Transcript A Rapid Assessment Protocol for Improving Access (RAPIA

A Rapid Assessment Protocol for
Improving Access (RAPIA) to Medicine
and Care for Children living with a
Chronic Condition (Congenital Adrenal
Hyperplasia) in Vietnam
David Beran on behalf of Kate Armstrong
Co-authored by:
Dr Kate Armstrong (Caring & Living As Neighbours)
David Beran (International Insulin Foundation)
Assoc Prof Maria Craig (The Children’s Hospital at Westmead)
Claire Henderson (Caring & Living As Neighbours)
Chronic Disease & Children
• Chronic health conditions are a major global health policy issue (UN High
Level Meeting on Non-Communicable Diseases (NCDs) in New York,
September 2011)
• NCDs and other chronic health conditions affect children and not just
adults. Almost 1 in 4 children in the US are estimated to have a chronic
health condition; 1 in 10 are affected by Asthma alone.
• Barriers to affordable access to essential medicine and care result in
increased morbidity and mortality for children with chronic health
conditions eg. Insulin and expert care required for Type 1 Diabetes.
• Children in low and middle income countries (LMICs) are at especial risk.
In 2002, more than 1.2 million people below the age of 20 died of a NCD.
Surveys in LMICs indicate almost 1 in 4 children between the ages of 2
and 9 years have (or are at risk of) a disability
It’s not “too hard”
• CLAN (Caring & Living As Neighbours) is an Australian-based NGO
committed to helping children with chronic health conditions in LMICs
enjoy the highest quality of life possible
• Identifying children with the same chronic health condition as members
of a non-geographically based “community”, CLAN collaborates with a
range of multisectoral partners to support rights-based, community
development approaches to sustainable, scalable, population-based
change
• CLAN’s strategic framework for action focuses the actions of
community members and all partners on “5 Pillars”:
1.
2.
3.
4.
5.
Affordable access to medicine and equipment
Education, research and advocacy
Optimisation of medical management
Encouragement of family support groups
Helping families achieve financial independence and overcome poverty
Example of an NCD in Childhood - CAH
• Congenital adrenal hyperplasia (CAH) is the
most common adrenal condition of
childhood
• Genetically acquired. Not curable. Lifelong
condition
• Cortisol (as hydrocortisone tablets or
injection during emergencies) and
aldosterone (as fludrocortisone tablets)
replacement are essential to survival.
• Medicine is taken two to three times a day
in childhood
• Failure to take any medicine is not
compatible with survival. Under-dosing
results in short stature, precocious puberty
and virilisation. With correct dosing
children can enjoy a normal quality of life.
Understanding CAH in Vietnam
• In 2005, a needs analysis of families
determined unaffordable access to
medicine was their primary concern
Figure 1. Age Distribution of CAH Patients at NHP
(Vietnam, June 2005)
No. of Patients
• In 2004, CLAN became aware of the high
mortality and morbidity associated with
CAH in Vietnam through anecdotal reports
90
80
70
60
50
40
30
20
10
0
70
60
37
31
25
16
7
0-1
2-3
4-5
6-7
8-9
6
10 - 11 12 - 13 14 - 15 16 - 17
Age (years)
• Children were being diagnosed at birth,
but lost to follow-up (sharp drop-off in age
distribution beyond early childhood)
Average Annual Incomes
VND
• The average family income for children not
lost to follow-up was about 40% higher
than the national average income and 93%
higher than income of rural poor families
30
16,000,000
14,000,000
12,000,000
10,000,000
8,000,000
6,000,000
4,000,000
2,000,000
0
Rural Poor
Vietnam
NHP CAH
Families
8
18 +
Objectives:
• The Diabetes RAPIA survey was conducted in Vietnam by the IIF in
2008 to explore barriers to insulin access and diabetes care.
• CLAN took this opportunity to implement an adapted protocol and
clearly identify barriers to accessing medicine and care for children
with CAH in Vietnam.
• Although the exact incidence of CAH in Vietnam is not yet known,
initial newborn screening trials in 2007 suggest it may be higher in
Vietnam (closer to 1:6,000, as is found in the Philippines) than
Australia, the United States, and the United Kingdom (generally
around 1:18,000).
Design:
• Structured surveys and templates used in the Diabetes RAPIA were
adjusted to specifically address CAH.
• The CAH RAPIA was not a statistical assessment of the Vietnamese
health system, but rather a rapid collation of qualitative and
quantitative data to analyse CAH in a low-income setting.
Design
Design
Macro
Multi-level assessment of Health system
Micro
Meso
•Ministry of Health
•Ministry of Trade
•Ministry of Finance
•Central Medical Store
•National Diabetes Association
•Private/Public drug importer
•Educators
•Regional Health
Organisation
•Hospitals, Health Centres,
etc.
•Pharmacies, Drug
•Healthcare Workers
•Traditional Doctors
•Patients
Dispensaries
Perspectives on the problem of access to Insulin and Diabetes care
Beran, D et al. BMC Health Serv Res, 2006
Setting:
• The CAH RAPIA was a multi-level assessment of factors influencing
access to medicine and care for people living with CAH in Vietnam,
and had three components: macro (ministerial levels, private
sector), meso (provincial levels and health care settings), and micro
(caregivers and people living with CAH).
• Data were collected in Hanoi, Ho Chi Minh City, Thai Nguyen
Province, and Dong Nai Province.
Study Population:
• 204 interviews (for diabetes and CAH) were conducted.
• Participants were selected on the basis of role (ministerial and
health sector) and convenience sampling (CAH families) from the
four provinces (two mainly urban and two relatively wealthy and
urban)
• The three largest Children’s Hospitals in Vietnam were involved in
the CAH RAPIA (CAH is a complex chronic condition, and health
professionals at provincial hospitals are not trained in the
management of CAH, hence all children with CAH once diagnosed
are generally referred to at least one of these three hospitals)
Outcome measures for CAH RAPIA:
1. Understanding key barriers to accessing medicines and care for
people living with CAH in Vietnam
2. Using CAH RAPIA to inform future action to maximise quality of life
for children living with CAH in Vietnam
3. Focus on key policy change (particularly regarding registration and
importation of hydrocortisone and fludrocortisone and financial
burdens on CAH families).
1. Advocacy for change at all levels
–
–
–
–
Family and community level
Local health facility level
Ministry of Health
WHO
Results of the CAH RAPIA
•
Lack of older children with CAH (over 90% of patients registered with CAH
were younger than 15),
– interviews with health care workers confirmed that more young children with CAH were
surviving than had been the case previously
•
60% of families identified financial burdens (cost of medicines in the main) as
their greatest concern.
•
Barriers to affordable access to hydrocortisone and fludrocortisone were
identified as a mix of national and international factors:
•
•
•
Barriers to care that were identified included:
•
•
•
•
•
•
neither drug included in the WHO EMLc,
neither drug registered in Vietnam, with variable pricing and quality a result
lack of access to trained health professionals, particularly beyond major centres;
travel costs
health systems not developed for paediatric chronic disease
clinical infrastructure unavailable
a mismatch between actual and insurance-approved referral pathways.
CAH family support clubs were identified as effective for education and
support.
Conclusions:
Positive outcomes for the CAH Community in Vietnam have included:
1. Raised understanding and awareness:




RAPIA highlighted key opportunities for ongoing action; shared with all stakeholders
Comprehensive educational resources on CAH translated into Vietnamese language for Club meetings
now available to Universities, Hospitals and all CAH families in Vietnam
Media (national TV) has attended annual CAH Club meetings (500+ people attend) in 2010 and 2011
Grassroots work informed advocacy ahead of the UN High Level Meeting on NCDs in 2011
2. Measurable improvements in quality of life and health outcomes for children with CAH:




Increase in number of survivors (a 5 fold increase over the last decade)
Decline in mortality
Urgent and random presentations to Emergency and Outpatient Departments dropped markedly
(family education & improved access to medicines); scheduled reviews most usual presentation now
CAH Club meetings now scheduled to run in provinces (saves families travelling to capital cities)
3. New healthy public policy decisions:





CLAN partnered with other NGOs to successfully advocate for inclusion of hydrocortisone and
fludrocortisone tablets in the WHO essential medicine list for children (EMLc) - approved October 2008
2010 - Vietnamese government imports both hydrocortisone and fludrocortisone tablets
2011 - hydrocortisone and fludrocortisone tablets both included in the national insurance scheme for
inpatients and outpatients, making them affordably available for all
2010-11 - Vietnamese Ministry of Health includes CAH within National Newborn Screening Panel
Hospital Outpatient Departments streamlining & systematising routine care
Implications
•
A strategic, community development approach (utilising CLAN’s 5 Pillars) has been
effective in facilitating sustainable, long-term improvements in quality of life and
survival for children living with CAH in Vietnam
•
The RAPIA is an adaptable tool that empowers communities to improve access to
essential medicines by helping all stakeholders better understand the key barriers
to access and affordability
•
Framing the RAPIA within a broader grassroots, community development strategic
approach to NCDs has the potential to effect population-based change
•
A model that combines CLAN’s 5 Pillars and the RAPIA could be adapted to other
chronic conditions of childhood (and adults)
Acknowledgements
•
The CAH RAPIA was funded by CLAN with generous practical support from
David Beran of the International Insulin Foundation.