Homeless persons with HIV/AIDS have greater morbidity and mortality, more hospitalizations, less use of antiretroviral therapy, and worse medication adherence than HIV-infected persons who are stably housed. We examined the effect of homelessness on the mortality of persons with AIDS and measured the effect of supportive housing on AIDS survival.The San Francisco AIDS registry was used to identify homeless and housed persons who were diagnosed with AIDS between 1996 and 2006. The registry was computer-matched with a housing database of homeless persons who received housing after their AIDS diagnosis. The Kaplan-Meier product limit method was used to compare survival between persons who were homeless at AIDS diagnosis and those who were housed. Proportional hazards models were used to estimate the independent effects of homelessness and supportive housing on survival after AIDS diagnosis.Of the 6,558 AIDS cases, 9.8% were homeless at diagnosis. Sixty-seven percent of the persons who were homeless survived five years compared with 81% of those who were housed (p < 0.0001). Homelessness increased the risk of death . Homeless persons with AIDS who obtained supportive housing had a lower risk of death than those who did not .Supportive housing ameliorates the negative effect of homelessness on survival with AIDS. Homelessness is associated with excess morbidity and mortality -4. HomelAmong HIV-infected persons, unstable housing has been associated with fewer ambulatory care visits , greaterMortality among HIV-infected persons with unstable housing has not been well-studied. Two studies found no effect of homelessness on AIDS survival; however, one of the studies was conducted before the availability of effective antiretroviral therapy  and the All adult and adolescent (aged ≥13 years) San Francisco residents who were diagnosed with AIDS from January 1, 1996 through December 31, 2006 and reported to the San Francisco Department of Public Health (SFDPH) by November 30, 2007 were included in the study. The AIDS surveillance system is evaluated annually and consistently found to be over 95% complete .Pneumocystis jirovecii pneumonia (PCP) and Mycobacterium avium complex (MAC).More than 90% of AIDS cases undergo a complete medical chart review at the time of report with records re-reviewed and updated every 18–24 months. Data collected include demographic and risk information, insurance status, AIDS-defining illnesses, results of HIV, CD4, and viral load tests, date of initiation and type of antiretroviral therapies, and of prophylaxis against Housing status is collected at diagnosis. Cases were considered to be homeless if the medical record noted that the patient was homeless or if the address recorded was a known homeless shelter, a health care clinic, or a free postal address not connected to a residence . Persons with missing addresses in the medical record were considered to be housed.th and 10th revisions.Documentation of deaths was obtained through weekly review of local death certificates, reports from other health departments, and annual matches with the National Death Index, which includes deaths through 2005. Underlying and contributory causes of death were coded according to the International Classification of Diseases – 9t test for differences in means. The Kaplan-Meier method was used to estimate the distribution of the time from AIDS diagnosis to death among homeless and housed persons; cases not known to have died were censored at the more recent of either the date of their last follow-up or December 31, 2005. The log-rank test was used to assess differences in survival. As with previous studies of AIDS survival, we used all-cause mortality [Differences in the characteristics of homeless and housed persons were assessed using the chi square test for differences in proportions and the ortality -29.A Cox proportional hazards model was used to estimate the independent associations of housing status with mortality. For the multivariable analysis, we included demographic and risk characteristics, insurance status at diagnosis, the AIDS-defining condition (low CD4 count versus an opportunistic illness), the CD4 count at diagnosis, use of antiretroviral therapy (as a time-dependent variable), and prophylaxis against PCP and MAC.To assess the proportionality assumption, we checked for interaction between each risk factor and time since AIDS diagnosis; for highly active antiretroviral therapy, a time-dependent covariate, we assessed interaction with time since start of treatment. Because the risk associated with homelessness increased during the study period (p < 0.05), we calculated the estimated relative hazard (RH) at one, three, and five years after diagnosis. Results did not suggest qualitative changes from harm to protection or from protection to harm; therefore, we also calculated a summary RH for this predictor, averaged over the entire follow-up period.To examine in more detail the factors related to high mortality in homeless people, we compared the five most frequent contributory causes of deaths among homeless and housed AIDS cases, as obtained from the National Death Index.The SFDPH provides supportive housing services to homeless persons who have the most severe or greatest number of chronic medical or psychiatric needs, or both, through the Direct Access to Housing (DAH) program. The program houses people directly from shelters, street living situations, or institutions. Residents must pay rent on a sliding scale of 30% to 50% of their income; those who are ineligible for public entitlements are housed for free. All DAH sites have dedicated case managers and provide medical services that range from an on-site, full-time nurse and part-time, mid-level clinician (e.g. nurse practitioner) to obtaining care at designated health care facilities located near the DAH residences. Supportive housing services were initiated in 1999, although the DAH program database includes move-in dates as early as 1992. The database contains the names, dates of birth, and move-in dates of persons who are housed by the program.To identify homeless AIDS cases who obtained DAH housing, we computer matched the AIDS case registry to the DAH database using the patient name and date of birth as the matching variables. Cases who did not match using these criteria were matched using the soundex code  of the last name, first initial of the first name, and date of birth. All matches were manually reviewed. When available, matched cases were further compared using sex and race. To be classified as a homeless AIDS patient who obtained DAH housing, the move-in date must have been after diagnosis. By matching all AIDS cases to the DAH database, we identified persons who were not originally reported as homeless but received supportive housing. Because the DAH program offers housing only to persons who have been identified by their case manager as homeless, AIDS cases who were housed through DAH were included in the analysis of the impact of housing on survival and considered to have been homeless at the time of diagnosis as long as housing was obtained after the AIDS diagnosis. Such individuals were likely misclassified as housed at AIDS diagnosis or they may have become homeless sometime later.t test for continuous variables. A multivariable proportional hazards model was performed to estimate the independent association of supportive housing with mortality. Obtaining public housing was included as a time-dependent variable to avoid creating a survival bias among those surviving long enough to obtain housing. Included in the multivariable model were demographic and risk characteristics, the AIDS-defining diagnosis (low CD4 count or opportunistic illness), the CD4 count at diagnosis, use of antiretroviral therapy (as a time-dependent variable), and prophylaxis against PCP and MAC. Because there were so few cases with private insurance, this variable was excluded from the model. The proportionality assumption was assessed using the methods previously described. No statistically significant violations were found.Differences in the characteristics of homeless persons who received housing and those who did not were assessed using the chi square test for categorical variables and the To estimate the increase in average survival time over the first five years in supportive housing, we matched each homeless AIDS case who obtained housing to one control who did not. The cases and controls were matched by date of AIDS diagnosis (plus or minus six months), CD4 count at diagnosis , age at diagnosis (<40 years to ≥40 years), and whether they had injected drugs. Some cases matched with more than one control; in this situation, we selected the control whose date of diagnosis and CD4 cell count most closely matched. To avoid both a survival bias and a potential bias from controls being denied housing because of imminent death, controls were required to survive at least the same number of months from date of diagnosis as the case at the time that the case obtained housing and at least three months beyond the date that the case obtained housing. Follow-up time for cases and controls began the date the case obtained housing.Using the matched sample, we estimated the increase in mean survival time over the first five years after receipt of housing for cases and their matched controls by calculating the difference in areas under the Kaplan-Meier survival curves . The surFigure Of the 6,558 AIDS cases included in this analysis, 641 (9.8%) were homeless at diagnosis. Homeless cases were more likely to be women or transgender, less than 30 years old, African American, and injection drug users, to have public health insurance or to be uninsured, and to be less likely to be aged 50 years or older, or to be receiving antiretroviral therapy than were the housed cases , injection drug use among persons other than men who have sex with men (MSM) , injection drug use among MSM , heterosexual contact , having public or no health insurance at diagnosis , and having an opportunistic illness as the AIDS defining diagnosis . Use of antiretroviral therapy, prophylaxis against PCP, and higher CD4 counts at diagnosis were all associated with decreased risk of death . The characteristics of persons who received housing and those who did not were similar except those who received housing were older Table .Of the 676 persons characterized in Table To assess the possible effect of misclassification due to some housed patients not being initially coded as homeless in the AIDS registry, we repeated the multivariable Cox proportional hazards regression excluding these 35 cases. The RH for receiving housing (0.29) was similar to that found in our main analysis (0.20), although with this smaller sample the 95% CL included one .It is possible that unmeasured characteristics could explain the 80% reduction in mortality from supportive housing, and we determined the conditions that would be needed for this to occur (see Appendix). Specifically, we considered binary confounders of prevalence from 10% to 90% and correlations with not receiving housing that ranged from 0.1 to 0.5. For each combination, we calculated the strength of the association between the omitted confounder and mortality that would completely explain the reduction. In one scenario, we found that an unmeasured confounder affecting 70% of the population and correlated at 0.5 with not receiving supportive housing would be needed to cause a nine-fold increase in mortality to explain the apparent protective effect of receiving housing.We identified 49 case-control pairs. The restricted mean survival time during the first five years of follow-up was 57.2 months  for the housed cases and 42.5 months  for the matched controls, resulting in an average gain of 14.7 months. At an approximate cost of $1,000 per month, the average cost of housing per year of life saved was $ 46,800 .Homeless persons with AIDS had significantly worse survival than housed persons, and the provision of housing after AIDS improved survival. These findings have important policy implications given that supportive housing is a feasible and affordable intervention.Several factors associated with homelessness are likely to have contributed to the poorer survival in this group, including drug use, serious mental illness, inadequate use of health care, and poor adherence to medications. Consistent with prior studies, antiretroviral use was lower among homeless compared to housed AIDS cases ,18,21. AInjection drug use was more common among homeless than housed persons and was an independent predictor of mortality in our study as well as in others ,33. InjePersons with heterosexually acquired HIV were at increased risk of death. This finding is consistent with some ,38 but nPersons lacking private health insurance had an increased risk of death. This finding is supported by other studies of HIV-infected persons ,41 and mPrior studies have shown that housing the homeless, including those with mental illness and substance abuse problems, is feasible -48 and cThis study has several limitations. We defined an individual as homeless at diagnosis based upon information in the medical record. It is possible that persons with unstable housing gave an address at the time they were diagnosed that reflected a temporary housing situation, such as staying with a friend or relative, and would have been misclassified as housed. Also, an individual who was stably housed at diagnosis could have become homeless at a later date. Similarly, someone who was homeless at diagnosis could have subsequently received housing. All of these scenarios would have resulted in minimizing the differences in survival between the housed and homeless groups.Although few AIDS cases are unreported, we investigated the possibility that differences between reported and unreported cases could have biased our results. The AIDS surveillance system is evaluated annually for completeness of reporting. This is done at selected sites where ICD-10 codes that correspond to HIV, AIDS, and HIV-related conditions are used to identify persons who may have HIV. The list is matched against the HIV/AIDS registry to identify persons who may have been missed. The medical records of persons who did not match with the registry are reviewed to identify persons with HIV/AIDS. Any missed cases are reported and the reporting source is listed as coming from the evaluation. We examined characteristics of cases that were initially not reported but later found during annual evaluations of the surveillance system for the years 1996 through 2002. Missed cases were significantly (p < 0.05) more likely to be housed, white, alive at diagnosis, and to have private health insurance (data not shown). Thus, in order for unreported cases to have biased our results, these cases would have to have worse survival than the reported housed cases, a scenario that we believe is unlikely. Missed cases may impact the generalizability of our findings but because AIDS case reporting is so complete, such an effect would be small.In our analysis we used all cause mortality. We know that homeless persons are more likely to die from non-AIDS-related causes than are housed persons. To assess the impact of using all cause mortality, we excluded persons whose primary cause of death was not HIV/AIDS and conducted another Cox proportional hazards model with this restricted dataset. Our findings were essentially unchanged .As with any nonrandomized comparison of an intervention, the most significant limitation to our analysis is the possibility that persons who were housed were not equivalent to those who remained homeless in unmeasured, or measured but inadequately modeled, characteristics. In particular, if those who received housing were more likely than those who were not housed to survive even if they did not receive housing, the validity of the comparison would be undermined. Several factors argue against this outcome applying to this study. First, the supportive housing program seeks to house people with the greatest medical and/or psychosocial need. Second, the comparisons between housed and not housed persons showed the groups to be remarkably similar. The strongest difference was that the housed group was more than twice as likely to be aged 50 years or more, a strong predictor of worse survival, and corroborating evidence that the program houses persons in greatest need. Persons who were homeless at diagnosis may have received housing subsequently from sources other than the DAH program, which would have caused underestimation of the effect providing supportive housing has on mortality. The results of the sensitivity analysis indicate that it is unlikely that unmeasured confounding could account for our findings.Although this study used a population-based sample of persons with AIDS, the findings may not be representative of persons with AIDS outside of this geographic region. In San Francisco, HIV is overwhelmingly a disease of MSM. Although this risk group still accounts for the majority of cases nationwide, heterosexual injection drug users and heterosexual partners of injection drug users account for a larger proportion of AIDS cases elsewhere than occurs in San Francisco.The annual costs per person housed are comparable to those reported from a multisite study of supportive housing for HIV-infected persons  and the This study presents observational data showing a survival benefit from supportive housing. Only a randomized controlled trial could definitively demonstrate that supportive housing reduces AIDS mortality but the follow-up time required for such a study would make it difficult to complete. In the absence of such trial data, we believe that the strengths and plausibility of our findings demonstrate the need to make housing programs a priority for persons with AIDS. Unfortunately, the major federal program for the care of HIV-infected persons, the Ryan White CARE Act, explicitly restricts localities from using funds for long-term housing. Policy makers should recognize that supportive housing can be a cost-effective intervention for reducing mortality in persons with AIDS and provide the mechanisms necessary to ensure that persons in need may receive its benefits.The authors declare that they have no competing interests.SS contributed to the conception and design of the study, data analysis and interpretation. She drafted the manuscript and provided critical review for important intellectual content of the manuscript and participated in all aspects of the data analysis. She had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. LH contributed to the data analysis and interpretation and critical revision of the manuscript. EV contributed to the data analysis and interpretation and critical revision of the manuscript. AV contributed to data analysis and interpretation and review of the manuscript. JB contributed to the acquisition of the data, critical revision of the manuscript, and administrative and technical support and supervision for the housing program. MK conceived the study design, contributed to the data analysis and interpretation, and provided critical review for important intellectual content of the manuscript. All authors read and approved the final manuscript.β1 is zero. Then β2, the coefficient or log-RH for the unmeasured confounder, has to be approximatelySuppose that the true RH for the factor of interest, after adjustment for the unmeasured confounder, is actually 1.0, or equivalently the true regression coefficient b1 is the confounded estimate of β1, f1 and f2 are the prevalence of the primary predictor and unmeasured confounder respectively, and r is the correlation between them.where The pre-publication history for this paper can be accessed here:


To the Editor: The Commonwealth of the Northern Mariana Islands (CNMI), a group of northern Pacific islands in political union with the United States, was exempt from US labor laws until 2007. This exemption attracted business opportunities, which led to a high demand for guest workers. The Centers for Disease Control and Prevention advises the US Citizenship and Immigration Services of vaccination requirements for those applying for immigration and work visas before the applications are approved  according to manufacturer’s instructions. For measles and rubella, samples with optical density (OD) values >0.2  indicated protective immunity and samples with OD values <0.1 were suggestive of no protection  and rubella  was lower than the proportion immune of all other workers combined , but the difference was only significant for measles . When coA limitation of our work is that the sample may not be representative of the CNMI guest worker population overall. Only 27% of guest workers in the CNMI are from China, and 43% are from the Philippines , whereas in our study 73% of guest workers were from China, and 23% were from the Philippines. Also, no men were recruited for the study yet men represent 19% of guest workers from China , so our findings should not be extrapolated to this group.,China and the Philippines report 94% and 92% childhood immunization coverage with 1 measles vaccine, respectively (,More than 8,000 female workers from China were in the CNMI during the period of this survey, and as many as 2,000 may have been susceptible to measles, which would have facilitated sustained transmission if the virus had been introduced. Several studies have shown that unvaccinated persons are clustered geographically or socially and may be at increased risk for measles or rubella outbreaks (


South Africa has the largest HIV/AIDS epidemic of any country in the world.National antiretroviral therapy (ART) policy is examined over the period of 1999 to 2008, which coincided with the government of President Thabo Mbeki and his Minister of Health, Dr Manto Tshabalala-Msimang. The movement towards a national ART programme in South Africa was an ambitious undertaking, the likes of which had not been contemplated before in public health in Africa.One million AIDS-ill individuals were targeted to be enrolled in the ART programme by 2007/08. Fewer than 50% of eligible individuals were enrolled. This failure resulted from lack of political commitment and inadequate public health system capacity. The human and economic costs of this failure are large and sobering.The total lost benefits of ART not reaching the people who need it are estimated at 3.8 million life years for the period, 2000 to 2005. The economic cost of those lost life years over this period has been estimated at more than US$15 billion. South Africa is the epicentre of the HIV/AIDS epidemic that is severely affecting nearly all countries in sub-Saharan Africa. In 2008, the Joint United Nations Programme on HIV/AIDS (UNAIDS) estimated that South Africa has the highest number of HIV-positive individuals in the world, with the number of people living with HIV totalling 5,700,000 (CI: 4.9 million-6.6 million). The prevalence rate for adults aged 15 to 49 is estimated at 18.1% (CI: 15.4%-20.9%), and the number of adults aged 15 and older living with HIV at 5.4 million (CI: 4.7 million-6.2 million). Women aged 15 and older living with HIV are disproportionally affected: the figure totals 3.2 million (CI: 2.8 million-3.7 million). The number of children aged up to 14 living with HIV totals 280,000 . And the number of deaths due to AIDS in 2007 was 350,000  [Prior to 1990, the level of HIV/AIDS infection in South Africa was relatively insignificant (less than 1%). The issue of major national importance was the struggle to obtain democratic freedoms, which the majority of citizens were denied by the apartheid governments of the (white) National Party of South Africa. Democracy came in 1994 with the election of Nelson Mandela as the first freely elected President. Significantly, his deputy was Thabo Mbeki, who took over from Mandela subsequent to the 1999 election and continued in the role of President until 2008.Dr Manto Tshabalala-Msimang was appointed Minister of Health in 1999 and had responsibility for health policy, including HIV/AIDS and she continued in that role until 2008. She was a strong political ally of President Mbeki throughout this period.This paper undertakes an assessment of the response of the South African Government to the epidemic over the period, 1999 to 2008. It focuses on one of the most important issues of the epidemic, namely, access to treatment with antiretrovirals (ARVs) in an attempt to explain the efficacy of policies and programmes implemented to address the social, political and economic challenges that widespread and high levels of untreated HIV pose for nations.The first substantive policy action by President Mbeki's government was instigating a national consultative process with the aim of developing a National Strategic Plan (NSP) for HIV/AIDS and sexually transmitted infections (STIs) in 1999. A National AIDS Council was set up to oversee these developments. The NSP 2000-2005 was a rather thin 31-page document, which had four priority areas and attached goals [1. Develop guidelines for the treatment and care of HIV/AIDS patients in health facilities and the community.2. Ensure uninterrupted supply of appropriate drugs for the treatment of opportunistic infections and other related conditions.3. Build capacity of health professionals to provide comprehensive HIV/AIDS, STI and tuberculosis (TB) treatment, care and support.4. Establish strong links between health facilities and community-based support programmes.5. Improve prevention and treatment of TB and other opportunistic infections.Many in civil society perceived the plan as inadequate and timid in its responses, particularly given the lack of financial commitment to achieve the rather modest goals. The Treatment Action Campaign (TAC) was at the forefront of agitating for more resources to be pledged for HIV overall and treatment in particular. AIDS advocates, particularly the TAC, campaigned for a programme to use ARVs for prevention of mother to child transmission (PMTCT), and then for an overall national treatment programme for AIDS that included making ARVs accessible.In July 2002, government established a Joint Health and Treasury Task Team to investigate issues relating to the financing of an enhanced response to HIV/AIDS, based on the NSP 2000-2005. A particular focus of the task team was the treatment component of the NSP, namely, treatment, care and support for those infected and affected by HIV and AIDS.As a result of much political pressure and agitation, in November 2003, the Mbeki government approved the operational plan that provided the structure for a comprehensive response to HIV and AIDS, including a planned national rollout of antiretroviral therapy (ART) to all South Africans and a PMTCT programme, both through the public health system. Until 2003, South Africans with HIV who used the public health system could get treatment for opportunistic infections they suffered because of their weakened immune systems, but could not get ART, designed to specifically target HIV. The plan was ambitious and projected to cost 11.986 billion South African rands over five years.The comprehensive plan included the following characteristics :1. Development of provincial implementation plans to be based on the district health systems within each province.2. Procurement and/or production of necessary medications and consumables at the lowest prices possible.3. Upgrading of the national health laboratory system to handle a significant increase in diagnostic testing and monitoring of patient safety.4. Elaborating an integrated nutritional programme for people living with HIV and AIDS.5. Development of a research agenda to support the programme, including engagement of South African academic centres and research institutions.6. Establishment of a robust system to monitor efficacy of the intervention, adverse drug events, resistance and improvement and coordination of patient information systems.7. Development of staffing norms and standards for the delivery of antiretroviral therapy and assessment of human resource needs, including health system managers, clinicians, nurses, pharmacists, nutritionists and counsellors.8. Creation of a programme management unit to coordinate the implementation of the programme and recommendations for its functions, structure, staffing and cost.9. Development of a communications plan for health providers and the public, including what to expect from the proposed treatment programme.10. Development of a detailed five-year programme budget and an estimated 10-year budget to implement the treatment programme.11. Development of a detailed implementation schedule.To be successfully implemented, the comprehensive plan needed significant additional investments in the public health system to improve its capacity, in particular, its human resource capacity. The comprehensive care and treatment plan was to be delivered in an integrated fashion within the public health system.Yet more than half of the total expenditures envisaged in the plan were to go toward emphasizing prevention and promoting healthy lifestyles. In the absence of a cure for AIDS, effective prevention strategies are critical. These include provision of: barrier methods, voluntary counselling and HIV testing, PMTCT, post-exposure prophylaxis, syndromic management of sexually transmitted infections, TB management, and a large and sustained information, education and communication campaign.The comprehensive plan proposed to build on testing programmes to diagnose HIV and measure disease progression so that proper care and treatment regimens could be implemented. That included: ongoing medical services to provide treatment for opportunistic infections associated with HIV and ultimately, the provision of ARVs to arrest the progression to AIDS; an extensive nutrition intervention; and programmes to integrate the provision of medical care with traditional methods of healing. A full range of community support services was also contemplated, including:, counselling; adherence support groups; community mobilization efforts to reduce stigma and discrimination; patient transport; home- and community-based care; and, when necessary, palliative care.3, the commencement of treatment with ARVs. The aim was to achieve universal (100%) treatment coverage of new AIDS cases by the end of 2007/08. The estimate was that just more than 1 million people would be on ARVs.To take but one measure, Table It was an ambitious plan, the likes of which had not been attempted before in a resource-challenged environment like South Africa. In total, 22,500 new health workers would be recruited over the five-year period, including 1,100 new doctors, who are critical to management of ARV treatment for AIDS-ill patients.The resources available over the period, 2000-2008, came from two sources: internal and external. The internal resources included national and provincial government contributions, as well as those of private individuals. The external funds came from three main sources: multilateral organizations, foreign governments, and private foundations and other non-governmental organizations. The major external contributors included the Global Fund to Fight AIDS, Tuberculosis and Malaria, the United States President's Emergency Plan for AIDS Relief (PEPFAR) and the European Union.Table The system of governance in the South African federal system involves the national government primarily raises taxes and distributing these taxes to provinces in tied and untied grants for service delivery purposes. So national government controlled most of the available resources and overall policy direction for HIV/AIDS, but relied upon provincial governments to deliver services. Provincial government also engaged in discretionary spending on HIV/AIDS. The ambitious plan was projected to cost 11.986 billion South African rands, or US$1,915 million at prevailing exchange rates, over five years.There are three main types of HIV and AIDS specific allocations. These are:1. The budget of the HIV and AIDS Directorate in the national Department of Health .2. HIV/AIDS interventions coming from national government to provinces .3. HIV- and AIDS-specific funds in provincial budgets .Conditional grants are disbursements to provinces on the condition that they be spent on services or interventions specified by the national government. Spending of the funds is limited to specific areas identified by the national government for which provinces must develop appropriate business plans.As shown in Table Over the five years of the comprehensive plan, actual government spending totalled $1,602 million as opposed to projected budgeted spending of $1,915 million. This represents an under spend of $313 million. The main reasons for the under spend was the performance of provinces in being unable to implement the required health system changes in a timely manner and an inability to hire sufficient health workers to enable the ambitious programme goals to be achieved.South Africa has an extensive and sophisicated private health care system. The comprehensive plan did not incorporate nor attempt to engage with the private health system.The Global Fund, established in 2002, is a partnership between governments, civil society, the private sector and affected communities. It has become the main external source of finance for programmes to fight AIDS, tuberculosis and malaria, with approved funding of US$11.4 billion for more than 550 programmes in 136 countries. It provides a quarter of all international financing for AIDS globally. The Global Fund's contributions to South Africa since 2003 have totalled $228.5 million. This amount has been channelled through the national government budget, so it has inflated the supposed contribution of the national government to internal funding towards HIV/AIDS.The largest single increase in external funding for HIV/AIDS came from the US Government via President George Bush's 2003 initiative, PEPFAR, as shown in Table South Africa is one of PEPFAR's 15 focus countries, which collectively represent approximately 50% of HIV infections worldwide. Under PEPFAR, South Africa received $89.3 million in fiscal year (FY) 2004, $148.2 million in FY 2005, $221.5 million in FY 2006, $397.8 million in FY 2007 and $590.9 million in FY 2008 to support comprehensive HIV/AIDS prevention, treatment and care programmes. This is a total of $1,447 million over the past five years.Objective criteria provide evidence with which an evaluation of the effectiveness of responses within countries can be made. In the case of South Africa's comprehensive plan, these data indicate that the responses to ameliorate the epidemic have been only partially effective.Given that the majority of HIV-infected individuals interact with the public health sector, then an examination of the progress in the biggest HIV-related programme, the National ARV Treatment Programme, should be instructive.There are no accurate estimates of the total number of people on antiretroviral treatment because of such factors as the national Department of Health's poor monitoring system (except for the Western Cape province), no province records, loss to follow up and deaths.The Joint Civil Society Monitoring Forum was formed in June 2004 and is made up of several leading civil society and private sector organizations. The forum is dedicated to monitoring the implementation of the operational plan. Its latest estimate is that in June 2007, a total of 257,108 people were on treatment [This contrasts with the Department of Health's assertion that that the estimated number of people needing treatment in South Africa was 764,000 by the middle of 2006, of which a total of 353,945 were enrolled in the ART programme and 273,400 were initiated on the programme in 2006. In 2007, 889,000 people needed treatment, of whom 488,739 enrolled and 371,731 were initiated on the ART programme [The World Health Organization's and UNAIDS' midpoint estimate was that 206,500 people living with HIV (PLHIV), or equivalent to 21% of the number estimated to be in need, were on ART in South Africa as at December 2005. These values should be treated with caution given the South African Government data upon which the estimate was made .An estimate by a major supplier (Aspen Pharmacare) of ARVs delivered to the Department of Health is that about 350,000 people were on treatment as at February 2008 [No comprehensive methodical analysis of the number of people on ARVs in the private health system has been done. The Joint Civil Society Monitoring Forum estimates that in the order of 100,000 people were receiving treatment through the private sector in 2007 . This esWhatever the accurate numbers are, the uptake of ARVs has fallen well short of anticipated levels. Many hundreds of thousands on South Africans in need of ARVs are still not receiving them or have died whilst waiting for them, despite the comprehensive plan.An estimate of the loss of life years that resulted from the ineffectual policy responses of President Mbeki and Minister Tshabalala-Msimang was recently made. The study compared the number of persons who received ARVs for treatment and PMTCT transmission between 2000 and 2005 with an alternative of what was reasonably feasible in the country during that period. It was estimated that more than 330,000 lives, or approximately 2.2 million life years, were lost because a timely ARV treatment programme was not implemented in South Africa over that period. Some 35,000 babies were born with HIV, resulting in 1.6 million life years lost by not implementing a PMTCT programme using the ARV drug, nevirapine. The total lost benefits of ARVs not being accessible to all in need are estimated at 3.8 million life years for the period, 2000-2005 .The value of a human life or one additional year of a human life is inherently controversial. The benefit of the provision of ARVs is that it stops PLHIV dying prematurely. It also has another advantage in that it generally improves the quality of life of those years gained.The above estimate of life years lost does not take into account the value of those life years to society. Given that the costs of treating and also of not treating PLHIV with ARVs has been made and an estimate of the number of life years has also been made, then it is logical to attempt to value the benefits that would have accrued to South African society if those lives and life years had not been lost.There are two main methods used in measuring the value of a human life: human capital approach and willingness to pay (WTP) ,11. Bothper se), it is his or her contribution to the rest of society which is lost and should be valued.Some implications are that the young are generally worth more than the old, although the very young, who have yet to incur education and upbringing costs, may have quite a low value. High-income individuals have a greater value than the poor. Questions that arise in using the human capital approach are whether gross or net earnings, or gross earnings less consumption, should be used. The arguments are that although with death an individual ceases to be a member of society  have negative returns so that any lengthening of their lives represents a loss.• Consumption benefits of health care are not included.• Earnings do not reflect social productivity because if an individual dies, his or her position would be filled by someone else so that the loss of production will be related to adjustments necessary, not the earnings of the replaced individual.The other main approach is based on willingness to pay (WTP) to reduce the risk of death. Health care projects that save lives do not (except in the very short term) save specific lives, but rather reduce the risks faced by all or a subset of the population. Hence, it may be possible, by asking or by carrying out appropriate experiments, to ascertain the WTP of relevant groups for a reduction in the risk of death from a particular cause.Related approaches use market prices to infer the value individuals place on reductions in risk. For example, the amounts individuals spend on life-protecting safety devices or on safer forms of transport may be used to infer valuations. Another approach is based on occupational risk: the argument is that measurement of the monetary compensation (higher wages) received for high-risk occupations will allow us to infer valuations . If an iBesides saving lives, health care offers benefits of many kinds. It may reduce pain and discomfort, increase mobility and generate peace of mind. How might these various effects be valued?The approaches taken to answering this question mirror to a large extent the approaches taken to the valuation of life. A human capital approach would find the present value of the difference in lifetime earnings between those receiving and those not receiving treatment. The assumption behind this is that all the adverse effects of a medical problem will show up in earnings. A WTP approach would try to find out, by asking or by experiment, what individuals are prepared to pay to avoid the effects of a particular condition or to reduce the risks of suffering these effects. Observation of market behaviour  may allow inferences to be drawn about WTP to avert certain types of effects. Given a societal perspective, there is a maximum WTP that represents the benefits (utility) that all individuals would expect to achieve if they had access to a particular health care service.Next, it is necessary to assess the resources required to provide that service (cost) and to compare this to the total value to society (benefit) from having access to a health care service. In the societal perspective, the benefits of improved health care are comprised of the benefits to the affected individuals , as well as the benefits that the rest of society can expect to achieve from knowing that the service is available .One objective may be to determine the value to an individual or community of a particular good or service. Then it is necessary to evaluate the value of the service to all of those who may benefit from this service (both users and non-users) and to compare this to the costs. If an individual or a community agree that they want to give up their financial resources to pay for a good or service , then it can be concluded that the benefits exceed the costs. The benefit-cost ratio is greater than one and the intervention is recommended. However, if individuals or a community indicate that they are unwilling or unable to give up the financial resources to provide a health service, then the costs exceed the benefits. If the service has a benefit-cost ratio of less than one, then intervention is not recommended.To overcome philosophical objections and methodological difficulties in valuing life and life years, it has been assumed here that the value of one year of human life is equivalent to the value of per capita South Africa's GDP in the year of that human life. That is, the value of one year of human life is equivalent to the value of economic output for an average South African during one calendar year.The economic cost of those 3.8 million lost life years over the period, 2000 to 2005, has been calculated in Table Given that the actual expenditure by government on HIV/AIDS programmes over the same period was $822.78 million  relative insignificance. Yet a discernable shift from denial to recognition of the epidemic was seen in President Mandela's public references to the issue, unlike his predecessors. Unfortunately, the level of infection was rapidly growing. In 1993, the HIV prevalence rate among pregnant women was 4.3%, which had increased to 12.2% by 1996 and to 22.4% by 1998 .In 1999, newly installed President Mbeki stated that the drug, AZT, used in the prevention of mother to child transmission treatment (PMTCT), was toxic and dangerous to health and that the government would not be provide it in the public health system . He wentIn April 2000, in his opening speech to the International AIDS Conference in Durban, President Mbeki avoided reference to HIV and instead focused on the problem of poverty, fuelling suspicions that he saw poverty, rather than HIV, as the main cause of AIDS. The basis for President Mbeki's denialism and reversal of government policy positions were never clearly enunciated by the man himself, although Nattrass discusses the many and varied hypotheses, clearly favouring the President's belief in his exceptionally high option of his intellectual capacities which he believed outranked those of medical and social "experts" in the field ,17There was now clear evidence that the South African Government was moving from recognition back to denial about the epidemic. At that time, most political leaders in sub-Saharan Africa would have been considered to be in a state of denial, but in the process of moving toward recognition as evidence of the impacts of the epidemic were becoming increasingly hard to avoid . PresideYet there were also signs of hope. President Mbeki's government was applauded by AIDS activists for its successful legal defence against action brought by multinational pharmaceutical companies in April 2001 of a law that would allow local production of cheaper medicines. Initial prices of ARV drugs were extremely high for a middle-income country like South Africa. It was only in 2002 and 2003 that prices began to moderate sufficiently to allow low-income countries to seriously consider universal treatment options. People in South Africa obtain medicines either through the public health system or from private dispensing doctors and pharmacies. Patients receive medicines for free from the public health system, but have to put up with long waiting times and inconsistent and missing service. Private sector patients are usually insured by a medical scheme to which they pay a monthly premium.In 2002, South Africa's High Court ordered the government to make the ARV drug, nevirapine, available to pregnant women to help prevent mother to child transmission of HIV. Despite international drug companies offering free or cheap antiretroviral drugs, President Mbeki's government restricted access to them and remained extremely hesitant about providing treatment for people living with HIV.Despite the AIDS denialism of President Mbeki and Minister Tshabalala-Msimang, significant government financial resources were mobilized. However, these resources were insufficient despite the efforts of the South African Government and the initiation of PEPFAR after the announcement of the comprehensive plan. Less than half of the people requiring ARVs are currently receiving them. Some of the reasons for this lack of effectiveness are now briefly discussed.Possible explanations for the slow and ineffective responses include:"Positive" political discussion and action about HIV is relatively scarce in South Africa. Successful country responses to the epidemic, as in Uganda and Senegal, have had in common the existence of political will or commitment from the head of state downwards. Stigma and discrimination lie behind the denial and silence from South African political leaders. As long as HIV is not discussed openly, denial of the problem will exist. The importance of leaders in addressing HIV to overcome silence and stigma is critical. Without "positive" political dialogue, the problems that arise from HIV infection will continue to be surrounded by ignorance, myths and, of course, denial that the problem exists in the first place.The effort of government toward implementing the comprehensive plan was damaged by the attitude towards HIV/AIDS and its treatment by Minister Tshabalala-Msimang and President Mbeki. Tshabalala-Msimang's administration as Minister of Health was controversial because of her reluctance to adopt a public sector plan for treating AIDS with ARVs. She was called "Dr Beetroot" for promoting the benefits of beetroot, garlic and lemons, as well as focusing on good general nutrition, while referring to possible toxicities of ARVs. She followed an AIDS policy in line with the ideas of President Mbeki, her political ally.Minister Tshabalala-Msimang placed her emphasis on broad public health goals, seeing AIDS as only one aspect of that effort and one which, because of the financial costs of treatment, might impede broader efforts. She was not convinced by the mounting economic evidence that AIDS is such a burden on the public health system that treating it would actually free up costs. She was in charge of the ARV rollout, but continued to emphasize the importance of nutrition and to urge others to see AIDS as only one problem among many in South African health.At the International AIDS Conference in Toronto, Canada, on 18 August 2006, Stephen Lewis, the United Nations Special Envoy for AIDS in Africa, closed the conference with a sharp critique of South Africa's government. He said South Africa promoted a "lunatic fringe" attitude toward HIV and AIDS, describing the government as "obtuse, dilatory, and negligent about rolling out treatment" .A lack of resources, both physical and human, to improve the health of the population existed prior to the comprehensive plan. The infrastructure required for the increased levels of health activities was often lacking. Hospitals, clinics, health staff and consumables were commonly in short supply before the epidemic. The epidemic merely places more pressure on resources despite additional funding being available.There are insufficient health workers in South Africa to enable normal health care needs to be met. The maldistribution and inadequate numbers of health workers are causing delays in expanding ARV treatment. Waiting lists for treatment are growing at clinics as a result of staff shortages. Even with "task shifting" from doctors to nurses to community workers, insufficient staff means that ARV diagnosis, treatment and monitoring is restricted. It has recently been suggested that an extension of this community-based pathway is possibly the only means by which the increasing ARV case loads can be adequately managed .There is a general shortage of health workers in South Africa. The shortage is clear in the number of vacant public health worker posts, which show that out of a required workforce of 196,585, 65,432 posts were unfilled .This shortage is further exacerbated by the highly uneven distribution of health workers between the public and private sectors. The ratios of medical practitioners to population in public and private sector are, respectively, one per 4,219 and one per 602 [The private health sector in South Africa is highly formalized, well developed and resource intensive. Health professionals are attracted from the public to the private sector by higher remuneration rates, more favourable working conditions and better access to advanced technology .In addition to facing shortages of staff throughout the public health system, South Africa faces additional challenges in retaining health workers due to increasing levels of migration. In 2006, the number of South African health workers working abroad totalled 23,400: 8900 doctors, 6800 nurses and 7700 other health workers .Given the skills shortage in health care, the number of new graduates produced annually is a possible key area for intervention. In South Africa, there are 401 nursing education institutions and eight medical schools. The average number of enrolments per medical school per annum was 200 in 2007, which equates to approximately 1600 enrolments nationally . DoctorsThere are three main streams through which nurses are trained: universities, nurse training colleges and two-year bridging courses. The bridging courses enable enrolled nurses and nursing auxiliaries to train and register as professional nurses. In 2006, the total number of nurses graduating from universities and training colleges totalled 2027 .Clearly, the mobilization of the private sector is critical to achieving the goals of the comprehensive plan. Present numbers of health workers are insufficient and present trends for training new and replacement workers are clearly inadequate. Until the issue of resource mobilization in health, especially human resources, is adequately addressed, the goals of the comprehensive plan will prove difficult to achieve.Progress in addressing the HIV/AIDS epidemic has been made in South Africa, which is one of the few countries in sub-Saharan Africa with the resources to provide ART for all of its people with AIDS. However, the majority of patients who require ART are still not receiving it. As a result, in most hospitals in South Africa, it is still common to see patients without access to ART dying of opportunistic infections, including TB. There were an estimated 360,000 AIDS deaths in 2007. This has brought the cumulative number of AIDS deaths to 2.2 million people .The estimated number of deaths as a result of an inadequate policy response between 2000 and 2005 was that more than 330,000 lives, or approximately 2.2 million life years, were lost because a timely ARV treatment programme was not implemented in South Africa over that period. Furthermore, 35,000 babies were born with HIV, resulting in 1.6 million life years lost by not implementing a PMTCT programme using the ARV drug, nevirapine. The total lost benefits of ARVs are estimated at 3.8 million life years for the period, 2000-2005 .The economic cost of those 3.8 million lost life years over the period, 2000 to 2005, through premature death over the six-year period is more than $15 billion.This paper has attempted to explain HIV/AIDS policy responses and the resources available to achieve the goals over the period, 1999 to 2008. An explanation of the reasons behind the failure to implement the national ART programme in a timely and effective manner from 2003 onwards is offered, as is how the recent progress towards universal ART coverage might be improved and/or achieved.A new five-year National Strategic AIDS Plan 2007-2011  has beenThe author declares that he has no competing interests.JG conceived the study and its design, undertook the analysis, and wrote the manuscript.


The HIV/AIDS epidemic has continued to pose significant challenges to countries in Sub-Saharan Africa. Millions of African children and youth have lost parents to HIV/AIDS leaving a generation of orphans to be cared for within extended family systems and communities. The experiences of youth who have lost parents to the HIV/AIDS epidemic provide an important ingress into this complex, evolving, multi-dimensional phenomenon. A fundamental qualitative descriptive study was conducted to develop a culturally relevant and comprehensive description of the experiences of orphanhood from the perspectives of Ugandan youth. A purposeful sample of 13 youth who had lost one or both parents to HIV/AIDS and who were affiliated with a non-governmental organization providing support to orphans were interviewed. Youth orphaned by HIV/AIDS described the experience of orphanhood beginning with parental illness, not death. Several losses were associated with the death of a parent including lost social capitol, educational opportunities and monetary assets. Unique findings revealed that youth experienced culturally specific stigma and conflict which was distinctly related to their HIV/AIDS orphan status. Exploitation within extended cultural family systems was also reported. Results from this study suggest that there is a pressing need to identify and provide culturally appropriate services for these Ugandan youth prior to and after the loss of a parent(s). In Sub-Saharan Africa, a significant and catastrophic long-term outcome of the HIV/AIDS crisis has been the emergence of a large population of children and youth who have lost one or both parents to this disease. In this region, approximately 12 to 14 million children have lost at least one parent to HIV/AIDS, resulting in the highest prevalence of this category of orphans worldwide  was still in hospital, the relatives from my mother's side were trying to fight for our property, wanting to take everything because even mother was sick. They were praying hard that father never recovers so that they [could] take the house-hold property.Other property left by the dead parent for the remaining children was perceived as an opportunity by other clan members to take advantage of the orphan's vulnerable position and to claim these limited resources. One youth illustrated this scenario with the following description:But there were some who were happy because he [father] was going to die and leave this property. The moment he died, we started seeing some clan members that we didn't even know. Some of them had never come home to visit us and we didn't even know them. Moreover, you saw that they wanted to sell most of the property. Eventually we [the siblings] realized that they were preparing to sell it to some rich man.Following the death of their parent(s), 12 of the 13 youth moved in with extended family. Most of these living situations were described as very difficult circumstances marked by discrimination, unequal treatment compared to other children in the home, stigmatization and again, experiencing not having basic needs being met. This experience was similar between HIV-positive and HIV-negative youth although the HIV-positive youth described more severe discrimination and, at times, disclosed experiencing overt physical abuse. One 15-year-old HIV-positive female youth disclosed:[My new caregiver] started abusing me all the time saying, 'That girl is a grown up and she is even a prostitute.' I wanted to go back to school but she refused because she wanted me to stay home and look after her children. And one day she threatened to send me away and threw out my property. And sometimes she beats me. When she beats me, she uses a lot of force.However, not all HIV/AIDS orphaned youth had exclusively negative experiences with extended relatives. Two of the paternally orphaned youth described having a family member that they trusted and who remained an advocate for them despite very difficult living situations.One type of stigmatization that was repeatedly described by the orphaned youth was referred to in the local language of Luganda as "okulangira." This is a verbal exchange where one person is reminded in a derogatory manner about his/her inferior societal position. "Okulangira" in this context was described as when new caregivers announced to the community that the youth's parent had died of HIV/AIDS. It was perceived that the caregivers did this to invoke gratitude from the child for undertaking the task of caring for an HIV/AIDS orphan. Another type of stigma included being perceived as HIV- positive by peers, school mates or community members because the parent had died of HIV/AIDS. In cases where the individual was actually HIV-positive, youth stated that relatives or caregivers would often disclose this confidential information to the community without their expressed permission. These reported experiences of stigma led to relationship conflicts and frequent isolation for the orphaned youth. As one participant shared:And now all the clan people, the relatives, are isolating us. They are running away from us. Everyone has abandoned us. Because those relatives do not even want to come to our home anymore. They are saying, 'Those children are moving corpses. We are about to bury them.' And this caused a lot of pain to me.This qualitative study was conducted with a homogenous, purposeful sample of youth receiving services specifically for HIV/AIDS orphans through NGO organizations in Uganda. While the sample size of this study is small, data saturation occurred by focussing interview questions on a narrow phenomenon. Data credibility was achieved through triangulation of multiple types of data and the use of multiple researchers, including two professionals with expertise in mental health, HIV/AIDS orphans and cultural knowledge of Uganda. Data dependability was achieved by involving the full research team in the analytic process and in the double-coding of multiple transcripts to ensure that the most relevant concepts were identified. The findings of this study will only be transferable and of relevance to individuals working with adolescent HIV/AIDS orphans in Sub-Saharan Africa who regularly access support from NGOs.However, the sample size of the current study necessitates caution when extrapolating findings to broad populations of youth orphaned by HIV/AIDS who are involved in NGOs. Additionally, the potential influence of NGOs providing informal talk-therapy on the orphan narrative is an important consideration. While many youth may have benefited from the talk-therapy provided at the NGO, the possibility remains that the recollection of orphaning experiences has been influenced. Specifically, the experience of receiving empathic and caring responses from NGO staff in response to telling personal orphan narratives could affect how subsequent narratives are told. The possibility of receiving monetary support through an NGO also has the possibility to effect their narratives in a way that inadvertently rewards stories of hardship or sensationalism. However, services provided through NGOs in support for HIV/AIDS orphans are one of the few available resources to this group of vulnerable children and youth given the significant limitations for domestic funds or available health infrastructure in Uganda .The loss of a parent as a child or an adolescent is significant in any culture; however the onset of parental illness described in the current study marked the beginning of a series of unwanted impending changes for many of the study participants. The effects of parental HIV illness on children and youth has been studied primarily in a western context with results uniformly showing that children and youth experience significant levels of psychological distress during this period .Through structural equation modelling, Rotherham-Borus and colleagues  examinedWhile findings from western literature suggest that youth of HIV-positive parents experience psychological difficulty at the time of parental illness but have better long-term outcomes with psychological support, it is difficult to generalize this data to the current study for several reasons. Most notable are differences for African youth where death is processed differently within the cultural context such that they are often unaware or uncertain of the realities of the parental HIV/AIDS illness and death. In a recent qualitative study by Withell  where HIUgandan youth in the current study also described experiencing psychological distress with the perceived loss of childhood and the subsequent need to prematurely assume adult roles. This may be referred to as a process of "parentification." This phenomenon was reported throughout the time of parental illness as well as into the period of time living with extended relatives. Although little African data is available in this regard, work done by Murphy and colleagues  in Los ASeveral of the youth alluded to being exploited in their new home situations following the death of a parent(s). Examples were cited describing unequal workload distribution within the home or orphaned youth being treated more harshly compared to other children. Specifically, orphaned youth described having to leave school after moving in with the extended family whereas other children in the home continued their education. While the psychological distress that was reported by youth after the loss of a parent(s) can not be disputed, the notion that orphaned children and youth have been frankly exploited as a ubiquitous phenomenon has been challenged recently in the literature. Work done by South African researchers  attempteIn this small sample, the reported loss of educational opportunities within the context of parental illness or death was a salient and concerning theme. The long-term impact of not completing education or some type of skills training is arguably of grave importance in a low-income country such as Uganda where employability and income generation is often associated with basic survival. Some African studies have attempted to better understand the school status of HIV/AIDS orphaned children and youth. A large scale retrospective study conducted in Malawi by Floyd and colleagues  comparedData in the current study revealed limited educational opportunities for HIV/AIDS orphans, which has generally been supported by previous research findings. A sub-analysis regarding gender and missed educational opportunities could not be conducted in the current study given the limited sample size. All of the orphans had lost educational opportunities, however the magnitude of these losses was not explored. This information may lead to important findings such as identifying those most at risk of school removal as well as subsequent long-term developmental trajectories associated with school losses. An important consideration that has not been previously studied is the potential experience of social poverty for youth who are forced to leave school or for those who experience stigma related to their HIV/AIDS orphan status in this setting. The social cohesion within the educational setting may be an important buffer for orphaned youth, particularly for ones who experience "okulangira" - social exchanges where orphaned youth were stigmatized by being reminded of their inferior social status in the extended family or community. The potential additive effects of social erosion within the traditional African surrogate family system due to multiples stressors and strains associated with the HIV/AIDS crisis may make orphaned youth twice or thrice vulnerable with respect to social losses. In a study by Cluver and Orkin , South AThe experience of becoming an HIV/AIDS orphan in the current study is a dynamic process marked by several difficulties and challenges for Ugandan youth. The experience of orphanhood begins with parental illness, not death. The implications of impending parental death to HIV/AIDS herald the onset of several struggles including poverty, lost educational opportunities, living with extended family systems marked by difficulty, potential exploitation within their homes and culturally specific forms of stigma related to their HIV/AIDS orphan status making these youth twice and thrice vulnerable. While there is much more work to do in attempting to better understand this heterogeneous population and phenomenon, it is clear that a moral and ethical imperative exists to better understand how to provide meaningful support and care for a vulnerable population during and after the tragedy of losing a parent(s) to HIV/AIDS.The authors declare that they have no competing interests.SH, SJ and RK participated in study design. RK and JS participated in data collection. SH, SJ and RK conducted data analysis. SH and SJ drafted the manuscript. SH, SJ, JS and RK reviewed and edited drafts of the manuscript.


HIV/AIDS is a critical concern in South Africa, where extreme poverty and gender issues are major determinants of health. A comprehensive home-based care programme is needed to lessen the burden placed on the caregivers of those suffering from HIV/AIDS. The purpose of this study was to explore and describe the challenges faced by people who are living with HIV/AIDS and by their caregivers in resource-poor, remote South African villages.In-depth interviews were conducted with nine persons living with HIV/AIDS and their nine direct informal caregivers. Interviews explored the themes of physical, emotional and social wellbeing. Two focus groups, one involving community leaders and one with local health care providers, were conducted to build on themes emerging from the in-depth interviews. A thematic analysis of the transcripts was performed.This study sheds light on the needs of persons living with HIV/AIDS and the needs of their direct informal caregivers in a rural area of the Eastern Cape province of South Africa. These needs include: physical/medical, social, material, financial, physiological/emotional, gender issues, and instrumental.In developing home-based care programmes, it is vital to consider the perceived needs of persons living with HIV/AIDS and their direct informal caregivers. The results from this study serve as a basis for the development of a home-based care programme in one resource-poor setting of South Africa and could provide a model for such programmes in similar areas. AIDS Epidemic Update, published by the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the World Health Organization (WHO), estimates that 33.2 million people were living with HIV in 2007  to make [things] but sometimes, the body becomes very painful. (PLHIV)Focus group participants also spoke about their personal experiences caring for family members infected with HIV/AIDS and the associated medical symptoms:But the problem is that when she eats, she has a loose stool and that makes her weak. She has no strength. She has lost weight and sometimes she even vomits. (community leader focus group participant)In addition to the deteriorating physical health that PLHIV experience, DICGs also reported stress-related physical symptoms, including headaches, lack of sleep, body pain and abnormal blood pressure. One DICG explained the burden put on her to continue providing care despite the toll on her personal health:I am tired all the time and my body is full of pains. Even if I am tired, I say that I must continue the work because there is nobody else who is taking care of them. (DICG)PLHIV and their DICGs expressed an obvious need for physical and medical assistance to cope with symptoms of HIV/AIDS, but interviewees could name few community resources available to assist them. Although participants named the local health centre as their primary source of medical assistance, participants also described a shortage of staff within the centre and an occasional shortage of medications. According to one participant in a community leader focus group, "The clinic is short of medicine. Sometimes you get help, sometimes you don't."In addition to sporadic support from the clinics, participants stated that PLHIV living in their communities were not receiving assistance at home from nurses or other trained health care workers.Many PLHIV reported sadness and worry as a result of their deteriorating health, the grave prognosis, and the fate of their children:Sometimes I feel sad...My health gives me some problems. I am always thinking of my status. (PLHIV)Now the days are [worse] than before. I always think of the disease...(PLHIV)However, while some respondents exhibited despair, others retained some hope:I am thinking of my life ahead in the future because I know it will not be the same as it used to be. I have good feelings about the future even if I don't know if I will be there. (PLHIV)PLHIV coped with the psychological burden that HIV/AIDS created by learning to accept their status, talking to family, or drawing support from religion and spirituality. As one interviewee stated, "Most of the time, I can't sleep. But after I open up, I feel much better." Another reported, "Happiness comes in terms of love. I am loved by family members."During the interviews, DICGs professed love and support for the PLHIV, and felt that their care was better than no care at all. As a DICG said, "I am doing everything because I have to do it. There is nowhere to run away from the responsibility. I have accepted it as it comes."However, caring for the PLHIV results in barriers to socializing and restricts support networks available to the DICG. This isolation results in a large emotional burden for the DICGs:Due to my emotions I am no longer socializing...Because I just sacrificed for the situation and taking care of my family, my husband and my children. Sometimes I am depressed but have to adjust myself so that I can go on helping them because I love them so much. (DICG)Other caregivers explained:I don't want to lose hope because I could leave her behind and die before she does. There is time. (DICG)There [are] times when I feel...I do not know where to start and where to end. At this point I turn to God to help us. (DICG)The psychological and emotional impact of HIV/AIDS on the PLHIV and his or her DICG can be substantial and must be addressed. No participants identified the clinic as a source of emotional support, and researchers were told that the clinic was short staffed.PLHIV and DICG identified religion as being very important. However, the religious organizations within the community did not appear to reach out to their impoverished congregations. Participants from the community leader focus group identified that churches are beginning to address the psychological and emotional needs of PLHIV. However, PLHIV who mentioned "church" as a source of support stated they received only spiritual support, and most had not disclosed their status to the priest or congregation.Stigma and isolation were important issues for PLHIV. Living in a small rural community, participants found it difficult to hide their HIV status, particularly as their disease progressed:People with HIV/AIDS are neglected. You are judged. They are insulting the person. They hate her. They don't want to come near her. (PLHIV)One PLHIV became very emotional and recalled:They are insulting me. They say I've got the sore mouth because I've got AIDS...The community needs to be taught how to handle the people with HIV, because they are always laughing at them and insulting them. When they are talking together and they see me and they are talking about me, this is why I don't tell anybody. (PLHIV)As a result of the stigma associated with HIV/AIDS in the community, support from friends was minimal; several of the PLHIV stated that they had no friends or that their friends were unsupportive. PLHIV and DICGs pointed to the association between HIV and sexual intimacy as the possible root of stigma. As one PLHIV said, "We are blamed and taken as prostitutes." Focus group participants also attributed the stigma attached to HIV/AIDS to its association with sex and sexuality:To our people, to our neighbours, it's a disgrace if your child is HIV positive, as if you are the cause of it. And sometimes you don't know from which direction it came...(community leader focus group)They say it's because girls don't behave. Girls have a lot of boys, boys have a lot of girlfriends. And it goes on like that. (community leader focus group participant)Others in the focus group commented on the cultural customs that restrict sexual behaviour to marital relationships, and that those engaging in sexual relations without being married are looked down upon. Furthermore, those who are married and diagnosed as HIV positive are perceived as immoral:Our culture does not allow for relations before marriage, so when you have AIDS, you feel that you have done something wrong, unacceptable behaviour. Even for a married couple, because it means that one has not been faithful to the partner. Focus group participants also discussed the implications of this stigma, including fear of disclosure, the isolation of PLHIV by the community, and silence around HIV/AIDS:When they hear that someone has HIV, [people] say, "I don't want to know this person. I don't want to go near this person." And they shut the doors of the community to this person. There is a lot of discrimination toward HIV-positive people. (community leader focus group participant)Fear of stigma and disclosure was heightened among participants who discussed problems of maintaining privacy in a small, isolated, rural setting. As the participant's HIV/AIDS symptoms progressed, hiding his or her HIV status from the community became increasingly difficult.In most cases, caregivers displayed complete devotion to the PLHIV. Though the fear of contracting HIV did cross their minds, it did not hamper their willingness to provide care:We have welcomed our brother because we love him. There's no other way...We decided just to accept him and love him the way we loved him before. Sometimes, there's a sadness and [we are] downhearted because it was not easy for us to accept that but, at last, we accepted...(DICG)Interview and focus group participants believed that community members' fear of infection promotes stigma. As one PLHIV said, "People don't care about us. They don't like us because they think they are going to be infected." Fear is perpetuated by a lack of education and information about HIV/AIDS in the community. Participants believed that further community education could succeed in removing the stigma attached to HIV/AIDS and increase community acceptance of those infected and affected by this illness:We must have people from the community come together and talk and discuss and share views on how to deal with this. We must have traditional healers, doctors, and others. We have to accept people and get rid of stigma. This starts at home. We have to accept family members with HIV/AIDS. (DICG)Participants attributed the extreme poverty affecting the community to the high level of unemployment, as well as other economic problems plaguing South Africa. "There's no work. Everybody has very little to live on...there's no money, and the rand is going up and down," a participant in the community leader focus group said. For those living in the area, poverty is exacerbated by drought, which is afflicting the village and rendering agricultural or farming activity nearly impossible. According to a community leader focus group participant, "Now there's a drought, we have nothing in our gardens."All PLHIV participating in this study were unemployed and living in extreme poverty. As one PLHIV stated, "The money is too little and the family is too big." In one case, 14 people were dependent on one pension and the sporadic income of one working adult. A PLHIV stated, "...it doesn't cover to support the children, even no[t] enough food to be covered." Another PLHIV remarked, "People are very poor. I would like to have some cattle and something to plant."A government grant of R620 was provided to PLHIV on a monthly basis. However, the processing time for granting a pension is sometimes unacceptably long and the amount of pension granted far too low to cover even basic expenses. In one case:My daughter who died - they took seven months to get a grant but she had died by the time the grant came. I asked her brother to dig into this issue because I am debt, no money to feed the children. And they gave me only R1000. Then I applied and got the R100 and R200 per child. I can't even pay her rent with this. (community leader focus group participant)According to participants, poverty leads to poor care and support of PLHIV as they are unable to access the treatment and nutrition necessary to maintain their health. On a broader scale, poverty affecting the area leads to a corrosion of the sense of community that once existed within the village. Community members do not have the means to lend support to neighbours who are ill. "It's very difficult to help someone when you have nothing," a community leader focus group participant said.Due to the financial drain and limited physical mobility created by HIV/AIDS, access to basic material needs  can be a significant challenge for PLHIV and their DICGs. This lack of access is particularly problematic in areas with high poverty rates:When we give them the education, we say, "You ought to eat a well-balanced diet." And they ask us: "Where are we going to get that well-balanced diet? With which money we can buy that food?" With poverty levels widespread throughout the community, participants were quick to point out deteriorating conditions. In addition to accessing food and medications, difficulties included affording costs associated with school, lack of child care, lack of affordable housing, and inaccessible transportation. Participants recognized that government assistance to the community in funding a CHBC system is necessary in order to provide medical support:There are no funds for home-based care. To buy the equipment, condoms, gloves, dressing, toiletries, sheets, some incentives for the volunteers. Training people can improve home-based care and donation of equipment, linen, cotton wools, toiletries, and sheets. Community responses to HIV/AIDS reveal gender imbalances within society. One community leader focus group participant noted that people in the community believe that HIV/AIDS is spreading because "girls don't behave". Double standards also exist in which women are expected to engage in sexual relations only within marriage, but custom allows men to have multiple partners. As one health care provider focus group participant stated, "[As for the men] now they don't take so many wives; but they still have girlfriends outside the marriage."Due to the physical limitations placed on the PLHIV by the illness, performing the tasks of day-to-day living can present a challenge. Informal caregivers provide assistance for the PLHIV in activities of daily life, including maintaining hygiene, eating and dressing. The level of care required by the PLHIV can be overwhelming:When it comes to the brother lying on the bed, sometimes, we need to be relieved. Someone can come and help us [do the washing]. We need to have enough funds so that we can take care of the brother, provide a good diet or drugs, take care of the children, someone can come to the house and help with the washing or bathing the brother. We are receiving no help from the community. (DICG)McDonnell, Brennan, Burnham and Tarantola 1994) state that in developing home-based care programmes, it is vital to consider the perceived needs of PLHIV and DICGs, and their families, even if they are difficult to meet [94 state Due to the debilitating nature of HIV/AIDS, the physical and medical needs of PLHIV are numerous and can be overwhelming . PLHIV cIn the current study, the formalized medical care available in the rural communities is under-resourced and under-staffed. PLHIV and their DICGs must therefore be provided with counselling, information and support on basic medical care and infection control. Home-based medical assistance and palliative care from trained health care workers in the community has the potential to increase quality of medical care for PLHIV, as well as decrease burden and consequent health issues for DIGGs ,13,16,22As many as 60% of HIV/AIDS patients suffer from major depression, often characterized by a loss of satisfaction, overwhelming sadness, feelings of guilt, and self-loathing . In the PLHIV commonly experienced isolation, lack of acceptance, and fear of disclosure. It is well documented in the literature that stigma and discrimination are widespread and can be significant barriers to access to adequate health care, as well as psychological and social support for PLHIV and their DICGs ,22,29,30Community awareness campaigns to reduce stigma are necessary in order to promote acceptance of those affected by HIV/AIDS in the community ,31,32. AA system of informal and formal counselling and support must be accessible to PLHIV and their DICGs through the community, as well as through clinic- and home-based services, in order to assist them in coping with the illness. Counselling must also be provided once the PLHIV has passed away in order to support the family through the process of bereavement -27.Poverty is a major contributing factor in the spread of HIV/AIDS ,37. SoutA system of home-based care, which is accessible free of charge, is imperative. Social welfare must be provided for PLHIV and their DICGs in order to lessen the financial toll of this illness. Furthermore, income-generating activities must be developed in order to allow PLHIV and their DICGs to produce income ,23.Social factors relating to poverty often increase the risk of HIV transmission and interfere with a person's ability to cope with the disease. The social position of women in many societies is linked to their increased susceptibility to HIV/AIDS. In resource-poor settings worldwide, women tend to suffer a greater burden from poverty since, as demonstrated in the current study, they do not have as much social freedom as men ,30,33,34In addition to being more susceptible to HIV/AIDS, women predominately assume the role of caregiver due to prevailing patriarchal attitudes and social structure. The stress of care giving is thus much greater on women than on men. Once the PLHIV has passed away, the female caregiver (who may herself be HIV positive) is then left with few means of support, having exhausted all resources in the care of the PLHIV.Finally, due to the low status of women, access to care and support for female PLHIV can be particularly difficult. The unique issues of women and HIV/AIDS must be addressed through a formal CHBC programme. It is important to develop strategies to reduce the complex and multifaceted burden of HIV/AIDS on women ,17,23-27Informal care must be supplemented with formal care in order to decrease the strain on the informal caregiver ,23-27. CThis descriptive study provides the foundation for the development of a model of CBHC that is sensitive to the expressed needs of PLHIV and their DICGs in the rural Eastern Cape, South Africa. To meet the needs identified by PLHIV in this study, the basic services offered by a home-based care programme in the Eastern Cape must include: in-home assistance to monitor health status; physical, emotional, and financial support; basic medical care and symptom control; medication, food and supplies delivery; and counselling and education regarding proper care. CBHC programmes must also provide training to volunteers and caregivers in basic health care and emotional counselling to support DICGs and alleviate their burden of care.In interpreting these findings, study limitations should be noted. The nine PLHIV who participated in this study were primarily unmarried women. None of the participants were using antiretroviral therapy. Caution should be used, therefore, in applying the results of this study to male PLHIV, or to PLHIV who are using antiretroviral therapy.It is also important to note that, due to the established criteria for selection of the interviewees, only PLHIV who had disclosed their status to at least one family member who was willing to care for them were eligible for participation. Therefore, the current findings do not reflect the issues facing those PLHIV who have not disclosed their status to their families, or whose families have rejected them as a result of their status.The members of the research team relied exclusively on the interpreters to identify the PLHIV and their caregivers. The small number of participants and the use of convenience sampling reflected the small numbers of PLHIV who have disclosed their status. The small number of male participants reflected the fact that few numbers of men in the community have disclosed their HIV-positive status. Additionally, a number of men who were approached stated that they were not comfortable participating in the project.In-depth data regarding the needs of PLHIV and their DICGs living in a rural African community were collected. These needs were explored with the purpose of informing the development of strategies that will enable those affected to cope with the disease. Data from this study, combined with relevant literature, has identified the needs of PLHIV and their DICGs. This information can serve as the basis for the development of a CBHC programme.The community needs assistance to build its capacity to provide comprehensive support for PLHIV and their caregivers. Assistance must come from a variety of sectors, including government, non-governmental organizations and businesses. The development of supplementary health care programmes and increased levels of support for PLHIV and their caregivers will empower thousands of people to cope with HIV/AIDS and its complex psychological and social challenges.The authors declare that they have no competing interests.BM and NM contributed equally to the conception, design and implementation of the study. Both authors read and approved this manuscript.


Concomitant pulmonary and hepatic toxicity secondary to nitrofurantoin is a rare but serious complication of the use of Nitrofurantoin.A 72 year old woman taking Nitrofurantoin for recurrent urinary sepsis presenting with breathlessness abdominal discomfort and abnormal liver function tests is described. Drug toxicity secondary to Nitrofurantoin was diagnosed. Cessation of the drug and a course of steroids markedly improved her condition.We review the drug reactions associated with Nitrofurantoin and suggest an alternative treatment strategy for recurrent urinary sepsis.Adverse drug reactions are an important cause of concomitant lung and liver toxicity and the mainstay of treatment is drug withdrawal. Nitrofurantoin is well recognized as a cause of adverse drug reactions although the combination of lung and liver toxicity is rare . A case A 72 year old retired woman presented to her General Practitioner with breathlessness, upper abdominal discomfort and nausea. She was treated initially for a lower respiratory tract infection with a five day course of amoxicillin and prednisone. Blood analysis at this time revealed abnormal liver function tests (LFTs) [see additional file A review of her history in the months prior to this acute deterioration revealed increasing breathlessness, not relieved by her usual medication, forcing her to give up her favourite walking routes. Past medical history included stable asthma managed by her general practitioner, recurrent urinary tract infection and osteoporosis. She had no drug allergies and her prescribed medications were: zopiclone 7.5 mg od; medroxyprogesterone acetate 5 mg od; conjugated oestrogens 0.3 mg od; amitriptyline 10 mg od; nitrofurantoin 100 mg tds; fluticasone 250 μg inhaled od; naproxen 550 mg bd; hyoscine butylbromide 10 mg as required; paracetamol 1 gm as required up; and salbutamol 200 μg inhaled as required. The dose of nitrofurantoin had been increased 5 months prior to admission from 100 mg od, she had been taking it for 6 months prior to this dose increase. She had no risk factors for development of liver pathology, did not smoke and rarely drank alcohol.On examination there were no signs of liver disease. Her abdomen was soft with mild right upper quadrant tenderness. Respiratory examination was unremarkable with no audible wheeze or crepitations, oxygen saturations were 97% at rest. The remaining examination did not reveal any further signs and of note there was nothing to suggest an underlying autoimmune disease.A full blood count revealed a haemoglobin of 159 g/L  with no other abnormalities. Repeat LFTs had deteriorated [see additional file A high index of suspicion of an adverse drug reaction at this point lead to cessation of nitrofurantoin. In addition she was commenced on a course of oral corticosteroids; Prednisone 40 mg od as an adjunct to cessation of the nitrofurantoin.A full screen for liver disease delivered the following abnormal results; IgG was elevated at 15.0 g/L . Anti-nuclear antibody was positive  at a titre of 1/80. Anti-smooth muscle antibody was positive at a titre of 1/40. Epstein Barr virus and Cytomegalovirus serology were both consistent with past infection.Pulmonary function tests demonstrated impaired diffusion capacity of 0.70 mmol/min/kPa/L (49% predicted) FEV1 2.64, FVC 3.30, FEV1/FVC 79.92%. High resolution computer tomogram of the chest revealed peripheral alveolar shadowing and fibrotic changes [see Fig. After withdrawal of nitrofurantoin and commencement of oral corticosteroids this woman made a good symptomatic recovery. At follow up LFTs had normalized [see additional file Two years following her initial presentation and cessation of nitrofurantoin she has had no recurrence of her symptoms.Nitrofurantoin is used for the prophylaxis and treatment of uncomplicated urinary tract infection. Adverse drug reactions (ADR) to nitrofurantoin include pulmonary reactions, hepatic toxicity, blood dyscrasias and peripheral neuropathy . ConcomiWe reviewed the possibility that her other medications may have contributed to her combined pulmonary and hepatic pathology. Of her prescribed medications, in addition to nitrofurantoin, only medroxyprogesterone had been reported as causing pulmonary fibrosis and this only in combination with radiotherapy . Drugs cThe vast majority of pulmonary reactions to nitrofurantoin (90%) are acute and characterised by fever, cough, dyspnoea, and peripheral eosinophilia . RadioloInitial treatment consists of drug withdrawal. In addition, we elected to use oral corticosteroids, which previous cases have also tried, despite no definite evidence to support their use in addition to withdrawal of nitrofurantoin . InteresThe use of nitrofurantoin for UTI prophylaxis in this woman is clearly no longer appropriate. She vehemently agreed with this and self initiated regular intake of dried cranberries. There is some evidence to support her approach . In postAn alternative to her previous prophylactic regime is self-initiated intermittent treatment of UTIs with short course antibiotics . In lighAdverse drug reactions should be considered in patients presenting with concomitant lung and liver toxicity with the mainstay of treatment being drug withdrawal.The author(s) declare that they have no competing interests.AP and AH both contributed equally to the preparation, reading and approval of the manuscript.Serial liver function tests, before, at and after admission to hospital. This file shows a graphical representation of liver function tests throughout this patients' management.Click here for file