Thursday, January 28, 2021

Spotlight on Bobbie Hondo: Trans Femme Dancer & HIV/AIDS Advocate (PART ONE)

By: Fernando Cerezo III, Queer Latinx Writer

The first time I saw Bobbie was on the dance floor at a New York nightclub, a nightlife watering hole for creatives and it people. I watched the sea of bodies darting their eyes, waiting for their liquid courage to kick in. Among them I saw a figure outfitted in black and pink latex, manicured nails with fingerless matching gloves and a long black ponytail held up with a headband of the same material. Her face was made up, highlighting her round Twiggy-esque eyes with hues of pink around her cheeks and temples. She was holding no drink, and her friends looked like they were trying to match her energy but didn’t yet have it in them. So, I watched her with curious enthusiasm as she grew more and more activated by the music, witnessing what I could only describe as her spirit. 

One weeknight over dinner with a handful of friends at Blue Ribbon Fried Chicken, East Village I heard “Fernando!”, called from behind me. Wearing an oversized leather jacket Bobbie embraces me warmly. She asks how I’m doing, her big eyes meeting mine from across the table as if we were the only people there. I introduce her to my bewildered friends, to whom she gives a friendly hello and a courtesy before bringing her eyes back to me. Recognizing her affinity for connection I insist we meet sometime one on one. That summer, in the Lower East Side, the two of us were dressed in all black despite the sweltering heat and walked over to the East River. Bobbie’s black wavy Joan Jett mullet encircles her fresh face. She reminds me of Brittany Murphy; skittish and eager but beaming with life. I look for a piece of myself in her to make sense of our unspoken kinship. We talked nightlife, our love of dancing, swapped dating misadventures, and realized we were born the same year. After sharing a few laughs and exchanging notes on managing adulthood, Bobbie starts to open up to me about her past. In late August, we got a chance to speak on the phone and with her permission I share it with you.

They say we’re all products of our environment, the triumphs and struggles of the children we were dictating the adults we soon become. In 2006, during a Bush era America, we find Bobbie as a curious 12-year-old in El Paso, Texas. She joined the all-girl cheerleading team and wore skirts to school against everyone’s wishes, dancing over the boundaries of the status quo. Born into a Mexican American community she was met with disapproving glares from adults, peers whispering about her in the halls, and evasion from strangers altogether. “It was unsafe to be queer, let alone be open about it [but] I wasn’t shameful. I didn’t subscribe to other people’s projections. I was going to live my life, wear what I wanted to wear, feel how I wanted to feel. Nobody was going to stop me.” Bobbie found solace at local gay bars, if not sneaking in, then peeking through the windows to catch drag performances and studying those she considered to be her people laughing, dancing and drinking, envisioning herself alongside them someday.

At 14, Bobbie earned her way into a summer dance program at Pacific Northwest Ballet School in Seattle, Washington. After days of vigorous training, Bobbie would sneak out to gay bars at night, where unlike El Paso she had an easier time getting in, despite being so young. “I didn’t know that I was being fetishized as this effeminate being and how that attracted certain characters into my orbit. I didn’t understand what a ‘tweaker’ looked like and I didn’t know what a ‘chicken hawk’ was.” It was 2009 and gay marriage hadn’t yet been legalized in most states, so homophobia permeated popular culture. These chicken hawks were men shrouded in secrecy who preyed on the young and impressionable. These were clergymen, CEOs and public defenders who had everything to lose, so in exchange for Bobbie’s discretion they offered her an affection she hadn’t felt before. One chicken hawk in his 50s, posing as a 9/11 firefighter, took Bobbie under his wing that summer, driving her around, filling her with alcohol and escorting her to “dad parties” where other men of the same breed would parade themselves with underage dates. But on their last meeting, Bobbie was lured to a bathhouse where the “firefighter” introduced her to meth. The next thing she remembered was waking up to a dozen of these tweakers abusing her 14-year-old body.

The following summer, Bobbie was back in Seattle but noticed a steep decline in her stamina during ballet class. She found herself in a doctor’s office, waiting pensively for the result of an HIV test. She can hear her mother’s warning echoing in her ears, that her behavior would only attract HIV and despair. The doctor came back with her result: positive. As the world drew silent Bobbie’s body had cemented. She looked blankly at the doctor, thanked them and solemnly walked back to class. Her fellow ballerinas detected something wrong, so Bobbie confided in them, “I have something called HIV.” After sympathizing with her, their word spread to their parents, who informed school administration and the state of Washington. It was rare for a child under 18 to be diagnosed with HIV and Bobbie didn’t get a chance to process what it all meant, the ignorance, fear and stigma. She made meaning out of the reactions from adults around her, showing concern for Bobbie with looks of terror and discomfort smeared on their faces. Amidst the dizzying chaos, Bobbie’s ballet director, Peter Boal, shared his experience of living in New York during the AIDS pandemic. “He could see me before I could see myself.” He assured her there was no better place to find access to proper care, maybe finding herself in the process. 

After getting pulled out of her program early, Bobbie was back in El Paso, sitting in waiting rooms after waiting rooms of medical professionals. Bobbie had contracted anal cancer from undiagnosed HPV and knew her body’s ability to dance was now in jeopardy. But in 2009, insurance companies and pediatricians could legally discriminate against children living with HIV/AIDS.  She had faced rejection from doctors of all kinds before landing in the office of one Dr. Rhonda Flemming. Dr. Flemming, an infectious disease doctor wasn’t trained in HIV care but after hearing Bobbie’s struggles she expressed compassion. So, Dr. Flemming trained herself in order to counsel and care for her. But HIV research was still severely lacking, which resulted in Bobbie’s new costly prescription of 12 intrusive, daily pills thought to suppress the effects of the virus. 

Bobbie returned to face her family and the changing dynamic of the house. Bobbie’s father, a local judge, took necessary measures to protect his child (and reputation) by enforcing the use of the HIPAA privacy act, restricting third parties from disclosing Bobbie’s medical records without consent. He was the most involved in seeking treatment, but he was emotionally blocked, dismissing her when she confided in him. Her mother acclimated no better. “I could be getting purses. But we have to spend money on your medication. So shut up, you don’t get to be upset,” Bobbie remembers hearing. She grew estranged from her three older siblings who only thought up ways to cure her queerness. Certain bathrooms became off limits. If Bobbie would join her family pool parties everyone would scurry out. She became a shut in to avoid facing her own flesh and blood recoiling from her. To this day, Bobbie struggles with her family’s unwillingness to talk about HIV. “I want them to say something so that I can move forward. We can grow together to get back to a time before AIDS was introduced to our lives because it does affect everyone around you.” The once curious, high spirited child had hardened and became a recluse.

The opening weekend of Twilight: New Moon, Bobbie snuck her mother’s car out for a drive. She passed the theater, flooded by her peers, drove past her high school and the gay bars she once frequented. Everything was different now. ‘We know what you have. You’re just going to be a tr*nny with AIDS,” students said to her. “Don’t talk to that person, they have the gift,” they whispered at the bars. There was nowhere to seek refuge, so to supplement her sorrow she started taking ecstasy every night. “I was driving, thinking ‘Am I going to face another year of fighting kids or am I just going to end it all now?’” So that night Bobbie made an attempt to do just that right off the nearest cliff. With the car severely damaged and her mental health slipping, her frustrated parents committed Bobbie into a mental institution without her knowing. Here she was not only encouraged but conditioned to make lying a habitual practice, to lie about her status to any and everyone she meets.

Bobbie survived the public shaming, spiraling drug use and her dance with death and was convinced she was meant for more. “No one would rise to save me until I finally decided--not to quote Donna Summer and Barbra Streisand but I’m going to--‘Enough is enough.’” She took to the then two year old website, YouTube seeking any sliver of queer history, immersed herself in gay texts like City of Night and Dancer in the Dark and, though information was sparse, she took to outlets such as “Susan’s Place” to better understand her trans femme identity. A summer film series spearheaded by queer TV channel Logo had broadcast such films as But I’m a Cheerleader, Mambo Italiano and a lifetime staple of Bobbie’s, Wigstock. The 1995 documentary highlights the irreverent talents of the New York drag festival featuring high spirited queer performers such as Joey Arias, Lipsynka and of course the Lady Bunny, and touched upon the AIDS pandemic. “That’s where I first saw these insanely vibrant personalities and their struggles as LGBTQ+ people,” she tells me passionately. While her environment was failing her, she found hope in Dr Flemming, Peter Boal and her newfound Wigstock idols. There was only one solution. Goodbye, El Paso. Hello, New York City.

-> Click here to read, "Spotlight on Bobbie Hondo: Trans Femme Dancer & HIV/AIDS Advocate (PART TWO)"

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Thursday, January 21, 2021

MAT Provides Patients with More Transparency Around Medicine Costs

By: Emma Berry, Advocacy & Strategic Alliances, PhRMA

*** Reprinted with permission from the Pharmaceutical Research and Manufacturers of America® ***

Patients have enough to worry about right now. Figuring out how to pay for prescriptions shouldn’t be another stressor. For decades, PhRMA has been committed to advocating for policies that help patients access the medicines they need, and now America’s biopharmaceutical companies are also individually expanding their assistance programs to help more patients during these uncertain times. The Medicine Assistance Tool (MAT) can match patients with resources and cost-sharing programs that may help lower out-of-pocket costs, whether or not you have insurance.

MAT is a free-to-use search engine designed to help patients, caregivers and health care providers learn more about the resources available through the various biopharmaceutical industry programs. While MAT is not its own patient assistance program, it does contain information on many of the patient assistance resources that the biopharmaceutical industry offers, including 900+ programs offered by PhRMA’s members companies to help qualifying patients, such as those who need financial support due to their lack of insurance or inadequate prescription medicine coverage.

Photo Source: PhRMA

Here is how you can use MAT to learn more about resources and cost-sharing assistance programs:

  • Go to MAT.org and select whether you are a patient, loved one or health care professional
  • Enter the name of the medicines you, your loved one or your patient are prescribed
  • Enter your personal information or that of your loved one or patient (i.e. age, location, income, insurance coverage and household size)*

After following these steps, MAT will produce search results that identify programs and resources that might be able to help you.

Additionally, the MAT site also includes links to the websites referenced in company television advertising, where information about the costs of the prescription medicines is available. These websites may include information such as the list price of the medicine, out-of-pocket costs and other context about the potential costs of the medicine. The information provided by MAT can help people learn more about the costs surrounding their medicines, as well as provide resources to help them better navigate their insurance coverage. 

*Disclaimer: Please note any information provided is not saved and is kept strictly confidential and will not be used to for any purpose other than providing the search results.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Thursday, January 14, 2021

"And We Will be Ignored No Longer" - The San Francisco Principles 2020

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

It was 1983 amid rising anger and fear over the federal government's failure to address the AIDS epidemic in the United States that people living with HIV/AIDS assembled to demand, “Nothing about us without us.” The Denver Principles were the first self-empowerment statement issued by people living with HIV/AIDS, yet nearly forty years later it still serves as the foundational platform for HIV advocacy. Now a chronic disease, HIV is turning gray. Although the face of the HIV epidemic has changed over time, our demands remain much the same: inclusion, resources, and treatment!

Authored by five long-term survivors — Paul Aguilar, Harry Breaux, Vince Crisostomo, Michael Rouppet, and Hank Trout — The San Francisco Principles seek more equitable care and services for long-term HIV survivors in the United States. These Principles address the unique concerns and needs among long-term survivors, among them ageism, isolation, and their shared history (Wilder, 2021).

The San Francisco Principles 2020

Said Hank Trout, MA, of the collective work put into the statement: "For our purposes with the Principles, we chose to define long-term survivors as those of us who were diagnosed during the fifteen-year period between 1981 and 1996, before the advent of HAART. It is we who bore the brunt of the AIDS pandemic from the very first. It is we who suffered the first diagnoses and the unmitigated fear of catching or spreading the disease; we who buried our friends and lovers and family members after watching them slowly disintegrate; we who were ignored by public health officials, laughed at by politicians, condemned by religious leaders, and shunned by our own communities; we who put our bodies on the line as unpaid guinea pigs for pharmaceutical companies who have made billions in profits off us; we who submitted to the first toxic trials and research programs; we who are still living with PTSD from all the losses and chaos of the early, horrendous days of this pandemic. And finally, we are the ones who set the standard for compassionate caring for our own community" (Trout, 2020).

The ADAP Advocacy Association has long espoused the tenets of the self-empowerment message spelled out in The Denver Principles. The following value statements are the foundational ideals under which our organization operates:

  • That the organization consistently strives to achieve them, while encouraging its supporters to do the same.
  • That the voice of persons living with HIV/AIDS shall always be at the table and the center of the discussion.
  • That HIV/AIDS advocates should welcome the opportunity to join the skills, experience and voices with others on issues of disability and access to adequate healthcare for all Americans.
  • That advocacy efforts targeted to our federal government shall always carry the needed messages applicable at the state and local level.
  • That messages and information shall be in accessible formats understandable to - and also deliverable by - grassroots advocates in any setting.

The ADAP Advocacy Association also has embraced the need for improving supports and services for the long-term survivors among us. We called attention to older adults with HIV as the Forgotten Majority. We raised awareness about AIDS Survivor Syndrome and understanding the linkages between mental health and HIV/AIDS. We highlighted Covid-19's disproportionate impact on older adults living with HIV & long-term Ssurvivors. And now, we wholeheartedly support The San Francisco Principles!

As we turn the page on an Administration that has ignored much of the needs facing the HIV community, as well as fueling stigma in this country, it is important that our advocacy efforts take a look back on The Denver Principles, while also look forward to The San Francisco Principles. Both serve to empower our efforts! 

Read the San Francisco Principles 2020.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Thursday, January 7, 2021

Focusing on Advocacy during the Darkness

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Donald J. Trump is a cancer on our democratic republic. For many years our body politic has been increasingly divided between far right conservatives and far left liberals, between the senseless talking heads on Fox News and MSNBC, and between Red States and Blue States. But Trump has capitalized on our division and hence put our fragile democracy in a very precarious position. Putting aside a global pandemic that has already taken 363,727 American souls, it is hard to map out an HIV advocacy strategy when domestic terrorists stain the very fabric of the freedoms they have taken for granted by their attempted coup yesterday.

Photo Source: VICE

January 6th is a date which will live in infamy; it reminds us all that we are not immune from tyranny. Also, Trump's distain for public health and science has fueled the Covid-19 disaster in this country. It has disproportionately impacted marginalized communities already plagued by growing health disparities. Likewise, Trump spewing out his anger, hatred, and misinformation has led to more stigma for many of our communities.

It might seem hard to focus on advocacy during the darkness, but it is necessary. As such the ADAP Advocacy Association welcomes the impending return to a science-based approach to public health, starting on January 20, 2021. We have much work to turn the tide on the vitriol advanced over the last four years. We stand determined to do it.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.