WEBVTT 1 00:00:00.760 --> 00:00:06.280 Ola Latino USA listener, kbastaf, we are celebrating thirty years 2 00:00:06.320 --> 00:00:08.959 on the ear. I mean it's huge three that anos, 3 00:00:09.480 --> 00:00:13.680 and so we're celebrating with you because honestly, you, dear listener, 4 00:00:13.720 --> 00:00:14.560 you made it happen. 5 00:00:15.040 --> 00:00:16.480 So we want to hear from you. 6 00:00:17.000 --> 00:00:20.599 What is an episode that you shared with someone else 7 00:00:20.640 --> 00:00:22.200 You were like, oh my god, I just have to 8 00:00:22.720 --> 00:00:25.000 and you sent it to your mom or your THEO 9 00:00:25.160 --> 00:00:28.000 or your dea, your son, your daughter. Let us know. 10 00:00:28.200 --> 00:00:30.760 Leave us a voicemail at six four six five seven 11 00:00:30.880 --> 00:00:33.560 one one two two four. Again that's six four six 12 00:00:33.760 --> 00:00:36.800 five seven one one two two four, and we might 13 00:00:36.960 --> 00:00:41.960 just feature your call on an upcoming episode in Yes, 14 00:00:42.920 --> 00:00:46.040 this is Latino USA, the Radio journal of News and 15 00:00:46.159 --> 00:00:49.479 Kurtur Latino US six let Latino USA. 16 00:00:49.720 --> 00:00:53.720 I'm Mariainojosa. We bring you stories that are underreported but 17 00:00:53.840 --> 00:00:56.560 that mattered to you, overlooked by the rest of the media. 18 00:00:56.640 --> 00:00:58.920 And while the country is struggling to deal with these, we. 19 00:00:58.960 --> 00:01:02.960 Listen to the stories Black and Latino Studio United Latino Front, 20 00:01:03.200 --> 00:01:07.520 a cultural renaissance organizing at the forefront of the movement. 21 00:01:08.240 --> 00:01:11.160 I'm Maria Ino Josa, Nosebayan. 22 00:01:12.920 --> 00:01:16.120 Late last year at Latino USA. We started planning special 23 00:01:16.160 --> 00:01:20.800 episodes to mark the show's thirtieth anniversary, and we were 24 00:01:20.840 --> 00:01:25.600 given this four hundred page archival document with three decades 25 00:01:26.040 --> 00:01:30.080 of audio from the show. It was a lot, and 26 00:01:30.200 --> 00:01:35.760 we were supposed to explore potential ideas. I decided to 27 00:01:35.840 --> 00:01:40.080 type HIV in the search bar. I'm not sure why. 28 00:01:40.760 --> 00:01:44.280 I guess I was curious. I was wondering how Latino 29 00:01:44.360 --> 00:01:49.120 USA had covered the HIV eights epidemic. And for a 30 00:01:49.120 --> 00:01:51.960 little bit of context, I'm thirty two years old and 31 00:01:52.000 --> 00:01:55.200 I'm an immigrant from Venezuela, so I learned about the 32 00:01:55.240 --> 00:01:58.760 height of the epidemic in the US much later after 33 00:01:58.920 --> 00:02:02.440 it had already happened. And the image that I had 34 00:02:03.040 --> 00:02:07.000 was mainly of white gay men who were getting very sick, 35 00:02:07.040 --> 00:02:08.640 and they were protesting about it. 36 00:02:08.720 --> 00:02:12.000 The US government is abandoning people with. 37 00:02:12.080 --> 00:02:14.440 Age getting worse. 38 00:02:15.080 --> 00:02:18.160 Topping a list of likely victims are male homosexuals who 39 00:02:18.200 --> 00:02:21.840 have many partners and drug users who inject themselves with needle. 40 00:02:21.919 --> 00:02:25.440 All over the country, homosexuals are reporting increased discrimination. 41 00:02:25.960 --> 00:02:29.920 I expected Latino USA to have covered this differently, and 42 00:02:29.960 --> 00:02:37.200 I wasn't wrong. In the archives, I found a segment 43 00:02:37.240 --> 00:02:40.000 from nineteen ninety four about a nineteen year old Latino 44 00:02:40.160 --> 00:02:43.560 from San Antonio. His name was Javier and he was 45 00:02:43.760 --> 00:02:48.480 HIV positive, and Xavier was visiting classrooms to educate young 46 00:02:48.520 --> 00:02:50.840 people like him about the disease. 47 00:02:51.200 --> 00:02:55.280 I think maybe, like if I'd had someone come to 48 00:02:55.320 --> 00:02:58.520 my school before I was infected and talked to me, 49 00:02:58.919 --> 00:03:00.000 that probably would have changed. 50 00:03:01.400 --> 00:03:04.760 I also found a very alarming report from our host 51 00:03:04.919 --> 00:03:08.080 Maria J. Jos in Puerto Rico from nineteen ninety five. 52 00:03:08.919 --> 00:03:09.800 Has changed. 53 00:03:10.120 --> 00:03:10.919 That year, the. 54 00:03:11.040 --> 00:03:15.520 Island actually had the highest rate of HIV infections in 55 00:03:15.560 --> 00:03:19.080 the whole country, and Maria was there to focus on 56 00:03:19.120 --> 00:03:23.560 the increasing number of women getting infected. I learned from 57 00:03:23.560 --> 00:03:26.200 her report that sexism was a big part of the 58 00:03:26.280 --> 00:03:26.960 problem there. 59 00:03:27.760 --> 00:03:30.680 I used to tell him I would never forgive him 60 00:03:31.080 --> 00:03:32.400 if he got me infected. 61 00:03:35.320 --> 00:03:39.920 I kept digging in Latino USA's archives, and then I 62 00:03:40.080 --> 00:03:40.840 found her. 63 00:03:42.240 --> 00:03:44.760 Her name was Ilka Dania Payan. 64 00:03:45.640 --> 00:03:48.720 Those who still believe that you can get AIDS from 65 00:03:48.720 --> 00:03:52.160 a kiss or from a food place that exists today 66 00:03:52.360 --> 00:03:57.840 sixteen years later. There is too much ignorance, too much discrimination, 67 00:03:59.160 --> 00:04:00.640 too much in humanity. 68 00:04:01.720 --> 00:04:04.920 The strength in her voice really stopped me in my tracks. 69 00:04:05.600 --> 00:04:08.040 I was like, who's this fierce woman? 70 00:04:08.680 --> 00:04:12.080 I want to outlive eights and I want all of 71 00:04:12.160 --> 00:04:14.200 us to outlive a thank you. 72 00:04:23.720 --> 00:04:26.839 After listening to Ilka in that speech in San Francisco 73 00:04:27.160 --> 00:04:30.680 in October of nineteen ninety five, I just had to 74 00:04:30.720 --> 00:04:34.359 know more about her. What else did Latino USA have 75 00:04:34.480 --> 00:04:38.000 on Ilka Dania Payan, So I searched to see if 76 00:04:38.040 --> 00:04:41.440 I found her again, and I did. 77 00:04:42.400 --> 00:04:47.040 The famous actress from telenovelas, the lawyer who defended immigrants' rights, 78 00:04:47.480 --> 00:04:51.120 and most recently, the most outspoken Latina on AIDS issues, 79 00:04:51.520 --> 00:04:55.279 died on April sixth of AIDS. 80 00:04:55.320 --> 00:05:00.160 Just months after delivering that powerful speech. Ilka was gone. 81 00:05:00.800 --> 00:05:02.280 She was fifty three years old. 82 00:05:04.160 --> 00:05:06.920 She told Latinas that there was one thing they could 83 00:05:07.000 --> 00:05:09.640 do to try to save their own lives. Get an 84 00:05:09.640 --> 00:05:12.919 AIDS test and insist that your partner do the same. 85 00:05:13.800 --> 00:05:17.120 I followed her words. I know of many other Latinas 86 00:05:17.160 --> 00:05:21.040 who got tested after they heard Ilga speak. Thanks to Ilga, 87 00:05:21.320 --> 00:05:23.080 at least some things have changed. 88 00:05:27.200 --> 00:05:30.160 I couldn't imagine how Ilka was able to face the 89 00:05:30.200 --> 00:05:33.880 world with this force while she was battling the most 90 00:05:33.920 --> 00:05:39.359 stigmatized and hopeless illness of her time. So I was 91 00:05:39.440 --> 00:05:44.160 left wondering how did she become the most outspoken Latina 92 00:05:44.360 --> 00:05:45.279 living with HIV? 93 00:05:46.440 --> 00:05:47.520 What was her story? 94 00:05:48.279 --> 00:05:52.120 And what would life look like for Ilka if she 95 00:05:52.160 --> 00:05:53.560 were still around us today. 96 00:05:57.880 --> 00:06:02.200 From Fudromidia and PRX, It's Latino USA. I'm Mariaino Posa 97 00:06:02.680 --> 00:06:07.320 today the HIV age epidemic and women. A story of 98 00:06:07.440 --> 00:06:19.400 two Latinas breaking stigma from yesterday and today. Latino USA 99 00:06:19.440 --> 00:06:23.720 producer Patrisa Sulbran has the story and here she is. 100 00:06:26.560 --> 00:06:31.440 Picture this. It's nineteen ninety three. We're twelve years into 101 00:06:31.440 --> 00:06:35.840 the epidemic of HIV. Eights New York City is the 102 00:06:35.880 --> 00:06:41.240 epicenter of infections. Per capita, more than forty six thousand 103 00:06:41.320 --> 00:06:44.000 people have died in the city since the first case 104 00:06:44.120 --> 00:06:49.960 was officially reported in black and Latino communities. Two major 105 00:06:50.040 --> 00:06:54.360 public health crisis are colliding. The crack epidemic has already 106 00:06:54.400 --> 00:06:59.279 separated families and ended lives, and the HIV virus is 107 00:06:59.320 --> 00:07:04.719 attacking people immune systems with no proper treatment. More and 108 00:07:04.880 --> 00:07:08.760 more people are developing AIDS, which is putting them at 109 00:07:08.760 --> 00:07:14.240 a higher risk of dying. It's June nineteenth and the 110 00:07:14.280 --> 00:07:19.240 summer is about to get real hot and sticky. Inside 111 00:07:19.360 --> 00:07:23.720 the Cardinal Spellman AIDS pavilion at Saint Clair's Hospital in Manhattan, 112 00:07:24.400 --> 00:07:28.960 most of the patients are Latinos and Latinas. One patient's 113 00:07:29.040 --> 00:07:36.880 name is Ector Lavo. He dies on this day. Ector 114 00:07:36.920 --> 00:07:39.760 Lavo doesn't need much of an introduction. He was a 115 00:07:39.800 --> 00:07:49.640 salsa giant. He died from complications with AIDS, but his 116 00:07:49.760 --> 00:07:55.160 obituaries don't mention aids. Larga and fermidad, a long illness, 117 00:07:55.360 --> 00:07:59.720 said the Spanish newspaper. At bais cardiac arrest, The New 118 00:07:59.840 --> 00:08:03.640 York Times reported, and this is not a story about him, 119 00:08:03.880 --> 00:08:07.320 as I'm sure you realize by now, but his death 120 00:08:07.640 --> 00:08:13.840 speaks of the times, times of secrecy and stigma. Speaking 121 00:08:13.960 --> 00:08:19.360 up was unthinkable, But Ilka Tania Payan is about to 122 00:08:19.440 --> 00:08:21.280 do just that. 123 00:08:23.680 --> 00:08:27.600 Live and one person who has already learned her HIV 124 00:08:27.760 --> 00:08:30.240 status is now using the information to help others. 125 00:08:30.520 --> 00:08:32.640 She's speaking out with courage and conviction. 126 00:08:33.080 --> 00:08:35.800 HIV virus was sexually transmitted to me by a young 127 00:08:35.880 --> 00:08:40.640 Puerto Rican artist whom I respected and loved dearly. It 128 00:08:40.679 --> 00:08:42.400 happens sometime between June of eighty one. 129 00:08:42.440 --> 00:08:48.400 It's October fourteenth, we're still in nineteen ninety three. That morning, 130 00:08:49.040 --> 00:08:53.400 Ilka appears at the Human Rights Commission office in Lower Manhattan. 131 00:08:54.240 --> 00:08:58.000 She's a familiar face. Ilka's famous for her role in 132 00:08:58.040 --> 00:09:03.280 at Telenovela on Telemundo. She's wearing a yellow blazer. Her 133 00:09:03.360 --> 00:09:07.640 lips are painted in a red wine color. Her beautiful, 134 00:09:07.760 --> 00:09:12.160 peppered and wavy hair is loose. Her hazel eyes are 135 00:09:12.200 --> 00:09:12.800 wide open. 136 00:09:13.320 --> 00:09:16.800 Ilka Tanya Payan live with her secret and now in 137 00:09:16.840 --> 00:09:17.920 a very public way. 138 00:09:18.000 --> 00:09:20.800 She was telling the world that she was HIV positive, 139 00:09:21.440 --> 00:09:22.600 sometimes with humor. 140 00:09:23.120 --> 00:09:26.360 Look at me, you know, I can't give a life. 141 00:09:28.240 --> 00:09:32.240 Ka took the HIV test in nineteen eighty six. A 142 00:09:32.360 --> 00:09:35.640 reporter asked her why she decided to wait seven years 143 00:09:35.679 --> 00:09:38.240 to publicly disclose her diagnosis. 144 00:09:38.440 --> 00:09:42.360 I think we all know the answer, don't we. You 145 00:09:42.440 --> 00:09:43.120 know the answer. 146 00:09:44.080 --> 00:09:45.559 It's fear of discrimination. 147 00:09:46.280 --> 00:09:50.600 It is fear of rejection. Her sisters in the Dominican Republic. 148 00:09:51.000 --> 00:09:54.840 Ka's home country had already heard reports about her illness. 149 00:09:55.120 --> 00:09:57.000 I was afraid that once they found out what was 150 00:09:58.040 --> 00:10:00.760 my condition, they would get up and in the beds 151 00:10:00.760 --> 00:10:02.439 and spray the sheets. 152 00:10:03.559 --> 00:10:06.200 Sat next Terminusian. 153 00:10:05.240 --> 00:10:07.480 Says she will continue her work as a member of 154 00:10:07.520 --> 00:10:08.520 the New York City. 155 00:10:08.360 --> 00:10:09.439 Human Rights Commission. 156 00:10:12.559 --> 00:10:17.320 The next year, nineteen ninety four, AIDS would become the 157 00:10:17.440 --> 00:10:22.840 leading cause of death for all young Americans. Black people 158 00:10:23.200 --> 00:10:28.320 and Latinos were the most impacted. It would take one 159 00:10:28.400 --> 00:10:32.200 more year and tens of thousands of more lives lost 160 00:10:32.760 --> 00:10:37.280 before the FDA finally approved an anti viral drug to 161 00:10:37.360 --> 00:10:41.600 treat HIV. It was the first clear sign of hope 162 00:10:41.720 --> 00:10:47.000 in fourteen long years for Ilka and many in her generation, 163 00:10:47.200 --> 00:10:49.559 though it was already too late. 164 00:10:51.760 --> 00:10:59.400 Me as you must already know, and your new bilingual teacher, 165 00:11:00.400 --> 00:11:02.760 my name is miss Margarita. 166 00:11:02.840 --> 00:11:07.120 And before the press conference, many people only knew Ilga 167 00:11:07.160 --> 00:11:10.800 as an actress. She was a pioneer of the Spanish 168 00:11:10.840 --> 00:11:14.360 speaking theater scene in New York. She also starred in 169 00:11:14.400 --> 00:11:18.160 movies and TV shows, both in English and Spanish. 170 00:11:18.600 --> 00:11:20.200 Pector you come. 171 00:11:20.120 --> 00:11:22.480 Out of there right now and don't give these people 172 00:11:22.520 --> 00:11:27.320 no more trouble. 173 00:11:29.080 --> 00:11:31.559 That was only one side of who she was, though. 174 00:11:32.280 --> 00:11:36.880 IgA was also a prominent advocate for HIV positive Latinos 175 00:11:37.000 --> 00:11:42.320 and immigrants. She was an attorney. She created an important 176 00:11:42.400 --> 00:11:45.480 legal clinic for immigrants in the mid eighties at the 177 00:11:45.559 --> 00:11:50.200 Gay Men's Health Crisis Center, perhaps the most important ango 178 00:11:50.440 --> 00:11:52.480 helping HIV patients back then. 179 00:11:54.559 --> 00:11:56.920 I must say that I am not grateful to be here. 180 00:11:57.440 --> 00:11:59.840 I am very angry, and I am in more. 181 00:12:01.520 --> 00:12:04.720 She even went to the United Nations in December of 182 00:12:04.840 --> 00:12:06.959 nineteen ninety three. 183 00:12:07.040 --> 00:12:09.840 We don't need any more experts without HIV or aces, 184 00:12:09.840 --> 00:12:12.000 and we don't need any more task forces. 185 00:12:12.880 --> 00:12:17.160 She showed up wearing a stunning v neck black dress 186 00:12:17.200 --> 00:12:20.960 with big shoulder pads and a large white and black 187 00:12:21.040 --> 00:12:23.680 flower embroidered on one of the sides. 188 00:12:24.120 --> 00:12:26.559 It work is not done to quickly remove the stigma 189 00:12:26.600 --> 00:12:30.400 of eights while we still look good. It's going to 190 00:12:30.400 --> 00:12:33.720 get harder for everyone to deal with it. It's pretty 191 00:12:33.800 --> 00:12:37.280 ugly already. 192 00:12:37.360 --> 00:12:40.120 I wanted to know more about Ika, but I wasn't 193 00:12:40.120 --> 00:12:49.400 finding much. After her passing. There were no longer specials 194 00:12:49.440 --> 00:12:53.840 about her on TV or documentaries on her life. I 195 00:12:53.880 --> 00:12:57.040 got excited when I came across an article titled these 196 00:12:57.080 --> 00:13:01.400 women are Forgotten HIV Warriors, but there was no mention 197 00:13:01.480 --> 00:13:11.600 of her. Instead, the article featured Elizabeth Taylor and Princess Diana. 198 00:13:11.840 --> 00:13:15.920 But then I found a person quoted in Ilka's obituary 199 00:13:16.160 --> 00:13:21.560 in the New York Times. The article read quote a friend, 200 00:13:22.200 --> 00:13:27.040 Carla Fine said the cause of death was AIDS. It 201 00:13:27.080 --> 00:13:32.120 was just that, but it was something I started researching 202 00:13:32.520 --> 00:13:35.320 and discovered that Carla Fine was a published author. 203 00:13:36.240 --> 00:13:36.839 I looked her. 204 00:13:36.880 --> 00:13:41.280 Up online and I sent her an email. Because of her, 205 00:13:41.880 --> 00:13:43.839 I was going to be able to get to know 206 00:13:44.000 --> 00:13:46.840 Ilka beyond the headlines. 207 00:13:50.559 --> 00:13:51.920 Coming up on Latino USA. 208 00:13:52.200 --> 00:13:56.800 Ilka seeks treatment, but soon she realizes that healthcare for 209 00:13:56.920 --> 00:14:01.160 women with HIV is last on the list of priorities. 210 00:14:02.080 --> 00:14:17.280 Stay with us, Yes, Olato is. 211 00:14:17.720 --> 00:14:21.400 I'm Gini Montaro. I'm senior producer for Futuro Studios and 212 00:14:21.520 --> 00:14:23.800 also moonlight occasionally for a Latino USA. 213 00:14:24.440 --> 00:14:25.040 I've been with the. 214 00:14:25.040 --> 00:14:28.000 Company since twenty sixteen, and I actually started as our 215 00:14:28.080 --> 00:14:32.160 company's engineer. I love all things audio and sound design, 216 00:14:32.160 --> 00:14:34.760 which means when I go to write stories, I'm always 217 00:14:34.760 --> 00:14:37.160 thinking about fun ways to play with effects and music, 218 00:14:37.760 --> 00:14:39.720 because how you hear a story. 219 00:14:39.520 --> 00:14:40.280 Makes a difference. 220 00:14:41.320 --> 00:14:43.440 The newsroom at Futuru was a breath of fresh air 221 00:14:43.560 --> 00:14:45.240 from the news spaces that I was used. 222 00:14:45.080 --> 00:14:45.640 To working in. 223 00:14:46.280 --> 00:14:48.080 People like me with Feeaten. 224 00:14:47.840 --> 00:14:52.320 Two worlds and two languages, it felt like home. Happy anniversary, 225 00:14:52.400 --> 00:14:56.560 Latino Usa Gerrace Port and thank you listener for celebrating 226 00:14:56.600 --> 00:15:04.680 with us. 227 00:15:07.040 --> 00:15:10.120 Hey, we're back. And before the break, we met the 228 00:15:10.160 --> 00:15:14.640 famous actress and activist Ilka Danya Bayan, who in nineteen 229 00:15:14.760 --> 00:15:19.600 ninety three went public about being HIV positive. Later, she 230 00:15:19.640 --> 00:15:22.239 went on to become one of the most outspoken Latinas 231 00:15:22.560 --> 00:15:26.360 in the country and the world about HIV AIDS issues. 232 00:15:26.640 --> 00:15:29.280 Here's producer Patricia Subran once. 233 00:15:29.120 --> 00:15:33.480 Again, guys, and then I went down the rabbit hole. 234 00:15:33.520 --> 00:15:37.320 Basically days after Carla Fine and I exchanged emails, she 235 00:15:37.440 --> 00:15:40.480 welcomes me to her apartment in Chelsea on the West 236 00:15:40.560 --> 00:15:45.160 side of Manhattan. She's now seventy seven years old. She 237 00:15:45.240 --> 00:15:47.640 has a soothing voice and a petite figure. 238 00:15:48.440 --> 00:15:51.960 You know it's late, but it's you know, she's rediscovered. 239 00:15:52.240 --> 00:15:55.960 It's a breezy afternoon in May. Now I learned that 240 00:15:56.040 --> 00:15:59.880 Carla and Ilka were really close, so much so that 241 00:16:00.320 --> 00:16:04.320 Ilka specifically asked Carla to make sure that the press 242 00:16:04.400 --> 00:16:06.360 reported she had died of AIDS. 243 00:16:06.680 --> 00:16:08.960 She said she wanted that we're not alone today. 244 00:16:09.680 --> 00:16:10.640 My kids are great. 245 00:16:12.000 --> 00:16:15.960 Carla invited someone else to our meeting. It's Gigi, Ilka's 246 00:16:15.960 --> 00:16:21.200 only daughter. I immediately recognize her from the press conference in 247 00:16:21.280 --> 00:16:25.479 nineteen ninety three because she was standing right behind her mom. 248 00:16:25.840 --> 00:16:30.880 She was only twenty nine back then. Now it's the 249 00:16:30.960 --> 00:16:35.280 three of us sitting in Carla's cozy living room, surrounded 250 00:16:35.280 --> 00:16:39.040 by books. For the next three hours, they share with 251 00:16:39.160 --> 00:16:43.720 me their most treasured memories of Ilka, from her childhood 252 00:16:43.760 --> 00:16:46.920 in the Dominican Republic to her last days in New 253 00:16:47.000 --> 00:16:51.600 York City. But as it happens, memory doesn't work in 254 00:16:51.640 --> 00:16:56.840 a straight line, so our conversation doesn't really follow a chronology. 255 00:16:58.080 --> 00:17:01.800 Carla and Gigi start sharing caring anecdotes of Ilka when 256 00:17:01.840 --> 00:17:02.520 she was sick. 257 00:17:03.480 --> 00:17:06.040 Gig warns me, as if it were a bad thing, 258 00:17:06.600 --> 00:17:08.800 that she'll probably cry a lot. 259 00:17:09.960 --> 00:17:15.520 Surprisingly, we actually end up laughing a lot. Gig remembers 260 00:17:15.560 --> 00:17:18.720 this one time when Ilka had a fever and they 261 00:17:18.760 --> 00:17:20.640 had to call the ambulance. 262 00:17:20.880 --> 00:17:23.840 And she's like up on the bed, sick as a dog, 263 00:17:24.119 --> 00:17:27.520 weighs ninety pounds, soaking wet because she's so sick, and 264 00:17:27.560 --> 00:17:29.040 she's got her leg up in the air and she's 265 00:17:29.040 --> 00:17:31.320 trying to put on pantyhose, and then she's got the 266 00:17:31.320 --> 00:17:34.800 lipstick over here, and I'm like Mitra muhe. I'm like, 267 00:17:35.160 --> 00:17:38.000 what is wrong with you? You are going to the hospital. 268 00:17:38.040 --> 00:17:40.040 We are putting you in an ambulance and she's like, 269 00:17:40.119 --> 00:17:42.200 oh no, they cannot see me like this. 270 00:17:42.720 --> 00:17:46.119 When they finally go downstairs, the EMT waiting by the 271 00:17:46.119 --> 00:17:50.639 ambulance sees Ilka and tells her, oh, you're so beautiful today, 272 00:17:50.800 --> 00:17:51.400 and she was like. 273 00:17:52.359 --> 00:17:54.960 You know, I'll like see I still got it. And 274 00:17:55.000 --> 00:17:57.639 I'm like, yep, she still got it. Wow, you know, 275 00:17:57.720 --> 00:17:58.760 and he was lovely. 276 00:17:59.000 --> 00:18:02.120 And there was this other time when Gigi had this 277 00:18:02.800 --> 00:18:07.000 somber conversation with Ilka after she came out with her diagnosis. 278 00:18:07.560 --> 00:18:11.920 Gigi asked her to please avoid becoming the AIDS poster girl. 279 00:18:12.840 --> 00:18:16.439 Ika was like, do not worry, it's not going to happen. 280 00:18:17.119 --> 00:18:20.720 But her activism, Gigi says, was so big that she 281 00:18:20.880 --> 00:18:21.840 wasn't shying away. 282 00:18:22.760 --> 00:18:24.400 So one day I'm down. 283 00:18:24.200 --> 00:18:25.720 In the subway and I look and there's this huge 284 00:18:25.720 --> 00:18:28.159 postress and I was like, you know, there were no 285 00:18:28.240 --> 00:18:29.800 cell phones back then, So I get out of the 286 00:18:29.840 --> 00:18:31.720 train and pick up the public phone and a caller. 287 00:18:31.800 --> 00:18:32.680 I'm like, what. 288 00:18:32.840 --> 00:18:37.199 Happens to not be the AIDS poster girl? I just 289 00:18:37.720 --> 00:18:41.760 literally saw a poster of you as the AIDS poster girl. 290 00:18:50.760 --> 00:18:54.360 Even in her most passionate she had a twinkle. There 291 00:18:54.400 --> 00:18:56.280 was a twinkle to her kind of thing. There was 292 00:18:56.600 --> 00:19:00.520 this way of talking that she just it. I mean, 293 00:19:00.520 --> 00:19:02.960 I guess it's the definition of charisma, you know. 294 00:19:03.119 --> 00:19:05.000 She just sparkled. 295 00:19:05.520 --> 00:19:09.360 Carla and Ilka became friends in the early nineties, when 296 00:19:09.400 --> 00:19:12.560 Ilka was about to turn fifty. It was a very 297 00:19:12.600 --> 00:19:16.919 difficult time because Ika already knew about her diagnosis, but 298 00:19:17.000 --> 00:19:20.840 it was also an exciting time. New York City had 299 00:19:20.880 --> 00:19:23.240 elected its first black mayor. 300 00:19:23.040 --> 00:19:24.600 The Honorable David N. 301 00:19:25.040 --> 00:19:30.560 Lincoln's, and by then Ilka had become so prominent in 302 00:19:30.640 --> 00:19:34.840 political and civic circles that she actually paused her acting 303 00:19:34.920 --> 00:19:38.200 career to work for the Mayor's office as a Commissioner 304 00:19:38.280 --> 00:19:41.840 on Human Rights. Carla was in charge of the press 305 00:19:41.880 --> 00:19:43.080 office for the commission. 306 00:19:43.520 --> 00:19:46.800 They started getting involved with anything that was discriminatory. 307 00:19:47.119 --> 00:19:48.640 Every day there was a new cause. 308 00:19:48.880 --> 00:19:50.600 She would see a fight happening, She'd be like, Oh, 309 00:19:50.680 --> 00:19:52.000 let me go over there and get an that thing 310 00:19:52.040 --> 00:19:54.680 over there, you know what I mean. And then the 311 00:19:54.720 --> 00:19:56.080 next thing you knew she was leading. 312 00:19:56.119 --> 00:19:56.600 The whole of the. 313 00:19:56.560 --> 00:20:02.439 Town knew firsthand what it was like to be a 314 00:20:02.480 --> 00:20:06.320 struggling New Yorker trying to make against meet. Before devoting 315 00:20:06.359 --> 00:20:10.880 herself to theater and law and activism, she kept many 316 00:20:10.960 --> 00:20:14.359 jobs in her life, including being a secretary and a 317 00:20:14.359 --> 00:20:18.440 flight attendant. In the seventies, she lived in a tenement 318 00:20:18.600 --> 00:20:22.240 with her daughter Gigi. These were tough times for women. 319 00:20:22.800 --> 00:20:26.600 Congress was just starting to pass laws protecting women against 320 00:20:26.640 --> 00:20:31.760 sex discrimination, but discrimination still happened. So when Ilka applied 321 00:20:31.760 --> 00:20:36.159 for public housing, she was forced to lie in her application. 322 00:20:36.800 --> 00:20:39.800 She said that her child was actually a boy so 323 00:20:39.840 --> 00:20:43.760 they could be considered for a two bedroom apartment. Twenty 324 00:20:43.840 --> 00:20:47.600 years later, in the nineties, some things hadn't changed much 325 00:20:47.640 --> 00:20:51.840 for women, and the AIDS epidemic was making that clear. 326 00:20:54.960 --> 00:20:59.560 There was widespread anecdotal evidence suggesting that women were getting 327 00:20:59.640 --> 00:21:05.840 persie distant guide ncological infections that were correlated with HIV. However, 328 00:21:06.200 --> 00:21:10.600 the CDC didn't include invasive cervical cancer in their AIDS 329 00:21:10.760 --> 00:21:17.479 surveillance definition until nineteen ninety three, and yet women wouldn't 330 00:21:17.480 --> 00:21:21.240 become part of clinical trials of HIV medication until the 331 00:21:21.280 --> 00:21:26.280 mid nineties. Before that, they were often blocked, mostly out 332 00:21:26.320 --> 00:21:31.119 of a fear in the medical world of exposing onborn children. 333 00:21:34.119 --> 00:21:37.919 Ika was vocal about this. She was working closely with 334 00:21:38.200 --> 00:21:42.520 mostly white activists who were opening prevention and treatment centers. 335 00:21:43.080 --> 00:21:45.679 A few months before she died, she gave an interview 336 00:21:45.720 --> 00:21:49.240 to Pause, that's a magazine that chronicles the lives of 337 00:21:49.280 --> 00:21:53.960 people affected by HIV AIDS, and in that interview, Ika 338 00:21:54.000 --> 00:21:58.240 said that this centers quote came out of white, gay, 339 00:21:58.359 --> 00:22:01.959 middle class activism, because those are the people who know 340 00:22:02.000 --> 00:22:05.640 how to function in the system, and there's nothing wrong 341 00:22:05.720 --> 00:22:09.120 with that. If this had been a disease which started 342 00:22:09.160 --> 00:22:14.360 with women, nothing would have been done. So when Eka 343 00:22:14.400 --> 00:22:17.840 was diagnosed, Gigi says that their first thought was that 344 00:22:17.880 --> 00:22:20.680 she needed to get on medication right away. 345 00:22:20.680 --> 00:22:23.719 And that's when she started realizing, oh, they're not thinking 346 00:22:23.760 --> 00:22:26.600 about me yet. So even if they do come up 347 00:22:26.640 --> 00:22:28.840 with something, it's not going to be for me, it's 348 00:22:28.880 --> 00:22:32.119 going to be for a gay white man who many 349 00:22:32.280 --> 00:22:34.960 of in that community. She loved dearly. So it wasn't 350 00:22:35.200 --> 00:22:39.320 us against them thing. It was like the priorities are skewed, 351 00:22:39.400 --> 00:22:40.360 as they always have been. 352 00:22:40.920 --> 00:22:46.359 Still today, almost three decades after IGA's death, HIV treatments 353 00:22:46.520 --> 00:22:51.840 are not entirely available for sisgender women. PREP, one of 354 00:22:51.880 --> 00:22:56.160 the most effective medications for HIV prevention, is an example 355 00:22:56.200 --> 00:22:59.480 of that. PREP has been around for over ten years 356 00:23:00.040 --> 00:23:03.199 and it's prescribed to people who are HIV negative but 357 00:23:03.320 --> 00:23:04.360 at risk of infection. 358 00:23:05.240 --> 00:23:05.760 But hear this. 359 00:23:05.880 --> 00:23:10.840 Out of the three PREP medications available, one has never 360 00:23:10.880 --> 00:23:15.120 been studied in people assigned female at birth. The CDC 361 00:23:15.440 --> 00:23:19.639 warns it as critical to achieve equal PREP coverage, especially 362 00:23:19.680 --> 00:23:24.000 when cisgender women account for almost twenty percent of all 363 00:23:24.119 --> 00:23:25.760 new HIV diagnoses. 364 00:23:27.080 --> 00:23:30.480 We were losing so many of our community. 365 00:23:30.760 --> 00:23:33.640 Remember a lot of Ilka's friends were immigrants like her. 366 00:23:34.200 --> 00:23:37.719 Some of them were exiled, they had no family members 367 00:23:37.760 --> 00:23:42.440 in the US, some didn't speak English fluently. Others got 368 00:23:42.480 --> 00:23:47.040 lost in the healthcare system. This is how Carla Ilka's 369 00:23:47.040 --> 00:23:48.680 friend remembers it. 370 00:23:49.280 --> 00:23:53.359 They were neglected by the government. Nothing was being done 371 00:23:53.560 --> 00:23:58.040 because it was basically, we're dying. We're dying here, and 372 00:23:58.080 --> 00:24:00.600 no one's doing anything because look at the population. 373 00:24:00.720 --> 00:24:03.679 That's time and they were young between nineteen eighty and 374 00:24:03.720 --> 00:24:06.879 eighty six, and she had already lost so so many people, 375 00:24:06.880 --> 00:24:10.560 including her best friend mand Alita Martinez, right like yeah, 376 00:24:10.600 --> 00:24:14.119 So for her, it was I'm losing my community, my 377 00:24:14.320 --> 00:24:16.800 artists community, and I'm an artist. 378 00:24:18.359 --> 00:24:21.320 Ilka spoke for them, she spoke for her. 379 00:24:22.560 --> 00:24:24.080 I have brought to the New York City Human Rights 380 00:24:24.119 --> 00:24:26.480 Commission the concern of immigrants, of women, of people with 381 00:24:26.560 --> 00:24:29.480 ads and gays. I have made people laugh and cry 382 00:24:29.520 --> 00:24:31.720 and sink from my stage and television work. I have 383 00:24:31.840 --> 00:24:34.359 legally represented people who know very little about the so 384 00:24:34.440 --> 00:24:38.959 called justice system and still believe in it. I don't 385 00:24:39.160 --> 00:24:43.480 deserve to be ignored by governments. So I am using 386 00:24:43.480 --> 00:24:46.320 this forum to demand that governments and the powerful with 387 00:24:46.440 --> 00:24:49.720 the money get their act together in time. Go ahead, 388 00:24:50.000 --> 00:24:56.320 United Nations and governments of the world act now on 389 00:24:56.400 --> 00:25:00.960 these issues, because tomorrow is too late. Time to act 390 00:25:01.160 --> 00:25:06.080 was yesterday. 391 00:25:19.400 --> 00:25:21.919 It's a Saturday morning in May, and I've crossed the 392 00:25:21.960 --> 00:25:25.680 Lincoln Tunnel to visit Gigi, Ilga's daughter, at her house 393 00:25:25.680 --> 00:25:29.480 in Jersey City. The last time I saw Gigi, she 394 00:25:29.840 --> 00:25:33.400 and Carla told me stories about IgA and how resilient 395 00:25:33.480 --> 00:25:36.240 she was when she was ill. Now I want to 396 00:25:36.280 --> 00:25:39.920 know more about Ika's origins, and Gigi promised to look 397 00:25:39.960 --> 00:25:47.080 through some boxes of photos and letters with me. Okay, 398 00:25:47.280 --> 00:25:50.520 gg takes me to the basement, so we start going 399 00:25:50.520 --> 00:25:53.200 down the stairs and all of a sudden, I freeze. 400 00:25:55.119 --> 00:25:58.399 The poster of Ika that Gigi saw in the New 401 00:25:58.480 --> 00:26:02.000