1 00:00:00,760 --> 00:00:06,280 Speaker 1: Ola Latino USA listener, kbastaf, we are celebrating thirty years 2 00:00:06,320 --> 00:00:08,959 Speaker 1: on the ear. I mean it's huge three that anos, 3 00:00:09,480 --> 00:00:13,680 Speaker 1: and so we're celebrating with you because honestly, you, dear listener, 4 00:00:13,720 --> 00:00:14,560 Speaker 1: you made it happen. 5 00:00:15,040 --> 00:00:16,480 Speaker 2: So we want to hear from you. 6 00:00:17,000 --> 00:00:20,599 Speaker 1: What is an episode that you shared with someone else 7 00:00:20,640 --> 00:00:22,200 Speaker 1: You were like, oh my god, I just have to 8 00:00:22,720 --> 00:00:25,000 Speaker 1: and you sent it to your mom or your THEO 9 00:00:25,160 --> 00:00:28,000 Speaker 1: or your dea, your son, your daughter. Let us know. 10 00:00:28,200 --> 00:00:30,760 Speaker 1: Leave us a voicemail at six four six five seven 11 00:00:30,880 --> 00:00:33,560 Speaker 1: one one two two four. Again that's six four six 12 00:00:33,760 --> 00:00:36,800 Speaker 1: five seven one one two two four, and we might 13 00:00:36,960 --> 00:00:41,960 Speaker 1: just feature your call on an upcoming episode in Yes, 14 00:00:42,920 --> 00:00:46,040 Speaker 1: this is Latino USA, the Radio journal of News and 15 00:00:46,159 --> 00:00:49,479 Speaker 1: Kurtur Latino US six let Latino USA. 16 00:00:49,720 --> 00:00:53,720 Speaker 2: I'm Mariainojosa. We bring you stories that are underreported but 17 00:00:53,840 --> 00:00:56,560 Speaker 2: that mattered to you, overlooked by the rest of the media. 18 00:00:56,640 --> 00:00:58,920 Speaker 2: And while the country is struggling to deal with these, we. 19 00:00:58,960 --> 00:01:02,960 Speaker 1: Listen to the stories Black and Latino Studio United Latino Front, 20 00:01:03,200 --> 00:01:07,520 Speaker 1: a cultural renaissance organizing at the forefront of the movement. 21 00:01:08,240 --> 00:01:11,160 Speaker 2: I'm Maria Ino Josa, Nosebayan. 22 00:01:12,920 --> 00:01:16,120 Speaker 3: Late last year at Latino USA. We started planning special 23 00:01:16,160 --> 00:01:20,800 Speaker 3: episodes to mark the show's thirtieth anniversary, and we were 24 00:01:20,840 --> 00:01:25,600 Speaker 3: given this four hundred page archival document with three decades 25 00:01:26,040 --> 00:01:30,080 Speaker 3: of audio from the show. It was a lot, and 26 00:01:30,200 --> 00:01:35,760 Speaker 3: we were supposed to explore potential ideas. I decided to 27 00:01:35,840 --> 00:01:40,080 Speaker 3: type HIV in the search bar. I'm not sure why. 28 00:01:40,760 --> 00:01:44,280 Speaker 3: I guess I was curious. I was wondering how Latino 29 00:01:44,360 --> 00:01:49,120 Speaker 3: USA had covered the HIV eights epidemic. And for a 30 00:01:49,120 --> 00:01:51,960 Speaker 3: little bit of context, I'm thirty two years old and 31 00:01:52,000 --> 00:01:55,200 Speaker 3: I'm an immigrant from Venezuela, so I learned about the 32 00:01:55,240 --> 00:01:58,760 Speaker 3: height of the epidemic in the US much later after 33 00:01:58,920 --> 00:02:02,440 Speaker 3: it had already happened. And the image that I had 34 00:02:03,040 --> 00:02:07,000 Speaker 3: was mainly of white gay men who were getting very sick, 35 00:02:07,040 --> 00:02:08,640 Speaker 3: and they were protesting about it. 36 00:02:08,720 --> 00:02:12,000 Speaker 4: The US government is abandoning people with. 37 00:02:12,080 --> 00:02:14,440 Speaker 2: Age getting worse. 38 00:02:15,080 --> 00:02:18,160 Speaker 3: Topping a list of likely victims are male homosexuals who 39 00:02:18,200 --> 00:02:21,840 Speaker 3: have many partners and drug users who inject themselves with needle. 40 00:02:21,919 --> 00:02:25,440 Speaker 4: All over the country, homosexuals are reporting increased discrimination. 41 00:02:25,960 --> 00:02:29,920 Speaker 3: I expected Latino USA to have covered this differently, and 42 00:02:29,960 --> 00:02:37,200 Speaker 3: I wasn't wrong. In the archives, I found a segment 43 00:02:37,240 --> 00:02:40,000 Speaker 3: from nineteen ninety four about a nineteen year old Latino 44 00:02:40,160 --> 00:02:43,560 Speaker 3: from San Antonio. His name was Javier and he was 45 00:02:43,760 --> 00:02:48,480 Speaker 3: HIV positive, and Xavier was visiting classrooms to educate young 46 00:02:48,520 --> 00:02:50,840 Speaker 3: people like him about the disease. 47 00:02:51,200 --> 00:02:55,280 Speaker 2: I think maybe, like if I'd had someone come to 48 00:02:55,320 --> 00:02:58,520 Speaker 2: my school before I was infected and talked to me, 49 00:02:58,919 --> 00:03:00,000 Speaker 2: that probably would have changed. 50 00:03:01,400 --> 00:03:04,760 Speaker 3: I also found a very alarming report from our host 51 00:03:04,919 --> 00:03:08,080 Speaker 3: Maria J. Jos in Puerto Rico from nineteen ninety five. 52 00:03:08,919 --> 00:03:09,800 Speaker 2: Has changed. 53 00:03:10,120 --> 00:03:10,919 Speaker 5: That year, the. 54 00:03:11,040 --> 00:03:15,520 Speaker 3: Island actually had the highest rate of HIV infections in 55 00:03:15,560 --> 00:03:19,080 Speaker 3: the whole country, and Maria was there to focus on 56 00:03:19,120 --> 00:03:23,560 Speaker 3: the increasing number of women getting infected. I learned from 57 00:03:23,560 --> 00:03:26,200 Speaker 3: her report that sexism was a big part of the 58 00:03:26,280 --> 00:03:26,960 Speaker 3: problem there. 59 00:03:27,760 --> 00:03:30,680 Speaker 6: I used to tell him I would never forgive him 60 00:03:31,080 --> 00:03:32,400 Speaker 6: if he got me infected. 61 00:03:35,320 --> 00:03:39,920 Speaker 3: I kept digging in Latino USA's archives, and then I 62 00:03:40,080 --> 00:03:40,840 Speaker 3: found her. 63 00:03:42,240 --> 00:03:44,760 Speaker 5: Her name was Ilka Dania Payan. 64 00:03:45,640 --> 00:03:48,720 Speaker 7: Those who still believe that you can get AIDS from 65 00:03:48,720 --> 00:03:52,160 Speaker 7: a kiss or from a food place that exists today 66 00:03:52,360 --> 00:03:57,840 Speaker 7: sixteen years later. There is too much ignorance, too much discrimination, 67 00:03:59,160 --> 00:04:00,640 Speaker 7: too much in humanity. 68 00:04:01,720 --> 00:04:04,920 Speaker 3: The strength in her voice really stopped me in my tracks. 69 00:04:05,600 --> 00:04:08,040 Speaker 3: I was like, who's this fierce woman? 70 00:04:08,680 --> 00:04:12,080 Speaker 7: I want to outlive eights and I want all of 71 00:04:12,160 --> 00:04:14,200 Speaker 7: us to outlive a thank you. 72 00:04:23,720 --> 00:04:26,839 Speaker 3: After listening to Ilka in that speech in San Francisco 73 00:04:27,160 --> 00:04:30,680 Speaker 3: in October of nineteen ninety five, I just had to 74 00:04:30,720 --> 00:04:34,359 Speaker 3: know more about her. What else did Latino USA have 75 00:04:34,480 --> 00:04:38,000 Speaker 3: on Ilka Dania Payan, So I searched to see if 76 00:04:38,040 --> 00:04:41,440 Speaker 3: I found her again, and I did. 77 00:04:42,400 --> 00:04:47,040 Speaker 8: The famous actress from telenovelas, the lawyer who defended immigrants' rights, 78 00:04:47,480 --> 00:04:51,120 Speaker 8: and most recently, the most outspoken Latina on AIDS issues, 79 00:04:51,520 --> 00:04:55,279 Speaker 8: died on April sixth of AIDS. 80 00:04:55,320 --> 00:05:00,160 Speaker 3: Just months after delivering that powerful speech. Ilka was gone. 81 00:05:00,800 --> 00:05:02,280 Speaker 3: She was fifty three years old. 82 00:05:04,160 --> 00:05:06,920 Speaker 8: She told Latinas that there was one thing they could 83 00:05:07,000 --> 00:05:09,640 Speaker 8: do to try to save their own lives. Get an 84 00:05:09,640 --> 00:05:12,919 Speaker 8: AIDS test and insist that your partner do the same. 85 00:05:13,800 --> 00:05:17,120 Speaker 8: I followed her words. I know of many other Latinas 86 00:05:17,160 --> 00:05:21,040 Speaker 8: who got tested after they heard Ilga speak. Thanks to Ilga, 87 00:05:21,320 --> 00:05:23,080 Speaker 8: at least some things have changed. 88 00:05:27,200 --> 00:05:30,160 Speaker 3: I couldn't imagine how Ilka was able to face the 89 00:05:30,200 --> 00:05:33,880 Speaker 3: world with this force while she was battling the most 90 00:05:33,920 --> 00:05:39,359 Speaker 3: stigmatized and hopeless illness of her time. So I was 91 00:05:39,440 --> 00:05:44,160 Speaker 3: left wondering how did she become the most outspoken Latina 92 00:05:44,360 --> 00:05:45,279 Speaker 3: living with HIV? 93 00:05:46,440 --> 00:05:47,520 Speaker 5: What was her story? 94 00:05:48,279 --> 00:05:52,120 Speaker 3: And what would life look like for Ilka if she 95 00:05:52,160 --> 00:05:53,560 Speaker 3: were still around us today. 96 00:05:57,880 --> 00:06:02,200 Speaker 1: From Fudromidia and PRX, It's Latino USA. I'm Mariaino Posa 97 00:06:02,680 --> 00:06:07,320 Speaker 1: today the HIV age epidemic and women. A story of 98 00:06:07,440 --> 00:06:19,400 Speaker 1: two Latinas breaking stigma from yesterday and today. Latino USA 99 00:06:19,440 --> 00:06:23,720 Speaker 1: producer Patrisa Sulbran has the story and here she is. 100 00:06:26,560 --> 00:06:31,440 Speaker 3: Picture this. It's nineteen ninety three. We're twelve years into 101 00:06:31,440 --> 00:06:35,840 Speaker 3: the epidemic of HIV. Eights New York City is the 102 00:06:35,880 --> 00:06:41,240 Speaker 3: epicenter of infections. Per capita, more than forty six thousand 103 00:06:41,320 --> 00:06:44,000 Speaker 3: people have died in the city since the first case 104 00:06:44,120 --> 00:06:49,960 Speaker 3: was officially reported in black and Latino communities. Two major 105 00:06:50,040 --> 00:06:54,360 Speaker 3: public health crisis are colliding. The crack epidemic has already 106 00:06:54,400 --> 00:06:59,279 Speaker 3: separated families and ended lives, and the HIV virus is 107 00:06:59,320 --> 00:07:04,719 Speaker 3: attacking people immune systems with no proper treatment. More and 108 00:07:04,880 --> 00:07:08,760 Speaker 3: more people are developing AIDS, which is putting them at 109 00:07:08,760 --> 00:07:14,240 Speaker 3: a higher risk of dying. It's June nineteenth and the 110 00:07:14,280 --> 00:07:19,240 Speaker 3: summer is about to get real hot and sticky. Inside 111 00:07:19,360 --> 00:07:23,720 Speaker 3: the Cardinal Spellman AIDS pavilion at Saint Clair's Hospital in Manhattan, 112 00:07:24,400 --> 00:07:28,960 Speaker 3: most of the patients are Latinos and Latinas. One patient's 113 00:07:29,040 --> 00:07:36,880 Speaker 3: name is Ector Lavo. He dies on this day. Ector 114 00:07:36,920 --> 00:07:39,760 Speaker 3: Lavo doesn't need much of an introduction. He was a 115 00:07:39,800 --> 00:07:49,640 Speaker 3: salsa giant. He died from complications with AIDS, but his 116 00:07:49,760 --> 00:07:55,160 Speaker 3: obituaries don't mention aids. Larga and fermidad, a long illness, 117 00:07:55,360 --> 00:07:59,720 Speaker 3: said the Spanish newspaper. At bais cardiac arrest, The New 118 00:07:59,840 --> 00:08:03,640 Speaker 3: York Times reported, and this is not a story about him, 119 00:08:03,880 --> 00:08:07,320 Speaker 3: as I'm sure you realize by now, but his death 120 00:08:07,640 --> 00:08:13,840 Speaker 3: speaks of the times, times of secrecy and stigma. Speaking 121 00:08:13,960 --> 00:08:19,360 Speaker 3: up was unthinkable, But Ilka Tania Payan is about to 122 00:08:19,440 --> 00:08:21,280 Speaker 3: do just that. 123 00:08:23,680 --> 00:08:27,600 Speaker 1: Live and one person who has already learned her HIV 124 00:08:27,760 --> 00:08:30,240 Speaker 1: status is now using the information to help others. 125 00:08:30,520 --> 00:08:32,640 Speaker 5: She's speaking out with courage and conviction. 126 00:08:33,080 --> 00:08:35,800 Speaker 9: HIV virus was sexually transmitted to me by a young 127 00:08:35,880 --> 00:08:40,640 Speaker 9: Puerto Rican artist whom I respected and loved dearly. It 128 00:08:40,679 --> 00:08:42,400 Speaker 9: happens sometime between June of eighty one. 129 00:08:42,440 --> 00:08:48,400 Speaker 3: It's October fourteenth, we're still in nineteen ninety three. That morning, 130 00:08:49,040 --> 00:08:53,400 Speaker 3: Ilka appears at the Human Rights Commission office in Lower Manhattan. 131 00:08:54,240 --> 00:08:58,000 Speaker 3: She's a familiar face. Ilka's famous for her role in 132 00:08:58,040 --> 00:09:03,280 Speaker 3: at Telenovela on Telemundo. She's wearing a yellow blazer. Her 133 00:09:03,360 --> 00:09:07,640 Speaker 3: lips are painted in a red wine color. Her beautiful, 134 00:09:07,760 --> 00:09:12,160 Speaker 3: peppered and wavy hair is loose. Her hazel eyes are 135 00:09:12,200 --> 00:09:12,800 Speaker 3: wide open. 136 00:09:13,320 --> 00:09:16,800 Speaker 5: Ilka Tanya Payan live with her secret and now in 137 00:09:16,840 --> 00:09:17,920 Speaker 5: a very public way. 138 00:09:18,000 --> 00:09:20,800 Speaker 10: She was telling the world that she was HIV positive, 139 00:09:21,440 --> 00:09:22,600 Speaker 10: sometimes with humor. 140 00:09:23,120 --> 00:09:26,360 Speaker 9: Look at me, you know, I can't give a life. 141 00:09:28,240 --> 00:09:32,240 Speaker 3: Ka took the HIV test in nineteen eighty six. A 142 00:09:32,360 --> 00:09:35,640 Speaker 3: reporter asked her why she decided to wait seven years 143 00:09:35,679 --> 00:09:38,240 Speaker 3: to publicly disclose her diagnosis. 144 00:09:38,440 --> 00:09:42,360 Speaker 11: I think we all know the answer, don't we. You 145 00:09:42,440 --> 00:09:43,120 Speaker 11: know the answer. 146 00:09:44,080 --> 00:09:45,559 Speaker 2: It's fear of discrimination. 147 00:09:46,280 --> 00:09:50,600 Speaker 5: It is fear of rejection. Her sisters in the Dominican Republic. 148 00:09:51,000 --> 00:09:54,840 Speaker 3: Ka's home country had already heard reports about her illness. 149 00:09:55,120 --> 00:09:57,000 Speaker 9: I was afraid that once they found out what was 150 00:09:58,040 --> 00:10:00,760 Speaker 9: my condition, they would get up and in the beds 151 00:10:00,760 --> 00:10:02,439 Speaker 9: and spray the sheets. 152 00:10:03,559 --> 00:10:06,200 Speaker 11: Sat next Terminusian. 153 00:10:05,240 --> 00:10:07,480 Speaker 3: Says she will continue her work as a member of 154 00:10:07,520 --> 00:10:08,520 Speaker 3: the New York City. 155 00:10:08,360 --> 00:10:09,439 Speaker 2: Human Rights Commission. 156 00:10:12,559 --> 00:10:17,320 Speaker 3: The next year, nineteen ninety four, AIDS would become the 157 00:10:17,440 --> 00:10:22,840 Speaker 3: leading cause of death for all young Americans. Black people 158 00:10:23,200 --> 00:10:28,320 Speaker 3: and Latinos were the most impacted. It would take one 159 00:10:28,400 --> 00:10:32,200 Speaker 3: more year and tens of thousands of more lives lost 160 00:10:32,760 --> 00:10:37,280 Speaker 3: before the FDA finally approved an anti viral drug to 161 00:10:37,360 --> 00:10:41,600 Speaker 3: treat HIV. It was the first clear sign of hope 162 00:10:41,720 --> 00:10:47,000 Speaker 3: in fourteen long years for Ilka and many in her generation, 163 00:10:47,200 --> 00:10:49,559 Speaker 3: though it was already too late. 164 00:10:51,760 --> 00:10:59,400 Speaker 12: Me as you must already know, and your new bilingual teacher, 165 00:11:00,400 --> 00:11:02,760 Speaker 12: my name is miss Margarita. 166 00:11:02,840 --> 00:11:07,120 Speaker 3: And before the press conference, many people only knew Ilga 167 00:11:07,160 --> 00:11:10,800 Speaker 3: as an actress. She was a pioneer of the Spanish 168 00:11:10,840 --> 00:11:14,360 Speaker 3: speaking theater scene in New York. She also starred in 169 00:11:14,400 --> 00:11:18,160 Speaker 3: movies and TV shows, both in English and Spanish. 170 00:11:18,600 --> 00:11:20,200 Speaker 6: Pector you come. 171 00:11:20,120 --> 00:11:22,480 Speaker 9: Out of there right now and don't give these people 172 00:11:22,520 --> 00:11:27,320 Speaker 9: no more trouble. 173 00:11:29,080 --> 00:11:31,559 Speaker 3: That was only one side of who she was, though. 174 00:11:32,280 --> 00:11:36,880 Speaker 3: IgA was also a prominent advocate for HIV positive Latinos 175 00:11:37,000 --> 00:11:42,320 Speaker 3: and immigrants. She was an attorney. She created an important 176 00:11:42,400 --> 00:11:45,480 Speaker 3: legal clinic for immigrants in the mid eighties at the 177 00:11:45,559 --> 00:11:50,200 Speaker 3: Gay Men's Health Crisis Center, perhaps the most important ango 178 00:11:50,440 --> 00:11:52,480 Speaker 3: helping HIV patients back then. 179 00:11:54,559 --> 00:11:56,920 Speaker 9: I must say that I am not grateful to be here. 180 00:11:57,440 --> 00:11:59,840 Speaker 2: I am very angry, and I am in more. 181 00:12:01,520 --> 00:12:04,720 Speaker 3: She even went to the United Nations in December of 182 00:12:04,840 --> 00:12:06,959 Speaker 3: nineteen ninety three. 183 00:12:07,040 --> 00:12:09,840 Speaker 9: We don't need any more experts without HIV or aces, 184 00:12:09,840 --> 00:12:12,000 Speaker 9: and we don't need any more task forces. 185 00:12:12,880 --> 00:12:17,160 Speaker 3: She showed up wearing a stunning v neck black dress 186 00:12:17,200 --> 00:12:20,960 Speaker 3: with big shoulder pads and a large white and black 187 00:12:21,040 --> 00:12:23,680 Speaker 3: flower embroidered on one of the sides. 188 00:12:24,120 --> 00:12:26,559 Speaker 9: It work is not done to quickly remove the stigma 189 00:12:26,600 --> 00:12:30,400 Speaker 9: of eights while we still look good. It's going to 190 00:12:30,400 --> 00:12:33,720 Speaker 9: get harder for everyone to deal with it. It's pretty 191 00:12:33,800 --> 00:12:37,280 Speaker 9: ugly already. 192 00:12:37,360 --> 00:12:40,120 Speaker 3: I wanted to know more about Ika, but I wasn't 193 00:12:40,120 --> 00:12:49,400 Speaker 3: finding much. After her passing. There were no longer specials 194 00:12:49,440 --> 00:12:53,840 Speaker 3: about her on TV or documentaries on her life. I 195 00:12:53,880 --> 00:12:57,040 Speaker 3: got excited when I came across an article titled these 196 00:12:57,080 --> 00:13:01,400 Speaker 3: women are Forgotten HIV Warriors, but there was no mention 197 00:13:01,480 --> 00:13:11,600 Speaker 3: of her. Instead, the article featured Elizabeth Taylor and Princess Diana. 198 00:13:11,840 --> 00:13:15,920 Speaker 3: But then I found a person quoted in Ilka's obituary 199 00:13:16,160 --> 00:13:21,560 Speaker 3: in the New York Times. The article read quote a friend, 200 00:13:22,200 --> 00:13:27,040 Speaker 3: Carla Fine said the cause of death was AIDS. It 201 00:13:27,080 --> 00:13:32,120 Speaker 3: was just that, but it was something I started researching 202 00:13:32,520 --> 00:13:35,320 Speaker 3: and discovered that Carla Fine was a published author. 203 00:13:36,240 --> 00:13:36,839 Speaker 5: I looked her. 204 00:13:36,880 --> 00:13:41,280 Speaker 3: Up online and I sent her an email. Because of her, 205 00:13:41,880 --> 00:13:43,839 Speaker 3: I was going to be able to get to know 206 00:13:44,000 --> 00:13:46,840 Speaker 3: Ilka beyond the headlines. 207 00:13:50,559 --> 00:13:51,920 Speaker 2: Coming up on Latino USA. 208 00:13:52,200 --> 00:13:56,800 Speaker 1: Ilka seeks treatment, but soon she realizes that healthcare for 209 00:13:56,920 --> 00:14:01,160 Speaker 1: women with HIV is last on the list of priorities. 210 00:14:02,080 --> 00:14:17,280 Speaker 2: Stay with us, Yes, Olato is. 211 00:14:17,720 --> 00:14:21,400 Speaker 13: I'm Gini Montaro. I'm senior producer for Futuro Studios and 212 00:14:21,520 --> 00:14:23,800 Speaker 13: also moonlight occasionally for a Latino USA. 213 00:14:24,440 --> 00:14:25,040 Speaker 2: I've been with the. 214 00:14:25,040 --> 00:14:28,000 Speaker 13: Company since twenty sixteen, and I actually started as our 215 00:14:28,080 --> 00:14:32,160 Speaker 13: company's engineer. I love all things audio and sound design, 216 00:14:32,160 --> 00:14:34,760 Speaker 13: which means when I go to write stories, I'm always 217 00:14:34,760 --> 00:14:37,160 Speaker 13: thinking about fun ways to play with effects and music, 218 00:14:37,760 --> 00:14:39,720 Speaker 13: because how you hear a story. 219 00:14:39,520 --> 00:14:40,280 Speaker 2: Makes a difference. 220 00:14:41,320 --> 00:14:43,440 Speaker 13: The newsroom at Futuru was a breath of fresh air 221 00:14:43,560 --> 00:14:45,240 Speaker 13: from the news spaces that I was used. 222 00:14:45,080 --> 00:14:45,640 Speaker 5: To working in. 223 00:14:46,280 --> 00:14:48,080 Speaker 2: People like me with Feeaten. 224 00:14:47,840 --> 00:14:52,320 Speaker 13: Two worlds and two languages, it felt like home. Happy anniversary, 225 00:14:52,400 --> 00:14:56,560 Speaker 13: Latino Usa Gerrace Port and thank you listener for celebrating 226 00:14:56,600 --> 00:15:04,680 Speaker 13: with us. 227 00:15:07,040 --> 00:15:10,120 Speaker 1: Hey, we're back. And before the break, we met the 228 00:15:10,160 --> 00:15:14,640 Speaker 1: famous actress and activist Ilka Danya Bayan, who in nineteen 229 00:15:14,760 --> 00:15:19,600 Speaker 1: ninety three went public about being HIV positive. Later, she 230 00:15:19,640 --> 00:15:22,239 Speaker 1: went on to become one of the most outspoken Latinas 231 00:15:22,560 --> 00:15:26,360 Speaker 1: in the country and the world about HIV AIDS issues. 232 00:15:26,640 --> 00:15:29,280 Speaker 1: Here's producer Patricia Subran once. 233 00:15:29,120 --> 00:15:33,480 Speaker 5: Again, guys, and then I went down the rabbit hole. 234 00:15:33,520 --> 00:15:37,320 Speaker 3: Basically days after Carla Fine and I exchanged emails, she 235 00:15:37,440 --> 00:15:40,480 Speaker 3: welcomes me to her apartment in Chelsea on the West 236 00:15:40,560 --> 00:15:45,160 Speaker 3: side of Manhattan. She's now seventy seven years old. She 237 00:15:45,240 --> 00:15:47,640 Speaker 3: has a soothing voice and a petite figure. 238 00:15:48,440 --> 00:15:51,960 Speaker 14: You know it's late, but it's you know, she's rediscovered. 239 00:15:52,240 --> 00:15:55,960 Speaker 3: It's a breezy afternoon in May. Now I learned that 240 00:15:56,040 --> 00:15:59,880 Speaker 3: Carla and Ilka were really close, so much so that 241 00:16:00,320 --> 00:16:04,320 Speaker 3: Ilka specifically asked Carla to make sure that the press 242 00:16:04,400 --> 00:16:06,360 Speaker 3: reported she had died of AIDS. 243 00:16:06,680 --> 00:16:08,960 Speaker 5: She said she wanted that we're not alone today. 244 00:16:09,680 --> 00:16:10,640 Speaker 6: My kids are great. 245 00:16:12,000 --> 00:16:15,960 Speaker 3: Carla invited someone else to our meeting. It's Gigi, Ilka's 246 00:16:15,960 --> 00:16:21,200 Speaker 3: only daughter. I immediately recognize her from the press conference in 247 00:16:21,280 --> 00:16:25,479 Speaker 3: nineteen ninety three because she was standing right behind her mom. 248 00:16:25,840 --> 00:16:30,880 Speaker 3: She was only twenty nine back then. Now it's the 249 00:16:30,960 --> 00:16:35,280 Speaker 3: three of us sitting in Carla's cozy living room, surrounded 250 00:16:35,280 --> 00:16:39,040 Speaker 3: by books. For the next three hours, they share with 251 00:16:39,160 --> 00:16:43,720 Speaker 3: me their most treasured memories of Ilka, from her childhood 252 00:16:43,760 --> 00:16:46,920 Speaker 3: in the Dominican Republic to her last days in New 253 00:16:47,000 --> 00:16:51,600 Speaker 3: York City. But as it happens, memory doesn't work in 254 00:16:51,640 --> 00:16:56,840 Speaker 3: a straight line, so our conversation doesn't really follow a chronology. 255 00:16:58,080 --> 00:17:01,800 Speaker 3: Carla and Gigi start sharing caring anecdotes of Ilka when 256 00:17:01,840 --> 00:17:02,520 Speaker 3: she was sick. 257 00:17:03,480 --> 00:17:06,040 Speaker 5: Gig warns me, as if it were a bad thing, 258 00:17:06,600 --> 00:17:08,800 Speaker 5: that she'll probably cry a lot. 259 00:17:09,960 --> 00:17:15,520 Speaker 3: Surprisingly, we actually end up laughing a lot. Gig remembers 260 00:17:15,560 --> 00:17:18,720 Speaker 3: this one time when Ilka had a fever and they 261 00:17:18,760 --> 00:17:20,640 Speaker 3: had to call the ambulance. 262 00:17:20,880 --> 00:17:23,840 Speaker 6: And she's like up on the bed, sick as a dog, 263 00:17:24,119 --> 00:17:27,520 Speaker 6: weighs ninety pounds, soaking wet because she's so sick, and 264 00:17:27,560 --> 00:17:29,040 Speaker 6: she's got her leg up in the air and she's 265 00:17:29,040 --> 00:17:31,320 Speaker 6: trying to put on pantyhose, and then she's got the 266 00:17:31,320 --> 00:17:34,800 Speaker 6: lipstick over here, and I'm like Mitra muhe. I'm like, 267 00:17:35,160 --> 00:17:38,000 Speaker 6: what is wrong with you? You are going to the hospital. 268 00:17:38,040 --> 00:17:40,040 Speaker 6: We are putting you in an ambulance and she's like, 269 00:17:40,119 --> 00:17:42,200 Speaker 6: oh no, they cannot see me like this. 270 00:17:42,720 --> 00:17:46,119 Speaker 3: When they finally go downstairs, the EMT waiting by the 271 00:17:46,119 --> 00:17:50,639 Speaker 3: ambulance sees Ilka and tells her, oh, you're so beautiful today, 272 00:17:50,800 --> 00:17:51,400 Speaker 3: and she was like. 273 00:17:52,359 --> 00:17:54,960 Speaker 6: You know, I'll like see I still got it. And 274 00:17:55,000 --> 00:17:57,639 Speaker 6: I'm like, yep, she still got it. Wow, you know, 275 00:17:57,720 --> 00:17:58,760 Speaker 6: and he was lovely. 276 00:17:59,000 --> 00:18:02,120 Speaker 3: And there was this other time when Gigi had this 277 00:18:02,800 --> 00:18:07,000 Speaker 3: somber conversation with Ilka after she came out with her diagnosis. 278 00:18:07,560 --> 00:18:11,920 Speaker 3: Gigi asked her to please avoid becoming the AIDS poster girl. 279 00:18:12,840 --> 00:18:16,439 Speaker 3: Ika was like, do not worry, it's not going to happen. 280 00:18:17,119 --> 00:18:20,720 Speaker 3: But her activism, Gigi says, was so big that she 281 00:18:20,880 --> 00:18:21,840 Speaker 3: wasn't shying away. 282 00:18:22,760 --> 00:18:24,400 Speaker 5: So one day I'm down. 283 00:18:24,200 --> 00:18:25,720 Speaker 6: In the subway and I look and there's this huge 284 00:18:25,720 --> 00:18:28,159 Speaker 6: postress and I was like, you know, there were no 285 00:18:28,240 --> 00:18:29,800 Speaker 6: cell phones back then, So I get out of the 286 00:18:29,840 --> 00:18:31,720 Speaker 6: train and pick up the public phone and a caller. 287 00:18:31,800 --> 00:18:32,680 Speaker 2: I'm like, what. 288 00:18:32,840 --> 00:18:37,199 Speaker 6: Happens to not be the AIDS poster girl? I just 289 00:18:37,720 --> 00:18:41,760 Speaker 6: literally saw a poster of you as the AIDS poster girl. 290 00:18:50,760 --> 00:18:54,360 Speaker 14: Even in her most passionate she had a twinkle. There 291 00:18:54,400 --> 00:18:56,280 Speaker 14: was a twinkle to her kind of thing. There was 292 00:18:56,600 --> 00:19:00,520 Speaker 14: this way of talking that she just it. I mean, 293 00:19:00,520 --> 00:19:02,960 Speaker 14: I guess it's the definition of charisma, you know. 294 00:19:03,119 --> 00:19:05,000 Speaker 2: She just sparkled. 295 00:19:05,520 --> 00:19:09,360 Speaker 3: Carla and Ilka became friends in the early nineties, when 296 00:19:09,400 --> 00:19:12,560 Speaker 3: Ilka was about to turn fifty. It was a very 297 00:19:12,600 --> 00:19:16,919 Speaker 3: difficult time because Ika already knew about her diagnosis, but 298 00:19:17,000 --> 00:19:20,840 Speaker 3: it was also an exciting time. New York City had 299 00:19:20,880 --> 00:19:23,240 Speaker 3: elected its first black mayor. 300 00:19:23,040 --> 00:19:24,600 Speaker 2: The Honorable David N. 301 00:19:25,040 --> 00:19:30,560 Speaker 3: Lincoln's, and by then Ilka had become so prominent in 302 00:19:30,640 --> 00:19:34,840 Speaker 3: political and civic circles that she actually paused her acting 303 00:19:34,920 --> 00:19:38,200 Speaker 3: career to work for the Mayor's office as a Commissioner 304 00:19:38,280 --> 00:19:41,840 Speaker 3: on Human Rights. Carla was in charge of the press 305 00:19:41,880 --> 00:19:43,080 Speaker 3: office for the commission. 306 00:19:43,520 --> 00:19:46,800 Speaker 14: They started getting involved with anything that was discriminatory. 307 00:19:47,119 --> 00:19:48,640 Speaker 11: Every day there was a new cause. 308 00:19:48,880 --> 00:19:50,600 Speaker 6: She would see a fight happening, She'd be like, Oh, 309 00:19:50,680 --> 00:19:52,000 Speaker 6: let me go over there and get an that thing 310 00:19:52,040 --> 00:19:54,680 Speaker 6: over there, you know what I mean. And then the 311 00:19:54,720 --> 00:19:56,080 Speaker 6: next thing you knew she was leading. 312 00:19:56,119 --> 00:19:56,600 Speaker 11: The whole of the. 313 00:19:56,560 --> 00:20:02,439 Speaker 3: Town knew firsthand what it was like to be a 314 00:20:02,480 --> 00:20:06,320 Speaker 3: struggling New Yorker trying to make against meet. Before devoting 315 00:20:06,359 --> 00:20:10,880 Speaker 3: herself to theater and law and activism, she kept many 316 00:20:10,960 --> 00:20:14,359 Speaker 3: jobs in her life, including being a secretary and a 317 00:20:14,359 --> 00:20:18,440 Speaker 3: flight attendant. In the seventies, she lived in a tenement 318 00:20:18,600 --> 00:20:22,240 Speaker 3: with her daughter Gigi. These were tough times for women. 319 00:20:22,800 --> 00:20:26,600 Speaker 3: Congress was just starting to pass laws protecting women against 320 00:20:26,640 --> 00:20:31,760 Speaker 3: sex discrimination, but discrimination still happened. So when Ilka applied 321 00:20:31,760 --> 00:20:36,159 Speaker 3: for public housing, she was forced to lie in her application. 322 00:20:36,800 --> 00:20:39,800 Speaker 3: She said that her child was actually a boy so 323 00:20:39,840 --> 00:20:43,760 Speaker 3: they could be considered for a two bedroom apartment. Twenty 324 00:20:43,840 --> 00:20:47,600 Speaker 3: years later, in the nineties, some things hadn't changed much 325 00:20:47,640 --> 00:20:51,840 Speaker 3: for women, and the AIDS epidemic was making that clear. 326 00:20:54,960 --> 00:20:59,560 Speaker 3: There was widespread anecdotal evidence suggesting that women were getting 327 00:20:59,640 --> 00:21:05,840 Speaker 3: persie distant guide ncological infections that were correlated with HIV. However, 328 00:21:06,200 --> 00:21:10,600 Speaker 3: the CDC didn't include invasive cervical cancer in their AIDS 329 00:21:10,760 --> 00:21:17,479 Speaker 3: surveillance definition until nineteen ninety three, and yet women wouldn't 330 00:21:17,480 --> 00:21:21,240 Speaker 3: become part of clinical trials of HIV medication until the 331 00:21:21,280 --> 00:21:26,280 Speaker 3: mid nineties. Before that, they were often blocked, mostly out 332 00:21:26,320 --> 00:21:31,119 Speaker 3: of a fear in the medical world of exposing onborn children. 333 00:21:34,119 --> 00:21:37,919 Speaker 3: Ika was vocal about this. She was working closely with 334 00:21:38,200 --> 00:21:42,520 Speaker 3: mostly white activists who were opening prevention and treatment centers. 335 00:21:43,080 --> 00:21:45,679 Speaker 3: A few months before she died, she gave an interview 336 00:21:45,720 --> 00:21:49,240 Speaker 3: to Pause, that's a magazine that chronicles the lives of 337 00:21:49,280 --> 00:21:53,960 Speaker 3: people affected by HIV AIDS, and in that interview, Ika 338 00:21:54,000 --> 00:21:58,240 Speaker 3: said that this centers quote came out of white, gay, 339 00:21:58,359 --> 00:22:01,959 Speaker 3: middle class activism, because those are the people who know 340 00:22:02,000 --> 00:22:05,640 Speaker 3: how to function in the system, and there's nothing wrong 341 00:22:05,720 --> 00:22:09,120 Speaker 3: with that. If this had been a disease which started 342 00:22:09,160 --> 00:22:14,360 Speaker 3: with women, nothing would have been done. So when Eka 343 00:22:14,400 --> 00:22:17,840 Speaker 3: was diagnosed, Gigi says that their first thought was that 344 00:22:17,880 --> 00:22:20,680 Speaker 3: she needed to get on medication right away. 345 00:22:20,680 --> 00:22:23,719 Speaker 6: And that's when she started realizing, oh, they're not thinking 346 00:22:23,760 --> 00:22:26,600 Speaker 6: about me yet. So even if they do come up 347 00:22:26,640 --> 00:22:28,840 Speaker 6: with something, it's not going to be for me, it's 348 00:22:28,880 --> 00:22:32,119 Speaker 6: going to be for a gay white man who many 349 00:22:32,280 --> 00:22:34,960 Speaker 6: of in that community. She loved dearly. So it wasn't 350 00:22:35,200 --> 00:22:39,320 Speaker 6: us against them thing. It was like the priorities are skewed, 351 00:22:39,400 --> 00:22:40,360 Speaker 6: as they always have been. 352 00:22:40,920 --> 00:22:46,359 Speaker 3: Still today, almost three decades after IGA's death, HIV treatments 353 00:22:46,520 --> 00:22:51,840 Speaker 3: are not entirely available for sisgender women. PREP, one of 354 00:22:51,880 --> 00:22:56,160 Speaker 3: the most effective medications for HIV prevention, is an example 355 00:22:56,200 --> 00:22:59,480 Speaker 3: of that. PREP has been around for over ten years 356 00:23:00,040 --> 00:23:03,199 Speaker 3: and it's prescribed to people who are HIV negative but 357 00:23:03,320 --> 00:23:04,360 Speaker 3: at risk of infection. 358 00:23:05,240 --> 00:23:05,760 Speaker 5: But hear this. 359 00:23:05,880 --> 00:23:10,840 Speaker 3: Out of the three PREP medications available, one has never 360 00:23:10,880 --> 00:23:15,120 Speaker 3: been studied in people assigned female at birth. The CDC 361 00:23:15,440 --> 00:23:19,639 Speaker 3: warns it as critical to achieve equal PREP coverage, especially 362 00:23:19,680 --> 00:23:24,000 Speaker 3: when cisgender women account for almost twenty percent of all 363 00:23:24,119 --> 00:23:25,760 Speaker 3: new HIV diagnoses. 364 00:23:27,080 --> 00:23:30,480 Speaker 6: We were losing so many of our community. 365 00:23:30,760 --> 00:23:33,640 Speaker 3: Remember a lot of Ilka's friends were immigrants like her. 366 00:23:34,200 --> 00:23:37,719 Speaker 3: Some of them were exiled, they had no family members 367 00:23:37,760 --> 00:23:42,440 Speaker 3: in the US, some didn't speak English fluently. Others got 368 00:23:42,480 --> 00:23:47,040 Speaker 3: lost in the healthcare system. This is how Carla Ilka's 369 00:23:47,040 --> 00:23:48,680 Speaker 3: friend remembers it. 370 00:23:49,280 --> 00:23:53,359 Speaker 10: They were neglected by the government. Nothing was being done 371 00:23:53,560 --> 00:23:58,040 Speaker 10: because it was basically, we're dying. We're dying here, and 372 00:23:58,080 --> 00:24:00,600 Speaker 10: no one's doing anything because look at the population. 373 00:24:00,720 --> 00:24:03,679 Speaker 6: That's time and they were young between nineteen eighty and 374 00:24:03,720 --> 00:24:06,879 Speaker 6: eighty six, and she had already lost so so many people, 375 00:24:06,880 --> 00:24:10,560 Speaker 6: including her best friend mand Alita Martinez, right like yeah, 376 00:24:10,600 --> 00:24:14,119 Speaker 6: So for her, it was I'm losing my community, my 377 00:24:14,320 --> 00:24:16,800 Speaker 6: artists community, and I'm an artist. 378 00:24:18,359 --> 00:24:21,320 Speaker 5: Ilka spoke for them, she spoke for her. 379 00:24:22,560 --> 00:24:24,080 Speaker 9: I have brought to the New York City Human Rights 380 00:24:24,119 --> 00:24:26,480 Speaker 9: Commission the concern of immigrants, of women, of people with 381 00:24:26,560 --> 00:24:29,480 Speaker 9: ads and gays. I have made people laugh and cry 382 00:24:29,520 --> 00:24:31,720 Speaker 9: and sink from my stage and television work. I have 383 00:24:31,840 --> 00:24:34,359 Speaker 9: legally represented people who know very little about the so 384 00:24:34,440 --> 00:24:38,959 Speaker 9: called justice system and still believe in it. I don't 385 00:24:39,160 --> 00:24:43,480 Speaker 9: deserve to be ignored by governments. So I am using 386 00:24:43,480 --> 00:24:46,320 Speaker 9: this forum to demand that governments and the powerful with 387 00:24:46,440 --> 00:24:49,720 Speaker 9: the money get their act together in time. Go ahead, 388 00:24:50,000 --> 00:24:56,320 Speaker 9: United Nations and governments of the world act now on 389 00:24:56,400 --> 00:25:00,960 Speaker 9: these issues, because tomorrow is too late. Time to act 390 00:25:01,160 --> 00:25:06,080 Speaker 9: was yesterday. 391 00:25:19,400 --> 00:25:21,919 Speaker 3: It's a Saturday morning in May, and I've crossed the 392 00:25:21,960 --> 00:25:25,680 Speaker 3: Lincoln Tunnel to visit Gigi, Ilga's daughter, at her house 393 00:25:25,680 --> 00:25:29,480 Speaker 3: in Jersey City. The last time I saw Gigi, she 394 00:25:29,840 --> 00:25:33,400 Speaker 3: and Carla told me stories about IgA and how resilient 395 00:25:33,480 --> 00:25:36,240 Speaker 3: she was when she was ill. Now I want to 396 00:25:36,280 --> 00:25:39,920 Speaker 3: know more about Ika's origins, and Gigi promised to look 397 00:25:39,960 --> 00:25:47,080 Speaker 3: through some boxes of photos and letters with me. Okay, 398 00:25:47,280 --> 00:25:50,520 Speaker 3: gg takes me to the basement, so we start going 399 00:25:50,520 --> 00:25:53,200 Speaker 3: down the stairs and all of a sudden, I freeze. 400 00:25:55,119 --> 00:25:58,399 Speaker 3: The poster of Ika that Gigi saw in the New 401 00:25:58,480 --> 00:26:02,000 Speaker 3: York City subway thirty years ago is right there hanging 402 00:26:02,040 --> 00:26:04,719 Speaker 3: on the wall. It's a black and white photo of 403 00:26:04,800 --> 00:26:09,439 Speaker 3: Ilka's face. She's smirking and looks defiant. I feel like 404 00:26:09,480 --> 00:26:12,919 Speaker 3: she's looking at me with her hazel eyes. There's a 405 00:26:12,960 --> 00:26:16,240 Speaker 3: line on top of the poster that says, quote, I'm 406 00:26:16,440 --> 00:26:21,800 Speaker 3: HIV positive. I hope to meet more angels. We get 407 00:26:21,840 --> 00:26:24,680 Speaker 3: downstairs and Gigi starts pooling dozens. 408 00:26:24,320 --> 00:26:25,840 Speaker 5: Of photos out of the boxes. 409 00:26:26,680 --> 00:26:29,960 Speaker 6: Yeah, but she's over here in the corner. This is 410 00:26:30,000 --> 00:26:33,160 Speaker 6: one of the Premiu's assay events. 411 00:26:33,400 --> 00:26:34,040 Speaker 2: So she's here. 412 00:26:34,040 --> 00:26:37,280 Speaker 6: This is the seventies, looking very much like Arita Hayworth. 413 00:26:38,240 --> 00:26:41,760 Speaker 6: You know, she was very fabulous and tall. 414 00:26:42,000 --> 00:26:44,520 Speaker 2: Yes, she was tall. She's like five to seven. 415 00:26:44,920 --> 00:26:48,480 Speaker 5: Wow, she looks gorgeous. 416 00:26:48,480 --> 00:26:51,720 Speaker 3: Here there's a photo of Ilka standing next to the 417 00:26:51,880 --> 00:26:56,360 Speaker 3: legendary Puerto Rican actor Raoul Julia. Turns out they were 418 00:26:56,400 --> 00:26:59,920 Speaker 3: friends and they were also colleagues. They were both cast 419 00:27:00,119 --> 00:27:03,920 Speaker 3: for the HBO movie Florida Straits in nineteen eighty six, 420 00:27:04,400 --> 00:27:07,040 Speaker 3: the same year that Ika was diagnosed with HIV. 421 00:27:20,280 --> 00:27:22,400 Speaker 6: I'm just trying to find some of the other things here. 422 00:27:22,600 --> 00:27:26,119 Speaker 5: Gigi also shows me more personal photos. 423 00:27:25,520 --> 00:27:28,359 Speaker 6: And these are This is her with her sisters. This 424 00:27:28,400 --> 00:27:31,240 Speaker 6: is me with my mom and her brothers on a 425 00:27:31,280 --> 00:27:36,320 Speaker 6: trip to the Dominican Republic in La rom Mamosaveraci. This 426 00:27:36,359 --> 00:27:40,479 Speaker 6: is her with Hilberto in Puerto Rico, who she married 427 00:27:40,960 --> 00:27:44,000 Speaker 6: when I was eighteen. This is so tiny, but this 428 00:27:44,160 --> 00:27:46,720 Speaker 6: is my mom and my dad at their wedding. I 429 00:27:46,800 --> 00:27:50,119 Speaker 6: kept this photo because I think I look like her 430 00:27:50,200 --> 00:27:55,320 Speaker 6: in this photo. This was her favorite houseware style. Even 431 00:27:55,359 --> 00:28:03,040 Speaker 6: in the house, she was fabulous. This is my mom's father. 432 00:28:04,160 --> 00:28:06,200 Speaker 6: My mom's mother died in childbirth. 433 00:28:06,240 --> 00:28:10,080 Speaker 3: After her mother died during childbirth in the Dominican Republic 434 00:28:10,320 --> 00:28:14,240 Speaker 3: in nineteen forty five, Ika was raised by her grandmother, 435 00:28:15,080 --> 00:28:21,960 Speaker 3: who sold lottery, tickets and gasoline to get by. Ilka 436 00:28:22,000 --> 00:28:24,760 Speaker 3: wrote in a collection of essays that she would spend 437 00:28:24,800 --> 00:28:29,560 Speaker 3: the summers with her father, his nine other daughters, his wife, 438 00:28:29,800 --> 00:28:33,359 Speaker 3: and his mistress. She said quote, we lived in a 439 00:28:33,400 --> 00:28:40,240 Speaker 3: world of women, but not a woman's world. When at thirteen, 440 00:28:40,480 --> 00:28:42,800 Speaker 3: she and her sisters were sent to New York City 441 00:28:43,000 --> 00:28:45,800 Speaker 3: to live with an aunt and uncle. They settled in 442 00:28:45,920 --> 00:28:50,040 Speaker 3: Washington Heights. This was way before the area became the 443 00:28:50,040 --> 00:28:54,040 Speaker 3: home of most Dominicans in the city. Ika had been 444 00:28:54,080 --> 00:28:56,800 Speaker 3: living in New York for a year when she began 445 00:28:56,960 --> 00:28:59,480 Speaker 3: showing romantic interest in boys. 446 00:29:00,200 --> 00:29:01,800 Speaker 5: She wrote that her. 447 00:29:01,680 --> 00:29:05,280 Speaker 3: Uncle suggested that she got used to drinking liquor so 448 00:29:05,440 --> 00:29:08,040 Speaker 3: no men would get her drunk and try to seduce 449 00:29:08,080 --> 00:29:09,280 Speaker 3: her without her consent. 450 00:29:11,480 --> 00:29:14,720 Speaker 5: She wrote, quote that was. 451 00:29:14,640 --> 00:29:18,240 Speaker 3: The only form of sex education I received. There was 452 00:29:18,280 --> 00:29:22,200 Speaker 3: no discussion of contraception, either in school or at home. 453 00:29:23,080 --> 00:29:25,480 Speaker 3: Although there was a great deal of talk of the 454 00:29:25,480 --> 00:29:30,600 Speaker 3: holiness of virginity and marriage, the condom as word or 455 00:29:30,640 --> 00:29:39,640 Speaker 3: object was taboo, and education, of course, was discouraged about this. 456 00:29:39,960 --> 00:29:44,520 Speaker 3: Ilka said, quote, my teacher and uncle urged me to 457 00:29:44,680 --> 00:29:50,240 Speaker 3: choose as secretarial rather than an academic or general diploma, since, 458 00:29:50,720 --> 00:29:54,320 Speaker 3: as I was reminded, I was a Spanish girl whose 459 00:29:54,360 --> 00:29:58,720 Speaker 3: family needed my financial help, and who would eventually get 460 00:29:58,760 --> 00:29:59,720 Speaker 3: married anyway. 461 00:30:00,720 --> 00:30:01,800 Speaker 5: And that's what happened. 462 00:30:02,400 --> 00:30:06,200 Speaker 3: By twenty one, Ilka was already married and about to 463 00:30:06,240 --> 00:30:07,920 Speaker 3: give birth to Gigi. 464 00:30:07,600 --> 00:30:09,840 Speaker 6: And then she completely went kind of what her family 465 00:30:10,120 --> 00:30:11,240 Speaker 6: considers off the rails. 466 00:30:11,480 --> 00:30:15,240 Speaker 3: Ika married a wealthy man in the Dominican Republic, but 467 00:30:15,320 --> 00:30:18,680 Speaker 3: she soon realized that she didn't want that life, so 468 00:30:18,720 --> 00:30:21,880 Speaker 3: she separated and went back to New York City when 469 00:30:21,880 --> 00:30:25,200 Speaker 3: she was eight months pregnant. For the next eighteen years, 470 00:30:25,560 --> 00:30:30,480 Speaker 3: she'd support her daughter, sisters, and grandmother working as a secretary. 471 00:30:31,440 --> 00:30:39,760 Speaker 3: On the side, she'd fall in love with acting. Fast 472 00:30:39,800 --> 00:30:44,040 Speaker 3: forward to nineteen seventy six. Ika auditions for a TV 473 00:30:44,200 --> 00:30:47,680 Speaker 3: pilot and gets the part. So, with just a few 474 00:30:47,680 --> 00:30:50,040 Speaker 3: bags and little money, off she goes. 475 00:30:56,080 --> 00:30:59,360 Speaker 6: We were up on this tiny, little one bedroom apartment. 476 00:30:59,600 --> 00:31:00,600 Speaker 6: It was like a box. 477 00:31:01,120 --> 00:31:04,520 Speaker 3: Ika arrived in Hollywood to make it in the movie industry, 478 00:31:05,720 --> 00:31:08,520 Speaker 3: But there was one thing that was actually more important 479 00:31:08,560 --> 00:31:12,320 Speaker 3: to her than that, something she had long been denied. 480 00:31:13,360 --> 00:31:17,560 Speaker 6: Education was really important for her. You must get good grades, 481 00:31:17,600 --> 00:31:21,600 Speaker 6: you must be educated. You must learn as much as 482 00:31:21,640 --> 00:31:25,719 Speaker 6: you can. Be curious, right, ask questions. 483 00:31:26,160 --> 00:31:29,720 Speaker 3: I can imagine Ika saying those words to herself when 484 00:31:29,720 --> 00:31:32,560 Speaker 3: she stepped foot at the People's College of Law in 485 00:31:32,640 --> 00:31:38,000 Speaker 3: downtown Los Angeles. The college was an unaccredited school training 486 00:31:38,120 --> 00:31:40,440 Speaker 3: lawyers from underserved communities. 487 00:31:40,720 --> 00:31:43,600 Speaker 6: I remember her studying for the bar. She was stressed, 488 00:31:43,680 --> 00:31:47,840 Speaker 6: she was studying, and she passed it the first time 489 00:31:47,880 --> 00:31:49,720 Speaker 6: out which is very hard to do. 490 00:31:51,080 --> 00:31:53,760 Speaker 3: After getting her law degree, Ika went back to New 491 00:31:53,840 --> 00:31:57,560 Speaker 3: York City in nineteen eighty one. That same year, she 492 00:31:57,640 --> 00:32:00,520 Speaker 3: had a romantic relationship with a Puerto Rican art artists. 493 00:32:00,920 --> 00:32:05,280 Speaker 3: He was using injectable drugs. Ilka didn't know it, but 494 00:32:05,400 --> 00:32:11,080 Speaker 3: he transmitted HIV to her. Life went on for Ilga. 495 00:32:11,760 --> 00:32:14,920 Speaker 3: In the following years. She opened a law clinic and 496 00:32:14,960 --> 00:32:20,040 Speaker 3: represented Salvadorians who were seeking amnesty and Haitian immigrants, too 497 00:32:20,640 --> 00:32:26,040 Speaker 3: many of them, by the way, infected with HIV. Meanwhile, 498 00:32:26,480 --> 00:32:30,280 Speaker 3: over two thousand people had died of complications with AIDS 499 00:32:30,280 --> 00:32:35,080 Speaker 3: in the country. By nineteen eighty four, that number more 500 00:32:35,120 --> 00:32:39,040 Speaker 3: than doubled, and that same year, the Secretary of Health 501 00:32:39,080 --> 00:32:42,600 Speaker 3: and Human Services said that an AIDS vaccine was going 502 00:32:42,640 --> 00:32:46,120 Speaker 3: to be available within the next two years, and of 503 00:32:46,160 --> 00:32:51,520 Speaker 3: course we know that didn't happen. Instead, two years later, 504 00:32:52,000 --> 00:32:54,600 Speaker 3: Ika had already lost two of her best friends to 505 00:32:54,640 --> 00:32:58,040 Speaker 3: AIDS and something told her that she should get tested 506 00:32:58,080 --> 00:33:04,960 Speaker 3: to In the same nineteen ninety five interview for Pause 507 00:33:05,040 --> 00:33:09,120 Speaker 3: magazine that I mentioned before it got described the moment 508 00:33:09,280 --> 00:33:14,560 Speaker 3: she got the results. Quote the doctor called me and 509 00:33:14,600 --> 00:33:17,239 Speaker 3: he wouldn't tell me the results over the phone, so 510 00:33:17,320 --> 00:33:21,440 Speaker 3: I knew. He told me you have five years to live, 511 00:33:22,080 --> 00:33:29,520 Speaker 3: relax and make your will. There was no counseling, no intervention, nothing. 512 00:33:30,880 --> 00:33:32,480 Speaker 3: I don't know how I got home. 513 00:33:33,520 --> 00:33:36,560 Speaker 6: It was one thing to advocate for the people she 514 00:33:36,600 --> 00:33:38,320 Speaker 6: loved and she was losing, and to want to take 515 00:33:38,320 --> 00:33:40,760 Speaker 6: care of them. But then it was for one thing 516 00:33:40,800 --> 00:33:47,520 Speaker 6: for her to become a person with hib They didn't 517 00:33:47,600 --> 00:33:52,200 Speaker 6: understand transmission. So would someone want to be on a 518 00:33:52,240 --> 00:33:54,000 Speaker 6: stage with her sweating under lights? 519 00:33:55,080 --> 00:33:56,920 Speaker 2: Right? 520 00:33:58,240 --> 00:34:06,480 Speaker 6: The Rayah aspect of it, Nobody wanted nobody. 521 00:34:07,760 --> 00:34:12,560 Speaker 3: Jigi, in her late twenties, was also hurting. She remembers 522 00:34:12,600 --> 00:34:15,960 Speaker 3: that they had a huge fight about Ilka's decision to 523 00:34:16,040 --> 00:34:17,720 Speaker 3: go public with her diagnosis. 524 00:34:18,000 --> 00:34:22,960 Speaker 6: I did not want her to do that. Oh, I 525 00:34:23,000 --> 00:34:25,200 Speaker 6: did not want her to do it. My fear is 526 00:34:25,200 --> 00:34:29,640 Speaker 6: not the stigma. My fear is your swift and imminent death. 527 00:34:31,080 --> 00:34:35,160 Speaker 6: I took this position of superstition. I took this position 528 00:34:35,239 --> 00:34:39,240 Speaker 6: of if you give it credit, if you give it life, 529 00:34:39,280 --> 00:34:42,600 Speaker 6: if you tell it that it's here, it's going to 530 00:34:42,680 --> 00:34:45,920 Speaker 6: come for you. And I don't want to come for you. 531 00:34:47,440 --> 00:34:51,960 Speaker 6: I like it the way it is now. If you 532 00:34:52,080 --> 00:34:54,600 Speaker 6: had it this long and you were Okay, this long 533 00:34:55,440 --> 00:34:58,319 Speaker 6: and you start talking about it. Now it's coming for 534 00:34:58,400 --> 00:35:02,160 Speaker 6: you and you will die, And that she did three 535 00:35:02,200 --> 00:35:02,680 Speaker 6: years later. 536 00:35:06,040 --> 00:35:08,719 Speaker 3: I get why Gigi has kept her mother's things in 537 00:35:08,760 --> 00:35:09,840 Speaker 3: these boxes. 538 00:35:09,440 --> 00:35:10,880 Speaker 5: For many years. 539 00:35:11,560 --> 00:35:15,520 Speaker 3: Opening each box is unlocking feelings she's been dealing with 540 00:35:15,600 --> 00:35:21,040 Speaker 3: for decades. Most of all, the boxes are a reminder 541 00:35:21,120 --> 00:35:22,919 Speaker 3: that Ilka is no longer here. 542 00:35:23,920 --> 00:35:26,640 Speaker 6: There is a part of me that is still angry, 543 00:35:27,600 --> 00:35:33,239 Speaker 6: and there is a part of me that maybe what's 544 00:35:33,239 --> 00:35:35,320 Speaker 6: the word I'm looking for, maybe in a temper tentrum 545 00:35:35,400 --> 00:35:38,640 Speaker 6: kind of way, says and I want no part of it, 546 00:35:38,680 --> 00:35:40,320 Speaker 6: and I'm not going to do it. And if somebody 547 00:35:40,320 --> 00:35:42,160 Speaker 6: wants to keep her alive and do all this, you 548 00:35:42,320 --> 00:35:45,480 Speaker 6: do it. I wanted a mom. I wanted grandmother from 549 00:35:45,480 --> 00:35:52,200 Speaker 6: my kids. I wanted stories for them about their crazy grandma. 550 00:35:53,719 --> 00:35:58,880 Speaker 6: I didn't want this. Yes, she was amazing, She was amazing, 551 00:35:59,800 --> 00:36:02,279 Speaker 6: but her being amazing also took her away from me. 552 00:36:05,040 --> 00:36:09,319 Speaker 3: Ilga was amazing at her sickest. She still put on 553 00:36:09,360 --> 00:36:12,520 Speaker 3: her heels and her bright colored outfits to go to 554 00:36:12,560 --> 00:36:15,840 Speaker 3: her niece's wedding and one of her best friend's birthday parties. 555 00:36:16,160 --> 00:36:19,480 Speaker 6: She didn't fighte all my friends all her friends, thirty people, 556 00:36:19,560 --> 00:36:22,760 Speaker 6: forty people inside her apartment. You know, before she died, 557 00:36:22,840 --> 00:36:25,360 Speaker 6: she had a party and she looked at scene like 558 00:36:25,400 --> 00:36:27,359 Speaker 6: she was eighty three, even though she was fifty three, 559 00:36:28,040 --> 00:36:29,920 Speaker 6: and she had a party, and there's all these pictures 560 00:36:29,920 --> 00:36:31,239 Speaker 6: of her, and they're devastating. 561 00:36:31,840 --> 00:36:34,960 Speaker 3: Ilkad would come in and out of the eights pavilion 562 00:36:35,120 --> 00:36:39,760 Speaker 3: at Saint Clair's Hospital, the same hospital where salsa legend 563 00:36:39,800 --> 00:36:44,560 Speaker 3: Ector Lavo died. She would fight different kinds of infections 564 00:36:44,640 --> 00:36:48,320 Speaker 3: and pneumonia. She would spend her last Christmas in Puerto 565 00:36:48,400 --> 00:36:51,960 Speaker 3: Rico and grudgingly returned to the cold in New York City. 566 00:36:53,360 --> 00:36:57,600 Speaker 3: On April sixth, nineteen ninety six, Ilga died surrounded by 567 00:36:57,640 --> 00:37:02,160 Speaker 3: loved ones in her home. She was forty three when 568 00:37:02,200 --> 00:37:04,759 Speaker 3: the doctor told her that she had only five more 569 00:37:04,840 --> 00:37:05,520 Speaker 3: years to live. 570 00:37:05,600 --> 00:37:10,080 Speaker 5: In nineteen eighty six. She lived double that time. 571 00:37:15,120 --> 00:37:16,440 Speaker 14: That's her fabulousness. 572 00:37:16,760 --> 00:37:18,440 Speaker 5: Gig takes me back upstairs. 573 00:37:19,640 --> 00:37:22,000 Speaker 3: She shares that at some point in her life she 574 00:37:22,120 --> 00:37:25,239 Speaker 3: was a professional singer and had her own band, and 575 00:37:25,280 --> 00:37:29,640 Speaker 3: that after losing her mother, she performed this song at 576 00:37:29,640 --> 00:37:30,400 Speaker 3: her memorial. 577 00:37:43,280 --> 00:37:45,440 Speaker 5: I was your morning stuff. 578 00:37:46,520 --> 00:37:50,520 Speaker 6: You help me that I watched you grow, You struggled 579 00:37:50,680 --> 00:37:52,440 Speaker 6: with my sad hands. 580 00:37:52,840 --> 00:37:55,120 Speaker 5: It was an no time to let. 581 00:37:55,040 --> 00:37:55,480 Speaker 8: You know that. 582 00:37:55,719 --> 00:37:59,920 Speaker 3: I walk out of Gigi's house feeling heavy and sad. 583 00:38:02,160 --> 00:38:03,320 Speaker 5: I think about how. 584 00:38:03,280 --> 00:38:07,279 Speaker 3: Ika lived such a full life and how it was 585 00:38:07,440 --> 00:38:09,239 Speaker 3: just cut short too soon. 586 00:38:13,360 --> 00:38:15,000 Speaker 5: As I closed the door behind me. 587 00:38:16,239 --> 00:38:19,600 Speaker 3: I choose to believe, though, that she accomplished something big. 588 00:38:21,040 --> 00:38:24,719 Speaker 3: She didn't let people reduce her to an illness, but 589 00:38:24,800 --> 00:38:29,160 Speaker 3: at the same time, she didn't escape from it. Ika 590 00:38:29,280 --> 00:38:33,280 Speaker 3: fully embraced who she was, and she paved the path 591 00:38:33,560 --> 00:38:38,360 Speaker 3: and led the way for many after her. Days later 592 00:38:38,960 --> 00:38:41,640 Speaker 3: I would meet one of them. 593 00:38:42,719 --> 00:38:44,960 Speaker 2: That's after the break. Stay with us. 594 00:38:45,640 --> 00:39:04,759 Speaker 15: Yes, Hello, this is Pauline Nuniez Colley from Colorado. The 595 00:39:04,800 --> 00:39:09,120 Speaker 15: first time I listened to Latino USA was probably several 596 00:39:09,239 --> 00:39:14,000 Speaker 15: years ago. I just remember Maria Na Hossaseining, not dee Vaya, 597 00:39:14,320 --> 00:39:16,880 Speaker 15: And this program has taught me about my history, the 598 00:39:17,040 --> 00:39:20,800 Speaker 15: hint and the grason of my community, which is gratch it. 599 00:39:30,560 --> 00:39:35,840 Speaker 1: Hey, we're back And now for a little bit of context. 600 00:39:36,320 --> 00:39:40,800 Speaker 1: During Ika's time, there was little hope for HIV treatment, 601 00:39:40,920 --> 00:39:45,960 Speaker 1: much less for surviving AIDS. Today, though there's medication that 602 00:39:46,040 --> 00:39:50,680 Speaker 1: allows HIV positive patients to keep an undetectable viral load, 603 00:39:51,400 --> 00:39:54,959 Speaker 1: and it prevents them from transmitting the virus. There's also 604 00:39:55,080 --> 00:39:58,520 Speaker 1: prep a medication available for people at risk so they 605 00:39:58,520 --> 00:40:01,920 Speaker 1: can avoid getting infected. And all of this has allowed 606 00:40:01,960 --> 00:40:05,160 Speaker 1: the US to set a new goal to end the 607 00:40:05,200 --> 00:40:09,839 Speaker 1: epidemic by reducing new infections by ninety percent over the 608 00:40:09,880 --> 00:40:16,080 Speaker 1: next seven years. Still, some things remain the same. People 609 00:40:16,080 --> 00:40:20,160 Speaker 1: who are not white continue to be disproportionately impacted. They're 610 00:40:20,200 --> 00:40:24,080 Speaker 1: not getting equal access to testing, to prevention, or to treatment, 611 00:40:24,560 --> 00:40:28,320 Speaker 1: something that the CDC says is largely due to systemic 612 00:40:28,440 --> 00:40:33,719 Speaker 1: racism and structural issues like poverty and housing instability. For 613 00:40:33,760 --> 00:40:38,279 Speaker 1: women who are not white, the disparities are staggering. Black 614 00:40:38,320 --> 00:40:41,400 Speaker 1: women are fifteen times more likely to develop AIDS than 615 00:40:41,440 --> 00:40:44,919 Speaker 1: white women, and for latinas it's four times as likely, 616 00:40:45,760 --> 00:40:49,400 Speaker 1: and some recent research has shown that in medical settings, 617 00:40:49,440 --> 00:40:54,439 Speaker 1: women were receiving less HIV screenings and prep orientation than men. 618 00:40:55,280 --> 00:40:58,560 Speaker 1: Here again is our producer Patricia Surubaran with the last 619 00:40:58,560 --> 00:41:00,480 Speaker 1: part of our story. 620 00:41:01,320 --> 00:41:05,480 Speaker 3: That's vp'st I'm in a conference room at the Latino 621 00:41:05,480 --> 00:41:08,880 Speaker 3: Commission on AIDS in Manhattan. This organization has been around 622 00:41:08,960 --> 00:41:12,880 Speaker 3: since nineteen ninety and its history is intimately tied to 623 00:41:13,160 --> 00:41:16,719 Speaker 3: Ilka Dania Bayan because her friend and colleague at the 624 00:41:16,800 --> 00:41:20,719 Speaker 3: Human Rights Commission, Denis de Leon, was one of its founders. 625 00:41:21,160 --> 00:41:24,360 Speaker 3: The Commission would later create the Ilka Award that the 626 00:41:24,520 --> 00:41:27,959 Speaker 3: grant to an outspoken and supportive celebrity who advocates for. 627 00:41:28,040 --> 00:41:30,160 Speaker 5: HIV and AIDS causes. 628 00:41:30,800 --> 00:41:33,040 Speaker 3: I initially came here to meet the president of the 629 00:41:33,040 --> 00:41:34,879 Speaker 3: Commission and what you. 630 00:41:34,880 --> 00:41:38,200 Speaker 6: Do, Guillermo chacom and the third President. 631 00:41:38,320 --> 00:41:41,040 Speaker 3: But then he tells me that a woman named Araceli 632 00:41:41,080 --> 00:41:44,440 Speaker 3: Skinnones is about to start a presentation and that her 633 00:41:44,440 --> 00:41:47,640 Speaker 3: talks are great. She's a volunteer at the Commission now, 634 00:41:47,760 --> 00:41:51,279 Speaker 3: but she worked here for more than twenty years. I 635 00:41:51,360 --> 00:41:54,600 Speaker 3: introduce myself to the people in the room. They say 636 00:41:54,640 --> 00:41:59,120 Speaker 3: hello with kisses on the cheek. Some people identify as 637 00:41:59,200 --> 00:42:04,000 Speaker 3: trans women, gay men, sis gender women. They greet each 638 00:42:04,000 --> 00:42:10,800 Speaker 3: other like it's a party. Someone gives out metro cards 639 00:42:10,840 --> 00:42:14,920 Speaker 3: with free trips for the subway. Most of them are 640 00:42:14,960 --> 00:42:18,799 Speaker 3: between their forties and sixties, and they all have two 641 00:42:18,800 --> 00:42:29,759 Speaker 3: things in common, their HIV positive and their latinos. Aracelis 642 00:42:29,800 --> 00:42:33,480 Speaker 3: comes in and it's like Madonna has just arrived. 643 00:42:34,520 --> 00:42:36,640 Speaker 5: People rush to say hello to her. 644 00:42:37,280 --> 00:42:41,239 Speaker 3: Everyone wants a kiss, and then she starts the presentation 645 00:42:41,920 --> 00:42:55,200 Speaker 3: with slides included. She starts by saying that many people 646 00:42:55,280 --> 00:42:58,480 Speaker 3: assume that an elderly person is not gonna get HIV 647 00:42:58,800 --> 00:43:02,280 Speaker 3: because they're no longer saidually active, but that's not true, 648 00:43:02,760 --> 00:43:06,520 Speaker 3: and people in the room start nodding. Aracelis goes on 649 00:43:06,600 --> 00:43:09,840 Speaker 3: to say that many of the people there contracted HIV 650 00:43:10,160 --> 00:43:12,520 Speaker 3: more than twenty years ago, including her. 651 00:43:15,160 --> 00:43:18,759 Speaker 5: She was diagnosed when she was twenty three. Today she's 652 00:43:18,800 --> 00:43:19,479 Speaker 5: fifty eight. 653 00:43:20,760 --> 00:43:22,720 Speaker 3: Most of the people in the room have been taking 654 00:43:22,760 --> 00:43:26,040 Speaker 3: medication to treat HIV or AIDS for a long time, 655 00:43:26,560 --> 00:43:28,920 Speaker 3: and they know about the side effects. 656 00:43:29,320 --> 00:43:30,399 Speaker 5: For at Assellis, for. 657 00:43:30,360 --> 00:43:35,040 Speaker 3: Example, it has meant gaining abdominal weight, looking ten years older, 658 00:43:39,360 --> 00:43:41,840 Speaker 3: and developing a painful hump. 659 00:43:41,680 --> 00:43:42,239 Speaker 5: In her back. 660 00:43:43,120 --> 00:43:46,440 Speaker 3: She talks about really hard things, but she does it 661 00:43:46,440 --> 00:43:50,080 Speaker 3: with humor, so by now she's got everyone in her pocket. 662 00:43:56,520 --> 00:43:59,920 Speaker 3: She talks about a rectile dysfunction and aging with ag 663 00:44:00,280 --> 00:44:03,480 Speaker 3: V as a former substance abuser, but she's not here 664 00:44:03,520 --> 00:44:06,440 Speaker 3: to bring people down. She wants them to go on 665 00:44:06,520 --> 00:44:23,960 Speaker 3: treatment and stay on their meds. By now gets serious, 666 00:44:24,680 --> 00:44:28,360 Speaker 3: she tells her crowd that between two evils, it's better 667 00:44:28,400 --> 00:44:31,600 Speaker 3: to go with the side effects instead of dying of AIDS. 668 00:44:32,040 --> 00:44:34,880 Speaker 3: She then shows a slide with the word stigma in 669 00:44:34,960 --> 00:44:35,640 Speaker 3: big letters. 670 00:44:36,480 --> 00:44:39,200 Speaker 7: Okay in beace In. 671 00:44:41,440 --> 00:44:50,360 Speaker 3: ISAs that the stigma is a true deadly disease. I 672 00:44:50,440 --> 00:44:53,719 Speaker 3: leave Alis continue with her presentation, and we agreed to 673 00:44:53,719 --> 00:44:58,600 Speaker 3: meet some other time. I walk out of that conference 674 00:44:58,680 --> 00:45:02,319 Speaker 3: room thinking Ilka could have been here. If she had 675 00:45:02,360 --> 00:45:06,640 Speaker 3: been able to access effective medication on time, she could 676 00:45:06,680 --> 00:45:24,600 Speaker 3: have been here laughing, making people laugh too. A few 677 00:45:24,640 --> 00:45:28,000 Speaker 3: days later, I'm sitting in Araceli's living room in a 678 00:45:28,080 --> 00:45:32,880 Speaker 3: public housing complex in Queens. Her cute chiwawa is running around. 679 00:45:33,520 --> 00:45:41,640 Speaker 3: Her name, coincidentally is Gigi. Aracelis never knew Ilka in person. 680 00:45:42,200 --> 00:45:45,160 Speaker 3: They moved in the same circles, and she is very 681 00:45:45,200 --> 00:45:46,560 Speaker 3: aware of who she was. 682 00:45:47,160 --> 00:45:49,400 Speaker 4: We lost her too early, but yet she will be 683 00:45:49,400 --> 00:45:50,839 Speaker 4: doing the same thing that I've been doing. 684 00:45:50,920 --> 00:45:52,120 Speaker 11: Ire sure. 685 00:45:52,719 --> 00:45:56,560 Speaker 3: When Ilka passed away in nineteen ninety six, Aracelis was 686 00:45:56,760 --> 00:45:59,799 Speaker 3: thirty one years old. She was the same age as 687 00:46:00,000 --> 00:46:04,560 Speaker 3: Ilka's daughter, Gigi. Arascelis has short and straight hair and 688 00:46:04,600 --> 00:46:07,920 Speaker 3: a sweet expression in her eyes. She smiles at you 689 00:46:07,960 --> 00:46:11,439 Speaker 3: like she's telling you, I see you. I ask about 690 00:46:11,480 --> 00:46:15,440 Speaker 3: a tattoo on her arm. It's a symbol that I 691 00:46:15,520 --> 00:46:16,880 Speaker 3: can't really figure out. 692 00:46:19,600 --> 00:46:20,080 Speaker 11: La Queen. 693 00:46:21,800 --> 00:46:24,880 Speaker 3: She tells me that she's a fan of World of Warcraft, 694 00:46:25,320 --> 00:46:29,760 Speaker 3: a role playing video game. Her tattoo is a symbol 695 00:46:29,880 --> 00:46:34,520 Speaker 3: of Sylvana's, one of the characters Sylvana's is a warrior 696 00:46:34,680 --> 00:46:38,960 Speaker 3: queen with martial power. A Dacelli takes a pill every 697 00:46:39,080 --> 00:46:41,839 Speaker 3: night before going to bed in order to treat her 698 00:46:42,000 --> 00:46:46,160 Speaker 3: HIV and keep AIDS away. She developed and lived with 699 00:46:46,239 --> 00:46:49,200 Speaker 3: AIDS for twenty years, so she has gone on a 700 00:46:49,200 --> 00:46:51,920 Speaker 3: lot of treatments to stay virally suppressed. 701 00:46:54,920 --> 00:46:59,640 Speaker 4: I started with ACT, then I tried DDI viacept Sigean 702 00:47:00,320 --> 00:47:00,680 Speaker 4: serve it. 703 00:47:01,080 --> 00:47:01,919 Speaker 11: Now it's big TV. 704 00:47:02,320 --> 00:47:06,280 Speaker 4: Then before Big Tavy, it was oh, I got persist 705 00:47:06,400 --> 00:47:08,680 Speaker 4: that stribled TRYOMEG. 706 00:47:10,760 --> 00:47:11,560 Speaker 2: It was a bad. 707 00:47:17,680 --> 00:47:21,080 Speaker 3: Sometimes the medication didn't work, or it did, but with 708 00:47:21,440 --> 00:47:22,680 Speaker 3: terrible side effects. 709 00:47:22,840 --> 00:47:26,239 Speaker 4: There was a medication that everybody, let's say, from one 710 00:47:26,280 --> 00:47:29,520 Speaker 4: hundred people ninety nine people will look a key on 711 00:47:29,600 --> 00:47:30,680 Speaker 4: themselves on the street. 712 00:47:31,400 --> 00:47:34,800 Speaker 11: It was so bad to the stomach and you have 713 00:47:34,920 --> 00:47:37,120 Speaker 11: to run. That was not a bathroom. You will learn 714 00:47:37,160 --> 00:47:39,320 Speaker 11: in yourself, and it happened to me like what like 715 00:47:39,440 --> 00:47:39,920 Speaker 11: ten times. 716 00:47:40,280 --> 00:47:43,080 Speaker 3: There was also the challenge of getting access to those 717 00:47:43,200 --> 00:47:44,600 Speaker 3: meds in the first place. 718 00:47:45,080 --> 00:47:47,000 Speaker 11: So let me be honest. 719 00:47:47,120 --> 00:47:50,240 Speaker 4: When I came here, I have to deal with the stigma, 720 00:47:50,760 --> 00:47:54,560 Speaker 4: our positive our being a woman, because we women are 721 00:47:54,640 --> 00:47:58,720 Speaker 4: treated less, okay, plus being a Latina. 722 00:47:59,360 --> 00:48:01,719 Speaker 3: At asceles I first arrived in New York City from 723 00:48:01,760 --> 00:48:04,960 Speaker 3: her hometown of San Juan, Puerto Rico. She was twenty 724 00:48:05,000 --> 00:48:08,400 Speaker 3: three years old and eight months pregnant. She had been 725 00:48:08,440 --> 00:48:11,239 Speaker 3: in a romantic relationship with a man who was using 726 00:48:11,280 --> 00:48:14,600 Speaker 3: injectable drugs. She wanted to get an abortion. 727 00:48:14,760 --> 00:48:14,840 Speaker 8: But. 728 00:48:16,840 --> 00:48:19,600 Speaker 11: Like a week previews of the date of the abortion, 729 00:48:20,360 --> 00:48:23,759 Speaker 11: my baby was kicking inside and I said, I can 730 00:48:23,840 --> 00:48:24,080 Speaker 11: do this. 731 00:48:24,600 --> 00:48:25,120 Speaker 2: I can do this. 732 00:48:25,400 --> 00:48:28,319 Speaker 4: So I staid with the baby, and then months later 733 00:48:28,520 --> 00:48:30,920 Speaker 4: I found out that he was dying. 734 00:48:31,080 --> 00:48:38,719 Speaker 3: At Acelli's former partner died from complications with AIDS just 735 00:48:38,800 --> 00:48:42,200 Speaker 3: a few weeks before delivering her baby. At Ascelli sat 736 00:48:42,280 --> 00:48:45,560 Speaker 3: in a room at the Metropolitan Hospital in Manhattan to 737 00:48:45,680 --> 00:48:48,880 Speaker 3: take an HIV test. It was a cold day in 738 00:48:49,000 --> 00:48:51,200 Speaker 3: February of nineteen eighty eight. 739 00:48:51,400 --> 00:48:53,120 Speaker 4: And they said to come back in two weeks, so 740 00:48:53,600 --> 00:48:55,719 Speaker 4: you can't imagine. It was the worst two weeks of 741 00:48:55,760 --> 00:48:56,160 Speaker 4: my life. 742 00:48:58,080 --> 00:49:01,880 Speaker 3: It wasn't until two thousand and too that a rapid 743 00:49:02,000 --> 00:49:05,759 Speaker 3: test was approved by the FDA to detect HIV in 744 00:49:05,880 --> 00:49:06,640 Speaker 3: twenty minutes. 745 00:49:08,000 --> 00:49:10,960 Speaker 11: And Let's called me and told me the results are positive. 746 00:49:11,120 --> 00:49:14,319 Speaker 11: I was like, yes, thank you, And she was looking 747 00:49:14,360 --> 00:49:17,439 Speaker 11: at me like what's wrong with her? You know what's 748 00:49:17,480 --> 00:49:20,400 Speaker 11: wrong with her? But she's so happy. And then when 749 00:49:20,480 --> 00:49:21,080 Speaker 11: I saw her. 750 00:49:21,080 --> 00:49:24,759 Speaker 4: Expression, I was like, it's something wrong and she say, yes, 751 00:49:24,880 --> 00:49:26,400 Speaker 4: thepacitive you know what that means? 752 00:49:27,200 --> 00:49:29,960 Speaker 11: And then I was like what that means? 753 00:49:30,120 --> 00:49:33,880 Speaker 4: And she said, the positive to HIV. That means that 754 00:49:34,080 --> 00:49:38,359 Speaker 4: you are infected with HIV. Then I asked the next 755 00:49:38,480 --> 00:49:40,560 Speaker 4: question was like how long am I going to live? 756 00:49:41,239 --> 00:49:42,759 Speaker 4: And she said maybe like a year. 757 00:49:44,840 --> 00:49:48,760 Speaker 3: Alascelis gave birth to a healthy boy, but she couldn't 758 00:49:48,800 --> 00:49:52,360 Speaker 3: bear the idea of going back to Puerto Rico. She 759 00:49:52,480 --> 00:49:55,279 Speaker 3: didn't want her family to see her get worse and die. 760 00:49:55,920 --> 00:49:58,680 Speaker 11: I also was in a lot of pain, and I 761 00:49:58,760 --> 00:50:04,360 Speaker 11: started using drugs. What kind of pain, No physical. 762 00:50:04,040 --> 00:50:09,920 Speaker 4: Pain, but pain of being so young and having that 763 00:50:10,080 --> 00:50:13,120 Speaker 4: death sentence, because that's what it was at that time. 764 00:50:13,400 --> 00:50:16,600 Speaker 4: It was a death sentence or my dreams, everything that 765 00:50:16,680 --> 00:50:20,600 Speaker 4: I wanted to do was not going to happen. That 766 00:50:20,800 --> 00:50:27,040 Speaker 4: was scared very much so. And to hide all those 767 00:50:27,120 --> 00:50:33,160 Speaker 4: feelings of being afraid of being perceiving that I was 768 00:50:33,200 --> 00:50:38,560 Speaker 4: going to die anytime, I decided to gnomb that pain 769 00:50:38,640 --> 00:50:39,440 Speaker 4: by using drugs. 770 00:50:40,000 --> 00:50:43,200 Speaker 3: Her son was taken by Child Protection Services when he 771 00:50:43,320 --> 00:50:45,960 Speaker 3: was four years old and he would not return to 772 00:50:46,040 --> 00:50:48,000 Speaker 3: live with her until he was thirteen. 773 00:50:48,640 --> 00:50:52,200 Speaker 4: When I quited drugs, when I got him back, when 774 00:50:52,239 --> 00:50:55,399 Speaker 4: I decided to do a lot of things, he kicked 775 00:50:55,440 --> 00:50:56,840 Speaker 4: me that there is a lot of people like me 776 00:50:56,960 --> 00:50:57,239 Speaker 4: out there. 777 00:50:57,920 --> 00:51:02,520 Speaker 3: Arascells got certified as a council for alcoholism and substance abuse. 778 00:51:03,600 --> 00:51:07,040 Speaker 3: She started commuting every day from Queens to Brooklyn to 779 00:51:07,200 --> 00:51:09,880 Speaker 3: work with a group of men. Then she went on 780 00:51:10,040 --> 00:51:13,960 Speaker 3: to counsel women, and with them it was different. She 781 00:51:14,040 --> 00:51:17,560 Speaker 3: could see herself in them. She helped some of them 782 00:51:17,719 --> 00:51:20,759 Speaker 3: figure out where to leave their children if they could 783 00:51:20,880 --> 00:51:22,719 Speaker 3: no longer take care of them, and that. 784 00:51:22,880 --> 00:51:26,600 Speaker 4: Was very difficult for me and for them for them, 785 00:51:26,640 --> 00:51:33,680 Speaker 4: because they it was like like acknowledging that you was 786 00:51:33,719 --> 00:51:34,279 Speaker 4: going to die. 787 00:51:35,200 --> 00:51:38,000 Speaker 3: With other women, the ones that still had a chance 788 00:51:38,080 --> 00:51:42,160 Speaker 3: to live. She'd be straightforward. She would let them know 789 00:51:42,280 --> 00:51:45,000 Speaker 3: that anybody could have HIV. You know that we need 790 00:51:45,080 --> 00:51:46,200 Speaker 3: to protect ourselves. 791 00:51:46,239 --> 00:51:50,560 Speaker 4: Then we need to empower ourselves because we live in 792 00:51:50,680 --> 00:51:54,160 Speaker 4: a community of a lot of ombres machistas. You know, 793 00:51:54,239 --> 00:51:58,080 Speaker 4: the machismo is like, so if Alma was carrying or 794 00:51:58,280 --> 00:52:03,960 Speaker 4: is carrying a condom on her purse, chiza ho and no, 795 00:52:04,239 --> 00:52:06,759 Speaker 4: it's Neida is that we need to protect ourself because 796 00:52:06,760 --> 00:52:07,800 Speaker 4: if not, who's gonna do it. 797 00:52:09,880 --> 00:52:13,600 Speaker 3: More than half of HIV positive patients in the United 798 00:52:13,680 --> 00:52:18,799 Speaker 3: States are fifty years old and older. Forty percent rely 799 00:52:19,080 --> 00:52:25,000 Speaker 3: on Medicaid because they're low income patients, and Medicaid coverage 800 00:52:25,120 --> 00:52:29,279 Speaker 3: depends on your state of residence, so the rules can 801 00:52:29,440 --> 00:52:32,760 Speaker 3: change in each state in terms of getting HIV treatment. 802 00:52:35,800 --> 00:52:38,799 Speaker 3: Adaslisa has thought a lot about moving back to San Juan. 803 00:52:39,840 --> 00:52:43,520 Speaker 3: She misses the ocean breeze and her family, but she 804 00:52:43,640 --> 00:52:47,120 Speaker 3: knows that she would be putting herself at risk. Puerto Rico, 805 00:52:47,440 --> 00:52:51,160 Speaker 3: although a territory of the United States, still struggles with 806 00:52:51,320 --> 00:52:54,560 Speaker 3: providing access to care for HIV patients, and. 807 00:52:54,680 --> 00:52:57,759 Speaker 4: There is a lot of studies people who travel from 808 00:52:58,000 --> 00:53:01,800 Speaker 4: this center of the island to one which is the capital. 809 00:53:01,880 --> 00:53:04,239 Speaker 11: I mean like two hours or three hours to go 810 00:53:04,320 --> 00:53:05,600 Speaker 11: to a clinic in. 811 00:53:05,640 --> 00:53:09,600 Speaker 3: The continental US, States in the South allocate less money 812 00:53:09,640 --> 00:53:14,480 Speaker 3: for HIV programs than other regions. States like Georgia, Louisiana, 813 00:53:14,680 --> 00:53:18,279 Speaker 3: and Florida also have the highest rates of new infections 814 00:53:18,400 --> 00:53:26,400 Speaker 3: in the nation. In her talks, Arascelis insists that easy 815 00:53:26,600 --> 00:53:30,920 Speaker 3: and steady access to medication can make all the difference. 816 00:53:31,280 --> 00:53:33,120 Speaker 11: Because of people like me that I have been living 817 00:53:33,200 --> 00:53:33,799 Speaker 11: for many years. 818 00:53:34,080 --> 00:53:36,160 Speaker 4: They season and said, Okay, so I'm gonna be like her, 819 00:53:36,760 --> 00:53:38,360 Speaker 4: and she lives for thirty five years, I'm going to 820 00:53:38,400 --> 00:53:40,840 Speaker 4: be living twenty five years, two or forty or fifteen. 821 00:53:41,680 --> 00:53:45,840 Speaker 4: Not only they have better medications today, but then we 822 00:53:46,000 --> 00:53:50,160 Speaker 4: have the proof of people can live longer and productive 823 00:53:50,600 --> 00:53:53,759 Speaker 4: lives living with HIV. I didn't know that I was 824 00:53:53,760 --> 00:53:58,080 Speaker 4: going to see my Grandora. Not only I saw my Grandora, 825 00:53:58,320 --> 00:54:01,799 Speaker 4: I see her graduating, see him going to college. She's 826 00:54:01,880 --> 00:54:04,200 Speaker 4: going to college. She's on Maryland going to college. 827 00:54:10,680 --> 00:54:13,919 Speaker 3: Adacellis tells me that lately she's been taking some time 828 00:54:14,200 --> 00:54:18,800 Speaker 3: for herself, but I immediately see that she can't help 829 00:54:19,080 --> 00:54:24,000 Speaker 3: taking care of others too. As we're starting to say goodbye. 830 00:54:24,600 --> 00:54:27,160 Speaker 3: She shows me a WhatsApp group chat on her phone. 831 00:54:27,920 --> 00:54:30,799 Speaker 3: It's made of family members of trans women who are 832 00:54:31,040 --> 00:54:37,440 Speaker 3: HIV positive. She's constantly texting there, counseling the family members 833 00:54:37,600 --> 00:54:39,880 Speaker 3: on reconciliation and acceptance. 834 00:54:41,520 --> 00:54:42,239 Speaker 8: We know. 835 00:54:52,040 --> 00:54:54,520 Speaker 3: We are about to meet Marino Hossa and I I'm 836 00:54:54,560 --> 00:54:58,239 Speaker 3: waiting for her in a kind of secret meet up 837 00:54:58,280 --> 00:55:01,240 Speaker 3: point because I didn't want the address. 838 00:55:00,880 --> 00:55:04,440 Speaker 5: To reveal what the story is about. There's something I 839 00:55:04,520 --> 00:55:05,439 Speaker 5: haven't mentioned yet. 840 00:55:06,680 --> 00:55:12,160 Speaker 3: Ilka and Maria were friends, and of course Ilka's death 841 00:55:12,520 --> 00:55:15,840 Speaker 3: hit Maria in a personal way. Now I want to 842 00:55:15,880 --> 00:55:19,759 Speaker 3: take Maria to a special place in Washington Heights, Ilka's 843 00:55:19,800 --> 00:55:21,160 Speaker 3: old neighborhood. 844 00:55:21,680 --> 00:55:24,520 Speaker 1: My old haunting grounds. Can we say, say, so where 845 00:55:24,520 --> 00:55:27,200 Speaker 1: I used to hang out? Is I used to live 846 00:55:27,239 --> 00:55:28,839 Speaker 1: in the Heights? Oh? 847 00:55:28,960 --> 00:55:30,200 Speaker 2: Yeah, I live in the Heights. 848 00:55:30,280 --> 00:55:31,760 Speaker 5: So Maria is pretty clueless. 849 00:55:32,680 --> 00:55:35,359 Speaker 3: We crossed the street from our meeting point and enter 850 00:55:35,520 --> 00:55:39,719 Speaker 3: this tiny park with a few trees. We see a 851 00:55:39,760 --> 00:55:42,960 Speaker 3: group of behitos just spending the afternoons, sitting on the 852 00:55:43,000 --> 00:55:48,600 Speaker 3: benches and talking. This is what all the puss is about. 853 00:55:49,120 --> 00:55:51,160 Speaker 2: Oh my god, Oh my god. 854 00:55:51,600 --> 00:55:54,719 Speaker 3: Finally Maria sees the sign that reads that this is 855 00:55:54,880 --> 00:55:59,120 Speaker 3: Ilka Dana Bayan's Park. It was renamed after her in 856 00:55:59,200 --> 00:56:00,239 Speaker 3: two thousand and It's just. 857 00:56:00,320 --> 00:56:02,400 Speaker 1: Like, you know how long it takes to get something 858 00:56:02,480 --> 00:56:05,360 Speaker 1: like this in New York City, to get somebody to 859 00:56:05,520 --> 00:56:08,120 Speaker 1: name a part of Manhattan after you. 860 00:56:08,440 --> 00:56:11,600 Speaker 3: I didn't know exactly how Maria was going to react. 861 00:56:12,560 --> 00:56:15,200 Speaker 3: Now I feel bad because she's very emotional. 862 00:56:15,320 --> 00:56:17,440 Speaker 1: Oh, I knew we were going to be talking about age, 863 00:56:17,520 --> 00:56:21,279 Speaker 1: but I don't immediately think of right, I think of 864 00:56:22,719 --> 00:56:24,160 Speaker 1: all the other people who I knew. 865 00:56:24,680 --> 00:56:28,440 Speaker 2: Butt was my friend. She is from that. 866 00:56:30,000 --> 00:56:33,839 Speaker 1: That long tradition of Dominican women activists that people don't 867 00:56:33,880 --> 00:56:35,680 Speaker 1: necessarily know about. That is her. 868 00:56:36,560 --> 00:56:37,920 Speaker 2: I would look at her and I'd just be like, 869 00:56:38,280 --> 00:56:42,560 Speaker 2: look all of her power, How is she doing this? 870 00:56:43,040 --> 00:56:45,920 Speaker 5: Like Maria couldn't believe that I had found Ika. 871 00:56:46,160 --> 00:56:49,279 Speaker 3: In thirty years of archival clips from Latino USA, I 872 00:56:49,320 --> 00:56:53,600 Speaker 3: mean that's a lot of clips, Maria believed that Ka 873 00:56:54,040 --> 00:56:54,680 Speaker 3: had found me. 874 00:56:55,080 --> 00:56:56,880 Speaker 1: I'm so glad that she made her way into the 875 00:56:57,040 --> 00:56:59,040 Speaker 1: editorial meeting and just be like, y'all are going to 876 00:56:59,080 --> 00:57:00,800 Speaker 1: talk about me to be so happy. 877 00:57:02,640 --> 00:57:06,000 Speaker 3: I'm not superstitious. But as we were about to wrap 878 00:57:06,680 --> 00:57:07,800 Speaker 3: a bird, pooped on me. 879 00:57:08,200 --> 00:57:12,520 Speaker 1: Oh that Waska, thank you for pooping mine. 880 00:57:12,760 --> 00:57:16,919 Speaker 5: Maybe it was Ilka, maybe not, but something is for sure. 881 00:57:18,200 --> 00:57:21,960 Speaker 3: What Maria chose to say about IgA back in nineteen 882 00:57:22,040 --> 00:57:24,959 Speaker 3: ninety six, it remains true. 883 00:57:25,600 --> 00:57:28,400 Speaker 8: Too many of us are still silent and fearful and 884 00:57:28,520 --> 00:57:31,640 Speaker 8: full of shame. I wish you were still here, Ilga. 885 00:57:32,240 --> 00:57:35,800 Speaker 8: You were so good at fighting a Cilentzio and fighting 886 00:57:36,360 --> 00:57:36,840 Speaker 8: for life. 887 00:57:37,520 --> 00:57:40,880 Speaker 7: I want to outlive Ace, and I want all of 888 00:57:41,000 --> 00:57:43,000 Speaker 7: us to outlive a thank you. 889 00:58:02,000 --> 00:58:05,000 Speaker 1: This episode was produced by Patrica Surbaran, who was edited 890 00:58:05,040 --> 00:58:09,120 Speaker 1: by Andrea Lopez Guzzado and mixed by Julia Caruso, Gabriel 891 00:58:09,200 --> 00:58:12,880 Speaker 1: Lebiez and jj Carubin. Fact checking for this episode by 892 00:58:12,960 --> 00:58:18,000 Speaker 1: Monica Moreles Garcia. Special thanks to Guillermo Chacoon, Senaida Mendez, 893 00:58:18,160 --> 00:58:22,760 Speaker 1: Elizabeth Velasquez, Larry Nuno, and the Central Library at Hunter College. 894 00:58:23,240 --> 00:58:28,680 Speaker 1: The Latino USA team includes Marta Martinez, Mike Sargent, Daisy Contreras, 895 00:58:29,040 --> 00:58:34,000 Speaker 1: Victoria Estrada, Renaldo Leanos Junior, and Elizabeth Lowenthal Torres. Our 896 00:58:34,160 --> 00:58:38,360 Speaker 1: editorial director is Fernanda Santos. Our director of engineering is 897 00:58:38,600 --> 00:58:42,680 Speaker 1: Stephanie Lebau. Our marketing manager is Luis Luna. Our theme 898 00:58:42,760 --> 00:58:45,720 Speaker 1: music was composed by Sania Rouinos, I'm your host and 899 00:58:45,800 --> 00:58:49,040 Speaker 1: executive producer Mariao Josa. Join us again on our next 900 00:58:49,120 --> 00:58:51,240 Speaker 1: episode and in the meantime find us on social media 901 00:58:51,280 --> 00:58:55,680 Speaker 1: and remember not tevayas Ciao Ikeayan. 902 00:59:01,360 --> 00:59:04,720 Speaker 16: Funding for Latino USA's coverage of a culture of health 903 00:59:05,000 --> 00:59:07,080 Speaker 16: is made possible in part by a grant from the 904 00:59:07,200 --> 00:59:11,720 Speaker 16: Robert Wood Johnson Foundation. Latino USA is made possible in 905 00:59:11,800 --> 00:59:16,200 Speaker 16: part by New York Women's Foundation. The New York Women's 906 00:59:16,240 --> 00:59:20,160 Speaker 16: Foundation funding women leaders that build solutions in their communities 907 00:59:20,520 --> 00:59:26,200 Speaker 16: and celebrating thirty years of radical generosity and Latino USA 908 00:59:26,600 --> 00:59:30,680 Speaker 16: thirtieth anniversary episodes are made possible with support from our 909 00:59:30,800 --> 00:59:36,600 Speaker 16: legacy sustainers, the Brett Family Foundation, Alonso Contu, Carmen Rito, 910 00:59:36,680 --> 00:59:43,320 Speaker 16: Wong Vamos Enterprises, the National Association of Hispanic Journalists, April Gasler, 911 00:59:43,880 --> 00:59:49,280 Speaker 16: doctor Elmo Randolph, Belinda de la Libertad, Angela Garcia Simms, 912 00:59:49,640 --> 00:59:55,680 Speaker 16: and Priscilla Rojas. Additional donors include Melba Laura, Andy Marx 913 00:59:56,080 --> 00:59:57,360 Speaker 16: and sal Morales. 914 01:00:00,040 --> 01:00:02,960 Speaker 1: M HM, this is the first time in this studio 915 01:00:03,040 --> 01:00:06,439 Speaker 1: that Miko the Cat is like I'm here, I'm making 916 01:00:06,520 --> 01:00:07,320 Speaker 1: my presence felt. 917 01:00:08,640 --> 01:00:09,640 Speaker 2: I cannot believe him. 918 01:00:12,320 --> 01:00:14,840 Speaker 5: He's like I, like the Venezuelan women everywhere. 919 01:00:15,440 --> 01:00:17,760 Speaker 2: Miko gal Mate, okay gal Mate,