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‘Right to Try’ bill will protect public health

Echoes of AIDS era seen in fight to access investigational drugs

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pills, medicine, Ryan White, health care, gay news, Washington Blade

(Photo by Pöllö; courtesy Wikimedia Commons)

At the height of the AIDS epidemic 25 years ago, only those lucky or well-connected enough had the opportunity to enroll in clinical trials that offered them hope for treatment, when they otherwise had none. But the widespread, unrelenting outcries of AIDS activists like myself spurred the Food and Drug Administration (FDA) to offer patients “expanded access programs” for a few drugs that were nearing formal approval and provided hope to AIDS patients.

Today, the voices of patients and advocates are needed again to give the terminally ill the chance to try to save their own lives.

Recently, the “Right to Try” bill unanimously passed the Senate with full bipartisan support. Now it awaits action in the House as S. 204. The bill codifies a right AIDS patients first demanded a quarter-century ago. It allows people with terminal illnesses access to investigational treatments that meet FDA safety standards but have not completed the arduous efficacy trials FDA requires for marketing. While 38 states have passed Right to Try bills, federal legislation is still needed to protect doctors from prosecution by FDA.

Other countries have more flexible regulatory policies. France’s lenient regulations allow 12,000 French patients access to investigational drugs every year. In the U.S., with five times the population of France, fewer than 2,000 per year make it through FDA’s complicated, lengthy, and expensive application process. A terminal patient is 30 times more likely to get investigational drugs in France than in the U.S. These figures belie FDA claims that the agency meets all needs for early access.

Current FDA application procedures create almost insurmountable obstacles for Americans trying to access investigational treatments. In desperation, many are driven to seek treatment abroad or try underground drugs that are useless, fraudulent or dangerous.

We’ve seen this before. While FDA did reluctantly begin offering expanded access programs during the AIDS epidemic, FDA’s foot-dragging spurred the growth of an AIDS drug underground that ensnared thousands of hapless patients. The award-winning film “Dallas Buyers Club” dramatizes patients’ desperation and heroism, though it downplays the dangers of underground drugs. When stories in the San Francisco papers forced FDA to test a knockoff of the drug DDC, its dosages were found to be inaccurate, which made them dangerous. Some samples contained no actual DDC, while others were adulterated. An activist friend who took another underground drug, trichosanthin, went into anaphylactic shock, almost killing him. Many of the sick grew worse experimenting with underground panaceas. FDA turned a blind eye to the buyers clubs because they provided a convenient safety valve that reduced community pressure on FDA to speed approval of legitimate pharmaceuticals.

Under mounting duress, the agency did grant early approval to protease-based antiretroviral drug cocktails. These quickly reduced AIDS deaths from more than 48,000 in 1995 to about 35,000 in 1996. By 2015 deaths had dropped to about 6,700. It is almost forgotten that AIDS activists and their doctors dragged FDA kicking and screaming into early approval. FDA proposed instead a scheme for “large simple trials” that could have delayed full approval several years. Such a delay would have cost tens of thousands of lives. Ironically, the AIDS activists who targeted FDA saved the agency from a catastrophic mistake it was dead set on making.

The dilemma of Americans denied access to investigational drugs is not peculiar to AIDS patients of a bygone era. Today’s patients with terminal cancer and rare diseases too often find they must leave America to try the newest treatments, if they can afford to leave. Even the prominent and highly educated are driven to try ineffective or dangerous remedies, as was the revered Coretta Scott King before her 2006 death in Mexico. America needs to make the right to try investigational drugs a civil right for all dying patients. Indeed, the right to try is part and parcel of the right to life.

FDA’s mission to protect public health would have been better served by respecting the rights of AIDS patients. These patients were at death’s door and only wanted a chance to live. Giving them that chance would have reduced the very real perils of underground knockoff drugs. But the FDA bureaucracy prioritized guarding its regulatory turf above respecting patients’ freedom to choose. Freedom won that time thanks to AIDS activists’ determination, but its victory is not assured. To ensure patient freedom now and in the future, Congress must pass Right to Try.

 

James Driscoll, Ph.D., a longtime AIDS activist, was an early leader in the fight for access to AIDS drugs. He is currently Healthcare Advisor to Liberty Education Fund.

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Sexting with younger guy has me asking: How queer am I?

Reflections on LGBTQ life in 2024

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Jake Stewart is a recovering Hill staffer based in D.C. In addition to writing, he barbacks at the Little Gay Pub."

Once upon a time, not all that long ago, a man sexted another man. 

There were words. There were pictures. There were filthy questions and even filthier responses. You know, the way a good sexting convo ought to be, for those who dabble. 

One man was 33. The other, 24. And while it comes as no shock that I was the 33-year-old, it may be more surprising to learn it was the 24-year-old who grabbed the reins. 

What kinks you into? he asked. 

Shit – I didn’t know. I barely even bottomed before the pandemic, and now I had to know my kinks? 

I’m open, I replied, evasively. You? 

His response left me coughing: “Love musk sweat ws public group rough bb verbal bate edge roleplay and very open-minded.” 

Now I’m no prude (in fact, many would call me a downright whore) but this young man articulating his kinks and fetishes in such detail blew my mind. When did he learn what he liked? At 24, all I wanted was to top a guy and leave with as little communication or attachment as possible. At 33, I wasn’t sure what a few of the items he listed even meant.  

Perhaps I shouldn’t be surprised when young men — and the younger generation across the LGBTQ spectrum in general — have already figured out their sexual interests. I arrived in D.C. from Idaho in 2008 as a fresh-faced 18-year-old; I came out three years later in 2011. Attitudes toward queerness have shifted substantially since then, and these days it is undeniably easier for younger people to explore their sexual and gender identities (which, by the way, is fantastic). 

But this conversation left me wondering: What do I like? I haven’t sought out that many new sexual experiences, and while fetishes, kinks, and sexual desires can seem trivial, they’re inextricably intertwined with gender and relationships. If I can’t articulate what I like in the sack (or in public, if I dare), then how do I know what I’m seeking from a long-term partner, or if that’s even what I want? 

As soon as I came out, I thought my job was done. All I needed after that was to snatch up a cutie and settle down. Instead, my identity centered on building my career in politics, where sexual openness isn’t as appreciated. I, like many D.C. queers around me, moved here bright-eyed, bushy-tailed, and ready to change the world for good. 

Then came a tough lesson: Just because I wanted to improve the world didn’t mean people wanted me to. I was inexplicably fired from not one job but two, and suddenly the do-gooder in me grew jaded. The career I dedicated years to was suddenly ripped from my hands, and I became so disillusioned I didn’t even want it back. Oh, and the cherry on top: My boyfriend dumped me two days later. 

Once everything unraveled, I wondered: Was the me of the past the me I truly wanted? Or was I reflecting back what I thought everyone wanted me to be? 

Well, a few major meltdowns and an extended slut phase later, my life couldn’t be more different. I now work at a new gay bar in town to support myself, and I’ve given myself space to pursue the arts. This former straight-laced, type-A, tightly wound gay abandoned the safe track and he couldn’t be more terrified. He also couldn’t be more excited. 

But losing my old career also left an existential-sized hole in my identity. So, as I sexted this 24-year-old with newfound awareness of my limitations, I decided this must change. 

How? As I said, I work at a gay bar in one of the queerest cities in America. Now more than ever I’m surrounded by those who are LGBTQ and every shade in between. Why not learn from those around me, whether younger, older, or around the same age, but whose experiences are no less queer? Why not carve out time to have in-depth discussions and discover what the possibilities are? 

If being queer means to go against the established norms of gender and sexuality, then there’s still plenty of territory for me to explore. No longer can ‘bottom’ or ‘top’ be my only options. 

So, the purpose of this column – aptly titled Queer Quest – is to capture my exploration of queer identity. It’s not to teach you as much as it is to teach myself, and you can either learn alongside me or simply be entertained. At the very least, I’ll have a series of portraits on what it’s like to be queer in the mid 2020s. At most, I’ll have a better understanding of who I am as a queer person. 

Then maybe, just maybe, I’ll become a better sexter. 

Jake Stewart is a D.C.-based writer.

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What will you do to make Pride safe this year?

Anxiety reigns among American Jews after Oct. 7

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(Washington Blade photo by Michael Key)

Each year, hundreds of thousands of Jews and supporters of Israel attend Pride marches. With a few exceptions, these spaces have always been safe and welcoming for the broader Pride community. 

But this year is different. 

For American Jews, anxiety reigns as we head into this Pride season. The appalling rise of antisemitism since Oct. 7 forces us to ask difficult questions. As many Jews increasingly feel alienated and excluded from progressive spaces, we’re left to wonder: If I wear a Jewish symbol, march with a Jewish group, or wave a rainbow flag adorned with the Star of David, will I be safe at Pride?

Even before Oct. 7, LGBTQ Jews had plenty of reason to feel trepidation about their safety at Pride. From blanket bans on Stars of David at past Pride gatherings to antisemitism on display at the recent Sydney Pride, too often Jews feel forced to choose between their LGBTQ and Jewish identities and hide their connection to Israel.

Since Oct. 7, terms like “apartheid,” “genocide” and “Zionism equals racism” are increasingly thrown around casually, often without a nuanced understanding of their impact or the realities they oversimplify. This rhetoric not only alienates but also endangers Jewish queer people. It makes us feel emotionally unsafe. It increases the chances that we will be physically unsafe as well. 

We must not allow the Israel-Palestine conflict to be imported into Pride.

I will always remember the euphoria of the first Pride rally I attended. I was barely 18 years old, in a crowd of people of all ages, races, genders and gender orientations — and they were like me. Queer. It felt safe. It was the first time I experienced that feeling of safety, and it will always stay with me. 

Like Pride events everywhere, it was a vibrant, colorful space for LGBTQ people to celebrate our true authentic selves, without fear or reservation.

But that feeling of safety wasn’t shared by everyone in my small New England town. I soon noticed a few people scattered throughout the crowd wearing paper bags over their heads, with eye holes so they could see but not be seen. I later learned that those faceless people were teachers who, in those days before civil rights protections, needed to protect their identities and their careers. 

They did not feel safe. Will Jews and those who are connected to Israel feel safe this year?

The history of Pride is a testament to courage in the face of adversity. It wasn’t long ago when attending Pride events was a defiant act against societal norms, where participants like those teachers faced tangible threats of discrimination, ridicule and even violence. Even today in some places, our queer community still navigates a gauntlet of hatred as we try to celebrate who we are.

It’s crucial to recognize that within the Jewish community, there is a wide spectrum of views on the Israeli-Palestinian conflict, including many who are deeply committed to advocating for Palestinian rights. In fact, many of the 1,200 innocent Israelis murdered on Oct. 7 were Zionists who devoted their lives to reconciliation and peace with their Arab neighbors.

We are at a pivotal moment, one that demands action: What can we do to ensure Pride remains a safe space for everyone, including Jewish participants?

It’s imperative that Pride committees around the country proactively address these concerns. They must implement training programs focused on de-escalation and fostering an environment of understanding and respect.

As individuals who stand in solidarity with the values of Pride, each of us must consider our role in this effort. Will you march alongside those of us who feel vulnerable, offering your presence as a shield against intolerance? Will you engage in dialogues that challenge the importation of external conflicts into Pride, advocating instead for a celebration that unites rather than divides?

The true test of inclusivity at Pride lies not merely in welcoming a diverse crowd, but in ensuring that every participant feels safe and valued. If we remain indifferent to the vulnerabilities faced by Jewish queer people this Pride season, we will fall short of the very ideals of inclusivity and solidarity that Pride stands for.

Just as we expect schools to protect trans and nonbinary students like Nex Benedict, we have a responsibility in the LGBTQ community to ensure that people can carry an Israeli flag or a Palestinian flag, wear a yarmulke or a hijab and be safe.

As we look forward to this year’s Pride, let us commit to making it a space where safety is not a privilege afforded to some but a right enjoyed by all. Let’s engage with our local Pride committees, advocate for comprehensive safety measures and stand in solidarity with those who feel at risk. 

Only then can we celebrate the true spirit of Pride, rooted in love, acceptance and the unwavering belief in equality for all.

Ethan Felson is the executive director of A Wider Bridge.

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How to protect your sobriety on St. Patrick’s Day

Celebrate with a supportive friend and carry a mocktail

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Sobriety can be challenging, whether you overcame alcohol or drug addiction or chose to abstain from alcohol for a healthier life. Holidays like St. Patrick’s Day can serve as a reminder of the past or could be looked at as another day. 

Many celebrate St. Patrick’s Day sober, as there are generally family-friendly gatherings, community events, or even sober celebrations. If you have concerns about your sobriety, there are practical tips you can use to protect it on St. Patrick’s Day. 

For instance, remind yourself why you are sober, and don’t do it alone. You can still have fun and celebrate but do it with other sober people. Everyone has their reasons for stopping drinking; remind yourself of those reasons and hold yourself accountable.  

Know your triggers; it doesn’t matter if you are a recovering addict or have removed alcohol from your life. Be cautious around possible triggers that pose a challenge. Most people in this situation choose to skip the bar and find something fun to do or go to a sober St. Patrick’s Day celebration. 

Keep a non-alcoholic drink or mocktail in your hand. People will not bother you to ask if you want a drink if you already have something to sip on, like a mocktail. This also leads to planning how to say no. You will encounter social pressure if you go to a bar on St. Patrick’s Day. It’s unavoidable. It’s wise to practice ways to refuse alcohol. 

Finally, if all else fails, take a walk outside if you feel overwhelmed. The most straightforward solutions are usually the best. Remove yourself from any situation you know will lead to relapse. This is also why it’s essential to be with a sober friend or loved one; there is accountability and someone to lean on.

The benefits of being sober are plentiful, along with the numerous health perks, such as better quality sleep, more mental alertness, and lessened anxiety or depression. Yet, there is one benefit that is not necessarily always spoken about. 

Being sober on St. Patrick’s Day or any day removes all chances of impaired driving. Unfortunately, days that promote heavy alcohol use may increase the chances of drunk or drugged driving. For example, in Washington State, impaired driving has been involved in roughly half of fatal crashes for decades. In 2022, 52% of traffic fatalities involved an impaired driver, according to the Traffic Safety Commission. 

Moreover, drivers ages 21 to 30 make up one-third of impaired drivers in fatal crashes, and another 20% are ages 31 to 40. If you are celebrating St. Patrick’s Day sober, take the necessary precautions and look out for one another. If you choose to consume alcohol, drink responsibly, know your limits, and do not drink and drive.

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