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 Politics of Monkeypox
Break out your ACT UP attitudes – shit’s getting real – again so be vigilant against political thugs and bullies
LOS ANGELES – Be Vigilant. Donald Trump’s confederacy of thugs have disrupted and threatened violence at Pride events across America nearly a dozen times in recent weeks — as if the massacre at the Pulse Nightclub and the proud MAGA insurrection at the US Capitol on January 6 weren’t enough.
They are aided and abetted by an army of “Christian” spinmeisters who are always asserting anti-LGBTQ+ allegations to inspire hostility and denigrate the very idea of LGBTQ+ Pride and Equality. Just look at their inhumane attacks on trans kids. Would Jesus do that?
And now there’s Monkeypox. The World Health Organization (WHO) and the Centers for Disease Control (CDC) have been sounding alarms and flashing red lights about the growing health emergency.
The CDC reports: “Monkeypox spreads through direct contact with body fluids or sores on the body of someone who has monkeypox, or with direct contact with materials that have touched body fluids or sores, such as clothing or linens. It may also spread through respiratory secretions when people have close, face-to-face contact. In the current monkeypox outbreak, we know that those with disease generally describe close, sustained physical contact with other people who are infected with the virus. We continue to study other possible modes of transmission, such as through semen.”
And there, so to speak, is the rub. The spectre of a pox on gay men is irresistible fodder for our enemies to produce stigma and ugly propaganda. A new “gay plague” is a wet dream for the Proud Boys who disrupted a Drag Queens Story Hour and more intersectional reason for white nationalist groups like the Patriot Front to riot at Pride events in the name of curing the disease.
We’ve heard this before. “The poor homosexuals — they have declared war upon nature, and now nature is exacting an awful retribution,” infamous anti-gay commentator Patrick Buchanan wrote May 24, 1983 in the New York Post.
Moral Majority pitchman Rev. Jerry Falwell debated MCC founder and prominent gay activist Rev. Troy Perry on whether AIDS was God’s punishment for homosexuality. Hell, no, wrote MCC Rev. Stephen Pieters (famously interviewed by evangelical Tammy Fay Bakker) in The Body:
“The idea that HIV/AIDS is a punishment from God is based on three faulty assumptions: that homosexual acts are sinful, that God causes suffering, and that God punishes sin with disease. These false assumptions result from a particular way of looking at society, sexuality, and how God works in the world.”
So steel yourself for the disgusting slings and arrows about to be shot our way as scapegoats in the culture war over monkeypox.
But we’ve been here before, too. In the early 1980s, HIV/AIDS was called G.R.I.D. (Gay-Related Immune Deficiency). Before the self-empowerment movement conceived and publicized by Michael Callen, Richard Berkowitz and Dr. Joseph Sonnabend and before the Denver Principles ignited the power of organizing, people with AIDS were called “victims” at the mercy of intentionally ignorant government bureaucrats. ACT UP brought self-empowerment to the streets and into the newsrooms and living rooms of everyday people.
If Monkeypox is used as a cudgel against the community of men who have sex with men (MSM), it will be time to ACT UP and fight again.
So, here’s what you need to know to protect yourself against the Monkeypox virus, which is rarely deadly, but nonetheless seriously as unpleasant as shit:
The illness begins with:
- Muscle aches
- Swollen lymph nodes
Within 1 to 3 days (sometimes longer) after the appearance of fever, the patient develops a rash, often beginning on the face then spreading to other parts of the body.
Lesions progress over 2-4 weeks into unsightly scabs before simply falling off, producing some scaring. In Africa, monkeypox has been shown to cause death in as many as 1 in 10 persons who contract the disease but death rates in the recent European and American outbreak have so far been zero.
This is not a gay disease nor is it a sex-panic but it is hitting our community hard and we must protect ourselves and each other.
And that means educating ourselves and asking questions. For instance, PReP, which is a hugely successful and lifesaving drug that prevents transmission of HIV, does nothing at all to protect against Monkeypox, which can be transmitted through skin-to-skin contact by hugging or even sharing the clothes of someone with the virus.
One huge difference between now and the old AIDS days is that now the government is trying hard to work with us. That may change in November if Trump’s Republicans takeover Congress. And it’s not just federal.
Today, most LGBTQ protections are through some federal laws and policies but most are through a patchwork of state and local laws that are being undermined rapidly by a right-wing attempting to destroy the gains we have made. Surely, by now you’ve heard how we’re “groomers,” a spooky 1950s term that means pedophile. Soon we’ll once again be “diseased pariahs.”
So what should the community, the business and institutions that serve us do?
Be proactive. Grindr, Sniffies and Scruff and in-person sex businesses should not only promote safer sex practices but link to credible CDC/WHO information about monkeypox, including the risk of contracting the disease. Community organizations and healthcare agencies should add a monkeypox section on their website and take the lead on promoting information about how to protect ourselves.
Social media companies have a particular responsibility to prevent disinformation and I call in them to monitor Monkeypox conversations to reduce misinformation.
But here’s the most important thing: I call on you to fight back and be vigilant against political thugs and bullies, to care for yourself, for your partners, friends, neighbors – and, as a critical precaution — keep your monkey paws wrapped before you serve it up.
We can get through this if we empower ourselves and take care of each other, again.
Learn more about monkeypox:
Troy Masters is the founder & publisher of the Los Angeles Blade.
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.
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.
How identity and visibility relate to curbing commercial tobacco use
I’ve gone years working in healthcare, public health, and tobacco control without ever mentioning my own previous struggles around smoking
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
HIV Genetic Data is tracked and shared. It’s creepy and dangerous.
This is either going to make you very angry or it will totally creep you out
By Mark S. King | If you are a person living with HIV, the Centers for Disease Control and Prevention (CDC) and your local health department probably already have your HIV genetic profile. They have been examining it and comparing it to a genetic analysis of other people. People in your community. People you might know.
You probably never knew this was happening, because no one ever bothered to ask for your express consent.
It is called Molecular HIV Surveillance (MHS), and learning about this is either going to make you very angry or it will totally creep you out. Maybe both.
This is how it works. When someone receives an HIV-positive test result and begins care, one of the first lab tests typically done is a genetic analysis of the HIV in that person’s body. This determines if the HIV is resistant to any of the HIV medications and helps the provider design the most effective treatment plan.
While this step applies most often to the newly diagnosed, genetic analysis is also done when someone already on treatment becomes resistant to a class of medication and a new regimen is being considered.
Helpful and totally cool, right? Sure, so far. What happens next is what has HIV activists crying foul.
Since 2018, the CDC has required health departments in every state to submit the genetic data (with identifying information like names stripped out) to the CDC. The CDC then compares and contrasts results to determine if there is a new and emerging group of people with HIV who share a close genetic match. If so, they tell health department people to march in there and get a handle on it.
Of course, to do that, identifying information that had been stripped out must be restored. Armed with the person’s ID, Infectious Disease Specialists knock on doors or visit shelters or streets to track down these people and ask for their sexual or drug-using contacts and persuade them to behave in ways that will avoid more transmissions.
What I have just described constitutes the continued policing of marginalized communities by the authorities. The implications are chilling, far-reaching and not in the best interest of public health or of people living with HIV. (People who are HIV-negative are also ensnared in this practice, because they are often identified as sexual or drug-sharing partners and then tracked and contacted just the same.)
Recently, the U.S. People Living with HIV Caucus sponsored a webinar on Molecular HIV Surveillance as part of AIDS Watch, the annual legislative advocacy event produced by AIDS United. The webinar laid out this process and its potential for harm in very simple terms.
The issue goes far beyond the legitimate concern of informed consent. Marginalized people — Black and brown and trans folks, primarily — already are policed and surveilled more aggressively than other communities. Infectious disease specialists often lack the cultural sensitivity to understand why medication adherence, for instance, may not be among the Top Five concerns of someone in these communities.
Furthermore, the fear of some kind of punitive action creates apprehension in these communities, often enough to turn them away from seeking care entirely. And yes, public health authorities knocking on doors carries an implicit threat in communities traumatized by fraught histories of bad policing.
“HIV surveillance scares the shit out of me, as a Black woman who is living with HIV who primarily functions in Black low-income communities,” panelist Evany Turk acknowledged during the webinar. “I live in a state where they consider my Black body living with HIV a deadly weapon. We know we can’t trust these big, huge systems. We know we can’t trust them with our information, because we know they are inherently racist.”
It gets worse.
Criminalization laws in many jurisdictions penalize people living with HIV for allegedly not disclosing their status to sex partners, regardless of whether they took precautions, or were undetectable (and therefore unable to transmit the virus), or even if a transmission did not occur. Right now, people living with HIV are sitting in jail for no other crime than having had the audacity to have sex.
The worst case nightmare activists fear is genetic HIV data being used when someone tests HIV positive and prosecutors are looking for someone to blame. What if it were as easy for the criminal justice system as searching through genetic records and – viola! – someone is incriminated because their HIV virus is a close genetic match.
To date, there are no known cases of molecular surveillance being used in the United States to prosecute someone with HIV. However, it has already been used for a prosecution in Canada. Activists don’t feel like waiting for the United States to follow Canada’s lead.
Our federal government, meanwhile, has made Molecular HIV Surveillance one of the pillars of its “Ending the Epidemic” plan. Rather than working with community members to structure how this data will be used and how best to protect people living with HIV, the government keeps pushing forward without engaging us.
Other ways in which genetic data is being examined are just plain weird.
During the webinar, panelist Brian Minalga pointed out that Seattle public health researchers are examining what they call the “demographic dynamics” of the “transmitting partner” and the “receiving partner.” They are looking at categories like age, race, and ethnicity, and calculating who is more likely to transmit HIV to whom.
Is the older gay guy more likely to infect the younger guy? Is the Black man more likely to infect the white woman? How the hell is this biological parlor game relevant, other than to reinforce established biases and stereotypes?
Webinar moderator Naina Khanna reported that activists shared their concerns with CDC leadership during the Trump administration. They sought CDC assurances that Molecular HIV Surveillance data would not be shared with other governmental agencies like ICE or Homeland Security, agencies that could cite the costs of HIV healthcare as grounds to refuse an asylum request or to deport someone.
“The CDC leadership declined to comment on this issue,” Khanna said.
In a recent presentation at the Conference on Retroviruses and Opportunistic Infections (CROI), CDC official Alexandra Oster, M.D., was just thrilled about the potential of molecular surveillance to identify “clusters” of new infections and geographic areas where prevention efforts should be ramped up.
Your argument might have more credibility, Dr. Oster, if public health departments had track records of actually engaging with, and investing in, affected communities rather than showing up to police the area after your lab identifies a “cluster” — a dehumanizing term that amounts to a “cluster fuck you.”
In her presentation, Dr. Oster waved away privacy concerns, stating that the data would never be used in a way that endangered people living with HIV.
Uh huh. We’ll set aside for a moment the fact that having public health people show up at your home or workplace can risk your job or your domestic safety. Let’s focus on the CDC’s credibility with public facts and assurances.
Remember when the CDC was caught last year trying to please the former President by falsifying weekly COVID-19 figures so the pandemic wouldn’t look so bad? That reputation-shattering scandal is still stinking up the CDC hallways. CDC officials are hardly in a position to assure anyone what will, or will not, be done with public health data.
The Public Policy Council of AIDS United issued a list of recommendations to address Molecular HIV Surveillance. Recommendations include banning MHS from legal proceedings or prosecutions, and ensuring the informed consent of people living with HIV is obtained before their genetic data is used in this way. The U.S. People Living with HIV Caucus position is that molecular surveillance should be halted immediately.
Finally, this issue underscores how America’s health and criminal systems stack the deck against people living with HIV.
Webinar panelist Larry L. Walker learned this firsthand when he enrolled in case management services at his local health department in Georgia. Walker was made to sign a document acknowledging that he was living with HIV, and the document included language about disclosing to his sex partners. This is cruelly paternalistic treatment toward someone dealing with a life-changing diagnosis.
By sharp contrast, when a genetic analysis from a person living with HIV is acquired by public health departments — where it is examined and used to identify and contact others with whom the person may have been in contact — the person living with HIV is not asked to sign anything because public health people don’t value their privacy enough to get their consent.
The rights of everyone else are being prioritized over the rights of the person with HIV, and these measures are often taken as soon as the person tests positive. The process of blame, distrust, and dehumanization begins moments after their diagnosis.
Molecular HIV Surveillance is simply the latest example of health systems disregarding our very humanity. It is also a license to hunt down people living with HIV in marginalized communities while ignoring their right to privacy or consent. We must resist it.
MARK S. KING is an award winning blogger, author, speaker, and HIV/AIDS activist who has been involved in HIV causes since testing positive in 1985. King was named the 2020 LGBTQ Journalist of the Year by the National Lesbian and Gay Journalist Association (NLGJA). King’s My Fabulous Disease won the 2020 GLAAD Award for Outstanding Blog and he was named one of 2020’s “OUT100” by OUT Magazine.
The preceding article was previously published at My Fabulous Disease and is republished by permission.
Men of color in LA County have higher mortality stats and lower vaccination rates
Fewer males are being vaccinated than females, with only 30% of males in Los Angeles County having received at least one dose of vaccine
LOS ANGELES – There are significant differences in mortality rates between males and females in Los Angeles County that are troubling since case rates among women and men are relatively similar, with 11,866 cases per 100,000 women and 11,330 cases per 100,000 men.
As of April 10, the cumulative mortality rate for females is 153 deaths per 100,000 women. Shockingly, the mortality rate among males in Los Angeles County is nearly double, at 289 deaths per 100,000 men.
Black/African American and Latino/Latinx males also experience higher rates of mortality than Asian and White males. The mortality rate for Black Los Angeles County male residents is 267 deaths per 100,000 people and for Latino males, the mortality rate is 490 deaths per 100,000 people; this is nearly two and a half times the mortality rate for Asian males and more than three times the mortality rate for White males.
Unfortunately, although men, and men of color in particular, have significantly higher risk of dying from COVID-19, males in Los Angeles County, specifically Black and Latino males, have much lower vaccination rates.
Fewer males are being vaccinated than females, with only 30% of males in Los Angeles County having received at least one dose of vaccine as of April 4, while 44% of females have received at least one dose of vaccine.
Black and Latino males are also being vaccinated at lower rates than vaccination rates for all other groups. Only 19% of Black males in Los Angeles County and 17% of Latino males received at least one dose of vaccine, compared to 35% of Asian males and 32% of White males in Los Angeles.
“We all need to work much harder to make sure that men, who have the greatest chances of dying from COVID-19, are aware of their risk and that we are making it very easy for them to get vaccinated. Accurate information about the safety and effectiveness of the three available vaccines that protect from the COVID-19 virus needs to be widely available,” a spokesperson for the Los Angeles County Department of Public Health said in a statement.
Public Health is making several changes to the Health Officer Order that will take effect on April 15. These changes align with the state changes to the Blueprint for a Safer Economy regarding indoor live events and performances, private events such as conferences, receptions and meetings, and private informal gatherings. The updated Health Officer Order reflecting these modifications will be posted online on Wednesday along with changes to the protocols for each of these sectors.
Starting this Thursday, indoor live events and performances will be permitted in Los Angeles County with the following safety measures:
- Indoor live events and performances are able to open for in-state visitors only, who must pre-purchase tickets.
- Eating or drinking is not permitted anywhere except pre-designated eating areas.
- Masks must be worn at all times except when in designated eating areas.
- There must be 6-feet of distance between different households unless people are fully vaccinated.
- As with outdoor live events, employers must offer a weekly worker testing program.
For venues that hold up to 1,500 people, there is a maximum capacity limit of 15% or 200 people, whichever is fewer. However, the capacity limit can increase to 35% if all guests are tested or vaccinated. For venues holding more than 1,500 people, there is a capacity limit of 10% or 2,000 people, whichever is fewer, although the capacity limit can increase to 25% if all guests are tested or vaccinated.
Private meetings such as conferences, receptions and meetings will be permitted starting on Thursday, April 15 with the following safety measures:
- There must be a defined guest list or tickets must be purchased.
- Masks must be worn at all times unless attendees are eating or drinking.
- There must be 6-feet of distance between tables and chairs for guests not vaccinated.
- There must be assigned seating or a seating chart with a max of 6 people per table for guests not vaccinated.
- And there can be no intermingling of multiple private events.
For outdoor private events, a maximum of 100 people is allowed, but that limit can increase to 300 people if all guests are tested or vaccinated. Tables are also limited to 6 people from a maximum of 3 households unless everyone at the table is vaccinated. Indoor private events are only allowed if all guests are tested or vaccinated with a limit of 150 guests.
Public Health is also modifying the protocols for private social or informal gatherings. Outdoor gatherings can have up to a maximum of 50 people. Masks will be required at all times unless people are eating or drinking. There must be 6-feet of distance between tables and chairs. Seating at tables is restricted to 6 people from up to three households. If everyone is vaccinated, the capacity limit at tables are not necessary.
Indoor private gatherings are permitted, but strongly discouraged. If you choose to hold an indoor private gathering, the following are required safety modifications:
- A max of 25 people or a 25% capacity limit where capacity limits exist.
- Masks must be worn at all times, unless everyone is full vaccinated.
- And there can be no eating or drinking unless everyone attending is fully vaccinated or everyone attending is fully vaccinated except for members of 1 household that does not have any high-risk individuals.
Public Health confirmed 3 new deaths and 411 new cases of COVID-19 Monday. The lower number of cases and deaths may reflect reporting delays over the weekend.
To date, Public Health identified 1,226,191 positive cases of COVID-19 across all areas of L.A. County and a total of 23,479 deaths.
The seven-day average number of daily cases by episode date remains at 400 new cases per day. The County’s daily case numbers for the week ending April 4 are now lower than reported cases one year ago at the beginning of the pandemic, when Public Health reported 606 daily cases by episode date on April 4, 2020.
For information about how to make an appointment, what verifications you will need to show at your vaccination appointment, to sign up for a vaccination newsletter, and much more, visit: www.VaccinateLACounty.com (English) and www.VacunateLosAngeles.com (Spanish). Vaccinations are always free and open to eligible residents and workers regardless of immigration status.
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