Veteran AIDS Worker was Inspired by Brother’s Death

By: Andrew Leins

When Juan Casuso found out that his brother Gabriel had AIDS twenty one years ago he wanted to learn as much as he could about the disease. Juan looked up articles and spoke with the nurse who came to visit Gabriel almost every day. “She told us the things we needed to know, like what precautions to take,” said Casuso.

Gabriel was diagnosed with AIDS in 1986 and he participated in a clinical trial for AZT, a drug that was being introduced at the time to treat AIDS. Gabriel did not respond well to the drug, he became anemic and there was not much that could be done for him. “Eventually he came home so we could make him comfortable,” said Juan Casuso.

Casuso has worked at the University of Miami’s AIDS Clinical Research Unit (ACRU) for twenty years now, where he is the screening director. He decided to get into the field of AIDS research after his brother died, because he wanted to learn more about the disease and see if he could help.

Casuso reviews patients medical history and ascertains if they qualify for clinical trials at the research unit. He also sits down with the patients and talks to them about the disease. “The main thing is to give them information; there are still a lot of misconceptions out there,” said Casuso.

Patients at the ACRU undergo clinical trials for medications yet to be approved by the FDA or for trials involving new uses for existing approved drugs. They also receive medication while they are undergoing the trials. “For the patients its like a regular trip to the doctor’s office, the nurses attend to them and the doctor’s come to see them.”

Casuso, typically sees about three people per day for screening. He sees an ethnic mix of applicants. “I see people of all different races, ages, some older, some younger. Miami is an ethnically diverse place, so you get ethnically diverse patients.”

“When I started here, this was the only place in Florida where people could go for treatment.” Now, there are a lot resources for HIV/AIDS.”Casuso also got involved by going out to the community and trying to educate people about AIDS.

Juan believes that the tide in the fight against AIDS started to turn when it became apparent to politicians that the disease was affecting the general population and not just minorities.“There was a lot of misinformation, and people were not very receptive.” “I remember at the time that there was a big debate in the country about using the word ‘condom’ on television. You couldn’t say it. People didn’t want to talk about AIDS.”

As AIDS began to infect different and larger populations, more people where aware of the disease and perhaps knew someone who had it. “They were maybe not infected but they were affected by it,” said Casuso.

Even with today’s resources Casuso still witnesses a lot of public ignorance about AIDS.

“People tend to think that because there are drugs to treat the disease that they’ll be able to live with AIDS and be fine. But, there are side effects to the drugs and sometimes they don’t respond.”

“I have young people coming In often who are newly diagnosed, we aren’t doing enough to educate the public about prevention.” said Casuso.

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Survivor

By: Monique Mattiace

Fort Lauderdale resident Damaries Cruz, 37, contracted HIV from her fiancé at 21-years-old in 1991. No medication and 17 years later­, Cruz calls herself a walking vitamin as she lives her life helping others.

“My father is the King, I’m untouchable,” Cruz tells herself and others.

While living in Puerto Rico at 18-years-old Cruz had her first HIV/AIDS test, which she tested negative to, before marring her ex-husband. At 21-years-old Cruz was divorced and getting ready to marry her new fiancé. As Cruz and her fiancé were about to have unprotected sex he ensured her he tested negative to HIV/AIDS.

A year after having intercourse with her fiancé, Cruz suffered from severe yeast infections and non stop bleeding between her menstrual cycles. Her doctor, who was confused and concern because none of the treatments were working, thought she had cancer.

“I think you may have cancer. We have to do a biopsy. I know you don’t have HIV /AIDS but lets test you for it anyways just to rule it out,” said Cruz reenacting what her doctor told her.

On Nov. 23, 1991, Cruz had what she calls her second birthday. Her doctor in Puerto Rico gave her one year to live when she tested positive for HIV. All Cruz remembers that day is the room spinning and telling the person who gave her the results to check again. Cruz traveled to New York six times to get tested before she accepted the fact she had HIV.

Later that day on Nov. 23 when Cruz got home and told her fiancé she tested positive for HIV she learned he knowingly had HIV/AIDS when he slept her that day a year ago.

“I knew I was going to take someone with me, but I didn’t know it was going to be you,” Cruz said her fiancé told her when she told him she was positive.

Cruz decided to forgive her fiancé and marry him anyways. A week before the wedding she caught him sleeping with another woman on their bed. Cruz called of the wedding. Two years later he died from HIV/AIDS.

That whole year Cruz suffered from severe depression. Her mother cleaned her and spoon fed her after she refused to move from her bed to get up and use the bathroom. Cruz imagined herself thinning away, pale and all the other stigmas associated with HIV/AIDS. But one day as she looked at herself in the mirror, it finally hit her. She looked the exact same way as she did before she contracted HIV, she was Damaries Cruz and nothing had change. Except that now she had a chronic disease she had to live with for the rest of her life.

It was around that time when Cruz’s life took a 180 degree turn after she decided to go on a spiritual retreat. On the retreat a preacher called her out amongst the crowd. According to Cruz, he said someone in the audience tested positive for HIV. He said it was a woman and gave her age and the date she was diagnosed. Other people stood in the crowd and tried to claim the blessing. He said no to all of them until Cruz stood up and said, “It’s me.” She walked up to the preacher and he prayed for her and told her to help others.

“He saved my soul,” Cruz said.

“If it wasn’t for that I wouldn’t be here today,” Cruz went on to say.

Cruz moved to Florida to treat alcoholism. She has been hypnotized three times but finally she conquered her battle and is a nine year recovering alcoholic.

Cruz, who worked at the Broward Health Department, spent four years going to Florida’s five main jails to speak to woman who were waiting to see their husbands or boyfriends. She taught them the basics of HIV and made them aware that their men are having sex with other men while locked up. After all, her fiancé contracted HIV/AIDS while in jail and in return gave it to her. She also spent time helping inmates deal with HIV/AIDS and would receive multiple calls at 3 a.m. from the jail when one would try to commit suicide.

Cruz also visited Florida International University and other local schools where she educated students on HIV/AIDS and shocked them when she told them she had the virus.

Now Cruz is starting a new job at the Miami-Dade Health Department as the Senior Health Director.

Two years ago Cruz acquired AIDS when her t-cells dropped to 163. Once an HIV patient’s t-cells drop below 200 they’re considered to have AIDS. Her doctor and friends thought once she received AIDS she would finally go on medication.

“Give me three weeks, I’ll be back,” Cruz told her doctor. Three weeks later Cruz did come back with an increase in her t-cells at 250.

“It’s not the quantity of life, it’s the quality,” Cruz said when referring to why she doesn’t take medication.

Cruz doesn’t tell others not to take medication for the virus. She said it is her personnel decision and that everyone’s body and immune systems work differently. She looks at medication as toxins coming into her body. People that she knows on medicine are always sick and no doctor can promise that she won’t have any side effects. So, she chooses not to take it.

Instead Cruz takes Chinese herbs, supplements, vitamins and protein shakes everyday. Her diet consists of fish, lots of greens and whole grains, and her doctor fully supports her.

Cruz may have been diagnosed with AIDS but she will not claim she has it. Besides her diet, her state of survival is mind over body.

Cruz goes to an acupuncturist every week and sees a hypnotist where she does exercises visualizing the virus going down and her t-cells coming up. Everyday Cruz puts on a smile. She believes her attitude plays a huge role in her health. “I try to stay happy,” Cruz said.

Cruz considers herself a little kid. She takes pleasure in the small things in life. She loves walking, reaching out to people, television, movies but most of all she loves sleep.

“I’m tired all the time but most of the time I try not to think about it,” Cruz said.

Overall, Cruz is a normal happy healthy woman in a 10 month relationship with a man she loves. She lives in an apartment, and like everyone else she hates doing laundry of which she has to share the utilities with everyone on her floor.

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Family of Deceased Son Keeps His Memory Alive Through AIDS Awareness

By: Monica Gajardo

Within minutes of meeting Armando Larrea Sr., he is sure to hand you an AIDS red ribbon pin. He carries at least one in his pocket anywhere he goes. It is his way of spreading AIDS awareness to all the new people he meets. Especially since he knows firsthand what it is to lose someone you love more than yourself to the devastating disease.

Armando Larrea Sr. and his wife Enriqueta Larrea endured the loss of their eldest son Armando, “Mandy,” in October 1993.

“My mother wanted me to tell everyone Mandy was sick with a liver disease,” says Enriqueta. But that was very far from the truth. The truth was: Mandy was gay and HIV positive at the mere age of 26.

As Armando and Enriqueta are devoted Catholics, it was very difficult to first deal with that fact that their son was homosexual, then later to discover he had contracted the HIV virus. “He told us he was gay a couple of months before he told us he was HIV positive,” say Enriqueta. As hard it was to cope with both of these situations, Enriqueta knew she could not and would not turn her back on Mandy, as mothers often did at that time when they discovered their sons were in Mandy's exact situation. “To be sick like Mandy was and then to have society and even your family discriminate you? I was not fair,” says Enriqueta, "I guess it is also just the mother in me."

At the time Mandy discovered he was HIV positive, society was at a much different understanding about the virus and, moreover, about AIDS. Ignorance and fear led only to stupidity and discrimination. Enriqueta explained how people did not want to touch other people who were infected with AIDS. “It’s just the way it was,” she said.

In 1982, the Center for Disease Control and Prevention formally established the term Acquired Immune Deficiency Syndrome, AIDS, and initially identified four “risk factors”: Male homosexuality, injection drug use, Haitian origin and hemophilia A. It was not until a whole year later that researchers and doctors realized this disease can be contracted by anyone and everyone, gay or straight, male or female. Well, a whole year later the number of known deaths in the United States due to AIDS nearly doubled - jumping from 2,304 to 4,251! AIDS truly became a worldwide, rapidly spreading epidemic.

Sadly, this epidemic claimed Mandy’s life when he was only 32 years old. But although he fit the typical “stereotype” for an AIDS victim at the time, his father and mother devoted themselves then and today to educate individuals about the truths of contracting AIDS, letting people know it does not stop at just gay men... AIDS truly has no boundries. “It takes one time, it is one mistake, and that is it,” says Armando.

Instead of losing themselves in tears and sorrow after Mandy died, Armando and Enriqueta decided to create something positive out of what they experienced with their eldest son. Enriqueta explained how the last three or four months before Mandy died were the hardest as then is when he was most ill. It was also then that she and her husband realized there was a lot of support out there for AIDS patients themselves but hardly any true emotional support systems for the people who surrounded these AIDS victims like their mothers, their fathers or even their partners. Who was there for them? Who could possibly understand their suffering? As the average person can probably fathom the pain and heartache of losing a loved one to such a dreadful disease, no person can truly understand it until they have experienced it themselves.

As such, Armando and Enriqueta decided to become active in their community and make a change. They are among the founders of the AIDS Parent Support Group which began at St. Augustine Church located in Coral Gables and also expanded to many other parishes throughout South Florida. These groups met once a month and provided parents and relatives with emotional support, comfort, and motivation - these of which often ran low quickly during such trying times. These groups tried to move aside from the tears and despair of dealing with their sick loved ones and instead moved on to focus on positive aspects.

One of their greatest accomplishments was the completion of a quilt that embodied pictures of loved ones who were lost to AIDS. Today, the quilt is used in seminars, speeches, and meetings about AIDS all throughout South Florida.

Although these types of groups do exist, one thing still remains apparent – AIDS awareness and education is lacking. Thanks to medication, AIDS sufferers are living longer lives, but the true point is: Rather than learning to live with this disease, we need to learn to avoid and conquer it. It cannot just be treated as some kind of cronic illness.

Mercy Hospital is the only local hospital which actually has a floor dedicated to AIDS patients – the 8th floor – “Special Immunology Services.” Patients are able to come in and out for their treatments and medications. But aside from Mercy - Baptist, South Miami, nor Homestead hospital have such a floor or division as they do for cancer, diabetes, addiction treatment services, etc.

Moreover, none of these local hospitals provide AIDS education and prevention programs for the public, only “self-studies” for employees.

“Patients are admitted if need be, but through their private doctors,” says Jessica, a lead nurse in South Miami Hospital’s Outpatient Department, “we treat them for whatever is wrong with them at the moment.”

Today, Armando Larrea tells people he meets there is only one true medication to prevent HIV/AIDS… “It’s an aspirin,” he says. “Just one. Hold it between your legs and don’t let it drop… that’s how you are safe.”

He speaks of abstinence.Whether teaching today's society to practice abstinence or teaching them to have “safer” sex – one thing remains true, we must continue to teach. An educated society results in a precautious, responsible one. Let's spread awareness and education - NOT AIDS.

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Insufficent Media Coverage Compels HIV Activists to Speak Out

By: Anthony Navas

Jesse Sanchez is trying to get on the MTV reality show “The Real World.” He has already gone through two auditions and is waiting to go through one more. Unlike other people who want to be one the show for fame, he said he wants to make viewers aware of HIV in South Florida.

Sanchez, a 19-year-old student at Miami-Dade Community College, has been HIV positive since last March. He said he wants to appear on the show because it will remind viewers that South Florida has a problem with HIV/AIDS.

But he doesn’t want people to know him as just a young man with a disease.

“A disease cannot define me,” Sanchez said.

His main dream is to be a news correspondent. His interest in journalism began when he was in third grade when he saw Jim Berry, a sportscaster, at his school. He has pursued that dream. He now works for Channel 4 as an associate producer.

For Sanchez, there isn’t enough media coverage and people are still getting sick. There are a lot of misconceptions out there, Sanchez said, which makes people not careful in their sex lives.

“People think it’s like you take one pill and you’re okay,” Sanchez said.

Sanchez is not on any medication. His T-cell count has not reached dangerously low just yet. He said a number of factors can bring it down, including stress. But Sanchez isn’t worried about going a career where stress is high when it comes to deadlines and competition to find good stories.

“In a weird way, I’m not stressed because I’m doing what I love,” Sanchez said.

When Sanchez found out he was positive for HIV, he said a tear ran down his face and wondered what he did to deserve it.

“There is not a day that goes by that you don’t say ‘why did this happen to me’,” Sanchez said.

He said he received support from family and friends but dating can be difficult. He likes dating older men who are accepting of the disease. However, he remembers meeting a man online and when Sanchez told him he was HIV positive, the man said he just wanted to be friends.

Ever since he contracted the disease, Sanchez said the experience has been him more driven to succeed as a journalist.

“I feel like I have to work faster,” he said.

Sanchez said he hopes that if he gets on “The Real World,” people will not only become aware of HIV/AIDS in South Florida but also realize that the disease cannot restrict someone of accomplishing things.

And while Sanchez hopes to get his message across on MTV, Michael Rajner is reaching out to people living with HIV/AIDS through activism.

Rajner, who has been HIV positive for 12 years, is a member of the National Association of People with AIDS, a non-profit organization that is out to help people with the disease. Rajner is planning on participating in the 2008 National Conference on African-Americans and AIDS, which will inform patients on how to get heath care and encourage them to become more active on public policy.

Rajner said he feels there isn’t enough courage on AIDS in South Florida.

“We can do much better,” Rajner said.

He has also spoken out against Fort Lauderdale Mayor Jim Naugle for his remarks against the gay community. Last August, when Naugle and other conservative members held a press conference saying that gay men were fueling the spread of HIV/AIDS in the city because they were having sex in public restrooms, Rajner yelled, “You are demonizing people and it is wrong.”Rajner said what the mayor was doing had nothing to do with public health issues but was an attack on the gay community.

“It was like propaganda,” he said.

Rajner, 37, has gone through several medications that did not sit well with his body. He said some medicine made him feel nauseous. Doctors had to remove his gall bladder at one point because it became inflamed.

For Rajner, it was about finding the medicine that was right for him.

“It’s very individual,” Rajner said. “My experience is not the same as everyone else’s.

Rajner said he has been on the same medicine now for three years. He has developed asthma. He used to ride his bicycle and rollerblade. But now he finds himself out of breath easily.

“You start to wonder if its age or AIDS,” Rajner said.

Rajner, who was born in New York City and moved to South Florida in 2000, had a Catholic upbringing where homosexuality was looked down upon.

“I come from a family that’s religious and it’s not accepted,” Rajner said.

When he told his family he was gay, his father accepted it but his stepmother reacted with hurtful remarks, Rajner said.

And when Rajner found out he contracted HIV, he said he accepted it. He had lost friends to the disease and his grandmother, mother and aunt to cancer when he was 13 years old. Ever since then, he said he has been activist for social cause.

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Reduced Financial Assistance from Government Leaves Those with HIV Struggling

By: Alex McAnarney

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.

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