The need to operationalize the fistula strategy for Uganda

By Joan Kabayambi MakSPH/CDC follow- CEHURD

Fiona Bakantweka, was 16years when she was expelled from school for becoming pregnant. When time for giving birth reached, she was taken to a birth attendant in the village.Unfortunate Fiona’s labor lasted almost four days that when she finally pushed the baby out, it was dead. This however damaged the reproductive system that she “leaked” and smelled of urine and faeces all day, every day.

Fiona had developed obstetric fistula. Fistula is a preventable and treatable condition which occurs when a girl or woman has an obstructed labor and does not get a Caesarean section in time. The obstruction may occur because the mother’s pelvis is too small, the baby is badly positioned, or its head too big.The protracted labor threatens the life of both baby and mother. If the mother lives, the pressure by the baby against the woman’s pelvis damaged the soft tissues around her bladder, vagina, and rectum and caused holes, or fistulas, to develop. If the fistula is between her vagina and bladder (vesico-vaginal), she has urine leakage, and if it is between her vagina and rectum (recto-vaginal), she is unable to control her bowel movements.

Fistula in Uganda mostly affects young and poor women with little education and limited access to quality health care, including emergency obstetric care. According to the 2003 Baseline Assessment of Obstetric Fistula in Uganda done by WHO, patients lack the knowledge that the condition can be repaired and are too ashamed of their condition to seek help. Those who remain untreated may be shunned by their communities and relatives and must find new ways to support themselves.

“I live in shame,” says Bakantweka. “I am now out of school, and even my family blames me for the pregnancy. They say I am paying for my sins.”
It is risky to have babies in Uganda due to the fact that the maternal mortality ration is 438 per 100,000 live births Uganda Demographic and Health Survey (UDHS) 2011. With little access to health care and information about these kinds of risks, young people begin sexual activity and childbearing at an early age.

The WHO estimates that obstetric fistula affects 50,000 to 100,000 women every year, mainly in sub-Saharan Africa. In Uganda, the survey (Uganda Demographic and Health Survey 2011) shows that 2 percent of women have experienced obstetric fistula, making it 1,900 new cases each year.

Obstetric Fistula is a shameful and stigmatizing condition that very few women declare that they have the problem hence making it difficult to know the number of women with the condition.

In Uganda, the Ministry of Health has developed the National Obstetric Fistula Strategy 2010/2011-2014/2015 that has made Mulago and other government hospitals to start offering free treatment by surgery. There are also 25 fistula trained surgeons in Uganda and in all the referral Hospitals there is a surgeon or two.

However, there is need for raising awareness in communities on prevention and mobilize communities to look out for women with the condition to access treatment from the agonizing obstetric fistula. This can be done by Civil Society Organizations like the Center for Health Human Rights and Development (CEHURD) under Community empowerment programmes.

This can be made easier if the government collaborates with all the relevant stakeholders, such as the existing local initiatives and communities and, ensure that health facilities have the equipment and supplies specialized for fistula surgery, the surgeons are well remunerated, the environment they work in is conducive, and that they are motivated to work even in the not-easy- to- reach areas.

From Montreal to Kampala: Understanding the Justiciability of

By Lipi (Nakimuli Zam) Mishra

Mishra (right) and other members during a community intervention in Kiboga and Kyankwanzi Districts in Central Uganda
Mishra (right) and other members during a community intervention in Kiboga and Kyankwanzi Districts in Central Uganda

Every year, the McGill University Faculty of Law Centre for Human Rights and Legal Pluralism sends a select group of students to locations around the world to conduct legal work on human rights and development as part of a 12 week internship. Students work on various topics ranging from women’s rights to piracy to aboriginal law (among others). This is the first year in which an intern from McGill was placed at CEHURD’s office in Kampala, Uganda.

I joined the CEHURD team as part of the McGill Human Rights Internship Program in May and the experience has been transformative. During the first portion of my internship, I worked closely with Primah Kwagala, the program Manager for the Human Rights Documentation and Advocacy Program.

I arrived at a particularly exciting time and worked closely on the TRIPS (Trade Related Aspects of Intellectual Property Rights) advocacy work. This particular project led me to meetings at Parliament, proposing the passing of a resolution by the East African Legislative Assembly, and presenting the civil society position to the TRIPS Council representatives at the Ugandan Ministry of Trade.

As I became more familiar with the work and city, I quickly learned that there is never a dull day at the CEHURD office. Mid-way through my internship, I also began to working with the Community Empowerment Initiative where I visited tobacco farms in Kiboga and consulted with community members.

During our consultations and interviews, we quickly learned about the complex connection between Tuberculosis (TB), Human Immunodeficiency Virus (HIV) and tobacco. Tobacco smoking, a modifiable risk factor, is associated with poorer outcomes in HIV-associated opportunistic infections, of which TB is the commonest in developing countries, including Uganda. These connections are rendered even more complex once the involvement of business incentives vis-à-vis farming practices are introduced into the equation.

The trip to Kiboga was enlightening on many levels. Even the car ride to the district with CEHURD’s Executive Director, Mr. Moses Mulumba, proved to be an enriching opportunity to experience life outside of the hustle and bustle of Kampala.

Mere kilometers outside of the city centre, I felt transported to a different way of life; hoards of children walked barefoot to school, farmers lived communally on tobacco farms to sustain operations, and HIV clinics were grappling to figure out effective strategies to deal with TB co-infection. Now, I will be using what I’ve learned to draft grant proposals so that CEHURD can continue to conduct research and advocacy in the area of tobacco control, particularly among vulnerable populations like the ones we met in Kigoba.

Overall, my term at CEHURD has been unparalleled. I’ve learned a great deal, discovered a passion for health and intellectual property law issues, and made some great friends. The CEHURD staffs have been overwhelmingly welcoming and have grown to be great mentors for me. I would like to extend my deepest gratitude to everyone at CEHURD for a wonderful summer and for providing me with the knowledge, experiences, and tools to move forward and continue to advocate for the right to health.

While I arrived in Kampala as a timid second year law student in May, I will be leaving as an advocate with a passion for advancing for the justiciability of the right to health. Wabale nyo, CEHURD!

Load shedding public health facilities; a silent killer

By Nakibuuka Noor

power-cut9[1]“At around 11Am, I was in the theatre, for epidural anesthesia. The gynecologist was performing the surgical procedure. Soon as the baby was removed from my womb electricity went off. I heard the doctor saying that my life was in danger. He quickly sent one of his assistants to order for the generator to be switched on immediately.

This indeed saved my life” Evelyn Namukasa, a mother of two.
Electricity is not only increasingly becoming essential in our day today live but also in public health facilities. Constant power supply in public health facilities is an added advantage to saving lives of mothers and children because most of the equipment in electronic

Consequently, interrupting electricity supply particularly through unexpected load-shedding, poses a direct risk to the lives of patients who may be in intensive care, receiving emergency treatment, or undergoing life-saving surgery.

In Developing Countries like Uganda, where functional alternative power sources are limited, unplanned load-shedding in public health facilities is a bigger threat to livelihoods.

Despite all that however, indiscriminate load shedding of health facilities still happens in a number of health facilities and this has denied the citizens of their right to access health care in public
health facilities and in some cases either directly or indirectly led to the death of patients.

A new strategy has however been developed to hold the government accountable for such indiscriminate load shedding and violation of rights. CEHURD lodged a complaint with the Uganda Human rights Commission (UHRC) against UMEME Ltd and the Electricity Regulatory Authority (ERA) for specific declarations on violations of rights when public health facilities continue experiencing load shedding.

The efforts to have this dream come true have however not been realized. In a letter to CEHURD dated 14th March 2013, UHRC recognized that “… the complaint discloses a human rights violation of the right to Health and there can be no legal right without a remedy ..”. However the letter went ahead to dismiss the complaint stating that “.. if the Commission was to take on the complaint it will be overwhelmed”.

The laws establishing and regulating the operations of Uganda Human Rights Commission such as the 1995 Ugandan Constitution, the Uganda Human rights Commission Act cap 24  and the Uganda Human rights complaints procedures of 2008 do not exclude handling of complaints that raise Human rights violations on grounds that the Commission will be overwhelmed and unless the commission comes out to publically pronounce its self on the problem, many more rights will be violated and the progressive realization of the right to health will be a myth.

CEHURD will continue to pursue this complaint and ensure that the Commission holds UMEME and ERA accountable.

Uganda Through the Lens of MDGs on Health

By Juliana Nantaba

Participants during the MDG community consultation in Gulu District Northern Uganda
Participants during the MDG community consultation in Gulu District Northern Uganda

As the Millennium Development Goals (MDGs) target date of 2015 approaches, it is essential to take stock of Uganda’s progress.  Even though in the past years, Uganda’s infant mortality rate and maternal mortality have declined, an inexcusable amount of children and pregnant women still die every year from preventable causes. Health is a human right and a matter of social justice. Better and more equitable health outcomes increase productivity and resilience, reduce poverty and promote social stability.

The 2013 Report Of The Commission On The Post 2015 Development Agenda: Towards An African Common Position And Modalities For Establishment Of A Committee Of Heads Of State And Government On The Post 2015 Development Agenda reveals that some of the factors contributing to inadequate achievement of the child health MDGs include weak health systems (physical and financial barriers to essential health services, shortage of medicine, poor human resources) and poor conditions as determinants of health (household education, income, insufficient and inappropriate nutritional practices, poor sanitation facilities).

The causes of maternal mortality and morbidity are well known and mainly result from the inability of a health system to deal effectively with complications, especially during or shortly after childbirth. The availability of skilled health providers is critical in ensuring high-quality antenatal, delivery, emergency obstetric and post-natal services.

Health as a right is an important driver and key indicator of what sustainable development seeks to achieve.  One of the reasons why the MDGs have been widely affirmed as a good tool for development is that they were globally agreed; however, there is need to ensure that they are locally relevant and mutually owned.

The post-MDG framework must promote and facilitate genuine and representative country ownership that gives attention to accountability including downward accountability to beneficiaries.

In light of the above, CEHURD is currently undertaking a GO4HEALTH project  to identify, engage and involve stakeholders in the formulation of global health goals to follow-on the United Nations Millennium Development Goals (MDGs) beyond 2015.

The purpose of the project is to inform European Commission on how new goal to right to health should be and advise on how new ideas should be set through community consultations. The project is being done across the globe including Africa, Asia and South America. The African region has selected three countries i.e. Zimbabwe, south Africa and Uganda. Each of these countries has unique characteristics and will provide unique insights for the consultations.

With the end of the current MDGs less than 1000 days away, there is still much work to be done to achieve the health goals. The feedback from various CSOs consultations on health priorities for post 2015 state that the Post-2015 framework presents a massive opportunity to improve global health and should build on and improve the current health MDGs.

Each child should be able to live up to their full potential, intellectually and physically. Each young adult should be taught and empowered to live a healthy lifestyle, including reproductive and sexual health. And, through demographic and ageing transitions, each adult should be able to age gracefully with minimal morbidity and maximum functionality.

Effect of Intellectual Property Rights on access to medicines

By Prima Kwagala

Media, CSOs and Community members during a Press Conference at CEHURD
Media, CSOs and Community members during a Press Conference at CEHURD offices in Kamwokya

A visit to a drug shop will shock you if you ask for a certain drug and the pharmacist in turn asks, “do you want the cheap duplicates from India or the original from Switzerland.”   Question remains, who sets the price of medicines in Uganda? Why are there different kinds of medicines to cure one illness?

According to the medicines index in Uganda (National Drug Authority), 80% of medicines in Uganda are imported from countries like India, China, Germany and Switzerland with only 20% produced by local industries for the local population

Who should we hold accountable for drug prices? Why should a particular drug have two or several prices? The answer is simple. When someone or an industry invests in research of a particular disease and discovers a drug to cure it, a government gives them monopoly rights (Patents) to market the drug. These rights are meant to last 20 years according to international trade rules. This gives the product owner mandate to determine the price of the drug so as to recover the expenses they incurred in researching on the drug.

These rights are under what is termed as ‘intellectual property rights’. If not regulated, these rights are selfishly abused by the owners through setting very high prices at the expense of the poor populations who fail to raise funds for such essential medicines.

International trade rules have however been put in place by the World Trade Organization (WTO) to ensure that poor nations can benefit from the innovations of rich countries which have the resources to invest in research and development of drugs. An example of these rules came in 1994 as the World Trade Organization’s Trade Related Aspects of Intellectual Property (TRIPS) Agreement.’

This agreement was interpreted by a council of ministers meeting at DOHA in November 2001 [Doha Declaration (2001)] to the effect that the TRIPS Agreement ‘can and should be interpreted
and implemented in a manner supportive of WTO members’ right to protect public health and, in particular, to promote access to medicines for all.

As a result of this agreement and subsequent declaration at Doha, countries party to the World trade Organisation have put in place laws and policies to ensure access to medicines for all. This is because the agreement allowed developing countries to manipulate or make use of intellectual property rights of drug companies to build their capacity to produce drugs for their populations until 2004.

These flexibilities in the WTO -TRIPS Agreement have been beneficial because in 2000, the price of a first line drug of HIV/AIDS cost $12000 (at least UGX 30,000,000) per person per year. Due to our poor situation, people in Uganda considered HIV/AIDS a death sentence.

When the International trade rules came into place as interpreted by the council of ministers at DOHA in 2001, India put in place industries to reverse engineer these drugs and produced them at a much cheaper price. Today the price of first line drugs for HIV/AIDS is less than $67 (UGX. 167,500) per person per year!

The beauty of making proper use of the flexibility to copy versions of ‘brand name’ or ‘originator’ drugs to make ‘generic’ versions of the very same kinds of medicines is what is causing the differences in pricing of medicines. The ‘brand name’ or ‘originator’ drug is expensive because it is inclusive of research costs and the ‘generic’ or copy version from India is not fake but does not include research costs of the first innovator! Thus the difference in pricing

The government of Uganda needs to understand the dynamics of drug pricing by utilising all the flexibilities and to put in place a legal and policy frame work that promotes access to medicines. This is because progressive realization of the right to health entails that governments not only put in place structures for service provision, but also ensure that there is affordable, reliable and accessible services for the populace.

It is everyone’s right to claim access to medicines in Uganda.