Christine Noke, CFW Program Director, attended a CF conference
in New Delhi, India. Since the conference offered both a medical and
scientific agenda for professionals and a lay programme for parents
of children with CF, Ms. Noke had the opportunity to access vital information
on how CFW can help provide appropriate CF care in India.
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Group of doctors with Solvay Pharmaceutical, CFW and the ICFPWA members who attended the workshop |
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India began its CF care in 1999 with the support of
ICF(M)A and the Southampton CF Unit. Presently, Dr S. K. Kabra heads
the Pulmonology Division at the All India Institute of Medical Sciences
(AIIMS) in New Delhi and treats 120 CF patients. A CF Clinic is held
weekly that allows patients to see a pediatrician, geneticist, a nurse,
physical therapist and a dietician. Patients attend the clinic every
4-6 weeks. In addition, the Indian CF Patient Welfare Association (ICFPWA)
strives to improve CF care.
Sadly, nearly 9% of children born in India will die before their 5th
birthday. More than 50% of all children under five are malnourished,
and we do not know how many of these children suffer from CF. Bringing
appropriate CF care to India by providing treatment from a multidisciplinary
medical team with routine follow-up care would improve survival rates
and help improve infant and early stage patient healthcare.
CFW assessment indicates that CF care in India faces three
key problems. First, genetic screening is needed to identify the number
of CF patients in India. Second, patients need access both geographically
and financially to specialized CF care. Third, funding is required to
support all initiatives established to promote CF care in India. Therefore,
CFW’s main objectives are spreading awareness of CF in India,
supporting activities that provide diagnosis and care for all CF families,
and strengthening the development of ICFPWA. Undoubtedly, a stronger
ICFPWA can serve as patient advocates, can lobby for government support
and can solicit funding.
CF Screening
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Vishal
age 6, being treated at AIIMS |
While the incidence of CF in India is unknown, many speculate
that the number is grossly underestimated. In India, diagnosis usually
occurs around 5 years of age. Currently, hospitals report using Macroduct©
sweat testing or using “homemade” sweat testing devices.
When 955 blood samples were tested for the Delta508 mutation, results
identified four heterozygotes in the study population. Detailed genotyping
of 124 CF patients screened 19 CFTR exons. Moreover, results indicated
that 20% carried Delta F 508 mutation. Other common mutations detected
were 1161delC.S549N and intron 19 mutation 1089+10kb C-T. In addition,
other rare mutations and seven new mutations were identified. Clearly,
CF is present in India. Undoubtedly, appropriate diagnostic equipment
available throughout India would provide diagnosis and eliminate false
positives.
Experts theorize that a three-year multi site study of
8,765 blood samples would identify the disease burden faced by India.
The aim of this study is to estimate incidence of CF in India and to
document carrier frequency of CF in the Indian population because the
emerging scenario suggests that the mutational profile in this region
differs from those found in Northern Europe, and the first step must
be to find out the local mutation frequencies, and whether each mutation
causes severe or mild cystic fibrosis. Furthermore, research results
would provide genetic mutations and carrier frequency through the region,
enabling practicing physicians the opportunity to diagnose CF patients
and to provide prenatal diagnosis of CF.
CF Specialized Care
Experts suspect that the majority of CF patients in India
die from malnutrition and respiratory complications prior to diagnosis.
The reason for this is two-fold. First, doctors are not aware that CF
diagnostic testing is necessary—many professionals do not know
that CF is present in India. Second, doctors are deficient in CF specialized
training due to this lack of awareness. Consequently, CF resources are
practically non-existent. Thus raising awareness is a priority because
when patients do not receive proper CF care, life expectancy is diminished.
Fortunately, conditions in India allow for some prompt
improvements. First, medical professionals trained to deal with chronic
disease could easily learn CF care and undergraduate training programs
can include CF treatment. Second, the Internet is readily available
in India making it the prime medium to disseminate CF information. CFW
can disseminate information and strengthen ICFPWA by providing a section
of the CFW website tailored to meet the needs of medical professionals,
patients and caregivers in India.
Funding for Treatments
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Prabha
with CF Child Shourya |
India has a very wide spectrum of people with enormous
differences in socio-economic status. Many people are unable to access
specialized care due to geographic or monetary reasons. Others who can
afford care, lack access to CF specialists. Therefore, some patients
will require financial support while others will need centres placed
regionally. Since development of CF centres improved CF treatment in
the West, CF centres staffed with medical personnel trained in CF care
located regionally, has the potential to improve earlier diagnosis and
treatment of the Indian CF population.
Funding for these endeavors is essential. Raising awareness
and determining the incidence of CF in India would provide diagnosis
and then supply correct, comprehensive and continual care in India.
Implementation of these directives serves to promote quality CF care
while extending the life expectancy of CF patients in India. Governmental
agencies, stakeholders and other organizations working together can
improve CF care in India.
It is clear that there exists an enormous possibility
for supporters to reach thousands who are suffering from CF in India.
Different forms of support can assist at various levels and address
specific needs. Stakeholders’ meetings made it clear that positive
inroads are already being made towards this
goal. However, increased support will greatly assist reform and a better
deal for PWCF in India.
