When I was young, learning to identify colors was a simple yet gratifying task, especially when combined with a coloring book containing lines and shapes placed arbitrarily in the way of my “better” pictures. However, on the small islands of Pohnpei and Pingelap here in the Pacific, there is population for which this task of color identification is not so easily accomplished. Congenital achromatopsia (CA) is a condition in which a person is born without the ability to see color – true “black and white” vision. This is due to a lack of functional cone cells in the eye that normally provide color and high levels of visual acuity. As such, persons with CA also have blurry vision (20/200 or sometimes worse, 10x less than normal) and are very sensitive to light, causing them to squint in levels of light easily tolerated by those unafflicted by the disorder.

Unlike the prevalence of the anophthalmia/microphthalmia mentioned in a previous post, the etiology and history of CA in the area is well understood. During the turn of the 19th century, a large typhoon came through and swept over the island of Pingelap, killing many of the original inhabitants and leaving the survivors with very little resources or food. Of these few survivors was a man of royal blood, who carried with him the precursor gene for CA. When the island was repopulated, this gene became much more common in the population, resulting in the high prevalence and Pingelap being known as “the island of the colorblind.” However this prevalence is decreasing as expected now that the population is less isolated; major migrations to the island of Pohnpei have taken place and a much larger gene pool is now available (the gene is recessive).

Roddy Robert is a coordinator for special education on Pohnpei and once himself a teacher for children with visual impairments. He carries with him a friendly personality, big laugh, lots of stories, and one pair of sunglasses – as well as the same gene for CA many of his students also have. This allows him to fully understand just what the kids are going through when he teaches them – he can see the world through their eyes better than anyone else can, and thus makes a truly exceptional mentor and guide. This advantage in teaching others with the disorder isn’t the only positive spin on having CA. To compensate for the decreased vision, the body tends to increase the capabilities of the other senses; thus Roddy and his students alike sport a very keen sensation to touch and excellent hearing. In the past persons with the disorder have even been used in warfare to spot enemy camouflage – their eyes are far superior at distinguishing between shades than the typical individual.

During our time on Pohnpei, we had the pleasure of meeting Roddy and traveling with him to Mand, a village which has become the main site of immigration for people from Pingelap and is home to many people with CA. We visited the homes of several of his former students, including a young boy we grew particularly fond of named Junior. Despite the language barrier (kids on Pohnpei learn the local language first and start English as soon as they enter school), Junior was able to communicate with us effectively in English for much of the conversation; Roddy only translated periodically as needed. He has a very outgoing personality and was as full of questions for us as we were for him – a sign of the quality education he’s received and a testament to the expertise of his teachers. 

Yet there was an obvious kinship – not just familial, but perceptual, cognitive – among the achromatopes we met on Pingelap and Pohnpei. There was an immediate understanding and sharing between them, a commonality of language… 

– Oliver Sacks, The Island of the Colorblind

We arrived back in Chuuk a few days ago and have had some extra time to look back and reflect on some of the things we have experienced. If you’ve been reading our blog it is already apparent that the resources on these islands are very thin. But here are a few stories to paint a clearer picture in case you’ve missed the boat:

Story #1 The FSM is endemic with both tuberculosis (TB) and Hansen’s Disease (aka leprosy). On Pohnpei, public health teams manage tuberculosis through DOT (directly observed treatment) teams, as we have mentioned in previous posts. These teams travel to patients’ homes every morning to bring the daily dose of medicine and ensure that the medication is taken properly. This prevents patient non-compliance which in turn prevents reactivation of latent TB and the development of resistant strains, not to mention the prevention of spread to others. This method has worked great; rates of TB have plummeted on the island and not a single case of multi-drug resistant TB has been seen in recent years. After traveling with one of these TB-DOT teams, we decided to travel with one of the leprosy-DOT teams the next day. What we found here is that for leprosy, the directly observed treatment team did not directly observe the treatment- makes sense, right? In this case the DOT team simply drops off a week’s supply of medication and only returns to the patient’s home when the patient runs out of medication. They never actually enforce the treatment. We were puzzled too, so when we asked why the DOT team doesn’t travel every day to ensure leprosy treatment as they do for TB, we were told that there is no funding for DOT for leprosy. They only have funding for DOT for TB. Granted TB and leprosy are different diseases and therefore are treated differently, but the principles are the same; by not enforcing a treatment you risk patient non-compliance, failed treatment, and rapid spread of the disease. This probably explains why locals tell us that leprosy has gotten much worse on the islands in recent years. Public health leaders are forced to choose which disease to target with full resources, while letting others flourish relatively unscathed. Where the public health efforts pay dividends in the treatment and prevention of TB, the same system completely breaks down in the face of leprosy because of lack of funding.

Story #2 While on Pohnpei we had to treat ourselves a few times by going to The Village for dinner. The Village is a very rustic but very nice hotel on the island with a restaurant and bar situated high up on a mountain ridge, overlooking the lagoon. The view is incredible (and it’s actually pictured in an earlier post). The menu is priced fairly but one item, the rack of lamb (serves 2), was priced at $70. Ridiculously priced, yes, but to be fair not unheard of back in the States. Obviously we didn’t order this item (we are poor medical students after all) but we took notice in the price, especially after we observed some surgeries the next morning at the hospital. The first surgery we watched was a laparoscopic cholecystectomy. We were impressed that there was even the capability for laparoscopic surgeries. The equipment may have stopped working a few times, but overall the surgery went very smoothly. We chatted with the surgeon as he closed up the incision and it was then that the cost of such a surgery was revealed… $65!!! We are too early in our training to understand all of the insurance payment and reimbursement rate mumbo-jumbo the surgeons used to justify the ludicrous cost of the surgery, but the fact of the matter remains: surgery to remove one’s gallbladder in Pohnpei is valued at the price a well-off tourist would pay for dinner at a nice restaurant. I don’t know what else to say on this one…

Waiter: "Are we ready to order?"

Restaurant patron #1: “Indubitably. I’ll have the ‘rack of lamb’ priced at $70, please.”

Waiter: “Ah, yes. Delightful. And for you sir?”

Restaurant patron #2: “I’d fancy the $65 laparoscopic cholecystectomy, if you don’t mind.”

Waiter: “Of course. Right away.”

Story #3 Dr. Dorina is a “medical officer” in Chuuk. It’s not what we would call a doctor in the States, but it’s close and it’s the best they have. She isn’t young per se (she is probably in her early-40s) but it turns out she is one of the youngest doctors in all of Chuuk. That’s because almost all of the doctors in Chuuk were trained through a temporary, US grant funded program to train more medical officers for the local islands. The grant was enough to train 10 classes of medical officers, with the last class graduating in 1997. This was Dr. Dorina’s class. Since 1997, there have been essentially no new doctors in Chuuk (unless you count the few non-English and non-Chuukese speaking Chinese doctors; see earlier post). When the health care situation in Chuuk becomes exceptionally dire again, an order for more doctors will be submitted to the United States, and the request will be met with either a grant for another training program, or a rejection. Considering the Compact of Free Association between the United States and the FSM expires in 2023, we can only guess as to what will happen.

During one of our home visits with the crew from public health that delivers medicine to the TB and leprosy patients on the island (they’re called the DOT crew – Directly Observed Treatment, it helps prevent resistant strains of bacteria and non-compliance), we came to the home of a woman who was recently diagnosed with TB.  We sat down and spoke with her for awhile, she was pleasant but very tired – it was the first time I had actually heard someone cough knowing it was from tuberculosis, which is virtually non-existent in the States.  Her husband was there by her side throughout the conversation, occasionally brushing her long dark hair behind her head with a look of love and concern as she lay there, exhausted from the disease.  He left only once – and came back with a huge smile across his face and arms outstretched holding a fresh coconut.  Drinking a coconut fresh from the palm tree was on the “must do” list for Mike and I on this trip, so the man’s smile became contagious as we pondered how to go about drinking from the hole carved in the top of our new drinks.  After thoroughly analyzing every aspect of the coconut situation as all medical nerds must do before any new task can be undertaken, we managed to spill probably only slightly more than we drank.  Delicious.  

 

The greatest mistake in the treatment of disease is that there are doctors for the body and doctors for the mind, although the two cannot be separated. - Plato

Dr. Rally Jim directs the public health operations on Pohnpei- a monumental task considering the island is dealing with a chronic disease epidemic (obesity, diabetes, hypertension) in addition to a high prevalence of communicable diseases that are virtually eliminated from developed nations (i.e. tuberculosis, Hansen’s disease, and many more). While communicable disease control is constantly improving on the island, the chronic diseases have become the silent killer. Managing these chronic diseases is not easy because there is no single treatment; they are caused largely by lifestyle choices and therefore require massive behavioral modifications which is never a simple undertaking (ask anyone that has tried a weight loss diet). Dr. Jim has a thorough understanding of the situation and some great ideas that may help Micronesia fight this epidemic. He used this analogy to describe the role his office can play in this fight:

“Health care on this island used to consist of a person falling from a cliff with an ambulance waiting for them at the bottom. Today we have put up fences to prevent people from falling from the cliff in the first place. Going forward however, we need also to push these people back, far from the edge of the cliff.”

Dr. Jim’s ideas of preventative medicine are nothing new, but the way in which he plans to implement this practice is, in what I have seen, more creative than anything we have in the States. Often people are not motivated to make significant changes to their lifestyle by the threat of bad health alone. It take something more personal, maybe even sacred, to elicit this change. Having lived on the island his entire life, Dr. Jim understands what makes the local people tick. He has already begun to use traditional healing methods (massage therapy, herbal medicine, etc.) in conjunction with modern medicine. The traditional methods provide the patients with a source of motivation- they believe in it and are passionate about it. The modern medicine provides the scientifically proven therapeutic technique. Together, the result is an effective treatment that also preserves the local culture, all with a personal touch. Something similar would clearly be much more difficult to implement in the United States because of a very heterogeneous population. But by calling on local leaders and health care professionals that live in, care about, and understand the people and places in which they practice, it is not impossible.

A personal excursion led us to the campus of a private school in Pohnpei. After meeting many of the faculty/staff of the school we came across Mona. She has committed herself to making the transition to a healthy lifestyle as easy as possible for the people of Pohnpei. As a lifelong resident of the island, she understands the importance of self-sufficiency and local resources. She invited us to stay for a dinner consisting of fresh caught fish, rice, and the native staple taro. No spam, no grease, no processing, and totally self-sustained- a stark contrast from Chuuk. She is the founder of a non-governmental organization whose goal is to promote the awareness and consumption of local foods. There are many more like her on the island.

With the efforts and ideas of public health leaders like Dr. Jim and the drive of passionate citizens who care about their own people and land, like Mona, Pohnpei appears set to battle the obesity, diabetes and hypertension epidemic that is threatening all of Micronesia.

         Donna took the island hopper back to home to the States today. We’ve lost a valuable travel companion and familiar face from our crew. This will be good for us though. It forces us out of our comfort zone and challenges us to make our own connections and objectives. Hope all goes well. Thanks for everything Donna. We could not be here without your help.

Everything has its wonders, even darkness and silence, and I learn whatever state I am in, therin to be content.

–Helen Keller 

Anophthalmia and Microphthalmia (A&M) are similar developmental disorders in which a person is born without an eye/eyes or an eye that is too small for normal function (respectively).  For the medical nerds out there (like us), the condition arises from a failure of the optic vesicle to form or differentiate appropriately in the embryo.  The etiology of the disorders is currently unknown.  A genetic component is possible, but the inheritance patterns do not appear to follow simple Mendelian genetics, and so it could be a gene that predisposes certain individuals to have an increased risk for developing the disorder.  However, it is also plausible that an environmental factor such as diet or other sources like a teratogenic infection could be causing the problem, or a combination of the two.  

       A&M are very rare disorders throughout the world, but have an unusually odd prevalence here in Micronesia with a rate of incidence many times higher than the average.   It is our hope that with some basic data collection, awareness of this prevalence can be raised, and enough interest can be generated in the scientific community to bring a team of researchers with the proper funding out here to investigate the issue.
       This morning we met a young boy named Prince who will be going into 2^nd grade next Fall.  He was born with bilateral anophthalmia and thus unable to see us as we walked up to greet him with his family.  He was shy at first, like most kids his age, stepping slowly behind his grandfather to hide as we introduced ourselves.  Unlike traditional family and parenting practices in the U.S., it is very normal for the maternal grandparents to play a major role in raising children in Pohnpei.  Prince’s family was a perfect example of this, though the grandparents’ role in this case became a necessity when his mother passed away several years ago – truly a heart-wrenching story.  

Meeting Prince with his grandfather and Donna

  After talking with Prince for a while about his favorite things to eat (donuts and bread) and what he wants to be when he grows up (a lawyer), it became apparent that he had certain behaviors that other kids did not.  He seemed to be constantly interacting with himself, from licking his knees to constantly tapping his feet on the floor.  Donna would later inform us that this pattern of behavior is referred to as “self-stimulation,” and usually occurs when a child who is blind does not receive enough outside stimulation from their environment (i.e. not enough objects to play with and manipulate).  This isn’t necessarily the fault of anyone in particular, but simply identifies the need to facilitate more involvement with his surroundings; everyone must do their part.  Indeed it seems we not only require the basic things like food and water for our development, but also enough interaction with the environment to satisfy the mind’s hunger to learn and understand the world around us.  The people on the island have a saying that illustrates this idea quite nicely – “it takes a village to raise a child.”

       The idea of everyone doing their part is not wasted on Prince’s grandfather, who recognizes the special treatment his grandson sometimes receives – “I feel like he’s been spoiled a bit.  I really just want him to be treated like the other kids.”  He would continue on to tell us stories of kids “helping” Prince by getting his food for him and bringing it to him at the table during lunch hour at school, or times when he has noticed Prince not being disciplined like the other children because the teacher is being “nice” to him due to his disability.  Though these people may feel like they’re helping, in the long run they are actually hurting Prince’s development and potential.  This becomes a perfect example of why proper education is especially important in the lives of visually impaired children like Prince. 

We arrived in Pohnpei yesterday. This is an unbelievably beautiful place - one of the rainiest on Earth too. It needs to be to support all of this greenery. Turns out we are sharing our hotel room with a few other guests: a couple of geckos and “La Cucaracha”. La Cucaracha is very shy; he does not visit us often. In fact he only comes out while we are asleep. Oh well, we know he loves us.

On this island, people have an unhealthy acceptance of death. - Bill Stinnet, Chuuk, FSM
 

As a retired FBI agent who has made his home on Chuuk, Bill has seen his fair share of difficult situations. But when death becomes so comfortable, so unquestioned, so easy, even he takes notice. People die and then they are buried; there is no autopsy, no investigation, and certainly no lawsuits. So why has death become so commonplace and so readily accepted on the island? As discussed earlier, the advent of Western influences has brought many conveniences to the area. However, one such Western

Aisle in a Chuuk grocery store

“convenience” that has really taken hold on the island is the canned meat Spam. The people apparently love the stuff. At 174 calories, 15 grams of fat (23% daily value) and 767 mg of sodium (32% daily value) per serving, and people are certainly not limiting themselves to one serving, it is no wonder that the rates of obesity, hypertension, and diabetes have exploded on the island. Not only is this island state still battling many communicable diseases virtually non-existent in the United States, but on top of it they must deal with the burden, cost and mortality associated with some of the deadliest chronic diseases on Earth. 

Needless to say, the hospital in Chuuk is dangerously under staffed and under resourced. The power goes out every few hours in the hospital. We can only imagine the anxiety associated with performing (or receiving) surgery under such circumstances. Officials try to compensate for the shortage of providers by hiring physicians from China on short term contracts, but these doctors speak virtually no English or Chuukese- the two languages used on the island. Having just completed our first year of medical school, one of the things we learned early on was that the patient history and physical examination are the two most valuable skills and sources of data a doctor can have, more so than any fancy test or imaging technique. If a doctor cannot adequately communicate with a patient, how can they adequately treat the patient? When people tell Bill about their experiences in Chuuk’s hospital, his response is “you went to that hospital- and you survived?”. Drugs are dispensed from a small shop in town and placed into unmarked plastic bags. People often have no idea where the drugs originally came from, how old they are, or even if they received the correct medication.

In matters of truth and justice, there is no difference between large and small problems, for issues concerning the treatment of people are all the same. - Albert Einstein

After hours (more like days) of travel, layovers in Houston and Tokyo, with a brief stay in Guam, we arrived on Chuuk. Chuuk is one of the four island states of the FSM (Federated States of Micronesia) and is arguably the “roughest” and most corrupt of the states. One story we’ve heard several times has that international assistance funds that were intended to be used to provide electricity to the people of Chuuk were stolen by a local official and used to buy a condo in Hawaii. This left many areas of Chuuk without power for over 10 months. Locals tell us that for a brief period the FSM tried to figure out a way to remove Chuuk from the rest of the Federation because of its horrible reputation. Chuuk ultimately remains a state but its struggles are as great as ever.

The main road through Chuuk

The Chuukese traditionally used the land and natural resources to provide for themselves and their families, but with this sustenance based culture pitted against the recent advent of Western influences and economy, an interesting situation is created. As formal jobs became available, they were quickly filled leaving most families to continue their traditional lifestyles. However, as Western values infiltrated the area more and more, many abandoned this traditional lifestyle and sought temporary and low paying jobs. Eventually almost no Chuukese people were living as they used to, but still no new good or permanent jobs were available. One hiccup in the local economy later and the result is and unemployment rate of around 80%, poor infrastructure and sanitation, and coincidentally poor overall health. All of this since the introduction of Western conveniences to the area. We are only on Chuuk for two days initially, but will return later for a nine day stint. We will know much more about this occurrence then.

In addition to economic troubles, Chuuk is also ridden with social inequalities. During our first day on Chuuk we observed Kathy Mori, a childhood health screening specialist, as she saw patients. One young mother brought her child in for a hearing assessment. When the appointment was over, the woman stood to leave but did not advance towards the door. Chuuk is a male dominated society to such an extent that women (especially young women) duck or even "walk" on their knees when moving past men as a sign of respect and submission - a symbol of the social hierarchy on the island. Tyler was sitting between the woman and the door, so even by ducking the woman would not be able to be lower than Tyler. Tyler recognized what was going on so he stood, allowing the woman to duck past him and out the door. An uncomfortable feeling for us.

Each man has his own vocation; his talent is his call. There is one direction in which all space is open to him.
- Ralph Waldo Emerson

Tyler Gress

Michael Clark and Tyler Gress here- two medical students at the University of Minnesota - Duluth School of Medicine. We are both driven by a desire to help provide for the basic needs of people who aren’t able to provide for themselves, and desire to do so in a way that challenges us intellectually, emotionally and spiritually. There are many ways to provide for such needs, but none are as deeply personal and at times emotionally exhausting as being with someone through their journey of illness and health, life and death. Through a career in medicine, we hope to fulfill our own vocation: using our passions and skills in a way to positively affect those in need.

Michael Clark

In order to provide the best overall care for a patient, understanding the science of medicine is simply not enough. A physician must also master the art of medicine. Doing so involves an awareness of cultural sensitivities and constructing a model of care that does not jive with the patient’s values and wishes. To help future physicians realize how to do so, the University of Minnesota- Duluth School of Medicine offers an elective course called MEDS (Medical Education through Diversity and Service). Through MEDS, we will spend time immersed in a foreign culture (in this case, Chuuk and Pohnpei, Federated States of Micronesia) to learn how to do just that- understand the cultural and social factors that motivate health related decisions in a culture vastly different than our own. In many cultures, “health” is not so easily defined as a state of physical and mental wellness; religion, tradition, myth and many more factors often contribute to health and cannot be thought of as separate entities. In an increasingly globalized world, we can then apply this understanding to our own future practice in order to provide the highest possible level of care for our patients.

We are joined on this trip by Donna McNear, a visual impairment specialist who has been visiting the region for over a decade. She has been working to improve the learning conditions of children affected by a variety of visual impairments, namely anophthalmia, microphthalmia, and achromatopsia. She has offered to travel with us for the first part of this trip to introduce us to the people she has met and friends she has made throughout her work here. We are very grateful for all of her help.

It is our hope that this blog will help us think through what we are seeing, learning, and experiencing while allowing you to join us on this journey and maybe even learn along with us. We apologize ahead of time for our often convoluted thought process, but hope you will understand what we are trying to say. Feel free to ask questions, give advice, or just drop us a line. See you in Micronesia!