Lesbians in Madrid have a complicated history with AIDS. For the most part, it has not impacted our community in the same way it impacted other members of the rainbow. At the same time, the virus did impact our relationship with other members of the rainbow and organizations that represented us. Like the events around Pride happening parallel to the HIV / AIDS epidemic, it strengthened some lesbians relationships with the LGBT community, pushed some Spanish lesbians more towards queer activism and pushed some of us further away from gay men. History is always messy, and lesbians rarely act in concert together as we represent a diverse and amazing bunch of women.

While the epidemic impacted lesbian relationships with the rest of the collective, HIV and AIDS had a specific impact on lesbians in the Comunidad de Madrid: it largely made them invisible in many areas of health and decreased their lack of already low visibility in other areas. Patterns that started at the beginning of the aids epidemic continue to the present, with only a few moments of hope that were rarely followed through on.

The topic of lesbian intersections with HIV / AIDS is important for understanding the current and historical climate around lesbians and lesbian sexuality in Madrid and Spain more widely.  It is worth reading about and learning about.  This history is as comprehensive as it can be, but it is not completely exhaustive, with the potential for new data and stories to emerge that could change some of the conclusions reached in some sections.[1]

The nature of HIV and AIDS as it relates to lesbians means the history around this topic is a bit disjointed.  This is in part because, unlike the situation for gay men, lesbians were made invisible in medicine, in healthcare, in efforts to stop transmission of the virus and in treatment for those who had the virus.  All of these are common themes that were referenced by LGTB and homosexual rights groups active in the region when engaging in their activism. Consequently, there was often a disconnect between the two, the medical side and the activism side.

To help people better understand the history of lesbians and HIIV / AIDS in the Comunidad de Madrid, this essay is broken down into five parts.  The first is AIDS and STI related statistics in the region, examining prevalence and comparting women and lesbians to other groups.  The second section looks at the history of HIV / AIDS treatment and advances in treatment specifically for women. The third section looks at women, and the lesbian experience in particular, when it comes to treatment of HIV and AIDS.   The fourth section looks at efforts by the public sector including government ministries and public health to combat the transmission of HIV and AIDS.  The last section looks specifically at the work of LGTB organizations activism to combat HIV / AIDS and improve healthcare around the virus.

While the early history of the virus does not deal with lesbians directly, it does set the scene for later lesbian interactions both with the virus and HIV / AIDS activism around the virus.

The history of AIDS in Spain, healthcare and activism around it has a shared starting point. AIDS first appeared in Spain in October 1981 at Hospital Vall d'Hebron de Barcelona in a 35-year-old-man. This was a mere four months after the first five cases had been described by doctors in Los Angeles, California. The name AIDS, SIDA in Spanish, would first be applied to the disease in 1982. At that time, almost nothing was known about it. The case was discovered after the man had arrived at the hospital with Kaposi sarcoma, headaches, weight loss, appetite loss, hemiplegia and recovering from gonorrhea. Doctors performed a CT scan on the patient, discovered a 3-centimeter mass in his head and performed surgery to remove it. The patient died four days later. Dr. Carmen Navarro, a tissue analyst at the hospital, wanted to examine a sample from the surgery as she had detected granulomatous toxoplasmosis, a parasitic infection, that she had never seen present with someone with Kaposi sarcoma before. This opportunistic infection was what caused them to link their case with those in Los Angeles. When doctors looked more closely at the case and compared it to those in the United States, they found the man had had several sexual encounters with men in New York City in 1974 and Turkey in 1980. At the time of his death, he had been in a steady relationship.[2]

AIDS immediately became associated with homosexuality, and specifically male homosexuality and the perceived way of life that came with being a gay man, because the first discovered case was in a gay man and because the first cases discovered in the United States were found in a cluster of gay men. This association stuck even as AIDS cases were discovered a wider population, including in pediatric cases in Spain in late 1982 and early 1983, along with the discovery that AIDS could be transmitted from mother to fetus. It would be from these other types of cases that the first AIDS activists in Spain would emerge. One of the earliest would be an organization supporting children who contracted AIDS, offering them activities and supporting them in the face of social exclusion. By 1983, HIV was discovered to be a virus, along with the knowledge that it was transmitted through sexual penetration and sharing of needles during illicit drug use. It was finally given the name HIV in 1986. Early patients had short life expectancies, most not living more than a few years after contracting the virus. Within a few years of the virus being discovered, Spanish health authorities realized that the biggest cause of its transmission was not, like the United States and other places, unprotected sex but shared needles from intravenous drug use. Despite this, the AIDS crisis in Spain led to heavy stigmatization against homosexuals, more so than other nearby countries like France or the United Kingdom.

The first publicized AIDS case was found in Madrid in June 1983, with Diario 16 running "Primer homosexual con “cáncer gay” en Madrid"[3]as their headline. In contrast, El País had the headline of, "Un nuevo caso del síndrome de inmunidad deficiente en Madrid".[4]  It was discovered at Hospital Clínico de San Carlos, when a male homosexual patient getting treatment by a dermatologist for Kaposi's sarcoma was diagnosed with it. It is likely there was another case in Madrid by mid-May 1983 as it was referenced by an AIDS monitoring commission set up by the Ministry of Health after cases were found in Sevilla.[5]

Less than a year later, in March 1984, the Instituto Nacional de la Salud (Insalud) reported 20 cases of AIDS had been detected in Spain, with four of those patients having died already.  Among the confirmed cases, four were homosexuals or bisexuals, one was a homosexual drug addicts, one was a drug addicted and two were hemophiliacs.  Five of the eight confirmed cases were in Madrid.   Among the deaths, two were homosexuals and two were hemophiliacs.[6]

AIDS created a climate of fear in parts of Madrid's more social environments, with people in bars afraid to share drinks in the early and mid-1980s because of a belief they might contract AIDS that way.[7]

The fear was made worse because the mortality rate in the early years was close to 50%.  The fear was not just among members of the general population but also among medical practitioners, among doctors. AIDS tests at the time used to produce red dots if positive, and this was mirrored in hospitals with red dot stickers placed on patient charts and even patient beds to let people publicly know they had AIDS.  This discriminatory practice would take years to end in public hospitals. [8]ç

By 1986, the epidemic had begun to hit the rest of Spain all at once. In Madrid, one of the hospitals at ground zero was Hospital Universitario 12 de Octubre. It soon filled up hospital beds across the country. The first antiretroviral drug, AZT, arrived in Spain in 1987, but did not do much to help AIDS patients as it was highly toxic; there were still few options six years out from the start of the epidemic to help improve the survival rate.[9]

A ministerial order was made by the Ministerio de Sanidad in 1987 that obliged all organ and blood donations to be tested for AIDS before using them on patients.  At the same time, the Ministerio de Sanidad also launched a program called, "SI DA, NO DA", designed to promote the use of condom usage.

One of the results of the AIDS pandemic in Spain by the early 1990s, according to a paper by Ricardo Llamas, was that in the mind of the public, AIDS had often rendered gay men to little more than bodies and lesbians to a place where they did not even exist because of a lack of visibility as a result of the media attention given to their male counterparts. Male homosexuals became defined almost solely by their sexual practices, and the contagion they could get from them.

While the situation related to gay men and lesbians with regards to AIDS and HIV was bad, the picture in Spain as a whole was particularly bleak when compared to other countries in the early 1990s, with Spain recording one of the highest transmission rates in Europe after having initially been spared the worst of it. The high rate was in large part because of intravenous drug users who accounted for around 60% of new cases by 1993. Spain's initial response to the AIDS crisis involved a medical approach on both a national and regional level, with expert committees established, focusing on epidemiological surveillance, and producing guidelines for AIDS treatment by health care professionals. There was not a patient centered approach, looking at the impacted populations and how to reduce transmission inside these groups. Medical policy was patient isolation, not one reducing transmission. At the same time when efforts along the lines of reducing transmission were done, they were often criticized by the Catholic Church who opposed popularizing the use of condoms, encouraging safe-sex among teenagers and doing specific outreach targeting homosexual men.  This opposition was done in the media, in the halls of the national and local governments and, in a few cases, the courts.[10]

Despite an awareness for a number of years that AIDS could be transmitted from a mother to a fetus, it was only in 1993 that the clinical definition of AIDS changed in Spain to allow for the possibility that women could contract the virus. For some feminists in Spain, this was viewed as another type of violence enacted upon women's bodies as the medical establishment, aware of the virus since 1981, had not bothered to verify its transmissibility to women.

That same year, the first female-to-female transmission of HIV as a result of sexual contact was confirmed in Austin, Texas in 1993 by Dr. David Wright.  He said it as impossible that the women got it as a result of sex with men or shared needles, the most common routes of contracting the virus among women.  This news covered in the Spanish media, including in El País and Diario 16.  It would take another 20 years before the United States government, through the Centers for Disease Control, would acknowledge such transmission occurred.[11]

With the introduction of modern antiretroviral treatments in 1996, initially a three-drug treatment, the AIDS epidemic in Madrid and Spain as a whole changed quickly as these treatments reduced mortality rates and made it possible for more and more people to live with the virus. [12]

The situation for lesbians as it related to the AIDS crisis remained much the same for the 2000s with the exception that medical advances during the late 1990s had begun to make AIDS a less deadly. This included the approval of a protease inhibitor, highly active antiretroviral therapy, and new methods of HIV testing. AIDS deaths for women had peaked for women in 1996 with 1,137 deaths but were 555 in 1997 and in the 300s until 2002 when they dipped below that number for the first time since 1990. Similar patterns in AIDS related deaths played out for Spanish men. By the end of the decade, there would be only 207 AIDS related deaths for women. The picture related to HIV / AIDS in Spain changed again in 2006, when the number of AIDS cases was less than the number of HIV diagnoses.[13]

There was a lack of educational materials available for lesbians, there was also a lack of research done in Spain in the period between 1998 and 2012 on the sexual behavior of lesbians and other women who had sex with women, or statistics on prevalence inside this group for any sexually transmitted disease. Scholars have attributed the lack of research in this area to machoism and sexism in general, and as a result of pressure from the LGBT community who do not view lesbians as important as they are viewed as lower risk for contracting AIDS with the belief that resources should not be diverted away from gay men and transwomen towards lesbians.

Despite the reported case from 1993, the United States Centers for Disease Control published an article in 2006 that said there were no documented cases in the United States of female-to-female HIV / AIDS transmission but noted that of 246,461 cases of women with HIV reported in the country by December 2004 that 7,381 involved women who had sex with women. The report in the article titled, "HIV / AIDS among women who have sex with women" said that most of these women had other risk factors including being intravenous drug users, having had sex with men or having had blood transfusions.  Of those women, 534 only had sex with women, which they repeated that most in those group also had other risk factors, primarily being drug users. They tried to look to see if female-to-female transmission was possible within that group of 534 but said that women refused to participate or the other risk factors made it hard to determine if female-to-female transmission was occurring.  Another issue with the data was the in the original dataset of 246,461 women, 60% of the physicians reporting HIV transmission did not ask or the woman did not provide information if she had sex with other women.[14]

The situation changed a decade later. A world first happened in 2014 related to lesbians and AIDS risks. The Morbidity and Mortality Weekly Report, a publication by the United States Center for Disease Control and Prevention, documented one its first likely confirmed cases of woman-to-woman transmission of AIDS in 2014. The publication was important because back in 1981, The Morbidity and Mortality Weekly Report was the first to document the existence of AIDS. In the case discussed, one partner had contacted the virus from a previous heterosexual relationship, and likely given it to her partner after they both stopped taking antivirals, stopped being tracked by a sexual health program and then had unprotected sex while the partner who had AIDS was menstruating. The virus was 98% genetically similar between the two women.

The COVID-19 pandemic period brought little change to the status quo when it came to lesbians and HIV / AIDS in Madrid. Most of the visible activism around the issue had died a number of years back, and fewer prevention campaigns appearing to take place. Lesbians, bisexual women and women who had sex with women in the pandemic period were largely ignored by general efforts to reduce HIV / AIDS. LGBT organizations were more miss in a hit or miss situation of if they provided information for women’s sexual health, instead extending almost all their resources on sexual health to gay men, transwomen and male sex workers.

STI and HIV / AIDS statistics

HIV and AIDS data for the Comunidad de Madrid can be a challenging issue, especially because reports by government entities who keep track of and report on this data often do not add up. An example of this is the report by the Registro Nacional de Casos de Sida.  This report is published annually by the Ministerio de Ciencia e Innovación.  The 2020[15]and 2021[16] editions both contain historical data regarding the number of new cases of HIV in the region of Madrid by year.  This historical data is often different.  For example, it says the number of new HIV diagnosis in 2007 was 1,047 and in 2008 was 1,322 in the 2020 report.  The following year, these numbers were 1,055 and 1,325 respectively. When the total annual new cases are added up in these reports and excluding 2020 and 2021 data, there is a difference of 624 new cases reported by year.

Historically, and continuing to the present, HIV / AIDS statistics locally in Madrid and nationally in Spain did not differentiate lesbians[17]and heterosexual women, making it difficult to draw conclusions about how women, and lesbian women particularly, contracted AIDS.  The same issue also existed for things like cervical cancer and chronic infections. Further, women with HIV / AIDS were not considered carriers but only considered transmission vectors. Official transmission statistics from the Ministerio de Sanidad in the late 1990s continued to ignore the possibility of female-to-female HIV / AIDS transmission. When it did occur or was suspected of occurring, such transmission vectors were labeled as being "of unknown origin" or labeled as a result of heterosexual sex instead.^[18]

AIDS has been a killer of women across the whole of Spain. Data regarding the total number of AIDS deaths by year and sex for the Comunidad de Madrid does not appear to be available.  National data, provided in a report by the Unidad de vigilancia de VIH, ITS y hepatitis B, says between 1981 and 2020, there were 59,891 total deaths in Spain from AIDS, of which 11,44 of these deaths were of women. The total number of deaths for women from AIDS peaked in 1996, when 1,137 women died from the virus and complications related to it. The national peak for everyone in 1995[19]had a mortality rate of 5.6 women per 100,000 women in Spain. The following year, this number had more than halved to 555, and then dropped more to 323 in 1998.  Only in 1982, when there were four confirmed deaths as a result of AIDS was there sex parity, 50%, in the percentage of victims killed by the virus. 1984, with four deaths of women, had the next highest percentage of deaths when compared to men at 33.3.%.  Excluding the first year the virus was detected in Spain, there were a handful of years when the death of women from AIDS was more than 20% of all deaths from AIDS. This happened in 1985 when 14 women or 20.3% of all AIDS victims were women, 2001 when 337 or 20.6% of all victims were women,  2003 when 343 or 21.0% of victims were women, 2006 when 279 or 21.2% of all victims were women, the period between 2008 and 2012 when between 20.3% and 23.3% of all victims of AIDS were women, 2016 when 113 or 22.7% were women, and 2017 with 332 or 22.6% of all deaths were women.

Public health institutions specifically dealing with HIV and AIDS also often failed to collect data related to women, and lesbians in particular, even as they collected similar data about gay men. For example, SPNS/CNE/Centro Sandoval collected data on the condom usage rate for anal penetration with a stable partner by homosexual gay men during their first trip to be tested for AIDS at Centro Sandoval in 1997.  No comparable data was collected for lesbian women.

Very rarely, public entities released HIV transmission data related to lesbians. In 2014, Jorge del Romero, Director of the Centro Sandoval de Madrid, said that 95% of the AIDS cases the clinic had treated in lesbian women were ones where the lesbian or bisexual woman had acquired the virus after sexual context with a male.  There was no additional data to back this up.

There is only one report where the transmission data is available for Spain regarding women who have sex with women.  It was published by Madrid Salud and is data from Centro Sanitario Sandoval for the period between 2003 to 2006. The report is titled, "Informe anual del Sistema Nacional de Salud". Among the cases of HIV diagnosed in that period, 95 were a result intravenous drug use, 107 were male prostitutes, 3,450 as a result of men having sex with men, 2,453 were men who got it from having heterosexual sex with women, 2,201 were women who got it from having heterosexual sex with men, 2,606 were female prostitutes and 54 were a result of women having sex with women.

A 2023 booklet by the Instituto de las Mujeres titled, "Las Mujeres y el VIH SIDA" only mentioned the word lesbian once, in the context of an organization name.  The word homosexual was never mentioned.  The phrase "mujeres que tienen sexo con mujeres" or the acronym MSM, the female equivalent in Spanish to male-male sexual transmission, were also never mentioned. It was mentioned that 20 to 25% of the transmission vectors for women were unknown.

International organizations reporting on or operating in Spain often had similar issues with not providing data specifically about lesbians, even as they reported on other members of the collective. A UNAIDS Under Global AIDS Response Progress Reporting Guidelines, 2011–2013 found a prevalence rate of 12.9% among women who used illicit drugs intravenously and contracting AIDS. This data is some of the only available data about HIV and AIDS among Spanish women from that period. While transgender women were mentioned in the study, mentioning that as many as 30% of transgender women in Spain may use illicit drugs intravenously, no specific mention was made regarding lesbian drug use. This once again results in again only being able to extrapolate numbers based on assumptions around women as a whole as it relates to intravenous drug use.[20]

As a result of the lack of data specifically collected about lesbians, the best potential way to extrapolate potential lesbian related cases on a national level is to assume most cases of unknown transmission mode or other transmission mode for women are likely a result of women having sex with women since that transmission mode is intentionally excluded.  With this assumption in mind, the national peak was likely in 1994, with sixty-two cases, with other peaks occurring in 1997 with fifty-six cases, 2000 with fifty-one cases, 2011 with thirty-six cases, 2015 with twenty cases and 2021 with sixteen cases.  This is all supposition though, and will likely remain so as the same institutional, political and cultural factors that create problems for lesbians in getting HIV / AIDS and other STI treatment remain when it comes to data collection, and nothing in the current political landscape suggests change is going to happen.

Data regarding transmission rates in the Comunidad de Madrid is available for the period between 1983 and June 2022.  In that time frame, there were 159 cases of HIV in women in the Comunidad de Madrid that had an unknown cause.  This was the third leading cause of HIV among women in the region, behind intravenous drug use at 2,445 and heterosexual sex with 1,563 cases. Maternal transmission to female infants was lower at 139[21]. There were forty-five cases of transmission to women as a result of blood transfusions and to women seven cases of transmission to women as a result of blood products. There were 451 new HIV diagnosis in the Comunidad de Madrid in 2021.  Of these, 57 were classified has having an unknown origin though most were among men.

Some independent researchers did focus on prevalence of HIV and other STIs in lesbians and bisexual women in Spain. A June 2017 study by Sara Diaz-Salazar de la Flor of women who had sex with women in Spain[22]conducted in November 2016 found 71.2% of women said they did not have an STI, 7.6% did not know and 21.2% had an STI. Only one of the people with an STI had HIV, the same rate as trichomonas.  The vast majority who had an STI had chlamydia (12), followed by HPV (10) and vaginal bacteria (9). 80.6% of women reported they had sexual relations while they were menstruating.

What should be a potential source of statistical data regarding lesbian sexual health data, including HIV / AIDS statistics are health surveys by LGTB organizations.  On the whole though, such organizations in Madrid rarely collected this data on year to year and longitudinal basis or even sporadically, even as they did collect it about other members of the collective and about male sex workers.  When such organizations did reference data about prevalence, it was often to regurgitate statistics produced in the United States, without any explanation about how this data was applicable to a Spanish population, with a different history with HIV / AIDS and a different health care system. An example of this involves COGAM who collected self-reported prevalence rates of AIDS in gay men in 1995. Despite also representing lesbians, they did not collect any self-reported prevalence data on rate of AIDS in lesbians their organization. COGAM collected data on the percentage of male homosexuals who used safe sex methods as part of their AIDS prevention activity in 1998 but did not collect comparable data about bisexual women or lesbians.

There are some exceptions to this, notably reports published by FELGT, with one published in 2011 and another published in 2012.  FELGTB’s 2011 review of existing research on lesbians found that heterosexual women and lesbians are both 10 to 20% likely to have an STI during their lifetime with Trichomonas vaginalis the most common STI reported at 6%, followed by HPV at 4.8%, Chlamydia at 4.6%, herpes at 3.3%, pelvic inflammatory disease at 2%, gonorrhea at 1.6%, syphilis at 0.3% and HIV at 0.1%. Almost all of this data was from research done in the United States. They also said that HIV / AIDS was exceedingly rare among lesbians, with no confirmed transmission cases between women having sex with women in the United States as of 2006. That was against a backdrop of US CDC data that said there were 7,381 cases of HIV among women who had sex with women, but they had other risk factors such as intravenous drug use, occasional sex with infected men or blood transfusions. Of those 7,381 cases, only 534 said they had sex exclusively with men, 486 had other risk factors for HIV while 48 did not and still contracted AIDS. While the US CDC said they had no data on transmission of cases of HIV between women, they did acknowledge that cases of transmission had been reported and the Atlanta office of the CDC published case studies about specific women who had contracted HIV after sex with other women. An Australian study cited by FELGTB in 2011 found that 16.6% of self-identified heterosexual women had STIs, while 23.4% of self-identified lesbians had STIs and 37.9% of bisexual women had STIs. The Australian authors attributed to the higher rates to the higher number of sexual partners had by lesbian and bisexual women, and that heterosexual women were more likely to use some form of birth control like a condom compared to lesbians.

In March 2012, FELGTB published a report titled, "Salud sexual, VIH y otras ITS en mujeres lesbianas, bisexuales y otras mujeres que tienen sexo con mujeres (MSM)[23]".  It contained comprehensive information about lesbian risk for contracting HIV and AIDS and methods to prevent it.  Most of the research they cited was foreign.  They cited search that said MSM uses various body stimulation techniques including massaging, kissing, licking, and sucking; these are considered part of sex and not part of foreplay.  While the guide said these activities were low risk, they did not provide any data to support that conclusion or any numbers to specify efficacy levels of various safe sex practices among lesbians.  They cited a study from the United States that said the prevalence rate of HIV among lesbians was 0.1% while HPV was 4.8%.  It also cited a 2005 study by Ruth McNair from San Francisco that found an HIV prevalence rate among lesbians at 1.2% and 5.4% for Hepatitis B. The study found that lesbians with HIV engaged in high risk behaviors including intravenous drug use, sharing needles and unprotected sex with men. A 2012 FELGTB report about sex between women said the STD risk was the same as for women who had sex with men, with the STD prevalence rate between 10% and 20% for both groups.

The current political climate and membership percentages inside LGTB organizations in Madrid means female sexed sexual health data is a low priority. Women and lesbian groups are inactive, membership of self-identified lesbians hovers around 10 to 15% and male, both gay men and transwomen, sexual health continues to be a bigger interest, especially as it provides a steady income source for some of these organizations to engage in programming.  There is no evidence that LGTB organizations will start engaging in research to provide quality statistics related to the prevalence of HIV and other STIs in lesbians.

HIV / AIDS and other STI treatment

AIDS research and AIDS treatment rendered women invisible, and lesbian women even more invisible from a social perspective. This invisibility made it hard for women and lesbians to launch interventions to lobby for their own needs or for others to launch interventions aimed at them.  There is little information about sex specific treatments in Spain, outside the context of pregnancy and how this is manifested in treatment plans for the early period to the present, especially from a patient perspective as to what their expectations should be related to treatment.

With the introduction of modern antiretroviral treatments in 1996, the AIDS epidemic in Madrid and Spain as a whole changed quickly as these treatments reduced mortality rates and made it possible for more and more people to live with the virus.  These drugs turned AIDS from a death sentence into a chronic condition.[24]

The protocol in public health in the mid to late 2010s was HIV positive patients were being administered with antiretroviral treatment, with around 80% of all HIV positive patients taking them. Patients also generally had follow-up appointments every four months.[25]

Treatment for women with HIV / AIDS by the 2010s appeared both very focused, and at times shuttled offer to the side with men with HIV / AIDS being treated as the default patient, even as publications by national and regional health bodies said worldwide half the people with HIV were women. For example, women and their specific needs related to HIV treatment were addressed in the 169 page February 2012 guide, "Documento de consenso de la Secretaría del Plan Nacional sobre el Sida /GESIDA sobre la Asistencia en el ámbito sanitario a las mujeres con infección por el VIH".  At the same time, a paper by José María Casanova Colominas, a specialist at Centro de Salud Virgen de Begoña, María Carmen Rodríguez Fernández, a specialist at Centro de Salud San Cristóbal and Manuel Gómez García, a specialist at Centro de Salud Mirasierra, suggested some specific female centered HIV treatment approaches in a 2013 paper titled " Manejo del paciente con VIH en Atención Primaria".  This included performing annual cervical cancer screenings and conforming to the usual protocol for performing mammograms.  Otherwise, these specialists said otherwise that women get the same evaluation, follow up and objective treatment as men, except in the case of pregnancy when the specific ART drugs used changes to avoid vertical transmission of the virus to the newborn.  Otherwise, the only female specific treatment plan mentioned involved considerations around pregnancy.[26]

The need for specific female centered approach was important because women getting treatment for HIV / AIDS have some specific clinical needs that differentiate them from males. Some antiretroviral (ARV) drugs for women with HIV have significant interactions with hormonal contraceptives (AII) and hormone replacement therapy. This was acknowledged in some guides for AIDS treatment in Spain and Madrid specifically by 2019, but further guidance specifically for treatment of women was then put into separate documents provided by other organizations because of the specialized nature of treating women with HIV / AIDS compared to other adults[27]with HIV / AIDS.[28]

Madrid Salud offered free, anonymous HIV rapid testing at eight health centers in 2020.  Of these, only one was located outside the city, in Torrejón de Ardoz. Of the remaining, five were located in the district of Centro of which two were in Cortes, and one each in Embajadores, Justicia and Palacio.  The remaining two were in Villaverde and Latina.  This inequitable distribution of health centers of offering HIV testing existed against a backdrop where Puente de Vallecas had become one of the larger queer districts and where the number of new HIV cases percentage wise still continued to be among homosexual men, transexuals and intravenous drug users.

Experience in healthcare

One area which is largely absent in the narrative around lesbian experiences with HIV / AIDS involves treatment related to the virus, and experiences related to seeking a diagnosis or treatment. It is an area, like many areas of women’s health in general, not widely explored. This is compounded for lesbians by not having a clear picture of how many lesbians had HIV / AIDS.  Given some of the risk factors in the early years and the high rates of AIDS in the country as a result of the early approach to the epidemic, it is likely there among the 712 women who got AIDS between 1982 and 1987 that there were lesbians who got AIDS as a result of sex with men, sharing needles, blood products and transfusions.  Their names are just not known and will never be known, like many victims of the epidemic.

In the early years of the epidemic, the healthcare situation was particularly bleak with doctors fearful that they would contract the virus from patients and mortality rates being very high, with patients often suffering for months in the hospital before they finally died. Inside hospital wards, patients could find themselves isolated and alone.  Care was not centered around patient needs.

Lesbians who contracted HIV or AIDS had little support from within their own ranks and the broader homosexual front movement in the 1980s and early 1990s. The view from within the lesbian and LGTB community was they could turn to Anti-AIDS Citizens' Committees for assistance in prevention and treatment.^[29]

While some is known and discussed about experiences for lesbian AIDS patients in the early period, that little historical knowledge disappears during the next two decades when the rates of women with HIV and AIDS increased dramatically, with 1994 being a peak year in cases for women with 1495 new cases reported across Spain, of which 62 were unknown, a category often used for lesbians.

Lesbian experiences in healthcare as they relate to STIs and HIV / AIDS finally begin to get documented and told during the early 2010s. In the early 2010s, women who were out lesbians to their doctors who had STDs or who were suspected of having STDs or had symptoms of STDs were often told by their gynecologists that it was fine to continue unprotected sex with their partners because the gynecologist did not believe there was a risk involved of transmitting the virus to a partner.  This was despite the fact that vaginal fluid had been documented as a transmission vector for several STIs, including HIV.  An FELGTB report from 2011 on HIV said medical practitioners needed to be educated more on the topic, that heterocentrism and homophobia resulted in prejudice when it came to care of lesbians getting treatment for STIs, and that more specific training was needed to better identify profiles of lesbians and bisexual women likely to contract STIS. They also concluded there was a lack of political, academic and health system will to do more research specific to lesbian needs and to try to improve their specific sexual health, that there was a lack of systematic campaigns aimed at lesbians and bisexual women that left them more vulnerable.

The picture was little changed by June 2017 when Sara Diaz-Salazar de la Flor published a study of women who had sex with women in Spain. Discussing experiences related to healthcare professionals, her study found 58.8% of women reported having access to information about STIs that occur between women, with most getting that information from the Internet or someone close to them with only 12.9% having been informed of risks by their doctors. 81.1% of all women who had sex with women surveyed said their doctor had never asked them about their sexual orientation, while 57.6% had disclosed their sexual orientation to their doctor. Most women said they did not share their orientation because they did not think it necessary while 10.7% feared a homophobic response if they did. Of those women who shared their orientation, 39.8% felt uncomfortable with the response while 60.2% were comfortable with the response. Lesbians were also not always getting information on safe sex. 47.6% of the women surveyed reported that their doctor has offered them information on barrier methods, 27.1% had asked their doctor for information and had denied it, and 25.3% reported that their doctor for information and had given it.  Lesbians in the study were also unlikely to get regular gynecological exams.  Only 37.1% saw a gynecologist annually, compared to 36.5% who saw one when they had a specific need and 26.5% who never saw one.  The study also found that found that 66% of women who had sex with women had a pap smear in the past three years, much lower than their heterosexual counterparts who had a rate of 88%.  Only 53% of women who had sex with women had a mammogram in the past three years compared to 73% by women who had sex with men.

Another report related to experiences of members of the LGTB collective was published the follow year, in 2018.  Written by Guillermo López, the study found 20% of members of the LGTB felt discriminated against in public health.  For lesbians and bisexual women, this included denial of sexual and reproductive health care and not receiving information they needed from gynecologists. For LGTB people with AIDS, there were additional concerns this included health workers double gloving when touching them.  When women called to request an HIV test or get a consultation related to an STI, doctors often failed to ask their sexual orientation and just assumed these women were straight.

Like the past, there could also be political dimensions to accessing health care. In early 2022, the Comunidad de Madrid refused to provide HIV / AIDS treatment to irregular migrants.[30]

Little research has been done in the past regarding lesbian experiences in healthcare in relation to STIs and HIV.  From the onset, lesbians were isolated and alone in dealing with treatment for HIV and AIDS.  Little seems to have improved, especially taking into consideration lesbian sex and sexual orientation as it relates to their experiences interacting with health care.  Lesbians often fail to disclose their orientation as they see it as irrelevant to care or fear discrimination.  Lesbians get heterocentric treatment.  Lesbians are less likely than other cohorts of women to get tested and to get regular treatment related to their sexual health.  Nothing indicates a change in pattern is likely.

Preventing HIV / AIDS transmission

For centuries, women in Spain were told, “No sois nada más que vuestro sexo”[31]. This tended to mean sickly and givers of disease. This continued with the AIDS crisis: Women were not people but transmission vectors. For lesbians in 1980s and 1990s during the AIDS epidemic, this was a continuation of a societal view that rejected lesbians and lesbians sexual practices, because society did not view either lesbians or female-female sexual activity as real.  As a result, significant amounts of misinformation circulated around lesbians and HIV / AIDS, further denying these women their sexuality and continuing historical patterns of lesbian erasure.

Lesbians have been told since at least the late 1980s that dental dams are a tool that can be used to prevent the transmission of STIs, and specifically HIV, without any studies backing this up nor with any dental dams being licensed by national health agencies in the United States, United Kingdom, Australia or Spain as a means to prevent STI transmission during oral sex, a situation that remained true now as it did in 2010 and 2018.  No studies have been located showing the efficacy of dental dams for the prevention of STI transmission for female recieving cunninglus or anilingus.[32]

One of the big questions at the July 1992 8th International AIDS conference in Amsterdam was whether women / lesbians should use a dental dam when having sex with other women.  Some said yes. The Director of the Lesbian AIDS Project in New York, Amber Hollibaugh, said that some people consider lesbianism to be akin to a type of condom when it came to contracting AIDS.  She also pointed out no one had actually tested the efficacy dental dams at that point to find out of they actually worked to prevent the female-to-female transmission of AIDS. This at a time she said when HIV was exploding among lesbians in New York, with over 500 new cases reported in New York City. Discussing this issue was even more complicated because political lesbian feminists found discussing the issue of the use of dildos in lesbian safe sex practices challenging as it led to questions like, "Are you really a lesbian if you are using artificial penis penetration?" Women and lesbians in particular felt abandoned after the conference, with little support to conduct studies related to how women, and lesbians particularly, contracted the virus.  No one appeared to support the lesbian and women's organizations at the conference.

The Centers for Disease Control in the United States, more than Spanish health institutions, at least acknowledged and studied on a very limited basis the risks of STI transmission for women performing cunninglus on other women.  In 2021, they said, "Receiving oral sex on the vagina from a partner with HIV might cause HIV. This risk is thought to be extremely low and has not been well studied."  The CDC did not provide efficacy data for dental dams or condoms cut into squares to put put between the mouth and the vagina, though they did recommend them. They said the only real way to lower the risk is to being in a long-term monogamous relationship with a partner who does not have an STD.[33]

Because of the low rate of sexual transmission of HIV / AIDS between women having sex with women, there was still no official guidance on what sort of prophylaxis usage safe sex practices were most effective in preventing the transmission of the virus between women in 2014.  Because of this and a lack of general education, pre-exposure prophylaxis as a means of safe sex practice between lesbians had not really taken hold in Madrid by 2014.

LSD talked openly about drug use in the lesbian community.  They also talked about the fact that lesbians were sexually assaulted, and that some women who identified as lesbians had sex with men.  These actions all combined to make lesbians at risk for HIV and AIDS, and necessitated the LGTB community and public health officials to be inclusive of homosexual women when devising safe-sex campaigns, and not just aim them at men.[34] III Jornadas Feministas Estatales. Juntas y a por todo took place in Madrid in 1993, with LSD hosting a workshop titled “Sexo seguro y bollero”.[35]

LSD, La Radical Gai and Radical Moral were outliers in the Madrid LGTB community when it came to prevention of AIDS among lesbians. As the AIDS pandemic exponentially increased gay male participation in local LGTB groups, they focused on the goals of the majority membership and largely ignored women's sexual health in campaigns run by these organizations; almost none mentioned the prevention of AIDS via vaginal prevention, cleaning of sex toys or using vaginal prophylactics in their safe sex campaigns. There were some exceptions though. COGAM ran a campaign saying lesbians were not immune to AIDS in 1996. Unlike their campaigns aimed at men, they did not use photographs of women but instead used ballpoint pen sketches. The advice focused on oral practices like cunnilingus and through penetrative practices using toys or fingers.

Lesbians were aware that their sexual health was being ignored, though most that spoke out on the issue only did so from CRECUL president Elena de León said in 2018 that lesbians were forgotten in official campaigns by the local government in Madrid during the AIDS epidemic as the only tool the Comunidad de Madrid subsidized to fight AIDS transmission was a condom and women having sex with women were never featured in any awareness campaigns.

The Instituto de la Mujer prepared a report for the first time on women with HIV / AIDS in 1992. At the time the document was released, the Institute was between plans with the first plan having been focused on six areas, one of which was women's health, and a second of which was family and social protection. The document takes a heterocentric perspective to advice regarding the prevention of transmission. Lesbians and women who had sex with other women were not mentioned.

Lesbians continued to rarely ever the target of general campaigns in Spain to combat HIV and AIDS in the late 1990s and all the way into the early 2010s. One of the first such general campaigns not aimed explicitly at gay men was launched in 1999 for World AIDS Day, and was about the use of condoms in AIDS prevention. General campaigns in 2000, 2001, 2002, 2003, 2004, 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016 and 2017 also failed to address women who had sex with women. The government did have specific campaigns for men who had sex with men in 2008, 2009, 2010, 2011, 2014 and 2017. The government also had campaigns aimed at young people, for which women who had sex with women were not mentioned in their campaigns in 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006, 2007, 2008, 2009 and 2012. Among 38 campaigns to fight AIDS and HIV by the government between 1998 and 2012, only two even featured any pictures of women having sex with women, but the text and surrounding discussion made clear that these images were not designed to educate lesbians on safe sex practices but instead intended to capture heterosexual male audiences to educate them.

A 2009 report on HIV prevent activities by regional governments in Spain by the Ministerio de Sanidad focusing on prevent activities in the period between 1997 and 2009 mentioned the word lesbians three times, but always in a string of letters and they did not indicate a single programming event took place anywhere in Spain dedicated to this group.

After many years of being omitted from HIV/AIDS prevention literature by the Ministerio de Sanidad y Política, lesbians reappeared in 2009 with a picture of the lips of two women kissing outdoors with the phrase, "Si me besas, te transmitiré ternura", meaning, "If you kiss me, I will convey tenderness." The material is designed for a broader audience, and removes all idea of women and lesbian sexuality as it goes on to suggest the only sexual activity lesbians engage in is kissing on the lips in a maternal way. This was far removed from the AIDS prevention material of the 1990s created by Lesbianas Sin Dudas (LSD) that featured overt female reproductive genitalia when all the institutional materials only featured references to male genitalia and condoms.

One specific group of women were frequently targeted for information related to the transmission of HIV / AIDS. From 1997 to 2009, every regional government in Spain had programs to prevent HIV in women who were prostitutes in 2000, 2005, 2006, 2007, 2008 and 2009.  The Comunidad de Madrid had such programming every single year in that period.  There was no similar programming for other groups of women, including heterosexual women. This sort of approach to combatting AIDS occurred, even as the primary vector for getting the virus was sex with men, and statistics not breaking down the rate of women by if they were prostitutes. It follows historical patterns of women being disease vectors, instead of potential disease victims.

Discrimination against lesbians continued by state organs when it came to the production of sexual health materials for the prevention of HIV and AIDS. A 2018 booklet by stop sida, coordinadora gai-lesbiana done in collaboration with the Ministerio de Sanidad y Consumo only mentioned lesbians in organization names. All the pictures used were of men. The descriptions used the masculine gender. Condoms are mentioned. The word hombres was used eight times while mujer was never used. The booklet, published in Barcelona, was intended for national distribution.

How effective have campaigns related to and efforts to increase safe sex practices among lesbians been? A 2022 paper in AIDS and Behavior titled “HIV and STI Prevention Among Spanish Women Who have Sex with Women: Factors Associated with Dental Dam and Condom Use” found that only 4.7% in a sample of 327 women in Spain aged 16 to 60 who had sex with women to engage in cunninglus used a dental dam, while only 5.2% used a dental dam when practicing anilingus.  When these women had sex with women and engaged in vaginal penetration, 37.1% used a condom while 37.8% used a condom for anal penetration.[36]

A June 2017 study by Sara Diaz-Salazar de la Flor of women who had sex with women in Spain involving 168 women conducted in November 2016 found 78.6% of women in monogamous relationships did not use safe-sex practices and 3.5% always used them.  Women aged 41 to 50 were the ones most likely to use the barrier method as a form of safe sex compared to all other age cohorts. Women who love women in non-monogamous relationships were more likely to not use barrier rates with sex toys at 11.9% compared to 17.3% of monogamous women to not the barrier method with sex toys. It also looked at knowledge about safe sex methods. Within the barrier methods between MSM, it was asked about which they knew. 116 (68.2%) knew about the female condom, 91 (53.5%) the latex barrier, 52 (30.6%) gloves, 35 (20.6%) use a condom they knew. 116 (68.2%) knew about the female condom, 91 (53.5%) the latex barrier, 52 (30.6%) gloves, 35 (20.6%) use a condom open, 24 (14.1%) finger cots, 24 (14.1%) did not know any of the above 13 (7.6%) knew all and 3 (1.8%) knew others not reflected in the survey.

The lack of research on the efficacy of safe sex methods used by lesbians, coupled with a lack of institutional desire to specifically reference lesbians and LGTB organizations prioritizing prevent in other members of the collective means lesbians are not very aware of safe sex methods and do not practice them.  Coupled with issues with HIV statistics, it is hard to know what the impact of decisions to ignore a group repeatedly labeled high risk means when it comes to transmission of HIV / AIDS and other STIs has been and will be. Whatever it is, the pattern will likely continue.

LGTB HIV / AIDS activism

The arrival of AIDS in Spain caused a collapse in the collective, especially in Madrid and Barcelona because of its impact on the gay community and the homophobia confronting them.  During the early 1980s, discussion about AIDS / HIV often centered around gay men, creating a narrow window of visibility within broader society and defining these men exclusively around their sexual practices.  Societal focus of HIV and AIDS as a gay disease often rendered women, and lesbians in the collective in particular, as completely invisible and sexless.^[37]

It was in 1986, when around 40% of the hospital beds in Hospital Universitario 12 de Octubre were being used by HIV / AIDS patients, almost five years after AIDS was first confirmed as arriving in the country that activism around AIDS slowly began to build. This activism though was not from within the homosexual rights community that had achieved a number of successes in the past few years, including decriminalizing of homosexuality. The homosexual rights community of the 1980s wanted to avoid the stigma of being attached to AIDS and the discrimination faced by people with AIDS despite the homophobia AIDS was generating inside the country. The detachment also continued even as many gay men in Spain died from the disease, especially in cities like Sevilla. This pattern of detachment continued into the early 1990s.

Despite the resistance of some homosexual activists and in line with what was occurring in other countries, some of the fractured alliances between gays and lesbians began to heal in a number of larger cities across Spain as a result of the continuing AIDS crisis. This was felt locally in how some Pride events began to be organize. This was not always the case though in all places, and in many cases was confined only to specific HIV and AIDS activism. ^[38]

Some of the early initial activism related to AIDS came from lesbians, not gay men, who worked with anti-SIDA groups, groups that were generally coming out of pediatric and drug abuse circles at that time. Pride in 1986 was organized by CFLM and Grupo Anti-SIDA.  Their representative said in the ten years since Spain had become a democracy, very little had been to improve the lives of lesbians and gays.  The march denounced the discrimination suffered by homosexuals serving in the military.^[39]

COFLHEE held their thirty-seventh meeting in Madrid in September 1986.  By this time, gay rights groups, seeing their members starting to die from the infection and perceiving the government as doing little about it, started getting involved in campaigns to combat it. According to their publication related to the meeting in an article titled "Prevention, Prevention, Prevention," the organization expressed "its concern over the inertia and unproductiveness of the Central and autonomous Administrations with regard to AIDS prevention."  This meeting represented a shift change in the GLB movement as it related to gay men and AIDS, with prevention efforts overtaking fears around homophobia being generated as a result of AIDS and AIDS related media reporting.^[40]

While a handful of lesbians in Madrid began to join mixed homosexual spaces as part of mobilization efforts around combatting HIV and AIDS in the 1980s, lesbian feminists made a collective decision to more or less sit out that battle as they did not consider AIDS to be an issue that impacted women, and they did not work on efforts to prevent the transmission of sexually transmitted infections, including AIDS, between women. Focused on their own issues, often as a result of discrimination against them as a class because of their sex or their sexual orientation depending on which group they were dealing with, they remained largely unconcerned about HIV and AIDS until the second half of the 1990s. If lesbians contracted AIDS, the view was they could turn to Anti-AIDS Citizens' Committees. ^[41]

Lesbian artists and activists in the art community began to look at and exam HIV and AIDS in their work by the early 1990s.  This work came out of broader gynocriticism production occurring during that period, and was unaware of Anglo-Saxon feminist theory and practices preceding it and happening concurrently to it. Ya no me importa tu mirada, 1994 by Cabello / Carceller, artists who were founding members of LSD.   Lesbian art that tried to break Lacanian maxim that "the gaze of the other produces my identity by reflection, through it I know who I am and in that narcissistic game I constitute myself from the outside".  It was part of a movement among lesbian and homosexual artists more generally around the topic of HIV / AIDS about what the disease revealed about Spanish society, including heterosexuality as the default perspective and gender roles for women, and how AIDS revealed inequality between men and women, especially as it related to treatment related to the disease.^[42]

The model for and internal organization around homosexual rights activism in Madrid began to change in the late 1980s with the emergence of a new group, COGAM. COGAM was founded in the late 1980s following a meeting of Coordinadora de Frentes de Liberación Homosexual del Estado Español (COFLHEE) in 1985.[43]COGAM strived more towards moderation, and away from radical liberation philosophies characterized by a number of other homosexual rights activist groups in Madrid at the time. Their different political and activist approach would change how other activists in the city approached the AIDS epidemic.^[44]

The emergence of COGAM, the dissolution of CFLM, internal battles inside the feminist community around the lesbian issues all led to greater diversity of thought within the broader homosexual and LGTB rights activist community during the 1990s. Schools of thought emerged included what would become queer feminism, transsexuality as a political issue, sadomasochistism as a valid sexual option, transmaribollero anti-capitalism and lesbofeminism.  This impacted how the fight against and activism related AIDS and HIV was done. The types of activism included condom distribution, health campaigns, encouraging studies to better understand the level of HIV infection among male homosexuals.

Two groups stand out from this period in the 1990s when it came to the battle against AIDS and HIV in the region.  They were Lesbianas Sin Duda (LSD) and La Radical Gai, who were at the forefront. They would play key roles in turning the body into a dimension of space from which sexuality and gender would then be used to exercise resistance against the State.

Lesbianas Sin Dudas (LSD), founded in Lavapies in February 1993 from a network of friends, was a lesbian activist organization but not in the institutional sense. Instead of working from the inside, they worked in challenging political ideas in society. The women came from different backgrounds. Some had been active in homosexual rights activism during the 1980s, some came from feminist groups, and some came from left wing extra-parliamentary groups. The group sometimes said their acronym said for different things like Lesbianas Sin Dinero. Lesbianas Sin Duda was an artist collective founded in 1993 in the barrio of Lavapies in Madrid. Members included Estíbaliz Sadaba, Virginia Villaplana, Itziar Okariz, Azucena Vietes, Fefa Vila, Beatriz Preciado, Carmela García, María José Belbel, Marisa Maza, Liliana Couso Domínguez, Floy Krouchi, Katuxa Guede, Pilar Vázquez and Arantza Gaztañaga. They were identified as more explicitly queer than many of their contemporaries in their conceptual and theoretical approaches to art and activism. Lesbianas Sin Duda had their first exhibit in 1993 at a bar in Lavapiés. The photography exhibition was called es-cultura-lesbiana.^[45]

LSD continued to be active until around 1997. LSD, what members of the group called themselves, used the initialism to stand for a number of things, often depending on the audience they were addressing or the topic they were advocating relating to.  These included Lesbianas Sin Duda, Lesbianas Se Difunden, Lesbianas Sexo Diferente, Lesbianas Sin Destino, Lesbianas Sospechosas de Delirio, Lesbianas Sin Dios, Lesbianas Sin Dinero and Lesbianas Son Divinas.[46]

During 1993 and continuing into the next few years, LSD worked on drawing attention to the impact of HIV and AIDS on women and on lesbians through art. The group was one of the only ones in Spain to trying to actively draw attention to women and lesbians, and their needs as it related HIV and AIDS, both in treatment and in terms of health-related policies.LSD teamed up with a number of other organizations as part of these efforts, including ACT UP in France and the Madrid based homosexual rights group La Radical Gai. They held photography exhibits, designed posters and created fanzines inspired by Barbara Kruguer as part of these efforts. One of their goals was to stop allowing others in the broader AIDS and HIV activist community to represent lesbians and lesbian sexual activities, and to give lesbians their own voice in describing their sexual practices as it related to AIDS and HIV. ^[47]

In 1993, LSD demanded that the Spanish state abandon the traditional and reactionary approach to AIDS based on male sexuality, describing the government's actions as a ne sexual apartheid that regularly punishes sex it views as unnatural. They denounced the creation of legal and other forms of discriminations against gay and lesbian identities in relation to HIV / AIDS.  They denounced the special suffering by women with HIV / AIDS in a society that values responding strongly to HIV / AIDS with patriarchy and homophobia. They denounced the fundamental political exercise in response to the "AIDS panic" that re-institutionalized the historical oppression of lesbians and gays as "high risk". The denounced the situation of oppression of women who were labeled seropositive and highlighting the African nature of the virus.

Radical Gai and LSD held a die-in action at Puerta del Sol on 1 December 1993 to condemn the Spanish state's approach to fighting the HIV / AIDS epidemic.  The date was chosen because World Health Organization had established it as the World AIDS Day in 1988.  The group chanted slogans like, ", "Tu silencio es complicidad"[48]and "Menos sermones y más condones"[49]among others.  Their die-in was modeled after similar ones done by ACT UP.  Later that same day, the head of Plan Nacional contra el Sida, Carlos Artundo, resigned.[50]

On 1 December 1995, Radical Gai and LSD organized a protest in front of the Ministerio de Sanidad.  Members of the protest painted their hands red, doing this to symbolically say the ministry had blood on its hand, with signs at the protest echoing the same thing, “El Ministerio de Sanidad tiene las manos manchadas de sangre"[51].  A rainbow flag was present at the protest, only a year or two after it had first appeared in Madrid where uptake had been hesitant as it was viewed as an Anglo-Saxon import. [52]

La Radical Gai and Lesbianas Sin Dudas had some substantial obstacles in their activism, including from within the LGTB collective.  The biggest of these was the growth of pink capitalism, which encouraged men and women to be hopeful consumerists of LGTB culture and encouraged some level of indifference towards broader activism to improve the lives of members of the collective. This pushed both groups at times to challenge themselves, to try to make themselves more visible in public spaces so they could grab the attention of gays, lesbians and those involved in public health policy around AIDS.

The group Radical Morals emerged from the gay rights group La Radical Gai founded in Lavapiés in 1991.  Little information has been preserved related to the group.  What is known is they used irony in some of their posters to address issues around lesbians and AIDS/ HIV. Themes they made explicit through irony regarding the lack the inclusion of lesbians in literature on the prevention of AID/HIV during the 1990s were along the lines of lesbians do not fuck and cannot pass on the virus as a result, the media does not discuss lesbians getting AIDS/HIV, lesbians cannot enter hospitals and, anyway, lesbians do not exist.  These concepts were all found present in Spanish society at the time, even if they were not stated explicitly.[53]

A more common approach from LGTB groups and homosexual groups, though not stated explicitly, in the late 1980s and most of the 1990s was opposition to supporting lesbian sexual health and awareness to the risks lesbians faced in contracting HIV / AIDS because it was viewed as a distraction from the bigger issue of the high rate of male homosexuals contracting and dying from the virus.

The approach to lesbian sexual health, and specifically their risk for AIDS, was a problem. At the time when the AIDS epidemic rejuvenated many LGTB organizations in Madrid and nationally, most of that renewed interest came from gay men, with organizations seeing their membership increase exponentially by this group. This at times further pushed lesbian and transexual interests in these groups to the margins. Increased membership by gay men also sometimes resulted in fewer representations of women and women's sexual health in campaigns run by these organizations, with almost none mentioning the prevention of AIDS via vaginal prevention, cleaning of sex toys or using vaginal prophylactics.

Having been founded in the mid-1980s and taking an increasingly central place in organizing the homosexual rights movement including Pride, by the early 1990s, cracks were beginning to merge that saw groups begin to split off from COGAM. While lesbians were members in this period, they were largely relegated to the background with the vast majority being gay men. COGAM appeared unable and unwilling to act to combat the AIDS epidemic and its impact on gay men in the city. While COFLHEE split in 1991 over the liberation politics issue, La Radical Gai (LGR) also split from the COGAM that year over the AIDS issue.  Despite the reintegration of lesbians into mixed homosexual spaces like COGAM, this integration rarely carried over to concerns about lesbian sexual health and understanding lesbian sexual health. COGA collected HIV/AIDS related data in the mid-1990s, including in 1995. This data traditionally has been about gay men, though in later periods it included male sex workers and transwomen.

ACT UP had become one of the primary activist groups related to the fight against AIDS in Barcelona and Paris.  They were able to draw together different groups involved with AIDS related topics including patients, doctors and activists. In 1992, there were efforts to form an ACT UP Madrid.  Several organizational meetings were held at the behest of La Radical Gai to try to create it, but the lack of urgency and the fact that most people did not have AIDS or HIV meant they never got off the ground.^[54]

COGAM finally ran a campaign saying lesbians were not immune to AIDS in 1996, over a decade after their founding. Unlike their campaigns aimed at men, they did not use photographs of women but instead used ballpoint pen sketches. The advice focused on oral practices like cunnilingus and through penetrative practices using toys or fingers.

AIDS continued in the 2000s to be tied culturally into how society defined gay men and in its erasure of lesbians: gay men were still defined at times around their sexual activity and lesbian sex did not exist.[55]The issue of public sex caused tensions in the LGTB community. For many lesbians and some gays in Spain in the 2000s, public homosexual sex was viewed as a form of continued repression, requiring that their sexual activity take place in public urinals, sex clubs and next to sewers and trash bins.  They disagreed with voices of those gay men who saw it as liberating, as a counter to sexual repression.

Over the next two decades, general neglect and scant attention to lesbian and bisexual women’s sexual health needs by LGTB organizations generally continued, with no LGTB group stepping in to fill the void left by the dissolution of LSD and La Radical Gai. LGTB organizations in Madrid rarely intervened to support lesbians and bisexual women if they got HIV or to provide education aimed at them at comparable levels to other members of the collective. Some work was done in Barcelona by LGTB groups at the Centro Penitenciariode Mujeres de Barcelona aimed at lesbians and bisexual women but it was atypical for its time. As a result, lesbian and bisexual women in Madrid with HIV often found themselves lacking emotional support and a network of people to aid them.

NGOs in the homosexual movement including FELGTB, Fundación Triángulo, COLEGAS, the Gobierno de España, Arcopoli UPM-UCM, COGAM, CRISMHOM, GALEHI, HALEGATOS and RQTR participated in a campaign in 2008 to prevent and diagnoses STD and other infections in men who had sex with other men. Despite lesbians also being homosexuals, no similar campaigns were done by the homosexual movement and its NGOs in Spain.

LGBT activists who organized Pride in Madrid continued to have problems with how to address lesbian visibility. Visibility had already been lacking at Pride for over a decade in addition to lesbians in Spanish society always having less visibility because of patriarchy, which automatically made gay men and transsexuals more visible. Issues around visibility had become worse because of the AIDS crisis, and the AIDS crisis, and neither COGAM nor FELGTB felt the need to address this. The 2008 Festival Visible de Cultura Gay y Lésbica de Madrid, organized by COGAM and FELGTB, included an exhibition called La VIH en rose. Vivir con VIH at the Círculo de Bellas Artes. It looked at the impact of HIV in Chueca and other barrios in Madrid. Artists featured included Abajo Izquierdo, Arturo Bibang, Dani Duart, Rinaldo Hopf, Guillermo Martínez, Alex Mene, Esperanza Moreno, Ángel Pantoja, César Rojas, Silvia & Neus y David Trullo. It did not appear to reference lesbians. The organizers said they wanted to draw attention to, but the organizers also wanted to draw attention to HIV / AIDS. The exhibition on HIV / AIDS focused mostly on gay men. The experiences and contributions of lesbians during the worst of the 1990s was obscured, despite the critically important role that Lesbianas Sin Dudas played in drawing attention to this issue, including during Pride. This issue was repeated with VIHdeo+, a video art session, also part of El Festival Visible. It took place at Espacio Menosuno on Calle de La Palma, 28. The only artists involved were gay or bisexual men.

One of the big accomplishments of the decade was for the first time, a national health or LGBT organization specifically examined the risks of lesbians for catching AIDS or other STIs. The organization to do this was FELGTB in 2011. That year, the organization had the slogan “2011 en Positivo, + salud, + solidaridad” as part of their efforts to talk about the HIV / AIDS crisis in the LGBT community in Spain. They said one of the reasons for this was the disease primarily affected men who slept with other men, bisexual men, women transexuals and male sex workers. They also produced a report on the sexual health of lesbians, bisexual women and other women who had sex with women in order to assist LGBT organizations and activist across the country in assisting this group as there was an identified issued of inequality in care when it came to women in the LGBT community. Issues they identified among healthcare workers when dealing with women was they mistook women who had sex with women as lesbians, they assumed that lesbians and bisexual women had lower rates of STIs than heterosexual women, that sex practices between women do not constitute intercourse, an assumption that all women are automatically heterosexual which requires patients to out themselves to receive better information, and a lack of a specific profile for women who sleep with women to offer healthcare professionals to assess risks of STIs. For scientists studying women having sex with women, they frequently confuse identity with practice which means important information may be omitted, and they ignore risky sexual practices between women. For women who have sex with women, the information they receive is systematically assuming they have sex with men, assumes that even if they are lesbians they had sex with men at some point as some research indicates up to 80% of lesbians had had sex with men, and also confuse identity with practice as heterosexual identifying women who occasionally have sex with women do not find information about safe sex practices between women relevant.

Their review of existing research on lesbians found that heterosexual women and lesbians are both 10 to 20% likely to have an STI during their lifetime with Trichomonas vaginalis the most common STI reported at 6%, followed by HPV at 4.8%, Chlamydia at 4.6%, herpes at 3.3%, pelvic inflammatory disease at 2%, gonorrhea at 1.6%, syphilis at 0.3% and HIV at 0.1%. Almost all of this data was from research done in the United States. They also said that HIV / AIDS was exceedingly rare among lesbians, with no confirmed transmission cases between women having sex with women in the United States as of 2006. That was against a backdrop of US CDC data that said there were 7,381 cases of HIV among women who had sex with women, but they had other risk factors such as intravenous drug use, occasional sex with infected men or blood transfusions. Of those 7,381 cases, only 534 said they had sex exclusively with men, 486 had other risk factors for HIV while 48 did not and still contracted AIDS. While the US CDC said they had no data on transmission of cases of HIV between women, they did acknowledge that cases of transmission had been reported and the Atlanta office of the CDC published case studies about specific women who had contracted HIV after sex with other women.

Other data out of the United States shared by FELGTB said that women who had sex with women felt a lack of vulnerability to STIs and were more willing to engage in risky sexual practices than their heterosexual or bisexual counterparts. The higher the number of partners women had, the more likely women were to contract an STI. These in turn would filter down to women who only had one sexual partner. An Australian study cited by FELGTB found that 16.6% of self-identified heterosexual women had STIs, while 23.4% of self-identified lesbians had STIs and 37.9% of bisexual women had STIs. The authors attributed to the higher rates to the higher number of sexual partners had by lesbian and bisexual women, and that heterosexual women were more likely to use some form of birth control like a condom compared to lesbians.

FELGTB concluded that medical practitioners needed to be educated more on the topic, that heterocentrism and homophobia resulted in prejudice when it came to care of lesbians getting treatment for STIs, and that more specific training was needed to better identify profiles of lesbians and bisexual women likely to contract STIS. They also concluded there was a lack of political, academic and health system will to do more research specific to lesbian needs and to try to improve their specific sexual health, that there was a lack of systematic campaigns aimed at lesbians and bisexual women that left them more vulnerable. They estimated that based on global surveys, it seemed likely that between 10 and 20% of lesbians and bisexual women in Spain had an STI at some point in their life, and that for some STIs, women who have sex with women are more vulnerable than women who have sex with men. They also concluded that it is not true that women who have sex with women have a zero percent risk of contracting HIV / AIDS.

FELGTB denounced the ignorance and repression of research done into the STIs among lesbians, bisexual women and other women who have sex with women in Spain. They demanded greater media attention to this health issue for women and to not make these health issues invisible. They also requested greater involvement by universities and research training centers in studying sexual health of lesbians, bisexual women and other women who have sex with women in Spain.  They asked the government to reduce the price of access to preventative materials for HIV and other STIs such as condoms, lubricants, and latex dials, and to remove the VAT from these items. They asked that the feminist movement incorporate a gender perspective in their work spaces to better include the needs of lesbians, bisexual women and other women who have sex with women in order to empower these groups to improve their sexual health. They asked that government campaigns stop using a androcentrism and cishomonormatividad perspective in trying to reach out to LGBT communities when addressing sexual health. FELGTB also said that LGBT association needed to improve their political and technical training when it came to addressing the sexual health needs of cis women, and that LGBT associations include information on female sexual health and safe sex practices.

FELGTB finished off with specific advice for lesbians, bisexual women and other women who had sex with women. That included to enjoy their sexuality, to talk freely about their sexuality, to inform themselves about real and potential risks of contracting HIV and other STIs, and to encourage them to speak up inside the LGBT and feminist movement to make sure their voices were heard on the issue of their own sexual health.

FELGTB was not alone in addressing lesbian sexual health needs in 2011. Fundación Triángulo created a guide on the sexual health for women who have sex with women in 2011. This guide was updated in 2017. It was created by Grupo de Mujeres de Fundación Triángulo who were based at branches of Fundación Triángulo in Madrid, Coslada and San Fernando de Henares. The document was the first of its kind in the Comunidad de Madrid.

Grupo de Lesbianas y Acción Joven COGAM – AJC organized a workshop for women who had sex with women on 3 June 2011 at COGAM's office. The description of the event was, " Sexual health workshop for women who have sex with women. If you want to learn in a fun way, talk about safe sex and openly ask your questions, go for it, a gynecologist will answer all your questions."[56]

A June 2017 study by Sara Diaz-Salazar de la Flor of women who had sex with women in Spain involving 168 women conducted in November 2016 found most women, 92.9% believed STIs could be transmitted between women, 58.8% reported having access to information about STIs that occur between women, with most getting that information from the Internet or someone close to them.  Only 27.6% got it from an LGTB+ association while12.9% had been told by their doctors.

Lesbian ability to draw attention to HIV and AIDS risk inside LGTB groups like COGAM were further eroded in 2019 when Lesbianas de COGAM announced that they were officially inactive. This was reflected on the HIV webpage by COGAM, where the only women whose HIV risks were addressed were transwomen.  The imagery on the page involved transwomen or gay men.  The documents and programming was all generic or was aimed at gay men, men who have sex with men, male prostitutes, transwomen or senior LGTB people.

Fundación Triángulo in Coslada and San Fernando de Henares, working with Concejalía de Salud y Consumo del Ayuntamiento de Coslada and the Grupo de Mujeres de Triángulo Madrid, edited a guide called Guía de Salud Sexual para Mujeres que tienen Sexo con Mujeres in 2019.  This work was built on the 2011 "Stop SIDA" 2011 guide.  The guide said that women who had sex with women could get AIDS, but the chances were very low. They highlighted that it was very hard to get AIDS from penetration via fingers but that other STIs like hepatitis C could be transmitted this way.  They advised using latex gloves or using a dildo instead. The guide was the first of its kind to be developed in Madrid.

The COVID-19 pandemic brought few changes in the LGTB community. As it related to sexual health, lesbians, bisexual women and women who had sex with women in the pandemic period were largely ignored by LGTB organizations during their efforts to reduce HIV / AIDS, with almost all their resources on sexual health to gay men, transwomen and male sex workers. For example, FELGTB had a section on their website in 2021 dedicated to sexual health, with a section related to the sexual health needs of transwomen and male sex workers. There was no section dedicated to cis women, and their sexual health needs.

COGAM ran series of World AIDS Day events in Madrid in 2022.  These included a march from Ministerio de Sanidad to Museo Reina Sofía.  COGAM had a motto for this march of, "Sanidad, sin restricciones ni condiciones para todas las personas con VIH." There did not appear to be any specific lesbian mention though the banner had the colors of the rainbow on it. Grupo Jóvens de COGAM organized "Patrulla Condonera" on 26 November 2022 at Salon de actors de COGAM for HIV healthcare.  The title and imagery included condoms, which is a male centric approach to AIDS and HIV which excludes lesbians. A presentation titled, "Historias de sus VIHDAS", was made by Oswaldo H. Vegas Aru on 25 November 2022 at the Salón de actos de COGAM.  The image for the event featured a black woman taking a picture. Doctor Teresa Aldamiz, affiliated with the Unidad de Enfermedades Infecciosas del Hospital General Universitario Gregorio Marañón, hosted a presentation organized by COGAM, Proyecto+ TanGIBLe and the Dirección General de Igualidad de la Comunidad Madrid on 1 December 2020 on advanced in therapies used to treat HIV. This presentation appeared generic, and not specific to men or women, or any member of the collective.

Movimiento Marika Madrid emerged in Madrid in 2020 as a collection of gay men taking up the legacy of La Radical Gai from a transfeminist perspective, using a lot of the same imagery, iconography and wording that the group did posters in part of new movement by gay men to try to continue combat HIV / AIDS.  No similar group to LSD currently represent the needs of lesbian for sexual health and no groups that sometimes address these issues us lesbian explicit imagery, likely in part because bodies of lesbians had again become invisible in the contemporary political and queer environment.[57]

[1]This was a continual issue in writing this piece. Ten sources would mention the same events, draw the same conclusion and then, after it appeared there was a definitive consensus around a topic with all the primary sources identified, an eleventh paper would blow that issue open and make it hard to figure out how to integrate the multiple perspectives coming from AIDS activist groups, AIDS research groups, LGTB activities, lesbian activists and others with a vested interest in this topic.  At the same time, many writers had political or ideological objectives in their works. For example, LSD who are mentioned repeatedly in this document are claimed and disowned by both queer feminists and radical feminists in various documents.  To the extent that there is an intentional ideological perspective in this document, it is that lesbians are female homosexuals, some of whom may have had sex with penis people.

[2] (Vall d’Hebron University Hospital, 2021)

[3] English: First homosexual with “gay cancer” in Madrid.

[4] English: A new case of the immune deficiency syndrome in Madrid.

[5] (Alvarado Santiago, 2022; El País, 1983)

[6] (Europa Press, 1984)

[7] (EresVIHda, 2021)

[8] (EresVIHda, 2021)

[9] (EresVIHda, 2021; Vall d’Hebron University Hospital, 2021; Pérez-Elías, y otros, 2022)

[10] (Alvarez-Dardet, 1994)

[11] (Diario 16, 1993; CNB, 1993; AFP, 1993)

[12] (EresVIHda, 2021; Vall d’Hebron University Hospital, 2021)

[13] (Antena 3 Noticias, 2022)

[14] (United States Centers for Disease Control, 2006)

[15] The report is available at https://www.saludcastillayleon.es/en/enfermedades-problemas-salud/vih-sida-infecciones-transmision-sexual.files/2032510-Datos%20Espa%C3%B1a%20a%2030%20de%20junio%202021.pdf

[16] The report is available at https://www.isciii.es/QueHacemos/Servicios/VigilanciaSaludPublicaRENAVE/EnfermedadesTransmisibles/Documents/VIH/informes%20de%20vigilancia%20VIH%20y%20sida%20anteriores/Informe%20VIH_SIDA_2022_CCAA.pdf

[17] Lesbian is being used as a shorthand for women who have sex with women, a category that also includes bisexual women and straight identifying women who may have had sex with women. Heterosexual and straight women is being used similarly to mean women who have sex with men.

^[18] (Llamas & Vila, 1999)

[19] The number of deaths by sex peaked in different years, with 1995 being the peak year for men and 1996 being the peak year for women.

[20] Data regarding intravenous drug use among lesbians in Spain is also lacking.  A 2012 study in the United Kingdom (Ayuso, 2012) found gays, lesbians and bisexuals were seven times more likely than heterosexuals to use drugs, with 35% of those surveyed having done drugs in the past month compared to 5% of straight people surveyed. Homophobia and participating in festivals like Pride may have contributed to the higher numbers among this population. Lesbian specific data from Spain around drug use is hard to find, as this data is frequently collected and reported on with only references to gay men or transwomen as individual groups inside the collective.

[21] There was a total of 259 total cases of maternal transmission to newborns when male newborns were included.

[22] The study notes the women were spread geographically across Spain: 23 were from Madrid, 40 from Valencia, 22 from Castilla y Leon, 18 from País Vasco, 17 from Catalonia and 10 from Aragón.

[23] MSM is used several times throughout this document to refer to “Mujeres que tienen Sexo con Mujeres” or “Women who have sex with women” in English.  Lesbian or lesbian and bisexual women are also sometimes used as shorthand for this concept.

[24] (EresVIHda, 2021)

[25] (Hospital Universitario La Paz, 2018)

[26] (Casanova Colominas, Rodríguez Fernández, & Gómez García, 2013)

[27]This means men.  The other people who are not women are men.

[28](Molina, Polo, & Martínez, 2019; NIH’s Office of AIDS Research, 2022)

[29] (Llamas & Vila, 1999)

[30] (Alvarado Santiago, 2022)

[31] English: "You are nothing more than your sex."

[32] (Richters & Clayton, 2010; Lesbianas Sin Duda, 1993; Schulman, 2018)

[33] (Division of STD Prevention, 2021)

[34] (Lesbianas Sin Duda, 1994)

[35] (Archivo-T, 2017)

[36] (Gil Llario, Morell Mengual, García Barba, Nebot García, & Ballester Arnal, 2023)

^[37] (Villena Espinosa, 2020)

^[38] (Villena Espinosa, 2020)

^[39] (El País, 1986)

^[40] (Llamas & Vila, 1999)

[41] (Llamas & Vila, 1999)

^[42] (Rubio & Tejeda, 2012)

[43] By the early 1990s, lesbians were much more engaged with COGAM than they had been with other homosexual rights groups in the past as they once again found common ground on issues like securing social support services. Among the lesbians involved with COGAM around this time were Mili Hernández and Beatriz Gimeno Reinoso. Despite this, lesbian representation in the group never topped 20% and would be significantly less than male homosexuals and heterosexuals, often transgender people, by the 2010s. Gay men set and continued to set the organization’s political and health related priorities based on their own sex based needs.

[44] (Sanfeliu, 2007)

^[45] (Archivo T, 2022)

[46] (Alvarado Santiago, 2022)

[47] (Archivo T, 2022)

[48] English: Silence is complicity.

[49] English: Fewer sermons.  More condoms.

[50] (Alvarado Santiago, 2022)

[51] English: The Ministry of Health as blood stained hands.

[52] (Alvarado Santiago, 2022)

[53] (Alvarado Santiago, 2022; Archivo-T, 2017)

^[54] (Llamas & Vila, 1999)

[55] There were efforts to challenge this as monogamous same-sex relationships and attempts to make homosexual sexual practices on par with heterosexual were made increasingly visible through efforts to legalize same-sex marriage on both a local and national level. To a certain degree, the battle for marriage equality became more visible than the AIDS epidemic as a result.

[56] Spanish: Taller de salud sexual para mujeres que tienen sexo con mujeres. Si quieres aprender de un modo divertido, hablar de sexo seguro y plantear tus dudas sin tapujos, anímate, una ginecóloga resolverá todas tus dudas.

[57] (Alvarado Santiago, 2022)

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