Coping with lifelong chronic disease …….
At some 12 km South of Phnom Penh are the infamous Choeung Ek Killing Fields, the execution area of the victims from Khmer Rouge Tuol Sleng prison. Next to it is the Choeung Ek pagoda. MoPoTsyo’s Patient Information Centre member, Mrs Ouk Ratha waves to me from a distance as she walks towards me with her grandson on her arm. At 52 years old she looks young for a grandmother. “You are under the wrong tree!” she tells me. “This is the South side of the pagoda and I am living on the North side. I realize that the magnificent tree at the Pagoda entrance is a Po tree and not the Ampil tree she had told me about on the phone. Protected from the baking sun by the pagoda wall we stroll to her house, me with my bike and she with her grandson. “In March 2013, I moved out of the city centre and came to live here at the home of my daughter. I am alone after the death of my husband. He had diabetes too and died of Kidney Failure. Did you know?” She asks me. I answer her that I had heard it from the Peer Educator. Her husband was only 48 years old when he died, but he had been sick for two decades, ever since their youngest daughter was born. “At that time no one ever thought about diabetes or kidney disease, only AIDS and TB. Over the years we spent so much money trying to get diagnosis and treatments for him. Despite his disease, he has always kept working except for the last year of his life. Then he died in August 2010. He was a Police Officer in charge of the department for Human Trafficking”. The wall of the room is lined with her husband’s pictures and training certificates. “The state continued to pay his salary to me for 12 more months. After 12 months the allowance was reduced to 8000 riels (2 USD) per month. I am allowed to collect it quarterly. The gasoline to travel to the place where I collect it costs me USD 1.25, so for collecting USD 6. The children are all 18 years or older so there is no allowance for them. I also try to sell little things but I am really struggling to find the money to pay for the medicines. Nowadays I depend on my daughter. I ask her about her children. The eldest daughter is 27 years and works as a cleaner in a Hotel. The husband of her eldest daughter is a tuktuk-driver. I ask her about the second child. “The next child drowned”, she says. When she begins to talk about her 24 year old son’s death, tears are running down her face. I hadn’t heard about this tragedy and feel sorry that my interview has upset her.
After some time we move on to talk about her other children. “I have 1 more son and 2 more daughters. They work In the garment factories. My eldest daughter is working during the day so I take care of the baby”. His name translates as “Monday August”, because he was born on a Monday in August, nine months ago. Monday August is not happy with all the attention I am suddenly getting from his grandmother, so I let her appease him, while I take a look at her self-management book. It prescribes 7 types of daily medications including insulin. Her total monthly cost is 36,630 Riels (USD 9) including 15 syringes for injecting the insulin. From the peer educator she has learned how to inject herself so she does not have to pay a nurse to give her daily insulin injections. She will go to see the Doctor again next month. She knows that he wants her to inject twice per day, instead of only one time as she is doing now. Since she moved out from the city center, she now lives far away from the peer educator and she is not getting as much community-based support as she was used to. She is using urine glucose strips to check her on her glucose levels, because she has no blood glucose meter herself. “I depend on my daughter’s salary”, she says. “I borrow the money to pay for the medication and each time when she gets her salary, I can reimburse the loan”. To generate some income for herself she sells local products that hang above a small table at the entrance of the house. To show me where she stores her insulin, she opens an orange cool-box that contains mainly water bottles that are for sale and shows me the plastic container with two 10 ml vials she bought from MoPoTsyo’s Revolving Drug Fund. She continues to take glibenclamide (=Glyburide), metformin for her diabetes. “I have also medicines for high blood pressure and to improve my lipids”, she says. She displays her medicines on the table. “If it weren’t for the 70% discount, I would not be able to afford it”, she says. When she sees I am looking again at the row of pictures and the training certificates I spot also the picture of her son, the one who drowned. “I only have his picture now”, she says. Not knowing what to say, I can only mumble “Your life has many unhappy events. It must be difficult for you”. “It is my destiny” she says but uses the Khmer word “promlikhet”, for the Buddhist concept that refers to the consequence of a cause. “The monks tell us that this happens if we don’t do the right ceremonies.” she says with a weak smile.
FINANCES: Thanks to the donations last year we have been able to increase sharply the number of patients such as Mrs Ratha who benefit from the subsidy but the donations have not kept up with the expenses. Unless sufficient sources of funding are found for the beneficiaries, this voucher system cannot be sustained much longer. The preferred solution is that these costs are included into the existing Health Equity Fund system of the Ministry of Health but that is easier said than done.
Mrs Sang Savoeun still remembers some of the French words she learned during her 3 years at the Lycée Tangkol in Baray district. She was born in 1947 some 250 km North of Phnom Penh, in Kampong Thom province, where she grew up during a time when Cambodia was still a French colony. After 1979, having survived the Khmer Rouge regime, she moved to the capital Phnom Penh. There she lives in the Boeungkak area with her husband and family in a modest house along the railroad tracks. Her children and grandchildren are tall and slender. They seem to have inherited her natural grace. Her husband sits near her on the low table. He was a train driver employed by the National Railways until his retirement in 1993 already 20 years ago! During most of his career the engine of his locomotive was powered by coal. Then our conversation is interrupted as the “modern” Cambodian train gently passes by allowing just enough time for residents to move themselves and their possessions temporarily off the tracks as part of their daily routine.
While the grandchildren are playing with balloons in the yard, she tells me how her children have found simple ways to support the family's livelihood: one son is a motodoub driver. She introduces her daughter who is busy doing a nail job on a client’s foot. Another long limbed daughter is the organizer of the early morning "gym classes" in the public garden in front of the Ministry of Defense, which lies just at the other side of the railway tracks.
We go back in time again: In 1997, a local private clinic nearby gave Mrs Savoeun the Diabetes diagnosis. The clinic staff had found a strong presence of glucose in the urine. "3 crosses....that must have been more than 300 mg", she recounts what happened 16 years ago: "I had gone there because the ants were going after my urine. At that time the clinic gave me medicine that would last about one week. After a few weeks when the hyperglycemia symptoms returned, I would go there again to get medicine for another week. At that time I didn't understand how diabetes works”. She continued to live like this until 2005, when Rin, the diabetic MoPoTsyo peer educator, came to her house as part of the new screening program. Then she became member of MoPoTsyo. “I began to exercise, follow the MoPoTsyo food pyramid and began to take one tablet of glibenclamide every day. I felt much better and the sugar levels were well under control, but sometimes too low. Now also I find it difficult to keep within the normal range, not too low and not too high”.
Nowadays she takes 3 types of oral medication: 3 tablets of glibenclamide, 2 tablets of metformin, 1 gemfibrozil. She shows me a smart blue plastic pillbox with 4 compartments. The pill compartment to which the cord is attached contains the pills to take in a row: first one is for the morning, then the one for lunch time and further to the right for medication at dinner time, 3 times a day. "My daughter found this for me in Poipet", she says. “At the 7-11 in Thailand”, the daughter corrects her while she remains bent over the toenails of her client.
Mrs Savoeun also injects herself Insulin one time per day at 7 PM. To show me, she takes a plastic bag out of the cool box where she keeps her 10 ml insulin vial close to a block of ice. "Sometimes I inject only 8 units," she says, "It depends. I don't want my blood sugar to be too low. One time I had only 48 mg Blood glucose when I measured it. When it is too low, I quickly take a sweet drink. I find too high and too low are both unpleasant, so I try to inject the right dose. Until last year I exercised every day but this year I don't exercise anymore because the doctor told me that now I am too old and he is worried that I may fall. " I tell her she should try to find a safe way to continue to exercise. We talk a bit about advantages of cardio, weight lifting and a home bike. I recall with her how when I first met her in 2005 she was having hypo's because of the glibenclamide she had been prescribed and how I recommended her to halve the dose.
A former colleague of her husband walks into the yard politely greeting everyone. The heavy man used to be the train mechanic. “There is only 3 of us left to collect our retirement money from the railway company. It's been privatized”, they explain to me. Since last year he also is diabetic and joined MoPoTsyo. "He is a new member", Mrs Savoeun says. "His blood sugar is about 100 mg before eating now, but it was 129 mg when he joined", she tells me. He has been pre-diabetic for quite some time. “So many people have died already.” she says. “But I am still alive….!” she says laughing. She hesitates and gently slaps my knee because we have known eachother for 8 years now.
As a voucher recipient she benefits from a discount of 70%, a USD 9.13 reduction on her total monthly bill of USD 13.05 for her prescribed medicines. Her bill is relatively quite high compared to most other diabetics. Last month, MoPoTsyo was accepted as a member of the association of Cambodian Social Health Protection Agencies. We are trying to get our medicine-discount system recognized and integrated into the national system so it can become government funded in the future.
Mrs Peng Aoy has been a member of MoPoTsyo since 2006. 7 years ago, she was in her early 40ies when her Diabetes was detected thanks to the urine strip. She only found out about it when MoPoTsyo’s peer educator gave her one urine glucose strip (USD 0.03) for self-screening at home. This type of diabetes screening consists of 2 steps. First, people use this glucose strip by dipping it into their urine within 3 hours after a lunch or dinner. If, after 30 seconds the color of the urinestrip has visibly changed, the person will alert the peer educator who will perform a Fasting Blood Glucose test. For this, the Peer Educator uses a Glucometer that measures the level of sugar in a tiny drop of blood taken from the fingertip with a disposable lancet. The diabetes diagnosis must be based on the blood glucose level, so not just on presence of glucose in urine. The reason for using this two-step approach is that blood glucose strips are 10 to 15 times more expensive than urine glucose strips. While this screening method is not perfect it has worked well for many poor Cambodian diabetic people such as Mrs Peng Aoy. She was completely unaware of her diabetes before she performed herself the urine glucose test. Poor Cambodian people are usually slim but despite this they can be walking around with high blood sugars as a result of their Type 2 Diabetes. Mrs Peng’s Body Mass Index (BMI) is less than 20 so she is lean. About half of all 5,500 members of MoPoTsyo with Diabetes have a BMI of less than 23, not overweight!
Mrs Peng is a single mother of 2 children. She is a walking fruit seller: This morning she bought 15 kg of oranges. She can carry a load of up to 20kg on her head. Then she starts to walk trying to sell it until she has sold everything. That is the income for food and for everything else, Every day she walks many kilometers from Boeungkak lake to Psar Daem Koo where she buys the fruit, then to Independence Monument, then along the riverside and back to the Boeungkak area where she shelters with the children. She explained me how the walking helps her burn her sugars and stay healthy. She recounted how she can feel the difference on days she is not making her round. Despite her physical activity, she is also on prescribed oral medication at a cost of USD 2.52 per month. That is affordable for most Cambodian citizens. However her situation is a bit special:
During the big 2010 fire in Boeungkak lake that destroyed many huts, including hers, she had lost all her property including her official Poverty ID card. This poverty card is becoming increasingly important for social health protection. It entitles her to free care at the public Hospitals ..for acute health problems as the hospital fees are paid for by Health Equity Fund, managed by the Cambodian NGO Family Health Development. That NGO’s funding to pay for these health care costs comes from the Ministry of Health.
However Mrs Peng’s monthly costs of her maintenance medicine are not yet covered by this system, whether she has the card or not. This is why – temporarily – we have been helping her since the fire. After the fire had happened, MoPoTsyo entitled her and other Diabetics that had been affected to medication free of charge: 100% voucher support. But how sustainable is this? If we succeed in linking our existing voucher scheme with the Health Equity Fund for acute care funded by the Ministry of Health, we can tap into a sustainable source of financing for the long term to create coverage for chronic care costs for vulnerable diabetics. It is going to be one of the challenges for 2013 to try to figure out if this can be organised and how. Mrs Peng’s situation shows that for some vulnerable people having to pay even a low amount is undesirable because it cuts into their food expenses or the school fees of the kids. For most other patients such low amounts are not an issue. With growing numbers of chronic patients on prescribed medication, efficient and precise targeting of assistance must be built into the social health protection mechanism to reach them with an effective system that is affordable to the Cambodian society itself. During the last quarter of 2012, the 2 NGO’s began to work together to see if they can figure it out. Time will tell but in the meantime your support is needed...
Thanks to your generous donations, we’ve been able to help more poor people with diabetes who are struggling to pay their prescription drugs. Most patients are women. We raised the number of people receiving a discount-voucher to 101. Your extra support helps them to pay for their medication every month. The discounts vary from 50% to 100% depending on the individual situation of every patient and the height of the monthly bill.
As you can see, you have made a big difference for a much larger number of people who were struggling with these costs. Their number went up from 64 to 101 thanks to your donation.
Here is Mrs Sarouen. She has been a member of MoPoTsyo since 2005, when we first began to work in the area where lives. Life has been difficult for her and for many years she has been struggling to get by. When she first registered, she had to take only oral medication. She receives 90% discount because otherwise she simply cannot afford the insulin that she must take nowadays, 7 years later. She is seen here discussing with experienced Peer Educator Mr Sreng San early morning after most of the other diabetes patients have left.
Sreng San is himself diabetic too. He takes care of a large number of patients like Mrs Khuon Sarouen, some of whom are alone and old. For them it is not easy to switch to insulin and inject themselves several times a day. Fortunately, the support group is there, every Saturday morning at Mr San’s home where she can meet lots of other people, some of whom have similar experiences. It is also the place for a check of blood glucose, body weight, blood pressure and making an appointment with the doctor at the referral hospital, if things are not going well.
Our financial goal is USD 20,000 per year for 250 patients. So far we have raised over USD 4,000. The total monthly value of their discounts which these patients receive is USD 458 so we will run short on yearly basis. We hope to raise more in the coming months to continue to help our people with diabetes and …help more people. Your support is more than welcome.
Our Cambodian NGO MoPoTsyo is advocating for the adoption of affordable structural solutions to the problems that we encounter. First we help to find these solutions and when we find them we test them out and we share our knowledge with everyone who wants to know more about it.
For detailed project activities, please go to our website at http://www.mopotsyo.org
Maurits van Pelt, October 3rd 2012
Thanks to the fabulous donations, we’ve been able to help more people with diabetes. We raised the number of people from 58 to 92. Your extra support helps them to pay for their medication every month. Among these 92, three out of four (69) are women. The discounts vary from 50% to 100% depending on the individual situation.
A little bit of support can be critical to improve quality of life. For example, here is Mrs Nhem Samat with her new voucher to buy her medicines for June 2012 from the revolving drug fund. The lower the monthly costs, the better she is able to afford the daily treatment. She has an 80% discount on her monthly bill of USD 9.75 bringing it down to just USD 1.89, a level with which she can cope.
She lives with her husband. They are both old and have very little money to live on so meeting the cost of medicines is a real challenge for them. She likes the routine of joining the Tuesday morning group of diabetics led by the peer educator in area where she lives. That morning also Dr An Prasath from the Public Health Center nearby was making an informal visit.
Our financial goal is USD 20,000 per year for 250 patients. So far we have raised over USD 4,000. The total monthly value of their discounts which these 92 patients receive is USD 456 so we will run short on yearly basis. We hope to raise more in the coming months to continue to help our people with diabetes and …help more people. Your support is more than welcome.
For many more news items and detailed project activities, please read our last newsletter called “highlights” by clicking on the weblink here below:
Maurits van Pelt, 26 June 2012
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Combined with other sources of funding, this project raised enough money to fund the outlined activities and is no longer accepting donations.
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