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					                     Restoring Sight to the Children of Malawi
                     Executive Summary - Project Objectives and Activities

Congenital and developmental cataract is the leading cause of blindness in children in Malawi. Every
year approximately 120-180 children are born with congenital cataract or develop developmental
cataract and it can be estimated that there is a ―backlog‖ of approximately 600 children with congenital
cataract.

In 2008, the first year that paediatric ophthalmology services were available at Queen Elizabeth Central
Hospital, a total of only 81 Malawian children received surgery (50 boys and 31 girls). Clearly, there is a
significant unmet need.

Over the next three years, the goal of Seva Canada is to assist the Queen Elizabeth Central Hospital’s
Child Eye Health Tertiary Facility (CEHTF) to provide high-quality comprehensive eye care services for
the children in Malawi.

Specific objectives include:

   1. Increase by 50% the referrals of children to the tertiary hospital who are blind or severely visually
      impaired.
   2. Increase by 50% the number of surgeries for congenital and developmental cataracts each year
      for the next three years.
   3. Ensure that 100% of children who need post-operative refraction receive spectacles.
   4. Ensure that over 80% of children receive an IOL (intraocular lens).
   5. Ensure that all potential partners (service groups, non-eye care NGOs, eye care groups, and
      government) are educated regarding the importance of early detection and early referral of
      children with severe vision loss.
   6. Ensure 100% follow up of children enrolled in the management system.
   7. Ensure that 100% of children are encouraged to be placed in an appropriate educational
      environment.
   8. Ensure 100% two-year post-treatment follow up of all children identified through the
      comprehensive CEHTF.

In order to accomplish these eight objectives, the following activities will be undertaken:

        Complete planning sessions and training.
        Establish strategies to find children in need of surgery.
        Support the expenses related to surgery, transportation and counseling.
        Obtain paediatric intraocular lenses (approx. $90-120 each).
        Support the expenses related to spectacles and low vision services.

The cost of this project over three years is $150,000 CDN

Presently we have following commitments:

Lions Club Africa                              $50,000
Somerset Foundation                            $30,000

Total Required                                 $70,000 CDN
                    Restoring Sight to the Children of Malawi

Background
Malawi has a population of approximately 13 million people. Its per capita income places Malawi as one
of the poorest countries of the world.

According to a recent survey carried out by ophthalmologists at Malawi’s Queen Elizabeth Central
Hospital (QECH) and the Kilimanjaro Centre for Community Ophthalmology (KCCO) congenital and
developmental cataracts are the most common cause of blindness in children.

QECH is the referral hospital for the Southern Region of Malawi, which has 8 districts and a total
population of approximately 6 million people. For a population of this size, it can be estimated that there
is an estimated ―backlog‖ of approximately 600 children with congenital cataract. Additionally, every
year approximately 120-180 children are born with congenital cataract or develop developmental
cataract.

In 2008, the first year that paediatric ophthalmology services were available at QECH a total of only 81
Malawian children received surgery (50 boys and 31 girls). Clearly, there is a significant unmet need.


Treating Cataracts in Children
Meeting the needs of children with vision loss due to congenital
and developmental cataract requires different strategies, different
skills, and different funding. In particular, reducing blindness due
to surgically treatable conditions requires:
      Community-based strategies for finding children with these
         conditions. This is quite different from other broad-based
         public health strategies (ie: providing vitamin A
         supplementation to all children under six years of age).
         Finding children with vision loss requires close
         collaboration between hospitals and communities.
      Human resources with high quality technical skills to
         provide surgery for children. Well trained paediatric
         ophthalmologists, paediatric anesthetists, childhood
         blindness coordinators, and low vision technicians need to
         be part of the team providing services for these children.
      Long-term follow up of these children is required in order
         for them to receive the appropriate spectacles and low
         vision devices. Children often require new spectacles every year due to their changing vision
         needs. Pro-active approaches are needed in order to get these children back for these services.
      Good collaboration between all organizations providing health care needs for children. Most
         health workers and health care organizations are not aware of the eye care needs of children
         and yet, they can (with some education) become strong advocates for child eye health.




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Eye Care Services for Children

In 2008, a series of events led to the establishment of a paediatric ophthalmology service in Blantyre,
Malawi, which now makes it possible to provide appropriate care for children with congenital and
developmental cataract, among other potentially blinding conditions.
     Dr. Gerald Msukwa (a KCCO external faculty) completed fellowship training in paediatric
       ophthalmology at CCBRT in Dar es Salaam. Dr. Msukwa, based at Queen Elizabeth Central
       Hospital (QECH) in Blantyre, is the only paediatric ophthalmologist in Malawi.
     Ms. Tionenji Ng’ong’ola, was hired through the Childhood Blindness Research Project as a
       Childhood Blindness & Low Vision Coordinator. She was trained by the KCCO through support
       from Seva Canada. Part of her salary is also paid through support from Seva Canada.
     Dr. Khumbo Kalua established the Blantyre Institute for Community Ophthalmology (BICO) at
       Queen Elizabeth Central Hospital (QECH) with support from the International Centre for Eye
       Health; one of his goals is to build up a childhood cataract service.

Globally, it has become common practice for children to receive an IOL (intraocular lens) at the time of
surgery. This enables the child to obtain the best possible vision and to avoid having to implant an IOL
as a secondary procedure later. In 2008, because of a lack of sufficient IOLs, only half of the
children at QECH having surgery received an IOL.



Surgery Isn’t Enough
Surgery, by itself, will not be sufficient for a child
to attain good vision; virtually all children will
require spectacles and many will require low
vision devices in order for them to achieve their
full visual potential.

There are a number of steps required for children
to receive postoperative services:

    1) There must be a pro-active program in
       place to maintain contact with parents to
       ensure that they bring their children back
       for spectacles and low vision devices. As
       transport costs may be a significant
       financial challenge for many parents, it is
       often necessary to reimburse transport
       costs.

    2) We must provide spectacle frames
       specifically designed for babies and young
       children. Similar to anywhere in the world,
       children will not wear spectacles that are ―ugly‖— teasing by classmates and teachers often
       limits spectacle wearing. Accordingly, providing frames that are attractive (that are ―cool‖) is
       essential to ensure spectacle wearing. It is not uncommon for these spectacles to have to be
       changed annually. Many children also require low vision devices to assist them with schoolwork.
       In 2008, due to the lack of frames and funding, none of the children receiving surgery at QECH
       were provided with spectacles or low vision devices.

The team in Blantyre has carried out a SWOT analysis identifying specific strengths, weaknesses,
opportunities and threats that will help in the development of an overall program. They are keen to
provide a high-quality service, both improving the number of children receiving services as well as
improving the lives of children through better follow up and post-operative care.



                                                         3
Project Objectives and Activities
Over the next three years the goal of Seva Canada is to assist the Queen Elizabeth Central Hospital’s
Child Eye Health Tertiary Facility (CEHTF) to provide high-quality comprehensive eye care services for
the children in Malawi.

Specific objectives include:

   1. Increase by 50% the referrals of children to the tertiary hospital who are blind and severe visually
      impaired
   2. Increase by 50% the number of surgeries for congenital and developmental cataracts each year
      for the next three years
   3. Ensure that 100% of children who need post operative refraction, receive spectacles
   4. Ensure that over 80% of children receive an IOL (intraocular lens)
   5. Ensure that all potential partners (service groups, non-eye care NGOs, eye care groups, and
      government) are educated regarding the importance of early detection and early referral of
      children with severe vision loss
   6. Ensure 100% follow up of children enrolled in the management system and those not responding
      receive a phone call
   7. Ensure that 100% of children are encouraged to be placed in an appropriate educational
      environment
   8. Ensure 100% follow up of all children identified through the comprehensive CEHTF for two years

In order to accomplish these eight objectives, the following activities will be undertaken:

      Complete planning sessions and training.
      Establish strategies to find children in need of surgery.
      Support the expenses related to surgery, transportation and counseling.
      Obtain paediatric intraocular lenses (approx. $90-120 each).
      Support the expenses related to spectacles and low vision services.

Planning

While there is evidence from many settings that enable the basic plan to be developed (including this
proposal), it has been our experience that a planning session, with all of the relevant stakeholders in
Malawi, is required. The planning session will use existing information to refine targets, specific activities
to achieve the targets, and assign responsibilities for next steps. A comprehensive CEHTF will require a
number of partners and support from a number of groups and a planning session is important for
building these partnerships and deciding upon responsibilities. The team from QECH and KCCO have
already developed targets and activities (this document) and the planning session would be expected to
confirm these as well as to determine what additional activities could be undertaken to support them.

Using key informants and radio to find children in need of services

The first experience with using key informants (community members who use various methods to
identify children who have severe vision loss or blindness) to find children in need of surgical services
was in Bangladesh. Success in Bangladesh was repeated in Malawi, Tanzania, and Ghana and it is
generally acknowledged that key informants can be very effective in finding children and helping them
access eye care services. It is recognized, however, that current training and screening practices can be
expensive and we will be exploring other approaches to the training of key informants and screening of
children. During the planning session, we will decide upon the specific details (sites for training of key
informants, who will provide the training, promotion, selection, etc.) for each district of the Southern
Region. The intent will be to identify at least 3 sites in each district which an examiner can visit following
a key informant training session. At each site it is anticipated that that around 10 children will be
identified in need of eye care services (some with surgical needs, medical needs, optical needs) and
referral will be provided to QECH for surgery. All children who are screened and identified in need of
surgery will be enrolled in the tracking system.


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Media Outreach

Previous experience suggests that radio programs can be effective in educating the population
regarding eye care needs of children. One radio program costs USD $50 per day, and we would
propose conducting one program per month. All parents of children who are brought for services will be
asked how they became aware of services (key informants, health workers, radio, etc.) so we can
assess the effectiveness of each method.

One of the major limits for the training is the lack of a reliable vehicle to be used for outreach
(conducting the key informant trainings, mobilizing the community and providing community screening
clinics). The eye department has two old dilapidated vehicles, both donated by Sight Savers
International more than 7 years ago, and there has been no replacement and currently no immediate
plans for replacement. A separate request for funding to another donor will be made to purchase a
vehicle. For the moment, other systems of transport will have to be used.

Supporting the cost of transport for parents/children for surgery and follow up

In order to increase the number of children receiving surgery, the program in Malawi will need to put into
place a system providing transport (reimbursement of travel expenses) for children and their parents. In
the first year a child often needs to be at hospital three to four times (surgery, surgical follow up,
spectacles, spectacles and low vision follow up) which can cost the family up to 30% of their monthly
family income. Accordingly, we will support the cost of transport.

In 2008 BICO, through Dr Kalua’s PhD budget, provided funding for all parents and children who had
cataract. Funding was for both surgery and follow up. Approximately $1,000 was spent over a period of
8 months for the 81 children who had cataract surgery. The Childhood Blindness & Low Vision
Coordinator (CBLVC) at QECH will responsible for counseling of parents and providing reimbursement
for transport expenses, as needed. In some cases, when parents have adequate resources,
reimbursement is not required. The coordinator will maintain a tracking system of all children who come
to QECH for surgery, calling those parents who have failed to return for follow up. If transport
reimbursement is needed, it will be provided.

Obtaining intraocular lenses for paediatric surgery

Paediatric IOLs can cost around $90-120 each; this high cost limits their application in developing
countries. Aurolab is developing a lower-cost paediatric IOL which should be available in the next year
or so. Standard (adult) IOLs, although considerably less expensive, often lead to post-operative
complications as well as posterior capsule opacification. These leads to loss of vision and requires
further surgical or medical interventions. Thus, it is preferable to provide a paediatric IOL for these
children.

Providing surgical and counseling services in the hospital

Key to having a quality eye care service for children is having a good paediatric ophthalmology team.
The team consists of:

   1)   Highly qualified paediatric ophthalmologist
   2)   Paediatric anesthetist
   3)   Childhood Blindness & Low Vision Coordinator (CBLVC)
   4)   Low vision technician
   5)   Optometrist trained in paediatrics.

Currently, the salaries of the team members are being funded by the Ministry of Health and others. As
yet, the Ministry of Health does not have a cadre which the CBLVC could fit within. Thus, the grant will
need to provide the salary for the CBLVC. The coordinator provides counseling for parents and children,
serves as an ombudsman for families, contacts parents for follow up and monitors all aspects of a child’s
journey to sight.


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Other (non-salary, non-transport) costs for surgery for children include food while at hospital, medicines,
and registration. These costs will be covered by the program, as needed.

Providing post-operative spectacles and low vision devices

                                                  It is essential that post-operative spectacles be
                                                  provided for over 90% of children receiving surgery for
                                                  congenital or developmental cataract. Spectacles need
                                                  to be made individually; ―ready-made‖ spectacles are
                                                  not appropriate. As children’s faces are smaller than
                                                  adult faces, using adult frames is inappropriate: the
                                                  papillary distance cannot be matched with outsized
                                                  frames and nose pieces are often too large to sit on a
                                                  child’s nose. Paediatric frames are generally more
                                                  expensive than adult frames and virtually impossible to
                                                  source in Africa. Finally, the program needs to provide
                                                  frames that children want to wear.

                                                    In 2008 in Blantyre, none of the 81 children who
                                                    had surgery received postoperative spectacles
                                                    because of the lack of frames. To avoid this problem
                                                    in the future, frames will be provided through the
                                                    KCCO (donations from Seva Canada). These frames
                                                    will be taken from stocks maintained at KCCO. The
                                                    lenses will be obtained locally and the fitting can be
                                                    done at the existing optical workshop in Blantyre. This
                                                    cost is likely to reduce through negotiations with the
                                                    optical workshop. The team in Blantyre will also
                                                    explore how they can order the lenses directly from
                                                    China or India to get the best possible price. We
anticipate distributing about 120 pairs of glasses in the first year and 150 in the second year. This
means that we will need a minimum number of 200 frames at the start of the project period.


Timeline of activities for QECH team and KCCO
September 09
      Continued planning sessions
      Prepare the radio messages and start broadcasting (focus on childhood cataract, need for
       surgery as early as possible, reimbursing travel, etc)
      Prepare brochures to be sent to all eye care staff throughout the Southern Region explaining the
       program, their responsibilities, etc.
      Map the Southern Region to divide up responsibilities (with other partners) for promotion, key
       informant training, etc.
      September 21-25, either Dr. Khumbo Kalua or the CBLVC will be in Moshi for the Childhood
       Cataract in Africa course, run by the KCCO and sponsored by Dark and Light Blind Care. During
       the course, KCCO staff will work with the Blantyre participant on some of the post-planning
       meeting activities.
October 09
      Funds for the program activities to be sent to QECH account by October 1 as funds for
       reimbursement of transport will be the first expenditures anticipated. IOLs and paedriatric frames
       will then be required.




                                                     6
Funding and accounting
Our planning will be for a three-year period. The proposed budget is attached. Budgeting and expense
reports will be carried out on a quarterly basis. All expenses will be planned in advance and all will be
backed up with receipts. KCCO will provide reporting to Seva Canada on a quarterly basis, clearly
documenting which expenses are covered by which group.



Visits to Malawi Sites
As Malawi is a stable country and the Blantyre team is well-organized, it is suggested that field visits
from Seva Canada will be organized. During field visits, it will be possible to:
      Join a training of the key informants to see how they work;
      Join a screening program to see how children with severe vision loss or blindness are
        identified, learn about the challenges families face in accessing services, etc.;
      Observe paediatric surgery in Blantyre and join parents when sight has been restored to a
        child;
      Observe the provision of spectacles to children in need.


For more information please contact:

SEVA CANADA SOCIETY
100-2000 West 12th Avenue
Vancouver, BC V6J 2G2
Tel: 604-713-6622
Fax: 604-733-4292
www.seva.ca

Penny Lyons – Executive Director                 Heather Wardle – Development Director
director@seva.ca                                 fundraising@seva.ca




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