The struggle of diabetic patients
I was doing a hypertension research project at Lighthouse Trust, Lilongwe, when I discovered Olive Kadzakumanja’s NGO called Community against Diabetes and Hypertension (CADH) during an online search. I contacted her and we met a week before I left Malawi. She suggested that we visit Matapira CADH peer group together.
All was set and on October 4 2017, I met Olive near a school called Share World at 7 am in the morning. We embarked on one of the minivans that functions as a bus in Africa. For me, this was a truly African experience – the van was full of people with their belongings and I had to climb over several bags in order to find a seat in the last row. Olive found a seat two rows ahead of me and once in a while, when she turned around, we both had grand smiles on our faces, looking forward to meet people in the beautiful valley of Matapira!
After about two hours, we got off the bus and found two men with motorcycles waiting at the intersection to a dirt road. Those two were our ride to the village of Matapira. The ride was unforgettable – it was such a freeing experience.
What I saw was like a scene out of a movie. The African landscape was stunning, with undulating hills in the distance. The sun was shining, the wind was blowing into our faces, playing with our hair. We arrived at the meeting point for the peer group – about forty small children were flocking around me, greeting and waving me.
This was overwhelming – I love children and after the adventurous ride on the back of a motorbike, this was the icing on the cake. Once the children had dispersed, Olive told me that they were orphans who are cared for at this site during the day until they return to their foster homes in the afternoon.
We reached the village. Four women and a man were sitting in the shade under a tree.
As it turned out, the man was the leader of the peer support group. We exchanged greetings before Olive introduced me to the man. We then proceeded into the meeting hall, where I helped Olive hang her Health Education Posters pertaining to Diabetes. After arranging the benches – on one side were the women and on the other side the men, we invited the CADH peer support group members to come in. Olive asked whether anyone spoke English to translate for me, no one in this very remote rural community did, so Olive doubled as my translator.
She normally avoids it because she does not want people to think that she puts words into the speaker’s mouth. I counted about 25 women and 6 men.
Olive introduced me to the group members in Chichewa and gave the word to the community group leader, who rose and welcomed me in Chichewa. The meeting had been arranged in an unusually short time because I was leaving Malawi soon. The group leader explained their biggest problem. At the nearby community health center, there are no drugs available to counteract hypertension. Only diuretics are more commonly available to rid the body of volumes that forces the heart to work harder. ACE inhibitors and beta-blockers cannot be prescribed because they are not available. ACE inhibitors protect the kidneys. Beta-blockers cause the heart to beat slower and with less force, thereby reducing blood pressure. They also help blood vessels widen to improve blood flow.
Olive had told me prior to the gathering that she had previously collaborated with an Indian doctor, who had helped her acquire the necessary drugs for participants.
Unfortunately, this contact no longer lives in Malawi.
At the time of my visit to Matapira, I was doing research at Lighthouse Trust, an HIV clinic and Center of Disease Control site where drugs are widely available, I now had a grassroots view of how the medical system works without a high-end clinical setting. The people here only have hope that one day life in Malawi will improve.
Apart from that, they live in a self-sustaining community with bare essentials. For me, it was really heartbreaking to see these participants living without proper medical attention because the appropriate drugs are simply not available. Working at Lighthouse to gather data for a 24 h Ambulatory Blood Pressure Monitoring Study in HIV positive patients, where patients get state of the art treatment, I saw what the reality for most Malawians truly is – a sad eye-opener.
When the group leader had finished talking, it was now the turn of the women who confirmed the group leader’s position and concerns. One woman said; please don’t think we are not interested but it’s only because of the communication barrier. Most participants do not have cell phones and the meeting dates are spread via word of mouth. The Matapira
CADH group counts more than 200 people and is therefore an unusually large group. There are 17 CADH groups within Malawi.
Olive then started her health talk, going along with the posters on the wall. When she was finished, we started looking at the group members individually. They all had a health passport with them. At every weekly group meeting, the BP is noted as well as the blood sugar of the diabetic patients. We started with the women. The group leader is in possession of a blood pressure monitoring machine as well as blood sugar testing kits. Members have access to these tools; however, they need to find the group leader in order to use them beyond the meetings. Many more BP machines would be needed for such a large peer support group.
After the meeting, Olive, the group leader, and I went on a walk to the village center to visit the newly established community health center, staffed with one doctor and two nurses. They have no anti-hypertensives. We thereafter boarded motorbikes again to take us to the intersection of the dirt road in order to take a van back to the capital city, Lilongwe.
Most CADH members were recruited when Olive, a retired nurse, volunteered at Kamuzu Central Hospital at the Diabetes and Anti-Hypertension Clinic. She teaches patients how to use the insulin pen, how to store insulin properly without having a refrigerator and shows them how to take care of their feet. She discusses nutrition and the fact that diabetes can cause impotence in men and low libido in women. This leads to serious marriage problems and often, infidelity.
The CADH peer support groups are a highly innovative approach – and, one of the most important and impressive factors – the peer support groups have elements of preventive medicine. Preventive medicine is hardly practiced in Malawi. Prevention is not a concept. This is due to lack of education and to the resource-restrained setting.
While collecting data for a 24 hour Ambulatory Blood Pressure Monitoring study at Lighthouse Trust in Lilongwe, I noticed patient adherence to anti-hypertensive drugs was a serious problem. Therefore, it was remarkable to see this grassroots, self-initiated peer support group with its highly enthusiastic members so involved in improving their own health.
My visit to Matapira in order to see a CADH peer support group in action turned out to be one of the most important excursions of my life. It showed me how much can be achieved with next to no resources. It taught me how the passion of one single retired nurse can mobilize so many people and do so much good.
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