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. 

Tuesday, December 15, 2020

Second-Annual Client-Level ADAP Report Released

By: Marcus J. Hopkins, Policy Consultant & Guest Contributor

The Division of Policy and Data in the HIV/AIDS Bureau (HAB) at the Health Resources Services Administration (HRSA) has released its second annual Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report (HRSA, 2020). This report covers client-level data about the ADAP program for calendar years 2014-2018, including client demographics, socioeconomic factors (e.g. – income, healthcare coverage), and service utilization among clients enrolled in ADAP.

HRSA

The 2018 report found the following:

  • ADAPs served 285,000 People Living with HIV (PLHIV) in 2018;
  • The majority of ADAP clients are male, and nearly three-quarters are from racial or ethnic minorities;
  • White clients tend to be older than minority clients;
  • More than half of female ADAP clients are Black;
  • More than one-third of all ADAP clients have no health care coverage;
  • Clients living at or below 100% of the Federal Poverty Level (FPL) are more likely to be minorities, female, and/or transgender; and
  • The percentage of clients receiving only full-pay medication assistance has decreased, while the number of clients receiving other services, or a combination of services, has increased.

In looking at this report, one of the things that is confusing, not about the report, but in the way that HHS has classified Geographic Regions does not comport with U.S. Census Regions. This problem is not, however, unique to HHS – federal agencies have no single, standardized way of accounting for several measures – geographic regions, whether or not an area is rural, how populations are measured – each agency has its own ideas about who is whom and where they live. This means that regional reporting across federal agencies will differ from agency to agency, making it difficult to try to run initiatives that operate across state and local agencies, as funding and analysis doesn’t always align.

Those issues aside, the number of clients served increased by around 17,000 from 2017 to 2018, which is likely because more people are aware of and accessing services. I say this, because the total number of new HIV diagnoses has been steadily declining for several years. This can be seen as a partial success – a failure that people continue to contract HIV, but a success in that more people are being linked to care.

ADAP continues to be one of the most valuable programs in our nation’s healthcare system, as funds from ADAP can be used to purchase healthcare coverage for clients though “insurance continuation” – paying premiums and/or co-pays for insurance plans either purchased off the private market, or by reimbursing clients for employer-provided health insurance. 17.1% of clients currently have private insurance, 7.8% have employer-provided insurance, 14.6% have Medicare, and 10.9% have Medicaid coverage.

With the onset of the COVID-19 Pandemic, I expect the following things to occur that will make the Ryan White and ADAP Programs more important for PLHIV than ever:

  • There will be an increase in new HIV diagnoses in 2020, specifically among People Who Use/Inject Drugs (PWUDs/PWIDs). One of the negative consequences of shut-downs, stay-at-home orders, and hospital/clinic/emergency room service disruptions and restrictions is that PWUDs/PWIDs were often cut off from their social and healthcare networks, including Harm Reduction Programs (HRPs) and/or Syringe Services Programs (SSPs). These disruptions did not, however, mean that these people lost access to their drug suppliers or stopped using – they simply began using less safely. This means that we are likely to see a drastic increase in both HIV, and Viral Hepatitis transmissions within that demographic – a demographic that also tends to have lower incomes and less access to healthcare coverage;
  • Regular HIV testing has been disrupted, as a result of service interruptions related to COVID-19 and will likely remain disrupted until the pandemic eases. As such, it is likely that surveillance data will be spotty, at best, returning artificially low incidence counts in 2020 and potentially 2021/2022. We may not know the full scale of HIV transmission until 2023 or later, after testing rates return to normal, the two-year data lag that exists between states reporting to the Centers for Disease Control and Prevention (CDC), case confirmation, and CDC reporting of incidence and prevalence;
  • Ending the HIV Epidemic (EHE) Phase II funding is not expected to begin until 2025, meaning that rural states, like West Virginia, that see HIV outbreaks related to Injection Drug Use, and other jurisdictions not included in Phase I may, plainly put, be out of luck when it comes to securing federal funds to expanding testing, surveillance, and linkage to care; and
  • The economy during the pandemic has led to millions of job losses and, as a result, millions of individuals who may lose their employer-provided health insurance on top of losing their source of income. For PLHIV, this means that they will be in need of coverage, and for that, Ryan White and Medicaid may need to step in to fill that gap.

These issues mean that patients who do test positive during these times will be more reliant upon the Ryan White and ADAP Programs than at any time in the last decade.

Download the report online at https://hab.hrsa.gov/sites/default/files/hab/data/datareports/2018-hrsa-adr-data-report.pdf.

References:

  • Health Resources Services Administration. (2020). Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report. Rockville, MD: Health Resources Services Administration: HIV/AIDS Bureau: Division of Policy and Data. https://hab.hrsa.gov/sites/default/files/hab/data/datareports/2018-hrsa-adr-data-report.pdf

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, December 10, 2020

Treatment Delays Continue to Increase for Vulnerable Patients

By: Marcus J. Hopkins, Policy Consultant & Guest Contributor

There were numerous news reports over the summer about patients experiencing medication delivery delays being caused by the ongoing issues confronting the United States Postal Service (USPS). For patients who rely on mail-order prescriptions it is problematic. For those patients who are people living with HIV, it is even more problematic. Why?

Photo Source: NBC News

“Make certain you take your meds at the same time, every day, and never miss a dose.”

This was the first piece of advice I remember hearing about HIV medications, back in the 90s, and also when I started on my first regimen (Norvir, Lexiva, + Truvada). I had to store the Norvir capsules in the refrigerator and take my meds to work in a waterproof baggie kept in a lunchbox with an icepack – if the pills got wet, the dyes in the Truvada would melt everywhere, and it was just a freakin’ mess.

When I moved to Tennessee from Ft. Lauderdale, Florida, my Ryan White Part B meds were delivered via mail order, and I had to remember to reorder meds, every month, or I would be left with no alternatives, but to skip a dose. And skipping doses is very bad business, I was told.

“If you miss your dose, take it within 24 hours, or your virus will mutate, and you’ll become resistant to your meds, making it harder to treat!”

This was the conventional wisdom, for much of our treatment knowledge around HIV, because the older regimens had shorter half-lives (the presence of the drug in the blood decreased more quickly over time). As regimens have improved, we’ve seen 72-hour half-lives in some regimens, and research indicates that missing a single dose won’t cause the development of a drug resistance (Tong, 2017):

Wohl explained that people most commonly miss antiretroviral medication doses because of events in their life that cause chaos or get in the way of pill-taking. It’s not because HIV antiretroviral pills are harder to take than other pills or because they cause more side effects. (Tong, 2017)

When I moved from Los Angeles back to Morgantown, West Virginia, I was receiving prescriptions in three-month amounts. I had my ex send me my prescriptions via the USPS, and the first time, everything went perfectly. The second time, in July, the delivery went astray, which forced me finally get meds, here in WV, instead of relying upon my California AIDS Drug Assistance Program (ADAP) prescription to run out, but there was a sincere scare, there, that I would miss several days’ worth of Stribild.

That single mail mishap – which was apparently left where dogs were able to carry it off – resulted in a panic like none I’d ever faced; one that I’m seeing replicated all over the U.S. as a result of recent mail delays.

2020 has been a nightmare, on a number of fronts: a global pandemic, an incompetent U.S. response to said pandemic, and criminally competent administrative officials determined to disrupt and delay mail delivery in the U.S.

COVID-19’s arrival in the U.S. resulted in a very bad set of circumstances for the HIV world:

1.) For those most at risk of contracting HIV, organizations and agencies that traditionally provided regular HIV testing as a part of their services (e.g. – Harm Reduction Programs, Syringe Services Programs, Health Departments, Free Clinics, et cetera) have been forced to reduce their hours of operation, change the way they operate by limiting access to on-site facilities and reducing off-site/mobile services, or cease operation, altogether;

2.) In response to the threat of overcrowded hospitals and physicians’ offices led to extreme measures being taken to limit the number of persons allowed in buildings at any one time, with many existing HIV patients having to reschedule their visits for months later, in the hopes that circumstances would improve;

3.) For those receiving their medications via mail delivery, a number of critical changes put in place by a newly confirmed (and supremely unqualified) USPS Postmaster General have led to the destruction of mail sorting machines, the removal of overtime approvals, and an order that mail trucks leave regardless of whether or not there is still mail to load. This has resulted in mail delays of days – in some cases, even weeks – which, for people treating their HIV, can mean the mutation of their virus and the development of multi-resistant strains.

To be fair, there have always been minor snafus with mail order medications. A lost prescription; deliveries to the wrong addresses; weather-related mail delays. Since July 2020, however, these mail delays have gotten longer and more serious (Soprych, 2020).

Chart showing mail delivery delays
Photo Source: The Spokesman-Review 

Medication delays create a terrifying feeling of helplessness – there’s nothing that you, as a patient, can do to make postal/parcel workers find your medications, any faster; few pharmacies have in place the ability to narrow down or track medications using any GPS tracking; depending on the price of your medication(s), insurance companies and/or Medicaid may refuse to replace lost medications.

There is an abject feeling of despair, wondering whether or not you could’ve done something differently. You run scenarios in your head of going to get your mail, and to find it waiting for you with a note from a neighbor or the carrier, apologizing for the delay. You entertain vengeful fantasies of mail carriers fired for their incompetence. All the stages of grieving, all over some lost pills.

The worst is when you try to make do by trying alternatives – purchasing individual doses from the pharmacy, is one:

Matheny called the Postal Service about his prescription and was told that employees couldn't locate his medication. He called his insurer, but it wouldn't approve another refill because the medication is too expensive.

So, Matheny has been buying a single blood thinner pill from a community pharmacy every few days, when he can afford it. He has spent more than $400 so far. (Pfleger, 2020)

I did the same, once, with my HIV medications, in Los Angeles: $600 for three days of medications. As a waiter in a sports bar, I could bring in $120, on a Friday or Saturday night. During the week, I’d be lucky to break $100. Every dollar I made, in one week, went to purchase meds for three days.

For patients who live in rural areas, however, access to a pharmacy willing to do this may be entirely out of the question. For those patients, mail delivery may be the only way they can reliably receive medications. This makes the types of consistent mail delays that have occurred since July – when many of these policy changes were introduced – wholly unacceptable. 

Worse, still, is that no one will be held accountable for the negative consequences of these policies. No postal officials who approved these “cost saving measures” will be hauled before a court of law and charged with the deaths or criminal negligence that results from these delays, because that would require a system being in place to hold them criminally liable.

So, what can be done?

Much like those patients who are relying on a crippled USPS, the only thing to do is wait.

References:

  • Phleger, P. (2020, August 25). Postal Service Slowdowns Cause Dangerous Delays In Medication Delivery. Washington, DC: National Public Radio: Side Effects Public Media: Shots. https://www.npr.org/sections/health-shots/2020/08/25/905666119/postal-service-slowdowns-cause-dangerous-delays-in-medication-delivery
  • Soprych, C. (2020, September 10). Mail delivery mostly on-time until July [Graphic]. Spokane, WA: The Spokesman-Review: News. https://thumb.spokesman.com/KpKPwHsKl5SlEp-AZMgy7F0rnoE=/1200x0/media.spokesman.com/photos/2020/09/10/5f5b027f540f3.image.jpg
  • Tong, W. (2017, December 04). Here’s what you need to know about HIV drug resistance. San Francisco, CA: San Francisco AIDS Foundation: Treatment. https://www.sfaf.org/collections/beta/heres-what-you-need-to-know-about-hiv-drug-resistance/

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, December 3, 2020

Gareth Thomas: Fighting HIV Stigma with Empowerment

By: Sarah Hooper, intern, ADAP Advocacy Association, and senior at East Carolina University

The decision to disclose an HIV status has become more common over the last decade, but challenges remain. Namely, HIV-related stigma. Dating back to 1991 with the disclosure by Earvin "Magic" Johnson Jr., celebrities sharing their HIV status has helped to change societal attitudes. In late 2019, Welsh rugby player Gareth Thomas announced he was HIV positive, with the end goal to make sure that people understood HIV did not weaken him as a person. (The Guardian).

The stigma surrounding HIV has often created the false narrative of ‘this is the end’ - which is anything but true! Thomas used his massive media celebrity platform to speak, not only for himself, but others with living with HIV. Thomas wants to educate the world using hope and resiliency to end the negative stigma associated with HIV. 

Thomas is a big name within sports in the United Kingdom, and the announcement of his HIV status came just prior to the news about his marriage to Stephen Williams-Thomas. Revealing his sexuality in the world of rugby back in the early 2000s made headlines but coming out with HIV in 2019 felt just as big, according to Thomas. 

Photo Source: Huffington Post UK

“It felt much more shameful,” Thomas said. “This was something that I felt people wouldn’t understand.”

Prior to announcing his HIV diagnosis in 2019, Thomas said he ran into issues with the press wanting to reveal his diagnosis before he could tell his parents. The Sun ran a story about an ‘unnamed sports player’ who would reveal he had HIV, which upset Thomas greatly.

Thomas was disappointed in the media’s response to his HIV diagnosis, and said the media still has an appetite to expose people as HIV positive. One example of this was the negative reaction to Magic Johnson’s announcement of his HIV positive diagnosis in the 1990s, when HIV was still unfamiliar to many. Even with proper treatment and prevention, HIV still carries a stigma for many people, which Thomas felt. 

“I actually feel kind of empowered and feel like I live a freer, happier life when I don’t have secrets. I’m quite happy to shine a light on the negative moments in my life,” Thomas said. 

Photo Source: On Top Magazine

Thomas was recently tapped by ViiV Healthcare and the Terrence Higgins Trust to serve as the spokesman for Tackle HIV, which is a new public awareness and education initiative. 

Said Thomas about the Tackle HIV campaign, "Since finding out I have HIV I have learnt so much about the virus and about how it affects people living with it. HIV is still misunderstood and because of that stigma still exists. I have heard first hand stories of how deeply this stigma and self-stigma affects people living with HIV and I am determined to change this. That’s why I have started the Tackle HIV campaign."

Learn more at https://tacklehiv.org.

Celebrity transparency about HIV status has increased in the past three decades, which mirrors the general public. The announcements by celebrities, like Thomas, demonstrates that more needs to be done to combat HIV-related stigma. But every positive message (no pun intended) chips away at the negative attitudes still persisting today among some people. Thomas sharing his HIV journey, like the stories shared by many of our family, friends, and neighbors, serve as a reminder that an HIV-positive diagnosis and living a full, healthy and successful life don't have to be mutually exclusive. 

References:

  • Godfrey, C. (2020, June 08). Gareth Thomas on coming out as HIV positive: 'It was my right to tell my family – not somebody else's'. Retrieved from https://www.theguardian.com/sport/2020/jun/08/gareth-thomas-on-coming-out-as-hiv-positive-it-was-my-right-to-tell-my-family-not-somebody-elses

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.