OpenForum – a blog by the Health and Human Rights community

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.

[Editor’s note: For further discussions of participation and the right to health, see the latest issue of Health and Human Rights, now available with full text online.]

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. Read more

Claudio Schuftan (CS) and Ted Greiner (TG)

[Editor's note: this post is the latest and last installment of an ongoing discussion on the merits of exclusive breast feeding versus formula feeding for HIV-positive mothers. Dialogue on this issue began with an article by Dr. Binagwaho in Health and Human Rights, followed by a Perspectives piece by Dr. Schuftan. Dr. Binagwaho continued the exchange with a post on OpenForum, to which Dr. Schuftan and Ted Greiner, PhD, have responded below. We encourage readers of OpenForum to weigh in on this issue through comments on this post.]

We are of the opinion that, in her response, Dr. Binagwaho misinterprets the human rights of these newborn infants and somehow tries to turn the tables on the readers of this blog using fallacious arguments. She now tries to directly link my original argument (CS) to the arguments fought around the introduction of ARV treatment in Africa in its early stages. Our disagreement with her now centers around how she uses the AFASS criteria argument (acceptable, feasible, affordable, sustainable and safe) which she, in our view, lightly assumes are realistically achievable in Rwanda. She actually puts the emphasis on the cost-free-distribution-of-infant-formula which she rightly says would in theory be compatible with HR principles. Read more

Dr. Claudio Schuftan’s response to my article advocating that HIV-positive mothers in resource-poor settings bottle-feed according to acceptable, feasible, affordable, sustainable and safe (AFASS) criteria rather than breastfeed their infants employs the same line of reasoning used in the late 1990s to not treat HIV-positive Africans with antiretroviral drugs. In fact, we can see his argument unfold below by replacing the terminology about bottle-feeding (crossed out) with ART (antiretroviral therapy, indicating access to triple therapy) terminology (added in red italics):

• “Economic access to six or more months of infant formula supplies ART is not realistic for poor mothers people living with AIDS in poor countries — nor, either, is access to clean water.”
• “Of course we need to set the same human rights objectives for ourselves in the global South as those set in the North. However, as public health nutrition infectious disease experts, it is our obligation to acknowledge the local reality of HIV and AIDS affecting important segments of the poor population in our respective milieus. That reality shows us that economic access to infant formula ART does not exist for vast numbers of affected women people living with AIDS.”
• “But the choice of whether to bottle-feed take ART or not is not really at the forefront for a woman person living with AIDS who cannot afford adequate food, has no adequate housing or access to safe water and sanitation, employment and education, let alone a right to gender equality health care.”

At that time, this was the same type of controversy, with good people and good intentions on both sides of the discussion. But thank goodness we didn’t listen to the majority of those who believed that the lack of financial resources and lack of education would prevent Africans from being able to take their ART medication correctly. We can now see that in fact these same uneducated, poor Africans are more adherent than Western populations. History has proven that the faithful activists, who believed that lack of financial resources was no excuse for providing substandard care, were right. Read more