The need for Political and Parliamentary Leadership in Fight Against HIV/AIDS

1. The need for Political and Parliamentary Leadership in Fight Against HIV/AIDS (Case Study – Uganda) A Paper Presented to the Study Group on the Role of Parliamentarians in Combating HIV/AIDS, New Delhi, India 1st – 4th February 2005

2. By Hon. Hyuha. S. Dorothy, MP and Chairperson Committee on Social Services, Parliament of the Republic of Uganda & Co-Chair HIV/AIDS Committee, Parliamentary Network on the World Bank (PNoWB) Email: dhyuha@parliament.go.ug

3. BACKGROUND • According to UNAIDS/WHO report by December 2004, globally no less than 42 million people are living with HIV/AIDS. • Africa South of the Sahara remains by far the worst affected region in the world. According to the UNAIDS report, 3.5 million new infections occurred in 2001, bringing to 28.5 million the total number of people living with HIV/AIDS in the region. • In contrast to the developed world, where up to 30% of all infected people receive antiretroviral therapy, fewer than 30,000 people (0.1%) of the 28.5 million infected Africans were estimated to have received antiretroviral therapy. Of the 14 million children orphaned by AIDS worldwide, 11 million live in sub-Saharan Africa.

4. In Uganda, an estimated of 1.1 million are infected with HIV/AIDS, and one million Ugandans have perished due to AIDS since the first case was reported in 1982. Although national HIV prevalence has dropped from 30 percent in 1988 to the current level of about 6.2 percent; close to 90 000 new HIV/AIDS infections continue to occur each year, and the burden of disease is still very high.

5. Uganda’s Experience • Despite the seemingly gloomy picture, HIV/AIDS can be brought under control, as Uganda’s modest efforts in the fight against the scourge has shown. In Uganda, between 100,000 – 150,000 have AIDS and need ARVs. Approximately 900,000 people have died of HIV/AIDS and related causes; 2.1 million children have been orphaned • Uganda has now significantly brought down the rates of infection. The rates of HIV infection among Ante Natal Care attendees (ANC) have declined from an average of about 30% ten years ago, to about 6.2% among all adult population, where we have stagnated today. HIV infection among the general population has dropped to 5%.

6. LESSONS THAT CAN BE LEARNT FROM UGANDA’S EXPERIENCE IN THE FIGHT AGAINST HIV/AIDS The Multi-Sectoral Approach: • In 1992, the Uganda Government on realising that HIV/AIDS was not only a health issue but a cross cutting issue, with the support of development partners, embarked on a multi-sectoral and holistic approach to HIV/AIDS.This need for co-ordination arose after realising that the functions of the sectors and sub-sectors in the multi-sectoral HIV/AIDS programme are inter-related and geared towards achieving common goals and objectives.

7. The multi-sectoral approach required : • Clearly defined policies and guidelines – which are coordinated by an institution known as the Uganda AIDS Commission (UAC). UAC does the documentation, advocacy, resource mobilisation and joint planning with stakeholders • Note:UAC is not an implementer but rather a coordinator. • A legal framework which involved Parliament, • Well-developed action plans, • National Strategic Framework for AIDS activities – implemented by all partners involved in the multi-sectoral approach.

8. The approach involved: • Community mobilisation involving central and local governments, political leaders at all levels, Non-Governmental Organisations, (NGOs) Community Based Organisations (CBOs), faith based organisations (FBOs), the private sector and the international community. • Various activities of prevention, which include intensive education campaigns, pop songs, billboards, drama groups, condom distribution, voluntary HIV counselling, testing, and support services

9. Technical committees both at central and local government that co-ordinate efforts in research and development, prevention and control, care and support, traditional practices, etc. • Ensured that HIV/AIDS is attacked through a web of co-ordinated efforts starting from the UAC's national secretariat through ministries and districts down to village councils. With the benefit of a concerted national effort, by the end of 1998 infection rates dropped 30 percent to the current prevalence rate of 6.2 percent in urban areas and 4.5 percent in rural areas. The government has led from the front and the benefits of a national government committed to addressing the HIV/AIDS epidemic through all available channels are evident.

10. Openness approach • The Uganda government became open on the problem of HIV/AIDS, regardless of what effect this could have had on the country’s Tourism Industry. HIV/AIDS was made one of government's top priorities and was given a multifaceted approach. • This meant that it formed a constant component in all government programmes. As a result of the open policy, development partners came in to support the cause. • People living with HIV/AIDS (PLWAs) developed a positive attitude and coping mechanism. This minimised the stigma and encouraged international support.

11. International support included: • MAP programme by the World Bank, from 2001-2005 amounting to a total of US$ 50 million. • STIP 1995-2000, amounting to US$ 75 million. • Global Fund – First round US$ 36 million for HIV/AID, Malaria and T.B. • Global Fund – Third round US$ 50 million for orphans and ARVs. Plus US$ 70.4 million for ARV programme. • Other development partners like WHO, UNAIDS,UNDP, UNICEF, Universities and other research institutions, and many others have greatly assisted Uganda. On behalf of the political leaders in Uganda, we greatly appreciate this support.

12. Decentralised implementation approach • Implementation of HIV/AIDS programmes was decentralised from the centre to the lower local governments, civil society organisations and communities. • Resources were decentralised from the central government to lower local governments, civil society organisations and communities for implementation of prevention and care activities of HIV/AIDS. • We built capacity to strengthen national, lower local governments, civil society and communities.

13. THE ROLE OF POLITICAL AND PARLIAMENTARY LEADERSHIP IN THE FIGHT AGAINST HIV/AIDS • In Uganda, different levels of political leadership responded in time to effectively respond to the challenge. The key players that have successfully led the fight against HIV/AIDS include the following: • The Political Head of State of Uganda - H.E President Yoweri K. Museveni. The President’s Office led by the President took overall leadership in the fight against HIV/AIDS. Currently the Uganda AIDS Commission is placed in the President’s office for multi-sectoral coordination.

14. THE PARLIAMENT OF UGANDA • Establishment Parliamentary Committees • By the rules of procedure of the Uganda Parliament, relevant Committees to handle activities related to HIV/AIDS were established. These included: • The Parliamentary Standing Committee on HIV/AIDS • The Parliamentary Committee on Social Services The Parliamentary Standing Committee on HIV/AIDS • The main task of the HIV/AIDS Standing Committee is to enhance capacity of all the Members of Parliament to effectively discharge their advocacy, monitoring, supervision and legislative functions in all aspects of the intensified national response to HIV/AIDS. The other task is to co-ordinate Parliament and Uganda AIDS Commission.

15. Advocacy: the HIV/AIDS Standing Committee has enhanced capacity of the Members of Parliament and other political leaders in the fight against HIV/AIDS to effectively discharge their advocacy function through the following: • The Committee has developed an HIV/AIDS Communication Tool Kit for Members of Parliament on HIV/AIDS, which provides information on HIV/AIDS for of Members of parliament and other political leaders.

16. Annually, the Committee mobilises parliamentarians and other political leaders at various levels , high-profile personalities,for various conferences and workshops to advocate for increased awareness and support for HIV/AIDS prevention and care. • Annually, the Committee compiles a report on HIV/AIDS activities and programmes, which is debated by Parliament. This encourages the Executive to respond to questions and account to Parliament on HIV/AIDS activities and programmes. • The Committee organises International meetings of Parliamentarians and Specialists on HIV/AIDS particularly for the Africa region to share experiences and strengthen their advocacy strategies.

17. Monitoring and Supervision • The Parliamentary Committees on HIV/AIDS, and Social Services visit the countryside to monitor and supervise the delivery of services on activities concerning HIV/AIDS to ensure equity and government compliance. • The Members of Parliament visit and interact with HIV/AIDS affected and infected people in order to provide social and psychological support to them; taking every opportunity to involve them in development and implementation of HIV/AIDS related programmes and policies.

18. The Parliamentary Committee on Social Services • The Social Services Committee by the Rules of Procedure of Parliament is mandated to monitor t and supervise the three ministries of Education and Sports, Health, and Gender - Labour and Social Development. The Committee mobilises resources, and legislates on Laws and Policy matters related to HIV/AIDS

19. Resource Mobilisation Under resource mobilisation, one of the major functions of the Committee is to critically examine the recurrent and capital budgets for HIV/AIDS activities in the ministries of Health, Education and Sports, and Gender - Labour and Social Development and make appropriate recommendations for general debate and approval in the Plenary of Parliament. This is to ensure equitable resource allocation on HIV/AIDS programmes and activities within the national budget expenditure. • Loans: the Committee supports government to obtain loans and grants for HIV/AIDS programmes and activities. • Individual Members of Parliament make financial contributions to HIV/AIDS activities in their respective constituencies. They donate from their allowances to the infected and affected persons and support occasions such as the World AIDS Day.

20. Legislation • The Parliamentary Committee on Social Services, among other functions, examines and recommends on appropriate action on policy matters affecting HIV/AIDS under the three ministries of Health, Education and Sports, and Gender – Labour and Social Development for general debate and approval in the Plenary of Parliament every financial year. Some of the key policies which have been examined and recommended by the Committee on Social Services and approved by Parliament include the following:

21. Presidential Initiative on Aids Strategy for Communication to the Youth (PIASCY) – implemented byMinistry of Education and Sport – Under this policy, the Ministry of Education has developed teachers’ guide for primary schools which emphasises the curriculum on HIV/AIDS. • The teachers address issues on HIV/AIDS during school assemblies, at least twice a month. Similarly, HIV/AIDS clubs have been established in various schools. This policy was financially supported by USAID. • This Financial year, the Ministry of Education and Sports has embarked on developing a similar policy for post-primary institutions.

22. Under the Ministry of Health – The Parliamentary Committee on Social Services has examined and recommended the following policies: • Voluntary Counselling and Testing (VCT) – where the Ministry has made provision for setting up over 200 VCTs in various parts of the country. It has promoted early detection of health status and behavioural change for the individual. The policy is being revised to involve HIV/AIDS routine testing • Prevention of Mother to Child Transmission (PMCT). this policy is for the pregnant mother to be provided with free Nevurapine to protect the unborn baby from infection, or AZT to the infected mother and father in the family to prolong their life. The fertility rate in Uganda, is 6.9 and the pregnancy rate of infected mothers is at 1.3 million people every year, this would make 25-27% death rate, had there been no intervention. However with the provision of Nevurapine or AZT, this has reduced the problem by 50%. This programme now runs in all the country’s 56 districts and is being implemented in over 240 sites. The acceptance rate (to tests) is over 80%. Nevurapine acceptance rate is over 60%.

23. Anti Retroviral (ARV) drugs • Since 1992, Parliament has advocated for the reduction of the cost of ARV drugs from when it was US$ 1000 and the testing was US$200 to the following: • The poor access ARV drugs free of charge • To some employees, ARV drugs are subsidised by their employers • Some VIPs pay for themselves, but governmentsubsidises for their laboratory diagnostic tests. • Currently the accumulated figure of only 35,000 out of the 150,000 people infected with AIDS access ARV drugs. • Government has accredited 100 centres to provide ARVs countrywide. • The challenge is that is that the cost of ARV drugs is still high and many HIV/AIDS patients cannot access it.

24. Research Centres • Parliament supports Ministry of Healthto establish strong epidemiological surveillance of HIV/AIDS, malaria and other virus. • There are several research centres established in Uganda including: • Uganda Virus Research Institute (UVR), which is currently participating in the International AIDS vaccine initiative (IAVI) vaccine trial phase. • Uganda National Health Research Organisation (UNHRO), • The Uganda Natural Chemotherapeutic Research laboratory – which is involved in traditional and complementary medicine. • The Joint Clinical Research Centre. This is involved in various researchers on HIV/AIDS

25. Orphans/Vulnerability Children Policy (OVC). This policy has been approved under the Ministry of Labour, Gender and Social Development. Under the Global Fund third round, the (OVC) will be supportedby US$50 million for implementation of various activities in care and prevention of HIV/AIDS.

26. Law making • Uganda AIDS Commission (UAC);Parliament in Uganda has undertaken many enabling legislative actions in the fight against HIV/AIDS. A particularly important development was the enactment by statute in 1992 of the Uganda AIDS Commission (UAC) to oversee and coordinate the multi-sectoral efforts. It is the UAC that that coordinates HIV/AIDS all government ministries and districts, local and international organisations, Faith Based Organizations (FBOs,) Community Based Organisations (CBOs) and most bilateral agencies and United Nations (UN).

27. The Children Statute of 1996 • One of the most tragic impacts of HIV/AIDS in Africa has been on children. Parliament of Uganda enacted a law that provides for the protection, care and development of all children in an environment that protects their rights as citizens of the country.

28. Family and Children Courts have been gazetted in most districts and are presided over by Magistrates; all Child related cases in the family are handle by children’s court. • Children have a right to ownership and inheritance of family resources and assets including land. • Laws governing rape, defilement and other sexual abuse and offences have also been reviewed. • The age of consent has remained at 18 years of age, women activists in parliament rejected to reduce the age of consent to 16 years

29. CHALLENGES IN CONTINUED FIGHT AGAINST HIV/AIDS Despite the contribution of political and legislative leaders, there are still many challenges and a lot still needs to be done. • Maintenance: The most important challenge is to maintain the declining trends of HIV infection so that in a few years we can have a nearly HIV free Uganda. This requires intensifying the prevention efforts including supporting the development of the National AIDS Policy and reviewing the national strategic plan on HIV/AIDS for 2001/05.

30. HIV Vaccine: Support the development of an HIV vaccine and appropriate women barrier methods (micro-bicides), but in the meantime establishing known effective programmes aiming at preventing further spread of HIV such as prevention of mother-to-child HIV transmission and voluntary counselling and testing. • Anti-Retroviral (ARV) drugs: Over 1.1 million Ugandans were living with HIV/AIDS at the end of 2001. The presence of these People having AIDS (PHAs) has its adverse health and economic impact. Although the number of new infections continues to go down, the number of AIDS cases has continued to rise at a time when many cannot afford the cost of ARV treatment.

31. Human resource: There is also a challenge of building capacity in the area of human resources in handling care. Currently the morale of health workers is still low. There is need to build capacity and better pay and retain them. • Orphans: Since the epidemic began, nearly one million of Ugandans have perished due to AIDS. They have left behind an estimated 2.1 million orphans. One in every four families has an orphan to take care of. The increasing number of orphans, due to AIDS, has major socio-economic consequences of unimaginable proportions.

32. Stigma: Although HIV/AIDS has had tremendous negative impact on family and community structures, these days we are having children who are heads of households and these face all kinds of abuse. They are tortured psychologically; some orphans often face stigma, discrimination and many other problems at schools. Workers and widows are equally stigmatised at the work place and by family members. • Gaps in legislation: There are still some gaps within existing legislation, particularly with regard to employment, family, domestic violence, stigma and discrimination of People with HIV/AIDS (PHA). Others relate to HIV/AIDS in the work place, succession/inheritance of property; and criminal laws such as those that can punish malicious spread of HIV.

33. Enforcement of legislation, poses another challenge not only in terms of knowledge of rights and access to legal recourse, but also with regard to capacity to enforce it. The above challenges are rooted in Policy, Legislation, and Social mobilisation.

34. CONCLUSION AND WAY FORWARD • Our HIV/AIDS programme has succeeded to some extent due to changes in social morals: many teenagers are postponing sex; casual sex is declining, many unmarried adults are practising abstinence. High awareness about transmission of HIV/AIDS has been created; and the treatment of sexually transmitted diseases (STDs) has been enhanced. We tried to be very open about our situation.

35. Communities, churches, schools and public places like hotels and bars were all mobilised to spread the message on HIV/AIDS. • HIV/AIDS is talked about everywhere, in schools, over the radio stations, in newspapers and on the streets. • AIDS is also being taught in schools as part of Uganda's educational curriculum. • HIV/AIDS is not only a health problem but also a development one. It must be approached from a multi-sectoral angle.

36. There is need to form specific committees of Parliaments and local government legislatures to focus on HIV/AIDS activities; • Multi-lateral/bilateral organisations should continue to support Parliament/political leaders to play their role in the fight against HIV/AIDS. • There is need to promote and strengthen community involvement for instance the Community HIV/AIDS Initiative (CHAI) programs need to be strengthened with more funding.

37. There is also need to encourage the participation of faith based organisations in the campaign against HIV/AIDS through funding their initiatives on the fight against HIV/AIDS • Political leadership at various levels should play a fundamental role in the fight against HIV/AIDS through: resource mobilisation, advocacy, monitoring/ supervision and legislation of enabling laws

38. THANK YOU