”This time I waited for the results with a little bit of excitement because I was sure they would be in my favour. But alas! they still came back positive. At this point I wondered what I was not doing right.”

By Mariana Kayaga

Before I got the COVID test (yes, that irritating nasal swab), I was really fine but as soon as our Human Resources Manager asked me to get a COVID test, fear overtook me, not because I was afraid of testing positive but because I had had a bad experience the last time I tested.  

As soon as the test was finalised, my fears unfolded, I got a running nose and a very painful headache (the kind that hurts just above your eye).

On my way back from buying a handkerchief a friend called, saying she wasn’t fine and that she needed someone to talk to. When I left office I went straight to her place in Kisaasi and spent the night with her as we talked. 

That Saturday morning at around 12pm,  I received a call from the Human Resources Manager 

HR: Hello Mariana, how are you? 

Me : I’m fine, how are you? 

HR : Munange the test came back positive.

Me : Thank you. Have a great weekend. 

HR : If you need any help don’t hesitate to call me. 

At that moment my friend and l were still in bed and I told her my result. Her response wasn’t what I expected because of the stigma that comes with having a positive Covid results. She instead requested me to stay at her place,saying she would look after me. 

I later called my mum, broke the news and told  her where I would be spending the rest of my week. I also called my Manager to inform him about the results and that I wouldn’t be able to go to the office. I can only imagine how he felt given the fact that my seat is next to his.

This COVID thing hits different. After being home for more than three weeks, treating an illness that almost got me stuck to a wheelchair, my anxiety was off the roof. 

The first seven days were the pits with chest pain, a constant headache, terrible flu and a burning sensation in my throat…Ugh! I did some steaming with plain water in a bucket at least twice a day and that went along with some concoctions which included lemon, ginger, garlic and raw pepper. I still wonder why I was adding pepper to the mix because it only fuelled the burning sensation and made my nose run even more.

On top of the random fevers, running nose and headaches, I lost my sense of taste and smell. For some time, I felt like a non-living thing! I could see food but I could not taste or smell it and the top tier was that I was always hungry. 

In my mind I knew things had gone bad and that was the worst feeling I have ever had. I later returned to my place and was by myself with no one to talk to apart from following / engaging in online conversations. It felt really terrible and sometimes I would find myself crying hysterically. The thought of my lungs failing me on one random morning and ending up on a life support machine made my stomach hurt, given the gaps in Uganda’s health care system. I was extremely worried with thoughts of ‘’what if I don’t make it?’’, ‘’what if I get to hospital and it’s crowded without a bed for me?’’ as tears rolled down my cheeks.

Meanwhile, I took COVID tests hoping for negative results, looking forward to days free from the steaming which had even bruised my fingers.

The results still came back positive. Whenever the HR Manager gave me the results, I could hear the worry in her voice.To allay her worries, I always told her I would be fine. During the call she advised that I go get a second opinion and later buy more vitamins (vitamin D3, E, C) and Zinc to boost my immunity.

I went for another test at Norvik Hospital and of course paid  Shs 200,000 but again the result came back positive. To say that I felt terrible when the doctor broke the news is an understatement. 

While I was struggling with all the other symptoms that came with COVID, Azithromycin gave me an extremely painful stomach ache and the only consolation I had was that it was a three days’ dose, so I hung in there. 

After seven days of taking vitamins, I regained my taste buds but couldn’t smell a thing. I went for another test. At this moment, I was desperate for a negative result! This time I waited for the results with a little bit of excitement because I was sure they would be in my favour.  But alas! they still came back positive. At this point I wondered what I was not doing right.

In all this, my father never got tired of calling and checking no my progress. When my mother called and I told her the same results, she decided to send me fruits everyday, saying “Kilabika wetaga bibala” (it seems you need fruits). She sent the fruits till I got a negative result, seven days later. 

The truth is COVID treats everyone differently, some people don’t even notice that they have it (asymptotic), others battle it silently like I did and others get unto life support but we can all get through this. 

My prayer is that we all follow the Ministry of Health guidelines and stay safe. Let us not wait for the people we know to drop dead before we take COVID seriously. If you get it, stay positive and believe you can beat it no matter how frustrating it feels in the moment. 

Ms Kayaga is a Programme Officer in the Community Empowerment Programme. 

PRESS STATEMENT

FOR IMMEDIATE RELEASE

Friday, June 25th, 2021

Regulate the rates hospitals are charging for management and treatment of COVID-19

KAMPALA. Center for Health, Human Rights and Development (CEHURD) and Mr. Mulumba, Moses, a concerned public spirited litigant ,have filed a case against the Government of Uganda, the Minister of Health and the Medical and Dental Practitioners Council for failure to regulate the exorbitant fees for the management and treatment of COVID-19 patients in health facilities.

In this case filed in the High Court, we call upon the Honourable Court to weigh in and compel the respondents (the Minister of Health and the Medical and Dental Practitioners Council   and Attorney General)to intervene and regulate chargeable rates for management and treatment of COVID-19 patients, to save the lives of Ugandans who are undoubtedly continuing to lose lives at the quest for profits by the private actors.

Over the past months, there have been several reports of families and individuals struggling to cover the costs related to treatment and management of COVID-19. The rates charged by the hospitals are clearly exorbitant in nature and largely unbearable to vulnerable Ugandans seeking the COVID 19 treatment in hospitals amidst the pandemic and tough economic times.

We are mindful that the government is  the primary provider for health as a social good. In cases when the government cannot make this provision, then it bares the obligation to regulate the private providers. Since Uganda recorded its first case of COVID-19, the government through the Minister of Health has issued several Statutory Instruments to regulate the national response to the pandemic. We are however surprised that no instrument has been issued to regulate theprivate sector as it supports the national response to COVID-19. This to us, is a huge omission which the government through the Minister of Health must urgently address.

‘It is just unconceivable that the government would fail to ensure a functional public health system and also negate its primary duty of regulating costs charged by the private sector providing health services amidst a pandemic. The government cannot regulate everything else on COVID-19 except treatment costs. We except the Minister of Health to use her powers in the law to protect Ugandans from the unreasonable costs charged by the private sector in the COVID-19 treatment and management. It is just unacceptable that some actors can have this crisis as a profiteering moment’ Mulumba, Moses one of the applicants in the case, and also CEHURD’s Executive Director.

A recent survey of media reports reveals that a day in the Intensive Care Unit (ICU) at a private hospital in Kampala will cost a COVID-19 patient between Shs2 million to Shs10 million per day depending on the facility. A patient with moderate symptoms is likely to pay between Shs1.5 million and Shs5 million daily, depending on where they go. Considering that treatment can go on for weeks, the final bill comes down to an amount too exorbitant to bear.

As the effects of COVID-19 continue to ravage the country, more people are going to require treatment and management of the virus .Since there is no regulatory framework to rein in private hospitals these high changes will continue

 The applicants in the case therefore ask Court to compel ;The Attorney General, the Medical and Dental Practitioners Council, and Minister of Health Hon. Dr Jane Ruth Aceng Ocero intervene and regulate medical fees chargeable by hospitals in the treatment and management of persons suffering from COVID-19, as is their statutory obligation.

For more information, contact Nakibuuka Noor Musisi 0782 496681 or email nakibuuka@cehurd.org and copy info@cehurd.org

The bills to say the least are obscenely high. After the spike in Covid-19 cases, there have been numerous stories of patients paying through the nose with some having to pledge some form of security including land titles to obtain specialised treatment.

By Mukasa Sirajeh Katantazi

In August 2019, a picture of a patient with oxygen masks and a nasal cannula being wheeled into an Equity Bank branch in Kampala to withdraw money for his hospital bills went viral. This picture evoked a public outcry and anger about the lack of integrity in our health care systems and the ruthlessness of private hospitals to get paid with claims albeit unsubstantiated, purporting that a certain private hospital where the patient was receiving treatment had wheeled him to the bank to access funds prior to medical treatment.

After the spike in Covid-19 cases, there have been numerous stories of patients paying through the nose with some having to pledge some form of security including land titles to obtain specialised treatment. This has caused families to take out loans or to sell family and personal assets to raise money to meet the hospital bills. Others have had to organise mini fundraising drives on social media platforms to raise money to pay off the bill.

The bills to say the least are obscenely high and one such bill from a private facility in suburban Kampala was upwards of UGX 120 million for 10 days in ICU. Unfortunately, the patient died and when the family posted this on social media platforms to raise cash to offset the bill, the hospital administration came out to rebut the “exaggerated” cost claiming that the true bill was only “UGX 70 million” after public outcry that private hospitals were taking advantage of the pandemic to make a killing.

In a country where the per capita income is roughly UGX2.7 million, it means that the cost of treating a critically-ill Covid-19 patient is beyond the affordability of most households. UGX 70 million over a 10-day period means on average UGX 7 million daily is needed.

There is a need for the Ministry of Health to regulate these prices to protect the public from unethical business practices.  Although the 1995 Constitution doesn’t have a specific provision for the right to health,our courts have unequivocally pronounced themselves on the justiciability of the right to health as a social and economic right.

The Center for Health, Human Rights, and Development, (CEHURD) yesterday petitioned court to compel the Government of Uganda through the Ministry of Health and the Medical and Dental practitioners council to reign in healthprenuers and regulate the prices charged for the management and treatment of Covid-19 patients. Human rights go beyond political rights and it’s about time social and economic rights are given the same attention as political rights.

Despite absence of an express provision in the 1995 Constitution on the right to health, the same is implied from other constitutional clauses. For example the National objectives and directive principles of state policies, the articles on the right to life, human dignity and women rights among others.

The absence of an express Constitutional provision is not unique to Uganda but also in many other countries’ constitutions. It has therefore always fallen on  courts to infer  the right to health as a fundamental right.

In the  indian case of Bandhua Mukti Morcha v. Union of India & Ors. (1997) 10 SCC 549 the Supreme Court inferred the right to health from Article 21 of the Indian Constitution which guarantees the right to life.

Similarly in the state of Punjab and Ors. v. Mohinder Singh Chawala CIVIL APPEAL NOS.16980-81 OF 1996 , court reaffirmed that the right to health is fundamental to the right to life and should be put on record that the Government has a constitutional obligation to provide health services to the people.

In our context credit goes to CEHURD for their endless efforts to hold the Ugandan Government accountable for the health needs of its citizens.

Recommendations

1. The right to health should be declared a fundamental right in the Constitution. That means the bill of rights needs to be amended.

2. As legal practitioners, enforcement and protection of these rights is only attained in Courts of law. We should use not this opportunity not only as a tool to solve a single fact pattern but as a tool with a potential to rethink our priorities, cause opinion shifts and improve the health conditions of our people.

You will agree with me that a few lawyers interest themselves in such areas of practice but now with Covid-19, all commercial and land transactions cannot be practiced instead when we become sick and get hospitalised in a fake facility with exorbitant bills which one cannot challenge whilst in there. This should be a wakeup call to all of us to rethink and redirect our practice.

Mr Katantazi is a lawyer with Senkumba & Company Advocates.

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).

Annually, 16th June is celebrated as the Day of the African Child worldwide. Uganda is party to the Convention on the Rights of the Child, and ratifi ed the African Charter on the Rights and Welfare of the Child on 17th August 1994. This year, the African Committee of Experts on the Rights and Welfare of the Child, established under Articles 32 and 33 of the African Charter on the Rights and Welfare of the Child selected the theme for the commemoration of the Day of the African Child as “30 years after the adoption of the Charter: Accelerate the Implementation of Agenda 2040 for an Africa fi t for Children”.

Article 14 of the African Charter on the Rights and Welfare of the Child recognises that every child has the right to enjoy the best attainable state of physical, mental and spiritual health. This obligates the state to ensure appropriate health care for expectant and nursing mothers and to develop preventive health care and family life education and provision of service. Access to healthcare services is therefore fundamental to the full realisation of the right to health for children. Unfortunately for most children, accessing healthcare services is dependent on obtaining parental or guardian consent.

Adolescents in Uganda face many challenges related to sexual and reproductive health and rights. Adolescents start having sexual intercourse too early, leading to early and unintended pregnancies, early and forced marriages, unsafe abortions, sexually transmitted infections (STIs) and HIV, ill health, dropping out of school, disability and even death. Adolescents therefore need information on STIs, family planning counselling and services, contraceptives, HIV prevention and care services; maternal health services for adolescent mothers, post-abortion care, psychosocial support, and other services in order to smoothly transition to adulthood.

The Uganda Bureau of Statistics released the 2019/2020 National Household Survey Report which indicates that out of a population of over 41 million people, 54 per cent of Uganda’s population is below the age of 18. Of these, 28 per cent are subjected to child labour and 21 per cent live in child-headed homes. Also 15 per cent of adolescent girls between the ages of 15-19 are married by the age of 15, while one out of every four girls is pregnant or has a child. Equally, 66 per cent of all new HIV infections are contracted by adolescent girls yet only 13.1 per cent use a modern method of contraception. These statistics show that the African child in Uganda is not enjoying the best attainable state of physical, mental and spiritual health.

Early sexual debut and teenage pregnancies often mean complicated births and unsafe abortions are often all too common among adolescent girls, requiring emergency obstetric care and post abortion care. But many teenage mothers do not have access to adequate reproductive health care and die while trying to give life. Uganda has one of the world’s highest maternal mortality rates, with 16 mothers dying every day in pregnancy or during and after childbirth. The traditional practice of child marriage and female genital mutilation also persists in many communities, for example in 2013, Uganda ranked 16th out of 25 countries with the highest rate of child marriages.

The consent question

The international and regional legal frameworks do not directly address the question of consent to medical treatment for children, but recognize the rights, responsibilities and duties of parents and guardians to protect their children, and to provide for them, including ensuring access to health care. They majorly require states parties to respect the views of the child in making decisions that aff ect them, and recognise the concept of evolving capacities and that age should be considered alongside maturity, implying that a higher age does not necessarily imply that an individual has matured.

The age of majority, that is the threshold of adulthood, is generally recognised in national and international law to be 18 years. From the reading of the law, the capacity to consent to medical treatment is a preserve of adults. For a minor to receive medical treatment there is a requirement to have the consent of a parent or guardian regardless of whether the child is a mature minor or an emancipated minor and yet adolescents begin to demand for sexual and reproductive health services much earlier. The national policy framework though is a lot more progressive than the law, when it comes to consenting to sexual and reproductive health information and services.

Inconsistencies in the law

It should be noted, however, that individual laws have inconsistencies on capacity to consent for adolescents within themselves, with other laws as well as with policies. To illustrate this, the Constitution, the Children’s Act, the Penal Code and the Convention on the Rights of the Child recognise 18 as the age of majority. However, the Penal Code diff erentiates defi lement into simple defi lement for children aged 16-17 years, from aggravated defi lement for sex with children aged less than 16 years, thus recognising evolving capacities of minors. The Customary Marriage (Registrations) Act recognise that a child aged 16 can marry (and presumably have sexual intercourse), while the Marriage Act sets the minimum age for marriage at 21.

On its part, the Evidence Act stipulates that anyone above tender years – that is 14 and above – can testify in court. The Children’s (Amendment) Act prescribes that a child can be gainfully employed at 16; can consent to adoption at 14; and have criminal liability at 12. The HIV Prevention and Control Act prescribes 12 years as the minimum age for consent to HIV testing and counselling. The National Guidelines for Research Involving Humans as Research Participants set the minimum age for assent at eight to participate in research, emphasising that such assent or dissent, while it has to be accompanied by consent from a parent or guardian, takes precedence.

The National Policy Guidelines and Service Standards for Sexual and Reproductive Health and Rights – SRHR (2006) emphatically states that no parental consent is needed for a client to access family planning. This is a total deviation from the provisions of the law that sets different ages for different responsibilities. In addition, the policy guidelines and service standards recommend combined oral pills for adolescents who are sexually active and clarifies that oral pills have no age limitation. On its part, the adolescent health policy targets to increase contraceptive uptake among adolescents who are sexually active.

The practice in the judiciary of assessing the capacity of young witnesses for capacity to witness (voire-dire) is a practical illustration that children have the capacity to give views and make sensible decisions. This fact has also been confirmed by SRHR service providers that participated in this study. The findings suggest that age appropriateness is not widely understood or applied in the provision of sexual and reproductive health services information and services to adolescents. The more practical guide has been demonstrated to be service need, defined as sexual activity.

It is also important to note that the law, policy and practice have legitimised the self-determination of mature and emancipated minors in consenting to medical treatment, and by extension, including for fellow minors, at least in the case where minors are parents. As already noted the law allows minors to get married provided they obtain parental consent which brings about a requirement for spousal involvement or consent before a woman can acquire reproductive services.

The ambiguity and restrictions surrounding the requirement of consent have acted as an obstacle to access to health care services for minors, especially for sexual and reproductive health services because most minors start having sex without telling their parents or guardians and by default seek sexual and reproductive health services without consulting their parents or guardians because they consider it to be shameful. Mandating them to provide parental or guardian consent will keep them away from seeking much needed health services.

On this Day of the African Child we therefore call upon necessary stakeholders to harmonise the laws and policies on informed consent for healthcare services to adolescents to improve access while providing guidance on administration of informed consent to young people of diff erent ages and for diff erent healthcare services. There is also a need to develop criteria to guide service providers in assessing capacity to consent, considering all relevant parameters beyond the age of the client. Should this be done Uganda will be well on the way to realising Article 14 of the African Charter on the Rights and Welfare of the Child.

A version of this article was first published in the New Vision on Wednesday 16th June 2021 page 22.