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AIDS Care: Psychological and Sociomedical Aspects of AIDS/HIV Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/caic20
Implications for the San Francisco model of care J. W. Dilley
a
a
Associate Clinical Professor of Psychiatry , UCSF, and Director, UCSF AIDS Health Project , USA Published online: 25 Sep 2007.
To cite this article: J. W. Dilley (1990) Implications for the San Francisco model of care, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 2:4, 349-352, DOI: 10.1080/09540129008257751 To link to this article: http://dx.doi.org/10.1080/09540129008257751
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
AIDS CARE, VOL. 2, NO.4,1990
349
Implications for the San Francisco model of care
Downloaded by [Monash University Library] at 19:38 02 February 2015
J. W.DILLEY Associate Clinical Professor of Psychiany, UCSF, and Director, UCSF AIDS Health Roject, USA
Introduction The Sixth International Conference on AIDS, ‘AIDS in the Nineties: From Science to Policy’ was held in San Francisco during the week of June 20-24, 1990, with over 10,000 researchers, clinicians, activists and people with HIV disease, joining 1,200 journalists gathered from around the world to hear the latest word on AIDS research. Attendees heard ‘State of the Art’ reviews and discussions of new research in each of the four tracks of the conference: Basic Science, Clinical Care, Education and Prevention and Policy and Social Development. In all, approximately 5,000 papers were presented. The editors of AIDS Care have asked me to take on the daunting task of commenting on the implications of the most relevant information presented at the conference for the San Francisco model of care.
T h e San Francisco model of cam The San Francisco model of care involves the Department of Public Health as the funnel through which most of the city’s AIDS prevention and service dollars are channeled, and a range of strong and loosely co-ordinated community based groups, charged with the development and implementation of needed services. This model of care cannot be understood without reviewing
the history and development of these services. When AIDS first became a reality in San Francisco in 1982, it did so in a community that was well-organized, well-respected, and politically iduential: the gay community. At that time, gay community leaders frequently held positions of authority at all levels of public and private endeavour, and the community was accustomed to lobbying for and receiving city services specifically targeted to gays and lesbians. With the advent of AIDS, an existing advocacy group was present to analyze, define, lobby for, and eventually provide services to the gay community. AIDS education efforts, social services and advocacy for accessible and sensitive medical care grew out of the personal experience of AIDS. Involvement of those from the affected communities has continued to be an important organizing principle in San Francisco. Adhering to the principle that “It is easier to teach AIDS information to those who are street wise than to teach street wisdom to AIDS experts”, this acknowledgement of the cultural implications of AIDS has been an important aspect of the success of AIDS service delivery in San Francisco. Thus, gay men and lesbians provide much of the care to gay men, ex-intravenous drug users and other recovering individuals provide much
Downloaded by [Monash University Library] at 19:38 02 February 2015
350
SAN FRANCISCO SUMMARIES: J.
W.DILLEY
of the AIDS education to the substance abuse community, people of colour agencies provide service in communities of colour, and retired sex industry workers can be found once again ‘worlung the streets’, but this time to bring AIDS information and education to prostitutes. A second organizing principle that characterizes the San Francisco model grew out of the first: as much as possible, services are provided out of the hospital setting. Because of the early and remarkable mobilization of the gay community in particular, thousands upon thousands of hours of volunteer care have been provided to people with HIV disease. These services have allowed affected individuals to remain at home for much longer periods of time than would have been possible without the trained community volunteers who provide practical and emotional support services. Cooking, cleaning, shopping, paying bills, and walking the dog are just some of the many hfferent daily tasks provided by volunteers. Emotional support has also been offered through a ‘buddy system’ that has reduced the isolation and subsequent depression that without question means, for some, the difference between hospitalization and the ability to be managed on an outpatient basis. In addition, subsidized housing provides group living anangements, helps to centrahze care, and allows affected individuals the chance to share resources. This system of care allows relatively easy access to practical support services, and keeps people out of the hospital as long as possible.
Significant developments Information presented at the conference with particular importance to the San Francisco model of care fell into two main categories: AIDS Education and Prevention and Health Care Services.
AIDS education and prwention Data presented at the conference about AIDS education and prevention supports the
concept of targeting particular communities. Data presented by the San Francisco Department of Public Health documented the sobering fact that of a group of self-identified gay and bisexual men, ages 20-24 years, tested for the presence of HIV antibody at the city venereal disease clinic, 40.7% were seropositive. The total number in the study (N=59)was small, and while an argument can be made that this is a biased sample because those who receive medical care at the city venereal disease clinic are at particularly high risk for HIV infection, this finding is striking nonetheless. Many of these men were undoubtedly infected while still teenagers and the need for San Francisco to devote additional funding to progammes addressing the issue of AIDS prevention among teens and late adolescents is clear. Similarly, an evaluation of San Francisco’s underground needle exchange programme, ‘Prevention Point’, found that major behavioural change occurred after the programmes’ inception. Research showed a decline in needle sharing and an increase in safer sex practices among the participants in the programme. Further, despite the oft heard fear that a needle exchange programme would promote the use of drugs, no evidence of increased drug usage was found in the study participants. Finally, the seroprevalance rates among San Francisco’s IV drug using community has not shown the kind of rapid rise seen in other cities. The effect of this programme in helping keep the rate of infection among injection drug users low is unclear. However, not advocating for the expansion of successful programmes such as this is counter productive and an example of not allowing data to be used rationally in the development of succssful programmes. This data will be used to continue the political dialogue needed to reassure those who oppose this approach and hopefully, the San Francisco model will adjust to emphasize this type of approach more clearly. Another study with relevance for the San Francisco model of care detailed the re-
Downloaded by [Monash University Library] at 19:38 02 February 2015
IMPLICATIONS FOR THE S A N FRANCISCO MODEL OF CARE
emergence of high risk s e d behaviour among a sigmlicant subset of gay and bisexual men in the city. While San Francisco has demonstrated a remarkable reduction in high-risk sexual behaviour from the early days of the epidemic in which a drop was recorded from 4096 of gay and bisexual men engaging in high-risk behaviour in 1984 to 7% in 1988, recent data from the AIDS Behavioural Research Project documented a 19% relapse from low-risk behaviours to high-risk behaviours. This finding, which is consistent with reports from around the world that many high-risk and HIV infected individuals are not complying with risk-reduction guidelines, means that San Francisco must continue to put money and ongoing effort into providing support for the maintenance of safer sex behaviour. To do otherwise is to jeopardize the sigmficant investment of effort and money that has been spent on helping high-risk individuals adopt necessary behaviour change.
Health care seraices While advances in the medical treatment of those with HIV disease is a welcome development, the lack of additional funding to offset the increased cost of care may mean less money to support other elements of care. Early medical intervention and advances in the treatment of people with AIDS were strongly advocated at the conference. Data from the San Francisco Department of Public Health revealed that survival for patients diagnosed in 1987 and 1989 was greatly improved over those dagnosed earlier. The use of zidovudine (ZDV, or AZT) was clearly shown to improve survival rates and the combined use of ZDV and prophylactic pentmadine demonstrated an even greater effect in prolonging survival. Consequently, the numbers of diagnosed AIDS cases in San Francisco has not kept pace with projections from a few years ago. Instead, the numbers of people living with HIV disease has increased and the subse-
35 1
quent demand for ongoing medical care and follow-up has simultaneously risen. At the same time that people with AIDS are living longer, the number of identified HIV infected people is also rising. The numbers are increasing largely because of better case finding, that is, more people are being tested and greater numbers of infected people are being identified. A clear consensus emerged from the conference that early identification of seropositive persons is important because of the demonstrated effectiveness of early treatment. In fact, Margaret Fischl, MD,the co-ordinator of the zidovudine trials at the University of Miami, argued essentially that “the earlier treatment begins, the better”. Believing that early intervention is most effective during the early stage of infection when viral burden is low and the immune system is s till relatively intact, she pointed to existing research that has shown that placebotreated patients who were switched to ZDV are doing less well over time than patients who started and remained on therapy. San Francisco is looking now at new programmes and approaches to reflect this change. The fact that patients are living longer and treatment is beginning earlier has already begun to have a significant impact on the San Francisco model of care. In a city with an estimated 25,000 to 30,000 infected individuals and approximately 2300 living people with AIDS, the increased demand for services at all levels of care has placed additional burdens on the system and has required an increased allocation of resources to the payment for drugs and the provision of basic medical services and, the subsequent increased demand for social, psychological and in-home practical support services has outstripped the capacity of the system to respond. There are no longer sufficient volunteers to provide these needed services. Millions of additional dollars must be made available to to keep pace with these developments in treatment and the expanded numbers of affected individuals.
352
S A N FRANCISCO SUMMARIES. J.
of the health care delivery dollar dictates that all cost saving measures must be consiThe San Francisco model of care has relied dered. Duplication of services cannot be alon community involvement, and the utiliza- lowed and spending money to support duplition of in-home services over hospital based cative administrative structures can also not care to ensure sensitive and culturally ap- be accepted. propriate care to people with AIDS and to To keep pace, the system must become hold down the cost of care. With recent leaner and more efficient. While continuing advances in treatment, however, the system to lobby for increased funding to meet the is in danger of being overrun. The volunteer challenges of AIDS prevention and care, we base which has for so long been the back- must also look closely at existing services to bone of much of the needed ancillary ser- ensure the best utilization of main funds. T o vices in the care of people with AIDS is no allow poor utilization of the relatively few longer large enough to keep pace with de- dollars available is untenable. Finally, while mand. The need for additional service and San Francisco is facing these shifting realiprevention dollars is clear. In addition, the ties and attempting to restructure service reliance on community involvement may delivery to meet the new demands of earlier have begun to work too well, stretching the and more aggressive treatment, these issues AIDS dollar even further. The burgeoning are much more broadly relevant than to one group of AIDS care agencies that proiifercity in California. AIDS prevention and care ated during the early years of the epidemic, is a worldwide concern and the tasks coneach organized to serve one specific sector of fronting San Francisco are essentially not so those at risk for AIDS, needs to rethink their different from those confronting the rest of priorities and consider joining with other the world. existing programmes. The relative scarcity
Conclusion
Downloaded by [Monash University Library] at 19:38 02 February 2015
W.DILLEY
AIDS Care: Psychological and Sociomedical Aspects of AIDS/HIV Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/caic20
Implications for the San Francisco model of care J. W. Dilley
a
a
Associate Clinical Professor of Psychiatry , UCSF, and Director, UCSF AIDS Health Project , USA Published online: 25 Sep 2007.
To cite this article: J. W. Dilley (1990) Implications for the San Francisco model of care, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 2:4, 349-352, DOI: 10.1080/09540129008257751 To link to this article: http://dx.doi.org/10.1080/09540129008257751
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
AIDS CARE, VOL. 2, NO.4,1990
349
Implications for the San Francisco model of care
Downloaded by [Monash University Library] at 19:38 02 February 2015
J. W.DILLEY Associate Clinical Professor of Psychiany, UCSF, and Director, UCSF AIDS Health Roject, USA
Introduction The Sixth International Conference on AIDS, ‘AIDS in the Nineties: From Science to Policy’ was held in San Francisco during the week of June 20-24, 1990, with over 10,000 researchers, clinicians, activists and people with HIV disease, joining 1,200 journalists gathered from around the world to hear the latest word on AIDS research. Attendees heard ‘State of the Art’ reviews and discussions of new research in each of the four tracks of the conference: Basic Science, Clinical Care, Education and Prevention and Policy and Social Development. In all, approximately 5,000 papers were presented. The editors of AIDS Care have asked me to take on the daunting task of commenting on the implications of the most relevant information presented at the conference for the San Francisco model of care.
T h e San Francisco model of cam The San Francisco model of care involves the Department of Public Health as the funnel through which most of the city’s AIDS prevention and service dollars are channeled, and a range of strong and loosely co-ordinated community based groups, charged with the development and implementation of needed services. This model of care cannot be understood without reviewing
the history and development of these services. When AIDS first became a reality in San Francisco in 1982, it did so in a community that was well-organized, well-respected, and politically iduential: the gay community. At that time, gay community leaders frequently held positions of authority at all levels of public and private endeavour, and the community was accustomed to lobbying for and receiving city services specifically targeted to gays and lesbians. With the advent of AIDS, an existing advocacy group was present to analyze, define, lobby for, and eventually provide services to the gay community. AIDS education efforts, social services and advocacy for accessible and sensitive medical care grew out of the personal experience of AIDS. Involvement of those from the affected communities has continued to be an important organizing principle in San Francisco. Adhering to the principle that “It is easier to teach AIDS information to those who are street wise than to teach street wisdom to AIDS experts”, this acknowledgement of the cultural implications of AIDS has been an important aspect of the success of AIDS service delivery in San Francisco. Thus, gay men and lesbians provide much of the care to gay men, ex-intravenous drug users and other recovering individuals provide much
Downloaded by [Monash University Library] at 19:38 02 February 2015
350
SAN FRANCISCO SUMMARIES: J.
W.DILLEY
of the AIDS education to the substance abuse community, people of colour agencies provide service in communities of colour, and retired sex industry workers can be found once again ‘worlung the streets’, but this time to bring AIDS information and education to prostitutes. A second organizing principle that characterizes the San Francisco model grew out of the first: as much as possible, services are provided out of the hospital setting. Because of the early and remarkable mobilization of the gay community in particular, thousands upon thousands of hours of volunteer care have been provided to people with HIV disease. These services have allowed affected individuals to remain at home for much longer periods of time than would have been possible without the trained community volunteers who provide practical and emotional support services. Cooking, cleaning, shopping, paying bills, and walking the dog are just some of the many hfferent daily tasks provided by volunteers. Emotional support has also been offered through a ‘buddy system’ that has reduced the isolation and subsequent depression that without question means, for some, the difference between hospitalization and the ability to be managed on an outpatient basis. In addition, subsidized housing provides group living anangements, helps to centrahze care, and allows affected individuals the chance to share resources. This system of care allows relatively easy access to practical support services, and keeps people out of the hospital as long as possible.
Significant developments Information presented at the conference with particular importance to the San Francisco model of care fell into two main categories: AIDS Education and Prevention and Health Care Services.
AIDS education and prwention Data presented at the conference about AIDS education and prevention supports the
concept of targeting particular communities. Data presented by the San Francisco Department of Public Health documented the sobering fact that of a group of self-identified gay and bisexual men, ages 20-24 years, tested for the presence of HIV antibody at the city venereal disease clinic, 40.7% were seropositive. The total number in the study (N=59)was small, and while an argument can be made that this is a biased sample because those who receive medical care at the city venereal disease clinic are at particularly high risk for HIV infection, this finding is striking nonetheless. Many of these men were undoubtedly infected while still teenagers and the need for San Francisco to devote additional funding to progammes addressing the issue of AIDS prevention among teens and late adolescents is clear. Similarly, an evaluation of San Francisco’s underground needle exchange programme, ‘Prevention Point’, found that major behavioural change occurred after the programmes’ inception. Research showed a decline in needle sharing and an increase in safer sex practices among the participants in the programme. Further, despite the oft heard fear that a needle exchange programme would promote the use of drugs, no evidence of increased drug usage was found in the study participants. Finally, the seroprevalance rates among San Francisco’s IV drug using community has not shown the kind of rapid rise seen in other cities. The effect of this programme in helping keep the rate of infection among injection drug users low is unclear. However, not advocating for the expansion of successful programmes such as this is counter productive and an example of not allowing data to be used rationally in the development of succssful programmes. This data will be used to continue the political dialogue needed to reassure those who oppose this approach and hopefully, the San Francisco model will adjust to emphasize this type of approach more clearly. Another study with relevance for the San Francisco model of care detailed the re-
Downloaded by [Monash University Library] at 19:38 02 February 2015
IMPLICATIONS FOR THE S A N FRANCISCO MODEL OF CARE
emergence of high risk s e d behaviour among a sigmlicant subset of gay and bisexual men in the city. While San Francisco has demonstrated a remarkable reduction in high-risk sexual behaviour from the early days of the epidemic in which a drop was recorded from 4096 of gay and bisexual men engaging in high-risk behaviour in 1984 to 7% in 1988, recent data from the AIDS Behavioural Research Project documented a 19% relapse from low-risk behaviours to high-risk behaviours. This finding, which is consistent with reports from around the world that many high-risk and HIV infected individuals are not complying with risk-reduction guidelines, means that San Francisco must continue to put money and ongoing effort into providing support for the maintenance of safer sex behaviour. To do otherwise is to jeopardize the sigmficant investment of effort and money that has been spent on helping high-risk individuals adopt necessary behaviour change.
Health care seraices While advances in the medical treatment of those with HIV disease is a welcome development, the lack of additional funding to offset the increased cost of care may mean less money to support other elements of care. Early medical intervention and advances in the treatment of people with AIDS were strongly advocated at the conference. Data from the San Francisco Department of Public Health revealed that survival for patients diagnosed in 1987 and 1989 was greatly improved over those dagnosed earlier. The use of zidovudine (ZDV, or AZT) was clearly shown to improve survival rates and the combined use of ZDV and prophylactic pentmadine demonstrated an even greater effect in prolonging survival. Consequently, the numbers of diagnosed AIDS cases in San Francisco has not kept pace with projections from a few years ago. Instead, the numbers of people living with HIV disease has increased and the subse-
35 1
quent demand for ongoing medical care and follow-up has simultaneously risen. At the same time that people with AIDS are living longer, the number of identified HIV infected people is also rising. The numbers are increasing largely because of better case finding, that is, more people are being tested and greater numbers of infected people are being identified. A clear consensus emerged from the conference that early identification of seropositive persons is important because of the demonstrated effectiveness of early treatment. In fact, Margaret Fischl, MD,the co-ordinator of the zidovudine trials at the University of Miami, argued essentially that “the earlier treatment begins, the better”. Believing that early intervention is most effective during the early stage of infection when viral burden is low and the immune system is s till relatively intact, she pointed to existing research that has shown that placebotreated patients who were switched to ZDV are doing less well over time than patients who started and remained on therapy. San Francisco is looking now at new programmes and approaches to reflect this change. The fact that patients are living longer and treatment is beginning earlier has already begun to have a significant impact on the San Francisco model of care. In a city with an estimated 25,000 to 30,000 infected individuals and approximately 2300 living people with AIDS, the increased demand for services at all levels of care has placed additional burdens on the system and has required an increased allocation of resources to the payment for drugs and the provision of basic medical services and, the subsequent increased demand for social, psychological and in-home practical support services has outstripped the capacity of the system to respond. There are no longer sufficient volunteers to provide these needed services. Millions of additional dollars must be made available to to keep pace with these developments in treatment and the expanded numbers of affected individuals.
352
S A N FRANCISCO SUMMARIES. J.
of the health care delivery dollar dictates that all cost saving measures must be consiThe San Francisco model of care has relied dered. Duplication of services cannot be alon community involvement, and the utiliza- lowed and spending money to support duplition of in-home services over hospital based cative administrative structures can also not care to ensure sensitive and culturally ap- be accepted. propriate care to people with AIDS and to To keep pace, the system must become hold down the cost of care. With recent leaner and more efficient. While continuing advances in treatment, however, the system to lobby for increased funding to meet the is in danger of being overrun. The volunteer challenges of AIDS prevention and care, we base which has for so long been the back- must also look closely at existing services to bone of much of the needed ancillary ser- ensure the best utilization of main funds. T o vices in the care of people with AIDS is no allow poor utilization of the relatively few longer large enough to keep pace with de- dollars available is untenable. Finally, while mand. The need for additional service and San Francisco is facing these shifting realiprevention dollars is clear. In addition, the ties and attempting to restructure service reliance on community involvement may delivery to meet the new demands of earlier have begun to work too well, stretching the and more aggressive treatment, these issues AIDS dollar even further. The burgeoning are much more broadly relevant than to one group of AIDS care agencies that proiifercity in California. AIDS prevention and care ated during the early years of the epidemic, is a worldwide concern and the tasks coneach organized to serve one specific sector of fronting San Francisco are essentially not so those at risk for AIDS, needs to rethink their different from those confronting the rest of priorities and consider joining with other the world. existing programmes. The relative scarcity
Conclusion
Downloaded by [Monash University Library] at 19:38 02 February 2015
W.DILLEY
