When Sylvia Nalubowa went into labour in Uganda’s Mityana district in August 2009, she was taken to a local health centre where she expected to have a normal birth, supervised by a midwife.

After she had delivered her first baby the midwife realised there was a twin on the way. The midwife recommended that Nalubowa be taken to the district hospital where a doctor could handle the second delivery.

But when she arrived at the Mityana District Hospital in Central Uganda, the nurses asked for her maternity kit. This is commonly known as a “mama kit” and contains a plastic sheet, razor blades, cotton wool or gauze pad, soap, gloves, cord ties, and a child health card. All mothers delivering babies in Ugandan hospitals and clinics are expected to bring their own “mama kits” when they go into labour.

But Nalubowa had used her “mama kit” at the first health facility when delivering her first child. The nurses would hear none of her excuses and demanded money to purchase the kit before they could attend to her.

Nalubowa and her baby died.

Jennifer Anguko died under similar circumstances. She arrived at the Arua hospital in North Western Uganda at 8.30am on December 10, 2010 but was not attended to for 12 hours by which time her condition and cries for help were out of control.

One hour later she was taken to theatre but she and her baby died during the procedure. The cause of her death listed in the post mortem report was a ruptured uterus.

The women’s cases are two of many

Sixteen women die in Uganda every day during child birth in instances that could be avoided. In 2011, the World Health Organisation reported that Uganda registers up to 440 deaths for every 100 000 live births.

This is unlike Rwanda where maternal mortality decreased by 77% between 2000 and 2013 and currently stands at 320 deaths for every 100 000 live births.

Most maternal deaths in Uganda are due to severe bleeding, infection, hypertensive disorders and obstructed labour. Others are due to causes such as malaria, diabetes, hepatitis and anaemia. All these are aggravated by pregnancy.

The Ugandan government is committed to providing all citizens with free health services. But it is common to go to a government health facility and find that medicines are not in stock and health workers are not paid. Patients also say that they are often met by health staff who are unenthusiastic about attending to patients expecting free services.

In 2013, the doctor to patient ratio in Uganda was estimated at one doctor for just under 25 000 patients. The nurse to patient ratio sat at one nurse for 11 000 patients.

The country’s public health system has a tiered structure with two national referral hospitals, 11 semi-autonomous regional referral hospitals, and a well established district health system with healthcare centres in 56 districts.

Health care services are financed through general tax revenue and donor funding. Although user fees for health services in public facilities were abolished in 2001 patients are still expected to make direct out-of-pocket payments for some services and drugs.

Fighting for a right

In 2011 lawyers at the Centre for health, Human Rights and Development, a non-profit, research and advocacy organisation, began gathering evidence to hold the Ugandan government to account for Nalubowa and Anguko’s deaths.

The case is now before the country’s Constitutional Court.

In what has turned into a landmark case, the centre has argued that failing to provide essential maternal health commodities in government health facilities is an infringement on women’s rights. The rights to life as well as health are guaranteed under the country’s constitution as well as international human rights instruments the government has signed up to. These include the:

• International Covenant on Economic Social and Cultural Rights (ICESCR),
• Convention of Elimination of All forms of Discrimination Against Women (CEDAW), and
• Maputo protocol.

The court erred

At the first hearing before the Constitutional Court government lawyers objected to the case. They argued that the judiciary was not competent to hear a case that required the executive arm of government to allocate resources to the health sector.

The court agreed and dismissed the case.

But the centre appealed to the Supreme Court, the highest court of appeal in Uganda. It argued that the justices of the Constitutional Court erred in denying them an opportunity to hear the case based on its merits.

In October 2015 the Supreme Court’s seven judges agreed. They made a unanimous ruling that the Constitutional Court judges had erred in dismissing the case. In their judgment they argued that the case had key questions that needed constitutional interpretation for the people of Uganda.

They contended that there is nothing the executive or legislature can decide on that may not be subjected to judicial review – especially if it is done in line with the constitution. And they have ordered the Constitutional Court to hear the case which is now before the Constitutional Court pending a hearing by a new panel of judges.

Making health care a priority

The case has contributed to jurisprudence to help people realise their social economic rights in Uganda.

But it has also catalysed improvements in health service provision. Since the case was initially heard government funding for the health sector has improved from US$ 215 million (UGX 737.60 billion) to US$ 328 million (UGX 1127.48 billion) and more health workers have been recruited. Mothers, however, are still expected to bring their own “mama kits” when going into labour.

There has also been a reduction in maternal deaths. These have fallen from 440 deaths for every 100 000 live births in 2010 to 343 by 2015.

Most importantly, civil society organisations are now, more than ever, alert to demanding women’s health care rights.

 

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The United Nations Joint Program on HIV and AIDS (UNAIDS) earmarked March 1st as the day to mark zero discrimination. The day, which has been celebrated since 2014, is this week being celebrated under the theme “Stand Out!” It recognizes the fact that, there are inequalities catalyzed by laws and policies that are making it difficult for some persons living with HIV and AIDS (PLHIV) to access care and encourages everyone to stand for fair and just societies thereby undermining these key populations’ rights to health and to be free from discrimination.

 
The national projections based on Uganda’s HIV and AIDS Country progress report of 2014, indicate that there is an increasing number of people living with HIV that is; from 1.4million in 2011 to 1.6milllion in 2013, and 1.5million in 2014, with over 1million orphans due to AIDS.

 
Research today indicates that stigma and discrimination is one of the forces that cause escalation of HIV and AIDS. In the Uganda AIDS Survey of 2011 for instance, it was stated that 21.6 % of men and 16.8 % of women felt People Living with HIV (PLHIV) should be ashamed of themselves, while 22 % of men and 18.3 % of women agreed that those with HIV, should be blamed for introducing the disease into the community.

 
The fear of stigma and discrimination affects the uptake of HIV services. Multiple studies in Sub-Saharan Africa provide evidence that many people who have experienced stigma and discrimination as a result of receiving HIV positive results shy away from accessing the services that would have enabled them to manage the virus and its opportunistic infections.

 
It should be noted that laws and policies play a significant part in either promoting stigma or reducing it. In 2014 parliament passed the HIV and AIDS management and Control Act. This Act, even though good and for all intents and purposes to promote care and treatment of PLHIVA, undermines the confidentiality of patients living with HIV and AIDS in certain aspects. In cases where the rights of PLHIVA were promoted, no regulations have to this date been passed to operationalize the positive aspects.

 
Civil society groups have been very keen in advocating for an anti-Stigma policy, however government needs to increase support towards this process to ensure that counseling and civic education on rights of PLHIVA are provided for, in a systemic manner.

 
Further, key to the issue of fighting stigma and discrimination is the aspect of financing of HIV drugs and programs. Parliament has noted that for the past four consecutive years, in spite of the increase in HIV and AIDS infections, there has been no increment in government funds towards purchase of ARVs at the National Medical Stores (NMS). In FY2015/16 the parliamentary committee on health reported that the NMS budget for Antiretroviral therapies (ARVs) remained stagnated at 100 billion for the projected year 2016/17. This is in spite of the fluctuations in dollar currency rates, which led NMS to incur losses of up to 17billion shillings. There is a need for government to increase funding for ARVs this financial year.

 
We thus call on government to;
1. Increase finances for ARVs in FY 2016/17 from the allotted 100bn to at least 150bn
2. Fast track the process of putting in place an Anti-stigma policy
3. Fast track the passing regulations for implementation of positive aspects of the HIV Prevention and Management ACT
4. Prioritize the process of putting in place an AIDS Trust Fund

 
This statement is supported by the Advocacy for Better Health in Uganda.

The capacity of Ugandans to demand for their health rights is still limited due to inadequate awareness resulting from limited availability of the requisite information which translates into poor health indices. Starting January 2016, CEHURD in collaboration with PATH under the Access to Better Health (ABH) project embarked on a series of activities aimed at creating awareness among Ugandans in regards to their right to health. These rights are stated in a document that is known as the Patients’ Charter.

 

The Patients Charter is a result of joint effort by Ministry of Health in partnership with Civil Society Organizations led by the Uganda National Health Consumers Organization (UNHCO). The objective of this charter is to empower health consumers to demand high quality health care, to promote the rights of patients and to improve the quality of life of all Ugandans and finally eradicate poverty nationwide. This charter provides a basis for a legal and regulatory framework in health that contributes to improved capacity for quality health care.

 

CEHURD embarked on a series of radio and television talk shows discussing various articles under this charter. Some of these included the patients’ right to redress, the right to access to information, the right to a healthy and safe environment and the right to consent, among others. These patients’ rights were discussed on a number of stations like Radio One, Radio Simba, Radio Suubi, Akaboozi Radio, NTV, Bukedde TV, and CBS Radio among others; on both English and Luganda programs.

 

During these shows,we realized that majority of  Ugandans were not aware of this document called the Patients Charter that defines the rights and responsibilities of patients in Uganda,they were not aware that health service delivery is more than physical treament and that it also relates to other determinants of the right to health. Furthermore,citizens are not aware that they have a right to lodge a complaint of any health rights violation to the Uganda Human Rights Commission, Uganda Medical and Dental Practitioners Coucil or the courts of law for a redress.

 

On the bright side, we managed to reach a large audience across the country and helped in educating and sensitizing them in their rights as patients. These shows will go on for the next couple of months during which CEHURD will continue in its mission to advance health rights for vulnerable communites and the Ugandan society at large.

 

On the 10th day of October 2010, Ms. Anguko Jennifer, a former district councilor lost her life at Arua Regional Referral Hospital. The late Anguko died during labour after a 16 hour wait at the hospital without medical attention from the hospital. This resulted into the rapture of her uterus and subsequent death of both the mother and her unborn child.
In its efforts to contribute to the reduction of maternal mortality in Uganda, the Center for Health, Human Rights and Development (CEHURD), together with the husband of the deceased, Mr. Inziku Valente filed a petition in the Constitutional Court seeking declarations that; the death of expectant mothers resulting from non-provision of maternal health care packages is violation of the right to life and the failure of doctors, midwives, nurses and government to take the required essential care during ante-natal, delivery and post natal is a violation of right to health, among others. The medical report on the death of Jennifer Anguko indicated that some of the possible causes of her death included inadequate staffing, lack of basic Essential Maternal Health Commodities and poor communication and coordination within the hospital.
Jennifer’s death is just one of the many avoidable deaths occurring in Uganda. Different efforts were taken to ensure the deceased’s passing is accounted for, and the Ministry of Health intervened by demanding that the Uganda Medical and Dental Practitioner’s Council (UMDPC) accounts on the matter, which followed an inquiry into the matter on 7th May 2012 at Arua Regional Referral Hospital.
Following this, on the 29th of January 2016, the Uganda Medical and Dental Practitioner’s Council gave its stand regarding the death of Ms. Anguko Jennifer. The UMDPC found that there was indeed a delay in intervention at the hospital among others and that this led to the death of the patient and therefore issued a stern caution to the hospital director and also asserted that the issues concerning the nurses and midwives had been brought to the attention of the nurses’ council for further action.
This decision reflects all the efforts made by all parties concerned and goes a long way in the fight for justice for victims of health rights violations