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The struggle to maintain access to lifesaving HIV meds

Trump proposing dangerous changes to Medicare Part D

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(Scanning electromicrograph by NIAID via Flickr)

When I was diagnosed with HIV in 1985, there were no medications to treat it. Not one. I never imagined that the medical community would achieve the advancements in HIV treatment and prevention we see today. In fact, President Trump actually proposed a plan in his State of the Union address to end the HIV epidemic in America by 2030. This lofty goal would be thwarted, however, by proposed changes to Medicare Part D that jeopardize the advancements we’ve made in the fight against HIV.

I have lived with HIV for almost 35 years. I’ve dealt with more doctors, stubborn insurers, and drug formulations than I care to count. But I do it to stay alive. What other choice do I have?

By 1995, 10 years after I contracted the virus, AIDS claimed as many as 50,000 lives per year. Today, fewer than 7,000 people die from HIV related causes. And recent data shows that although there are nearly 19,000 people living in Baltimore with HIV and 15,000 in D.C., less than a quarter of all new D.C. HIV diagnoses develop into an AIDS diagnosis within three months. This means that approximately 80% of these individuals newly diagnosed with HIV are taking steps to control and reduce their viral loads.

Becoming an “empowered” patient with consistent and unimpeded access to my medications through Medicare Part D has kept me alive. Had I not been relentless in my pursuit of the latest research, drug trials, and newly approved treatment regimens — while also educating my own providers — I likely would have been counted among the nearly half million Americans who perished from AIDS between 1981 and 2000.

For many years after my diagnosis, insurance companies rejected my prescriptions or tried to force me to rely upon medications that had been proven ineffective. When I became disabled due to HIV, my newfound access to Medicare Part D changed all of that. 

Medicare Part D and its protections against insurer interference finally brought some certainty to my treatment plan. With reliable access to effective medication, I was suddenly free to divert my time and energy away from day to day survival and focus it towards my friends, my family, and a better quality of life.

Unfortunately, the Trump administration is proposing a change to Medicare Part D in a way that would remove many of these certainties. The change — in the name of reducing drug pricing — removes the protected class status for HIV medication and would expose hundreds of thousands of people living with HIV to “step therapy” and “prior authorization.” 

Step therapy allows insurers to require Part D enrollees living with HIV to prove that less effective medications don’t work before agreeing to cover more effective, but more expensive treatments, as determined by our doctor. Prior authorization forces doctors to pre-clear prescriptions for certain HIV medication with insurers before the insurer agrees to cover the costs, a time consuming and complicated process that delays treatment.

As someone who has failed multiple drug categories over the years, I know these changes are dangerous because they would force me to fail on one medication before trying another. I need highly customized, effective therapies to keep my viral load in check. When a viral load is rendered undetectable, I cannot transmit HIV to someone else. Successful treatment, then, also prevents new HIV infections.

Interfering with access to effective treatment formularies for Medicare Part D enrollees under the guise of pricing reductions will cause more harm than good. In fact, a recent study published in the American Journal of Managed Care estimates that there would be 16,200 more cumulative deaths by 2025 if more restricted treatment options are allowed to take effect.

The priorities for people living with HIV are stark. First you pay your insurance premiums, then you pay your prescription costs, and then you pay for food and housing. That is how important our medications are to our survival. For us, failure is not an option. We must fight this new proposal that would end guaranteed access to the treatments we need to stay alive.

Mark S. King is an award-winning author, and HIV/AIDS advocate who has been involved in HIV causes since testing positive in 1985. His blog, My Fabulous Disease, was awarded the NLGJA’s “Excellence in Blogging” honor in 2014 and 2016. 

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Frank Kameny’s legacy lives on

May 21 marks pioneering activist’s 100th birthday

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May 21 would have been Frank Kameny's 100th birthday. (Washington Blade photo by Michael Key)

A first generation American from Queens, N.Y., Kameny was a decorated WWII veteran. With a prodigious 148 I.Q., he earned a Ph.D. in astronomy from Harvard University. In 1957 he was recruited by the Army Map Service, a pioneering agency in space exploration. 

In 1953 in the wake of McCarthyism, President Eisenhower issued Executive Order 10450 that prohibited homosexuals from military or civilian employment. Having nothing to do with workplace conduct, the Army learned that Kameny might be a homosexual. When confronted, he equivocated and was terminated. Unlike then thousands of other homosexuals terminated from government employment, Kameny fought back.

He took on the military and Civil Service Commission including being the first openly gay man to file an appeal about gay rights to the U.S. Supreme Court. He helped co-found and chair the Mattachine Society of Washington, the first gay rights organization in the nation’s capital.

He wrote letters to, among others, FBI Director J. Edgar Hoover. He founded and chaired the Eastern Conference of Homophile Organization, the nation’s first regional gay organization.

In the 1960s homosexuality, even with a consenting adult in the privacy of one’s bedroom was criminal. The police entrapped and extorted gay men. The American Psychiatric Association classified homosexuality as a mental illness. A bar could lose its license if there was more than one homosexual in their establishment. Homosexuals were considered dangerous, deviant and demented.

Kameny coined the phrase “Gay Is Good.” He organized picketing called Annual Reminders each July 4 from 1965 to 1969 at Independence Hall. The picketers were the first to call for gay equality. The 1965 Annual Reminder had 39 activists making it then the largest demonstration for gay rights. In the mid-1960s the country had an estimated 300 gay and lesbian activists.

He published a newsletter that became the Washington Blade, now the nation’s oldest LGBTQ weekly newspaper. Kameny and Barbara Gittings, the mother of the movement that demonstrated for the right to be heard at the 1971 American Psychiatric Association meeting. Their panel at the 1972 meeting with a masked psychiatrist using a pseudonym and voice modulator was so impactful that the APA created a panel to determine if homosexuality as a mental illness was based on science or discrimination. In 1973, that classification was removed.

He advised gays and lesbians who were the subject of discharge from federal government service. He identified test cases and referred them to the ACLU, Lambda Legal and other counsel. Slowly, but surely those cases began a process for LGBTQ equality.

His efforts led D.C. to be the first city to overturn its sodomy criminal laws. He helped found the first national LGBTQ organization, the North American Conference of Homophile Organizations. His efforts laid the groundwork for HRC and National LGBTQ Task Force.

After Stonewall in June 1969, he chaired a meeting of NY, Philadelphia and D.C. activists that authorized and helped organize to help remember Stonewall the first New York Pride Parade. He believed that Stonewall could be the movement’s Boston Tea Party. He marched in that 1970 parade holding a picket emblazoned with “Gay Is Good.”

He was the first out person to run for Congress as the D.C. delegate. Money left over from his campaign was used to fund the first gay rights television commercial. In July 1975, he was the first to be advised by the Civil Service Commission that it would eliminate homosexuality as a basis for not hiring or for firing a federal civilian employee. In 1977, he attended the White House’s first meeting with gays and lesbians.

Kameny died on Oct. 11, 2011, National Coming Out Day. He lived to see marriage equality approved in several states. He attended the signing by President Obama of the repeal of “Don’t Ask, Don’t Tell,” which enabled gays and lesbians to serve openly in the military. Kameny is buried in the Congressional Cemetery. On his tombstone is inscribed “Gay Is Good.” Over 70,000 of his documents are in the Library of Congress and picket signs from the pioneering demonstrations are housed in the Smithsonian Institution.

On May 21 LGBTQ national organizations gather in front of the Supreme Court. One hundred activists will each hold a candle for his 100th birthday. Fifteen national leaders will engage in picketing similar to the 1965 picketing at the White House and Independence Hall. They will honor Frank Kameny; celebrate the 10th anniversary of marriage equality (Obergefell v Hodges, 2015); and push back on those who would attempt to render us invisible, deny our history and undermine our equality. We will remember the nation’s loss when it fired a Harvard Ph.D. in astronomy because of his status as a homosexual. History repeats itself. This month the U.S. Supreme Court allowed the federal government to terminate transgender servicemembers solely because of their sexual orientation. How far we have come. How much farther we have to travel.

Malcolm Lazin is the national chair, Kameny 100. He is the executive director, LGBT History Month and executive producer of three LGBTQ documentaries including Gay Pioneers. He was an adjunct professor of LGBT History and Rights at New College of Florida. www.kameny100.org

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Returning to Alcatraz: Memory through a queer lens

Trump would like to ‘rebuilt and reopen’ notorious island prison

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Alcatraz Island in San Francisco Bay (Photo courtesy of Estuardo Cifuentes)

When I arrived at Alcatraz Island, what I felt wasn’t curiosity — it was discomfort. Standing before such a photogenic landscape, something felt off. As if the place was trying to erase what it truly was: a mechanism of punishment, a machine built to control and define who should be excluded. I couldn’t walk those corridors without thinking about what this place represents for so many of us: a symbol of how the state has decided, time and again, that some lives matter less.

As a queer person, what struck me wasn’t just the past Alcatraz holds — but how that past is still alive in today’s policies. As I looked into the empty cells, I thought about the many LGBTQIA+ people who have been punished simply for existing. People like Frank Lucas Bolt, the first prisoner of Alcatraz — not convicted for violence, but for “sodomy,” a label the legal system used to persecute gay men.

He was not the only one. For decades, being gay or trans was enough to end up in a federal prison or a psychiatric hospital. Not for a crime, but for defying the norm. The legal and medical systems worked hand in hand to suppress any deviation from prescribed gender and sexuality. In prisons, queer people were subjected to physical punishment, solitary confinement, and even conversion therapy. Alcatraz was not an exception — it was one of the system’s most brutal epicenters.

But the queer memory of this place isn’t found in tourist brochures. To uncover it, you have to read between the lines, search through archives that are never taught in schools, and listen to those who still carry the scars. Walking among those walls, I realized that remembering isn’t enough — we have to contest the meaning of memory itself. What isn’t told, is repeated.

That’s why, when a few weeks ago President Trump said he’d like to “rebuild and reopen Alcatraz,” I didn’t take it as just another symbolic gesture. I took it as a warning. In times of crisis, punishment becomes an easy offer: lock them up, expel them, make them disappear. And in that narrative, queer, migrant, and racialized bodies are always the first to be targeted.

The danger isn’t just in the idea of a reopened prison, but in what it represents: The longing to return to a social order that was already deeply unjust. The nostalgia for “tough-on-crime” prisons is the same one that criminalizes unhoused people, persecutes migrants, and stigmatizes queer and trans youth in public spaces. Anyone who dreams of locking up more people isn’t thinking about justice — they’re thinking about control.

In 1969, a group of Native American activists occupied Alcatraz for over a year. They did it to denounce land theft and the government’s betrayal of treaties. During their occupation, they painted a message on the island’s water tower: “Peace and Freedom. Home of the Free Indian Land.” That gesture was a radical reclamation of space, a way of saying: this island can also be a place of resistance.

Alcatraz holds many layers. It was a high-security prison, yes, but it also became the stage for one of the most powerful acts of civil disobedience in the 20th century. That tension still lingers. The question is not just what happened at Alcatraz, but what we want it to represent today. A renewed model of punishment — or a site of memory that helps us prevent more harm?

As I walked its halls, I couldn’t stop thinking about the migrant detention centers that are still full today. About trans people held in inhumane conditions. About arbitrary detentions. About those of us who, like me, crossed borders just to survive. The distance between that Alcatraz and our present is not as wide as we’d like to believe. The walls may change, but punishment still operates on the same bodies.

Standing before the empty cells, I felt what many must have felt there: the weight of abandonment, the state’s mark upon their body, the feeling that their existence was a problem. But I also felt something else: conviction. The certainty that we will no longer walk into those spaces in silence. That we will not let ourselves be labeled as “mistakes” or “deviants.” That if they try to lock us up again, they will find us organized, with memory, with dignity.

Alcatraz does not need to be rebuilt. It needs to be understood. And we — queer, racialized, migrant communities — need to transform that understanding into action: to push back against hateful rhetoric, to protect those still living under threat, and to tell our full stories. Let no one be punished again for being who they are. Let history not become a locked cell once more.

The views expressed in this article are solely my own and do not necessarily reflect those of my employer, colleagues, or any affiliated organization. They are shared from a personal perspective shaped by lived experience and advocacy work.

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Antipathy toward queer workers

Employers just don’t like non-passing trans people

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(Photo by Rawpixel .com via Bigstock)

Lately I’ve sensed a deep seated antipathy in the queer population toward fixing systemic issues that sabotage the wellbeing of the queer population. Much of this antipathy is centered around race: wealthy cisgender (and mostly white) gay men feel that much of their needs are taken care of, with the exception of the Trump administration potentially taking away their right to marry. Then, all of a sudden, when reports come out that gay marriage is in jeopardy, these wealthy gay men rally around the flag and start to care. But for the most part, they are busy with their well-off lives renting penthouses in Logan Circle or Dupont, going to mostly all-white gay toga parties, finding casual hookups on Grindr. Their lives are not entirely full of discrimination. They work in offices that celebrate, or at least tolerate, their identity. Because to these office places, a capable, well-dressed, cisgender gay man who knows his business field and can present tidily well is no threat to their corporate good or corporate advance. 

White cis gay men who come from lower socioeconomic backgrounds face a larger struggle: They might not be able to afford the wardrobe that fits an elite corporate culture; some middle or lower class folks can’t fit this mold. Moreover, they might not harbor the educational background to fit such job titles at Goldman Sachs, after all, Goldman is looking for Harvard MBAs. Indeed, they are looking for top-tier MBAs — a credential that very few queer people live up to. With poverty and lower socioeconomic class pervading the queer community, it’s hard to find gay or lesbian or — god forbid — trans folk who fit McKinsey’s mold and ethos of work. 

Queer people who don’t acquiesce to corporate culture — people who don’t have Ivy League degrees or the best MBA grads from Wharton or Yale or Harvard tend to apply to other jobs. At the lower end of the ladder, queer people who don’t strive to be top tier consultants work barista jobs or retail. I mention “lower end of the ladder” not to deride queer people who choose to be baristas or work in retail — it is their choice, and amazing pro-BLM and pro-Palestine and pro-working class movements originate from these kinds of work places. 

Yet other queer people settle for middle class jobs. Trans men who pass extraordinarily well as men become Realtors or insurance agents. Some even more become entertainers and singers and DJs; there are ample jobs available for trans people. Some drag queens or trans women like Laverne Cox shine bright on the national stage and become actresses that represent gender diverse women. And that is good for them. 

What I’ve found though is much antipathy toward our job struggle. Not necessarily antipathy from the queer population itself, but antipathy from employers who are hesitant to hire a trans man or a trans man who doesn’t pass well. Trans men who don’t pass are an enormous issue to employers. Employers just don’t like non-passing trans people. They pose a liability to them. They make companies feel uncomfortable. It’s going to take years–if not decades–for companies to just “chill” about gender nonconformance. Trans people harbor many excellent minds, be it in mathematics, physics, English, computer science, or the arts. 

It’s time that corporate America take a serious look at their queer workforce. Firing or denying someone employment because they don’t fit a certain gender mold is a cruel act. And this cruel act has gone on for far too long. There are some tales of getting it better. Most notably tech companies like Google or Amazon hiring gender nonconforming computer engineers to get the job done. They enforce an environment of respect and mutual aid. This trend needs to continue and grow. 

If it doesn’t then the trans workforce is left feeling bereft, lost in translation. This can’t continue forever. It’s time for change. 


Isaac Amend is a writer based in the D.C. area. He is a transgender man and was featured in National Geographic’s ‘Gender Revolution’ documentary. He serves on the board of the LGBT Democrats of Virginia. Contact him at [email protected] or on Instagram at @literatipapi 

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