I was recently in the airport. Make that the domestic terminal of the Lima airport on a Thursday morning.
In a country where domestic flights are often no more than an hour or an hour and a half in duration, air travel has exploded. The airport was packed! I mean standing room only. But what was most interesting about the situation, 90% of the travelers were Peruvian. This is so much different than what one would have experienced even just 5 years ago. Way back five years ago, bus travel was the norm. Now lower cost airline tickets, new budget class flights, a vibrant and expanding middle class, and an increased desire on the part of Peruvians to visit every part of the country they love and adore, has made it such that air travel is routine. This is a new era. And, we need to be responsive to this new era.
I really like the idiom, build the plane while you fly it. I often use the cliché to describe the projects and programs of HBI. Sometimes it feels like we are building a plane and flying it simultaneously. I understand that hard-core engineers who read such a statement might find extreme offense - wondering how we could possibly build something without fully understanding all the specifications, all the requirements, all the safety considerations needed to apply the design. But those of us that work in the realm of intersectionality – the intersection of theory and practice – it is not a far fetching scenario to fully appreciate this analogy.
We at HBI are all about working at the intersection of on-the-ground real world need and the mechanisms and means of building a model that can be sustained and scaled. This means we often find ourselves implementing projects and building models simultaneously. It means we seek to understand all the complexity, while balancing partnerships and listening attentively to the needs of the people are work is designed to directly support. It means we need to be adept at juggling a number of different concerns all at once.
Over the past few years the focus of our work has shifted. We’ve moved away from implementing projects that focus solely on the needs of populations living in severe poverty. And moved toward a focus on programs and models that can sustain accesses to evidence based health services and ensure pathways for populations to chart their own futures. Our focus is on collaborating with in-country partners, local change agents, subject matter experts, and policy makers to form programs that have the potential to refine and shift health practice. This is a big change from the early days of our work. And one that I am excited about. As well as one HBI is particularly well-positioned to take on.
We’re operating in a new era. Air travel has expanded to a larger segment of the population. Technology and the Internet have made information accessible to just about everyone. Communities are now sourcing locally grown solutions to deeply entrenched issues. Young people are growing up in a world that prides itself on transparency and opportunity. All of these changes require that we work in a different manner. It means we need to be more adaptive – and collaboratively build our projects while conceptualizing the models that will allow the projects to scale responsibly. It means we need to build the planes of our work while we simultaneously fly our planes toward newer levels of impact.
It’s an exciting time for our work. It's a new era for our work.
Thank you for your continued support.
I am back in Perú. I got here on Tuesday, but I've already hit the ground running.
This is a busy week for HBI. Over the past weekend, we had another training for our Emergency Medicine Together project with two guest subject matter experts from Northwell Health System in New York City joining our team. The project, a pilot to train a team of firefighter trainers in the city of Arequipa in pre-hospital emergency first response, is a model we are building with a broad group of partners. The goal is to develop a model for trainnig pre-hospital emergency responders who can then go out and train others. Like all of our projects, there are a number of moving parts - developing a curriculum with an advisory team of subject matter and content experts, standardizing the curriculum and training, accrediting the training, assuring fidelity to the evidence, supporting a cohort of local trainers and evaluating their efficacy, and developing a plan for scaling the model to other locations and other parterns. Not exactly a small project. Things are, however, moving along very nicely and this weekend provided more momentum.
In addition to the Emergency Response Together project, HBI has also partnered with Catholica University in Arequipa and Linfield College on a sabbatical project for Dr. Kim Kintz. Dr. Kintz is a professor in the School of Nursing at Linfield and is living in Perú for the next few months working with Catholica University on a number of projects in collaboration with HBI. This is a great step in building the kind of collaborative bridges for our partners in the U.S. and in Latin America. To assure the bridges span in both directions, we will be hosing 8 nursing students and 2 faculty from Catholica University in Portland for 2-weeks of immersion learning in October.
Also this past weekend, we met with a few of our partners for the Anemia Project. We are hoping to launch the main project, with 500 families enrolled, in July. I will be back in Perú the second week of May to host a partner from the U.K., Entia, who are coming to conduct a site visit and provide trainings for the staff involved in the Anemia Project.
In addition to the projects in Arequipa, I've joined Dr. Gehringer, HBI's Medical Director and NRP project lead, in the beautiful City of Cajamarca for the train-the-trainer project we have in collaboration with the Colegio de Obstetras del Peru. Joining us is Dr. Mary Boyer, a pediatrician and NRP trainer. We are woking with the Regional Colegio de Obstatras on a revisit for a team of trainers who are training their obstetric colleagues in the province. Every time I join Dr. Bob for one of these trainings, I am completely impressed with the work he is doing and the model we are developing.
All of this, and its only Friday. I am headed back to Lima on Sunday morning for a series of meetings and project prep. Dr. Bob and Dr. Mary will be headed to Trujillo in the north of Perú for another round of trainer reviews.
Stay tuned for more updates - and thanks for all of the support.
Editors note: Dr. Roberto Tarazona is the Lead Physician for the Ines Project in the City of Lima. The following is a story from a house visit he and the team conducted in March. The original story was written in Spanish, and although professionally translated, some of the initial prose may have been lost in translation. If you prefer the original Crónicas para crecer en Humanidad, please contact us (email@example.com) and we'll happily email a copy of the Spanish version. As always, thank you for your continued support.
It’s Sunday, north of Lima.
Sunday morning at 6 a.m., the sun begins to warm up the city, the neighbors are still sleeping, and I must get ready to go and visit three families and do a medical evaluation on three children.
Our task: prepare a medical record for each child that will help the task of the Health Ambassadors in the Ines Project. Our goal: contribute to better the health and living conditions of these children; for that, it is necessary that the parents themselves learn to navigate the local health system better. It is their right and at the same time, it is their responsibility. The city is still sleeping, the peace of a Sunday, after a hectic and festive Saturday. This is how it is in the city that I live: Callao, full of parties, especially Saturday nights. I must travel 30 km on public transport, transfer through three exchanges before I arrive where I need to be. With the HBI team, we have agreed to meet at the “El Norteno” gas station, in the district of Puente Piedra, north of Callao.
I must confess that I had forgotten, the many colors, the smells, the music and the vitality of the people that live in the “outskirts of greater Lima”. Like every Sunday, on the north side, from very early in the morning, there is an atmosphere of a great fare. Above all, in the formal and informal markets, there the locals offer different products, many of them brought from their original towns. I watch from the bus, people talking, laughing, having breakfast in the middle of the street and sharing the traditions of their hometown they had left behind when they arrived in Lima. Hard working people that live and maintain their homes with the sale of the day. I ask myself if these families that we will visit did not go to work just to wait for us. The truth is, that each visit to the families of the Ines Project opens in my life, a very special door that is very hard to close. The door I cross into a reality that is also mine, to somebody else’s reality; where I discover the riches, complexity and mystery of human existence.
A mother, a daughter, a family: an alliance for life.
We boarded another vehicle that gets us closer to the foothills of the Andes. Many houses built with cardboard, straw mats and pieces of wood everywhere. Houses being built, others already built, without sidewalks and roads, only dirt, dust and a great number of dogs completed the panorama. We walked up a very steep hill, dirt and stones on the existing path. The sun began to let us feel its heat. Finally, a pair of adolescents opened the “door of the house”, a lady, still very young, introduced us to “Milagritos” (Miracle). An adolescent girl with moderate cerebral palsy, who looked at us from a wheelchair. Two “rooms”: one bedroom and a kitchen-living room. All this for 5 people, including “Milagritos”. A stone wall completed the house. The father told us that it took him many years, to break the rock of the hill to be able to build their living quarters. We could still see the picks, shovels, hammer and gloves, with which the dedicated man, dug and conquered the hill for more living space.
The mother shared with us the story of “Milagritos” birth, the repertory stress, the transfer to a more complex hospital, the time the baby was without respiratory support. The suggestion of the doctor who cared for “Milagritos” was to let her die, because she would be a living “statue”… an insurmountable obstacle in their life of poverty.
The mother chose life for the still alive “Milagritos." Her two adolescent siblings care for her and love her very much. The father continues working all day as a street vendor, to support his family.
For this family, everything would be very different without “Milagritos;" without her, the word “love” would probably be without luster, and the strength that it has for them today. To believe against all odds, choose life, give life, care and protect the fragile and vulnerable, this is what I learned that Sunday.
Everything has a meaning and purpose in life; all we have to do is discover it.
A number of years ago, while working in an outreach clinic in an impoverished invasion area in the City of Lima, I was approached by a woman to help with her two-year-old child. The little girl, named Ines, has an incurable skin condition. She was suffering. We decided to help. Our initial support helped the family access medical care, specialty consultations, medication, and general services to better enable Ines to thrive. After a couple of years of the program we realized what we were doing was charity. We realized the moment we decided to stop sending money – any meaningful intentions we had to help the family and Ines would also stop. We decided then and there that charity was never enough. We had to help families gain access to the knowledge and skills they need to build their own lives. Their own futures.
There are hundreds of thousands of children around the world with complex medical, developmental, and disability challenges. In many parts of the developing and middle-income world, healthcare services are available to support medically fragile children, but sadly, many children are unable to access these services. As a consequence, the overall care of children living with a disability is substandard due to a host of logistical, financial, and cultural obstacles. This is precisely where the Ines Project intervenes. The goal of the Ines Project is to improve the health and wellbeing of medically fragile children and their families living in poverty through educating and training families to better access health services and more comprehensively self-advocate for their long-term needs.
HBI, through your generous support and contributions, started the Ines Project to help families not only manage their medical conditions, but also to thrive in spite of tremendously adverse environments.
The following is the story of a child enrolled in the Ines Project. A child with so much to teach all of us.
“David” is a lot like any four-year-old. He likes to laugh and play. He loves attention. He even has a mischievous nature about him. Unlike many other four-year olds, he doesn’t like to eat candy or chocolate. You see, David was born with a disorder called congenital hyperinsulinemia. Children who suffer from this rare disease need daily medication to inhibit the release of insulin from their pancreas. Diazoxide is such a drug. It prevents low levels of sugar in the blood stream and allows the body to better utilize energy. It prevents the dangerous consequences of not regulating blood sugar properly.
David’s mother has not been able to consistently access this life saving medication. Instead, she has had to resort to feeding David insanely large amounts of sugar every day to prevent the drops in his blood sugar. Hence the reason he doesn't like to eat candy or chocolate. For most of his young life, David has been forced to eat large amounts of sweets . . . just to survive.
David’s mother has been fighting for her son’s life since his birth. As of January 2016, the Ines Program has been helping her with this battle. A month’s supply of Diazoxide costs almost $1,000 (U.S. Dollars) – making it extremely cost prohibitive and an almost unfathomable amount of money for David and his family.
David’s mother is a great advocate. In spite of living in desperate poverty and managing the needs of her family all on her own, she has been David’s constant care giver and champion. However, accessing the medication he needs has been all but impossible. Out of desperation, David’s mother has resorted to going to the media and petitioning on national television for help. Over the past three years, the government has come up with only 5 vials of the medicine.
Working with a team of advocates, our team has knocked on a number of doors. We have called pharmaceutical companies, other non-profits, and even resorted to petitioning private providers for support. The medicine is just too costly to purchase. Recently, we’ve expanded our search and looked for options in other Latin American countries. But, everywhere we’ve looked, the prices are too high or the medication is unavailable.
Seeking any possible mechanism to help David, we focused our efforts to the United States and Europe. Teva Pharmaceuticals, the company that manufactures the medication, has a foundation for uninsured and indigent patients. The application is a simple one-page document. However, it is only available to patients who live in the United States. Teva graciously provided us with a list of organizations who have received medications from their subsidiary company in Perú. We reached out to every organization on the list. Another dead end.
Not to be dissuaded, we extended our outreach to include organizations in the U.S. that provide medications for short term medical mission projects and free or underserved care clinics. However, no one had the ability or budget to help.
Most recently, we got in touch with an organization that has given us some encouraging new leads and provided us with the contact information for a Peruvian physician attempting to find the Diazoxide for their patient. They have helped us fill out the necessary paperwork to obtain the medicine from an international NGO based in the U.S. that distributes orphaned and difficult to obtain medications.
Ever mindful to the need for a long-term supply of medication for David, we have continued our efforts to work with the Peruvian Ministry of Health to obtain Diazoxide.
This story of David – it’s not over. In fact, it is really just beginning. Now, for the first time since David and his family were enrolled in the Ines Project, we have a viable route to attaining the life-saving medication he will need. And, we are close to consolidating a pathway for the Peruvian government to make the medication available to David and other children living with Congential Hyperinsulinemia. Throughout the long, winding process of advocating with and for David - we’ve worked alongside his mother. She has been helping to guide our efforts and learn the subtle skills of health systems navigation and advocacy. Throughout the process, she has taught us a great deal about perseverance and compassion.
In many ways, David story should cause all of us to pause and ask a very important question: How do these efforts amount to meaningful, sustainable change in the life of a boy like David, living with an incurable medical condition that will require ongoing access to medication and care?
What we've learned from working with David and his mother, from working with so many of the children enrolled in the Ines Project is this - the work of caring for children living with a chronic medical condition and incurable disabilities is about supporting the families and helping them to gain the knowledge and skills they need to provide for their children over the long-term. Working with David and his mother has taught us the best way to build these skills is to invite families to work alongside our team in every aspect. David’s mother has learned to be the driver of her son’s care . . . and the architect of her their future. David’s mother has learned to build her own bridges. We think that is the best way to assure sustainable change.
In the nearly ten years the Ines Project has existed, we’ve been able to help well over 100 families gain the knowledge and skills they need to care for children living with a disability or medically complex condition. The total program costs a little more than $32,000 per year, that’s about $650 per family per year or $54 per family per month. Through your support, we’ve been able to build a model program that helps families attain the knowledge and master the skills they need to drive their own future. To build their own lives.
Thank you for building bridges for children like David. Thank you for supporting the work of HBI.
The HBI Blog is a rotating journal from our staff. Our Blog is a series of messages from the field, insights from our work, and lessons in service.