By Marielle Reataza, MD, MS | Like many, I’ve spent the majority of my time in my apartment for the better part of a year. This past March marked the anniversary of California’s Stay at Home order, one of the most restrictive in the nation.
This whole year has led us to question our beliefs around agency and control—and along with it, our sense of belonging and visibility on both deeply personal and collective scales. More than ever, we are questioning what it means to be a contributing part of society and developing scaffolding for what accountability can look like.
Conversations around community and accountability often involve those of identity. I identify as Southeast Asian American. Specifically, I am Filipino/Chinese and a 1.5 generation immigrant from the Philippines.
I also identify as bisexual and queer. Having been raised in a strict Catholic home and coming from a country where descriptions of queerness have traditionally been limited, it is so clear to me now how impactful it is to be able to call something by its name and then give it meaning, context, action.
The ability for folks to define themselves better as an individual among community can be empowering. On a personal level, doing so has helped me understand where I’m starting off and then where I need to go. On a population level, it helps define nuances about pockets of communities that could have otherwise been silenced by “the majority.”
It’s often these neglected nooks within Big Data that continue to be overlooked time and time again, leading to some communities rarely being reflected accurately in well-known data. This emphasis on breaking down the nuances of Big Data is the basis for advocacy towards disaggregated data and having better baseline numbers for marginalized communities.
When it comes to addressing difficult, decades’ old public health concerns such as commercial tobacco use, the clearer understanding that disaggregated data can bring can help to curb use and support cessation altogether.
When it comes to understanding what a smoker looks like, falling through the data cracks has impacted my own experiences. As someone who simply didn’t have the understanding to see myself in the environment reflected back to me, it was hard to give my own experiences relevance. In my mid-thirties now and having worked previously as a physician and a high school teacher before then, it’s probably a shock to many when I tell them that I picked up my first cigarette when I was thirteen years old and then smoked, quit, relapsed, quit, relapsed, then quit again.
This cycle went on for several years. When I really think about it, the most surprising part about my story is probably the fact that I’ve gone years working in healthcare, public health, and tobacco control without ever mentioning my own previous struggles around smoking!
I am proud to say that I am no longer a smoker. While I take responsibility for my own choices and previous struggles with tobacco use, I can’t help but wonder if I would have thought differently about that first cigarette had I not had regular exposure or access to tobacco in my environment—either at home, with extended family, or with friends at school or around the block.
There’s not one reason that applies to everyone who has ever smoked, at least as far as what compelled them to pick up that first cigarette. We’ve all had our reasons, and that goes for anyone in recovery or still struggling with any kind of substance use. In looking back, I now wonder what kind of resources I would have needed that could have led me to drop that first cigarette before I ever put it to my lips. Could anyone have looked at me then, a nerdy and in-the-closet Southeast Asian teenage girl and ping me as a smoker?
Admittedly, visibility, especially when it comes to communities, is most obvious when it manifests in numbers. In a world where Big Data is king, I get its positives and drawbacks. On the one hand, it allows us to grasp very tangible facts from which we can easily produce measurable goals. So, data from 2013 through 2014 show that the rate of smokers among Filipinos is 18%? And you say the prevalence rate measured in 2016 for LGB adults is 20.5%? Great! Let’s work to lower those rates by x amount by x years. However, these numbers don’t provide much nuance. Why are those prevalence rates much higher than the 15.1% of adult smokers in the US cited by the CDC in 2015? What don’t the numbers tell us?
While numbers aren’t the end all, they certainly invite exploration. As rates of electronic smoking device use (vaping) rise and youth face their own updated version of targeted advertisement promoting tobacco use through vaping, there is even more reason to update our data and in doing so, give community leaders, health workers, and policymakers better starting points to provide our communities with much-needed resources to address tobacco use in ways that are culturally sensitive and much more accessible. In short, we need better ways to understand what our communities need, and to do that, we must continue to build our language to find clearer words on where to start.
I know I cannot speak for everyone who identifies as part of the AA and NHPI diaspora and/or LGBTQ+. In sharing my story, my hope is that enough of our community members make their experiences with tobacco known so that we can be more visible. Visibility is not the end all, but it’s a good start and a necessary one. You can make your experience visible by completing the We Breathe Survey and share about your tobacco use. Eligible LGBTQ+ participants will receive a gift card for completing the survey.
Marielle Reataza (she/siya) is a healthcare reform advocate and is on staff at Asian Pacific Partners for Empowerment, Advocacy and Leadership (APPEAL) as Senior Program Manager. She currently serves as Co-Chair of the OUT Against Big Tobacco Los Angeles Coalition.
Previous to her position at APPEAL, she worked on smoke-free multi-unit housing in the City of West Hollywood and the City of Rosemead.
In her free time, she loves to tend to her garden, practice yoga and Pilates, paint, sing and play guitar, and hang out with her cat George. Marielle is based in Los Angeles, California.
Photo Courtesy of Marielle Reataza
Should we vacation in homophobic countries?
Secret gay bar in St. Petersburg seemed unfathomable
ST. PETERSBURG, Russia — The tiny rainbow light projecting onto the corner baseboard of the bar and tipsy people constantly belting out Mariah Carey karaoke songs clued me in. There was something unique happening here. It wasn’t until a gentleman with glittered cheeks approached me to say how fabulous my dress was that I suddenly clocked it. I’d unknowingly ended up in a gay bar in the middle of Saint Petersburg, Russia.
A flood of overwhelming joy first took over. Before coming to Russia on vacation, I knew all too well the discrimination and fear LGBTQ Russians lived in. A gay bar in Russia, even a secret one like this, seemed unfathomable, so being where people could unapologetically be out and proud — even if it was only in the compounds of these four walls — was emotionally profound.
But within seconds, dread took over. Were we all safe? If you didn’t know what to look out for, you’d assume this was just like every other neighboring non-gay bar — it wasn’t hidden or anything. I wondered what was stopping a homophobe, if they found out, from vandalizing the bar or doing something much worse.
After all, Russia approved a legislation in 2013 prohibiting the distribution of information about LGBTQ matters and relationships to minors. The legislation, known as the “gay propaganda law,” specifies that any act or event that authorities believe promotes homosexuality to individuals under the age of 18 is a punishable felony. According to a 2018 report by the international rights organization Human Rights Watch, anti-LGBTQ violence in the country spiked after it passed. The bill perpetuates the state’s discriminatory ideology that LGBTQ individuals are a “danger” to traditional Russian family values.
A recent poll indicated that roughly one-fifth of Russians want to “eliminate” gay and lesbian individuals from society. In a poll conducted by the Russian LGBT Network — a Russian queer advocacy group — 56 percent of LGBTQ respondents said they had been subjected to psychological abuse, and disturbing reports of state-sanctioned detention and torture of gay and bisexual men in Chechnya, a semi-autonomous Russian region, have surfaced in recent years.
Considering this, it was no surprise that most of my gay friends refused to come on vacation with me to Russia. In our everyday, gay people don’t march around with a gay Pride flag so homophobic Russians would probably never be able to tell which tourists are gay. However, many LGBTQ people will never travel to Russia or any other homophobic country for one logical reason: Fear.
Unfortunately, many exotic locations abroad are dangerous territory for the LGBTQ community to be in. Physical safety isn’t guaranteed in countries like Nigeria, Iran, Brunei and Saudi Arabia where same-sex relationships are punishable by the death penalty. Not to mention the numerous transgender people who’ve been detained and refused entry to similar countries — even when it’s only been a layover! However, an alternative reason why someone may refuse to vacation in a homophobic country is having a conscience.
When you pay for accommodation, nights out and sightseeing tours, your money doesn’t just reach the hotel staff and waiters pockets — you’re also financially supporting that country’s government. Money talks so not giving homophobic countries tourism puts pressure on them. Ethically, why would anybody ever want to support a country through tourism that treats their LGBTQ community like dirt? Homophobia shouldn’t be shrugged off simply as a local “culture.”
Other LGBTQ people firmly embrace the right to go anywhere they choose, and that choosing to go gives them power. Homophobic countries still have closeted LGBTQ folks living there running underground gay spaces and groups. Is turning our back on the wonderful people and beautiful culture of a new place turning our back on their gay community too? There are countries where gay marriage is legal and trans rights are progressive, but abortion laws remain backwards. Do we boycott these countries too? And, how do we collectively define what a homophobic country is? Is legalizing gay marriage a requisite? Gay marriage is still illegal in Thailand when it is one of the most gay and trans-friendly countries in the world.
Increasingly the line of what is “right” and “wrong” erases all grey areas. Morality and activism — particularly when politics is involved — is never straightforward. The biggest surprise about Russia was how my own stereotypes I’d picked up from the media weren’t always true. Saint Petersburg in Russia is far more liberal and gay-friendly compared to rural Russia but the fact still stands that my bisexual friend and I actively chose to go to a homophobic country for pleasure. In an ideal world, anybody of any sexual orientation or gender identity would be able to vacation wherever they want but that’s sadly not reality. In the meantime, the wanderlust LGBTQ community will go on gay cruises that guarantee safe refuge or put civil rights and ideological differences aside to experience the world’s natural wonders and incredible cultures.
Ash Potter is a writer and radio host.
Financial disaster hits HIV agencies in January- Why won’t anyone stop it?
“National advocacy groups are essentially frozen into inaction, caught like deer in the proverbial headlights”
By Mark S. King | BALTIMORE – A financial crisis that will curtail hundreds of millions of dollars to HIV clinics and the community-based organizations that run them is coming on January 1, 2022. It’s only weeks away. Meanwhile, our national advocacy groups are essentially frozen into inaction, caught like deer in the proverbial headlights.
Spoiler alert: pharma giant Gilead Sciences again plays the villain in this story but there’s plenty of blame to go around. The landscape includes community organizations with a woeful lack of contingency planning, our government’s hypocritical lack of actual investment in “Ending the HIV Epidemic,” and yes, the insidious grip Big Pharma has on the people and organizations we trust to speak up on our behalf.
The situation is a doozy but somewhat murky. Buckle up.
The 340B program is a house of cards that is falling apart
Never heard of 340B? I’m not surprised. Its very complexity has sheltered it from skeptical eyes. My own crash course in 340B intricacies began in the last few months; this article is based on off-the-record interviews with providers, activists, staff within community-based agencies, and leaders from national HIV advocacy coalitions.
Journalist Benjamin Ryan does a great job of explaining how 340B works in his July 7, 2021, story for NBC News. I recommend you read it, but here’s the bottom line: 340B is a federal drug pricing law that makes it possible for certain safety-net community clinics with a pharmacy — let’s just talk about HIV or PrEP clinics here — to purchase name brand medications at rock-bottom prices.
For patients with insurance who receive the medication from those clinics purchased at the discounted price, the insurance company reimburses that pharmacy at a rate based on the undiscounted cost of the medication. If the patient does not have insurance, the pharma giant Gilead, which manufactures 90% of HIV treatment meds and the brand name versions of both approved PrEP drugs, makes a similar reimbursement to the clinic through its patient assistance program.
You read that right. These community clinics get a check for nearly the full retail price of a medication they bought for pennies on the dollar. The difference, the money the clinic is collecting out of thin air, is known as “the 340B spread.”
How much are these community-based programs making off this scheme? Collectively, it’s into the hundreds of millions of dollars per year, according to estimates I’ve received, but no one knows the real numbers because they aren’t reported. The windfall to agencies is perfectly permissible, though, and is considered “unrestricted funding.” Agencies have used the monies to cover other clinical costs in those clinics and to pay for everything from condoms to safe sex counselors to advertising.
Nowhere has 340B been more lucrative than for agencies that have pre-exposure prophylaxis (PrEP) clinics. The two brand-name drugs used for PrEP are both made by Gilead. Truvada, its first PrEP drug, has now gone off patent and there are more than ten cheap generic versions available. Gilead’s newer drug for PrEP, Descovy, is far more expensive.
The yearly cost of Descovy for one ‘PrEP patient can creep towards $20,000, so remember, most of that amount is sent to the agency through Gilead’s patient assistance program if the patient is uninsured, even though the clinic actually paid much less for it. Free money, folks.
If you were a community clinic with a caseload of uninsured patients, which drug would you prescribe for PrEP: the cheap generic drug that won’t bring much 340B money back to your agency, or the Descovy, which will generate an enormous reimbursement check from Gilead?
It’s difficult to fault a struggling community agency for gulping heartily from this spigot of unrestricted funding. Well, unless it is making clinical decisions unduly influenced by money rather than the interests of the patient. For example, Truvada has renal and bone-density side effects that are rare, while Descovy has been shown to contribute to weight gain and bad cholesterol. The choice between them should be a patient-centered decision, not a financial one.
Anyone with common sense would conclude that the 340B gravy train couldn’t possibly last forever. They’re right. In a few weeks, Gilead is derailing the train.
The Gilead gambit to abandon PrEP clinics
Gilead abruptly announced in April that it would change their policy on these 340B disbursements. They will no longer pay the clinics anywhere near the full retail price, only allowing for minimal mark-up and therefore ending the big 340B payday to clinics. After an initial community outcry, they moved the effective date from October, 2021 to January, 2022. Gilead is reportedly firm on this new date.
Does Gilead have the legal right to make this change? Yes. In doing so, though, they will devastate community organizations that rely upon this revenue. As ethicist Kwame Anthony Appiah recently advised in his New York Times column, “When you provide people with ongoing assistance, you tend to assume ongoing obligations… when a helping hand is dependably there, it’s only reasonable that we come to depend on it.”
Gilead is obligated to help solve a problem it helped to create, and not summarily abandon agencies that have come to depend upon Gilead’s funding.
For their part, Gilead claims that it is making this change because it just discovered it was reimbursing the clinics more than the clinics paid for the drugs. Uh huh. This program has been in place for years, folks. Gilead needs a new accountant, at the very least, if the fact it has dispersed hundreds of millions of dollars is somehow new information.
In another insulting statement of feigned ignorance, Gilead further claims that they had no idea that clinics relied upon 340B to fund their services. What does Gilead think agencies have been doing with this money? Maybe they figure everyone keeps a huge slush fund to use for, I don’t know, cozying up to physicians on expensive junkets and conference receptions.
Our community advocacy response has been weak, clearly. With COVID still slowing much of our activist momentum, minimal action has been taken to deal with this impending disaster. Make no mistake, when this change goes into effect clinics will close, programs will end, and preventable HIV transmissions will occur. So much for “Ending the HIV Epidemic.”
Gilead’s wholesale purchase of the HIV community is nearly complete
Aside from 340B reimbursements, Gilead still papers the HIV landscape with checks. There is nary an HIV organization or program in this country totally untouched by Gilead’s financial fingerprints. It makes it hard to publicly criticize Gilead when you’re waiting on its response to your grant request.
When I asked national HIV advocacy leaders what exactly is being done to persuade Gilead to change its decision or at least delay it until alternatives are found, I was met with silences so long that I thought my cell service had failed.
Take AIDS United, the national consortium of HIV organizations with a twenty-million-dollar budget that is tasked with looking out for our interests from a policy and legislative standpoint. After AIDS United’s strongly worded press release opposing Gilead’s change, there has evidently been little further action. A subgroup of its Public Policy Committee (PPC) considered a scheme to take money away from Ryan White, which funds HIV treatment, to help cover the loss of 340B funds to PrEP clinics. Cooler heads prevailed, fortunately, and that strategy was scrapped. Their current battle plan is, well… I have no idea. They meet this week. Let’s watch to see what they come up with. Gilead’s financial support of AIDS United runs deep, it’s worth noting.
Where is the United States Government?
Nowhere else in the world does a system exist where the provision of health services is dependent upon drug prices remaining high. It’s peculiar and perverse. If the United States had a national program that funded PrEP clinics we wouldn’t be confronting this mess. Sadly, it does not and we are.
This summer, an ad hoc community coalition sent a letter to Harold Phillips, Director of the Office of National AIDS Policy (ONAP) at the White House, asking ONAP to please broker a meeting between the coalition and Gilead to discuss a remedy for all this. Phillips declined. So much for leadership from the White House.
Here’s a fun fact: Douglas Brooks, who was once the Director of the White House Office of National AIDS Policy himself, resigned from it in 2016 after two years and started a new job as a Gilead executive just one month later. I’ll let that story speak for itself.
Then there’s the Presidential Advisory Council on HIV/AIDS (PACHA), made up of dedicated community advocates and clinicians but also littered with pharmaceutical executives and their apologists. What is this auspicious council doing, you might ask, about a crisis that will have a crushing impact on their National AIDS Strategy for “Ending the HIV Epidemic?” The agenda for the council’s meeting this week is public information, and nowhere on it will you find mention of the 340B funding crisis. Not a word.
Perhaps AIDS United could use its strength to work with legislators to create funding for these PrEP clinics, and we could all go back to being at the mercy of politicians rather than the pharmaceutical industry. That sounds quaint at this point, but it’s worth a try.
Some final thoughts
The more you understand 340B, the more you might lose faith in our systems of HIV funding, or doubt the allegiances of our community leadership, or even question the judgment of those who provide HIV clinical services. Being disgusted by the actions of Gilead is a given, but the actions (and inactions) of players within our own community are especially demoralizing.
I remember the activism that forced our government to address the AIDS crisis and to fund research for medications when there were none. You don’t even need a long memory to recall the activism of PrEP4All, leading to congressional hearings just two years ago on the high cost of Gilead’s PrEP drugs.
I never envisioned HIV community clinics would one day become pigs at the trough, gorging on money from a pharma giant we once opposed with righteous clarity, or that the national HIV advocacy coalitions we created would simply shrug in the face of an oncoming financial disaster, or that the National AIDS Strategy our government touted would ignore the structural needs of a true prevention response.
Above all, I worry for the individuals who will be left defenseless against HIV transmission come January, when the clinic that provided their PrEP medication and HIV prevention education closes.
Even if the closings happen without much notice to the people the clinics serve, it will certainly happen after plenty of warning to the rest of us.
King was named the 2020 LGBTQ Journalist of the Year by the National Lesbian and Gay Journalist Association (NLGJA). My Fabulous Disease won the 2020 GLAAD Award for Outstanding Blog after five consecutive nominations, and was named one of 2020’s “OUT100” by OUT Magazine.
The preceding article was previously published at My Fabulous Disease and is republished with permission.
The importance of prostate cancer screening: my story
My diagnosis reconfirms my commitment — as an activist, a journalist and a radio host — to fight for access to health care for everyone.
By Michelangelo Signorile | NEW YORK – I was recently diagnosed with prostate cancer. And I’m going to be fine.
Fortunately, it’s localized, and it’s been detected early — so early that I don’t require treatment right now beyond what is called active surveillance, which means monitoring how fast, or how slowly, it grows. If and when I do require further treatment there are options and it is curable.
All of that said, I can’t tell you that the past few weeks have not been a bit excruciating.
Waiting two weeks for biopsy results is living in a cesspool of anxiety. Finding out the news that you have cancer is a gut punch, particularly before you know many of the details. But learning all the facts is key to feeling in control of the situation.
I want to explain what happened so that maybe it can help other people, particularly with regard to the vital importance of early detection.
Back in February, I went for my annual physical and it turned out my levels of PSA — prostate-specific antigen — were slightly-elevated. For those who don’t know, this is a number determined via a routine blood test. I had no symptoms of prostate cancer. No physical exam showed anything out of the ordinary. Even a sonogram was normal.
Sometimes PSA levels in the blood can spike a little bit from working out a lot, and particularly from riding a bike. And some people just have higher levels at a given point, or develop PSA levels that bounce up and down. I could have been in those categories.
So, my doctors and I waited six months and did another PSA test. The number was slightly more elevated.
Only 25% of people with slightly elevated PSA levels, but no symptoms or indications via a digital rectal exam, turn out to have prostate cancer. There are other less serious health issues — such as a urinary tract infection — that can cause the number to be elevated.
The next step should have been an MRI. But my insurance company wouldn’t pay for it because nothing else beyond my slightly-elevated PSA levels indicated prostate cancer. In other words, I didn’t appear sick enough to find out how sick I was. This is another reason why health insurance is a disaster. In case you needed another reason.
So I had a biopsy. It wasn’t that bad, actually. Fifteen to 20 minutes in the urologists’s office, and done. Local anesthesia and some valium. Slight discomfort but no real pain.
Then the wait. And then the phone call from my urologist, after which my heart sank.
But I felt almost 100% better after my husband David and I went into the office, where my urologist explained it was found early and showed us precisely where it was limited to in the prostate. Finally, he said he fully anticipated a CT scan and a whole-body bone scan would show it had not spread beyond the prostate. (Both scans, performed a week later during a full day in a hospital, confirmed his belief.) My friend Joe had advised me to record the meeting with the doctor because I would be so overwhelmed I’d forget just about everything. My mother thought that was such smart advice, and she was right.
Active surveillance — basically, monitoring the PSA numbers via a blood test every few months — is actually now considered a treatment. If and when I require or would like further treatment, there are choices, different options with excellent outcomes. I have time to research them and weigh them, and get other opinions.
Having that ability can in large part be attributed to early detection.
“Friends” star James Michael Tyler, who famously played Gunther, tragically died this week due to prostate cancer at the age of 59. Tyler appears to have a had a much more aggressive form of prostate cancer. But early detection still would have made a difference. The cancer had already spread to his bones by 2018 when he had his very first PSA test, which showed staggeringly high levels of PSA in his blood. Tyler said he should have “listened to my wonderful wife” and gotten tested sooner:
I would have gone in earlier, and it would have been, hopefully, caught earlier. The next time you go in for just a basic exam or your yearly check-up, please ask your doctor for a PSA test. Caught early, 99 percent treatable.
So I want to take this opportunity to urge everyone who has a prostate and isn’t getting PSA-tested to speak with your doctor about regularly getting a PSA test. I’ve now learned that some doctors advocate regular screening when patients turn 40 while other doctors don’t test at all, even among older patients, unless a patient requests it.
The Prostate Cancer Foundation recommends screening beginning at 40 if you are Black, or have a family history of prostate cancer. And beginning at 45 for everyone else. The American Cancer Society says screening should begin at 50, and at 45 if you’re Black, or there is a family history. The U.S. Preventive Services Task Force recommends talking to your doctor about screening beginning at 55 (and only screening until age 69).
These differences in recommendations have caused confusion. They stem, for the most part, from concerns among medical professionals about too many unnecessary biopsies and over-treatment. So, if your doctor hasn’t already decided to regularly screen you (and I’m thankful that mine did) you have to make the decision for yourself and ask about it. It’s just a blood test. It can’t hurt you. But it can save your life.
You should also be getting a routine digital rectal exam (DRE), which takes just a minute. Some doctors don’t perform it. Some patients don’t like to have it done. Get over it. Sometimes PSA levels will reveal a problem while a DRE doesn’t show it (as in my case). But in other instances a DRE will indicate an issue that a PSA test doesn’t reveal.
Let me repeat: I had —and still have — no symptoms. I feel great, and am in otherwise excellent physical condition. I’m very active and workout at the gym or run outside just about every day. I’ve been vegetarian for over 30 years. So don’t think you’re too healthy, or that you’d feel ill or would have some other indications.
I’m sure many of you have been down this road, or are on it now, and will have a lot to add. I’m grateful for your thoughts and experiences. Certainly queer people of my generation lived through the early HIV epidemic and empowered ourselves, learning that information is power. My experience as an AIDS activist has taught me a lot and I’m confident it’s prepared me for this.
I’ve already come to realize, for example, how straight men and gay men, as well as transgender women, are faced with uniquely different sets of challenges when it comes to prostate cancer treatments, possible side effects affecting sexual health and other issues. And you can guess which group the medical field is often more geared toward focusing on.
I consider myself very lucky. I benefited from early detection. I live in a city with the best doctors and medical technology in the world. And I have comparatively good health insurance, headaches and ridiculousness notwithstanding.
It means very little to tell people to get PSA-tested if they are uninsured and don’t have adequate medical care. And that is the case for millions of Americans. My diagnosis reconfirms my commitment — as an activist, a journalist and a radio host — to fight for access to health care for everyone.
Michelangelo Signorile is an American journalist, author and talk radio host. His radio program is aired each weekday across the United States and Canada on Sirius XM Radio and globally online.
Signorile is noted for his various books and articles on gay and lesbian politics and is an outspoken supporter of LGBTQ+ rights. He became a gay activist in 1988, after attending a meeting of the grass roots protest group, ACT UP, in New York. Signorile rose to national prominence as a columnist and writer for OutWeek magazine where he ‘outed’ closeted public figures who were working against the LGBTQ+ community.
Signorile was inducted into the National Lesbian and Gay Journalists Association LGBT Journalist Hall of Fame in 2011.
The preceding article was previously published at The Signorile Report and is republished by permission.
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