Tech for haemophilia patients identification and management

Identification (diagnosis) and management of haemophilia in Rwanda is still a challenge. Haemophilia is X-linked inherited disease where people who have it lack either clotting factor VIII or IX making them to have haemophilia A or B respectively. People with haemophilia bleeds easily and most of them get massive bleeding before age of five leading to disability or even death if they were not identified start management on time. The ideal procedure would be that any child with bleeding tendencies must be tested to know if s/he does not have haemophilia. The treatment is easier because someone found to have it must be injected the clotting factor s/he miss regularly and in that case s/he will never bleed, those who have developed inhibitors will also have choice of emicizumab for haemophilia A.

Haemophilia is a rare disease because according to the WHO statistics, we espect 1 in 5000 male births to have haemophilia A and 1 in 20,000 births to have haemophilia B. This means that Rwanda expect to have 1625 people with haemophilia. However, the Rwanda Haemophilia Federation has only registered 50 people with haemophilia and they are the only ones who are accessing treatment. This means that most of the children are in the community unidentified and therefore most of them die before age of five. The reason of being unidentified is because the biggest number of Rwandans, when sick are managed by community health workers, health posts and health centers. Those facilities have no medical doctors to suspect a rare disease like haemophilia, this will make those with symptoms be treated for other conditions. 

Another challenge is the access of clotting factors, the patients with haemophilia are evenly distributed to the country but only Kigali University Teaching Hospital (CHUK) has the clotting factors donated from World Haemophilia Federation and patients get them for free but they have to travel to CHUK in order to get the clotting factors, this is long way for some coming from far and become more difficult when they have symptoms

Our solution will be to start a software that will be on local network in order to do not need internet to function and be installed on computers of 50 health posts and 50 health centers. The software will have indicators that are symptoms and signs of haemophilia. The nurses and community health workers (CHWs) will be trained on symptoms and signs of haemophilia such as excessive bleeding after clumping the umbilical cord, after circumcision, after teeth extraction after the child have fallen down ect. They will then be asked to whenever they find a child with those symptoms check those indicators (symptoms and signs) and the report will directly reach the expert team made by haematologist and lab technicians who will go to review the child and take blood samples for diagnosis. Kigali University Teaching Hospital has a machine that make the diagnosis and it is one of only two hospitals able to make that diagnosis, we will partner with them so that the samples will be tested there. Those who are confirmed to have haemophilia will be automatically registered under Rwanda Haemophilia Federation and get the identification card that help them to access clotting factors and be served as priority once they present to the hospital with bleeding tendencies. Rwanda has only 4 haematologists able to manage well haemophilia, use of technology is the only best way to reach the whole country.

The software will be used by the health facilities to order clotting factors from CHUK and report how they are used so that the distribution of clotting factors will be decentralised to targeted health posts and health centers so that people with haemophilia will access clotting factors very closer to them and help those with active bleeding get helped before they get more damage including even death.

Our solution will improve diagnosis and management of people with haemophilia, reduce morbidity and mortality of haemophilia and therefore improve the quality of life of people with haemophilia in Rwanda

Our solution will serve all people with haemophilia A and B in Rwanda both early known and those not yet diagnosed to have it and still in the community suffering there. According to the statistics we expect to have 1350 people with haemophilia A and 300 people with haemophilia B. But because of the challenges explained above only 50 are known in the whole country and they are the only ones getting help of treatment and other related needed management. As explained above people with haemophilia are underserved in the following way:

1) maximum of them are not yet diagnosed and they are in the community suffering from condition still considered as a mystery by their parents and  community

2) the clotting factors are found at only one hospital located in capital city and access on it is limited by the long distance you have to walk in order to get and become almost impossible if you already have active bleeding

our solution will create software and install it on computer of health posts and health centers using only local networks instead of internet to make it cheap, the software will:

1) be used by local health providers at community, health posts and centers to report to the expert team the symptoms and signs the patient presented in order to come to review the patient and take sample for diagnosis at one of only two hospitals able to make that diagnosis in the country. The diagnosis will be made and be registered in the Rwanda Haemophilia Federation to get helped/follow up as other patients 

2) decentralise clotting factors to selected health posts and health centers where they will be ordering through the system the clotting factors and be reporting how they used the previous ones. This will help health posts and health centers that are more closer to the patients having clotting factors and provide to patients whenever needed

As we have explained above Rwanda has extremely low number of haematologists able to diagnose and manage well haemophilia patients, this has made this area to be not well explored for long time has other conditions. Our technical team is made by one haematologist and two trained laboratory technicians able to make the diagnosis and follow up of patients with haemophilia A very well. The team has also other specialists that are IT experts, financial experts, project management experts, leadership ect. 

Dr. Gilbert Uwizeyimana who is the haematologist at Kigali University Teaching Hospital and executive director of our organisation is a member of Rwanda Haemophilia Federation and he has conducted so many consultancy to educate people with haemophilia who are registered in the federation about the haemophilia, how they should behave and has contributed much in the wellbeing of people with haemophilia because he is one of team actively diagnosing and managing patients with haemophilia at the hospital. He has opened his phone number to be called by anyone with haemophilia who have any concern to give him/her advices and many call him and get helped.

From his experience in the federation, is how we knew challenges people with haemophilia face in Rwanda and how they can solve because we are in touch with them and have decided to work together in order to alleviate challenges.

the barriers that made us to apply on this challenge is financial.

We have made a budget of this pilot project that will target 100 health facilities (50 health posts and 50 health centers) and we have found that we need at least 160,000 USD, we have started the fundraising and have secured only 10,000 USD from local fundraising that is the one we currently use but fortunately we have found that the challenge can provide up to 150,000 USD and this will make our budget found and able to continue the implementation of the solution. 

Our solution provides new and significantly improved approach to the haemophilia in Rwanda because it will use technology to reach undiagnosed patients with it and also help them to access treatment easily. Because haemophilia is a rare disease, it is also not known by people including even maximum of health providers; the disease is itself called "mystery" in the community; secondly,  the 1625 Rwandans expected to have haemophilia are not in single sector but distributed in all villages of the country. Thus, in order to reach them, there should be a specific program targeting them, giving them priority to be diagnosed and treated and to do so, we need in the field that are usually in tertiary hospitals only and the facilities to diagnose and treat them; the only and best way is to use the technology in order to make easier people with haemophilia be diagnosed and treated. That is what our solution will do because through the software created, people with haemophilia will be able to be reached by expert team, be diagnosed, registered and get the haemophilia card that will help them to be served as priority at hospitals once they have bleeding tendencies. The software will also be used by health posts and centers to get the clotting factors from the tertiary hospitals in order to help patients accessing clotting factors closer to them in order to be treated and helped once they get bleeding.

Impact goal for next one year:

By the end of one year of activities: 

1.     we will have created the haemophilia software in Rwanda, and have trained 300 health providers from 50 health posts and 50 health centers from 30 districts of the country on the haemophilia focusing on symptoms, signs and way of diagnosis. 

2.     Around 1625 people with haemophilia in Rwanda will have been diagnosed, registered by Rwanda Haemophilia Federation and given haemophilia, and started on clotting factors supplements according to what they miss either clotting factor VIII or IX.

By the end of next five years:

1625 people with haemophilia will have been sustainably on clotting factors and those with inhibitors on clotting factor VIII will have been sustainably on emicizumab and therefore morbidity and mortality from haemophilia will have been an history among patients with haemophilia.

Our solution will be evaluated by measuring using "pre and post activity evaluation method" where we will set a number of indicators before we start the activities and then continue after 3 months in order to get the changes. Examples of indicators that we will use are:

1.     Greater access on haemophilia diagnostics by Rwandans with coagulation problems

2.     Increased number of health providers in health posts and centers who know well the haemophilia and able to care well haemophilia patients

3.     Greater access on haemophilia treatment for all patients with haemophilia in Rwanda

4.     Increased number of haemophilia patients empowered, whose quality of life is improved because there is no morbidity and mortality.

Some means of verification will be:

1.     haemophilia software is created, installed in 50 health posts and 50 health centers and is running without interruption 24/7

2.     number of new diagnosis of haemophilia per month

3.     Percentage of people with haemophilia with access on clotting factors within one hour of bleeding symptoms

4.     percentage of haemophilia A people with inhibitors and have access on emicizumab

5.     number of people with haemophilia who had severe bleeding per month

6.     number of people with haemophilia who had disability because of bleeding in the joints or others body areas

7.     number of haemophilia who passed way per month

8.     number of  targeted health facilities having 24/7 clotting factors from tertiary hospitals

9.     percentage of health providers from targeted health facilities who got help through the software from expert team regarding any difficult case consultation

10.  ect.

Our solution will focus on specific activities that will provide automatic outputs and outcomes. First of all we will start by training 300 health providers made by nurses at 50 health centers and 50 health posts from all districts of the country. Those are the ones that meet first all patients in their catchment areas because in Rwanda, with the community health insurance, once you got sick, you have to start to health posts and health centers; therefore if nurses at those health facilities are not aware of a certain disease, its identification is a problem. After the training, nurses in those pilot health facilities will have necessary knowledge on symptoms and signs of haemophilia and be able to suspect it to anyone with it.

Secondary, we will start a "haemophilia software" that will be installed on local network and all targeted pilot 100 health facilities and our head office will have access on it; symptoms and signs of haemophilia will be entered as indicators and once any child is suspected by the trained nurses, will enter in the system those indicators and expert team made by haematologists and lab technicians see them. If they found reported indicators to be highly suspicious, the team will be go to the health facility, examine and take the sample to confirm or rule out haemophilia. This activity will help in identification of people with haemophilia who are in the community undiagnosed and still suffering for mystery considered disease.

Finally identified people with haemophilia will be registered by Rwanda Haemophilia Federation, get regular clotting factors according to which one they lack, and be regularly followed by haematologists as it is for those identified. Those who will develop inhibitors to the clotting factors will get access on the only treatment of it "emicizumab"; therefore people with haemophilia will access the best quality standards of care and be well managed. Thus, they will live free from bleeding crises, morbidity and mortality and their quality of life be improved. 

Our technology is "software". If anyone listen software will start to think about network prices. However, our software will be installed in the fact that it will be installed on the local network as currently all areas of Rwanda has local networks coverage. The software will be installed on computers of targeted 100 health facilities, and office of expert team at the organisation's headquarters. Access will be different because health facilities will have reporting access and our head quarter have accessing reports and way of sending a communication to all targeted health facilities. We will create a data base where symptoms and signs of haemophilia will be entered as indicators so that if a nurse at health center or post suspect any case of haemophilia will take only one minute to tick on the present indicators and then submit, the reported case will automatically be seen by the expert team who will analyse and decided how to help the reported case.

Attending nurses, after people have been diagnosed and are on clotting factors, will continue to get help from the experts in case they have difficulties in managing some cases; For example someone on clotting factors may continue to bleed despite getting enough factors; such case might be problematic to a nurse because there is much need of consultation by hematologist. Such case will be also reported using the software, get feedback automatically from the expert team on how to manage the case, management may include to conduct an outreach, consult the case and take the sample for testing if s/he has inhibitors to the clotting factors in order to be put on emicizumab. 

Our organisation is a registered not for profit and Non Governmental Organisation. We have currently 53 members in which 30 are male and 23 are female. Our organisation welcome everyone without consideration of social, cultural or any identity human differences to be our members. we have three types of members: founder members, adherent members and honorary members. founder members are those that started the organisation; adherent members are anyone who is interested to work with us, and s/he write a letter to us requesting to be a member; honorary member is a person that our organisation find potential and we write to him a letter requesting him/her to be a member. We can also have volunteers and paid staff. In all those members, volunteers and staff, we do not consider anything else except their capacity to serve our organisation. special groups like people living with disability, LGBT, discriminated people are given priority once they apply to be an adherent members. In addition to the information provided above, we have diversity and equity policy that explains everything we do on the matters. For this solution also, it will be the same where diversity, equity and inclusion will be respected to all volunteers, staff and beneficiaries of the solution

This solution's beneficiaries are 1625 people with haemophilia A and B in Rwanda and anyone who will born with haemophilia in the future. All services will be centered and targeting them in order to address problems they face. The first problem they have is difficult to get diagnosed, this is confirmed by the facts that even if Rwanda should have around 1625 people with haemophilia but only 50 are known. The maximum budget for this solution will be used to train 300 health providers from 100 health facilities about haemophilia symptoms and signs, and purchasing a software able to used by trained health providers to report a suspected case to the expert team in haemophilia who will come to examine, make diagnosis and register the her/him to Rwanda Haemophilia Federation for better follow up. Our purpose is that all patients of haemophilia get diagnosed and be registered to be well followed instead of continuing looking for traditional healers thinking they have a mystery diseases

The second problem they have is access to clotting factors in case they have a bleeding emergency. This is because only one hospital hosts the all clotting factors donated to Rwanda by World Haemophilia Federation. Another quarter of the budget for this solution will be used to make sure 100 targeted health facilities order clotting factors from the provided software and get them, and then report how they are used by reporting number of patients they have given and how they were given before sending other clotting factors. This will help patients, when they have bleeding crisis, getting their clotting factors closer to them (health centers or health posts) so that they get helped on time and prevent all complications (morbidity and mortality) related to bleeding among haemophilia patients. 

Finally, 30% of patients with haemophilia who are on regular clotting factors can get inhibitors and therefore they will not again be helped by giving the clotting factors. Fortunately, emicizumab can help those with haemophilia A. In Rwanda, there is no study yet done to assess those who have inhibitors. The remaining budget of the solution will be continued to be used to tests those suspected to have inhibitors so that they are given emicizumab in place of clotting factors. This will help them to live free from bleeding tendencies even if they have inhibitors against clotting factor VI.

This shows that the all budget of this solution will be used to implement the project that want to address problems of people with haemophilia in Rwanda and the project has been designed according to what is better and giving value to people with haemophilia in Rwanda. If this solution is implemented it will considerably improve the quality of life and life expectancy of people with haemophilia in Rwanda.

This project need to continue serving, and therefore need sustainability strategies. We will sustain the project through:

1. During all our activities and events, we will invite ministry of health (MoH) and Rwanda Biomedical Center (RBC), these are the two biggest government institutions in charge of health in Rwanda. Toward the end of the project, we will show them what we have done and how the project need to continue in the health facilities we targeted and even replicate in other health facilities that we did not reach. Our suggestion will be that they refund the project and at that time, budget will be small as software and training are already there. They will be asked to fund the project in order to manage the software at headquarter and fund the health facilities for expenses they need like transport o pick clotting factors. For replication to other health facilities also will be asked fund the organisation in order to do the same we did to the already reached health facilities.

2. Rwanda Haemophilia Federation (RHF) is nationally registered and working closely with World Haemophilia Federation (WHF). They have done great job so far because provided clotting factors for free and we are in the process to get also Emicizumab for free. We will work closely with RHF so that any case diagnosed will be registered and get a card from the federation in order to get the clotting factors as they need. Once we have managed to bring clotting factors closer to patients in order to facilitate them to get on time, help those who miss ticket fees to come to kigali, all with haemophilia will be safe. With this strategy, even if we can miss refund of the project, but diagnosed patients will continue to get clotting factors regularly.

With the organisation and services of RHF and funding opportunity from MoH and RBC, we are sure that this project will continue in the reached health facilities and be replicated to all health facilities of the country until all of them are able to make diagnosis for haemophilia and having clotting factors to provide for free as it is for malaria.

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 organization. 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 if 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.