Background

The Republic of Nicaragua is the poorest nation in Central America and has struggled in recent decades to provide adequate healthcare to its population due to political turmoil and natural disasters [1,2]. Though the Ministry of Health provides the majority of health care, recently the government has enacted legislation to decentralize the health care delivery system to more efficiently provide medical consultation services to its people [2,3]. The nation also spends more than any other Central American nation on healthcare at 8.3% of its GDP [1,4]. Despite this generous allocation and significant changes in the medical infrastructure, the rural and urban populations still suffer from a lack of accessibility to medical care [2,5]. Health posts are not uniformly distributed throughout the nation, medication costs are exorbitant, and there are only 3.7 physicians per 10,000 people, compared to the Central American average of 22.5 [2,6]. Furthermore, because only 9% of Nicaraguans have any kind of health insurance, the out-of-pocket health care delivery model poses a significant barrier to medical care by stratifying accessibility according to socioeconomic status [2]. Medications comprise the main out-of-pocket expenditure on health, especially among the impoverished [5]. In addition to lack of accessibility, healthcare is limited amongst rural populations due to strong cultural beliefs in herbal and other non-Western medicine [7]. Collectively, these factors make it inconvenient and financially difficult for patients to seek medical attention, and individuals with treatable disorders unnecessarily suffer.

Introduction

While accompanying Nicaraguan physician Dr. Angelica Torrentes on a home visit as part of a volunteer trip to provide free medical care to Nicaraguan villagers, we met a 23 year-old patient named Felix who complained of progressive vision loss.Unable to work or afford proper medical treatment, he lived with his family in a dirt-covered shack without doors or flooring. Felix was very reserved, with slumped shoulders as he sat listening to the unfamiliar people in his home. He made no attempt to establish eye contact when he spoke and his gaze remained on the ground, revealing his low self-esteem. Felix’s chief complaint was visual impairment that had manifested four years earlier when he was maliciously struck in the head with a cue ball during a robbery. He informed us that he had lost consciousness, received minimal care at a local hospital, and was shortly thereafter discharged. His quality of life greatly suffered both because of his disease and socioeconomic status. His family only earned $100 per month, yet half of this was used to pay for Felix’s monthly appointments with primary care providers. Upon hearing about his predicament, we were emotionally shaken. His youth, coupled with the severity of his medical and financialproblems, made his condition heartbreaking. We were so moved by his plight that we vowed to utilize our relative privilege as Americans to do everything in our power to assist our patient.

Approach

To combat health care accessibility problems affecting Felix and his family, we formed an international collaboration with GMT leadership and physicians from Nicaragua and the United States calledFunds for Felix. Our objective was to induce tangible, positive change in Felix’s life by raising enough money to transport him to the United States for an operation to salvage his vision. We applied a grassroots philosophy to our fundraising efforts by giving presentations to undergraduate students at UCLA, collaborating with GMT leadership to organize fundraisers with restaurants on the UCLA campus and in Los Angeles, and alerting family and friends to raise awareness of Felix’s condition. To generate more funds, we also contacted a reporter from the UCLA student newspaper to write a special feature article chronicling Felix’s story and our fight to save him from becoming blind. We took advantage of social networking websites to raise awareness amongst our peers and created an email account so interested donors could conveniently contactFunds for Felix. In total, we raised approximately $1,200.

From the home visit we learned very little about the etiology of Felix’s visual impairment. However, because he informed us that he started losing his vision after he suffered head trauma during the robbery, we were concerned that neurological damage may be a significant contributing factor. Thus, we decided to provide Felix with an MRI scan and an ocular ultrasound so that we could potentially detect abnormalities in his brain, eyes, or retinas that may have caused and exacerbated his visual impairment.Funds for Felixdonated approximately $600 for these scans and also funded Felix’s transportation to and from Managua and Matagalpa. Dr. Torrentes provided extensive assistance by helping Felix travel to various clinics in Managua to obtain these tests. She also transported the scans to Los Angeles toFunds for Felixpersonnel. We took advantage of our close proximity to the UCLA Health System and showed the images to UCLA Neuro-Ophthalmologists and Neuro-Radiologists to determine if surgical intervention could help Felix.

Outcome

During our visit to his home, Felix explained that he started to lose vision as a direct result of the head trauma he suffered during a robbery four years ago. We hypothesized that the MRI scan might reveal structural damage to the occipital lobe or optic nerves, while the ocular ultrasound would reveal potential problems with his retinas.After reading the scans, Dr. Torrentes informed us thatFelix’s brain did not have any anatomical abnormalities, but surprisingly he had undergone some ophthalmological intervention before we made the home visit. However, this treatment was not effective.When Dr. Torrentes confronted Felix about the discrepancy, he admitted that the etiological agent of his vision loss was a pre-existing unknown genetic condition, not brain damage, that clinically manifested as retinal detachment. Members of Funds for Felix and Dr. Torrentes were taken aback by this revelation. We had shared Felix’s story with GMT members, friends, family, and the UCLA campus only to find out that we had been misled and had potentially misdirected our funds. We had idealistically placed our entire trust in the sacred patient-physician relationship, but after this incident we were forced to reevaluate how we would approach the situation.

Despite this unexpected development, we reasoned Felix still desperately required medical attention because he was suffering from a debilitating disease at a strikingly young age. Furthermore, his inability to work was a severe financial difficulty for his family. After questioning Felix about why he felt compelled to not entirely reveal his medical history, Dr. Torrentes informed us he was concerned GMT volunteers would be less inclined to help him if we discovered he was suffering from a chronic condition that progressively worsened with time. We attempted to be empathic; we witnessed firsthand the degree to which his family was struggling to make ends meet. We also reasoned that Felix’s discomfort about the unfamiliarity of the home visit might have inhibited him from being fully straightforward about his medical history. Despite the transient dishonesty, we were still passionately dedicated to providing Felix with the health care he desperately required and deserved.

Fortunately, in early stages, retinal detachment is a treatable disorder that can be cured with proper surgical expertise. Thus we reasoned that we could help salvage what was left of his vision through further collaboration. We consulted UCLA Neuro-Ophthalmologists and Neuro-Radiologists to assess if surgical intervention was an effective method to potentially restore Felix’s vision. Each physician generously donated time out of his or her day to help us, and for this we were extremely grateful. We were informed that some of the most common surgical interventions for retinal detachment were using a scleral buckle or performing a Vitrectomy. Upon looking at the scans, they informed us that several years earlier a scleral buckle was placed around one of his eyes to treat his severe case of myopia, but this had clearly not helped his vision. Despite the supportive praise we received for our project, the general consensus amongst the specialists wasthat surgery would be futile because Felix had a chronic case of retinal detachment.Unfortunately, like most cases of blindness, this would have been preventable if a skilled specialist had seen Felix earlier.He was a victim of the circuitous route to health care faced by countless rural villagers not only in Nicaragua, but also in developing countries worldwide.

Though disappointed, we explored unique routes by which we could induce positive change in our patient’s life. After funding the MRI scans, ocular ultrasounds, and enabling Felix to make biweekly trips to his primary care provider,Funds for Felixhad roughly $600 remaining. Our stated goal since the beginning of our fundraising efforts was to induce tangible, positive change in Felix’s life, and despite these unexpected circumstances we were still intensely committed to helping him. Dr. Torrentes proposed that Braille school could potentially increase Felix’s self-esteem by making him feel like a productive, contributing member of society. Additionally, if he learned enough he could potentially find a job and help alleviate his family’s financial struggles. With the passionate dedication of Dr. Torrentes, Dr. Karen Zapata, and Dr. Wilbur Johnson, we are proud that Felix began taking classes at his local Braille school in the Matagalpa region of Nicaragua on March 22, 2012. Additionally, we provide Felix and his family $50 per month to help pay for his routine primary care appointments while he is in school.

Discussion

We did our best to clearly explain to Felix and his family the importance of obtaining an accurate medical history during our home visit. At the time, we thought we had appropriately listened to their questions and taken sufficient measures to ensure the family felt comfortable communicating with us. However, for some reason Felix decided not to fully disclose his medical past. Perhaps we could have reiterated the severity of his condition and emphasized that we needed his entire medical history to provide him with the best opportunity to improve his health and life. After this experience, we learned that humans are too complex, too nuanced for us to have naively assumed patients will always reveal their secrets to strangers.

When we initially discovered that Felix was not honest with us, we were stunned and even felt deceived that he would intentionally provide us with false information. We had shared his story with GMT members, friends, family, and the entire UCLA campus community, defining our mission according to the information he gave us. Despite these feelings of betrayal, we felt inexplicably tied to Felix, his family, and his deteriorating vision. Most importantly, we felt that it was our duty to help him. If we did not provide aid, then who would? He was still losing his vision at an alarming rate and his family’s financial struggles would persist regardless of the causative agent of his condition. This line of reasoning ultimately convinced us that Felix still deserved our passionate dedication.

Hypothetically, even if we had known the true nature of his visual deterioration, we still would have exerted as much effort to help Felix. Regardless of how he began losing his vision, his precarious medical condition and poor living circumstances would have remained roughly the same. Though we wasted precious time attempting to determine the etiology of his vision loss, we do not believe his transient dishonesty caused any financial loss. Even if we knew that he was suffering from a pre-existing genetic condition, we were still concerned that he could have suffered neurological damage from the head trauma while being robbed. Thus, we believe we would have ordered an MRI and an ocular ultrasound regardless of his medical history.

Funds for Felix altered our perception of what it means to be a care provider, and our compassion and respect for humanity has matured. We learned that there are multifaceted ways in which health care professionals can positively impact patients. In addition to direct medical assistance, we learned that psychosocial factors are ubiquitous in disease, and that addressing these issues is as integral to successful patient care as diagnosis and treatment. In providing help for a Nicaraguan villager, not only did we learn about a different culture, but we also learned about ourselves. We probed and redefined our fundamental reasons for pursuing a medical career, and we learned that health care providers must exhibit the heart and mind necessary to provide compassionate, competent care. Though intellectual prowess is paramount to a successful practice, physicians who possess the heart for medicine truly care about their patients and fight for their chance to have a better life. This cannot be taught. Rather, it must be awakened. Funds for Felix allowed us to discover and cultivate our passion for serving humanity.

Felix’s transient dishonesty also altered our understanding of who we are as global health volunteers in a developing country, helping us comprehend the severe medical need pervasive in these locations. As international volunteers, the local population ideally views us as “partners,” but in our experience this has not been the case. We are instead often portrayed as “saviors,” and occasionally our patients believe that we may provide better care because we are from the United States. However, there is a fine line between providing help and building reliance on foreign entities, and we were careful to respect these boundaries. Our goal with Funds for Felix was sustainability: elucidating how we could best help Felix and his family live autonomously and comfortably. To accomplish this, we decided to provide Felix and his family $50 per month to help pay for his routine primary care appointments while he is in Braille school. However, over time we will stop providing financial support. We have repeatedly stressed to Felix that our goal was to help him become a self-sufficient individual so he can build a better future for himself. We hope that, with the ability to read and write Felix will be able to find a job to help alleviate his family’s financial burden.

Our collaboration with GMT physicians also set an example for who we want to be as care providers. The altruism displayed by Dr. Torrentes was particularly inspiring, and her dedication to Felix set an example for how GMT volunteers should treat patients in their future medical careers. Her compassion transcended clinical responsibility; she embodied the concept of patient-centered care by paying out-of-pocket for his myriad medications and even allowing Felix to reside in her home for extended periods of time. Her idealistic belief in a better life for Felix inspired UCLA GMT volunteers to redouble fundraising efforts. Through the involvement of Nicaraguan physicians and translators, American doctors, UCLA undergraduate GMT volunteers and student leaders, and dozens of generous donors, we successfully formed a cohesive collaboration that enabled Felix to become emotionally rejuvenated and find purpose in life.

One year later, several GMT volunteers were fortunate to see the dramatic transformation Felix had undergone. During the home visit, he barely lifted himself out his chair to shyly greet us, but this time, he confidently walked into a room full of 45 physicians and foreign undergraduates. He gripped a volunteer’s forearm tightly, in sharp contrast to 2010 when he could hardly gather enough energy for a handshake. He expressed sincere gratitude to Funds for Felix and GMT for giving him hope that he could live a satisfying and productive life despite the innumerable challenges he faced. It was inspiring to see Felix speak as he informed us that after his accident he felt helpless because he was disillusioned with the inability to find meaning in his life. During these moments of existential crisis, Felix found strength in his unwavering religious faith and never gave up hope that someone or something would assist him medically and financially. Although we were disappointed that surgery was not a viable option to treat his deteriorating vision, the support of strangers, the widespread distribution of his story, the hospitality of Dr. Torrentes, and the lessened financial burden on his family gave Felix a different vision and a new hope. He realized his life was not over. He was no longer resigned to an inhibited and isolated existence; now he looked forward to becoming a more productive individual by attending Braille school.

We are pleased that our efforts to improve Felix’s life have inspired other GMT volunteers to similarly “adopt a patient” in dire need. Dr. Wilbur Johnson, founder and director of GMT, is fond of saying, “You may be only one person to the world, but you may be the world to one person.” Felix informed us that we were “the answer to [his] prayers,” and that he would always remember what we did for him and his family. Making such a meaningful impact in the life of even one person is extremely gratifying, and we are pleased that other motivated groups of students fighting to reduce medical inequalities have contacted us for help in determining how to similarly induce positive change in the lives of their patients. We hope that the information provided in this paper will serve as a foundation for analogous efforts, helping guide fundraising endeavors and medical care.

When one loses vision, particularly early in life, one’s sense of place in the world is fundamentally altered. Vision is integral to our very being: It dictates how we see ourselves, how we perceive others to see us, and how we interact with our physical world. This experience provided us with a strong emotional stimulus vividly demonstrating that medicine is a vehicle through which motivated individuals can positively impact others in their most dire moments of vulnerability. Medicine inherently requires collaboration to transcend social barriers and ultimately benefit fellow human beings. Through the passionate dedication of a relatively small number of committed physicians and volunteers, we were able to profoundly improve a patient’s self-esteem and give him hope that, despite his disability, he can become a productive member of his community. Sadly, countless other patients suffer from treatable diseases in developing countries, unable to improve their health because they lack accessibility to medical treatment. We at GMT envision a better future in which international meta-collaborations are created to maximally benefit patients through improving health care distribution.