remained a significant public health challenge in Uganda and a leading cause of non-communicable diseases including heart diseases and premature deaths. Tobacco use is regulated by the Tobacco Control Act, 2015. Section 16 of the law prohibits the sale of tobacco products in specific public places and within 50 meters of those places, bans electronic cigarettes, waterpipe tobacco delivery systems, smokeless tobacco, and flavored tobacco products, prohibits the sale of single cigarette sticks and bans prominent display of tobacco products at the point of sale. Section 17 of the law prohibits the sale of tobacco products to and by persons below 21 years. Even when the law is in place, tobacco is still used in various forms including smoked and smokeless tobacco.

Commemoration of the World No Tobacco Day (WNTD) 2022:
The World Health Organization (WHO) member states created the World No Tobacco Day (WNTD) to draw global attention to the tobacco epidemic and the preventable death and disease it causes. In 1987, the World Health Assembly (WHA) passed Resolution WHA40.38, calling for 7 April 1988 to be “a world no-smoking day.” In 1988, Resolution WHA42.19 was passed, calling for the celebration of World No Tobacco Day, every year on 31 May.

The Center for Health Human Rights and Development (CEHURD) joins Uganda and the world to celebrate World No Tobacco Day and to mark 35 years since its inception in 1987. We are committed to informing the public about the dangers of using tobacco, the business practices of tobacco companies, what the World Health Organization (WHO) is doing to fight the tobacco epidemic, and what people around the world can do to claim their right to health and healthy living and to protect future generations.
Given that this 2022 year’s theme is “Tobacco: Threat to our environment”, we need to be more environmentally conscious as a country, choose more sustainable products, and step up our legislation including implementing and strengthening existing schemes to make tobacco producers more responsible for the environmental and economic costs of dealing with tobacco waste products.

The fact that the cost of tobacco use in Uganda exceeds the benefits, justifies government intervention to control and combat tobacco use in the country and protect youth from industry manipulation. We call upon the Government to further prevent the future generation from tobacco and nicotine use and enforce Uganda’s Tobacco Control Act 2015’s stringent measures that need enforcement.

Call to action:
“Does it make business sense, if your product killed 8 million people especially when it is addictive??? Wouldn’t you be targeting a new generation each year to face the consequences of using the harmful product???”
As advocates for tobacco control in Uganda, we implore the government this World No Tobacco Day in its non-delegable duty- that cannot be outsourced to a third party to:
• Continue to support the implementation of the Tobacco Control Act 2015, the Tobacco Control Regulations, and the WHO Framework Convention on Tobacco Control (FCTC).

•Support activities that promote healthy lifestyle choices and encourage the public to avoid the use of tobacco and related products.
• Educating members of the public themselves to support the Tobacco Control cause through complying with the tobacco control and public health measures in place.
• Create within the National budget a vote to finance the implementation of nationwide tobacco control programming.
• Establish a Tobacco Control Fund that sources funds from development partners and taxes from the Tobacco industry.