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

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.”

Everyone can all use a little lift at the end of the week, and we've collected some of this week's best stories to provide just such a pick-me-up. Here are 10 things we want to share, just because they made us so darn happy.

1. Introducing Lila, the U.S. Capitol Police's first emotional support dog.

After the traumatic experiences of January 6th, Capitol Police officers could definitely use some extra support. Lila, a two-year-old black lab, will now serve as the department's first full-time emotional support dog. Look at that sweet face!

2. Speaking of the Capitol, take a look at this week's gorgeous solar eclipse behind the dome.

NASA Administrator Bill Nelson shared the stunning "ring of fire" image on Twitter. Always a treat when nature gives us a great show.


3. Colorado sees its first wild wolf pups in six decades.

In the 1940s, the gray wolf was eradicated in Colorado by trappers and hunters, with the support of the federal government. Whoops. This week, Colorado Parks and Wildlife has announced the first evidence of wild wolf breeding in the state, a sign of hope for the endangered species. Read more about the discovery here.

Photo by M L on Unsplash


4. 30-year-old singer with terminal cancer amazed and inspired with her performance on America's Got Talent.

Keep Reading Show less

Everyone can all use a little lift at the end of the week, and we've collected some of this week's best stories to provide just such a pick-me-up. Here are 10 things we want to share, just because they made us so darn happy.

1. Introducing Lila, the U.S. Capitol Police's first emotional support dog.

After the traumatic experiences of January 6th, Capitol Police officers could definitely use some extra support. Lila, a two-year-old black lab, will now serve as the department's first full-time emotional support dog. Look at that sweet face!

2. Speaking of the Capitol, take a look at this week's gorgeous solar eclipse behind the dome.

NASA Administrator Bill Nelson shared the stunning "ring of fire" image on Twitter. Always a treat when nature gives us a great show.


3. Colorado sees its first wild wolf pups in six decades.

In the 1940s, the gray wolf was eradicated in Colorado by trappers and hunters, with the support of the federal government. Whoops. This week, Colorado Parks and Wildlife has announced the first evidence of wild wolf breeding in the state, a sign of hope for the endangered species. Read more about the discovery here.

Photo by M L on Unsplash


4. 30-year-old singer with terminal cancer amazed and inspired with her performance on America's Got Talent.

Keep Reading Show less
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Each year, an estimated 1.8 million people in the United States are affected by cancer — most commonly cancers of the breast, lung, prostate, and blood cancers such as leukemia. While not everyone overcomes the disease, thanks to science, more people are surviving — and for longer — than ever before in history.

We asked three people whose lives have been impacted by cancer to share their stories – how their lives were changed by the disease, and how they're using that experience to change the future of cancer treatments with the hope that ultimately, in the fight against cancer, science will win. Here's what they had to say.

Celine Ryan, 55, engineer database programmer and mother of five from Detroit, MI

Photo courtesy of Celine Ryan

In September 2013, Celine Ryan woke up from a colonoscopy to some traumatic news. Her gastroenterologist showed her a picture of the cancerous mass they found during the procedure.

Ryan and her husband, Patrick, had scheduled a colonoscopy after discovering some unusual bleeding, so the suspicion she could have cancer was already there. Neither of them, however, were quite prepared for the results to be positive -- or for the treatment to begin so soon. Just two days after learning the news, Ryan had surgery to remove the tumor, part of her bladder, and 17 cancerous lymph nodes. Chemotherapy and radiation soon followed.

Ryan's treatment was rigorous – but in December 2014, she got the devastating news that the cancer, once confined to her colon, had spread to her lungs. Her prognosis, they said, was likely terminal.

But rather than give up hope, Ryan sought support from online research, fellow cancer patients and survivors, and her medical team. When she brought up immunotherapy to her oncologist, he quickly agreed it was the best course of action. Ryan's cancer, like a majority of colon and pancreatic cancers, had been caused by a defect on the gene KRAS, which can result in a very aggressive cancer that is virtually "undruggable." According to the medical literature, the relatively smooth protein structure of the KRAS gene meant that designing inhibitors to bind to surface grooves and treat the cancer has been historically difficult. Through her support systems, Ryan discovered an experimental immunotherapy trial at the National Institutes of Health (NIH) in Bethesda, MD., and called them immediately to see if she was eligible. After months of trying to determine whether she was a suitable candidate for the experimental treatment, Ryan was finally accepted.

The treatment, known as tumor-infiltrating lymphocyte therapy, or TIL, is a testament to how far modern science has evolved. With this therapy, doctors remove a tumor and harvest special immune cells that are found naturally in the tumor. Doctors then grow the cells in a lab over the next several weeks with a protein that promotes rapid TIL growth – and once the cells number into the billions, they are infused back into the patient's body to fight the cancer. On April 1, 2015, Ryan had her tumor removed at the NIH. Two months later, she went inpatient for four weeks to have the team "wash out" her immune system with chemotherapy and infuse the cells – all 148 billion of them – back into her body.

Six weeks after the infusion, Ryan and Patrick went back for a follow-up appointment – and the news they got was stunning: Not only had no new tumors developed, but the six existing tumors in her lungs had shrunk significantly. Less than a year after her cell infusion, in April 2016, the doctors told Ryan news that would have been impossible just a decade earlier: Thanks to the cell infusion, Ryan was now considered NED – no evaluable disease. Her body was cancer-free.

Ryan is still NED today and continuing annual follow-up appointments at the NIH, experiencing things she never dreamed she'd be able to live to see, such as her children's high school and college graduations. She's also donating her blood and cells to the NIH to help them research other potential cancer treatments. "It was an honor to do so," Ryan said of her experience. "I'm just thrilled, and I hope my experience can help a lot more people."

Patrice Lee, PhD, VP of Pharmacology, Toxicology and Exploratory Development at Pfizer

Photo courtesy of Patrice Lee

Patrice Lee got into scientific research in an unconventional way – through the late ocean explorer Jacques Cousteau.

Lee never met Cousteau but her dreams of working with him one day led her to pursue a career in science. Initially, Lee completed an undergraduate degree in marine biology; eventually, her interests changed and she decided to get a dual doctoral degree in physiology and toxicology at Duke University. She now works at Pfizer's R&D site in Boulder, CO (formerly Array BioPharma), leading a group of scientists who determine the safety and efficacy of new oncology drugs.

"Scientists focused on drug discovery and development in the pharmaceutical industry are deeply committed to inventing new therapies to meet unmet needs," Lee says, describing her field of work. "We're driven to achieve new medicines and vaccines as quickly as possible without sacrificing safety."

Among the drugs Lee has helped develop during her career, including cancer therapies, she says around a dozen are currently in development, while nine have received FDA approval — an incredible accomplishment as many scientists spend their careers without seeing their drug make it to market. Lee's team is particularly interested in therapies for brain metastases — something that Lee says is a largely unmet need in cancer research, and something her team is working on from a variety of angles. "Now that we've had rapid success with mRNA vaccine technology, we hope to explore what the future holds when applying this technology to cancers," Lee says.

But while evaluating potential cancer therapies is a professional passion of Lee's, it's also a mission that's deeply personal. "I'm also a breast cancer survivor," she says. "So I've been on the other side of things and have participated in a clinical trial."

However, seeing how melanoma therapies that she helped develop have affected other real-life cancer patients, she says, has been a highlight of her career. "We had one therapy that was approved for patients with BRAF-mutant metastatic melanoma," Lee recalls. "Our team in Boulder was graced by a visit from a patient that had benefited from these drugs that we developed. It was a very special moment for the entire team."

None of these therapies would be available, Lee says without rigorous science behind it: "Facts come from good science. Facts will drive the development of new drugs, and that's what will help patients."

Chiuying "Cynthia" Kuk (they/them) MS, 34, third-year medical student at Michigan State University College of Human Medicine

Photo courtesy of Cynthia Kuk

Cynthia Kuk was just 10 years old when they had a conversation that would change their life forever.

"My mother, who worked as a translator for the government at the time, had been diagnosed with breast cancer, and after her chemotherapy treatments she would get really sick," Kuk, who uses they/them pronouns, recalls. "When I asked my dad why mom was puking so much, he said it was because of the medicine she was taking that would help her get better."

Kuk's response was immediate: "That's so stupid! Why would a medicine make you feel worse instead of better? When I'm older, I want to create medicine that won't make people sick like that."

Nine years later, Kuk traveled from their native Hong Kong to the United States to do exactly that. Kuk enrolled in a small, liberal arts college for their Bachelor's degree, and then four years later started a PhD program in cancer research. Although Kuk's mother was in remission from her cancer at the time, Kuk's goal was the same as it had been as a 10-year-old watching her suffer through chemotherapy: to design a better cancer treatment, and change the landscape of cancer research forever.

Since then, Kuk's mission has changed slightly.

"My mom's cancer relapsed in 2008, and she ended up passing away about five years after that," Kuk says. "After my mom died, I started having this sense of urgency. Cancer research is such that you work for twenty years, and at the end of it you might have a fancy medication that could help people, but I wanted to help people now." With their mother still at the forefront of their mind, Kuk decided to quit their PhD program and enter medical school.

Now, Kuk plans to pursue a career in emergency medicine – not only because they are drawn to the excitement of the emergency room, but because the ER is a place where the most marginalized people tend to seek care.

"I have a special interest in the LGBTQ+ population, as I identify as queer and nonbinary," says Kuk. "A lot of people in this community and other marginalized communities access care through the ER and also tend to avoid medical care since there is a history of mistreatment and judgement from healthcare workers. How you carry yourself as a doctor, your compassion, that can make a huge difference in someone's care."

In addition to making a difference in the lives of LGBTQ+ patients, Kuk wants to make a difference in the lives of patients with cancer as well, like their mother had.

"We've diagnosed patients in the Emergency Department with cancer before," Kuk says. "I can't make cancer good news but how you deliver bad news and the compassion you show could make a world of difference to that patient and their family."

During their training, Kuk advocates for patients by delivering compassionate and inclusive care, whether they happen to have cancer or not. In addition to emphasizing their patient's pronouns and chosen names, they ask for inclusive social and sexual histories as well as using gender neutral language. In doing this, they hope to make medicine as a whole more accessible for people who have been historically pushed aside.

"I'm just one person, and I can't force everyone to respect you, if you're marginalized," Kuk says. "But I do want to push for a culture where people appreciate others who are different from them."