The contrast couldn’t be more stark. Assemblymember Christy Smith is bright, effusive and clearly enjoys engaging with her community in campaign ads shot before the stay at home order. Mike Garcia loves fighter jets and his family. Voters with mail-in ballots must decide by May 12 which candidate will better represent the 25th congressional district in filling out former Rep. Katie Hill’s term.
The Los Angeles Times April 17 endorsement is straightforward.
“There’s no question which candidate is better prepared to step into the debate and help shape smart policy. That’s state Assemblywoman Christy Smith, a quietly accomplished and centrist Democrat whose background includes stints as a U.S. Department of Education policy analyst and as a longtime member of the Newhall School District board. Her experience guiding a school district through the last economic downturn and now the state through its pandemic response makes her uniquely qualified for precisely this job at precisely this moment,” said The Times.
“Smith’s opponent, by comparison, is simply not a good fit for Congress at any moment,” with the editorial noting that Republican Mike Garcia‘s “nice backstory…doesn’t translate into legislative competence.”
Perhaps unsurprisingly, after several Garcia supporters chimed in on Twitter about proving the LA Times wrong, on April 20, President Trump pecked out two tweets endorsing Garcia, the second of which hyped the Second Amendment: “[Garcia] is Strong on Crime, the Border, and the Second Amendment. Mike has my Complete and Total Endorsement!”
“Thank you @realDonaldTrump for your support. I am running to keep this nation safe, lower taxes, grow jobs and to ensure we protect the Constitution through all times!” Garcia tweeted. He later added: “It is crucial to know the difference between the candidates, especially during times of crisis. I’m a former fighter pilot who believes CA taxes are out of control.”
“Like most voters in our community, I trust and prefer the endorsement of our doctors, nurses and firefighters,” Smith said in response. “Donald Trump is failing to provide testing to millions of Californians and encouraging citizens to go against the advice of public health professionals, putting their lives at risk, and delaying the re-opening of our economy.”
She, meanwhile, is completely focused” on getting “protective equipment to medical personnel, financial assistance for workers who have lost their jobs, and funding our health care system to lower costs.”
Smith’s campaign posted an online video with Trump on the coronavirus side by side with Garcia. “I think Trump is a good President,” says Garcia. “No, I don’t take responsibility at all,” says Trump. “Everyone should have to figure out how to fend for themselves,” says Garcia.
Smith criticized Trump for encouraging supporters to protest, to “LIBERATE” three states. “While millions of Californians are staying home to protect their families, emergency responders & frontline workers, @realDonaldTrump‘s remarks spurred reckless protests that could jeopardize public health for all,” she tweeted. “I saw this firsthand in Sacramento today.”
Smith was at the Capitol for the Legislative Budget SubCommittee Hearing on COVID-19. As the daughter of a nurse, she applauded the nurse “patriots” who tried to block the unmasked, ungloved protesters.
That day, April 20, Los Angeles County reported preliminary results from a new scientific study suggesting that coronavirus infections “are far more widespread – and the fatality rate much lower – in L.A. County than previously thought,” according to a county press release. “The research team estimates that approximately 4.1% of the county’s adult population has antibody to the virus,” says the release, “which translates to approximately 221,000 to 442,000 adults in the county who have had the infection.”
On April 21, Yahoo News reported that the protests were organized around the country by Trump Republican groups, including a longtime political advisor to the wealthy family of Secretary of Education Betsy DeVos, the leader of an organization called Minnesota Gun Rights, and InfoWars screamer Alex Jones.
But April 20 was important to Smith for another reason: it was the 21st anniversary of the Columbine school shooting, “which took the lives of 13 innocent souls and injured 24 others, we remember and honor the fallen by renewing our resolve to end senseless gun violence. #NotOneMore.”
Garcia offered no similar sympathy post.
In an April 22 phone interview, the Los Angeles Blade asked Smith if she was concerned that Trump’s promotion of the Second Amendment might be dangerous. She noted that her 25th CD has “a decidedly strong common-sense advocacy around gun control” with local high schools creating chapters of the March For Our Lives movement, as well as a strong and sizable Moms Demand Action group.
“While a number of us respect responsible gun owners’ rights, there is also a much, much greater proportion of the community who believes the time is now to take greater action, especially because one of the most recent school shootings that occurred prior to the COVID crisis and more people staying at home was at Saugus High School,” in Santa Clarita.
So, says Smith, Garcia’s “not going to get a lot of traction fighting about that issue in this district.” Additionally, “Donald Trump lost this district in 2016 by six points, and he was rebuked here again in 2018 when Democrats won this congressional seat. So, there is no love lost here for the president and his positions on a number of issues.”
In fact, says Smith, “the bulk of his platform is that he is a Trump loyalist. He’s not really putting forward any policy solutions on anything related to housing, or health care, environmental concerns, LGBTQ rights, women’s equity rights. So, I think for lack of an ability to formulate what it is he believes in and what he’s going to be fighting for, he just says he’ll stand with the president. In particularly in this moment, that’s not enough.”
Photo of Christy Smith by gay political activist Michael Colorge (via Facebook)
Meanwhile, work continues in the State Legislature, including work-arounds the unintended consequences of AB5 that was supposed to help gig workers, freelancers and independent contractors but has instead hurt by disallowing access to unemployment and other safety net funding.
“So, the good news on AB5 is a couple of things. At this time where a lot of those businesses, restaurants, performing arts spaces are closed anyway as a function of the Cares Act, independent contractors, 1099 employees are afforded through something called the PUA (Pandemic Unemployment Assistance),inability to qualify for unemployment insurance. That includes in California, the $600 a week add on. It was also part of the Cares Act,” says Smith.
“On April 28, that link will be available to people across California to go on to EDD and apply for that financial support now, regardless of their current employment status, if at any point recently they have been an independent contractor or 1099 employee, they’ll be able to qualify. We’re being told that those qualifications, once everyone has their data in the system, will be given within 24 to 48 hours. So, help is on the way there.”
Smith says “progress has been made on negotiating on changes to AB5, particularly with freelance and for people in the different areas of the entertainment industry. Those fixes, according to the bill’s author, Lorena Gonzalez, will be added to a bill with urgency for when the legislature returns on May 4th, and so those will be added and moved on pretty quickly. We will continue to monitor that.”
Gov. Gavin Newsom must make the decision about whether to suspend or set AB5 aside during the crisis. “But I think there’s never been a more critical moment and more critical time that proves that — regardless of what happens with that bill going forward — we know that workers need these job protections. Because in crisis moments like this, people need to be able to access unemployment benefits, they need to have healthcare protections, they need to have return to work rights.”
“When workers are misclassified or they are out of the employment systems because employers aren’t adhering to those regulations, a lot of people end up getting hurt,” says Smith. “I heard somebody brilliantly say it a few weeks ago that crises like this, a pandemic fractures society along known fault lines. We definitely now know that one of those big fault lines in our employment system was those with rights and benefits and those without. Both sets of workers working equally hard, but some left out of the greater benefit of having some of those protections. So, I think it’s a conversation that will continue, but I am excited that we’ve made some progress, especially on the industries that are most impacted in Southern California, and we will continue to work on that.”
Smith says that she “completely agrees” and is “very, very happy” about the letter sent by California LGBT Legislative Caucus leaders Sen. Scott Wiener, and Assemblymember Todd Gloria asking Newsom to start LGBT healthcare data collection during the novel coronavirus crisis and will ask to have her name added to the roster. “That was one that didn’t end up in front of me, but I was glad that it happened,” she says.
Smith is also concerned about how the COVID-19 crisis is impacting non-profits.
“The work for the nonprofit community is important for two vital reasons, one of which is that they are a significant part of our social safety net in everything from provision of healthcare services to food support and housing support services. These are essential aspects of support in the time of crisis that are really urgently need it,” says Smith.
“But secondarily, they are one of California’s, in particular, largest employers,” she says. “About 15% of California is employed in the nonprofit sector. So, to not support nonprofits in this moment would be shortsighted from the perspective, not only losing the services, but also losing the really important employment that comes along with it.”
Smith “completely supports” Rep. Adam Schiff’s effort to get large non-profits such as the Los Angeles LGBT Center included in the Federal Reserve loan program.
“I completely support that. Large nonprofits and small. The LGBTQ Center, in particular, you know the number of folks that that helps day in, day out — to lose those vital and critical services would be a huge loss. To lose those 800 employees and the economic benefit that comes from that would be a huge loss,” Smith says.
“But here in the 25th CD, we have a cancer support organization and it does just enough every year to support those people on the healthcare margins. They are almost entirely out of money, yet they’re helping patients who now find themselves jobless and without their healthcare coverage,” she says. “Just last week they sent down almost the rest of their remaining funds paying for a year’s worth of chemotherapy treatment to a patient who had just become unemployed, but couldn’t get that treatment from the hospital unless she paid up front. So, there are very real life impacts that are happening from our nonprofits struggling right now.”
Smith, who has a strong background in education, is also concerned about how to help marginalized students in minority neighborhoods during coronavirus pandemic.
“I’ve been part of conversations with legislative colleagues around how we continue to make sure that families in need — and that children in need, in particular — still have avenues to check in with the caring adults in their lives who usually are there through that physical school setting, but that they’re still having that opportunity. It’s been a very high priority for our state’s teachers to check with their kids, even the ones that don’t have that wifi connectivity or the technology. There are teachers all over the state making calls to homes to check in with kids, but in particular, with respect to those kids who struggle because they do find that homebase at school, I’d say it’s incumbent on all of us who care to continue to push out that resource publicly in places where we can so that they know where those support centers are. They know those phone numbers they can call just to check in with someone if they are struggling.”
Not just students, but teachers, too, need help.
“We recognize the significance of our schools as part of that vital social safety network. Kids on the margins are checking in with adults. They’re being seen by people who will know something is a little bit off and can help direct that child to get the help and support that they need. Having that opportunity be lost in this moment is really hard. I know I’ve talked to a number of teachers and it’s incredibly hard on our teachers right now,” she says. “They are really feeling it in profound ways; they’re struggling with it because they do the job because they care. It’s been hard.”
Smith says the legislature is moving in the direction of supporting more tele-health services – something Smith has incorporated in her own congressional campaigning.
“This is just a part of our team ethos now that we’re campaigning in an environment where we are calling people who have been at home and suffering through the challenges of this unusual isolation,” Smith says. “I’ve equipped anybody who’s volunteer phone banking for me with resource hotlines and information. We start every call to voters with, ‘Hi! First of all, we want to know how you’re doing.’ If the conversation moves in a direction where that person needs additional help, needs those resources, we point them in that direction. I am grateful that I have such an amazing and wonderful field team — there have been a couple of these calls now where we needed to call someone back a little bit later and say, ‘Just checking in on you. Wanted to make sure everything’s moving along okay.’ So, we take that role very, very seriously.
“This is about more than winning an election. This is about a very unique opportunity for us to be there as a support for our community,” Smith says. “But having grown up in a family where there was both mental health issues and domestic violence, it is an issue that is very near and dear to my heart and ever front of mind for me and something I’m going to continue to look at from both the policy perspective and then the work and advocacy that I do directly in the community.”
Despite her clear connection to the community, Smith says the race is still close because Democrats traditionally skip voting in special elections. She wants to reverse that trend.
“I just appreciate people to stay tuned to this May 12 election,” she says. “Please engage, if you can. If you have friends, family members who live in the district, urge them to vote because the thing that will make the difference in this election is if our voters get those ballots in. That’s it. That’s the single most important thing.”
If you want help with remote phone banking, go to: https://www.mobilize.us/mobilize/event/263189/
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.
Study finds HPV vaccine cuts cancer rates by almost 90%
Cervical cancer kills more than 300,000 women worldwide every year but the disease is uncommon in young women under 30
LONDON — The HPV, or human papillomavirus, vaccine cuts cervical cancer cases in young women by nearly 90%, according to a King’s College London study published in The Lancet.
The study — which Cancer Research U.K. called “historic” — found that cervical cancer rates in women aged 12-13 vaccinated against HPV were 87% lower than women without the vaccine. In women aged 14-16, rates were 62% lower and 34% lower in women 16-18.
Nearly all cervical cancers, which are the fourth most common cancer in women worldwide, are caused by viruses. The research fuels hope that vaccination could almost eliminate the disease.
The King’s College researchers looked at U.K. population-based cancer registry data between January 2006 and June 2019. The women were inoculated with the Cervarix vaccine, which protects against two strains of cancer-causing. New vaccines, sold by Gardasil, protect against even more strains.
The study estimates that by mid-2019, there were 450 fewer cervical cancer cases and 17,200 fewer cases of pre-cancers in the vaccinated population.
“This study provides the first direct evidence of the impact of the UK HPV vaccination campaign on cervical cancer incidence, showing a large reduction in cervical cancer rates in vaccinated cohorts,” study co-author Dr. Kate Soldan from the U.K. Health Security Agency said, per CNN.
“This represents an important step forwards in cervical cancer prevention,” she said. “We hope that these new results encourage uptake as the success of the vaccination program relies not only on the efficacy of the vaccine but also the proportion of the population vaccinated.”
It is still too early to know the full impact that HPV vaccinations have on cervical cancer rates.
Though all women are at risk of cervical cancers, the disease is uncommon in young women, as it occurs most often in women over the age of 30, according to the Center for Disease Control and Prevention (CDC). The study also collected data from the outdated Cervarix vaccine — the U.K. now uses Gardasil.
According to the BBC, cervical cancer kills more than 300,000 women worldwide every year. Almost 90% of those deaths come from middle and low-income countries, and the hope is vaccination will have an even bigger impact in those nations.
The World Health Organization (WHO) started the first-ever global commitment to eliminate cancer called the Global Strategy to Accelerate the Elimination of Cervical Cancer. The goal is to vaccinate 90% of girls against HPV before they turn 15.
The U.S. Department of Health and Human Services started a campaign to increase HPV vaccination rates, mainly targeting states with low vaccination rates.
Prof Peter Sasieni, one of the researchers at King’s College London, called the study “just the tip of the iceberg.” He added that the “impact has been huge.”
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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