**Trigger Warning: Sexual Assault**
Earlier today, in the midst of the Roy Moore scandal, I read a piece by an Alabaman Republican defending him because the 14 year old girl in question went with him willingly, saying that teenagers make bad decisions.
Of course they do, which is why we have age of consent laws, which put the burden on adults to hopefully make smarter decisions.
I know of what I speak. I came out at 14, and like every other high school boy, wanted sex and I wanted it “right now.” That summer, I was doing a musical in community theatre, and 2/3 of the men in the cast were openly gay. Several of them acted like big brothers to me, but no matter how much I flirted, they all kept a respectable distance and behaved appropriately. I thought I was mature enough to deal with it, and there’s no way I could have been: but at 14, you don’t know what you don’t know and you don’t have enough life experience to understand outcomes, emotional damage and how things can affect you years later. I’m very glad for the men in that cast, because as I was figuring out who I was and what it meant to be gay, there were positive role models all around me.
In the winter of 1989, when I was 15 years old, I went away to a very prestigious, top-rated boarding school in New England. Shortly after I arrived, I noticed some graffiti in the mens’ locker room of the athletic center, which set a time for some gloryhole action. Being a horny teenager, I showed up at the indicated time and through the gloryhole (what HS gym has glory holes!?!) I saw a really nice cock. I acted on my impulses, and after a little while, was invited to come into the next stall. I was surprised and taken aback that it wasn’t another student, but was someone in his 30’s that I’d later find out was a member of the grounds crew. He finished, left me in an untidy state and unsatisfied. I cleaned up the best I could and went back to my dorm to shower and gargle nearly an entire bottle of listerine.
My first sex. At 15, with a 30-something man in the men’s room of my HS gym. I’d never felt so dirty, and I never thought I’d get the taste of him out of my mouth. I did tell my parents about it, and they wanted to sue the school and have the man fired. Though I was openly gay, I didn’t want to be the guy who’d had gloryhole sex in the bathroom. I didn’t want to be the kid who hooked up with a member of the grounds crew (elite schools come with snobby thinking.) I didn’t want to be have to defend myself and tell the story over and over again. In fact, this is the first time I’m publicly telling it.
(Sidebar: the chair of the theatre department was on sabbatical that year, and I never knew him, but in the next year would be busted for regularly having male students to his apartment and videotaping them. The culture at that school was clearly toxic.)
I didn’t have sex again until I was 18, and again, that was again with someone in his 30’s, who I dated for a summer.
For nearly a decade, my relationships were limited to 2-3 months. I didn’t date someone for more than 3 months at a time until I met my husband when I was 29. I had plenty of sex, both inside relationships and in quick pick-me up fashion, but for more than a decade, probably more than two, I would hop right out of bed and go clean up as quickly and completely as possible. Does that hearken back to my first encounter? Was sex now branded in my brain as something that was quick and dirty? Was my ability to intimately connect emotionally with people damaged by that experience? I’d have to say yes. I was raised by parents who loved each other, who I never saw fight and who stayed together through thick and thin until my mother passed away in 2009. My role models and examples were happy, stable and committed people.
Something affected my ability to connect, and the only thing I can think of was that first experience when, at 15, I sought out what I wanted and acted on it. I’m not saying I wasn’t eager or hungry for it, but I will say that clearly, I wasn’t ready for the impact or the outcomes. It wasn’t until I was nearly 40 that I even realized/understood that I had been assaulted in that men’s room. It’s not until now, halfway between 40 and 50 (and almost 30 years later) that I’m even willing to consider the idea that legally, I had been raped.
I don’t think sex is dirty, I’ve grown a hell of a lot in the last 15 years (and yes, with some therapy in the mix, and some loving men who don’t mind talking and unpacking emotional truths and feelings), but there’s always going to be the memory of sneaking out of the gym, racing back to my dorm room and swigging Listerine. That will never go away, and that should never be anyone’s first reaction to sex.
Teenagers make bad choices. As adults, it’s our job to help them make good ones, not open the doors for them to have to live with the decisions they have no ability to make cognitively.
We can’t blame a 14 year old girl, no matter what she may or may not have wanted, no matter if she consented or not to a 32 year old’s intentionally predatory advances. I was mature for my age, by all measures and standards, and yet, my life and ability to form relationships may have been compromised for decades because an adult who should have known better took advantage of me.
UPDATE: On December 8, 2017, I received a call from a detective at the police department in the town where the school is located. Someone at the school has read this blog and asked the police to look into the matter. We are well past any statute of limitations, and I couldn't identify the man at this point, but I do appreciate their attempts to find me and ask if there was anything that they could do. It is on record now as an official complaint.
UPDATE 2: On February 14, 2018, I met with lawyers representing the school and spent two hours discussing my experience in as much detail as I could remember after nearly 30 years. They had done their on-campus research and did as much as they could do to get to the bottom of the story, including trying to identify the other party. They seemed to believe me. Speaking out, in this case, has led to the discovery of a school trying to understand its past to ensure that they are doing everything they can to avoid this in the future. My case was not an isolated incident, and I am glad my story has the potential to help others. It isn't easy to speak out, but I feel better having done so.
So LogoTV is producing an all gay take on the Bachelor. Wonderful. Just what the world needs: another thirteen people rejected by some hot, successful unknown person to make us all feel better about ourselves. (Can you tell I've never actually watched a rose ceremony? Or even care?)
Yesterday, however, TMZ has leaked, as only they can, the news that at least one of the contestants was HIV+ and that this would become a plot point during the course of the show.
My brain flashes back to Pedro Zamora, the HIV+ cast member of MTV's first season of "The Real World." By 1994, there had already been 18 television shows or movies that had at least one HIV+ character, but Pedro was real. He wasn't a character, he was a person, and that was new to us. But it's now 2016. By Wikipedia's count, there have been 38 television shows or movies featuring characters with HIV (and in some cases, multiple characters.) The course of the epidemic has changed, and with it, so has the way many of us talk about it.
You're right when you say, "Witti, you live in New York City, you work for an HIV Services Organization, you live in a bubble," but I will still put the challenge out there to the producers of "Finding Prince Charming." Do NOT sensationalize this. It's a group of fourteen gay men. Odds are that at least one of them would be HIV+, but this isn't the time to go, "OH MY GOD!" It's the time to say, "Yes, and he's treatment adherent, has an undetectable viral load and a longer life expectancy than those two in the corner with the martinis." It's also a chance to say, "Have you heard about PrEP?" Disclosing his status in pursuit of a romantic/sexual partner is absolutely appropriate, but the mere fact of an unsensational disclosure would be groundbreaking.
But then there are comments like this one from the star himself: "For me, it's like: Is someone HIV-positive not worthy of love?" said Robert Sepúlveda Jr., 33. "That's really the question, and it doesn't matter to me. 'Prince Charming' would be accepting of anyone, and that's how I am." How generous.
It's 2016, and people living with HIV deserve better than to be stigmatized and used as "gotcha!" drama on a reality show. Let's hope that the producers at LogoTV, which was originally for an LGBTQ audience, will recognize that and handle the issue sincerely will handle the issue sincerely and with the sensitivity and nuance it deserves.
And are you on PrEP?
Originally posted at DailyKos.
An Open Letter to Senator Bernie Sanders (I-VT)
Dear Senator Sanders,
Waking up this morning to the news that you have labelled Hillary Clinton “Unqualified” to be President of the United States has literally left me sick to my stomach.
You know, not the “Oh, I had bad guacamole last night” feeling, or the “I shouldn’t have eaten the entire pint of Ben and Jerry’s,” but the, “We’re going to lose to Ted Cruz and everything we’ve worked so hard for over the last thirty years is going to go to hell,” feeling.
Senator, I am a supporter of Secretary Clinton. I have made no secret of that, and have been for decades. In 2008, I was a vocal supporter of hers in the primary, and gladly unified behind Barack Obama when he won the nomination. Part of a primary process is debating positions, debating issues and ultimately coming together behind the nominee.
I appreciate you, Senator. I agree with almost all of your positions, with the major exception (and it’s a major one) of gun control. I am a supporter of Secretary Clinton because I believe in incremental progressive change and the need to build political infrastructure to get anything done. You can read my earlier blog about that, “Hoping for Followthrough” here on Daily Kos. At the end of the day, it’s my practical approach that has separated me from you, not your positions. I have applauded as you have moved the needle and the conversation to the left, staking out critical territory on income inequality and helping to bring these issues to the forefront of the conversation. I’ve even named my large suitcase “Bernie Sanders” because it’s blue and pulls to the left.
But yesterday, you infuriated me. And yet, I will still support you if you are the nominee of the Democratic Party, because the differences between Left and Right are still so deep and clear, and at the end of the day, we need to keep a leftist, a liberal, a progressive, whatever word you choose to use, in the White House.
Today, though, I am nauseous. I am furious. I am scared of the possibility of President Ted Cruz because of your assertions that Hillary Clinton is “unqualified” to be president.
You, sir, have just given any of your supporters the out they need not to support Secretary Clinton should she prevail in the nomination race.
You, sir, have just further inflamed the most radical of your supporters, and have done so with the biggest lie you have ever told.
Hillary Rodham Clinton is, without a doubt, the most qualified candidate to ever run for President in the history of the United States. In the past, we’ve had Senators, we’ve had Governors, we’ve had the odd Congressman, but we have never had someone who’s served as a Senator and as a top ranking Cabinet Secretary, who also has the first hand experience of having been the first lady of a state and the first lady of the nation. She has seen with her own eyes, first hand, how things work, how things don’t and how to effect change and impact people. She has seen this from the executive perspective, from the legislative perspective and from the foreign policy perspective. She has been vetted over and over for the last 25 years by the left (who think she’s too moderate) and from the right (who think she’s too left). You may not agree with her positions, but you cannot claim that she is unqualified.
We have, what I consider to be, two well qualified candidates currently running for the democratic nomination for President.
With the rhetoric in this campaign getting more heated, and with your own acknowledgement that you disapprove of how many of your supporters are acting, I would have hoped that you could have kept things rational and genteel in your remarks yesterday in Philadelphia.
The #BernieorBust movement has no place in American politics. No #...orBust movement does, because we live in a nation of compromise, we live in a nation of process and we live in a democratic republic. Providing fuel to those supporters who feel it’s #BernieorBust, which is to say, “If I don’t get my way, I’m taking my toys home and breaking all of yours as I leave,” is downright dangerous.
I speak with many of your supporters, and frankly, I get very nervous as the word “Revolution” is thrown around. I don’t disagree that we have some significant problems in the way our country is working right now, and that changes are needed, but I fundamentally believe that our Constitution is still one of the best designed systems of government in the world. Certainly it’s not flawless, and certainly it could stand a 21st Century rewrite, but that’s the job of a constitutional convention. Calling for “Revolution” in a world where civics and history classes have failed to teach the lessons of the past is dangerous. Internal Revolutions (which are really civil wars) rarely work out in the long run. Ask France. Ask Russia. Our own Revolution was against an occupying power and was a different shape. Insisting on “BernieOrBust” is incitement to civil war, and our own history should show the challenges inherent to the insurgency in a violent uprising.
Your words yesterday fed that fire.
Your words yesterday will continue to build a sense of entitlement.
Your words yesterday will not help bring our party together after the Convention, and frankly, Senator, that’s dangerous.
Many of your supporters will say, “That’s okay, no, we really DO mean revolution, with a capital R and guns and violence.” If that’s what you stand for Senator, and I don’t think it is, please be plain about it.
If not, call off your dogs, walk back your words and tone down the rhetoric of destruction.
Secretary Clinton did not call you unqualified. She resisted MSNBC’s attempts to get her to do so. She said you were “unprepared,” and I don’t think that given the reaction to your NY Daily News Interview, that even you could disagree that you were unprepared FOR THAT INTERVIEW. I was surprised and disappointed that you didn’t answer better, particularly on your key positions, and particularly because a sit down interview like that shouldn’t have been a pop quiz. But Secretary Clinton, though pointed in her criticism, did NOT call you unqualified, no matter what a Washington Post headline may have read.
If you truly believe in this nation, now would be the time to walk back those remarks. Secretary Clinton may not be as progressive as you’d like and you may fundamentally and vehemently disagree with her on significant policy issues, but your words yesterday were unnecessarily inflammatory and inciteful, and as this nomination race enters endgame, it’s more important than ever that we all be prepared TOGETHER to keep moving this nation forward, and not backward.
#ImWithYou #ImWithHer #ImForUs
A Die Hard Pragmatic Progressive in New York
**UPDATE** Thank you so much for the shares! My first Rec List!!
Thursday, Apr 7, 2016 · 11:26:34 AM EDT · MBJ
I stand corrected. Thomas Jefferson was the most qualified candidate in the history of the nation. Jefferson had been US Vice President, US Secretary of State, US Ambassador to France, a US Representative and the Governor of Virginia before he ran for President. So, she’s the SECOND most qualified. After a guy on Mount Rushmore and the Nickel.
Originally posted at Daily Kos on February 3, 2016.
We have a problem with politics in this country, and I’m going to say something controversial: the problem isn’t the Republican Party, the problem isn’t the tea party, the problem is US.
Yes, us. The progressive, liberal or moderate left.
We have an enthusiasm problem. My first presidential election was 1992’s matchup of George H. W. Bush vs. Bill Clinton. I was in college, a member or participant of every left wing campus organization at Drew University: the LGBT Alliance, The Womyn’s Concerns Club, the Drew Environmental Action League and was a card carrying member of the Democratic Socialists of America. I was a believer in guerilla tactics, particularly where LGBTQ awareness was on the agenda. I was an outspoken proponent of HIV testing, went to national student conferences and marched on Washington. In 1992, I campaigned for Clinton and even snuck into a Bush rally with a sign that said “Gay Men Unite! Lick Bush in 1992!”
We were all very excited: here was the first Boomer presidential candidate. He was talking gays in the military, he was talking about universal health care, he was talking HIV/AIDS, and underneath (or perhaps above it all) was his message that at the end of the day, “It’s the Economy, Stupid.”
Bill Clinton was “The Man from Hope.” LITERALLY. He and his wife were young, they were activists, they spoke for us and about us in ways that we’d never heard from the presidential trail before. We got behind them, we elected them and it was going to be a new day: a far cry from the policies and styles of George and Barbara, or Ron and Nancy, the only examples that any of us had to compare in our young lives.
And what a day it was! Until the Right fought back. The election of Bill Clinton and Al Gore, two young southerners, infuriated the Republican party. They geared up for the midterms in 1994, and in one of the most sweeping political movements we’ve ever seen, halfway through the first term of the Man from Hope, we were hit with Newt Gingrich and the Contract (on) America.
How did this happen? We were so excited! There was so much possibility!
We let it happen. We were so caught up in the political excitement of the Clinton Campaign (gays in the military and universal health care), that we didn’t pay attention to the practical side of things. In 1992, the country wasn’t nearly as open to the idea of LGBT rights, we were still dying of HIV, sodomy was still illegal (Lawrence v Texas wouldn’t be heard for another 11 years), and Will & Grace were still six years away from hitting the television. Universal Health Care was attacked left and right (remember “Harry and Louise?”) The country wasn’t accepting things with open arms yet, and if the nation as a whole wasn’t, the powerbrokers in Washington were even further behind. Clinton was smacked down on his most progressive platforms in the first couple of years of his first term and we were disappointed.
And we stayed home in 1994.
We let Newt Gingrich take over the national conversation.
We allowed the pendulum to swing back because we weren’t there to stop it in November 1994.
The rest of Clinton’s presidency was marked by compromise and we were often disappointed, discouraged and disgusted. We turned out in 1996 with just enough force (and the help of Ross Perot drawing voters from the right) to beat Bob Dole, but only just: Clinton had 49.2%; Dole and Perot together 49.1%.
We stayed home again in 1998, and wouldn’t regain the House until November 2006, when anti-Bush sentiment gave us a boost.
In 2008, we had a remarkable presidential race with a whole lot of enthusiasm! Democratic primaries came down to two candidates, either of whom would be making history as the first African-American or the first female president, and I will acknowledge supporting Hillary Clinton in the primary. I’m a political pragmatist, and while I believe in big bold ideas, I’ve grown more thoughtful about strategies.
We elected Barack Obama on a platform of Hope and Change. There’s that word again, “Hope.” It’s a lovely word, it’s ALWAYS a great word, and it’s just so darned hopeful. We gave him a Democratic House and Senate to go along with that, so the world was our oyster and all was perfect and we’d finally get that pretty pony that we’d been promised during the campaigns.
Except there are no pretty ponies, and the election of our first African-American president transformed this nation: the insidious racism that had been lurking in back rooms and quietly whispered about came right out on the front porch. An entire swatch of our voting population suddenly got interested in politics and the Tea Party was formed. (That’s another story entirely, but John McCain has to answer for a lot in the elevation of Sarah Palin: trading policy for idiocy.)
We didn’t get all of our pretty ponies in 2009-2010, so once again, we stayed home nationally in the mid-term elections. We let the rabid right take over the House, and to date they’ve tried to undo the Affordable Care Act 63 separate times.
Oh, and yes, we stayed home in the elections of 2010 and the Republican Party captured more statehouses around the country, putting more and more power into their hands. When the census was done in 2010, they were there, ready and waiting to take that data and redistrict their little hearts out, gerrymandering us into a permanent minority.
Neither did we do ourselves many favors in 2012 or 2014. It seems that progressives on the left only really turn out when Hope is on the menu, not practical reality.
Right now, in 2016, We now have fewer democrats in the house than any congress since 1949. If we win every possible competitive race this November, we will still be three seats short of the majority. We have done this to ourselves.
Now, you may ask, why this abridged history lesson? Why is it so important to look at how we didn’t vote in 1994, 1996, 1998, 2010, 2012 and 2014?
The answer to that is easy: the far left wing of our party is asking us to vote for Hope again. Yup, it’s back, that four letter word that’s so easy to throw around every eight years, but so hard to support every two.
In 2008, I was for Hillary Clinton because I thought we needed someone to clean up the mess of the Bush administration. I still think I was right, but we nominated Obama, who I wholeheartedly support and think has been a really amazing president, but we still have a mess to clean up, and one that the republicans have made right in front of us, under our noses and while we were watching them do it.
If we want real change, that’s real long-term impactful change, we shouldn’t be screaming about HOPE in 2016. We need to be screaming about moving forward TOWARD hope in 2016, and 2018, and 2020 and 2022 so that in 2024 we can actually do something about it.
Change doesn’t happen overnight, and looking back over the presidential elections that we’ve had since I’ve been of voting age, we keep looking for it, and then turning our backs when the going gets tough. Rallies and banners and slogans are great, but politics is an every-day game, not once every four to eight years.
We need to elect someone in 2016 who will keep moving us forward while we build the army from the ground up. We have dropped the ball, we have really fumbled it badly and our work needs not to focus on just the happy feel good hopeful moments that come in a presidential campaign, but the outreach and hard work that goes with electing people to district committees, town councils, state assemblies and senates. We need to challenge the Republicans at every level and not let seats go unchallenged. We need to build a pipeline of strong progressives coming up through the ranks and who will be ready in 2020 to redistrict fairly and get rid of a lot of the gerrymandered garbage twisting its way through our communities. We need to have those people run for congress in 2022 and 2024. We need tested leaders in mass numbers, not just in one or two polarizing figures.
No one we elect in 2016 has a chance of making the huge big scale changes that we’re hearing from either the left OR the right: we have a system designed for incremental changes, with checks and balances. (And that’s good: imagine a President Cruz with the power to make major unchecked policy changes!)
Recent history shows that when we elect a messiah, we are disappointed and fail him. Let’s not do that again this time, but work on ensuring that when he (or she) DOES come, we’ve given him (or her) the congress, statehouses, city councils and governor’s offices that they need to do their work.
My enthusiasm hasn’t waned over the last 24 years, in fact, it’s gotten greater and more passionate, but now it’s combined with the knowledge of the way the game is played.
American politics are a long game, and it’s time that the left understood that and played to win it.
So last night, the planning committee for Leather Pride Night XXXII voted to cease production and operations.
For thirty-one years, this annual event celebrated New York City’s Leather Community. It was borne out of a financial crisis surrounding the NYC Pride Parade in 1983 when the City’s leather and fetish organizations came together, pitched in and helped raise the money the parade needed to continue that year. When I first became involved in LPN as an attendee 15 years ago, there were more than a dozen vibrant leather and fetish groups helping to produce it, along with a handful of “GDI’s” as they were called – God Damned Independents. For most of the history of the organization, the GDI’s didn’t have a vote: the organizations, through representatives that facilitated communication back and forth, selected beneficiaries, acquired donations, promoted the event and sold the tickets.
Last night, it was time to say “When.”
Times are hard. I was there when we shut down The Next Generation group of Gay Male S/M Activists back in 2004-2005. I was there when GMSMA proper shut its doors a few years later. They had lost too many active members in an age where people could hook up on line and could learn (sort of) about leather practice and the community through videos. The lack of personal connection and safe space to grow and learn is sorely missed in this city, but it’s not just GMSMA: other organizations have come and gone, some are still out there but struggling with their own decreased memberships, some no longer see the value in a collaborative community, for others still, LPN just isn't a priority. When the committee voted last night to end Leather Pride Night, we did so mostly as individuals.
Trying to hold on to a community that stubbornly insists on being ephemeral is frustrating. There are no fewer people interested in leather, fetish and kink than in the past: take a quick glance on Fetlife or Recon and you’ll see new people every day getting into the scene. What’s missing is the family, the shared sense of purpose and responsibility to maintain a communal, shared space. New York City kills gay bars, and leather/fetish bars even moreso, but I am very proud to be part of the New York Eagle’s family.
I appreciate that we have a major generational gap in gay male culture where HIV/AIDS wiped out a huge proportion of the men who would today be between 45 and 65: those who should have been here to help pass down traditions, values and a shared commitment. Leather families in other cities and spaces seem to be thriving in ways that make this New Yorker envious. (Wait, we live in the greatest city on the planet and we’re envious of others? YES!) People in general seem less committed to collective work, group dynamics and community than they used to. Am I bitter because I seem to have been on the tail end of those that WERE committed? Perhaps, but dammit, it was good. And should BE good.
What happened? And what’s next?
Leather Pride Night is gone, but when The Next Generation shut its doors, the New York Boys of Leather rose to fill the vacuum for a few years. I look forward to seeing what new collaborations come up, because we ARE a community whether we recognize it or not, and as long as we’re seeking brotherhood, we will find it.
To those who came before, I salute you. To those with whom I sat last night and knew the time had come to say “When,” I am proud to have been among you – we did good. To those who come next: don’t forget to invite everyone to the party.
We have a syphilis epidemic in this country, and here’s one reason why.
In my line of work, I get to meet people from many walks of life, backgrounds and sexual orientations. Because I work for an HIV Services Organization and facilitate one of their weekly support groups, friends of mine often ask me for advice, so I often hear stories and experiences of a very personal nature. This is one of them.
“Jack” (duh, not his real name) takes relatively good care of himself. He is middle aged, sexually active, employed and has health and prescription benefits. He sees his doctor, follows instructions and recommendations, and tries to keep ahead of any ongoing health concerns.
A little over two years ago, he tested positive for syphilis. This caught him by surprise because he was totally asymptomatic. His doctor gave him a prescription for bicillin, a strong penicillin antibiotic suspended in an injectable form. He was to pick it up and bring it back to the doctor for an injection, and then do it again in each of the succeeding weeks. When he first went to pick up the prescription, he was astonished that the cost or each dose was in excess of $160: his insurance didn’t cover it. Although penicillin is a basic and generic drug, apparently the insurance gods decided it wasn’t worth covering this particular formula. Jack paid for the first dose and took it to his doctor, but confessed that he couldn’t afford two more co-pays. His doctor told him that he could get the shot for free at the NYC Department of Health STD clinics, and wrote up a detailed prescription and note, complete with test results and other information.
Jack took it to the Department of Health clinic in Chelsea, where the doctor’s report to them meant very little and they ran him through a battery of questions themselves, and based on some of his answers, even made him speak to a harm reduction counselor for excessive drinking. (apparently 3 cocktails twice a week is excessive.) After an hour and a half, he saw a doctor who gave him the injection, along with a hardy dose of good Christian judgment about the behaviors that led him to contracting syphilis in the first place. More than two hours later, he left, sore, but understanding that he had to return and do it all again the following week.
Flash forward 18 months to his next physical. His numbers had improved from 1:128 down to 1:1, which is what you would expect from someone who had been treated properly. All was good. Nine months later, however, the test showed 1:4…syphilis antibodies were detectable again, but at this low level, his doctor thought a single dose of bicillin would be enough. Knowing that the insurance company wouldn’t pay, Jack reminded his doctor that he could go to the DOH and they agreed that this would work.
However, at a different branch of the DOH, Jack was subjected to even more judgment than he had been previously. Not only did he have a caseworker asking to have a full list of every sexual contact Jack had ever had (impossible with the rise of apps like Grindr and Tinder), but started lecturing him on how serious syphilis was and the impact of the epidemic. Rather than treating him like an adult who WAS keeping on top of his own healthcare and being proactive when something developed, this case manager was making him feel like a child who was being naughty and dirty. Jack’s patience was at an end and he was, admittedly, not very pleasant himself. This led to a conversation between the caseworker and the doctor, who was the same judgmental doctor Jack had seen two years previously…and they both recognized each other. The doctor greeted him with a “Back again?” question and proceeded to go through a battery of questions and tests and examinations. The process took two hours and was ultimately frustrating and humiliating for him, but he left with the single dose that both his private physician and the DOH doctor deemed appropriate for the treatment.
Three months later, in January of 2015, his test number was still at 1:4. Not worse, but not better. However, given the experience at the DOH in November, he was not interested in running their gauntlet for three weeks in a row.
His doctor suggested that they might be able to order the medicine to be delivered to his office, and then work it as an office procedure, and the pharmacy agreed to that: with a $670 payment, no savings over purchasing it at the pharmacy. The insurance company disagreed with the pharmacy: this wasn’t a hospital ordering, this was a doctor’s office, so they’d charge $70, the same cost for a specialist office visit. That also seemed hopelessly random, but the other treatment solution was a two week run of a powerful oral antibiotic that had given Jack incapacitating nausea when it had been prescribed for a different ailment twenty years earlier. More than two hours of time on the phone back and forth between the doctor, the pharmacy and the insurance company, with more reference numbers and dollar amounts than could be easily kept track of and Jack was exhausted: finally, the solution was clear and they were just waiting for final confirmations to have everything fall into place. Plus a $70 medicine co-pay, and three $40 office visits later.
Jack is educated, middle class, employed and has insurance and pharmacy coverage. In order to get treated for a common STD, he will be spending $190 out of pocket, plus the time and energy of working/fighting with three different offices to make this happen. He has never shown a symptom of syphilis.
If this process is so difficult and time consuming, so emotionally draining and humiliating for him, he also remembers that he must have it a lot easier than folks without insurance, or folks without doctors who are willing to fight insurance companies or think creatively.
And that, my friends, is why we’re having a new epidemic of syphilis. Not because people are being naughty or dirty (come on, it’s been around for thousands of years – a curable STD is part of the cost of sexual activity, and it only takes once.)
We need to simplify the treatment process, destigmatize the counseling process, reduce the costs on basic drugs, and not treat proactive patients like they’ve done anything wrong.
Until we do that, we’re going to be keeping people away from treatment by making it to expensive, too exhausting and too maddening to navigate the process.
This morning I heard the news that the Robert Mapplethorpe residence on E. 17th Street would be closing by the end of the year. To some of my friends and colleagues, this news, coming on the heels of the closing of Rivington House at the end of the summer, is troubling. The Mapplethorpe Residence and Rivington House were opened to serve the long-term nursing care needs of people who were living with AIDS: people who were hardest hit by an army of opportunistic infections that required intensive, lifelong solutions. Today, the numbers of people living with HIV/AIDS in New York City and requiring that level of care has plummeted to the point that neither Rivington House nor the Mapplethorpe Residence were fully occupied. Numerous theories and stories have circulated about the motives for closing these centers (Is the real estate they inhabit more valuable than the program? Has mismanagement of funds created a situation where the cash is more important than the conscience? Are people living with AIDS just not important enough anymore?), but I think there’s a different question to be asking.
Has the HIV/AIDS Industry become a victim of its own success?
That’s a dangerous question to ask, because it overlooks the human element. There are still 50,000 new diagnoses of HIV every year, and despite tens of millions of dollars spent in prevention education and outreach, that number has remained fairly constant. HIV, in spite of efforts to the contrary, is in no danger of going away, is in no danger of being cured, and is still creating challenges, daily challenges, in the lives of over one million Americans, and tens of millions of people worldwide.
However, if you take a step back, and look at the epidemic from 30,000 feet, particularly in areas of the world like New York City where despite a slow start in the 80’s, have become places with amazing supports and services, you will see a different picture. Last Friday, Iris House, an organization founded in 1992 to serve the needs of women living with HIV, released a report that its client base has a viral suppression rate of 250% of the national average, where 5 in 6 clients have improved health outcomes, where more than 50% of those with AIDS diagnoses have dramatic health gains, and where less than one in ten individuals diagnosed with HIV ever receive an AIDS diagnosis. These statistics show tremendous progress in the war against HIV/AIDS. We are looking at a population that is greatly benefiting from supportive services, from case management, and from education on topics ranging from treatment adherence to diabetes prevention. When individuals are able to address their health care challenges and have the support and education to improve their own outcomes, they may never need a facility like Rivington House or the Mapplethorpe residence.
New York City and its plethora of AIDS Service Organizations are succeeding in their work. No, there’s no cure yet, and until there is, we still have to provide critical support to people who may not have the resources to manage on their own, but here in this city, for the most part, there are options and successes.
Isn’t it the dream of everyone working on a particular disease or condition to find solutions that no longer require our services?
If medical technology has advanced enough that fewer and fewer people need long-term intensive nursing care for AIDS related conditions, isn’t that a good thing? And if they can be cared for in spaces that have a broader range of services, where broader needs can be met more efficiently (yes, I’m talking human efficiency as well as financial efficiency: healthcare is a business), shouldn’t we welcome that? Rivington House and the Mapplethorpe residence were both born of a time when no one wanted people living with AIDS mixed into the general population. Rather than looking at their closures as failures, shouldn’t we see them as happy circumstances where isolation and stigma are no longer part of the experience of aging with AIDS?
It’s true that the residents of these facilities became each others’ families, and as someone who has performed at Rivington House with Lifebeat’s Hearts and Voices program, I know how close the residents and the staff are to each other. It’s never happy when a family is broken apart, but in the greater face of the successes this represents, if that’s the greatest problem, it’s one we’re going to have to learn to live with.
Thoughts, observations and comments from Witti Repartee, hostess, fundraiser, bon vivant and...well, lots else.