REPORT
LAUNCH OF NAIROBI RHD PATIENT SUPPORT CLUB ON 8TH
MARCH 2014 AT THE SCHOOL OF MEDICINE, UNIVERSITY OF
NAIROBI, KENYA
Prepared by: Dr Duncan Matheka and Dr Laura Musambayi
Corresponding email: [email protected]
Introduction
Rheumatic heart disease (RHD) is the most common acquired heart disease in children (common age
group is 5 to 15 year olds) in developing countries.
Over 15 million people suffer from the condition
globally, resulting in about 233 000 deaths annually.
RHD is a chronic heart condition caused by
rheumatic fever – whose main symptoms include
fever, muscle aches, swollen and painful joints, and
in some cases, a red rash. Rheumatic fever is as a
result of an untreated strep throat that is caused by
bacteria called group A streptococcal (strep)
infection. Overcrowding, poor housing conditions,
undernutrition and lack of access to healthcare play
a role in the persistence of this disease in developing
countries. Despite having been eradicated in Europe
and North America, RHD still imparts significant
health and economic burden in developing countries worldwide. The irony being that it is completely
preventable, and easily controlled if (Streptococcal) sore throats are detected and treated early.
RHD is closely associated with poverty and poor quality medical services, and most of the affected
patients are not able to access medical services in a timely or effective manner. They often present
for care with advanced disease and complicating comorbid conditions. Once initiated on treatment,
most patients are lost to follow up, usually until the disease is in its advanced stages, when little or
no intervention is possible. This leads to the high mortality rate observed in patients diagnosed with
RHD.
RHD requires specialized care, which in Kenya, is only accessible in Nairobi and a few urban centres
across Kenya. Even in such places, availability of services at public hospitals is limited due to
inadequate numbers of cardiologists or lack of necessary diagnostic and treatment facilities.
Furthermore, widespread lack of awareness and accurate information about RHD is another reason
why prevention is rare and many RHD cases are detected when it is too late to treat effectively.
There is a role for urgent promotion of multi-sectoral holistic healthcare in Kenya to ensure early
diagnosis and affordable access to health services for those at risk, so as to alleviate this preventable
burden. RHD Family Support Clubs are a great way of promoting holistic RHD care in Kenya.
RHD Support Club Launch in Kenya
Kenya launched its first RHD Patient Support Club on Saturday 8th March 2014 at the School of
Medicine, University of Nairobi. At the club launch, 11 RHD patients and their families, as well as
policy makers, professional organizations, NGOs, media, private sector, universities and the
international community, were represented – all with RHD patients and their families as the key
focus.
The club has adapted a person-centred model that has been effectively used by CLAN (Caring and
Living as Neighbours - an Australian NGO) to improve quality of life for children and adolescents
living with a range of chronic health conditions in low-income settings in the Asia Pacific region.
CLAN utilizes a rights-based, community development framework for action, and focuses
multisectoral, internationally collaborative action on five key pillars seeking to maximise quality of
life for all children living with chronic health conditions in resource-poor countries of the world:
(1) Affordable access to medicine (monthly penicillin) and equipment (echocardiography)
(2) Education (of children with RHD and their families, health care professionals, policy makers and
the national and international community), research and advocacy
(3) Optimal Medical Management (through primary, secondary and tertiary prevention)
(4) Establishment and development of RHD family support clubs
(5) Reducing financial burdens and promoting financial independence of families living with RHD.
1. Access to Affordable medicine and equipment
Medication and echocardiography for RHD
patients is inaccessible in Kenya both
spatially and financially. Echocardiography
at the cheapest public hospital in Kenya
costs USD 60. For quarterly visits, a patient
pays USD 240 per year, in a country where
19.7% of the population lives in absolute
poverty (on less than a dollar a day). Even
so, not all public hospitals have
echocardiography machines nor the
cardiologists to manage the condition once
a diagnosis is made.
Since the children attending the support group meeting are at different stages of the Rheumatic
Fever/ RHD continuum, it was necessary to establish the baseline status of each patient. Thanks to
Dr. Christine Jowi, all the children present were able to receive free echocardiography. Every child
was then given a report of the echocardiography results for comparison with follow up
echocardiography findings, which will be done for free every year, courtesy of the support group.
We will use a strategic approach to improving access to medicine is a three-pronged affair: first with
humanitarian aid on a short-term basis whilst longer term access is secured; secondly registering the
drug in country and ensuring it is locally available; thirdly getting the drug included on the national
insurance scheme so it is affordably available. Plans are underway to secure the support of
pharmaceutical companies in order to provide the affected children with Benzathine Penicillin at
subsidized or no cost.
2. Education, Research and Advocacy
It was a great opportunity for all those present to acquire or refresh their knowledge on Rheumatic
Fever and RHD and their relationship with the ‘Strep’ sore throat. These talks were presented by Dr. Jowi (Paediatric Cardiologist and Club Patron), Professor Gerald Yonga (Chairperson, Kenya NCD
Alliance), Professor Elijah Ogola (Cardiologist, Lecturer University of Nairobi and Vice Chair Pan
African Society of Cardiology - PASCAR), Elizabeth Gatumia (CEO, Kenyan Heart National
Foundation), Sr. Nyabera (Nurse-In-Charge, Mater Hospital Cardiology Department), Dr. Duncan
Matheka (Club Coordinator), Dr. Laura Musambayi (Club Assistant Coordinator) and Sam Mbunya
(representing Dr. Ahmed Kalebi, Lancet Kenya).
The main emphasis was early identification of this sore throat, differentiating it from a viral sore
throat and its optimal treatment with the appropriate antibiotic therapy. Speaker after speaker
encouraged the families to be a source of information about sore throats, Rheumatic Fever and RHD
for the community.
"We need to treat approximately 500 patients with RHD, but we can only handle about 50 open
heart surgeries locally due to resource constraints." stated Prof Gerald Yonga, Chair Department of
Medicine at the Aga Khan University Hospital. Prof. Ogola stated that RHD is paradoxical since it is
very expensive to treat requiring monthly injections and sometimes surgery yet affects the under
privileged the most." He sighted efforts by the Cuban public health system in improving living
conditions and therefore reducing the prevalence of RHD. As an official of the Pan-African Society of
Cardiology (PASCAR), he confirmed PASCAR’s commitment towards the elimination of Rheumatic
fever and RHD.
The chairperson of Kenyan-Heart National Foundation, Elizabeth Gatumia, presented on the
preventive programs they conduct in Kenya including seminars, training of school going children,
planting kitchen gardens for nutritional support, medical camps, among others.
The international community sent goodwill messages, most notably from World Heart Federation,
CLAN (Caring & Living as Neighbours), Positive Aid, Young Professionals Chronic Disease Network
(YP-CDN), NCD Free, NCD Child, partners from 3 Rwandan NGOs, Rheumatic Heart Disease Evidence
Advocacy communication Hope (RhEACH), RHD Australia, among others.
Every member of each family was issued with both English and Swahili translations of an educational
pamphlet. To ensure the information from the pamphlets is assimilated, the families were also given
an interactive newsletter with puzzles and fun pages for the children to fill in.
To facilitate further research into Rheumatic Fever and RHD, the families agreed to fill a volunteer
administered questionnaire. The questionnaire sought to assess, among other things, the burden of
the condition to the families, the main worries of the families, the common presenting symptoms,
the most likely health personnel to make the diagnosis and availability of treatment and follow up
modalities once a diagnosis is made. The results of the study will be published and circulated within
the local and international health networks to enable placement of better prevention and
intervention strategies.
3. Optimal medical management
Children with Rheumatic Fever and RHD tend to accumulate missed days of school especially when
the disease is poorly controlled. The symptoms of the disease are made worse when the patient
does not observe proper nutrition, dental hygiene and rest, all of which are a challenge for growing
children, the most affected by the condition. The parents of these children were taught how to
ensure these three main aspects are continually addressed.
There was a question and answer session during which all the attendees had their questions
answered and their concerns addressed by the able cardiology consultants present. Several myths
on RHD were demystified.
Dennis Munene, the success story of the day, was a 24 year old nursing student in the University of
Nairobi who shared his struggle with Rheumatic Fever and eventual success. Despite being
diagnosed with rheumatic fever in high school, keenly followed through with his treatment for 8
years and as a result of regular follow-up, he hasn't developed other complications and his last
echocardiogram (heart ultrasound) in November 2013 reveals normal heart function. Despite having
to keep up with the monthly appointments, financial constraints and missing out on his favourite
sport (football), the then 14 year-old managed to pass his exams and join the University of Nairobi.
He encouraged the children to remind their parents to take them to hospital for their monthly
injections to prevent development of complications.
4. Encouragement of Family Support Group Networks
The support group model works on the premise that the affected families are unified by the
similarity of challenges presented by having a child with Rheumatic Fever or RHD. However, the
patients are at different stages of the disease: those awaiting surgery and those who have already
had surgery. The support group therefore provides the families with opportunities to draw strength
from one another at whatever stage of the disease they are. There was interaction among the
families - Those waiting to go for surgery were encouraged by those who have received surgery.
The group members mingled well. Unfortunately, nine of the invited families were unable to attend
as the children had been taken ill in the week preceding the meeting_- a clear message of the
dynamism of the disease. Of the 11 families represented, 5 had their children missing (either
because they were very sick or in hospital too) - and the guardians and parents represented them.
The members exchanged contacts so that they could communicate with each other regularly. They
also agreed to update the club co-ordinators on the childrens’ status every fortnight or sooner, as necessary.
We are exploring around sending text messages to families regularly through a mobile based
platform, since all the families present during the club launch had access to a mobile phone. The
mHealth platform will be used to send updates, educational messages and details of upcoming
events to families.
5. Alleviation of Poverty By Reducing Financial Burdens
In the short term, by ensuring families have access to healthcare, financial burden will be alleviated.
Various speakers emphasised the need for the patients who are still in school to put in more effort in
their academics despite the rigors of illness so that they don’t exert further financial burdens on their families. Families were encouraged to seek national health insurance.
The families travel expenses to the club meeting were reimbursed at the end of the launch. Plans are
underway to find ways to help families to find a pathway to financial independence. This will help
them better take care of the patients’ health. Way forward
To ensure sustainability several approaches will be used including:
a) Funding - longer term, there will be engagement of private sector, public and private partnerships,
and multi-sectoral engagement so the entire burden doesn't fall on the health system.
b) Capacity Building - In addition to a focus on strengthening existing health systems to promote
sustainability, it is worth noting that in HICs all chronic conditions have support networks in place
already (eg American Cancer Society, the JDRF for Diabetes Networks, Multiple Sclerosis Society,
Australian Down Syndrome Association etc). However, such networks are not well established yet in
LMICs, and in particular, by virtue of the fact RHD exclusively affects the poorest and most
marginalized. The capacity of the RHD Community in the past to initiate and maintain support
networks and clubs has not been strong, so by investing in the RHD Community, we are increasing
their own capacity to drive change in future.
c) Youth Engagement and Empowerment – With so many young people as members of the RHD
community, there is investment in these young people and there is a focus to help them drive
advocacy efforts in the future. They will be a powerful vehicle for change and advocacy.
d) Community Development & RHD – There are plans to help strengthen the capacity of the RHD
Community as an organisational vehicle in future, and over time develop their logo and website.
e) MHealth - We are exploring around sending text messages (updates, educational messages and
details of upcoming events) to families regularly through a mobile based mhealth platform, since all
the families present during the club launch had access to a mobile phone.
Conclusion
Support clubs offer material, moral, and psychological support within a cost-effective, strategic,
sustainable, health system strengthening, multi-disciplinary approach. Successful engagement of a
broad network of national and international multi-sectoral organizations around the Kenyan RHD
support club launch of 8th March 2014 established the Kenyan RHD Community as a visual hub for
ongoing person-centred health care in the country. The many and varied stakeholders engaged
around the RHD club meeting took up roles to support and work in partnership with the RHD
community over the longer term, to ensure no affected child will: go without their monthly injection
of penicillin; be lost to follow-up; miss out on education due to this disease; have their life cut short
because they cannot access medical services; or suffer unnecessarily because of lack of
understanding of the best ways to manage RHD. Moreover, it offers an impetus for more sustained
national action to reduce the prevalence of RHD in Kenya.
Early indications suggest support clubs as modelled in the Asia Pacific region have potential for
empowering families and communities in Kenya to engage with a broad range of partners around a
united vision of improved quality of life for children who are living with RHD. Moreover, the club
offers the members an opportunity to advocate for their needs collectively, while encouraging and
supporting each other.
Acknowledgements
Volunteers, speakers and partners: The launch of the RHD Club on 8th March, 2014 was an all-round
success mainly due to the hard work of the club coordinators (Dr. Duncan Matheka and Dr. Laura
Musambayi), with the help and support of their mentors (Dr. Kate Armstrong and Dr. Christine Jowi),
as well as the speakers and partners (Caring and Living As Neighbors (CLAN) - Australia, Frenny Jowi
– BBC Africa, Golden Platter, Happy Kidneys Kenya, Kenyan Heart National Foundation, Lancet
Kenya, Kenya NCD Alliance, Musart Productions, POSITIVE AID, RhEACH, World Heart Federation,
The Mater Hospital Nairobi, and the University of Nairobi. We are also grateful to the young doctors
who volunteered to assist in the registration and direction of patients, as well as filling in of the
questionnaires and general smooth running of activities during the launch - Drs. Daniel Mutonga,
Eric Irungu, Georgina Magoma, Mellany Murgor and Solomon Mwenda.
Financial: We are grateful to Caring and Living As Neighbors (CLAN) – Australia, for the financial
support towards the launch of the Club.
SPONSORS AND PARTNERS