Wuqu' Kawoq

After Tropical Storm Agatha passed in May of 2010, Wuqu’ Kawoq began to work in many communities in need of emergency aid.  During this time we were made aware of a number of these communities in need of emergency healthcare through another nonprofit organization called Mil Milagros, which in Spanish means 1000 Miracles.  Mil Milagros was founded in 2007 with their major focus on education and nutrition for children in malnourished Mayan communities.

Wuqu’ Kawoq is thrilled to be working with Mil Milagros to help provide holistic care for the children and families in these communities.  In one community, Chichimuch, we have begun a nutrition supplement program to prevent and treat stunting in children under 5 years of age.  In Chichimuch we are also able to provide care for patients of all ages in the community.  Our partnership with Mil Milagros has been extremely successful and we recently received photos of a mural done by children at the school in Chichimuch.  The mural even includes a WK physician!

We look forward to continuing this partnership and the sharing of ideas and resources to achieve our common goal.

Mural in Chichimuch School

Collectively, we all I think have a common misperception of health and disease in developing countries. In particular, we tend to think of developing countries as places riddled by infectious disease, like malaria, HIV, and tuberculosis. And, of course, these conditions and others like them are indeed very serious problems for many countries.

However, all developing countries are also experiencing growing burdens of what we in the medical profession call “noncommunicable diseases” (NCDs). NCDs are conditions like asthma, heart disease, diabetes, and cancer. Most of us think of these conditions as disease which affect primarily ‘richer’ countries, but this is not at all the case! For example, more than 60% of all deaths in the world last year were due to NCDs, and of those deaths more than 80% of them occurred in ‘poor’ countries. Of the 350 million people in the world who have diabetes, 280 million of them live in ‘poor’ countries. 70% of all deaths from cancer occur in ‘poor’ countries.

Combatting NCDs in developing countries like Guatemala is difficult. Unlike most infectious diseases, it is not enough simply to provide a cocktail of medications to kill off or control the infection. Think about diabetes for example. Effectively treating diabetes requires intensive laboratory tests, nutrition counseling, regular medical checkups, and treatment of a whole host of complications that arise over the course of the patient’s life (blindness, kidney failure, foot ulcers, heart attacks, and the like). Or think about cancer: surgically removing a tumor is not usually enough; the patient also usually requires extremely toxic combinations of chemotherapy medications (which have severe side effects and are very expensive) as well as access to radiation therapy, pain medications, and hospice care (in cases that cannot be cured). Care of NCDs, in other words, strains the medical system to its breaking point in a setting where resources like specialist doctors and medications are already strained beyond comprehension. It also requires a degree of coordination that the health care system often cannot handle. For example, in Guatemala, it is not uncommon for more than 50% of all patients with cancer never to go back for their second appointment with the cancer doctor. There are financial considerations obviously that affect this number, but there are also the issues of fear of the medical system, lack of trust in physicians in general, and lack of an advocate who helps the patient negotiate the system and decide what treatments are best for them.

Over the last several years, Wuqu’ Kawoq has been focusing more and more on coordinating care for NCDs, and we have updated you periodically about our successes and failures in this area. In 2011, we had an unusually high number of cancer cases, and I wanted to take this opportunity to describe to you a few of these cases so that you can all appreciate the complexities and the soul-searching questions that arise in this context.

In the spring, we encountered a case of a young man with a rapidly growing tumor in the neck. The tumor made it difficult for him to breath and eat. Because we were concerned that he was running out of time, we hospitalized him to facilitate workup and treatment. A biopsy was performed, but the results were equivocal. It turned out that this was a rare form of a relatively undifferentiated tumor, and none of us had any experience with it, nor did any of our cancer colleagues in Guatemala. The tumor was extremely malignant and rapidly growing, and there were several weeks of delays in starting treatment as we tried to figure out what was going on and how best to treat it. The man was eventually started on a combination of chemotherapy and radiation, but these only extended his life a few months. He died in the hospital, surrounded by family members and Wuqu’ Kawoq staff. Could we have sped up the diagnostic process? Would doing so have made a major difference? Should we have counseled the family to end (relatively futile) treatment earlier, so that the man could have died in the comfort of his own home?

This summer, we had a 40 year old woman who came to our central clinic with complaints of vaginal bleeding. Upon performing the vaginal exam, I immediately new there was a major problem; the woman had a huge tumor growing off of the cervix, entirely filling the vagina. We performed a CT scan which showed invasive cervical cancer spreading up into her pelvis, invading the ovaries and other organs on both sides. Advanced cervical cancer is one of the most incurable of cancers, even in the United States with the best-possible care. We explained this to the patient, suggesting that we focus on palliative and hospice care including radiation therapy. However, obviously in despair over the diagnosis, the patient got a second opinion from a private surgeon (not a cancer doctor) who suggested to her that she should be operated on. He performed a surgical debunking of the tumor, and the family took out a bank loan to pay for the procedure. She died from complications of the surgery. How do we improve our process of guiding patients through a terminal diagnosis? How do we ‘protect’ patients and their families from bankrupting themselves in consultation with for-profit opportunistic medical practices?

Not all the cases have such bad outcome. For example, we currently have a 30-something woman with a metastatic fibrosarcoma. This began as a tumor on her foot which she neglected (for fear, and also for lack of financial resources) but eventually spread to her lungs. The tumor has been removed surgically, and she has now completed 6 rounds of chemotherapy for the lung metastasis. She is doing well, and all of the lung tumors have gone away. Is she cured? Probably not. The lung tumors have a high likelihood of coming back at some point, or cropping up somewhere else in her body. However, she did well with the chemotherapy, she is in good spirits, and the treatment has unequivocally prolonged her life, potentially for some years to come. Going forward, however, how do we continue to provide support and guidance? How do we help this woman, with little previous exposure to the health care system, negotiate for herself the concept of ‘remission’ (as opposed to cure)?

This is a learning process for us all, and we any thoughts and insights from all of you.

Today, December 26th, is Wuqu’ Kawoq in the Mayan calendar.  For many of those working in our organization we are aware of the significance of this day and why it is the name of our organization.  However, I understand that sometimes our name requires more of an explanation for those not familiar with the Mayan calendar or the Kaqchikel Maya language.  And what better day than today to take the opportunity to revisit what this day means and how it became our name.

The Mayan calendar is a 260 day calendar made up of 20 days (which can be likened to the months in a Gregorian calendar), with 13 of each of these days.  However, rather than operating as the Gregorian (or modern, western) calendar that we know, in which the months go in order and contain all of their days together, the Mayan calendar operates with a continuously rotating day and counting number basis.  For example, rather than being Jan 1, Jan 2, Jan 3, etc., it would be Jan 1, Feb 2, Mar 3, Apr 4 etc. until each day name has counted through all 13 numbers.

The day that we officially became a recognized, registered non profit was January 1, 2007, or in the Mayan calendar, Wuqu’ (meaning 7 in Kaqchikel) Kawoq (the day name of this day).  So while January 1, 2012 will be our 5th year anniversary, today is actually our 7th completed year in the Maya calendar.

Each day name in the Mayan calendar holds a specific and unique meaning.  Kawoq is especially meaningful for us because it is a day for midwives, whom we closely partner with in Guatemala.  It is also a day for healing, especially women,  and a day to overcome problems. Please join us in celebrating this day in the Mayan calendar and how it has become an important part of our work in WK.

November 2011 we had a great clinic week with volunteer Doctors Jane Striegel and Ty Melvin, both of whom practice general pediatrics and specialize in pediatric nephrology at Carle Foundation Hospital in Urbana, IL.  The clinics in each community were full of kids as the pediatricians took to seeing the majority of children in our care, with an added focus on severe, chronic, and complicated developmental cases.

The communities we visited include Chichimuch, Panajachel, Socorro, Santiago-Sacatepéquez, Tecpán and it’s aldea of Paquip, and Paya, an aldea of Comalapa.

click to view photo album through facebook

Dear friends, for us hear at Wuqu’ Kawoq, our diabetes program in near and dear to our hearts. It was our first program ever, and still to this date one of our more successful. But we often get asked by others why we have chosen to focus so many of our resources on diabetes.

Here’s the reason why. Although many people, when they think about developing countries, they think about infectious diseases like tuberculosis and HIV and malaria. However, in reality, a majority of deaths in the world are caused not by infectious diseases, but rather by chronic medical conditions like heart disease and diabetes.

Speaking of diabetes in particular, almost 350 million people in the world have diabetes, and 80% of those live in poor countries. Over the next 20 years, the number of deaths worldwide from diabetes will double. In Guatemala rates of diabetes are rising. For example the rate of diabetes in women in Guatemala was 8% in 1980; today it is around 14%.

For these reasons it is essential that non profit health organizations begin to develop effective programs to target diabetes and other chronic conditions in the poor populations they serve. It is heartbreaking to us to hear stories like that of Fernando, one of our diabetic patients. He came to us discouraged and overwhelmed, suffering from both diabetes and heart failure. He had been told by another medical clinic that there was ‘nothing that could be done’ and that he should return home and put his affairs in order.

We at Wuqu’ Kawoq, however, do not believe that chronic medical problems need to be a death sentence, and we believe that poor persons are entitled to effective and high quality treatments for their health problems. This is why we have a diabetes program, and we thank you so much for believing in and supporting our vision!

Dear friends, great news!

Clara, who I wrote about a few weeks ago as she went into the hospital for open heart surgery, has now been home for about 1 weeks.

She just had her first post operative checkup with the cardiac surgeons yesterday, and everyone is very happy with her recovery!

We visited her several times in the hospital while she was recovering after her surgery, and we were very happy with the care she received at UNICAR. We will continue to follow her closely; until she is strong enough to leave her home, we will be making regular house calls to check up on her.

And Clara is just one of the numerous complex medical cases that Wuqu’ Kawoq helps to manage. Thanks for all your support, which allows us to do this important work.

At this point, you probably know more about chronic malnutrition that anyone else on your street! Now let’s get into the nuts and bolts of the project.

So, how will all of this work? In the next few weeks, Edesia (www.edesiaglobal.org) will begin production of 38 tons of Nutributter. In case you are wondering what that looks like, the picture below shows a pallet containing 1 ton of the product for a project we conducted in early 2011.

Once it is produced and packaged by Edesia, the Nutributter will be shipped via ocean freighter to a port in Guatemala and trucked overland to Guatemala City. There, Wuqu’ Kawoq will clear customs, take possession, and move the product to our own storage facility.

Our goal is to enroll 100% of eligible kids in each of our target communities. This is important because, iif close attention isn’t given to achieving coverage, the tendency is only to reach a small portion of potentially eligible children, usually those whose parents are more educated or more familiar with ‘development work.’ In other words, programs that rely heavily on parents simply ‘showing up’ to a distribution center tend to miss the children who are most in need of assistance. We will work closely with local leadership (e.g., the community development councils, elected officials, health promoters, midwives) in each community to ensure that a complete census of all eligible children is drawn up.

Once the list of eligible children is ready, a community meeting will be held for parents, where we will explain the program. At this point, they will be given the opportunity to enroll their children in the program. Each child will be given an ID card with space for recording monthly Nutributter distributions and other key information.

The list of eligible children will be compared after the community meeting to the list of parents who participated. In the case of eligible families who did not participate in the meeting, our staff members will make confidential visits to each home to give these children and parents the chance to enroll.

We will chart the length and weight of the kids at three month intervals, over the twelve months of our program (months 0,3,6,9, and 12). These statistics will serve as the primary outcome measures of the program. And you all will be able to follow along on our website. We will have a section devoted entirely to the USAID project – we’ll let you know as soon as that is live.

In the next several posts, we will start to profile the organizations that we will partner with to carry out this work!

Nuestro Diario article about Futuros Colectivos conference. Lots of errors, but still nice coverage.

Our grant from USAID will allow us to import a product called Nutributter into Guatemala. Nutributter is a Ready to Use Supplemental Food (RUSF) produced by Edesia LLC, a nonprofit in Rhode Island. (Some organizations are actively working towards producing a RUSF locally in Guatemala, but are still about a year away from that). Nutributter has been effectively used in numerous settings worldwide to address chronic malnutrition. In Ghana, for example, a 2004-06 Nutributter trial reduced childhood anemia and growth stunting and doubled the number of children who could walk independently at one year of age. In our case, a frequent lack of reliable water supply and cooking resources requires a product in a ready-to-use form.

As the name implies, RUSFs are designed to supplement a child’s diet – not as a sole food source. Nutributter is specifically designed for children 6-24 months of age. Interestingly, the children we see are born with normal weights and heights and grow well along their growth curves until 6 month of age. This means that maternal nutrition and breastfeeding practices are sufficient to guarantee child health until they are 6 months old.

Around 6 months of age, we observe that, due to lack of sufficient food (especially high quality foods), mothers tend to avoid introducing complementary foods to their infants until 9-10 months of age or later, despite World Health Organization (WHO) recommendations that complementary foods should be introduced to infants at 6 months of age. As a result, infants between 6-9 months of age rapidly fall off of their height curves. By 12-15 months of age, the majority of infants are stunted. Caloric intake generally is sufficient to maintain weight, however, so children do not become severely underweight. Indeed the incidence of underweight (low weight for age) and wasting (low weight for length) are both very low, emphasizing the point that stunting is the main concern. Since all of you are becoming experts on the issue of malnutrition, you know the lifelong effects that stunting indicates. (If you don’t know what I am talking about, then you missed my last post .

Nutributter supplementation for children 6-24 months of age is therefore ideally suited to prevent stunting. By introducing a high quality food and micronutrient supplement at 6 months, when infants should be transitioning to complementary foods, we can provide food security to the kids and prevent the decline in their length/height-for-age.

Another environmental feature which aggravates the onset of stunting in this age range is the exposure to contaminated water and food products, and the development of frequent bouts of diarrhea. Importantly, Nutributter delivers a daily dose of zinc, which has been shown in clinical trials to reduce the incidence and severity of diarrheal illness. Therefore, we anticipate that Nutributter supplementation will also impact diarrheal illness and interrupt the infection-malnutrition cycle.

And, all of this benefit comes in a foil packet, similar to the soy sauce in your Chinese take-out. It costs about $2.50 per child, per month. It is easily stored, won’t go bad, and doesn’t require any mixing or cooking. To read more about Edesia, our long-term partner, please visit their website at http://www.edesiaglobal.org/. There you can get more information about malnutrition, and other Edesia products that are changing the world!