A Profile of HIV/AIDS Among Latinos and Latinas In Los Angeles County

Ruben Gamundi, Jessie Gruttadauria, Juan Ledesma, Cesar Portillo, Ana Rodriguez & George Vargas

Research Committee of Alianza Latino Caucus of the Los Angeles County HIV Health Services Planning Council

Authors

The research committee of Alianza Latino Caucus includes:

Ruben Gamundi, Treatment Advocate, AIDS Project Los Angeles. Presentation on HIV/AIDS-affected Latinos
Jessie Gruttadauria, Case Manager, AIDS Healthcare Foundation Clinics - Hollywood
Juan Ledesma, Director of Health Services, Los Angeles Gay & Lesbian Community Services Center. Presentation on Research Questions
Veronica Matos, Associate Director of Health Services, Los Angeles Gay & Lesbian Community Services Center
Cesar Portillo, Director of Government Affairs & Communication, AIDS Healthcare Foundation. Presentation on L.A. Latino Community
Ana Rodriguez Health Educator, AIDS Service Center. Presentation on Sub-groups
George Vargas, Case Manager, AIDS Service Center

About Alianza

Alianza is the Latino Caucus of the Los Angeles HIV Health Services Planning Council, the local Ryan \Nhite CARE Act community planning group. As an official advisory group, Alianza includes case managers, treatment advocates, health educators, public policy advocates, and others from local agencies who are dedicated to bringing greater attention, additional resources and effective action to the battle against HIV/AIDS in L.A. County's Latino community.

Late last year, Alianza sponsored the 1993 Intergovernmental Hearing on HIV/AIDS in the Latino Community, which was chaired by State Senator Art Torres. A policy paper is in the draft stages, and is generated from the hearing testimony of local HIV service providers and Latinas and Latinos living with HIV/AIDS. The group helped author the Latino section of the Los Angeles County HIV Strategic Plan. An educational conference is planned for November to empower Latinas and Latinos living with HIV - as well as their families - with information, education and support.

About This Paper

Alianza has compiled this information for the April 23 & 24,1994 National Latino HIV/AIDS Research Conference, "Defining the Path for Future Research," sponsored by the UCLA Center for the Study of Latino Health of the UCLA School of Medicine.

This is not a scientific document, but community input. As service providers, we have surveyed existing information but have focused primarily upon our own experience in the field to generate questions for the conference's epidemiological and behavioral research agenda.

We have organized this paper in an inverse pyramid: We begin with general information on L.A.'s Latinos that would be of interest for researchers studying Latinos and HIV. We narrow the focus to Latinos with HIV in general, and then specific sub-populations.

Within each section, we highlight our questions in italics, and trust you as researchers will determine where within your scope of work they would fit. We hope we have produced questions that will spark research that is truly useful to us in creating prevention and education messages, as well as in promoting our services and tailoring them to meet the overwhelming need we see in Los Angeles, California and throughout the Americas.

We also hope that this effort will begin to create a bridge of communication so that our efforts will be of mutual benefit.

A Snapshot of The Greater Los Angeles County Latina/Latino Community

According to the Task Force for Health Care Access in Los Angeles County:

According to the L.A. County Adolescent HIV/AIDS Strategic Plan of 1993: Latinos are found in heavy concentration throughout the county. According to marketing research conducted by the Los Angeles Times, Latinos make up over 60% of the population in the following areas: In the following areas, Latinos comprise the vast majority, or over 80% of the population: According to the county's Health Task Force: The task force also reports that in terms of health, The task force also notes that in 1992, the largest ethnic group of medically uninsured is Latino: This number is even more alarming when Latino teen pregnancy is considered.

A Snapshot of Latinos and Latinas Living With HIV/AIDS in Los Angeles County

For the 1993 Intergovernmental Hearing on HIV/AIDS in the Latino Community, AIDS Epidemiology of Los Angeles County prepared the attached documentation which notes the following:

In addition, documentation by the State Department of Health Services indicates

Suggested Research Questions

1. How many Latinos can be reliably estimated to be infected with H/V in Los Angeles County, and how many more can we expect to become infected? What epidemiological models will allow for more accurate projections about seroprevalence in the Latino community?

2. As the following section on the undocumented indicates, anecdotal evidence suggests that Latinos learn of their H/V infection and/or AIDS diagnosis only after presenting in an acute care facility with an opportunistic infection. We feel this reflects a general misconception within the Latino community still that we are not at risk for infection. Our experience does not agree with L.A. County's HI V Epidemiology's assertion that new infections peaked years ago and that we should soon start to see a decline in AIDS cases. Cur experience instead suggests that Latinos - especially the undocumented - are systematically overlooked and undercounted, and that in all likelihood the recent explosion of cases in our community suggests infection is out of control in the local Latino community and has not peaked.

3. Therefore, we would like to see a local epidemiological study that would focus exclusively on L.A. County Latinos, one that would give us a reliable estimate of how many are infected with the virus, where in our community infection has been most prevalent in terms of gender, region of residence, residency status, acculturation within U. S. and gay lifestyles, predominant language and literacy levels of the infected. Also, risk behaviors, country of origin, and migration patterns would be useful (Some data may be available through the IMACS casemanagement computer system used by APLA and ASC, among others, but datais sporadic).

4. Is life expectancy shorter for Latinos with AIDS as compared to non-Latinos? Again, anecdotal evidence suggests Latinos present at later stages of infection.Can it be demonstrated that when we present at the same stages of in fec tion, Latinos live as long as non-Latinos? We know that Latinos present later, but how much later? This information is critical to generating momentum at funding discussions on increased promotion of services, planning of hea/thcare delivery, and clinical trials for our community.

5. Can it be demonstrated that the cultural emphasis on family can help extend lifespans of HIV-infected Latinos when H/V status and sexuality are overcome as negative factors? Such information could be useful in educating the Latino community as to the importance of overcoming AIDS phobia.

6. Can it be demonstrated that HI V prevention education for parents - perhaps through the school system - is more effective in promoting safer sex among youth than educating youth alone? Our local hearing seemed to demonstrate strong support for educating Latino youth by first educating Latino parents.

7. Can it be demonstrated that funding decisions by the local Ryan White CARE Act planning council have begun to increase access by Latinos of available health care services?

Groups Within The Larger Group

The Undocumented

Perhaps the most alarming area of concern remains HIV infection among the undocumented because the lack of documented evidence of what service providers see in increasing numbers.

Within Alianza's own group, our most recent experience suggests that up to 50% of APLA's Latino clientele is undocumented. APLA is located in the heart of Hollywood, but serves clients from throughout the county.

While it is estimated that a much smaller percentage - perhaps 10 percent - of Pasadena's AIDS Service Center's Latino clients are undocumented, nurse practitioner Rose Vazquez of the AIDS Healthcare Foundation Clinic in Downtown L.A. estimates that at least 70 percent of her case load is undocumented.

Often, the undocumented avoid government-run facilities like county hospitals. Vazquez notes that as a consequence, it is not unusual to see clients with as few as four T-cells on their initial visit. Elliot Johnson, director of County's 5P21 AIDS Clinic, confirmed this trend during his testimony delivered at Alianza's Intergovernmental Hearing. Mr. Johnson noted that "If you are Caucasian and gay and live on the Westside, often times you will test early. If you test positive, you will get thyself into a treatment modality early. If you are Hispanic and/or black, you do not test early. You wait until you present with a symptom that brings us into the hospital, and at that point you find that you have full-blown AIDS."

Of course, the most devastating aspect of being undocumented is the limitation placed on benefits available to often very ill persons. Tragically, the trend toward limiting access to social and medical services by the undocumented promises to exacerbate an already intolerable situation.

As Avance Human Services' Interim Executive Director Alva Moreno noted at the recent Loyola Marymount University Conference on Immigrants and HIV/AIDS, the difficulty for CBOs in serving the needs of the undocumented is that their needs are so great, service providers must often go beyond the scope of their contracted services to a humane response to crisis situations. Children must be attended to in, crisis intervention is required in cases of domestic violence caused by emergency housing arrangements must be made, etc.

Providers also face added personal stress when serving the undocumented with HIV. As Ms. Moreno notes, about half of the undocumented couples she has known over the years through service to the HIV infected have died. Often, children are adversely affected when the mother becomes too ill to care for them.

Fortunately, in looking at the undocumented, new information is being generated by the work of Clinica Para Las Americas, which has been focusing on the impact of HlV in the heavily undocumented community of Pico Union/Westlake, which is just west of Downtown Los Angeles. As Clinica's HIV Services Director Loren Lewis reported at the same "Immigrants and HIV/AIDS Conference" at Loyola Marymount University, Clinica Para Las Americas has served the healthcare needs of that community since 1989. Although the clinic does not as of yet provide direct medical care for HIV, Clinica provides HlV education, mental health services, HIV testing and has been recently awarded promotion of services funding.

According to Lewis, Pico Union is a dense community, with three or four families often sharing one apartment and 124 residents per square acre, as compared to the county average of 14 per square acre. It is a magnet for immigrants, with the majority hailing from Central America. Not surprisingly, 90% percent of the clinic's staff and clients are immigrants. As Lewis notes, each nationality presents linguistic and cultural differences, as well as "hermetically sealed" communities which speak indigenous languages as opposed to Spanish. Although most residents are working people and their families, Pico Union/Westlake also has the highest crime rate in all of Los Angeles, a thriving illegal substance industry, and much homelessness. Clinica often deals with the symptoms of stress disorders associated with such conditions, including much domestic violence and sexual abuse.

Clinica has provided Spanish language "HIV 101" for over 3 years. Lewis reports greater success in conducting such 101 when individuals are grouped by gender. He reports that women tend to be quite shy and reserved when put in 101 classes with men, but will open up and communicate with frankness about sexuality when in an all-female environment.

Using a survey conducted by Clinica on its clients and through in-house data, Lewis reports the following:

Suggested Research Questions

8. What is the extent of the correlation between domestic violence, sexual abuse and HIV incidence among the undocumented?

9. What is the level of HIV awareness within the undocumented community, what specific areas of misinformation are prevalent?

10. What are the implications for HIV education given that most immigrants are acculturating to a nation in a post-sexual revolution without having had a sexual revolution in their nation of origin?

We would like to see a local epidemiological study of HIV infection that would focus exclusively on L.A. County undocumented Latinos, one that would give us a reliable estimate of how many are infected with the virus, where in our community infection has been most prevalent in terms of gender, region of residence, residency status, acculturation within U.S. and gay lifestyles, predominant language and literacy levels of the infected. (Some data may be available through the IMACS case management computer system used by APLA and ASC, among others, but existing data is incomplete).

11. Is immigration status determinative of when Latinos access care? What factor has more significance in determining when someone accesses care -immigration status, acculturation, experience accessing the healthcare system, integration within the Gay/Lesbian/BI/Transgender community?

12. Are there behavioral differences between Latinas - documented and undocumented - and other women that increase the risk for HIV infection?

13. What is the best medium to deliver HIV prevention messages for the undocumented? What is the demographic breakdown within this community in terms of literacy, access to print and non-print messages?

14. Do undocumented Latinas become ill faster than undocumented Latinos, and do cultural norms that dictate domestic roles (man as bread winner, woman as caretaker of children and spouse) have causal relationships with life expectancy for Latinas with HIV?

15. How many Latinos with HIV living in the U.S. have contracted the virus here, as compared to how many have contracted the virus in their country of origin or another country? Demonstration that most have contracted the virus here might be useful in generating more services dollars.

16. How many Latinos with HIV have been granted an HIV waiver through the amnesty process, and how many have died while in the amnesty process and waiting for the waiver?

17. What is the estimated impact of HIV becoming endemic within the undocumented Latino community on the local economy, health care delivery system for the indigent?

18. What are the fiscal implications of excluding the undocumented with HIV from healthcare services, preventative care and early treatment?

Latinas

Perhaps the most vulnerable population at risk for HIV infection are Latinas. As reported in the attached summary sheet from L.A. County AIDS Epidemiology, Latinas make up 33% of the female diagnosed AIDS cases in 1992.

Recorded means of transmission for Latinas in L.A. county differs from means of transmission for Black or White women. Although in each population infection is attributed to heterosexual contact about 40 percent of the time, only 20 percent of Latina infections are attributed to injection drug use, while 30 and 38 percent is attributed to IDU in for White and Black women, respectively (Table 3 Page 4).

As noted above, 76% of Latinas with AIDS are between 20 and 49 years of age (Figures 4 and 5.)

It is unknown to Alianza through actual facts and figures what percentage of Latinas with HIV are married, what their primary language is, what their level of acculturation is, how many children they have. It seems from experience at the outpatient and case management service provided that most are married, with children, and speak Spanish as their primary language. It is also unknown where most Latinas with AIDS reside within the county, how many live with their spouse, and how many are undocumented.

Effective targeting of prevention education messages is dependent upon accurate documentation of this anecdotal evidence.

We are aware of only two HIV test sites that inquires about sex between women as a possible source of transmission: The Valley Community Clinic in North Hollywood and the Los Angeles Gay & Lesbian Community Services Center.

The local Ryan White Planning Council has demonstrated great success over the last few years in establishing a community-based network of outpatient care to the medically indigent of the county. Among others, the T.H.E Clinic in South Central, the AHF Clinics in Hollywood, Sherman Oaks and Downtown, and the Gay & Lesbian Community Services Center have women's programs for outpatient care. Unfortunately, should an undocumented woman need hospitalization, all CBOs must refer their clients to county facilities. It is in this transition that continuity of care suffers.

As the attached list indicates, case management, food, and other services are available to Latinas.

As Alva Moreno of Avance Human Services notes, the impact on Latinas is often severe as they strive to continue to fill cultural roles within marriage and live with HIV. Often, as the infected husband falls ill, the wife and family face loss of income as the primary means of income disappears. Within cultural norms, the woman must focus on care for her ill husband and/or children, giving secondary consideration at best to her own health. She must also worry about the future of her children as she herself becomes ill.

Finally, it should be noted that reported Latina AIDS cases have increase 121% in L.A. County over the last five years, and that it seems most women learn of their HIV status in conjunction with pregnancy.

Suggested Research Questions

19. What is the best medium to deliver HIV prevention messages for undocumented Latinas and Latinas who are legal residents? What is the demographic breakdown within this community in terms of literacy, access to print and non-print messages?

20. Is there a difference in risk for HIV infection between U. S. - acculturated and non-acculturated Latinas? An in-depth study of risk factors based on level of acculturation, place of birth, marital status, and income could be very useful in targeting messages to Latinas.

21. Is there demonstrable correlation between culturally dictated stress factors (having to care husbands, children first) and life expectancy for HIV-infected Latinas?

Substance Misusers: Suggested Research Questions:

22. Anecdotal evidence suggests that especially among Eastside Latinos, HIV transmission through injection drug use is on the rise. An epidemiological study of transmission patterns based on geography and acculturation, as well as injection drug use and non-injection drug use, may be critical to detecting a new increase in infection among L.A. 's Eastside Latino community.

23. To what extent is the lack of drug treatment access for the undocumented contributing to the spread of HIV among undocumented substance misusers?

Incarcerated: Suggested Research Questions

24. Are Latino incarcerated more likely than non-incarcerated Latinos to contract HIV while incarcerated?

25. How many Latino AIDS cases in L.A. County can be traced to sexual contact with an incarcerated or formerly incarcerated Latino?

26. Does transmission through incarceration represent a significant path of spread of HI V into the Latino community?

27. What is the marita/ status of incarcerated Latinos with HIV?

TB infected: Suggested Research Questions

28. What treatment modalities are most effective in addressing dual diagnosis among Latinos with HIV and TB?

29. Is dfrect observed treatment more effective in combating TB among the HI V infected?

Youth: Suggested Research Questions

30. How much more at risk for HlV are emancipated and runaway Latino youth than those who still live at home?

31. Are self gay-identification and acculturation into U. S. lifestyle significant factors in assessing risk for HI V infection?

32. Does education of parents first or simultaneously with students make a difference in effectively educating Latino youth about HIV risk and causing behavior changes with regard to risky behavior?

Pediatrics: Suggested Research Questions

33. Can useful projections be generated on the number of Latino orphans resulting from death of parents because of AIDS, and availability of services to these children, as well as the impact on the community?

34. How do rates of perinatal transmission of HI V compare for Latinos and nonLatinos, and why the differences? Are Latinas less likely to consider abortion?

Latina Lesbians: Suggested Research Questions

35. Are Latina Lesbians more likely to engage in high risk sex? Do they consider themselves at risk?

36. Are immigrant Lesbian Latinas at greater risk than non-immigrant?

37. Is self-esteem a greater factor in determining risk among Latina Lesbians?

Men Who Have Sex With Men: Suggested Research Questions

38. Does self-identification as Gay Latino affect at what stage of infection men who have sex with men access care or test for HIV?

39. Does acculturation within U.S. and Gay lifestyles affect when men who have sex with men access care or test for HI V?

40. What are the most effective means of outreach and education to break the chain of infection among sex workers, and non-Gay identified men who have sex with men?

Available Resources

As researchers, you may be interested in contacting one of the agencies listed below. which are included in this partial list of HIV services available to the L.A. Latino community.

AIDS Drug Program

Gay & Lesbian Community Services

Center

Case Management:

AIDS Project Los Angeles

AIDS Service Center

AltaMed Health Services

Being Alive (Peer to Peer)

Cara a Cara Latino AIDS Project

Milagros AIDS Project

Whittier/Rio Hondo AIDS Project

Food Bank:

Milagros AIDS Project

Minority AiDS Project

Legal Services:

AIDS Service Center

Legal AID Foundation

Lambda Legal Defense and Education

Fund

Gay & Lesbian Community Services

Center

Outpatient Care:

AIDS Heathcare Foundation Clinics

(Hollywood, Downtown, Valley)

AltaMed HIV Health Services

Children's Hospital

East Valley Community Health Center

El Proyecto del Barrio

City of Long Beach Department of Health

Los Angeles Free Clinic

Northeast Valley Health Corporation

St. Mary's Medical Center

Valley Community Clinic

City of Pasadena/Andrew Escajeda Clinic

Jeffrey Goodman Clinic of the Gay &

Lesbian Community Services Center

Watts Health Foundation

T.H.E. Women's Clinic

H. Claude Hudson Comprehensive Health

Center

Long Beach Comprehensive Health

Center

Harbor UCLA Medical Center

King-Drew Medical Center

LAC-USC Medical Center

Prevention Education and Outreach:

Avance Human Services

Bienestar Latino AIDS Project/Gay Men of

Color Consortium

California Drug Consultants

Clinica Msr. Oscar Romero

Clinica Para Las Americas

CORE Program

El Centro del Pueblo

El Centro Human Services' Milagros AIDS

Project

Jovenes

Southern California Youth & Family Center

Residential/Hospice Care:

AIDS Healthcare Foundation Hospices

Caring for Babies with AIDS

Homestead Hospice and Shelter

Serra Ancillary Care

Psychosocial Support:

AIDS Service Center Bienestar Latino AIDS Project L.A. Shanti Foundation Milagros AIDS Project

Publications:

Impacto Latino - APLA

Being Alive Newsletter Spanish Section De Ambiente

Treatment Advocacy:

AIDS Project Los Angeles

Bienestar Latino AIDS Project

Translation:

Gay Men of Color Consortium Special Services for Groups

Substance Abuse Services:

Prototypes/W.A. R.N

Southern California Alcohol and Drug

Program

Tarzan a Treatment Center

Transportation:

Milagros AIDS Project

AltaMed Health Services

Support Groups:

Bienestar Latino AIDS Project Cara a Cara Latino AIDS Project

Testing:

AltaMed HIV Health Services

Northeast Valley

Gay Men of Color Consortium

Gay & Lesbian Community Services

Center

SUMMARY OF AIDS AMONG HISPANICS

Los ANGELES COUNTY

OCTOBER 31, 1993

As of October 31, 1993, there have been 5,279 AIDS cases and 3,031 (57%) deaths among Hispanics (Figure 1).

29% (n=948) of adult male AIDS cases diagnosed in 1992 Were Hispanic (Figure 2).

33% (n=71) of adult female AIDS cases diagnosed in 1992 were Hispanic (Figure 3).

The number of adult Hispanic AIDS cases has increased each year since 1 982 (Figures 1, 2, and 3)

90% (n=4,431) of male Hispanic AIDS cases are 20 - 49 years of age (Figure 4).

76% (n=265) of female Hispanic AIDS cases are 20 - 49 years of age (Figure 5).

81% (n=3,969) of adult male Hispanic AIDS cases reported having sex with another man; 6% (n=294) also use injection drugs (Figures 6 and 7)

39% (n = I 24) of adult female Hispanic AIDS cases were infected through heterosexual contact with an HIV-infected partner (Figure 8).

The number of AIDS cases among adult Hispanic females who were infected through heterosexual contact or who are not aware of how they were infected is increasing (Figure 9)

Source: HIV Epidemiology Program, as of 10/31/93