“Whatever you do, don’t make me boring” – Freddie Mercury
Tomorrow night marks AIDS Services of Austin’s 3rd annual Freddie for a Day event! This event is meant to serve as a night to commemorate the life of the lead vocalist for the band Queen, Freddie Mercury. Mercury is known for being many things: a singer, entertainer, generous spirit, and for having contracted and eventually dying of complications from AIDS.
Freddie Mercury never liked to discuss his diagnosis – he hardly even discussed it with his long time partner, Jim Hutton. Despite never discussing his status, there had been rumors for years about his illness leading up to his death. Although he never shared the details of his health with his band mates, they were aware that he was ill. Because of this, they stopped touring and slowed down on time spent in the studio. During Mercury’s final public appearance in February 1990, his band mate Brian May, had to accept an award because Mercury was too ill to do so. After that, he spent all of his time at home coping with his illness. Mercury publicly announced having AIDS on November 22, 1991—and a little more than 24 hours later, he passed away.
Mercury hated to discuss his illness because of what people would think and the stigma that come with this status. And over 20 years later, this stigma is still around. Many people still think being diagnosed with HIV is a death sentence and do not know how to discuss it. Knowing that this disease is most often transmitted through sex or drug use creates a perception that being positive means you have no morals—which is false. This stigmatization not only impacts people living with HIV, but people who don’t have HIV as well. People may avoid getting tested, avoid taking medications, or avoid asking their partner to use protection.However, like turning your car radio up louder when you hear a funny engine noise, ignoring a problem will not make it go away. If you are at risk for contracting HIV, not getting tested and not knowing your status will not solve anything. That’s why one of ASA’s primary goals is to fight stigma and indifference, which allow HIV to spread and prevent people from seeking care. We also support people to learn how disclose their status and live open lives, free from judgment.
By joining us at Freddie for a Day, you can help us further the cause by making people aware of their risk, providing free HIV tests, and supporting services locally and internationally for people affected by HIV and AIDS. Not only does the event support AIDS Services of Austin, which works with individuals affected by HIV in Central Texas through many different programs and services, but it also supports The Mercury Phoenix Trust.
In 1992, The Mercury Phoenix Trust was established to commemorate the memory of Freddie Mercury and help use his notoriety and generous spirit to raise money to fund projects battling HIV and AIDS worldwide. Over the past 21 years, MPT has raised over $15 million to finance over 700 projects in 57 countries! Their main event, Freddie for a Day, is just another way to celebrate Mercury with a bit more flair and fun by dressing up as our favorite Queen front man. Freddie for a Day is celebrated on Mercury’s birthday, September 5—but MPT encourages anyone who wants to celebrate to do so on any day of the year. The many ways that FFAD has been spent around the globe includes musical performances, ‘Mercury’ margaritas, flash mobs, and marathons in his honor.
ASA will be celebrating Freddie for a Day in our own way tomorrow night! We will be at The Austin Beer Garden Brewing Co. from 9:00-11:30 pm in an open and spacious setting with delicious food and cold beer listening to the tunes of the Queen cover band, Magnifico. There will be a Freddie lookalike contest, giveaways, and mustaches to go around! The suggested donation of $10 goes towards supporting the fight against HIV and AIDS through AIDS Services of Austin and The Mercury Phoenix Trust.
The relationship between healthy eating and a healthy life is often overlooked by people living with HIV. Between concerns about getting case management, health care, and medicine, nutrition gets placed on the back burner. In addition, the cost of buying healthy food can be hard to justify when you are scraping by to afford health insurance, prescriptions, rent, and utilities.
That’s where ASA’s Medical Nutrition Therapy (MNT) Program comes in. About one-third of our food bank clients use the MNT program to establish realistic goals for their nutritional health. Our registered dietitian (RD) Christine Marquette works with more than 80 clients yearly.
“Some clients are homeless and therefore very food insecure which has caused many health problems,” Christine explains. “So our program is helping to meet their basic needs. Others may just have had a setback and need some help getting their nutritional health back on track.”
Before clients can access MNT services, they must complete a nutritional risk screen (which looks at their medical history, current medical needs, and current eating habits), and they must have received an AIDS diagnosis or be showing symptoms. Christine helps clients with issues ranging from weight-loss or weight-gain to managing other medical needs such as diabetes.
“Once the client is scheduled for an initial MNT appointment,” Christine describes, “We go through a detailed assessment including a measurements of body fat, hydration, and muscle mass; questions about the client’s medical history, medications, recent lab work, social history; and understanding their access to food, what they eat, and how often they eat.”
After this initial 90 minute assessment, Christine determines if the client needs supplemental nutrition, and if so, what type is most appropriate. The client can then pick up these supplements with every food bank visit, which includes a weigh-in to monitor their nutritional status. In order to continue receiving supplements, MNT clients must attend follow-up appointments.
“Our goal has been to have a show rate of more than 75%,” Christine explains. “Historically we have been in the 70 – 80% range, but for three months this year, we have achieved a show rate (or “retention in care”) of over 90%!” In addition, Christine has recently seen two elderly clients (in their 70s) graduate from the MNT program.
Interacting with clients is Christine’s favorite part of working in the MNT program at ASA. “They are all such unique individuals and many have overcome so many challenges & obstacles, both in life in general and in their health, it really makes me appreciate my own life circumstances and health. My goal with each client is to do the best assessment I can to help them set their own realistic goals regarding their nutritional health. I am very happy when clients graduate from the program and feel a sense of accomplishment that they can handle their nutritional needs without me.”
Christine recently had a client re-enroll in the MNT program after being released from prison. In addition to a history of drug and substance abuse, this particular client had a history of missing appointments. Unfortunately, due to the high demand among clients, the program has a strict three strikes rule: Three missed appointments means being unable to continue receiving MNT services at ASA.
“When the client re-enrolled, his weight was at 88% of his ideal body weight,” Christine recalls. “He kept his initial appointment and started coming to food bank every two weeks for his supplements and to get his weight check. He managed to stay sober for 5 straight months and got his weight up to 90% of his ideal body weight! Although he did have a small relapse with drugs and alcohol, causing him to miss one food bank week, he made his follow-up MNT appointment and has gotten back on track with sobriety. He has also joined a gym and is doing yoga and swimming twice a week, in addition to following a healthy eating plan.”
Since our registered dietician is only available part-time for the MNT program, we also strive to provide nutritional education classes once a quarter, which are open to all ASA clients. “Topics we have covered in the past include what to eat if you have high blood pressure, portion sizes/how to serve a healthy plate, as well as cooking demos with various foods (grains, proteins, etc.).”
Learn more about these demos in our blog post: CAFB Class Builds Cooking Skills
For all the progress made in the fight against HIV and AIDS, the largest and most constant struggle has always been with stigma. Greg’ry Revenj knows all too well how even someone who loves you can fall into the mentality perpetrated by stigma.
“[My grandmother and I] were in LA right before HIV Plus magazine came out,” he remembers. “We stopped to get food, and my grandmother ordered a soda. I asked her for a sip, but when I gave her the cup back, she had a funny look. ‘Are you sure it’s okay for me to drink after you?’” She was worried that she might get HIV from just sharing a drink with him.
“We’re going to stop stigma through knowledge,” he explains. “We aren’t doing enough to get the right message out there.”
Greg’ry made sure his grandmother understood how HIV was transmitted and emphasized the difference between HIV (the virus) and AIDS (the condition caused when the immune system is compromised). After HIV Plus magazine came out with Greg’ry on the cover, he launched “Educate Yourself,” a tour across Texas to talk to small LGBTQ organizations, HIV organizations, and schools. By telling his story, he was able to demonstrate that HIV is not the death sentence it once was.
Showing people HIV is not the end meant living his life publically.
Greg’ry finished the final leg of his tour at the Q Austin, ASA’s Mpowerment program. Soon after, he was invited to speak at the Hill Country Ride for AIDS’s (HCRA) opening ceremonies. “In 2014, when I was doing intake at ASA and getting care at David Powell, HCRA was out there raising money for me. So it was cool to see the other side of it in 2015.” Greg’ry felt incredible being able to speak in front of so many people involved with the cause, not just his generation, but even people who had lived through the AIDS crisis of the 80s. “To me it was a thank you. You guys raising money might not see the end result, but I am the end result. You really saved my life.”
Looking to the future, Greg’ry wants to do more for the community. To that purpose, he started a support group called “Talk Positively,” which meets monthly at an Austin restaurant to just talk about what it’s like to be positive. While the dinner is sponsored by the pharmaceutical company Gilead, Greg’ry emphasizes that the group is a safe place to learn without being sold anything.
“We talk about what we want to talk about. What this community needs. What they feel the community needs.” Greg’ry feels that the gay community does not have enough leadership, so he hopes he can provide that for the Austin community.
With all that he has gone through, Greg’ry feels fortunate to have a good head on his shoulders. While he describes his past self as feeling invincible, he has since become a cautious person who thinks things through before acting.
Before he got into care, before he isolated himself in Chicago, and before he even knew his status, Greg’ry had been on the verge of starting a romance with a young man named Nathan. Overwhelmed by learning he had HIV, Greg’ry stopped talking to him. When Nathan finally demanded to know what had happened, Greg’ry told him, unsure what his reaction would be.
Nathan’s response: “You shouldn’t have had to go through that alone.”
They have now been together over a year. “He wanted all the information,” Greg’ry explains, “And wanted to be by my side.” Although at first, Greg’ry didn’t want Nathan to be at risk, he now he knows that serodiscordant couples have a multitude of options to protect themselves. “It’s nice when you have someone who cares for you completely.”
Throughout his journey, Greg’ry has battled misinformation and stigma, educating himself, teaching his loved ones, and even helping strangers connect to face HIV together. “If I can give knowledge to anyone, men or women, gay or straight, that’s what I want to do.”
Born in Indianapolis, Indiana, Greg’ry Revenj moved in with his grandmother in Basin, MO at a young age. Much of his curiosity and creativity came from living in this small mining town. An outdoorsy kid, he often climbed mountains, rode his bike, swam in creeks, and spent his winters sledding. In addition, his grandmother instilled a strong ethical and moral code in Greg’ry to which he credits his drive to do good.
“It’s important to live your life with purpose and be careful how you present yourself,” he explains. “Treat people the way you want to be treated.” Building on Greg’ry’s already creative nature, his grandmother taught him how to think outside the box while staying true to himself: “Dance as if no one is watching.”
Greg’ry always wanted to be a fashion designer, so after high school, he attended The International Academy of Design. However, he often clashed with his teachers’ prescriptions and longed to break out and do what loved. Cutting ties with the school, he renamed himself Revenj and launched his own clothing line and website in 2008. Being on his own, he learned how to succeed quickly, establishing a new brand identity and image.
After spending five years in Seattle, he moved to Dallas where his grandmother was at the time. He soon realized the city simply didn’t suit him. Rather, he felt himself being drawn to another Texas town he had heard of: one with a great music scene, hipsters, and weirdness. Greg’ry moved to Austin in 2013 to continue on the next step of his fashion career.
However, his passion had to take a back seat after he learned he was living with HIV.
“I want to put my time and effort into making a difference,” Greg’ry insists. When he was first diagnosed, he was advised to tell only people he was close to, only when he was comfortable. However, even then, he knew he had to tell his story. “Before, I didn’t feel like I had a purpose or a driving force. Even though my original plans [for my clothing line] got derailed, I think it’s for the better.”
Soon after, Greg’ry was chosen to be on the cover of HIV Plus Magazine. Before the issue hit stands, he had no idea what waited in store for him. A friend who was also featured in the magazine, Chris Richey, took him aside to give him a warning: “I can’t change your mind. I know you want to be the new face of HIV, and want to make a difference and do good. But when this magazine comes out, be ready for it.”
To Greg’ry, that was the best piece of advice he could have received.
In just a few weeks, he was flooded with social media followers. Strangers wrote him messages: “You inspired me to get tested.” “I just found out I’m positive and know I’m not going to die.”
Greg’ry still talks to his grandmother every day. “When I came out as gay, she had to learn all the gay jargon. When I came out as positive, she had to learn all the HIV jargon. She was scared when I first told her I was positive. But all she wanted was honesty—to know if I was healthy or sick.” Throughout the past year, she has continued to support him, helping him manage both the virus and being a public figure.
While Greg’ry knows that he isn’t the typical person living with HIV—he is well employed, has health insurance, never misses an appointment, and makes sure to think through even decision he makes—he hopes his experience can give both knowledge and hope to someone else. He has now been on treatment for more than a year and has been virally suppressed since November of 2014. “I didn’t even realize how bad I felt before I got on the medication. I sleep better now and have more energy.
“I feel normal again.”
“I don’t think I liked myself before my diagnosis.”
At just 25 years of age, and a little over a year after he found out he had HIV, Greg’ry Revenj has taken on the world, committing himself to educating people about HIV. After he made the cover of HIV Plus magazine last year, he started a tour of Texas called “Educate Yourself,” in order to tell his story, talk about HIV, and help people understand that HIV is not the end. However, Greg’ry wasn’t always so open about his status or optimistic about his life.
“When I first found out, I just shut down…. I was not as careful as I am now. I felt invincible. I guess that’s the mentality everyone has when they are young.”
In December of 2013, Greg’ry started feeling sick. He was in a new relationship and trusted his partner, but he was constantly exhausted and weak. A quick google search proved to be devastating. “It could have been cancer or HIV,” he says. “I thought, ‘Either way, you are going to die.'”
Not ready to face his fate, Greg’ry waited until February to purchase an OraQuick test. After it came up positive, Greg’ry came to ASA for a confirmatory. “You have to deal with it if this is going to be your life now,” he recalls telling himself. The second rapid test at ASA came up positive, as he knew it would, and as he waited a week for the confirmatory test results, he contemplated the idea that he was now living with HIV.
On an intellectual level, Greg’ry knew his status, but he still hadn’t processed what it truly meant to live with HIV. With a long trip to Chicago, Greg’ry cut himself off from the world, taking the time to focus on the situation, often sitting by the water to think. “I was very sad,” he recalls. “I felt like I was going to die because of all the misinformation out there. I started asking if I had lived life to the fullest: ‘Are you happy with who you are? Have you made a difference?’ I felt like I hadn’t done anything worthwhile yet.”
When he returned in Austin in June, he had done a little research. He knew taking pills were a possibility, but he still grappled with the severity of the disease. “I was teetering. I could die; I could not die.” Through ASA, Greg’ry was connected to David Powell clinic, where he posed the ultimate question to the doctor: “What are the chances of survival?”
The doctor had nothing to say to that. In fact, he was confused by the question.
For the first time, Greg’ry realized he could live a full, complete life with HIV. His life was not over. In fact, the most mind-blowing part of the visit was when the doctor finally asked him, “Are you ready to start medication?”
For many people of a certain generation, HIV meant a death sentence. The drug AZT was the only available treatment for many years, but the side effects were legendary, with many patients allegedly choosing to pass away from AIDS rather than live with the side effects. However, all that changed with the introduction of protease inhibitors in the mid-90s: effective medications that could keep the virus at bay and bring back the immune system. Today, anyone infected with the virus can lead a long, healthy life with treatment.
That’s the message Greg’ry hopes to spread far and wide to his generation. “I’m the self-proclaimed new face of HIV. Now that I have a voice, I have to use it. I have to do something with it. How do I tell people they are not going to die?”
He could not have predicted the response he would get.
When the Capital Area AIDS Legal Project (CAALP) was first founded by Kirk Rice, it presented a novel solution to an invisible problem. People living with and affected by HIV finally had a resource to turn to for legal advice, representation, and referrals. Over the years, AIDS Services of Austin built up a pool of over 185 volunteer lawyers from around Austin.
At the same time, another organization, Volunteer Legal Services (VLS) was offering legal assistance in Austin to low-income people. While ASA offered something different and more tailored to a particular population, it became hard to stay organized and keep up with increasing demand. ASA soon started referring clients to VLS, and last year, their partnership shifted to a new model.
Now, ASA contracts with VLS to run the CAALP program. A VLS staff members (including attorneys or case placement coordinators) work at the ASA offices during a portion of each weekday to provide services, working with intake to confirm clients meet eligibility guidelines. The in-house attorneys can then either help the client themselves or refer cases to volunteer attorneys.
“Sometimes the hardest part of the job,” says Sue Campion, ASA’s Chief Programs Officer, “can be follow up, especially for clients focused on health issues. Staying organized can be challenging.” In order to make sure clients receive the help they need, VLS staff often work with case managers to stay on top of emerging issues, not just with client but with the community. For instance, Austin’s housing issues have become increasingly complex as property rates near the city increase. For those clients receiving housing assistance, it may be necessary to find accommodations outside the city, which can be daunting for someone who has lived in Austin their whole life.
Not only do VLS staff understand the economic, medical, and emotional issues people living with HIV may be facing, they also know how important it is for people to stay educated. They offer regular clinics for people affected by HIV, including family members or loved ones of people living with HIV.
In order to receive services, clients must be living within 187.5% of the federal poverty level. However, they do not need to be case managed at ASA. In fact, referrals come to VLS not only through ASA, but through the Wright House Wellness Center, Project Transitions, CommUnityCare’s David Powell Clinic, and Waterloo Counseling Center.
The process starts with an intake form. Many of the people inquiring may never need to engage the services of a lawyer. Hundreds of clients are able to get their questions answered with free legal advice. When clients may need more than just advice, the VLS staff will determine whether they have legal recourse or not.
For staff attorney Jonathan Buck, one challenge is getting together the large amount of paperwork needed. “With clinics, oftentimes the case isn’t ready to be referred to an attorney. But if we think a case is likely to make it through, we will write a memo to send to our volunteer base to get them interested in helping.”
“A lot of the cases we help with,” Jonathan explains, “are the most basic things: getting social security benefits or disability income, keeping clients housed.” Many clients living with HIV may have other issues that require them to get certain forms in order. “The face of HIV and AIDS is so different than it used to be. There is this additional layer of having all these health problems in addition to HIV. And some people may not be on the best terms with their family because of the stigma associated with HIV. If they don’t have the right paperwork in place [before a crisis], it won’t be their partner making decisions for them.”
Jonathan came to CAALP after practicing law for 10 years. During those years, he volunteered whenever he could. “Those were the cases I got the most out of. I got to help someone that really needed the help and appreciated the help.” For many young attorneys, working at a law firm might mean never visiting a courtroom and or spending years on a case that gets settled out of court. Volunteering provides an opportunity for them to present cases in front of a judge and see happy clients as cases close successfully.
Jonathan also enjoys the challenge of helping people and connecting with them, getting them to remember him and understand the importance of coming back to follow up. “You have to communicate. You have to be empathetic to get them to put their guard down.”
While the job might seem stressful to some, Jonathan insists it is not. “It’s fun! It’s nice to know that I can sit for 10 to 20 minutes with someone and make a big impact in their lives. Every day I have the chance to help people with the knowledge and skills that I have.”
If you think you qualify for VLS’s services and are in need of legal help, contact them at 512-406-6173 or email@example.com.