Because being a warrior isn’t just about the shape of our blood cells, it’s about the passionate, fighting spirit God has bestowed upon us

by jORDAN TUMWESIGYE

As a child I was friends with a boy who was seemingly ill all the time. I have never forgotten his sullen temperament or his sunken dead eyes especially on days he was in pain. I never understood what ailment he suffered mainly because I was a child. My friend suddenly passed on before his ninth birthday and upon my incessant inquiries I was told that he had lost the battle to sickle cell anaemia.

My friend was born in a family of four- three boys and a girl. Two of the boys were sicklers while the rest, as I understood later, were carriers. I learnt later that the remaining sickler had since succumbed to the disease at the ripe age of fifteen. This experience opened me up to the devastating effect of the disease.  

Sickle cells disease is a severe genetic blood disorder which affects people who inherit genes that cause abnormal haemoglobin. In Uganda, Ministry of Health estimates point to the fact that at least 20,000 babies are born with sickle cells disease and about 80% die before they turn five.

19^th June is celebrated worldwide as international sickle cell day in a bid to raise awareness about the disease. This follows a 2008 United Nations General Assembly resolution that recognised sickle cells as one of the world’s foremost genetic diseases.

This year as we mark yet another international sickle cell day, it is crucial that more awareness around the disease is created. The disease represents a public health concern but the lack of consciousness about the same can only further frustrate efforts aimed at preventing the disease. While, there is a lot of fear attached to the alarming mortality rates of the disease, by 2002, the oldest patient known to the sickle cell clinic at Mulago National Referral Hospital was aged seventy-three.

Secondly, it is crucial for government to further accelerate efforts aimed at controlling malaria. Research indicates that falciparum malaria is a leading cause for mortality and morbidity among sickle cells disease patients. While Ministry of Health approved the use of Hydroxyurea for sickle cells patients following a study called Novel Use of Hydroxyurea in an African Region with Malaria (NOHARM), it is important to prioritise malaria control programmes such as calling for sleeping under insecticidal mosquito nets.

Thirdly, blood transfusion is an effective treatment option for some severe complications arising out of sickle cell disease. It is therefore important that government continues to prioritise budgetary allocations to the Uganda Blood Transfusion Services to enable patients who require access to blood transfusion any fighting chance.

 Most importantly, screening for sickle cells disease should be prioritised especially for persons intending to marry just like it is for sexually transmitted diseases like HIV/AIDS. Again, this can only be achieved through massive awareness programmes on the disease. Massive awareness cannot be considered effective unless community participation and involvement in its truest sense is carried out.

On a day like this, it should not be enough to remember people who have passed on from this deadly disease. It should not be enough to recall the devastating effect the disease had on them. It should be that we reflect on ways we can reduce mortality and morbidity associated with the disease.

The writer is a programme officer at the Center for Health, Human Rights and Development (CEHURD).

“When COVID-19 came in, as the older child at home I had to go with my mother to wash clothes and fetch water for people to earn money since school had stopped and there was not enough food and essential commodities at home. At this time I don’t think I can go back to school because I have to look for money to cater for my siblings’ education,” Seventeen-year-old Jane narrates. 

By Edith Sifuna

At the beginning of 2020, World Health Organization (WHO) confirmed COVID-19 a public health emergency of international concern and has since caused widespread fears and strains on different systems worldwide. Different guidelines and directives have been put up by different countries, Uganda inclusive, to curb down its spread and as such have affected many systems, children’s rights and welfare being the most affected.

The pandemic has had a profound impact on Children’s rights, majorly their right to an adequate standard of living, right to protection from child labor and right to education among others. This health crisis has aggravated many of the main social and economic catalysts of children’s rights abuse such as limited access to education, early pregnancies, child marriages and poverty. 

This means, as we celebrate this year’s Day of the African Child under the theme, “30 years after the adoption of the Charter accelerate the implementation of Agenda 2040 for an Africa fit for Children”, as economies are shutting down and stay-at-home orders are becoming the new normal, the Government of Uganda needs to come up with strategies to address the unspoken damages caused by the COVID-19 pandemic to children’s rights.  

The pandemic has disrupted access to reproductive health services and information hence exposing many girls to unwanted pregnancies during the lockdown. Most young people have had sexual encounters either consensual or non-consensual, and due to their inability to access reproductive health services, they have ended up pregnant exposing them to dangers of early marriages and other birth complications such as fistula, unsafe abortions and or death.

It is expected that 13 million more child marriages could take place by 2030 which would have otherwise been managed. Child marriages are not only a violation of girls’ human rights and their rights as children, but are also characterized by sexual gender-based violence from their partners. The pandemic has disrupted all efforts intended to end child marriages and this calls for Government’s intervention to implement and strengthen effective child-friendly national legislative, policy and institutional frameworks addressing such challenges as per Agenda 2040. 

The economic pressure has caused such a huge economic burden for a country like Uganda, most vulnerable communities/ families have resorted to forcing their girls who are pregnant into marriage due to income constraints, perceiving them as financial burdens rather than children with a future to realize and rights to uphold and protect. 

Furthermore, the closure of schools/learning institutions due to COVID-19 pandemic has greatly interjected the education for many children, especially the girl child. Many of them will not be able to return to school as a result of increasing pressure to work and meet individual or family needs, let alone stigma for pregnant girls/ young mothers attending school, while others have lost contact with the education system, especially those from vulnerable communities with no option of distance/ e-learning.

When President Yoweri Museveni ordered schools closed on March 18, 2020, this further contributed to an increase in child labour. The pandemic resulted into a massive closure and unprecedented loss of jobs and loss of income in many families introducing many children to the workforce characterized by hazardous and exploitative conditions for survival. Although the Government of Uganda came up with a strategy to distribute food items, most families did not receive any COVID-19 relief and those who received it, it did not sustain them for long. According to the International Labour Organization, the number of children in child labour decreased by approximately 94 million between 2000 and 2016, representing a drop of 38 per cent. A rise in child labour was therefore an inevitable consequence of the pandemic as children become primary bread winners for their families after losing a care giver or their care giver losing a source of income. 

We therefore call upon Government and duty bearers to prioritize children’s rights by protecting them against any challenges that have come with the COVID-19 pandemic such as sexual exploitation and abuse including inducement, coercion or encouragement to engage in sexual activities and customary/ cultural practices that are harmful to their wellbeing, health, education and socio-economic development. 

Measures to mitigate the effects of the COVID-19 pandemic should be put in place such as increasing chances for pupils to stay in school and access to health related information on reproductive health and rights. Keeping girls out of child/early marriages will boost the country’s/communities economic growth saving them on resources and pressure on the health sector that would otherwise be used to manage the effects of early pregnancies such as maternal and infant mortality. 

It is therefore important that the Government of Uganda implements Agenda 2040 whose main objective is to restore the dignity of the African child and establish long-term strategies that will contribute towards sustaining and protecting children’s rights in Africa. This is strongly emphasized in aspiration 2, 6, 7 and 9 of the Agenda 2040 where; Governments need to put in place effective child-friendly national legislative, policy and institutional frameworks; ensure that every child fully benefits from quality education; that every child is protected against violence, exploitation, neglect and abuse; and that every child is free from the impact of armed conflicts and other disasters or emergency situations respectively.   

Ms Sifuna is a Programme Officer in the Campaigns, Partnerships and Networks programme at CEHURD.

FOR IMMEDIATE RELEASE:
WEDNESDAY, 16 TH JUNE 2021
Kampala – Uganda

Today, the undersigned civil society organisations have convened the press to express concerns over access to Oxygen therapy in the country. Oxygen is an essential life-saving commodity which must be accessed in a timely way when needed. It is essential for people with Covid-19 as well as those with other health conditions, such as pneumonia,
cancer and cardiovascular diseases, among others.

Research indicates that access to Oxygen in Uganda has been problematic in the past. Most hospitals
have some Oxygen supply. However, these hospitals continue to struggle with various challenges such as
dependable delivery and effective use of Oxygen. In addition, there is a lack of knowledge and skills among
health-care providers on some aspects of Oxygen therapy, such as commodity delivery and pulse oximetry.
These gaps have been further exacerbated and exposed by Covid-19. This context has an impact on the
availability, accessibility, acceptability and overall quality of Oxygen in the country.

Through the enactment of the National Scale up of Medical Oxygen Implementation Plan 2018-2022 1 , the
Government of Uganda committed challenges for the availability, access and quality of Oxygen therapy in
the country. The Plan aims to increase the availability and utilization of oxygen in higher level facilities
along four main objectives namely: providing a national strategic framework to guide scale up of oxygen
supply and utilization; securing, maintenance and replacement of oxygen therapy and diagnostic equipment
through the regional workshops and the National Medical Store; providing a framework for training of staff
in health facilities on rational use of oxygen and basic maintenance of equipment as well as providing an
advocacy instrument to secure funding to support oxygen scale up interventions. The Plan was projected to
cost an estimated investment of USD 4.3m in the initial year of 2018 and annual costs of USD 1.5m per
year thereafter. However, previously, an uneven electricity distribution, malfunctioning oxygen cylinders,
limited access to pulse oximetry, inadequate staffing as well as lack of continued professional training have
been cited as the biggest impediments to access to Oxygen.

There are currently no official up to date reports that point to the extent of oxygen access during the Covid-19 pandemic but media reports in 2020 painted a very worrying picture in terms of the quality of oxygen
patients received and the lack of availability and accessibility for the same. This year the story has not been
any different.

Oxygen is being rationed and health care workers have to make the difficult choice of who can be prioritized for oxygen therapy or not. It is reported that 14% of Covid patients will need oxygen in hospital
and 5% mechanical ventilation in intensive care. On June 9th 2021, the Daily Monitor reported that 10
patients had succumbed to COVID-19 at Soroti Hospital over lack of oxygen. Moreover, there is also the
issue of health workers being arrested over allegations of theft of oxygen cylinders in some hospitals.

As civil society, we are concerned about the many challenges associated with access to Oxygen for
patients with Covid-19 and other conditions in the country, which undoubtedly have an impact on the right
to health. The situation is indeed worrying especially following the second wave of COVI-19. Public
hospitals especially in the capital of Kampala and major cities and towns have run out of Oxygen supply.
Some individuals and families have been able to meet the very high costs of Oxygen therapy in private
hospitals. Other families have resorted to meeting high costs of monitoring Oxygen levels of their patients
and administering Oxygen therapy at home. These options have come with financial exploitation of patients
and families by private suppliers/providers of Oxygen and related tools and equipment, which are focusing
on profit margins. This has driven patients and their families into catastrophic health expenditures.

Some of these families were able to access Oxygen therapy in public hospitals outside Kampala before the
inter-district travel ban, even though this comes with a risk of Covid-19 spread. But the vast majority of
Ugandans cannot afford to pay for access to Oxygen in private health facilities, as well as getting the
Oxygen therapy from home, yet trotting from one public facility to another in search for Oxygen therapy.
This constitutes inequities and social injustices that infringe on the right to health and ultimately draw the
country further away from the realisation of Universal Health Coverage (UHC).

Civil society is further concerned about access to information on Oxygen therapy. Whereas access to
information on health care is crucial for the realization of the right to health, there a lack of systematic and
consistent provision of information specifically about Covid-19 vaccination and now about centres where
Ugandans can access Oxygen therapy.

The Oxygen shortage exists amid health workers being stretched, failure to observe the Ministry of Health
recommended standard operating procedures including within health facilities, scarcity of beds, and lack of
the right information to guide the general public on COVID-19 management, especially on vaccination and
Oxygen access. Lack of information has made the public resort to using local remedies such as use of
herbs without regulation, posing health risks. Civil Society recognizes Government’s current efforts to
expand the local production of Oxygen and recommends that these issues be addressed along with these
efforts.

As Civil Society, we remind Government of its obligations and call for action as hereunder:

1. Improved access to Oxygen therapy by harmonising the coordination framework at the national
   level to scale up Oxygen availability, supply and use.
2. Protect patients and families by regulating costs of Oxygen therapy, related tools and equipment.
3. Consider a supplementary budget for addressing the current Oxygen availability and access crisis
   in the country.
4. Provide systematic and clear communication on the availability and access to Oxygen therapy,
   including the referral pathways.
5. Strengthen community participation on issues of Oxygen access and use, including the adaptation
   of community approaches such as safe Oxygen use at home to decongest health facilities, reduce
   the overwhelming work load on health care workers and prevent health care setting related
   infections.

Undersigned Civil Society Organisations

Action Group for Health Human Rights & HIV/ AIDS – AGHA

African Institute for Investigative Journalism – AIIJ

Action for Rural Women’s Empowerment – ARUWE

Center for Health, Human Rights and Development – CEHURD

Coalition for Health Promotion and Social and Development – HEPS Uganda

Reach A Hand Uganda – RAHU

Uganda National Health Consumers’ Organisation – UNHCO

For more information contact: info@cehurd.org and copy in tumwesigye@cehurd.org or call 0788-
882809.

1 Ministry of Health. National Scale up of Medical Oxygen Implementation Plan 2018 – 2022.
https://www.health.go.ug/cause/national-scale-up-of-medical-oxygen-implementation-plan-2018-2022/

Dr Kiggundu was a knowledgeable repository for the history and context of reproductive rights in Uganda and he shared his rich daily clinical experiences on the challenges relating to maternal health that women, young and old, face.

It is understandable that all our attention has been turned towards the raging pandemic but 16 women bringing new life into this world today may not see another sunrise because there was no blood to save their lives. Only five pints of blood could save them all. We can all do something to save them!

The World Blood Donor Day – Ms Anne Lumbasi

Today CEHURD joins the world to give a resounding applause to the voluntary unpaid blood donors who answer the call of humanity and save lives that would otherwise perish. This year’s theme for the World Blood Donor Day is “Give Blood and Keep the World Beating” Did you know that one pint of blood that you donate can save 3 lives! In the words of Anne Frank “No one has ever become poor by giving”. We appreciate the thousands of men and women who willingly give this essential life-saving commodity that keeps the world pulsating even amidst this pandemic.

Like many things, the pandemic has impacted on the daily blood collections especially with the closure of schools which are major platforms for blood donation drives. We should not forget that despite the pandemic, life goes on! Women and girls are still giving birth and in need of blood, cancer patients and children with anemia heavily rely on blood and its commodities, not to mention hospitals are still receiving accident victims in need of this life saving commodity. 

Blood shortage in health facilities is believed to be one of the major factors contributing to high death rates among women and young girls giving birth. According to the Annual Health Sector Performance Report (AHSPR) 2017/2018, hemorrhage was the leading cause of maternal deaths accounting at 48.5% almost half of the deaths reported. Anemia was also ranked 3^rd among the leading causes of death while injuries from road accidents was ranked the 6^th which all require availability of blood.   

Throughout this pandemic, hospitals have struggled with a critical shortage of blood which is affecting services and putting the lives of many Ugandans at risk every day. It is understandable that all our attention has been turned towards the raving pandemic but 16 women bringing new life into this world today may not see another sunrise because there was no blood to save their lives. Only five pints of blood could save them all. We can all do something to save them!

The Uganda Blood Transfusion Services (UBTS) is faced with numerous challenges that make it extremely difficult to meet the national blood collection target which is equivalent to 1% of Uganda’s population per annum as recommended by the World Health Organization. In fact, challenges such as limited funding and lack of human resources were aggravated by the pandemic but UBTS had to innovate to ensure the daily collection continues and that lives are not needlessly lost. They brought blood donation drives closer to the people within communities, called on previous donors and partnered with Organisations to have staff donate blood.

A day like this is meant to raise awareness about the existing need for blood and to appreciate all blood donors for that precious priceless life-saving gift. This life saving commodity cannot be manufactured so CEHURD together with the world is clapping for you and you. A pint of blood can go so far! May we all continue to keep the world beating by giving!You can book an appointment to give blood by calling The Uganda Blood Transfusion Services on their toll free line O800 122 422.

The writer is a Senior program officer at the Center for Health, Human Rights and Development (CEHURD).