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High price for Hep C drug sparks controversy

Treatment can cure disease common in people with HIV

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Carl Schmid, Hep C, drug, Gilead, the AIDS Institute, gay news, Washington Blade

Carl Schmid, deputy director of the AIDS Institute, said Sovaldi is expensive, ‘but this is remarkable progress and the cure rate is extremely high.’ (Photo courtesy of Schmid)

The pharmaceutical company Gilead Sciences received praise earlier this month for bringing to market a newly approved drug capable of curing the potentially fatal liver disease Hepatitis C without the serious and debilitating side effects caused by the existing drug used to treat the disease.

Experts say 20 percent of people with HIV are co-infected with Hepatitis C, which over a period of years can lead to death through liver cancer and liver failure. Physicians treating people with HIV, including Whitman-Walker Health’s medical director, Dr. Richard Elion, have called Gilead’s new drug a major breakthrough.

But at least two organizations that advocate for people with HIV and Hepatitis C have denounced Gilead for setting the wholesale price for its new drug Sovaldi at a level they consider exorbitant and which they say could lead to further escalating prices for AIDS drugs.

The AIDS Healthcare Foundation, the nation’s largest private organization providing medical services for people with HIV/AIDS, and the Fair Pricing Coalition, which advocates for affordable prices for prescription drugs for people with serious illnesses, called Gilead’s decision to set a wholesale acquisition cost of $84,000 for a 12-week treatment regimen of Sovaldi unprecedented.

“There can be no better example of the unbridled greed of the pharmaceutical industry than Gilead’s latest move: pricing its new hepatitis drug at $84,000 per 28-tablet bottle or $1,000 per pill,” said Michael Weinstein, president of AHF.

Lynda Dee, co-chair of Fair Pricing Coalition, called Sovaldi a “very safe and highly effective drug” but noted that it must be used in combination with other drugs to treat different Genotypes, or strains, of Hepatitis C.

She said that although the other drugs – pegylated interferon and ribavirin – are not as expensive as Sovaldi, the price tag for combination therapy with Sovaldi comes to $93,000 and $168,000 for various treatment regimens for a single person living with Hepatitis C.

“Gilead has set the bar dangerously high as other companies determine prices for similar Hepatitis C drugs as they enter the market,” Dee said.

In a statement released at the time the U.S. Food and Drug Administration approved Sovaldi for patient use on Dec. 6, Gilead said it had put in place a patient assistance program to ensure that people with Hepatitis C have access to Sovaldi regardless of their ability to pay for it.

The statement said the program provides assistance to “patients who are uninsured, underinsured or who need financial assistance to pay for the medicine.” The program, called Support Path, will provide Sovaldi “at no charge for eligible patients with no other insurance options,” according to the statement.

While praising Gilead for offering such a program, which is common within the pharmaceutical industry, critics say the high price for Sovaldi would likely prompt other companies to put in place similarly high pricing policies for other promising drugs about to be released for the treatment of both Hepatitis C and HIV/AIDS.

Some Wall Street analysts suggested Gilead’s price for Sovaldi may be justified when taking into consideration the amount it spent to bring such a beneficial drug to market. Bloomberg business news service reported that Gilead, which didn’t invent Sovaldi, paid $11 billion in 2011 to buy Pharmasset, Inc., the company that developed Sovaldi and other Hepatitis C drugs expected to be approved soon.

Bloomberg cited pharmaceutical industry observers who said the Hepatitis C drugs Gilead obtained through this purchase could pull in as much as $20 billion by 2020.

Clinical trials with patients monitored by the Food and Drug Administration demonstrated that Sovaldi had a cure rate of more than 90 percent for patients with the Genotype 2 strain of Hepatitis C following a 12-week regimen with the drug ribavirin. Patients with Genotype 3, another strain of Hepatitis C, had a similarly successful cure rate following a 24-week regimen of Sovaldi and Ribavirin, the trials showed.

For patients with Genotype 1 or 4 of the Hepatitis C infection, the Sovaldi treatment needed to be combined with pegylated alfa interferon, the drug of choice for Hepatitis C before the development of Sovaldi and other new drugs nearing completion of clinical trials, statements by Gilead and the FDA said. Interferon causes serious and debilitating side effects for most patients, forcing some to stop using it before the Hepatitis C virus can be eliminated, according to medical experts.

The good news, according to those monitoring Hepatitis C treatment developments, is that Gilead and other pharmaceutical companies are close to releasing other new drugs capable of effectively curing patients with the Genotype 1 and Genotype 4 strains without the need for Interferon.

“I believe that Sovaldi will have a major impact on public health by significantly increasing the number of Americans who are cured of Hepatitis C,” said Dr. Ira Jacobson, chief of the Division of Gastroenterology at Weill Cornell Medical College in New York City, who served as a principal investigator in the clinical trials of Sovaldi.

Carl Schmid, deputy director of the AIDS Institute, which advocates for people with HIV, said the ability of Sovaldi to actually cure patients with Hepatitis C makes it different from HIV drugs on the market, which keep most patients healthy but cannot cure HIV/AIDS.

“Yes, it’s expensive,” he said of Sovaldi. “But this is remarkable progress and the cure rate is extremely high.”

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U.S. Federal Courts

Judge temporarily blocks executive orders targeting LGBTQ, HIV groups

Lambda Legal filed the lawsuit in federal court

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President Donald Trump (Washington Blade photo by Michael Key)

A federal judge on Monday blocked the enforcement of three of President Donald Trump’s executive orders that would have threatened to defund nonprofit organizations providing health care and services for LGBTQ people and those living with HIV.

The preliminary injunction was awarded by Judge Jon Tigar of the U.S. District Court for the Northern District of California in a case, San Francisco AIDS Foundation v. Trump, filed by Lambda Legal and eight other organizations.

Implementation of the executive orders — two aimed at diversity, equity, and inclusion along with one targeting the transgender community — will be halted pending the outcome of the litigation challenging them.

“This is a critical win — not only for the nine organizations we represent, but for LGBTQ communities and people living with HIV across the country,” said Jose Abrigo, Lambda Legal’s HIV Project director and senior counsel on the case. 

“The court blocked anti-equity and anti-LGBTQ executive orders that seek to erase transgender people from public life, dismantle DEI efforts, and silence nonprofits delivering life-saving services,” Abrigo said. “Today’s ruling acknowledges the immense harm these policies inflict on these organizations and the people they serve and stops Trump’s orders in their tracks.”

Tigar wrote, in his 52-page decision, “While the Executive requires some degree of freedom to implement its political agenda, it is still bound by the constitution.”

“And even in the context of federal subsidies, it cannot weaponize Congressionally appropriated funds to single out protected communities for disfavored treatment or suppress ideas that it does not like or has deemed dangerous,” he said.

Without the preliminary injunction, the judge wrote, “Plaintiffs face the imminent loss of federal funding critical to their ability to provide lifesaving healthcare and support services to marginalized LGBTQ populations,” a loss that “not only threatens the survival of critical programs but also forces plaintiffs to choose between their constitutional rights and their continued existence.”

The organizations in the lawsuit are located in California (San Francisco AIDS Foundation, Los Angeles LGBT Center, GLBT Historical Society, and San Francisco Community Health Center), Arizona (Prisma Community Care), New York (The NYC LGBT Community Center), Pennsylvania (Bradbury-Sullivan Community Center), Maryland (Baltimore Safe Haven), and Wisconsin (FORGE).

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Activists rally for Andry Hernández Romero in front of Supreme Court

Gay asylum seeker ‘forcibly deported’ to El Salvador, described as political prisoner

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Immigrant Defenders Law Center President Lindsay Toczylowski, on right, speaks in support of her client, Andry Hernández Romero, in front of the U.S. Supreme Court on June 6, 2025. (Washington Blade photo by Michael K. Lavers)

More than 200 people gathered in front of the U.S. Supreme Court on Friday and demanded the Trump-Vance administration return to the U.S. a gay Venezuelan asylum seeker who it “forcibly disappeared” to El Salvador.

Lindsay Toczylowski, president of the Immigrant Defenders Law Center, a Los Angeles-based organization that represents Andry Hernández Romero, is among those who spoke alongside U.S. Rep. Mark Takano (D-Calif.) and Human Rights Campaign Campaigns and Communications Vice President Jonathan Lovitz. Sarah Longwell of the Bulwark, Pod Save America’s Jon Lovett, and Tim Miller are among those who also participated in the rally.

“Andry is a son, a brother. He’s an actor, a makeup artist,” said Toczylowski. “He is a gay man who fled Venezuela because it was not safe for him to live there as his authentic self.”

(Video by Michael K. Lavers)

The White House on Feb. 20 designated Tren de Aragua, a Venezuelan gang, as an “international terrorist organization.”

President Donald Trump on March 15 invoked the Alien Enemies Act of 1798, which the Associated Press notes allows the U.S. to deport “noncitizens without any legal recourse.” The Trump-Vance administration subsequently “forcibly removed” Hernández and hundreds of other Venezuelans to El Salvador.

Toczylowski said she believes Hernández remains at El Salvador’s Terrorism Confinement Center, a maximum-security prison known by the Spanish acronym CECOT. Toczylowski also disputed claims that Hernández is a Tren de Aragua member.

“Andry fled persecution in Venezuela and came to the U.S. to seek protection. He has no criminal history. He is not a member of the Tren de Aragua gang. Yet because of his crown tattoos, we believe at this moment that he sits in a torture prison, a gulag, in El Salvador,” said Toczylowski. “I say we believe because we have not had any proof of life for him since the day he was put on a U.S. government-funded plane and forcibly disappeared to El Salvador.”

“Andry is not alone,” she added.

Takano noted the federal government sent his parents, grandparents, and other Japanese Americans to internment camps during World War II under the Alien Enemies Act. The gay California Democrat also described Hernández as “a political prisoner, denied basic rights under a law that should have stayed in the past.”

“He is not a case number,” said Takano. “He is a person.”

Hernández had been pursuing his asylum case while at the Otay Mesa Detention Center in San Diego.

A hearing had been scheduled to take place on May 30, but an immigration judge the day before dismissed his case. Immigrant Defenders Law Center has said it will appeal the decision to the Board of Immigration Appeals, which the Justice Department oversees.

“We will not stop fighting for Andry, and I know neither will you,” said Toczylowski.

Friday’s rally took place hours after Attorney General Pam Bondi said Kilmar Abrego Garcia, a Maryland man who the Trump-Vance administration wrongfully deported to El Salvador, had returned to the U.S. Abrego will face federal human trafficking charges in Tennessee.

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A husband’s story: Michael Carroll reflects on life with Edmund White

Iconic author died this week; ‘no sunnier human in the world’

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Michael Carroll spoke to the Blade after the death his husband Edmund White this week. (Photo by Michael Carroll)

Unlike most gay men of my generation, I’ve only been to Fire Island twice. Even so, the memory of my first visit has never left me. The scenery was lovely, and the boys were sublime — but what stood out wasn’t the beach or the parties. It was a quiet afternoon spent sipping gin and tonics in a mid-century modern cottage tucked away from the sand and sun.

Despite Fire Island’s reputation for hedonism, our meeting was more accident than escapade. Michael Carroll — a Facebook friend I’d chatted with but never met — mentioned that he and his husband, Ed, would be there that weekend, too. We agreed to meet for a drink. On a whim, I checked his profile and froze. Ed was author Edmund White.

I packed a signed copy of Carroll’s “Little Reef” and a dog-eared hardback of “A Boy’s Own Story,” its spine nearly broken from rereads. I was excited to meet both men and talk about writing, even briefly.

Yesterday, I woke to the news that Ed had passed away. Ironically, my first thought was of Michael.

This week, tributes to Edmund White are everywhere — rightly celebrating his towering legacy as a novelist, essayist, and cultural icon. I’ve read all of his books, and I could never do justice to the scope of a career that defined and chronicled queer life for more than half a century. I’ll leave that to better-prepared journalists.

But in those many memorials, I’ve noticed something missing. When Michael Carroll is mentioned, it’s usually just a passing reference: “White’s partner of thirty years, twenty-five years his junior.” And yet, in the brief time I spent with this couple on Fire Island, it was clear to me that Michael was more than a footnote — he was Ed’s anchor, editor, companion, and champion. He was the one who knew his husband best.

They met in 1995 after Michael wrote Ed a fan letter to tell him he was coming to Paris. “He’d lost the great love of his life a year before,” Michael told me. “In one way, I filled a space. Understand, I worshiped this man and still do.”

When I asked whether there was a version of Ed only he knew, Michael answered without hesitation: “No sunnier human in the world, obvious to us and to people who’ve only just or never met him. No dark side. Psychology had helped erase that, I think, or buffed it smooth.”

Despite the age difference and divergent career arcs, their relationship was intellectually and emotionally symbiotic. “He made me want to be elegant and brainy; I didn’t quite reach that, so it led me to a slightly pastel minimalism,” Michael said. “He made me question my received ideas. He set me free to have sex with whoever I wanted. He vouchsafed my moods when they didn’t wobble off axis. Ultimately, I encouraged him to write more minimalistically, keep up the emotional complexity, and sleep with anyone he wanted to — partly because I wanted to do that too.”

Fully open, it was a committed relationship that defied conventional categories. Ed once described it as “probably like an 18th-century marriage in France.” Michael elaborated: “It means marriage with strong emotion — or at least a tolerance for one another — but no sex; sex with others. I think.”

That freedom, though, was always anchored in deep devotion and care — and a mutual understanding that went far beyond art, philosophy, or sex. “He believed in freedom and desire,” Michael said, “and the two’s relationship.”

When I asked what all the essays and articles hadn’t yet captured, Michael paused. “Maybe that his writing was tightly knotted, but that his true personality was vulnerable, and that he had the defense mechanisms of cheer and optimism to conceal that vulnerability. But it was in his eyes.”

The moment that captured who Ed was to him came at the end. “When he was dying, his second-to-last sentence (garbled then repeated) was, ‘Don’t forget to pay Merci,’ the cleaning lady coming the next day. We had had a rough day, and I was popping off like a coach or dad about getting angry at his weakness and pushing through it. He took it almost like a pack mule.” 

Edmund White’s work shaped generations — it gave us language for desire, shame, wit, and liberation. But what lingers just as powerfully is the extraordinary life Ed lived with a man who saw him not only as a literary giant but as a real person: sunny, complex, vulnerable, generous.

In the end, Ed’s final words to his husband weren’t about his books or his legacy. They were about care, decency, and love. “You’re good,” he told Michael—a benediction, a farewell, maybe even a thank-you.

And now, as the world celebrates the prolific writer and cultural icon Edmund White, it feels just as important to remember the man and the person who knew him best. Not just the story but the characters who stayed to see it through to the end.

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