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Catastrophic expenditure and impoverishment of patients affected by 7 rare diseases in China.

ABSTRACT: China is actively promoting regulation of rare diseases, rare disease and orphan drugs have been formally incorporated into the national planning. However, few studies have been done to evaluate the affordability of rare disease patients in China. This study aims to provide policy recommendations for the establishment of social security mechanism for rare diseases in China, so as to address the problem of poverty caused by these diseases.A total of 7 rare diseases were selected by Delphi method. Affordability of treatment for the 7 rare diseases was assessed through annual per capital income, catastrophic expenditure and impoverishment expenditure among urban and rural residents in China.Assessed through annual per capital income, health expenditure for the 7 rare diseases are all rather high. The highest health expenditure is equivalent to income of 69.34 years of one urban resident, and the burden is heavier for rural residents. Through catastrophic expenditure assessment, proportions of the population experiencing catastrophic expenditure caused by the 7 rare diseases are all under 0.167 ‰. However, once one is ill and taking medications, he will suffer from catastrophic health expenditure. Through impoverishment expenditure assessment, the proportions of impoverishment payment are low among both urban and rural residents, but the 7 rare diseases could lead nearly 4.6 million people into poverty on a national scale.The affordability of treatment for rare disease as well as orphan drugs is rather poor. Residents of different income levels all have difficulties to afford the treatment for rare diseases, so poverty caused by rare diseases is quite widespread. Therefore, social security mechanism for rare disease patients should be established and specific payment pattern for orphan drugs should be set up.

SUBMITTER: Xin XX

PROVIDER: S-EPMC4895890 | biostudies-literature | 2016 Jun

REPOSITORIES: biostudies-literature

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Catastrophic expenditure and impoverishment of patients affected by 7 rare diseases in China.

Xin Xiao-Xiong XX Guan Xiao-Dong XD Shi Lu-Wen LW

Orphanet journal of rare diseases 20160606 1

<h4>Background</h4>China is actively promoting regulation of rare diseases, rare disease and orphan drugs have been formally incorporated into the national planning. However, few studies have been done to evaluate the affordability of rare disease patients in China. This study aims to provide policy recommendations for the establishment of social security mechanism for rare diseases in China, so as to address the problem of poverty caused by these diseases.<h4>Methods</h4>A total of 7 rare disea ...[more]

PMID: 27266878

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Project description:BackgroundWhile healthcare costs for rotavirus gastroenteritis requiring hospitalization may be burdensome on households in Malaysia, exploration on the distribution and catastrophic impact of these expenses on households are lacking.ObjectivesWe assessed the economic burden, levels and distribution of catastrophic healthcare expenditure, the poverty impact on households and inequities related to healthcare payments for acute gastroenteritis requiring hospitalization in Malaysia.MethodsA two-year prospective, hospital-based study was conducted from 2008 to 2010 in an urban (Kuala Lumpur) and rural (Kuala Terengganu) setting in Malaysia. All children under the age of 5 years admitted for acute gastroenteritis were included. Patients were screened for rotavirus and information on healthcare expenditure was obtained.ResultsOf the 658 stool samples collected at both centers, 248 (38%) were positive for rotavirus. Direct and indirect costs incurred were significantly higher in Kuala Lumpur compared with Kuala Terengganu (US$222 Vs. US$45; p<0.001). The mean direct and indirect costs for rotavirus gastroenteritis consisted 20% of monthly household income in Kuala Lumpur, as compared with only 5% in Kuala Terengganu. Direct medical costs paid out-of-pocket caused 141 (33%) households in Kuala Lumpur to experience catastrophic expenditure and 11 (3%) households to incur poverty. However in Kuala Terengganu, only one household (0.5%) experienced catastrophic healthcare expenditure and none were impoverished. The lowest income quintile in Kuala Lumpur was more likely to experience catastrophic payments compared to the highest quintile (87% vs 8%). The concentration index for out-of-pocket healthcare payments was closer to zero at Kuala Lumpur (0.03) than at Kuala Terengganu (0.24).ConclusionsWhile urban households were wealthier, healthcare expenditure due to gastroenteritis had more catastrophic and poverty impact on the urban poor. Universal rotavirus vaccination would reduce both disease burden and health inequities in Malaysia.

Project description:BackgroundThe extent of catastrophic health expenditure and impoverishment associated with depression in low-and middle-income countries is not known. The aim of this study was to estimate the incidence and intensity of catastrophic out-of-pocket (OOP) health expenditure, level of impoverishment and coping strategies used by households of persons with and without depression in a rural Ethiopian district.MethodsA comparative cross-sectional survey was conducted, including 128 households of persons with depression and 129 households without. Depression screening was conducted using the Patient Health Questionnaire, nine item version (PHQ-9). People in the depression group were classified into high and low disability groups based on the median value on the World Health Organization Disability Assessment Schedule (WHODAS) polytomous summary score. Health expenditure greater than thresholds of 10 and 25% of total household consumption was used for the primary analyses. The poverty headcount, poverty gap and normalized poverty gap were estimated using retrospective recall of total household expenditure pre- and post-OOP payments for health care. Linear probability model using binreg command in STATA with rr option was used to estimate risk ratio for the occurrence of outcomes among households with and without depression based on level of disability.ResultsCatastrophic OOP payments at any threshold level for households with depression and high disability were higher than control households. At the 10% threshold level, 24.0% of households of persons with depression and high disability faced catastrophic payments compared with 15.3% for depression and low disability and 12.1% for control households (p = 0.041). Depression and high disability level was an independent predictor of catastrophic OOP payments: RR 2.1; 95% CI:1.1, 4.6. An estimated 5.8% of households of persons with depression and high disability were pushed into poverty because of paying for health care compared with 3.5% for households of persons with depression and low disability and 2.3% for control households (p = 0.039).ConclusionsHouseholds of people with depression and high disability were more likely to face catastrophic expenditures and impoverishment from OOP payments. Financial protection interventions through prepayment schemes, exemptions and fee waiver strategies need to target households of persons with depression.

Project description:To assess the financial burden due to out of pocket (OOP) payments, two mutually exclusive approaches have been used: catastrophic health expenditure (CHE) and impoverishment. Sub-Saharan African (SSA) countries primarily rely on OOP and are thus challenged with providing financial protection to the populations. To understand the variations in CHE and impoverishment in SSA, and the underlying determinants of CHE, a scoping review of the existing evidence was conducted.This review is guided by Arksey and O'Malley scoping review framework. A search was conducted in several databases including PubMed, EBSCO (EconLit, PsychoInfo, CINAHL), Web of Science, Jstor and virtual libraries of the World Health Organizations (WHO) and the World Bank. The primary outcome of interest was catastrophic health expenditure/impoverishment, while the secondary outcome was the associated risk factors.Thirty-four (34) studies that met the inclusion criteria were fully assessed. CHE was higher amongst West African countries and amongst patients receiving treatment for HIV/ART, TB, malaria and chronic illnesses. Risk factors associated with CHE included household economic status, type of health provider, socio-demographic characteristics of household members, type of illness, social insurance schemes, geographical location and household size/composition. The proportion of households that are impoverished has increased over time across countries and also within the countries.This review demonstrated that CHE/impoverishment is pervasive in SSA, and the magnitude varies across and within countries and over time. Socio-economic factors are seen to drive CHE with the poor being the most affected, and they vary across countries. This calls for intensifying health policies and financing structures in SSA, to provide equitable access to all populations especially the most poor and vulnerable. There is a need to innovate and draw lessons from the 'informal' social networks/schemes as they are reported to be more effective in cushioning the financial burden.

Project description:BackgroundThere are limited nationally representative studies globally in the post-2015 END tuberculosis (TB) era regarding wealth related inequity in the distribution of catastrophic costs due to TB care. Under the Chinese national tuberculosis programme setting, we aimed to assess extent of equity in distribution of total TB care costs (pre-treatment, treatment and overall) and costs as a proportion of annual household income (AHI), and describe and compare equity in distribution of catastrophic costs (pre-treatment, treatment and overall) across population sub-groups.MethodsAnalytical cross-sectional study using data from national TB patient cost survey carried out in 22 counties from six provinces in China in 2017. Drug-susceptible pulmonary TB registered under programme, who had received at least 2 weeks of intensive phase therapy were included. Equity was depicted using concentration curves and concentration indices were compared using dominance test.ResultsOf 1147 patients, the median cost of pre-treatment, treatment and overall care, were USD 283.5, USD 413.1 and USD 965.5, respectively. Richer quintiles incurred significantly higher pre-treatment and treatment costs compared to poorer quintiles. The distribution of costs as a proportion of AHI and catastrophic costs were significantly pro-poor overall as well as during pre-treatment and treatment phase. All the concentration curves for catastrophic costs (due to pre-treatment, treatment and overall care) stratified by region (east, middle and west), area of residence (urban, rural) and type of insurance (new rural co-operative medical system [NCMS], non-NCMS) also exhibited a pro-poor pattern with statistically significant (P < 0.01) concentration indices. The pro-poor distribution of the catastrophic costs due to TB treatment was significantly more inequitable among rural, compared to urban patients, and NCMS compared to non-NCMS beneficiaries.ConclusionsThere is inequity in the distribution of catastrophic costs due to TB care. Universal health coverage, social protection strategies complemented by quality TB care is vital to reduce inequitable distribution of catastrophic costs due to TB care in China.

Project description:OBJECTIVE:To examine the association of health insurances on catastrophic health expenditure (CHE), and compares that among different health insurances in the last two decades in China. METHODS:The systematic review was conducted according to the Cochrane Handbook and reported according to PRISMA. We searched English and Chinese literature databases including PubMed, EM base, web of science, CNKI, Wan fang, VIP and CBM (Sino Med) for empirical studies on the association between health insurance and CHE from January 2000 to June 2020. Study selection, data extraction and quality appraisal were conducted by two reviewers. The secular trend of CHE rate and comparisons between population with different health insurances were conducted using meta-analysis, subgroup analysis and meta-regression. RESULTS:A total of 4874 citations were obtained, and finally 30 eligible studies with 633917 participants were included. The overall CHE rate was 13.6% (95% CI: 13.1% - 14.0%) from Jan 2000 to June 2020, 12.8% (95% CI: 12.2% - 13.3%) for people with health insurance compared with 16.2% (95% CI:15.4% - 16.9%) for people without health insurance. For types of insurance, the CHE rate was 13.0% (95% CI: 12.4% - 13.6%) for people with new rural cooperative medical scheme (NCMS), 11.9% (95% CI: 9.3% - 14.5%) for urban employees health insurance (UEBMI), 12.0% (95% CI: 8.3% - 15.6%) for urban residents health insurance (URBMI), and 18.0% (95% CI: - 4.5% - 31.5%) for commercial insurance. However, the CHE rate in China has increased in the past 20 years, even adjusted for other factors. The CHE rate of people with NCMS has increased significantly more than people with UEBMI and URBMI. CONCLUSION:In the past 20 years, the basic health insurance plan has reduce the rate of CHE to a certain extent, but due to the rapid increase in medical costs and the release of health needs in recent years, it masks the role of health insurance. More efforts are needed to control unreasonable medical demand and rising costs.

Project description:IntroductionIt is well-known that the prevalence of chronic diseases is high among older people, especially those who are poor. Moreover, chronic diseases can result in catastrophic health expenditure. The relationship between chronic diseases and their financial burden on households is thus double-sided, as financial difficulties can give rise to, and result from, chronic diseases. Our aim was to examine the levels of catastrophic health expenditure imposed by private out-of-pocket payments among older people diagnosed with diabetes mellitus, cardiovascular diseases and cancer in 15 European countries.MethodsThe SHARE dataset for individuals aged 50+ and their households, collected in 2010-2012 was used. The total number of participants included in this study was N = 51,661. The sample consisted of 43.8% male and 56.2% female participants. The average age was 67 years. We applied an instrumental variable approach for binary instrumented variables known as a treatment-effect model.ResultsWe found that being diagnosed with diabetes mellitus and cardiovascular diseases was associated with catastrophic health expenditure among older people even in comparatively wealthy countries with developed risk-pooling mechanisms. When compared to the Netherlands (the country with the lowest share of out-of-pocket payments as a percentage of total health expenditure in our study), older people diagnosed with diabetes mellitus in Portugal, Poland, Denmark, Italy, Switzerland, Belgium, the Czech Republic and Hungary were more likely to experience catastrophic health expenditure. Similar results were observed for diagnosed cardiovascular diseases. In contrast, cancer was not associated with catastrophic health expenditure.DiscussionOur study shows that older people with diagnosed chronic diseases face catastrophic health expenditure even in some of the wealthiest countries in Europe. The effect differs across chronic diseases and countries. This may be due to different socio-economic contexts, but also due to the specific characteristics of the different health systems. In view of the ageing of European populations, it will be crucial to strengthen the mechanisms for financial protection for older people with chronic diseases.

Project description:BackgroundThe scaling up of antiviral treatment (ART) coverage in the past decade has increased access to care for numerous people living with HIV/AIDS (PLWHA) in low-resource settings. Out-of-pocket payments (OOPs) represent a barrier for healthcare access, adherence and ART effectiveness, and can be economically catastrophic for PLWHA and their family. We evaluated OOPs of PLWHA attending outpatient and inpatient care units and estimated the financial burden for their households in the Lao People's Democratic Republic. We assumed that such OOPs may result in catastrophic health expenses in this context with fragile economical balance and low health insurance coverage.MethodsWe conducted a cross-sectional survey of a randomized sample of routine outpatients and a prospective survey of consecutive new inpatients at two referral hospitals (Setthathirat in the capital city, Savannaket in the province). After obtaining informed consent, PLWHA were interviewed using a standardized 82-item questionnaire including information on socio-economic characteristics, disease history and coping strategies. All OOPs occurring during a routine visit or a hospital stay were recorded. Household capacity-to-pay (overall income minus essential expenses), direct and indirect OOPs, OOPs per outpatient visit and per inpatient stay as well as catastrophic spending (greater than or equal to 40% of the capacity-to-pay) were calculated. A multivariate analysis of factors associated with catastrophic spending was conducted.ResultsA total of 320 PLWHA [280 inpatients and 40 outpatients; 132 (41.2%) defined as poor, and 269 (84.1%) on ART] were enrolled. Monthly median household income, essential expenses and capacity-to-pay were US$147.0 (IQR: 86-242), $126 (IQR: 82-192) and $14 (IQR: 19-80), respectively. At the provincial hospital OOPs were higher during routine visits, but three fold lower during hospitalization than in the central hospital ($21.0 versus $18.5 and $110.8 versus $329.8 respectively (p<0.01). The most notable OOPs were related to transportation and to loss of income. A total of 150 patients (46.8%; 95%CI: 41.3-52.5) were affected by catastrophic health expenses; 36 outpatients (90.0%; 95%CI: 76.3-97.2) and 114 inpatients (40.7%; 95%CI: 34.9-46.7). A total of 141 (44.0%) patients had contracted loans, and 127 (39.6%) had to sell some of their assets. In the multivariate analysis, being of Lao Loum ethnic group (Coef.-1.4; p = 0.04); being poor (Coef. -1.0; p = 0.01) and living more than 100 km away from the hospital (Coef.-1.0; p = 0.002) were positively associated with catastrophic spending. Conversely being in the highest wealth quartile (Coef. 1.6; p<0.001), living alone (Coef. 1.1; p = 0.04), attending the provincial hospital (Coef. 1.0; p = 0.002), and being on ART (Coef.1.2; p = 0.003), were negatively associated with catastrophic spending.ConclusionPLWHA's households face catastrophic OOPs that are not directly attributable to the cost of ART or to follow-up tests, particularly during a hospitalization period. Transportation, distance to healthcare and time spent at the health facility are the major contributors for OOPs and for indirect opportunity costs. Being on ART and attending the provincial hospital were associated with a lower risk of catastrophic spending. Decentralization of care, access to ART and alleviation of OOPs are crucial factors to successfully decrease the household burden of HIV-AIDS expenses.

Dataset Information

Catastrophic expenditure and impoverishment of patients affected by 7 rare diseases in China.

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Catastrophic expenditure and impoverishment of patients affected by 7 rare diseases in China.

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