A boy was dying in this Rwandan community. Here's why they broke the rules to treat him.

Wendy Leonard knew that Rwandans were experiencing an HIV/AIDs epidemic when she visited in 2006. But she uncovered a crisis that was even bigger than she could’ve imagined.  

She had come from the United States to help make sure healthcare workers were following the Rwandan Ministry of Health protocols for treating HIV in pregnancy and in young children — protocols that included complicated paperwork and triage for patients that were in the most urgent need of care.

But here's the thing ... those protocols weren't always helpful. In fact, during her first two trips to a rural community called Ruli in 2006 and 2007, Leonard found that they were actually making things more confusing.


Women preparing food in Ruli, Rwanda. All images provided via The Ihangane Project.

On one of her trips, local doctors had a young, HIV-exposed patient who was very ill. Usually the patient’s condition determined which set of guidelines to follow, but because this young child’s condition didn’t fit perfectly into any single protocol, his doctors felt helpless.

“Those doctors didn't necessarily trust their own judgment,” Leonard explains. “And then honestly, they weren't sure it would matter, because they thought this kid was going to die anyway.”

And this wasn't the first time she noticed the local doctors having trouble with the protocols in place.

For example, tracking data and keeping up with medical records was a complicated process that involved making calculations by hand. Plus, it wasn’t a priority to follow the government’s rules for HIV treatment since HIV wasn’t the only pressing health problem families faced.

“That was the moment that I really felt, okay, we need to figure out how to help people take the tools they have and make [them] work for them — as opposed to [saying] they have to follow these rules because someone upstream gave them to them.”

So, rather than simply dictating protocols, she decided to listen first to the Ruli community and their needs.

Dr. Wendy Leonard with TIP data specialist Theophila Huriro Uwacu. Image provided via the GenH Challenge.

She brought their feedback to the Ministry of Health, along with a recommendation to shift their approach toward supporting local leaders and strengthening existing health systems.

“In different forms, this is what we have been doing ever since,” Leonard says.

But that was just the beginning of the support Leonard brought to Ruli. In 2008, she founded The Ihangane Project (TIP), a nonprofit that initially aimed to reduce rates of HIV and malnutrition on a local level.

TIP’s first project was to try and establish mobile HIV services at several of Ruli’s rural health centers. However, they couldn’t actually set up those services due to a lack of grid electricity. So they adjusted, and brought the mobile services along with solar electricity that continues to power those health center sites today.

Image provided via The Ihangane Project.

It’s just one example of how The Ihangane Project’s vision has adapted.

In 2017, Leonard proudly announced that TIP had achieved its first goals. Ruli had seen a whopping 160% drop in mother-to-child HIV transmission, with zero new cases in over a year. For HIV-exposed children, malnutrition decreased dramatically by 65%.

And they're not stopping there.

The team aims to improve health systems throughout Rwanda by creating a model to help communities access quality healthcare, even with limited resources.

In one innovative example, The Ihangane Project has created a digital tool, called E-Heza, which helps keep medical records up to date.

E-Heza automatically creates a digital health record, makes the necessary calculations, and sends the data to government health officials. So health workers no longer have to keep up with the cumbersome process of calculating data by hand. Nurses and mothers participated in the process of designing E-Heza, so it’s created to meet their needs.

The new tool works both on and offline, which is helpful in rural communities that have limited internet access. And parents can see exactly how behavior like visiting the clinic regularly helps improve their child’s health.

A mom learns about her child's progress through E-Heza. Image provided via The Ihangane Project.

In this way, E-Heza is aiding health education, and building community within health centers. That’s why Leonard and her team hope to bring E-Heza to all of Rwanda by the year 2020.

And, thanks to funds they’ve received as finalists in the GenH Challenge for innovative health projects, they’re already well on their way. In fact, they’re piloting the E-Heza Digital Health Record program in nine Ruli health centers in 2018.

Now, with The Ihangane Project’s model, a sick child in Ruli doesn’t have to wait for doctors to figure out the proper protocols to save their life.

A mom and her child get ready to receive care at a health center in Ruli. Image provided via The Ihangane Project.

Instead, local healthcare workers and parents will have the tools and understanding to take back control. They know that supporting a child’s own community first and foremost is vital to their health, rather than waiting on outside assistance from the government or other aid workers.

And while the Ministry of Health’s support is crucial, and Leonard’s expertise was important, she couldn’t have made this incredible vision a reality without the community of Ruli.

“They have the solution,” Leonard says. “They might not have the exposure to all the possibilities, but they understand the challenges and they understand their potential.”

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Disney has come under fire for problematic portrayals of non-white and non-western cultures in many of its older movies. They aren't the only one, of course, but since their movies are an iconic part of most American kids' childhoods, Disney's messaging holds a lot of power.

Fortunately, that power can be used for good, and Disney can serve as an example to other companies if they learn from their mistakes, account for their misdeeds, and do the right thing going forward. Without getting too many hopes up, it appears that the entertainment giant may have actually done just that with the new Frozen II film.

According to NOW Toronto, the producers of Frozen II have entered into a contract with the Sámi people—the Indigenous people of the Scandinavian regions—to ensure that they portray the culture with respect.

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Though there was not a direct portrayal of the Sámi in the first Frozen movie, the choral chant that opens the film was inspired by an ancient Sámi vocal tradition. In addition, the clothing worn by Kristoff closely resembled what a Sámi reindeer herder would wear. The inclusion of these elements of Sámi culture with no context or acknowledgement sparked conversations about cultural appropriation and erasure on social media.

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Sámi leaders met with Disney producer Peter Del Vecho in September 2019.Sámediggi Sametinget/Flickr

The Sámi parliaments of Norway, Sweden and Finland, and the non-governmental Saami Council reached out to the filmmakers when they found out their culture would be highlighted in the film. They formed a Sámi expert advisory group, called Verddet, to assist filmmakers in with how to accurately and respectfully portray Sámi culture, history, and society.

In a contract signed by Walt Disney Animation Studios and Sámi leaders, the Sámi stated their position that "their collective and individual culture, including aesthetic elements, music, language, stories, histories, and other traditional cultural expressions are property that belong to the Sámi," and "that to adequately respect the rights that the Sámi have to and in their culture, it is necessary to ensure sensitivity, allow for free, prior, and informed consent, and ensure that adequate benefit sharing is employed."

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Disney agreed to work with the advisory group, to produce a version of Frozen II in one Sámi language, as well as to "pursue cross-learning opportunities" and "arrange for contributions back to the Sámi society."

Anne Lájla Utsi, managing director at the International Sámi Film Institute, was part of the Verddet advisory group. She told NOW, "This is a good example of how a big, international company like Disney acknowledges the fact that we own our own culture and stories. It hasn't happened before."

"Disney's team really wanted to make it right," said Utsi. "They didn't want to make any mistakes or hurt anybody. We felt that they took it seriously. And the film shows that. We in Verddet are truly proud of this collaboration."

Sounds like you've done well this time, Disney. Let's hope such cultural sensitivity and collaboration continues, and that other filmmakers and production companies will follow suit.

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