Youth coming together for health/HIV sensitization through entertainment and a song competition. Photo credit: CNLS/PSI/UNAIDS 2006 Kigali

Adolescents remain a neglected group in Rwanda’s health care model according to a new report on adolescent health by Dr. Agnes Binagwaho, Permanent Secretary of Rwanda’s Ministry of Health. While the country’s health care infrastructure has vastly improved since 1994, so that vulnerable groups such as mothers, infants, and people living with HIV/AIDS experience better health outcomes, few efforts focus on behavioral and preventative health care for adolescents. Dr. Binagwaho argues that adolescents are a neglected group in the country’s health care model primarily because they are considered comparatively healthy with a low disease burden. Yet the choices adolescents make today affect their health — and the health of their families — in the future, especially as these choices relate to family planning and STDs.

The new report emerges from Dr. Binagwaho’s research on the gap between the right of HIV-infected children to health services and the reality in Rwanda. Finding little research or advocacy focused on adolescent health, Dr. Binagwaho decided to undertake the task herself. She found that although adolescents may be equipped with knowledge, they lack “life skills,” for example, the ability to negotiate safer sex or to seek the help of family planning services. She offers practical suggestions for addressing this gap, including policy changes, training, and social support designed specifically for adolescents.

The report’s Executive Summary is provided below. Her full report on “Adolescent Health in Rwanda” is available here.

The Government of Rwanda, supported by outside partners, has been able to significantly improve the health status and HIV services of the population in the last decade. Life expectancy increased; infant, child and maternal mortality has been reduced; and the spread of HIV/AIDS has been contained. Nevertheless, there is still a lot of room for further improvement of health care in Rwanda, in particular by increasing access to quality health and HIV care services.

One area that has been widely neglected in Rwanda is the adolescents health. A comprehensive strategy to advance health services (including STIs and HIV prevention and treatment) that meet adolescent needs is presently missing but absolutely in light of the fact that adolescents make up about a third of Rwanda’s population.

Adolescents are often perceived as healthy, since they face a relatively low disease burden. While this is true regarding traditional measures of disease burden such as DALYs, adolescents impact their immediate and their future health outcomes by their behavior today. Therefore, compared to other age groups, adolescent health and HIV status are concerned with a higher share of preventive and behavior changing health services compared to curative health services.

The key health issues faced by Rwanda’s adolescents today are related to reproductive health, including family planning, STIs and HIV – which is particularly important given its public health implications. Mental health and substance abuse are perceived as an important but less pressing health concern in Rwanda. Injuries and accident-related traumas – often a main health threat for adolescents in developed countries – seem to be less relevant in Rwanda.

Several challenges to improve adolescent health and sexual and reproductive health in particular, exist in Rwanda: Even though adolescents’ knowledge about protective health behavior and risk factors for poor health has increased, there is a clear gap between knowledge and the ability to apply it in critical situations – including situations that increase the risk of HIV infection. A lack of independence and assertiveness, such as being able to negotiate safer sex, is perceived as an obstacle to better health through reduced risk behavior.

Despite an impressive rebuilding of the whole health care system since 1994, youth-friendly health services are still widely missing. This is true for all the component of a clinical program, such as infrastructures, personnel trained to meet adolescents’ needs, and guidelines defining HIV packages for this group. 43% of the children surveyed were treated with adults, – 6 – not in a separate pediatric ward. Furthermore, 90.7% of children and their parents stated that they felt the need for the establishment of an adolescent ward. Finally, in a hierarchical society with strong roles and norms, social pressure on adolescents regarding their behavior is another factor that often hinders adolescent health seeking behavior. In particular if HIV and family planning services are not used by adolescents due to fear of social consequences, and in the absence of relevant information provided by adult family members, this can lead to worse health outcomes.

Findings in this report indicate that:

1. Policies should ensure that adolescents not only receive technical health and HIV information, but are also trained in how to apply this knowledge in their daily life. To achieve adequate adolescent training and education, health care providers have to be sensitized on this issue and enabled to provide this kind of training.

2. To ensure adolescent access to high quality health and HIV services, adequate guidelines infrastructures, and trained personnel must be available to ensure that quality youth-friendly services can be offered.

3. Social support has to be ensured for adolescents. This should include a very wide array of activities and interventions aimed at actively engaging adolescents in changing social norms limiting their access to health and HIV services. Messages concerning adolescent health, such as HIV and STI prevention and treatment, should be included whenever possible in adolescent related activities.

4. A national adolescent health policy should be developed as an instrument to establish a common policy base between relevant ministries, agencies, health partners and civil society – thereby ensuring the necessary support to provide an implementation framework and to keep institutions accountable. This policy should also define a national mechanism for coordination between government institutions, as well as between government agencies and partners working in adolescent health and HIV issues.

Participation is a right situated at the very heart of the human rights vision. Participation holds this central place because it requires and activates the full range of other human rights. People can only fully exercise their right to participation if they are correctly informed and free to express their views on the situation in which they live, the priorities that should be emphasized, the actions to be taken, and the way in which those actions should be implemented, followed-up, and evaluated.

My experiences as a manager of national public health programs has taught me that no solid, lasting progress in health is possible without applying the principle of participation. I would like to illustrate this point through several examples that have an impact on my daily work.

In 1994, the genocide in Rwanda completely devastated our health system. The infrastructure was destroyed. Human resources were drastically diminished by the massacres and by the departure of people who either feared being killed or were taken hostage by the genocidaires as they fled.

Today, 15 years later, we still have a long road ahead, to build the optimal health system for our country. We are far from declaring ourselves satisfied. However, we have managed not only to recoup the losses of the genocide period but to improve substantially on what existed before 1994.

Our health indicators show that we are on the right path in our construction of a robust health system based on the principle of universal access to health, with a special focus on the most vulnerable individuals.

Presently, in Rwanda:

• Health insurance now covers 92% of all Rwandans, including 83% at community level;
• The uptake of curative care has tripled;
• Vaccination now covers more than 90% of children;
• Malaria mortality has been reduced by 2/3; and
• 70% of HIV-positive people in need of ARV treatment are receiving it.

To reach this result, we have relied on the effective contribution of all of our people — thus we have relied on participation.

The involvement of all stakeholders means that communities, civil society, and both the private and public sectors are involved.

For the community sector, participation is enabled through massive information campaigns on the right to health and through training. We raise awareness about people’s responsibility to participate in goal setting, decision making, and the fight for transparency and against corruption. The goal is for each dollar to buy the greatest possible amount of health while respecting equity.

This is written into Rwanda’s Community Health Policy: “Community Health is seen as a holistic and integrated approach that takes into account the full involvement of communities in planning, implementation and evaluation processes, and assumes communities to be an essential determinant of health and the indispensable ingredient for effective public health practice.”

The principle of participation is also applied in the public sector. The public sector departments of education, infrastructure, roads, energy, water, finance, social issues, gender, foreign policy, cooperation, and so forth must all participate actively in the work of the health sector if we want health action to respond effectively to demand. The requirement for participation is included in the “Manual of Procedure of the Ministerial Cabinet,” which stipulates that no policy, ministerial instruction, or legislative proposal can be discussed in the Cabinet without ensuring that all those constituencies who may be affected have been informed and have actively participated in developing the proposal to be discussed.

With civil society and the private sector, the lessons drawn from their active, synergistic participation in the response to the HIV pandemic have recently been expanded to the whole of the health sector.

The fight against HIV/AIDS is based on the concept of GIPA: “Greater Involvement of People Living with HIV/AIDS: Never do for us without us.” In each of nine sub-sectors — PLWHA, faith-based organizations, community-based organizations, transportation, media, the private sector, people living with disabilities, and young people and women — Rwandan NGOs have formed what we term “umbrella” groups to enable and coordinate participation. These groups have identified representatives who can speak for their interests in each district and at the central government level.

Today, the nine umbrella organizations involved have transformed themselves into “Umbrellas for the fight against HIV/AIDS and the promotion of health.” Their representatives participate in decision making, planning, follow-up, and the evaluation of health sector activities at the district and central levels.

We all know that a healthy population accelerates development. I hope that I have been able to show you why, on Rwanda’s path to development, the urgency of action makes the principle of participation in the health sector indispensable. Health is also coordinating with other sectors. For participatory efforts to be effective and sustainable, they must be anchored institutionally and taken forward using a multi-sectoral approach.

Community health worker administering medicine in Rwinkwavu. Photo courtesy of Partners in Health.

[Editor's note: In addition to Dr. Binagwaho, Dr. Fidele Ngabo, Cathy Mugeni, and Niloo Ratnayake also contributed writing to this post.]

Access to care in resource-constrained countries has three major barriers to overcome: finances, infrastructure, and geography. Community health workers (CHWs) are an unavoidable solution for both infrastructure and geography. The Government of Rwanda has recognized that CHWs are necessary in order to improve access to health in rural communities. By using CHWs, with their approach to health at the community level, Rwanda hopes to solve 80% of health problems in the country.

Rwanda has set up a system where each village (100 to 150 households) elects two volunteers to act as CHWs for the general population. Because each community votes on one woman and one man to serve the village in this capacity, becoming a CHW is now a position of respect, raising gender equity throughout Rwanda.

These two CHWs are then trained to monitor growth and development in children, to care for people living with HIV, and to refer sick patients to the nearest health facility. Their training is designed by the Ministry of Health, which enables them to provide services in a harmonized manner throughout the country. By sensitizing the local village and making themselves available, they improve access to care; because of CHWs, a greater number of previously unreachable Rwandan citizens now have access to care. The CHWs trained this year to provide services to their villages are trained to treat certain diseases using amoxicillin and to distribute family planning tools (condoms, contraceptive pills, and injectable contraception).

Taking lessons from the work done by the associations of persons living with HIV/AIDS at the community level, Rwanda dedicated two other village-elected CHWs, one woman and one man, to dealing solely with end-of-life issues. These CHWs are responsible for caring for people in the late stages of any disease, which helps ease the burden on family members. Their care also decreases the number of dying patients brought to the hospital.

CHW explaining how to feed children and the meaning of the growth chart outside a house. Photo by Cathy Mugeni.

As there continues to be a high maternal morality rate in Rwanda, the Government is also training traditional birth attendants as CHWs to promote birth delivery at health facilities. CHWs are paid for every delivery they transfer to the local health center.

All activities are included in the health reporting system through reports that CHWs give to the Executives Secretary of each Sector, who in turn report activities to the Director of Health at the District level. At present, CHWs are all volunteers, but the Government of Rwanda is working on compensating these workers with performance-based financing and helping them to create cooperatives.

In conclusion, the five CHWs per village create community ownership, since it is the community who elected them. They also improve access to care and decrease hospitalization through what they manage at the community level. The harmonized training of all CHWs throughout the country is key. Community health workers are a smart and unavoidable solution that enables effective health care to bypass a lack of infrastructure in a resource-constrained country.

In his opening remarks, Dr. Kim challenged the audience to extend their rights-based framework beyond just conceptual clarity and advocacy to the level of implementation, noting that “effective programs are needed to ensure the human right to health.”

Dr. Binagwaho took the stage first and spoke of how Rwanda’s history, and particularly the role of state-controlled radio stations in the genocide, had demonstrated that the right to information was critical to protecting individuals. The Rwandan government sees information and communication technology as a top priority, and is working tirelessly to increase internet access nationally and achieve the goal of one laptop per child. This priority was clearly illustrated by the topic of last week’s Compton Lecture given at the Massachusetts Institute of Technology by His Excellency Paul Kagame, President of the Republic of Rwanda entitled Imperative of Science and Technology in Accelerating African and Rwandan Development.

Dr. Binagwaho reflected on the irony of research done in developing countries that is never available to the study subjects, and she applauded efforts like PLoS Medicine and Health and Human Rights for working to promote access to a wider audience. In addition, she stressed the need for intellectual exchange. She saw these discussions as “necessary to make the best decisions.” Citing the example of GHDonline.org, she told of the value for herself and others in executive positions to bounce ideas off of each other (for example, should children of HIV-positive parents undergo mandatory testing?) and also the value gained by including field workers in the conversation. “People at the community level may not have the theories, but they have the knowledge,” she said. Finally, she outlined that the sum of these efforts, of fighting for access to health, information, and education, is to eliminate poverty.

Dr. Yamey focused on the need to change the way we look at medical publications. He pointed out that information is so expensive to access that patients, and many doctors and researchers, simply cannot afford to survey the literature and make fully informed decisions. “Only a tiny fraction of the intended audience can read a work. This paradigm is wrong — medical research should be a global public good.” The consequences of the current model are hazardous: often, doctors and patients are forced to rely on abstracts, which convey “dangerous half-truths.” Also, because researchers in the global south often have less access to literature than their counterparts in the north, a dynamic of inequality is introduced in their interactions. The world would benefit from a “knowledge commons,” which would better allow research and practice efforts to “build on the shoulders of giants.” Dr. Yamey was instrumental in getting the journal online in an open access format, and he applauded the journal’s new format.

Tracing the history of the human rights movement, Mr. Alston reflected that the discourse had been dominated by lawyers, resulting in a legal focus that often failed to garner enthusiasm or trust among social advocates. While the civil and political aspects are critical, Mr. Alston emphasized the need to link that with the right to health. He also challenged the journal not to let its focus waver from what he considered the ultimate task at hand: making the case for the right to health. “Until we confront the right of every individual to health and health care, then we are not looking at the central concern, and we are failing to achieve our objectives.” Changing the political dynamics and infusing society with a sense of moral outrage about violations of the right to health were objectives that he also lay out for the human rights community.

Dr. Farmer described his relationship with human rights as a “voyage,” and credited Haiti for being his greatest teacher. It was in conversations with his Haitian friends and colleagues almost 20 years ago that he saw a divergence between the goals and values of the academic community and those who did not enjoy their basic human rights. He observed “the limited faith of the poor in the non-poor’s promise to protect their interests, including health, housing, and food.” This rift, along with others between legal frameworks and social advocates as outlined by Mr. Alston, needs mending and harmonization. Citing an example of Russian prisons fighting TB epidemics and outcries that prisoners were starving to death, he said that “it is of utmost importance to get the diagnosis right in human rights. It determines whether we apply the right treatment.” His hope for the journal is that it will bring the discourses together in an “honest way,” and he was excited about the new format, adding, “The internet provides an opportunity to push through an agenda that is pro-poor.”

A reception in honor of Dr. Jonathan Mann, founder of the journal, concluded the event. Two of his children, along with Drs. Kim and Farmer, both of whom knew Dr. Mann very well as an early supporter of Partners In Health, shared some of their memories and told of his influence on their lives and that of many more, adding that he would be thrilled with the new direction the journal is taking.