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.