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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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Opinions

Response to a personal attack against me

Writers should stick to facts and reason

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(Photo by sqback/Bigstock)

I was disappointed when the Blade didn’t publish my response to a personal attack on me in a column by Hayden Gise, in last week’s print edition. They did publish it online. To be clear, I have no problem with people disagreeing with my columns and opinions. That is absolutely fair. But when they get into personal attacks, it often means they don’t have enough to say about the ideas they are trying to criticize. 

In a recent column ‘Why the Democratic Socialists of America are right for D.C.,’ the author decided to attack me personally. Here is the response I wrote to her column: 

“I am responding to a column by Hayden Gise who says in her column she is a transgender, lesbian, Jewish, Democratic Socialist, and supports having the Democratic Socialists of America (DSA) in Washington, DC. She is definitely as entitled to her view on this, as I am to mine. However, I was surprised she clearly felt it important to use the column to attack me personally, without even knowing me. What she didn’t do is respond to the issues in the DSA platform I wrote having a problem with, and which I asked candidates endorsed by the DSA to respond to. 1. Are they for the abolishment of the State of Israel? 2. What is their definition of a Zionist? 3. What is their definition of antisemitism? 4. Will they meet with Zionist organizations? 5. Do they support BDS? One needs to know when a candidate claims they are only a member of the local DSA, according to the DSA bylaws no person can be a member of a local DSA without being a member of the national organization. So Hayden Gise has a little better idea of who I am she should know: I was a teacher and a union member. I worked for the most progressive member of Congress at the time, Bella S. Abzug (D-N.Y.), and supported her when she introduced the Equality Act in 1974, to protect the rights of the LGBTQ community, and have fought for its passage ever since. I have spent a lifetime fighting for civil rights, women’s rights, disability rights, and LGBTQ rights. I have no idea what Hayden Gise’s background is, or what her history of working for the causes she espouses is. But I would be happy to meet with her to find out. But she should know, I take a back seat to no one in the work I have done over my life fighting for equality, including economic equality, for all. So, I will not attack her, as I don’t know her, and contrary to her, don’t personally attack people I don’t know much about. 

“I have, and will continue to attack, what the government of Israel is doing to the Palestinian people, and now to those in Lebanon and Iran. I will also attack the government of my own country, and the felon in the White House, and his sycophants in Congress, for what they are doing to our own people, and people around the world, and will continue to work hard to change things. However, I will also continue to stand for a two-state solution with the continued existence of the State of Israel, calling for a different government in Israel. I also strongly support the Palestinian people and believe they must have the right to their own free state.”

I have not heard from Gise, but I hope she knows that since she wrote her column indicating her support for Janeese Lewis George for mayor, her preferred candidate has attended a birthday party to celebrate a person who still refers to gay people as ‘fags.’   

We should not personally attack people we don’t know as a way to criticize their views on an issue. Once again, I have no problem with people disagreeing with what I write, and having the Blade publish those contrary columns. But a plea to all who disagree with any columnist, or story: disagree with the issues and refrain from making personal attacks on the writer. That actually takes away from whatever point you are trying to make. 


Peter Rosenstein is a longtime LGBTQ rights and Democratic Party activist. 

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Opinions

Science said stop; the Supreme Court said no

What Chiles v. Salazar means for LGBTQ health

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(Washington Blade file photo by Michael Key)

Imagine if researchers found that coffee drinking increased your risk of death by more than 50%. The public health response would be immediate – regulations, warnings, a swift mobilization of policy to match the evidence. We would act, because protecting people from documented harm is what evidence-based policy exists to do.

The same logic is why Colorado banned conversion therapy. The science was clear: research from The Trevor Project and others shows that exposure to conversion therapy increases suicidal ideation among LGBTQ+ youth, and more than doubles suicide attempts for transgender youth. Every major medical organization in the country – the American Medical Association, the American Psychological Association, and the American Academy of Pediatrics – has condemned the practice. 

Colorado looked at the evidence and did what public health is supposed to do. It intervened. 

On March 31, 2026, the Supreme Court struck down that intervention 8-1 in the Chiles v. Salazar case, ruling that conversion therapy is protected speech.

This decision should alarm anyone who believes that science has a role in protecting human lives. The court did not dispute evidence. It did not produce contradicting research or question the methodology of the studies Colorado relied on. Instead, it decided that the ideological underpinnings of conversion therapy deserve more constitutional protection than the children being harmed by it. In doing so, it severed the fundamental link between what science tells us is dangerous and what the law is willing to prohibit. 

That severance has consequences far beyond Colorado, as Supreme Court Justice Ketanji Brown Jackson noted in her dissent. More than 20 states and Washington, D.C. have enacted conversion therapy bans. The court majority’s reasoning – that regulating talk-based practices constitutes censorship – hands challengers a blueprint. The scientific consensus that built those protections did not change on March 31, but its power to hold them in place did.

For LGBTQ+ public health researchers like us, this ruling is a reckoning. And a personal one. Both of us came to public health because it offered a way to ask questions that matter: How can we help people live safe, healthy, and happy lives?

As a Ph.D. student and an assistant professor focused on LGBTQ+ health, we have been energized by the possibility that rigorous research could inform policies that protect LGBTQ+ people. The Chiles v. Salazar ruling forces us to recognize something uncomfortable: the possibility of research driving policy is real, but it is not automatic. Evidence reaches policy only when researchers advocate to put it there. As it turns out, scientific evidence itself is not enough. 

This means the work of LGBTQ+ health researchers cannot stop at the journal article. It has to extend into the spaces where policy is actually made and public opinion is actually influenced. Researchers must work alongside educators, communicators, and community organizers to make evidence impossible to ignore or misrepresent. 

As Sylvia Rivera observed in 1971, “our family and friends have also condemned us because of their lack of true knowledge.” More than 50 years later, misinformation about conversion therapy, gender-affirming care, and LGBTQ+ health still fills the gap that researchers leave when they stay silent.

We also want to say this directly to LGBTQ+ young people: Science has not abandoned you. The evidence of your worth, your health, and your right to be protected is overwhelming and it is not going anywhere. The researchers, clinicians, and advocates who built that evidence are still here and still working to ensure it translates into the protection you deserve. 

The Chiles v. Salazar ruling is a serious setback. But it is not the end of the argument.

Science has shown us how conversion therapy causes harm. It has shown us clearly, repeatedly, and with the backing of every credible medical institution in the country. The Supreme Court chose to look away. The only response to that is to make looking away harder. To build a public, cross-sector, science-informed movement that refuses to let evidence be sidelined when lives are on the line.

The evidence is on our side. Now, we have to make sure it counts.


Vincenzo Malo is a Health Services Ph.D. student at the University of Washington’s School of Public Health who studies affirming health systems. Dr. Harry Barbee is an assistant professor in the Johns Hopkins Bloomberg School of Public Health whose research focuses on LGBTQ+ health, aging, and public policy.

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Eswatini

The emperor has no clothes: how rhetoric fuels repression in Eswatini

King Mswati III’s anti-LGBTQ comments can have deadly consequences

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King Mswati III (Screen capture via Eswatini TV/YouTube)

In an absolute monarchy, the words spoken by the sovereign can swiftly become a baton striking a citizen. When King Mswati III speaks, his words do not simply drift into the air as political “opinion”; they often quickly turn into, sometimes violently, state policy. This reflects the reality of Eswatini, where the right to freedom of expression, including the right to hold dissenting political views, is increasingly being systematically eroded by the very voice that claims to uphold “traditional values.”

To understand the current crisis facing the LGBTIQ+ community in Eswatini, one must view it through the lens of a broader strategy: the weaponization of culture to justify the erosion of democratic institutions, the rule of law, and human rights protections. As observed across Africa, from the streets of Harare and Dar es Salaam to the parliamentary courtrooms of Dakar and Kampala, African leaders are increasingly using the marginalised as an entry point to dismantle civil society. In Eswatini, this strategy has manifest its most brutal expression in the king’s recent harmful rhetoric concerning sexual orientation and gender identity.

The danger of the king’s words lies in how the state apparatus interprets them as a divine mandate for persecution. Recently, we have seen this “Rhetoric-to-Policy Pipeline” operate with chilling efficiency. Shortly after the Minister of Education made public vitriol against the existence of LGBTIQ+ students, reports emerged of children being expelled from schools. In a country where the king is culturally and traditionally called the “ingwenyama” (the lion), the bureaucracy acts as his pride; when leadership suggests that a particular group is “un-African” or “deviant,” the machinery of the state, along with the emboldened segments of the public, moves to purge that group from society.

For an openly gay man who has dedicated most of his adulthood to advancing equality and dignity for all, especially marginalized communities, these are not merely policy changes; they pose existential threats. When a powerful leader speaks, they offer a moral shield for the dogmatist and a legal roadmap for the policeman. In Eswatini, where political parties are banned, and the “tinkhundla” system (constituency-based system) — a system that systematically silences dissent and favors those aligned with the sovereign — is celebrated as the sole “authentic” form of governance, any identity that falls outside the narrow, state-defined “tradition” is seen as treason. By branding LGBTIQ+ rights as “ungodly” and essentially unwelcome in Eswatini, the monarchy effectively views the mere existence of queer Swazis as a subversive act against the crown.

The most harrowing example of this pattern is the assassination of human rights lawyer Thulani Maseko in January 2023. Maseko’s murder did not happen in isolation. It followed a period of heated rhetoric directed at those calling for democratic reforms. The king had publicly warned those demanding change that they would face consequences. On the evening after the king had said, “[t]hese people started the violence first, but when the state institutes a crackdown on them for their actions, they make a lot of noise blaming King Mswati for bringing in mercenaries,” Maseko was shot dead at his home in front of his family.

The parallel here is unmistakable. When the king targets the LGBTIQ+ community with his words, he is aiming at the most vulnerable. If a world-renowned human rights lawyer can be silenced following royal condemnation, what chance does a queer youth in a rural area stand when the king’s words reach the local chief or school head? This is what I call “Chaos as Governance”: a state where the law is replaced by the monarch’s whims, leaving the population in a constant cycle of managed chaos that renders collective opposition nearly impossible. Despite strong condemnation from the organization I founded, Eswatini Sexual and Gender Minorities (ESGM), recent reports already suggest growing support for the rhetoric shared by the king, indicating treacherous weeks and months ahead for ordinary queer people in Eswatini.  

The monarchy’s defense of these actions is almost always based on “African tradition.” As Mswati has shown, the ban on political parties and the suppression of minority rights are framed as a return to indigenous governance, the “tinkhundla” system. But we must ask: whose culture is being defended? Is it a culture that historically valued communal care and diverse social roles, or is it a modern, imported authoritarianism cloaked in the robes of the ancestors?

When he uses his platform at the “sibaya” (traditional gathering) to alienate a segment of his own people, he is not engaging in dialogue; he is delivering a monologue of exclusion. This weaponized version of culture serves a dual purpose. First, it offers a “neocolonial” defense against international criticism, portraying human rights as a foreign threat. Second, it creates an internal enemy, the “terrorist” political dissident or the “immoral” LGBTIQ+ person, to distract from the fact that nearly two-thirds of the population live below the poverty line. In contrast, the royal family resides in obscene luxury, acquiring fleets of expensive vehicles.

The silence of Eswatini’s neighbors worsens its situation. The Southern African Development Community (SADC), a regional organization ostensibly committed to democracy and human rights, has repeatedly allowed Mswati to evade accountability. By agreeing to remove Eswatini from the Organ Troika agenda at the king’s request in 2024, SADC sent a message to every authoritarian in the region. If you conceal your repression behind the guise of tradition, we will not intervene.

The call for freedom of expression, including LGBTIQ+ rights, is a fundamental human right vital for safety and dignity. It demands that a child should not be expelled from school because of who they are. It insists that a lawyer should not be murdered for expressing their beliefs. It states that a king’s word should not be a death sentence. We must resist the “politics of distraction” that portrays the fight for minority rights as separate from the fight for democratic reform. The dissolution of political parties in Burkina Faso, the attack on lawyers in Zimbabwe, and the criminalization of advocacy in Senegal, Tanzania, and Uganda are all parts of the same pattern. They reflect a leadership class that fears its own people.

It is time for the African Union and SADC to decide whether to uphold the ideals of their lofty charters or to prioritize political convenience across Africa. For the people of Eswatini, improving livelihoods and human development can only occur when the king’s words are limited by a constitution that protects every citizen, regardless of whom they love or how they pray. Until then, the chaos is not a failure; it is the purpose. The monarch’s word may be law today, but the universal right to dignity is the only law that will endure. We must demand an Eswatini, and by extension, an Africa that seeks to improve the lives of its people, and where the “lion” protects all his people, rather than hunting those he deems “unworthy” of the shade.

Melusi Simelane is the founder and board chair of Eswatini Sexual and Gender Minorities. He is also the Civic Rights Program Manager for the Southern Africa Litigation Center.

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