Vivian Romero is a Sneaky Bitch. She just is. She lets you know she is a sneaky bitch five minutes into a conversation, and reminds you about it again and again.
Romero is an HIV-positive AIDS activist who works at the South Florida AIDS Network dealing with HIV/AIDS prevention and patient advocacy. She receives $11 in food stamps, $600 in social security disability checks after the government turned her down several times and is kept by the Federal Ryan White program which provides health insurance for 500,000 of the 1.2 million people living with HIV/AIDS patients in the country. Romero is also a human guinea pig for computerized medical studies, or she cleanses homes of evil spirits, whatever she can do to make a few hundred dollars on the sly so that her “benefits” won’t be revoked.
“You gotta do what you gotta do to survive,” said Romero, “The system was not prepared to support long-term survivors. This is beyond people’s integrity.”
Her friend Francisco Monterrey is also HIV-positive. He works part time at the Prevention, Education and Treatment Health Center of the Jackson Health System on Collins Avenue as a peer counselor. He also no health insurance because combined with his disability check of $1,600, he is over the maximum qualifying income of $29,4000 for the AIDS Drug Assistance Program, ADPA, in Florida. Monterrey can only hope he does not get sick.
“You can be disabled and be all the way down here or you can work and be all the way down here,” said Monterrey,52.
Monterrey came to Miami from San Francisco in 2004. He found out he was positive in 2000. He used to work as a contractor for the FAA making 60k a year. Monterrey, like Romero, is a guinea pig for computer and blood work studies. His Housing for People With AIDS program, HOPWA, stopped paying half his rent because he makes too much money. He now pays full rent and saves little money. He makes $11.50 an hour working in a tiny box of an office that reeks of stale piss and doles out more cash than what he makes.
“We pay a lot of stuff out of our own pocket here,” said Monterrey, “We deal with prevention, we’re not faith based, and most of the money goes to faith based organizations. I wanted to start a cooking class here to show people how to eat properly. We’ve gotten a hot plate.”
There is discontent amongst both activists. With the country entering a recession calling for a $154 billion economic stimulus package promoting consumer spending, the fragile funding that their individual organizations and insurance programs receive is bound to get slashed. In 2006, Miami received a 2 percent cut in HIV/AIDS funding and Fort Lauderdale more than 2 percent. That was when the economy was bad, but there were still a few somewhere who hoped that this three syllable word from hell would never be muttered.
“Right now we have $13 million in federal funds which cover transportation, doctor appointments, medical bills and hospitals,” said Michael Rajner, public policy advisor and activist for NAPWA, National Association of People Living with AIDS, “the Ryan White program is now serving 13,000 people in Broward County but there’s a waiting list.”
Michael Rajner, 37, originally from New York, works on an HIV planning council in Broward developing services for HIV/AIDS patients. Broward County is number one in the nation for new HIV cases and has 16,000 existing cases, plus 25 percent for the unreported ones according to a Center of Disease Control study conducted in 2005. The Ryan White Program is only applicable for individuals making under $30,000 or 30 percent bellow the poverty limit. The same applies for HOPWA, ADPA and other federally funded AIDS programs.
“You know what they say about war on the middle class on Lou Dobbs? Well this is it,” said Rajner, “If you have a family, if you pay rent, your car, your utilities, your gas, you can’t live on $30,000 a year. But you have to keep your money at that income level in order to retain your coverage.”
Rajner has been HIV-positive for 12 years. The former property insurance broker came to Miami in 2000 and became an activist after recovering from weighing 130lbs. After a verbal throw-down with Broward mayor Jim Naugle in the Summer of 2007 concerning the creation of single stall public bathrooms which would decrease the occurrences of male-on-male sexual contact in public and therefore, in Naugle’s mind, decrease the number of HIV rates in Broward, Rajner has become one of the more vocal activists of the area.
“We have cultures in Florida where condoms are not in the realm of possibility. We have homelessness which leads to substance abuse and we have no legalized needle programs,” said Rajner, “The state remains with an abstinence only program. They have to get real about it and fund AIDS educators that can teach about these things at an age-appropriate level.”
In 2006, Florida was awarded $10.6 million in federal funds to promote abstinence only education. Little is found for on funds for prevention or bolstering existing treatment programs which have essentially stayed the same since their inception causing a break down in the quality and quantity of programs.
“I remember seeing this Haitian lady in her house dress and slippers going to a clinic to get her prescriptions filled. The person before her got her medication, but then the pharmacy said that they were closing early,” said Rajner, “Their inability to serve clients annoyed me. This lady had an infection, a sore on her hand and it could potentially get serious. This lady had taken a bus to get there.”
As the screams of global pandemic died down in the media back in 2001, all that was left were the sporadic cries of untreated patients and struggling organizations.
“We need to take care of our own here before we can fix Africa,” said Romero, “We have people starving here, there are still stigmas here. I have the notion that I am I, but not everyone is like me.”
Romero, 45, refuses to take HIV meds and deals only with her potentially lethal stress lyme disease. She goes to an acupuncturist who relieves both by inserting needles into her forehead. A native Puerto Rican, she found out she was positive in 2000 while living in New Jersey. She took the news better than her doctor did, who offered her a valium which she immediately declined. She moved to Miami in 2004 after her father died, receiving a National Certification from the AIDS Alliance Training Corps shortly thereafter. According to Romero, had she not contracted HIV she would have remained a contented housewife working at Eckerd’s.
But while Romero considers HIV to be her superhero’s blessing/curse deal because she can sees it as a motivator, unlike other mortals who crumble under lesser pressures, she is worried that native South Floridian turnout rallying for HIV/AIDS causes and centers is minimal. It is a worry that she, Monterrey, and Rajner, who are all extremely vocal and out of state, share.
“1 in 44 South Florida blacks are positive,” said Romero, “but nobody is fighting. Everyone thought the funding would be there forever. Miami is drowning, contractors here have the balls to build multimillion dollar condos on the beach which are all empty, but there’s the same if not less funding for AIDS patients.”
Currently, 55 percent of AIDS deaths occur amongst African-American males according to a new report released by the Department of Health and Human Services and 14 percent amongst Latino males. Both are part of the largest minority groups in South Florida. But very few are rallying to their ailing bretheren.
“It’s been such a struggle. I’m not saying that people from Florida aren’t doing anything, but it’s been difficult,” said Rajner.
Monterrey has given serious thought to returning to San Francisco because of these 'difficulties'.
“It’s like we’re fighting a loosing battle if no one wants to help you,” said Monterrey, “I’m not sick now, but I have no insurance, what happens then. Ultimately it’s the disease that reigns.”
Treatment centers like SFAN and PET who stretch themselves beyond their means to help people and the children she educates give Romero hope. She hopes that during this election, Hillary Clinton, her favourite to win, will enact change concerning HIV/AIDS prevention, education, treatment and health care. However, the power to change things does not rest solely in the politicians hands,
“Si nos unieramos fueramos una fuerza increible, solo en la union hay fuerza,” said Romero, sallying forth HIV/AIDS patients of all communities to band together and call for action. But she is getting tired as well.“You [Miamian] people have four years to impress me, then I’m gone. After I get my computer courses certificated I’m going back home to New York,” warned Romero.
