Transcript Immunodefiency & Beriglobin ….A Patient’s perspective

South African Healthcare
System
 PID is South Africa
 Support in PID- PiNSA
 My own journey
 The caregiver & the patient
 The lessons I learned…
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Population: 53 Million
Only 3.3 million pays 99% of taxes
Per capita GDP: $12,700 p.a.
Only 16% of the population is covered by
medical insurance.
Only about 20% use private healthcare.
The rest pay "out of pocket" or through
hospital cash plans.
The three dominant hospital groups, control
75% of the market.
About 84% of the population depend on the
public healthcare system.
Countries sitting above the trend line are producing relatively better performance for the cost per capita inputs that
they are investing
Performance vs. Cost Comparison, 2008
Bahrain
High
UK
UAE
Kuwait
New Zealand
Czech Republic
Singapore
Spain
South Korea
Oman
Saudi Arabia
Poland
Slovakia
Performance
Low
India
Germany
Netherlands
US
Qatar
Hungary
Hong Kong
Italy
Israel
Argentina
R2=0.5367
Venezuela
Morocco
Peru
Namibia
Low
Middle East
Africa
Europe
Asia Pacific
Latin America
US & Canada
Switzerland
Canada
Uruguay
Brazil
Philippines
Malaysia
Russia
Taiwan
Algeria
Chile
China
México
Turkey
Colombia
South Africa
Kenya
Sweden
Australia
Belgium
Ireland
France
Cost (Spend per capita /Int.$)
Note: Trend line is a polynomial
Source: Discovery Health Pool Stream Database, Monitor Analysis
High
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2001- started out with 14 diagnosed patients
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2014 – 253 patients on SAPID registry
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A Estimated 900 000 may have PID in Africa
and only 1000 is registered
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Not routinely tested – Low medical awareness
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Often undetected
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97 patients actively participate in support
programs
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Prescribed Minimum Benefit for
Medical Insurers
◦ They are compelled to provide cover
◦ They do the very least they can
◦ Make it administrative nightmare
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Treatment of choice
◦ IVIG
 Polygam
 Octagam
◦ SCIG
 Beriglobin
 Intragam (being used off- label not registered)
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PiNSA
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Non Profit Organisation
Founder - Joy Rosario (acting chair)
Seed funding from IPOPI
Vision- “To ensure that people with PID in
SA receive optimal treatment and support”
◦ Driven by passionate family members
◦ Strategic objectives:
◦ Support, Awareness, Information,
Fundraising, Lobbying and training
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PID conditions is vastly underdiagnosed
No South African diagnostic and treatment
guidelines available
No Immunologist nor Immunology centres in South
Africa
Very few experts – Dr Monika Esser
Reliance on single product manufacturer in SA
Imported product – shortages & expensive
Competing diseases in the health sector, HIV/AIDS,
TB and Malaria
Public Health Sector largely dysfunctional
No response from Ministry of health to support PID
association
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No trained immunology nurses
No home-based care
Medical Advisory Panel is short of time
Late diagnoses and mismanagement
leads to severe disabilities
Patients get frustrated and
discouraged
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Diagnosed in 2005-CVID
Both my children also have
CVID
Started out on IVIG-Polygam
Switched to SCIG past 2years
Changed my quality of life
2013 co-hosted ASID/IPOPI
meeting in Sun City South
Africa
Attended INGID training
sessions, Ann Gardulf
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Huge need for support and
training
Involving the whole family
Managing the treatment
Treatment process
◦ How to administer
◦ Quality of life
Managing the side effects
The psychology behind PID
“Most people do not listen with the intent to
understand, they listen with the intent to
reply.”
Stephen Covey
”It is not the strongest of the species
that survive, nor the most intelligent,
But the one most responsive to change”
Charles Darwin