Paladie K. Mategekos' Story

Disease: Type 1 Diabetes

I am Paladie Mategeko, a 22 years old girl who lives in Gasabo district, Kigali, and I have been living with Diabetes since 2010. 

My main challenges during the lockdown were a shortage of medicine and transport difficulties to the hospital. I remember we once used a private car travelling to Rwanda Diabetic Association Clinic, and the traffic police stopped us. They requested us proof like a patient card which we didn’t have and they thought we might be going to visit people. It required me to show them some medicine that I was on insulin and they did let us pass. 

Regarding the accessibility of treatment and medicine before the pandemic, they gave us a medicine that would last a month, but they reduced the amount of medicine received to avoid running out of stock during the lockdown. We stayed at home during the lockdown, so the blood sugar rose and caused me to use more insulins.  

I am worried to be infected by COVID-19, as people living with NCDs are more likely to be severely ill once contracted with the coronavirus. So, it affects them more than people who do not live with NCDs. Though there is neither cure nor vaccine for COVID-19 yet, the good news is that I am always ready to follow preventive measures against COVID-19.

I warn some people in the community who think that PLWNCDs like me living with Diabetes at this young age are not able. They think that I am waiting to die which is not true because I can live as long as other people. Therefore, I call them for changing their mindset.

It would be good to increase the quality of services at the hospital given to PLWNCDs especially Diabetes. For instance, they should have a doctor at the hospital who only takes care of them and a specific day for them so that they can be treated earlier before serious complications.

MBANDA Vincents' Story

Disease: Asthma

I am MBANDA Vincent from Kigali city. I am 74 years old and have been living with asthma for 47 years.

During the covid-19 pandemic, the family and I faced significant uncertainties as a result of the need for asthmatic care. Considering the inception of covid-19, I felt uncomfortable wearing a facemask because it makes me breathless. Though, this was among the government directives to contain the spread of the deadly virus.

My age and living with asthma discouraged me during the covid-19 because I heard that older people and those with asthma are at high risk of becoming seriously ill with coronavirus, especially if they have severe asthma or their condition not kept under control.

When I don’t have a crisis, I don’t take medication. This episodic treatment helped me succeed in following my asthma prescriptions despite the lockdown. However, asthmatic inhalers and their synergizing drugs are costly as community health-based insurance doesn’t cover many. So, I used to get them on my own, which is tough for me as a retired person.

It would be more supportive of having respiratory disease specialists at our nearest health facilities to help us in an asthmatic crisis. It truly takes us a long time on the patients’ queue, which confronts severe emergency treatment. Any financial assistance would be an add-on to pay our prescriptions; therefore, adhere to our medications.

Nsabimana Odas' Story

Disease: Breast Cancer, Hypertension, and Diabetes

I am Nsabimana Oda from Kicukiro in Kigali City and have lived with Breast Cancer for 17 years. I also live with Diabetes, high blood pressure, and a skin disorder. They all cost money but it also requires a person to be always joyful. Me, I sell bricks but these days’ people do not have money, so I do not have enough clients.

Some people were not able to get medicine as they were not able to reach hospitals. Those who were unable to reach their hospital, couldn’t get medicine. Sometimes they could go but come back without medicine. They would tell them to come back another time. The medicines are not made in Rwanda. Consequently, there was a shortage of medicine since roads were closed and planes were not flying. So, the medicine could not reach the country.

A person living with Cancer needs healthy eating behaviour and variety types of food. But in those days there was poverty and sometimes markets could not open, it was really difficult to get vegetables and fruits to eat a healthy diet. It was a heavy burden on the family.

People living with cancer have to take a pill daily for five years and they have to buy them. It is very hard for them as the economy has been affected. If possible, there can be advocacy for those people to get facilitated during those 5 years especially the ones using community health-based insurance.

Uwimbabazi Emerthes' Story

Disease: Breast Cancer

I am Emerthe Uwimbabazi from Kigali City. I am 34 years old and have been living with Breast Cancer since 2015. 

It is really difficult when it comes to a person living with breast cancer. The way you settle in society is no longer the same, you start to feel ashamed mainly. I acquired it while I was a girl, it was not easy. It is not easy at all, people discouraged me, and they were telling me that I will never get a husband. I started feeling useless and that I was going to die. In the beginning, you feel like life is not going on and you feel depressed, simply you feel like it is the end.

We can’t bypass the existing gap in awareness about breast cancer. In Rwanda, women do not yet understand things related to breast cancer. Awareness campaigns took place, conferences took place and presentations took place but they still have little knowledge. 

Like a shred of evidence, most people fear getting diagnosed. People can feel sick and sense a lymph/tumour in the breast but are afraid to go for diagnosis by fearing that it is cancer. That results in people starting treatment very late and might lead to death.

There is an improvement in the treatment of breast cancer within the country. At the time we started to get treated for breast cancer, wherever we were in the country we were supposed to go to BUTARO cancer centre of excellence, now things change. There is the additional treatment of breast cancer in Kanombe Military Hospital.

What I think can be done in terms of great coverage of breast cancer disease is to boost awareness campaigns. Everyone can be sick and life keeps moving on and keeps doing what they used to do without change. The way she interacts with others, those you wear and life move on without thinking a lot about yourself. 

Sometimes people are afraid to tell others that they have cancer or even fail to go to work somewhere so as to escape questions from people about their life. 

People should know that when breast cancer is detected at an early stage, it is cured. This is not yet well understood. 

We are grateful for the Government of Rwanda through the Ministry of Health by bringing the treatment at Kanombe Military Hospital. We can’t forget thanking civil society especially Rwanda NCD Alliance for advocating and raising awareness on breast cancer and other non-communicable diseases in general. The special thanks to Ms Phillipa for initiating the Breast Cancer Initiative East Africa (BCEIA) where everyone put down their burden on breast cancer and feel relieved and valuable in the community. We have hope that efforts in your collaboration should improve breast cancer awareness.

Marie Mukandindas' Story

Disease: Breast Cancer, Hypertension, and Asthma

I am Marie Mukandinda, a 57-year-old woman who lives in Kigali, and I have been living with Breast Cancer, Hypertension, and Asthma. Before the COVID-19 pandemic, my journey to the health facility required money such as travelling to Kibagabaga Hospital, Butaro Hospital from Ruhengeri, but my relatives sponsored me. 

Unfortunately, those who used to support me stopped because of financial issues as an impact of the pandemic. There is a doctor who helped with tickets to reach Kanombe hospital, but I don’t know if he is affiliated with an organization. I think he represents an organization that sponsors me.

My experience in the process of reaching the hospital during the lockdown was terrible. I used a motorbike and a bus to reach Butaro Hospital, and it was possible to spend 3 days there waiting to get better and come back home. However, I have not taken any medicine because of the lockdown. Also, I can’t breathe when wearing a facemask, and I have hearing complications. The good news is that I got treatment from Kibagabaga Hospital which is near to me, and Kanombe Hospital replaced Butaro except when they sent us back to Butaro Hospital for further treatment.

COVID-19 extremely impacted us. For instance, I ate and drank because the other doctor brought me milk, sugar, and porridge flour but all stopped. As people living with cancer, we need more drinks because of pain and high burning temperature inside our body. You understand it is a big challenge for us who are unemployed. 

Someone can sponsor me to start a small business so that we can get food. I lost weight because of not eating what I used to eat, and I had general weakness and a headache. I have done nothing about asthma except staying inside the house. Since I don’t get adequate treatment, I feel pain in the vessels and chest, and there was a time when I couldn’t breathe. 

I think we should get a transport facilitation and something to drink as well. We need a lot of support. Even food is not available.

They give me for instance Minocycline covered by Community-Based Health Insurance but not applicable for expensive drugs. For the expensive drugs, it requires me to buy them on your own in a private pharmacy. You can advocate for us so that Community-Based Health Insurance can cover all medical costs especially those who are in Ubudehe Category 1.

Rukundo Alexiss' Story

Disease: Kidney Disease

I am Rukundo Alexis and I have lived with kidney diseases for almost a year now. Before the pandemic, I was a driver and that is how I used to supply my family. When the Pandemic hit Rwanda, I lost my job and that was the beginning of life struggle and miserable life that affected my health. 

During this COVID-19 Pandemic, it was difficult to reach the treatment centre since there was no public transport. “It was hard to travel, there were no transport means, it was hard to reach the pharmacy and sometimes you could get there and find that they don’t have the medicine you want”. There was also a shortage of medicine thus a change in their dosage and some of us were not able to afford the treatment costs.

As a person who lives with Kidney disease, I am required to do the dialysis at least 3 times a week. But because I cannot afford it, I do it twice a week. Food also became expensive and I was no longer able to afford my diet. My family has also been affected by this pandemic as they couldn’t get what they used to get. I am worried about my health because if the pandemic persists, we will run out of medicines which were supposed to help us and our lives will be in danger.

As we keep applying the preventive measures, we will win the battle against the COVID-19 pandemic. Life will be restored, medicine will be available and everything will go normal and every patient will be able to get proper treatment as wish.

Nideria Ingabires' Story

Disease: Cardiovascular Diseases

I am Nideria Ingabire, a 28-year-old woman who lives in the Bugesera-Eastern Province of Rwanda, and I have been living with Cardiovascular disease for 5 years.

From where I live to reach the hospital, it took me 2 hours during the COVID-19 pandemic, but it was a 30 minutes journey before the pandemic. It was a struggle to get to the hospital during the pandemic because I couldn’t wear a facemask for more than 50 minutes. It caused me breathing complications. Therefore, when I put off the mask, the traffic police stopped me and asked me the reasons for violating the COVID-19 preventive measures.

It was a big challenge to reach the hospital because I live with heart disease, so walking faster was difficult. I was supposed to wake up as early as possible in the morning to walk slowly to the hospital. When I walked faster it caused me complications that I needed to take a break to keep walking. 

Most of the time, I missed some medical appointments, and I went to Nyamata Hospital for treatment and medicine during the pandemic. I used to stay in the hospital because of the heart surgery I had in 2018. 

Concerning the accessibility to medicine, my medicines are so expensive including Warfarin 5. When it is not in the Hospital stock, I go to buy it at Kipharma. There is another medicine called Lasix, and it is not easy to buy it from a private pharmacy. I am not even satisfied with my Ubudehe Category which is beyond my financial ability. Therefore, it is affordable at the hospital but very expensive in private pharmacies.

There is a change in the amount of medicine that I took, for they increased the dosage. For instance, I took Warfarin 3.5, but it is 5 dosages now. I am supposed to take a diet based meal, and there is food that I have not to eat for health reasons. Also, it is like I live alone with no expectations from a child of 5 years old. Therefore, renting a house and affording food was complicated, and it was possible to spend a day without eating because of unemployment. I wouldn’t eat any type of food because of the regime, and I am still experiencing that difficult life until now. I was required to sell any possession to afford medicine and transport costs. For instance, I sold my phone which was working properly to afford the transport cost.

I am worried about contracting COVID-19, and I would be at high risk after being infected due to my normal breathing complications. I have heard that it affects mostly someone like me with respiratory issues, so I can’t survive even 2 days if I am infected. However, I try my best to prevent myself from COVID-19.

There is no vaccine, so I try my best to prevent myself and my family from the COVID-19 infection so that we can’t die because of the infection. That is what I do for my well-being.

My complication was inflammation. It wouldn't have happened without the COVID-19. If I get access to treatment as quickly as possible, it would not happen. There is no big change in my lifestyle, but the change was not travelling to visiting friends and families. I live alone and have that freedom of travelling, but COVID-19 changed it all. 

As people living with non-communicable diseases, we should get special attention at the hospital and be served first without being on queues like others. For instance, I might go with serious complications where even speaking is impossible, so when I go to the waiting line that brings my health into trouble. There would be our specific doctors to take care of us only to prevent further complications. 

As people living with non-communicable diseases, we should get a specific Ubudehe category to get special support. For instance, for people who are in Ubudehe Category 3, we have no support to get medicine at affordable prices. Medicine is very expensive, we spend a lot of money, that is why there should be advocacy for us.

What I can say to people living with cardiovascular diseases or others is that getting early treatment is the key. You can sleep and die before waking up when you don’t have access to medicine and treatment as early as possible and follow the doctor’s instructions. Therefore, all people who are not sick yet, should follow the doctor’s instructions and do a medical check to know their health status.  

MUKASHEMA Jeanines' Story

Disease: Type 1 Diabetes

I am Mukashema Jeanine from Nyanza District, living with type 1 diabetes for 11 years. My lived experience during the covid19 pandemic was marked by tons of challenges.

During the unusual period caused by the Covid-19 pandemic, it took me by feet, 2 hours and a half to reach the hospital. It was associated with the closure of roads and the confinement of public transportation services. It has been a big challenge that resulted in the deferment of medical appointments.

Financial hardship and shortage of medication supply characterized my life. Whether the covid-19 pandemic or not, to get both medicines and laboratory tests is always challenging because they are all high-priced. Sometimes I didn't even afford hospital services payment; therefore, I was obliged to leave my identification card until I got money to pay for services offered.

I spent a lot of time at the hospital even though I could not get anything to eat. It resulted in skipping dosage or failing to respect nutritional guides, thus cease to take medication as prescribed. I remember that I used medications reserved for only one month for three months, and when they were done, I started looking for money to buy others.

The undervaluation of People Living With Diabetes among their neighbours and society still exists. People who are not fully aware of Diabetes, use it to stigmatize people living with Diabetes. Particularly those with type 1 Diabetes who are on insulin therapy, saying that Diabetes results from personal responsibility failure. 

As for advice and wishes, I am calling for increased education of Diabetes in the general public to break away mythic characters. Moreover, government and civil society organizations working on non-communicable diseases should work collaboratively to assist people living with type 1 Diabetes to afford their daily needs, including food, insurance, and transport to healthcare facilities.

Faustin Batumanyehos' Story

Disease: Cardiovascular Diseases

I am Faustin Batumanyeho, a 32 years old man and farmer who lives in Nyagatare district, Eastern Province. I have been living with cardiovascular diseases since 2019.

There were challenges because of the lockdown. When I went to Nyagatare Hospital from home, they stopped me and I missed the different appointment of taking medicine. When you are sick, you should take a balanced diet as recommended by the doctor. So, we didn’t get enough money to buy food as part-time employees. If COVID-19 cases keep rising, there might be a shortage of medicine. 

I request people to stop being indifferent to PLWNCDs especially cardiovascular diseases and start to pay much attention to them when they reach the Hospital. Unless it happens to our hospital only, they don’t give us quality or special services but instead, treat us like other patients of Malaria. Therefore, we should get specific doctors who would take care of us, not like other patients.

We would get financial support in one way or another because of the disease. We don't have enough energy like others to work to improve our standard of living. For that reason, there should be advocacy in the government so that we get financial support.

Epimaque Hakizimanas' Story

Disease: Type 1 Diabetes

I am Epimaque Hakizimana, a 30-year-old man who lives in the Kayonza-Eastern Province of Rwanda, and I have been living with Type 1 Diabetes for 12 years.

My journey to the hospital was complicated where I went to Rwinkwavu Hospital feeling insecure during the pandemic for not having permission. Fortunately, I explained to the security guards about my travel and understood me.

The COVID-19 affected many people including me such as the businesses failed, and many people lost their jobs. Things got worse and the prices raised at the market, or some products were no longer available at the market. My hope of life has reduced because I thought anytime there would be no access to medicine, because of no pharmaceutical industries. Instead, we import all medicines, and flights are stopped. I think my life destiny has deviated.

I am worried that if COVID-19 cases increase, things might get worse. COVID-19 cases trends, it is ups and downs time after time. For that reason, education might be affected badly or stop. Well, the people should always follow COVID-19 directives for preventing its spreading. This would help different businesses to reopen again, and things can get improved. My plans for improving the standard of living have changed, but I still have to make some adjustments though some of my plans will even never work. 

Some people complain about the services they receive at the hospital. they want to be treated well because of their pain and depression. They want to be shown compassion and be served well with a positive change. People in charge should treat them well as the medical profession is a calling rather than a business.

People living with Diabetes, Cancer, asthma and others, are treated as disabled people. They are mistreated and considered to be less important people who should be in isolation places. They should know that they are people like others, and they deserve human rights. Their problem is only a disease, but they can do even better. 

I would like to talk about people that were hurt due to stigma and corrupted people who don’t provide what people who are in trouble deserve. Some of the people living with NCDs experience social stigma because of marrying someone living without a non-communicable disease, that is too sad. Where they mistreat him/her in the family because of that, and that person faces psychological problems and might lead to misuse of medicine.

I call everyone for supporting and showing compassion to these people living with non-communicable diseases to enjoy their life. Also, people living with NCDs should follow the instructions given by the doctor, this will reduce the burden of our government to help them. People living with NCDs have the power to work and improve their standard of living, so the government should contribute less to support them. I encourage them to understand that living with NCD is not the end of the world. Family and friends of people living with non-communicable diseases should understand this and support them to find solutions. 

Munezero Jeans' Story

Disease: Kidney Disease

I left my family to be hospitalized in Gisenyi Hospital 6 months ago. Was it the problem of the severity of the diseases? No way! Rather the lack of hospital with special treatment of kidney diseases in Musanze district and elsewhere nearby the district.

Within the period of COVID-19, the gaps in different health systems have been revealed as the lack of the capacity to cope with the problem. People living with non-communicable diseases are most vulnerable to the COVID-19 pandemic, their special care was the point to reduce the morbidity and mortality rate associated with COVID-19.

The lack of hospital with kidney special treatment in Musanze district caused me to be displaced and went to live at the hospital. We only have 5 hospitals countrywide with kidney disease special treatment among them 4 situated in Kigali city.

The hospitalization was not because of the severe illness but rather the high cost of travel tickets from Musanze to Rubavu. For instance, it did cost me  13,500 RWF of transport every time I went for dialysis before COVID-19 while in the period of COVID-19,  it increased up to 24,000 RWF. A burden to a teacher like me with an insufficient salary.

I was wondering how I was going to get 24,000 RWF per week for travel and additional treatment fees while I wasn’t able to get 13,500 RWF. Additionally, people who were supporting me stopped due to COVID-19. I thought my life reached its end. So, I decided to leave my home and be hospitalized without anything at least to be near the dialysis machine.

There are limited Kidney disease treatment centres in Rwanda. These are Gisenyi Hospital, CHUK, Kanombe Military hospital, King Faisal, and African Health Network Hospital in Kigali. Wherever a patient is located in the country has to reach one of those treatment centres in Gisenyi or Kigali city.

There is no district hospital with special treatment of kidney disease except Gisenyi hospital which is supported by a team of Indians in treating kidney diseases.

We are suggesting to the Ministry of Health the provision of dialysis machines; at least 2 dialysis machines in district hospitals to ease the accessibility to the treatment of kidney diseases. We can’t limit ourselves to dialysis as our country is developing. I would also suggest performing transplantation so that people won’t necessarily travel to India.

Theresie Nyirarukundos' Story

Disease: Type 1 Diabetes

My name is Theresie Nyirarukundo from Muhanga District. I am 29 years old and I have lived with Diabetes for 24 years now. During this Covid-19 Pandemic, I faced the challenges of poverty and a shortage of medicine. Sometimes I could take my time and go to the hospital but while arriving there, I could find that there is no medicine or they give you a smaller amount than usual. This affected me because reducing the dosage makes my condition worse.

Nurses and doctors are more focused on the COVID-19 pandemic preparedness and response, and they leave people living with NCDs behind. It was also difficult for me to reach the hospital for treatment and insulin. This was because there were no means of transport in the lockdown and I couldn’t afford a private car. I would also sometimes get discouraged to go to the hospital because I could meet someone who has COVID-19 and I would get infected too. And for people living with NCDs they are more likely to become severely ill when infected with COVID-19. 

As a tailor, I was no longer receiving customers as before the pandemic, so I had no income. I live with five people and I am the one who is supposed to take care of them and the money was not sufficient. I reduced the amount of insulin I used to take because as people living with Diabetes, we only take medicine when we take enough food.  Most of the time I could find myself having low blood sugar levels because of insufficient food and this is dangerous if it is continuous and can cause damage to organs such as the eyes and kidneys.

There should be a lot of advocacy efforts specifically focusing on the problem of shortage of medicines as the lives of PLWNCDs often depend on these medicines. Some medical issues should be solved. Even though the services are quick, people living with NCDs still face a lot of problems. We have to wait in queues like other patients, but as hours go by, some patients with Diabetes start having low blood sugar levels. It would be good to have a doctor at the hospital who only takes care of people living with NCDs or Diabetes specifically, and to have a specific day for them so that they can be seen for treatment more quickly.

Alphonsine Manirihos' Story

Disease: Cardiovascular Disease

I am Alphonsine Maniriho, 39 years old woman who lives in Musanze-Rwanda and has been living with cardiovascular disease for 10 years and has had heart surgery.

One of my main challenges is that transport restrictions during lockdown were terrible experiences. It took me an hour and 30 minutes before the COVID-19 pandemic to reach Ruhengeri Hospital. However, it was challenging to travel during the pandemic because they stopped me sometimes to come back home before reaching the hospital as I had no permission,  no means of transport, and mostly walked to the hospital the whole day. This affected me badly as I missed many medical appointments and it led to blood clotting complications.

The accessibility of medicine and treatment during the pandemic was unlike compared to before the pandemic. I didn't miss the medicine before, but I did sometimes miss the medicine in the hospital pharmacy during the pandemic. Therefore, I struggled to buy the medicine from a private pharmacy or wait until the next appointment to get them at the hospital, and my dosage was reduced.

I am afraid of contracting COVID-19. Additionally, the COVID-19 pandemic affected my family’s economy since my husband lost his job and I was not able to afford healthy food. My disease complications increased with symptoms of high blood coagulation, chest pain, and breathing complications.

I call for the government to make flexible policies that help people living with cardiovascular diseases specifically on transport, to access medicine and treatment, enough medicine, and financial support. 

Blandine Furaha Umutonis' Story

Disease: Asthma

My name is Blandine Furaha Umutoni, 21 years old girl who lives in Musanze - Rwanda, and I have been living with Asthma for 18 years.

First of all, it was not allowed to go to the hospital without a permit, so my parents were the ones to request permission. It took me a long time, and the disease complication was getting too serious because of the delay. When we got permission, we met traffic police and stopped us, which affected me so badly.

I have been taking the treatment and medicines from Polyclinique La Medicale, known as Dr. Kanimba Hospital in Musanze, before and during the COVID-19 pandemic. There is no significant change except the shortage of medicine where one Pharmacy has the treatment only in the whole Musanze town.

Transport was one of the significant challenges, especially when I had Asthma complications. It took me between 10 to 15 minutes before the pandemic to reach the hospital, but around 1 hour during the pandemic.

COVID-19 has affected my family’s economic status, for my mother lost her job. Also, I am worried that if COVID-19 stays like this or increases, there would be a financial crisis. I think there would be a big impact on Rwandans. For instance, we are not studying, and many people lost jobs that were supporting their families. 

I think that getting the vaccine and vaccinating all people can bring life to normal as before the pandemic.

I recommend increasing the number of Hospitals with Asthma treatment and medicines countrywide. For that reason, a person with serious complications can get urgent treatment. When I use a Nasal Spray, I might come to Kigali to get it. Therefore, there would also be a higher availability and accessibility of medicine.

Elias Nambajes' Story

Disease: Kidney Disease

I am Elias Nambaje, a 52-year-old man who lives in Kigali, and I have been living with kidney disease for 15 years. I am a member of the Rwanda Kidney Organization.

One of my main challenges is that community-based health insurance doesn't cover the high treatment cost, and the situation became worse when Covid-19 affected my income. For instance, dialysis treatment requires almost Rwf1 million per month and for patients with transplanted kidneys, it requires about Rwf150,000 per month to buy drugs which is unaffordable. This cost is not covered by community-based health insurance which is used by many vulnerable Rwandans.

I faced other challenges such as the lack of medicine during the total lockdown when getting a car to go to the hospital was difficult. Sometimes, I traveled and traffic police stopped me even without checking my medical document. Also, there is an increase in the price of medicine where a tablet of Rwf1,000 raises to Rwf1,300. You understand that it affected our life. That combined with unemployment means that we can’t pay medical bills.

People living with NCDs also need healthy food, but their income was affected by the pandemic. I have a family to take care of, so I reduced the number of daily meals to adjust the family budget so that I can save money for getting treatment.

I am worried that my low immunity could increase the chance of being infected by COVID-19. However, following all preventive measures is the best option to stay free from coronavirus infection.

In society, some people think that the life of a person living with NCD has ended, and he/she is just waiting to die. This is wrong because he/she has the ability to do great things to improve the standard of living.

The community-based health insurance should cover the kidney disease treatment costs so that the money spent on treatment would help to improve the standard of living.  Dialysis and drugs are very expensive, and the government should subsidize the cost