Uganda: A Model of Success in HIV/AIDS Prevention, Treatment, and Care

Report of the Fact-Finding Mission of Representative Dave Weldon, M.D. (FL-15)

May 23 – May 29, 2003

Report Date: June 10, 2003

Executive Summary

As the worst public health dilemma of modern times, HIV and AIDS are exacting a toll on entire countries, regions, and continents that goes beyond morbidity and mortality statistics. In Sub-Saharan Africa alone, 25 million people are living with HIV/AIDS and nearly 14.8 million people have died through 1999.  The security of countries, the stability of economies and the existence of entire cultures are threatened by the immense scope of the HIV/AIDS pandemic. President Bush’s global AIDS initiative is an important and valuable effort to address this great human tragedy with real resources to save lives.

During a four-day visit to Uganda in May of this year, I met with President Yoweri Museveni, Ugandan health ministers, the CDC and USAID, and non-government and faith-based organizations involved in fighting AIDS in that country.  My interest was to develop a better understanding of how Uganda reduced its prevalence rate for HIV/AIDS to six percent.

President Museveni’s leadership mainly contributed to behavioral change, the removal of stigma toward those who are HIV positive, and the mobilization of civil society to address HIV/AIDS.  The result has been the reduction in casual sexual partnering in adults and a delay of sex for adolescents.  Combined with a multi-sectoral response from church and religious leaders, health practitioners, indigenous organizations, and outside interest groups, Uganda has emerged as the model for HIV/AIDS prevention, care, and treatment.

Here is what I found:

Ø      Political Leadership – President Museveni opened the door for every individual and organization to address HIV/AIDS.  He developed the ABC approach, which was quickly adopted by society to save lives.

Ø      Openness and De-Stigmatization – Societal acceptance to those infected with HIV/AIDS enabled the health community to provide treatment and care. Removing stigma allows individuals infected with HIV to seek treatment, to maintain their health, to adopt behaviors that reduce further infection, and to continue caring for their children.

  • Behavior Change – Uganda has demonstrated that behavior change is possible and it has led to the successful reduction in prevalence of HIV/AIDS.
  • Involvement of Civil Society – Uganda did not create success in fighting AIDS by investing large amounts of resources.  Instead it created an environment where all aspects of society, such as schools and religious institutions, work in partnership to save lives.

Conclusions and Recommendations:

  • President Bush’s global AIDS initiative is the right approach to addressing global AIDS because it features the successful model of Uganda.
  • Supporting faith-based organizations should remain a significant feature in the implementation of the global AIDS initiative because FBOs provide significant opportunities to mobilize volunteers and serve the most impoverished in the remotest areas.
  • Cost effective partnerships and innovations must be encouraged and scaled up to serve more people and save more lives.
  • U.S. Embassy efforts should assist Sub-Saharan heads of state to provide leadership to effectively address their own HIV/AID crises.
  • Special care needs to be taken in making available anti-retroviral therapies.  Consideration should be made to address the necessary medical support and infrastructure to provide ARVs in a responsible manner.
  • The Ugandan response to the proliferation of orphans takes great care to maintain critical family and cultural support systems.  Efforts to address the issue of AIDS orphans should focus on education, food aid and other indirect assistance that relieve the burdens of caring for additional children while maintaining family and cultural systems.
  • Lessons can be learned from Uganda to help us with the U. S. AIDS challenge.  Domestic HIV/AIDS programs must do more in seeking to reduce promiscuity to save lives and reduce infection rates rather then relying primarily on medical management of the disease to reduce prevalence rates.

Uganda: A Model of Success in HIV/AIDS Prevention, Treatment, and Care

U.S. Congressman Dave Weldon, M.D.

Background

Before being elected to the U.S. House of Representatives, I practiced medicine and cared for patients infected with HIV/AIDS.  My experience in HIV/AIDS, however, did not expose me to the disease and the destruction it has caused within the continent of Africa.

Earlier this year, as President George W. Bush prepared his global initiative to address the international HIV/AIDS pandemic, the President asked if I could help him make his initiative law.  I worked with Chairman Henry Hyde to ensure that H.R. 1298 include provisions promoting prevention education and the equal treatment of faith-based organizations to receive U.S. funding.

Uganda is the only country that has successfully and significantly reduced the prevalence of HIV/AIDS.  Uganda has reduced its HIV/AIDS prevalence to a little less than six percent from a high of more than twenty percent.  Therefore, I purposed to travel to Uganda from May 23 to May 29, 2003 to learn for myself the lessons and efforts that have made Uganda a model of success.

The scope of the AIDS epidemic in Sub-Saharan Africa is staggering.  In some countries a third of the population is infected.  More than 25 million people are living with HIV/AIDS and nearly 14.8 million people have died through 1999.  Uganda has registered more than 1 million orphans due to AIDS and an additional 2 million children currently have parents who are HIV positive.

Itinerary

My visit to Uganda included meetings with both U.S. and Ugandan Government representatives, non-government organizations, faith-based organizations, and individuals treating or caring for those infected and affected by HIV/AIDS.  These organizations included government-funded programs and those operated with private funds.  They included programs that focused on prevention, treatment, and care and that were both single sector and multi-sector.  I also had the privilege to meet with President Youweri Museveni.

Government programs included CDC Uganda, USAID, the Ugandan Ministry of Health, the Ugandan education sector, the Joint Clinical Research Center, and the Uganda Virus Research Institute.  Non-government programs included AIDchild, The AIDS Support Organization (TASO), the AIDS Information Center, Straight Talk/Young Talk, and the Mildmay Center.  Faith-based organizations included the Church of Uganda, World Vision, Kamwokya Christian Caring Community, Ugandan Christian University, Scripture Union, True Love Waits Uganda, The AIDS Intervention Program of Deliverance Church, the Catholic Medical Bureau, and the Islamic Medical Association of Uganda.

General Observations

Political leadership:  President Museveni was the major force in alerting and mobilizing his country to address HIV/AIDS.  He speaks out and enacts new initiatives to encourage abstinence, faithfulness in marriage, voluntary testing and counseling, and other prevention messages as a part of his personal platform for Uganda.  President Museveni has demonstrated his commitment to preventing HIV/AIDS and has led his countrymen so that each one feels a patriotic duty to fight HIV/AIDS.

Museveni’s bold engagement in HIV/AIDS led community and church leaders to speak out and address the epidemic in a way that resulted in significant behavioral change. According to Bishop George Katwesege, “The Church did not keep quiet.  We preached about AIDS from the pulpit.  Every opportunity was made to educate the community about HIV/AIDS including weddings and funerals.  We did not preach about condoms but about the dangers of early sex for school children and promiscuity for adults.”

Openness and De-stigmatization: Ugandans understand that openness regarding one’s HIV status and caring toward individuals who are HIV positive is a major public health and civic response that saves lives.  With information, education, testing and counseling, behaviors can be modified to reduce the risk of infection.  Because of the reduction in stigma, individuals who are concerned about their HIV status are easily able to be tested and receive counseling to protect their health and the health of their families.  This environment does not exist in many other African countries.

Canon Stanley Ntagali, Provincial Secretary for the Church of Uganda said, “Before, people who had AIDS were treated like lepers.  No one wanted to be near them and they stayed in their huts and waited to die.  This led to many orphan children without relatives or caregivers to support them.  Now that people are free to say they are HIV positive, they can receive treatment and stay healthy to look after their children.”

Real efforts to effect behavioral change: AIDS is a sexually transmitted disease in most instances, therefore, attempts to decrease HIV/AIDS prevalence without modifying sexual behavior will fail.  In Uganda there is strong scientific evidence that sexual behaviors were changed: chiefly the reduction in the number of sexual partners for those that are sexually active and the delay of sexual activity among adolescents.

This behavior change occurred through persistent efforts and messages in churches, schools, newspapers, radios, and political speeches.  The Government of Uganda instituted an aggressive campaign of information, education, and communication. President Musevini describes his job as to “shout and scare people to change their behavior.”

Much of this occurred before Western assistance was available in Uganda.  Ugandans marshaled their own human capital to address HIV/AIDS with the tools that they already possessed – communication from the Parliament and the pulpit, community action, and government mobilization in the health and education sectors.

Involvement of Civil Society: Museveni’s political leadership mobilized all aspects of society such as schools, community organizations, and religious institutions.  This leveraged the government’s limited resources and magnified the impact of their collective efforts.

Non-government organizations offered voluntary counseling and testing in 1987.  Churches and faith-based organizations worked to serve and treat Ugandans already infected.  Since 1990, the AIDS Information Center has provided first-time testing and counseling to half a million Ugandans.  Counseled individuals are encouraged to adopt a healthy lifestyle that includes eliminating risky sexual activity, eating well, abstaining from drinking and smoking, and exercising.

Communities and organization initiated clubs that encourage abstinence and the adoption of life skills to avoid HIV infection. Clubs were developed for those who have been tested, have pledged to remain abstinent, that encourage others to receive voluntary testing and counseling, and who support and encourage positive living for those infected with HIV.

Key Projects and Findings

During my visit, five specific programs stood out for their effectiveness, innovation, and work.  These programs are Scripture Union and The AIDS Intervention Program of Deliverance Church of Jinja, the Mildmay Center, Kamwokya Christian Caring Community, the Centers of Disease Control, Uganda, and World Vision.  Each of these programs are excellent examples of the kind of programs that are making a difference and reducing the prevalence of HIV/AIDS in Uganda.

World Vision

World Vision is a well-known Christian relief organization. World Vision Uganda provides programming in the area of HIV/AIDS, general health, education, food security and agriculture, economic development, water and sanitation, nutrition and childhood development, and other vital areas.  It operates on a budget of a little more than $10 million that serves over 62,000 children and their communities in 22 of the 46 Ugandan political districts.

World Vision, Masaka focuses on children, women, youth affected by poverty and HIV/AIDS.  Its innovative Interpersonal Therapy for Groups project provides counseling services in a group setting for individuals considered to be in severe depression.  A 2000 survey demonstrated that over 20% of Ugandans affected by HIV/AIDS show symptoms of severe depression.  Those invited to participate in the groups demonstrated a loss of interest in raising the children they were supporting, maintaining their homes and gardens, lost their appetite and ability to sleep, and expressed marked sadness.  The16 week process resulted in participants feeling better and re-engaging in activities and the community. Post intervention results demonstrated only 7% of participants reported depression compared to 54% of control group reports of depression.  The mental health aspects of fighting HIV/AIDS and caring for those affected by HIV/AIDS should not be over looked.

Kamwokya Christian Caring Community

Started in 1987 by members of the community in conjunction w/ the local Catholic parish, Kamwokya Christian Caring Community serves the poorest of the poor who live in the slums of Kampala.  The program focuses on HIV/AIDS, street child prevention and services, and pastoral care.  The community noticed that many HIV positive foreigners from Sudan, Rwanda, and Congo would come to Uganda for treatment or assistance and eventually die, leaving their children in the slums of Kampala burdening the community with uncared for children.

KCCC cares for about 188 children with education provided at the local Catholic Church and food commodities provided by USAID and Uganda’s food assistance program.  It also provides basic housing for HIV/AIDS patients who are homeless.  Volunteer physicians and nurses serve about 250 people a month in their tiny clinic that serves the 45,000 people of the community.  Kamwokya is incredibly dense with approximately 5,000 people per square kilometer.

A major cost to this ministry is the disposal of the remains of those who die of AIDS.  Considerable resources are diverted away from feeding, caring and other services for the living to cover the costs of burying the dead.  This need should not be overlooked by US assistance efforts.

Mildmay Centre

Mildmay provides HIV/AIDS training for physicians, nurses, counselors, lab techs, religious leaders, teachers, care takers, and business.  During our visit, some Mildmay staff were away at the Coca Cola plant providing training and education for plant employees.  Mildmay houses its own clinic for patients with severe persistence or recurrence of physical symptoms and problems related to HIV/AIDS.  TASO, AIC, other HIV/AIDS service organizations refer these patients to Mildmay.  Mildmay maintains a mobile training team – a one-year program to help rural HIV/AIDS care workers.

The Center is a model of training and sharing of effective information on the treatment and care of HIV/AIDS.  It could serve as a major training site for medical professionals in the proper administration of ARVs.  Mildmay trains people from all over the region and other countries in Africa and Asia.  Its services are open and available to all and Mildmay is participating with the CDC Uganda in providing cotrimoxitol (a cheap and effective antibiotic) prophylacticly to protect against opportunistic infection and malaria in HIV positive patients.   Mildmay hosts Jajja’s home, a children’s day program for HIV+ children.  They receive educational services, nutritional meals, and medications including antiretroviral therapy.    They take all children regardless of need.

Scripture Union, Widow’s Mite, The AIDS Intervention Program, True Love Waits

Scripture Union is a faith-based evangelical organization with an HIV/AIDS program called Aid for AIDS that focuses on children, adolescents, engagement/pre-marriage, marriage enrichment, and positive parenting. Because of its popularity Scripture Union’s last marriage enrichment retreat turned many couples away.    Scripture Union is reaching out to tens of thousands of people across Uganda with their programs.  They have served 9,100 adults in positive parenting, 406 young singles, 63,000 youth, and 63,000 children with the messages of abstinence and faithfulness and promote the True Love Waits effort to encourage adolescents to remain sexually abstinent.

The AIDS Intervention Program, a ministry of the Deliverance Church of Jinja has been providing rural HIV/AIDS care in rural Uganda for 13 years.  They network with about 500 groups and have trained about 1,500 volunteers for HIV/AIDS care and counseling.  They have trained 35 FBOs for capacity building.  Their TORCH program has educated 5,000 adolescents and rewarded them with a pig, goat or agricultural product as a way to encourage them to delay sex until marriage and to assist them in income generating activities.

Widow’s Mite provides support and care for women whose husbands have died.  Established in 1991 with two workers, it has grown to serve more than one thousand women who have lost their husbands.  Widow’s Mite now has a staff of five and is entirely dependant on individual gifts and income generating activities like operating a peanut grinding machine and selling peanut butter.

Widow’s Mite fights stigma by accepting widows and orphans and helping them generate income, counseling them, and helping them send their children to school.  They provide support to families and vocational training to widows and their children who have dropped out of school.

Centers for Disease Control and Prevention, Global AIDS Program, Uganda

CDC Uganda is engaged in activities that will benefit Ugandans fighting HIV/AIDS.  It is initiating creative, low cost programs that will improve the health of HIV positive individuals and their families and save lives.  CDC is also providing invaluable assistance to the Ugandan government, non-government organizations, and faith-based organizations through data collection, record keeping, and program development.

CDC Uganda has produced impressive research results from two innovative programs.  The Safe Water System program works to prevent opportunistic infections and mortality by ensuring safe and clean water.  By simply providing a plastic container with a tap, a diluted solution of chlorine, and rudimentary filtration with a piece of cloth, significant reductions in diarrhea can be achieved for less than $10 dollars initially and $5 a year, thereafter.  Through the Safe Water System program, diarrhea was reduced by 30% in children and adults with HIV/AIDS.

In addition, CDC is pioneering the prophylactic use of cotrimoxazole, an inexpensive and easily available antibiotic to prevent opportunistic infections and the transmission of malaria.  Cotrimoxazole therapy reduced the incidence of malaria among persons with HIV by 50%.  In addition, malaria was reduced by 25% among HIV negative household members when an HIV-positive family member was taking cotrimoxazole.  Further, cotrimoxizole reduced mortality among persons with HIV by 50% regardless of baseline CD4 cell count.  Using cotrimoxizole reduced diarrhea, malaria and death while having very few side effects for about $15 a year.

Implications for U.S. Foreign Assistance on HIV/AIDS

My trip convinced me that the priorities reflected in H.R. 1298, the global AIDS bill, are the right priorities to effectively reduce the prevalence of HIV/AIDS in Sub-Saharan Africa. This legislation makes Ugandas successful ABC approach public policy.  It also emphasizes the contributions that faith-based organizations are making to change behaviors, treat the infected and care for those affected by HIV/AIDS.

As this legislation is implemented, I believe it is imperative to maintain the features that have saved lives in Uganda.  By doing so, the American people can be sure of getting the greatest impact for the federal funds appropriated to fulfill the intent of Congress.  The programs I visited specifically illustrated the importance of scaling up and replicating the Uganda model throughout Sub Saharan Africa and the Caribbean.  For example:

Faith-Based Volunteerism These programs demonstrate that faith based organizations are effective in mobilizing significant numbers of volunteers, training them to be competent in providing education and counseling, and in helping people change behaviors to protect their health.  The Aid for AIDS and The AIDS Prevention programs also show the benefits of single sector approaches.  These programs need not promote condoms or reproductive services in order to effectively support HIV/AIDS prevention programs or promote voluntary testing and counseling.  Moreover, many faith-based programs function on little if any government support – either foreign or domestic.  Small amounts of targeted support could go a long way in expanding and enhancing the effect of these programs.

Capacity Building and Effective Partnerships One of the most significant issues raised in my trip to Uganda centered on the capacity of indigenous organizations to effectively deliver services.  The Mildmay Center and the CDC and USAID are addressing the issue of capacity in a very effective manner.  They exemplify cooperative partnerships by exploring opportunities for training, caring, and the application of new innovations in the clinics and in the field.  Mildmay provides short and long course training formats in a wide array of specialties addressing the entire spectrum of holistic HIV/AIDS care and management.  Health professionals, religious leaders, senior officials and HIV-affected families are all benefiting from Mildamy’s technical assistance and capacity building programs.  The work of the CDC and USAID in Uganda provide an excellent example of cooperation, assistance, and innovation.  Both organizations leverage their technical expertise with a macro sense of organizational assets and opportunities to build capacity and help indigenousness organizations effectively serve more people. I was impressed that USAID did not place boundaries on assistance to organizations working to make a difference whether they were faith-based or secular, clinical or educational.

Innovative, Practical Solutions to Complex Problems Providing services to those who need them is always valuable, but even more valuable is creating innovative solutions to difficult problems where little infrastructure or support exists.  Both the CDC and World Vision demonstrate that good ideas that help people need not require bureaucracies or large staff.  World Vision is addressing the complex problem of psycho-social support by adapting group therapy to the Ugandan HIV/AIDS pandemic. Likewise, CDC’s safe drinking supply/cotrimoxazole project uses low cost, easily replicable innovation to crate dramatically effective means to improve health outcomes.  The CDC program simply adapts the widely used convention of gathering water in jerry cans to one that vastly improves sanitary conditions.  I am confident that these innovations can be scaled up significantly to assist HIV infected individuals and communities.

Each of these examples is part of the model that is working and producing results in Uganda.  While there exists a high level of support from the Ugandan government, the elements can be replicated in any country and should be made priorities toward implementation of the global HIV/AIDS assistance legislation.

Final Analysis

While many people have been quite discouraged by the magnitude of the HIV problem in Africa, the Uganda experience should give us all reason for hope and optimism.    President Museveni has continued his strong leadership by demanding specific activities to prevent HIV/AIDS.  In March of this year, Museveni mandated school assemblies every two weeks to continue the message of prevention and abstinence.  Museveni, members of the Ministry of Health, and the CDC are concerned that as treatment and the provision of ARVs improves the quality of life and reduces mortality, younger Ugandans may become more promiscuous.  This perception could threaten the gains made by Uganda to reduce its HIV/AIDS prevalence.

As the latest phase of Uganda’s education sector responds to HIV/AIDS, it is implementing the Presidential Initiative:  AIDS Strategy for Communication to Youth.  The program stresses primary prevention in the form of abstinence, healthy relationships, and proper hygiene and reproductive health.  The goal is to keep children affirmed in prevention and includes messages like “Virginity is Healthy for Boys and Girls.”

Recommendations

In order to support the Global AIDS initiative recently signed into law, I recommend the following based on my experience in Uganda:

  • President Bush’s global AIDS initiative is the right approach to addressing global AIDS because it features the successful model of Uganda.  P.L. 108-25 makes ABC (Abstinence, Be Faithful, Use a Condom) public policy for international HIV/AIDS assistance.  Emphasis for the ABC approach must be maintained in implementation of the initiative and in program development and support.
  • Support for faith-based organizations must remain a significant feature in the implementation of the global AIDS initiative because FBOs provide significant opportunities to mobilize volunteers and serve the most impoverished in the remotest areas.  Efforts must be made to reach out to existing groups that serve remote areas and have existing infrastructure and organization.  This typically exists in churches and faith-based organization already present in Sub-Saharan Africa.
  • Cost effective partnerships and innovations must be encouraged and scaled up to serve more people and save more lives.  In addition to expanding and enhancing main-stay interventions like voluntary testing and counseling, agencies should consider innovative programs that address HIV/AIDS in a complementary manner.  World Vision’s Interpersonal Therapy for Groups and CDC’s Safe Water Supply programs provide significant benefits for individuals, families, and communities infected and affected by HIV/AIDS.  These innovative programs should be identified and encouraged.
  • U.S. Embassy efforts should assist Sub-Saharan heads of state to provide leadership to effectively address their own HIV/AID crises.  Much of Uganda’s success in addressing HIV/AIDS has been credited to President Youweri Museveni’s leadership in speaking out against the pandemic and marshalling community resources.  Other countries in Sub-Saharan Africa, however, are still reticent to acknowledge their own HIV/AIDS crisis and create the kind of environment necessary to effectively combat it.
  • Special care needs to be taken in making available anti-retroviral therapies. Increasing the provision of anti-retroviral therapy will encounter significant challenges, particularly in getting these drugs out to rural clinics with little infrastructure – if any.  Consideration should be made to address the necessary medical support and infrastructure to provide ARVs in a responsible manner. While attempts to provide ARVs are pursued, the value of low cost initiatives like CDCs clean drinking water and clotirmazole prophylaxis should not be neglected as these programs are far less expensive and can dramatically reduce morbidity and mortality.
  • The Ugandan response to the proliferation of orphans takes great care to maintain critical family and cultural support systems.  Efforts to address the issue of AIDS orphans should focus on education, food aid and other indirect assistance that relieve the burdens of caring for addition children while maintaining family and cultural systems.  In Uganda, caring for orphan children is the responsibility of extended families resulting in low numbers of street children.  Alternatives to institutionalize the orphan issue will do damage to culturally preferred and healthy systems that maintain family and community cohesion.

My experience in Uganda underscores some policy aspects of domestic HIV/AIDS programs that could more effectively reduce the prevalence of HIV/AIDS in the United States:

  • Domestic HIV/AIDS programs must do more in seeking to reduce promiscuity to save lives and reduce infection rates.  Instead, current interventions rely on the medical management of the disease to reduce prevalence rates.  Federal HIV prevention programs must begin featuring risk avoidance messages that promote abstinence and a reduction of sexual partners.  HIV prevention programs have, instead featured other messages, which have had no effect over the last decade.
  • Uganda provides mandatory testing of pregnant women so that prevention of mother-to-child transmission can occur.  The United States, with the exception of New York and Connecticut, has no such policy and, therefore, hundreds of children are born each year infected with HIV, which is completely preventable.  Implementing a policy of mandatory testing of pregnant women for HIV could virtually eliminate domestic mother-to-child transmission, saving the lives of hundreds of babies and hundreds of thousands of dollars in HIV/AIDS treatment and care each year.
  • Relatively little penetration of HIV has occurred in heterosexual populations in the United States.  A significant problem exists, however, in intravenous drug users and homosexuals, which are particularly resistant to efforts intended to prevent HIV/AIDS infection.   The impressive level of behavior change that has occurred in Uganda suggests that behavior changes that focus on reducing promiscuity be given greater emphasis in the homosexual community.

Conclusion

The HIV/AIDS pandemic has claimed too many lives.  Fortunately, one country – after surviving years of political tyranny and exploitation by its leaders, and then realizing that nearly a third of its population was suffering from an incurable deadly disease – is proving a model by which HIV/AIDS can be conquered.

Uganda’s 23 million people possess a determined and dedicated spirit that has addressed HIV/AIDS head-on.  Ugandans have looked within themselves and changed their personal behaviors to avoid further death.  They have rallied and in many ways have prevailed.  The experience of Uganda is one of hope.

Uganda is not out of the woods.  By capitalizing on foreign assistance, Uganda is working to enhance its most precious natural resource – its people.  The United States is responding to Uganda’s success and should use the lessons learned from Uganda to help other nations struggling with HIV/AIDS.  U.S. assistance must work to put in place those components of leadership, open-ness, civil society mobilization, and effective prevention in other nations so that lives may be saved.