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.

[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.

Human rights activists are used to fighting tough battles, we agree. But to win, it has to be for a human rights cause that is scientifically plausible. Can widespread bottle feeding for children born to HIV-positive mothers be implemented now (“safely for each child”, as she says) when currently “there is no plan for bottle feeding in resource poor countries”? Perhaps there is a good reason for there being no plan . . . UNICEF began supporting the provision of free formula, but stopped within a couple years. I (TG) would be happy to send readers a copy of the document in which they explain their reasons for this.

We do not say bottle feeding “is criminal” (as she implies), but we stand firm on our view that it would be irresponsible at this time “without proper preparation.” It is not about “ignoring bottle feeding if and when AFASS criteria are fulfilled”; it is just that ‘if and when’ is the key consideration for a human rights-based pronouncement in this case.

Bottle feeding will not be made safe just because someone solves a few of the many constraints to its safe use, some of which, like maternal education and the high standards of hygiene and sanitation required, will take time. (Keep in mind that a non-breastfed newborn is as immune incompetent as many AIDS patients, and thus needs a nearly sterile environment). So, for now, we need to view the aim of bottle feeding these particular infants as something somewhere in the path towards the progressive realization of their right to health.

An additional reason the analogy to the battle won over ART in Africa is fallacious is that the costs and logistics involved are simply not comparable. “The world having found a solution for providing access to ART” does not mean that the same can be done for bottle feeding by somehow ‘providing’ the AFASS criteria to families! Exclusive breastfeeding has shown to be the alternative that ultimately saves lives of these infants in the medium term.

Dr. Binagwaho’s assertion that “bottle-fed children were no more susceptible to diarrhea or acute malnutrition than the general population” goes against years of published evidence to the contrary. The only relevant data we know of comes from samples of children living in a large, relatively well-off city in Africa enrolled in a longitudinal study which, for ethical reasons, provided higher levels of follow up and care than infants get even in Northern countries. To date, the only published data on African infants living in a rural area and not receiving such unrealistic levels of follow up (Kagaayi J, et al., available here) found that formula fed infants were six times more likely to die. I (TG), in talks in various venues in Rwanda, have provided simulation data suggesting that Rwandan babies would achieve higher HIV-free survival by stopping breastfeeding at 12 months rather than the current policy of 6 months. (During the period 6-12 mo, ~8% will be HIV-infected or die if breastfed; 10-18% will die if formula fed.)

Dr. Binagwaho is right that boiling water is a matter of maternal education — but there are also financial and time constraints. It is often assumed incorrectly that the cost of formula and access to clean water are the major constraints. From my research in St. Vincent (TG), where bottle feeding had been taught for 30 years, I would argue that those factors are perhaps half the problem. Mothers with 10 years of education (extremely rare in Rwanda) often thought sterilizing the bottle once a day (or even just when it was purchased!) was enough. Few could afford bottle brushes, but shook sand in the bottle to try removing the film of milk inside or swirled a rag around in it with a stick, often scratching the plastic and creating an excellent location for further bacterial growth.

A caveat: Neither of us have ever said or implied that “because the milk industry will benefit, these mothers should not be allowed to prevent HIV transmission to their infants.” This was a low blow.

That “good follow-up (for safe bottle feeding) should be the standard practice to fight for” cannot be argued, but how realistic is this except in the far long term? The best approach might be to say that, yes, some day we will succeed in eliminating poverty, at which time Dr. Binagwaho’s approach will make sense. We caution against mixing up long-term and short-term goals — a common error in this discussion, more so when attributing it to a human rights violation. Human rights law does not call for countries to realize all rights immediately; instead, by ratifying UN human rights covenants, countries are supposed to make concrete plans towards achieving them, progressively, to the best of their ability. In the interim, our human rights obligation is towards the right to life, i.e.,  in this case, to save as many lives as we can given the economic and sanitary realities of the places where we work. A rapid rush toward bottle feeding of infants born to HIV-positive mothers will simply lead to more infant deaths, even if donors pay for it.

In summary, we never implied that, in the long run, bottle feeding should not be considered, because “it will cost too much money”, because “it will make the milk industry richer” or because “women are too uneducated to learn how to bottle feed properly”. Together with Dr. Binaghawo, we agree that “A human rights paradigm demands that we implement best practices for preventing mother-to-child transmission for all HIV-positive mothers, just as it requires us to provide all people the same enjoyment of basic human rights.”

• “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.

I am sure now that people living with HIV in Africa are thankful to those activists who fought for their lives. Even though it was not easy to implement in the beginning, in the long-term and for the majority of people it has been beneficial and life-saving.

All tools that may stop the transmission of HIV should be seen as medicine — for example, condoms in HIV-discordant couples. In the same spirit, we must see infant formula according to AFASS criteria as a medicine. Bottle-feeding should be discussed when it can be done safely for the child. Although breastfeeding is an option where there is no plan for bottle-feeding, there are some who say implementing bottle-feeding in resource-poor countries is criminal. No, only implementing without proper preparation is criminal. And at the same time, to ignore bottle-feeding when AFASS criteria are fulfilled as a best practice for HIV-positive mothers is also criminal.

The financial argument developed by Dr. Schuftan does not make sense and again is similar to the debate about providing ART medications to Africa. There is no African living with AIDS at the community level who can afford to purchase a lifetime supply of ART. There is also no African mother living with HIV at the community level who can afford infant formula to bottle-feed for her child’s first six months. The world has found a solution for providing access to ART through the Global Fund, PEPFAR, international foundations, and NGOs. The same can be done for bottle-feeding with AFASS criteria if we are willing to actually implement and put it into practice, and if people will stop shouting that this is not practical (like they did for ART). Rwanda has found a way to address the financial obstacles of providing antiretroviral therapy through global solidarity. Now over 70% of those in need are on treatment. Certainly having all HIV-positive mothers bottle-feed according to AFASS criteria will increase costs. But what is the cost of incorporating bottle-feeding into prevention protocols versus the cost of the percentage of children infected by HIV through breastfeeding and their treatment for life? We have found it acceptable to provide ART treatment for all children infected with HIV through breastfeeding; why is it unacceptable to find ways to provide appropriate, safe bottle-feeding?

Having limited access to clean water should also not be an excuse to provide this essential medicine to HIV exposed infants. We expect that HIV-positive children will take their medicine with the same water early in life and for life. This means teaching caregivers the importance of boiling water and using clean water. It is a matter of education. If we believe mothers can give clean water for children to take their medicine, it is not that much harder to believe they can be educated to clean a bottle as well. And as they know how to add proper proportions of hot water in flour or millet or couscous to cook for their family, they will easily learn how to do the same for formula milk.

Dr. Schuftan also argues that promoting bottle-feeding will fill the pockets of the milk industry, who are already rich. Of course, providing ART to the poor does not hurt pharmaceutical companies that make a profit off of this! This is no excuse to not provide this essential medicine. This argument should have zero impact on whether or not HIV-positive mothers should bottle-feed. It makes no sense to say that because the milk industry will benefit, these mothers should not be allowed to prevent HIV transmission to their infants.

Dr. Schuftan states that the Rwandan study which showed that bottle-fed children were no more susceptible to diarrhea or acute malnutrition than the general population demonstrated these findings only because these children had better follow-up. This only indicates that better follow-up is needed for all children in the world. It is not an argument against bottle-feeding. Having good follow-up should be the standard practice that we fight for. If good follow-up is needed to bottle feed children, then this should be implemented, especially if it means we will reduce the HIV transmission rate to infants.

In summary, Dr. Schuftan’s argument is to not implement bottle-feeding in resource-poor settings because: it will cost too much money, it will make the milk industry richer, and women are too uneducated to learn how to bottle feed properly . Although well-intentioned, these are extremely similar to the arguments in the 1990s for not giving another essential treatment to Africans: ART. A human rights paradigm demands that we implement best practices for preventing mother-to-child transmission for all HIV-positive mothers, just as it requires us to provide all people the same enjoyment of basic human rights.