Suffering in silence: Assessing rare diseaseawareness and management in South Korea

Suffering in silence: Assessing rare diseaseawareness and management in South Korea
In November-December 2019, The Economist
Intelligence Unit surveyed 100 practising
healthcare professionals from South
Korea, as part of an Asia-Pacific analysisof understanding and challenges faced inmanaging rare diseases.
Our survey respondents from South Korea
comprised general practitioners or primarycare physicians (45%), specialist physicians(35%), nurses (10%) and pharmacists(10%). Respondents reported working in
predominantly private (58%) and public (12%)
or teaching healthcare institutions (25%).

Results in context: South Korea’s
health system• South Korea’s population was estimatedto be 51.2m in 2019.1 The average life
expectancy was an estimated 82 years
in 2018, with a modest increase to 83
years projected by 2023. Infant mortality
is low, with an estimated three deaths
per 1,000 live births. In 2018, South Korea
saw its fertility rate fall to an all-time
low of 0.98 births per woman, and South
Korea is facing a rapid increase in oldage dependency ratio with its ageingpopulation. Non-communicable diseases
are the biggest causes of mortality inSouth Korea, accounting for nearly 80%of deaths. Cardiovascular diseases andcancer are the biggest causes of death.2• According to OECD data, healthexpenditure was 8.1% of GDP in 2018,
an increase of nearly 8% from 2017.
The National Health Insurance (NHI),
a government single-payer universal
health coverage system established in
the late 1980s, covered 51.1m people by
the end of 2018, nearly the entire South
Korean population. Budget limitations
remain an issue for accessing new
medicines within the system. In addition,
mismatch between reimbursement
guidelines and clinical practiceguidelines result in insufficient care forsome rare disease patients.3• In early 2018, the government launcheda five-year plan to reform the NHI
scheme with a view to deepen coverageand subsidise around 3,800 treatments
currently only covered by private
insurance or out-of-pocket payments.
Patient co-payment rates are 20% forinpatient services, and between 30%
and 60% for outpatient care, with a total
out-of-pocket payment cap set based on
income bracket. Private health insurance
spending accounted for only 7.4% of
total healthcare spending in 2018.2• There were over 100,000 doctors andaround 195,000 nurses registered in2018, providing 2.4 doctors per 1,000people. There is a skew towards
specialist physicians working in theprivate sector, with primary healthservices delivered in the public system.2

Sponsored by:
1 United Nations Population Division, World Population Prospects 2019. Estimates 1950–2020.
2 The Economist Intelligence Unit. Industry Report Healthcare South Korea. 3rd Quarter 2019.
3 Kii-Young Yoo, et al. “Global hemostatic assay of different procoagulant activities of factor VIII andfactor IX”. Blood Research 2018
© The Economist Intelligence Unit Limited 20201

Suffering in silence: Assessing rare diseaseawareness and management in South Korea

Prioritising rare diseases: Evolving
health policy to capture morepatients in South Korea• More than half of our survey respondents
either did not know there was a unified
definition for rare diseases enshrinedin policy, or incorrectly reported that
one did not exist (Figure 1). Among thissubgroup, there appears to be somealignment between policy and whathealthcare professionals value.

• In 2015, South Korea’s parliament passed
the Rare Disease Management Act,requiring that the Ministry of Health andWelfare commit to greater research anddevelopment of plans for the prevention,diagnosis and treatment of rare diseases.

The top three most-cited elements thatshould be included in a definition of rarediseases were:• In 2017, the Ministry of Health andWelfare released a 2017-2021 roadmap for the diagnosis, treatment andmanagement of rare diseases. This
comprises four strategies aroundbuilding an evidence base, establishinga basis for diagnosis and treatment,expanding diagnosis and treatment
support, and strengthening R&D.
• As a first step, the Korean Undiagnosed
Disease Programme (KUDP) waslaunched as a small pilot programmewith a sample group of under 100
patients. This expert, multi-disciplinary
consortium of paediatric and adultmedical specialists, based at a totalof six institutions, acts as a referral
board for diagnosing difficult cases. The
programme was expanded to cover 11
centres treating such conditions by theend of 2019.
• South Korea’s Rare Disease Management
Act defines rare diseases as any affecting
fewer than 20,000 people in the country(approximately 3.9 cases per 10,000).
It is also notable for its inclusion ofconditions with unknown burden due todifficulty in diagnosis. 4

o A disease with an undefined low
prevalence (73.6% of respondents).
o Effect on quality of life or risk ofdisability (64.2% of respondents).
o Difficulty of diagnosis (60.4%of respondents).

Figure 1

Knowledge of rare disease definitions among physicians inSouth Korea; Survey responses to the question “Is there aunified definition of rare diseases in your market?

100%
80%
60%
40%

47.0%
34.0%

20%

19.0%

0%
Yes

NoDon’t know

4 Korea Legislation Research Institute. Available at: http://elaw.klri.re.kr/eng_service/lawView.do?hseq=43655&lang=ENG (Accessed Feb 2020).

© The Economist Intelligence Unit Limited 20202

Suffering in silence: Assessing rare diseaseawareness and management in South Korea

middling confidence in their own
knowledge of rare diseases (on average
3.11 out of 5) and that of their peers(average 2.90 out of 5).

• When asked about the usefulnessof having a rare disease definition,
healthcare professionals in South
Korea identified facilitating diagnosis
and developing new treatments as thegreatest advantage. Interestingly, ourrespondents also saw potential for adefinition to aid societal understanding
and acceptance of rare diseases (38%rated this as most important on a5-point scale).

• Healthcare professionals in South
Korea reported seeing new rare disease
patients more frequently than any othermarkets in our study. 22% see a newpatient more than once a month and
28% see a new patient more than once
every 6 months. Thirteen percent havenever seen a new rare disease patientpresent for care.

Low confidence in rare diseaseknowledge among healthcare
professionals despite seeing
patients more frequently• Healthcare professionals from South
Korea responding to our survey had

Figure 2

Survey responses reporting average proportion of patients managed with the optimal to sub-optimal carein five Asia-Pacific markets.
Managed with the best evidence-based care
Not managed with the best evidence-based care due to lack of clinical practice guidelines
Not managed with the best evidence-based care due to lack of regulatory approval of medicine
Not managed with the best evidence-based care due to lack of funding for testing/treatment
Not managed with the best evidence-based care for other reasonsTaiwan
38.2%

19.1%

14.3%

14.1%

14.3%

South Korea
28.5%

24.0%

14.8%

16.0%

16.7%

18.3%

14.1%

Japan
24.8%

23.8%

23.7%

22.4%

19.0%

China
17.4%

19.6%

16.9%

Australia
42.6%
0%

10%

20%

19.9%
30%

40%

50%

12.9%
60%

70%

15.7%
80%

8.8%
90%

100%

© The Economist Intelligence Unit Limited 20203

Suffering in silence: Assessing rare diseaseawareness and management in South Korea

Increased national collaboration toovercome challenges in raredisease care
• Respondents to our survey report thaton average 29% of cases are managedwith best evidence-based care (Figure 2).
• Respondents from South Korea,
identified initiation of care, cost of care,and providing social care as the weakest
elements of their health system’s
response to rare diseases.
• Multiple areas were cited as challenges
when diagnosing and managing rarediseases, most notably:o Reaching the correct diagnosis (72.4%
report this is nearly always or isalways a challenge).
o Access to medicines (58.6% report
this is nearly always or is alwaysa challenge).
o Patient group support (51.7% report
this is nearly always or is always
a challenge).
o Access to ongoing professional
training (52.9% report this is nearly
always or is always a challenge).
• When our survey respondents wereasked about the one action that should
be taken to improve the lives of raredisease patients in South Korea, themost common responses were:o Enhanced national collaboration fordiagnosis and management.
o Professional development, trainingand placement programmes.

Despite low awareness of patientorganisations, potential merit isseen in budgeting decisions• 35% of respondents did not know if
there are rare disease organisations
active in South Korea. 13% incorrectly
reported that none are active.
• Our respondents suggested they wanted
to see more activity from patient groups
in all areas. Notably, promoting diseaseawareness and providing patient
education and support were valued bymore than 80% of respondents.
o Respondents were keenly aware of
the potential for patient groups tohave a voice in decisions on budget
distribution or insurance coverage.
This was deemed less valuable inother markets of our study, but 75%
of South Korean respondents felt
patient groups should do more inthis area.
o In addition, 73.1% of our respondents
felt patient groups had a bigger roleto play in providing screening or
genetic counselling services—thehighest proportion in any of ourmarkets studied.

o Increased and consistent financialsupport.

While every effort has been taken to verify the accuracy of this information, The Economist Intelligence Unit Ltd. cannot accept any responsibility
or liability for reliance by any person on this report or any of the information, opinions or conclusions set out in this report. The findings and views
expressed in the report do not necessarily reflect the views of the sponsor.
© The Economist Intelligence Unit Limited 20204