People with Sickle Cell Disease's Best care in Rwanda

Sickle Cell disease  (SCD) is caused by a single base mutation that takes place in gene coding for hemoglobin beta chains leading to the affected person to born with red blood cells that sickle when ever they are exposed to low oxygen, it affects all organs because when they sickle they can not pass through small capillaries leading to severe pain (Ford JD, Grasso DJ, Jones S, Works T, Andemariam B. Interpersonal Violence Exposure and Chronic Pain in Adult Sickle Cell Patients. J Interpers Violence. 2020;35(3–4):924–42) , anemia because of hemolysis. All organs are affected because blood circulate in all parts of the body and the child start suffering just after 6 months of age, if not cared, most of them will die before age of 5 . 

SCD is common in Sub-Saharan Africa because it is directly proportional to malaria that is more common in East Africa and this made Tanzania, DRC and Uganda be among top five countries with high SCD worldwide.

According to the ministry of health, many Rwandans who are sick are managed by community health workers, health posts and health centers and those health facilities don't have doctors who have any information about SCD. Other few that reach hospitals also can not get hematologists as the country has only 3 hematologists. This has made sickle cell disease still be a mystery in the country and most of parents who have children with SCD won't even know what they are suffering from, they are in the community suffering and obviously will their life expectancy is very small like many years ago when the care of SCD was poor worldwide. This is confirmed by the fact that we don't have the prevalence of patients with SCD in Rwanda and carriers as it is in other neighbouring countries 

The life of people with SCD have increased recently after the discovery of the use of hydroxyurea among patients with SCD. Currently, the science have found that if a child of SCD is:

1. Diagnosed during one year of life, started on antibiotics prophylaxis and malaria prophylaxis, complete all vaccines including peumococcal vaccines

2. Received hydroxyurea as soon as possible,

This child will live with few crisis and reach the normal life expectancy as the general population as it is being done in developed countries.

Our solution is based on " Quality assurance" where will:

1. We will train all CHWs, and all health providers in health posts and health centers of the country about symptoms and signs of SCD, main symptoms are painful crises in all parts of the body, anemia and jaundice so that they will be able to suspect it at any child

2. Start the quality assurance application called "E-Batsinda" installed at all health centers and health posts on local network that will not necessitate internet network to function where we will put the indicators in the application and indicators will be those symptoms of SCD (Once a child consult a CHW, health post or health center with the symptoms and signs of SCD mentioned, the provider will automatically enter in the app and mention which indicator (symptom/sign) is present, the main data base and controller will be at the centre of the NGO where all reported children will be seen directly by experts team made by hematologists and lab technicians who will then organise the visit of reported children for consultation and taking blood sample for testing if the child has SCD.   All children confirmed to have SCD will be registered to be linked to the health center where they will be followed and the created application will help few hematologists the country has to reach all children found to have SCD and consult them online together with a health provider at health centers and posts, those health providers will keep to be mentored also via the application. 

This solution will serve children with SCD especially undiagnosed ones. These children are suffering and their parents being looking for traditional healers as no help they found at health facilities. It is expected that Rwanda has 135,000 people with SCD, but few are known. Their live will be improved because they will:

1. First of all diagnosed earlier (during childhood) and they know what they are suffering from and be counselled correctly to know how to behave and followed accordingly

2. They will start automatically the current gold standards management and follow up that is to start antibiotics prophylaxis, malaria prophylaxis, complete all vaccines including pneumococcal vaccines and start on hydroxyurea. This will prevent the painful crises and all other crises leading to frequent hospital admissions, blood transfusions.

Thus, the quality of life of children/Rwanda with SCD will be better, morbidity and mortality be reduced much and therefore their life expectancy and quality of life be like other Rwandans without SCD

our organisation is made by health professionals from different specialities in order to help Rwandans reach the primary health care because we knew that Rwanda has few medical specialists in general that are found in referral hospitals only and to reach them requires to have moved among many facilities and took time and even more can not manage to get them. The executive director of our organisation is hematologist (specialist of all blood diseases especially SCD) and expert in SCD as he did his specialisation in Tanzania where the care of patients with SCD is advanced compared to Rwanda. His every day work as hematologist in teaching hospital is consultation of patients especially those with SCD, he knows the challenges in the field and proposed solutions that made him making a whatsapp group with patients or parents of children with SCD that he follows in order to keep helping them on daily basis and also help in keeping identifying the children with SCD. Dr. Uwizeyimana is also working at Kigali University Teaching Hospital that is one of 4 hospitals in the country having tools to diagnose SCD and he has contributed in diagnosing many patients with SCD, announce the diagnosis and counselled them. He is the most placed in Rwanda to know what is needed when it comes to SCD.

As the organisation, we have a SCD program and we thought to have this program because we knew that SCD need priority in Rwanda. through our executive director, the members of this program have been trained on SCD and so far have implemented two projects that were raising awareness of SCD among Rwandans and we have reached number of patients with SCD and we are linked with them. Our NGO also have partnership with laboratories able to conduct SCD diagnosis and health facilities able to manage well the patients with SCD.

The solution is well designed and all technical team needed has been reached and put in place including medical professionals, IT experts with expertise in health programming, some people with SCD and some health leaders in the country. The budget for the pilot project that will involve the Eastern province only is 110,000 USD and we have only secured 10,000 USD form local fundraising; we need the challenge to support us with 100,000 USD for the pilot project to start. We believe that after implementing the pilot project in one of four provinces of the country, we will use the data to reach the ministry of health and other health donors to fund the scale up of the project on the entire Rwanda and ensure the sustainability of the project.

This solution is very innovative because it is going to bring the best care of patients with SCD that they were not getting and exposing them to morbidity (disability) and mortality (most die before age of five). SCD has been given less priority worldwide especially in African countries; within 20 years ago, scientists from developed countries have discovered a-lot including use of hydroxyurea, bone marrow transplant and gene therapy, this has led SCD being a shifting from death sentence to manageable disease and even curable respectively. Unfortunately, all those facilitations don't reach Rwandans that have SCD because they are not known and their management is still inadequate.

Our solution is going to let patients with SCD be diagnosed on time and start current gold standards management of patients with SCD as those in developed countries. This will improve the quality of life of patients with SCD as they will be in their usual business instead of being admitted at hospitals, there will be less morbidity and mortality be minimised; The life expectancy of patients with SCD will be like those without as it is in other developed countries.  This solution will keep serving the big number as people with SCD are keeping to born and surrounding countries/regions can also come to benefit from our initiative as also care of patients with SCD is still low in  Democratic Republic of Congo (DRC), Uganda and Burundi

                               IMPACT GOALS FOR ONE YEAR:

25,000 patients with Sickle Cell Disease (SCD) will have been identified in the community and started on current gold standards management:

This will be done through:

1.  Training of 15,000 community health workers from Eastern province of Rwanda and 20,600 nurses from health centers and posts of Eastern province on SCD especially symptoms and signs

2. E-Batsinda application will have been installed and children with symptoms and signs of SCD will have been reported to the expert team made by hematologists and lab technicians. The diagnosis will be done and follow up started

                              IMPACT GOALS FOR  FIVE YEARS:

135,000 patients with SCD will have been identified in the community and started on gold standards management. sustainability will be insured 

This will be done through:

1. Training further  45,000 community health workers from the whole country and 41,350 nurses from health centers and posts of Rwanda on SCD especially symptoms and signs

2. E-Batsinda application will have been installed in further 3 provinces and city of Kigali health center and posts, children with symptoms and signs of SCD will have been reported to the expert team made by hematologists and lab technicians. Regular diagnosis and follow up will be done to the entire country. 

3. The data will been shared with ministry of health through an advocacy meeting to discuss on the matter and how the ministry will help in sustainability.

We use pre and post test evaluation method where set indicators will be measured before we start the activity and then at the end. For example of some indicators that we will measure:

A. Increase the number of patients with SCD identified and have access on better management and therefore reduce morbidity and mortality from SCD crises. 

Means of verification:

1. number of new patients with SCD reported in the system

2. percentage of patients with SCD diagnosed (identified) from reported ones

3. percentage of patients with SCD on regular follow up through E-Batsinda application

4. number of patients with SCD who got painful crisis during the project timeline

5. number of patients with SCD who got disability and/or died from SCD crises during the project timeline

B. Patients with SCD will have improved quality of life and perform their work without interruptions due to frequent hospital admissions

Means of verification:

1. number of patients with SCD who missed their usual work because of SCD crises and number of days they missed per month

2. number of children with SCD who missed their schools because of SCD crises per month

With the above examples we will get the baseline data and then set monthly in order to assess the achievement of our objectives.

• Our first activity will be "training of Community Health Workers (CHWs) and nurses from health centers and health posts about sickle cell:

This activity will make health providers at community level be aware of the condition that is known by hematology specialists only whereas they are scarce; after the training, trained health providers will be able to identify from others someone who present to them with symptoms and signs of sickle cell disease  and sick for further help for diagnosis and management

• The second activity is "E-Batsinda software use" 

This is the software that will link trained health providers and hematology specialists where after they identify a child with symptoms and sings of SCD they will enter in the app and automatically reach the the team made by hematologist and specialised lab technician to come and consult her and take samples for testing for SCD. Those found to have SCD will then been linked to to nearest health facilities to be followed where if attending health provider get any concern will automatically use the software/app to inform the specialised team and they help also via the app. The software will be installed on local network at health centers and posts where they won't need internet to function.

After this activity, many patients with SCD will be diagnosed and get proper treatment and follow up that will improve their quality of life, reduce morbidity and mortality among patients with SCD in Rwanda 

Our technology is a software that will be installed on local network where health centers and posts are and then they computers will have it. Almost all health centers and posts in Rwanda have electricity but not all have internet connection, that is why we will use local network that will not need internet connection. With the software, health providers at community level (community health workers and nurses at health centers and health posts-reminding that they the ones providing more of primary health care to maximum Rwandans) will be able to report to specialists in the field of SCD (hematologists and lab technicians) any child/patient they suspected to have SCD from the training they will have participated in. They will simply enter in the software symptoms and signs the child has and then the expert team see automatically on their computer who will analyse if the child has significant symptoms and signs and then decide to go to consult her/him and take samples for testing for SCD at one of two public laboratories able to make the test in Rwanda. In summary the software will link children/patients living in the community undiagnosed to have the condition and are suffering there considered as having mystery disease being sent most of them to the traditional healers to few experts in the field of SCD the country has to make diagnosis and get proper follow up that will help them to be free from crises related to SCD, frequent hospital admissions, schools/work interruptions, reduce more morbidity and mortality and therefore increase their quality of life and life expectancy. 

Community health workers (CHWs) at the community and nurses in health centers and posts.

Community health workers are trained people, three per village. They are the ones that sick people in the village see before going to either health center or posts. among of their role is the patients orientation and management of some disease like malaria. As they are the ones who see most of children less than five years first who are sick, if they found any child with symptoms and signs of SCD as per training, they will enter the child with those symptoms and signs (indicators) in the application. They are normal volunteers but given some money by the ministry of health when they participate in the training. Our solution will give them per-diem during training. 

Nurses working at health centers and post are the ones who do consultation of all patients who attended their facilities as they don't have doctors. They will be also reporting and child with symptoms and signs of SCD. They are employed and paid by the ministry of health. Our solution will give them per-diem during training.

Besides money as incentives that the health providers get, but moral incentive will be very important because they will be very happy to see their patients well diagnosed and cared very well.

Our organisation is made by diverse group of youth whose their thirsty is to make sure Rwandans receive the best of health care they can receive. It is mainly made by health professionals including (1) medical doctors in different specialities such as hematology, (2) nurses and midwives, (3) public health and epidemiology specialists, (4) finance, project management, administration specialists. This diversity of expertise among our organisation have made us strong because in any area we need staff, we get them from our members who are committed already to beside their usual work to contribute strongly in the organisation. Our organisation also have gender balance because 49% of members are female and 51% are female. As the team is with different expertise, we put our force together equitably including everyone wanted according to the contribution we are looking for a particular activity/project. 

Our project will utilise technology in order to provide health services to people with Sickle Cell Disease (SCD) in Rwanda with emphasize on diagnosis (earlier identification) and better management of patients with it.

Our key direct beneficiaries are children below age of five born with SCD and are not yet diagnosed. They are suffering much in the community and most of them die before age of five because of the SCD.The service we will:

1. train the local health providers about SCD that are their sure staff attending them whenever they suffer anything
2. do test that must confirm or rule out SCD for them
3. provide them best management of SCD among them

These services will be provided through creating a software/application that will be installed on local networks at all health centers and health posts of Eastern province so that after the community health workers (CHWs) and nurses are trained on symptoms and signs of SCD will be able to report through the system which ones any child present with, the expert team made by hematologists and lab scientists will see the report automatically and analyse those that need consultation and diagnostic tests, they will make an outreach to review them and take sample to confirm if have SCD. If SCD is confirmed the child will be informed and given a nearest health post/center to be followed there with trained nurse and then if there is a need of help from experts will then use the system again to reach out the hematologist and be helped directly without requiring transfer to tertiary hospital that would be costly, taking time and sometimes even not possible because they are busy/full.

They need much of these services because SCD is still considered as mystery in Rwanda both among health providers and population. That is why children with SCD are in the community undiagnosed and suffer much with much of morbidity (disability) and mortality because most of them die below age of five. They need to be diagnosed and start on treatment as earlier as possible to live free from complications leading to morbidity and mortality. 

This project we are applying for here is a pilot project that will take only Eastern province, after one year of activities, we will have enough data and held an advocacy meeting with both Ministry of Health and Rwanda Biomedical Center (RBC) where we will show them which number of patients SCD we identified and also how their life changed positively compared to before they started on follow up. This will show them the reality regarding SCD in Rwanda and ask them to fund our project to expand to the entire country and also continue where we have already started in. They may decide to fund the project or take it over and continue the activities, which ever best fitting them will be appreciated because our aim is to see patients with SCD are identified on time and cared properly in Rwanda.

We are going to give two examples where the project we have implemented become sustainable very well.

1. In 2014, we have implemented a project that wanted to introduce bubble Continuous positive airway pressure (b-CPAP) in health facilities of Rwanda in order to reduce neonatal mortality caused by difficulty in breathing. The project had been funded by Child Health Foundation (CHF) that is US based charity organisation. Because of the success of this project, CHF have refunded it five times until now we are still expending the project. 
2. Since 2012, under funding of MTV-Staying Alive Foundation, we have implemented a project that was targeting HIV/AIDS education among different groups starting from prisoners. Because of how the project was successful, we have been refunded 4 years and then seen that there is a need of the project to continue. We planned with MTV-SAF and decided to fund a social enterprise that would bring the income that will be used in those HIV/AIDS. It worked very well and the project got well sustained.