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Higher AIDS drug costs under Obamacare?

Sebelius urged to allow drug company subsidies in exchanges

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Kathleen Sebelius, AIDS, HHS, gay news, Washington Blade

AIDS groups sent a letter to HHS Secretary Kathleen Sebelius urging her to allow drug company discount programs to operate under Obamacare. (Washington Blade file photo by Michael Key).

AIDS advocacy organizations say people with HIV could be forced to pay hundreds of dollars more each month for life-saving prescription drugs through health insurance plans required under the soon-to-be implemented Affordable Care Act known as Obamacare.

Leaders of more than 160 national and local organizations advocating for people with AIDS and other diseases sent a joint letter on Monday to Kathleen Sebelius, the U.S. Secretary of Health and Human Services, urging her to allow drug company discount programs to operate under Obamacare.

“We, the undersigned organizations and individuals, are writing to urge that the HHS issue clear guidance on the allowance of drug industry-provided co-payments, co-insurance, or other out-of-pocket discount cards and coupons in the Affordable Care Act’s Health Insurance Marketplaces,” the letter to Sebelius says.

“As people living with, and organizations serving people with HIV, HCV [Hepatitis C Virus], and other life-threatening and chronic health conditions, we are alarmed by the possibility of the prohibition of these critical financial lifelines,” the letter says.

The signers of the letter were referring to a controversy that erupted last month when Sebelius released a letter she sent to U.S. Rep. Jim McDermott (D-Wash.) saying HHS determined that the Obamacare health insurance exchanges were not “federal health care programs” as defined by a separate federal law aimed at curtailing health care fraud.

By declaring that the exchanges are not federal health care programs HHS, among other things, made the exchanges and the insurance plans sold under them exempt from a provision of the Social Security Act that bans pharmaceutical companies from providing insurance co-payment discounts or subsidies to patients for the purchase of prescription drugs.

Although this initial action by HHS drew strong support from AIDS organizations it surprised and angered many private health insurance companies and federal and state consumer protection regulators, who argued that the exemption would take away an important tool for preventing and prosecuting health care fraud.

Critics, including U.S. Charles Grassley (R-Iowa), noted that the Social Security Act prohibits pharmaceutical companies from providing co-payment assistance to patients under Medicare and Medicaid and that the Affordable Care Act should be considered as a similar federal health program.

Possibly due to the criticism of Sebelius’s initial determination on the issue, a short time later the HHS Center for Consumer Information and Insurance Oversight, which oversees insurance-related matters, issued a memo that appeared to contradict Sebelius’s interpretation of the Social Security Act.

The latter development prompted the AIDS organizations and allied groups to send their Dec. 2 letter to Sebelius urging her to hold firm on her initial determination that the insurance exchanges are exempt from the Social Security Act’s ban on drug company subsidies for prescription drug coverage.

The D.C.-based national group Health HIV participated in efforts to recruit groups to sign the letter.

According to the Wall Street Journal, drug companies spent about $4 billion on co-payment assistance programs for patients with HIV and other illnesses in 2011. The paper cited experts in the pharmaceutical industry that said the assistance programs often lowered a patient’s co-payment from $250 or more per month to just $5 per month for a prescription drug.

Critics of the program say the subsidies often are given for brand-name drugs and encourage patients not to request cheaper generic drugs. This forces insurance companies to pay more for the name-brand drugs, resulting in higher premiums for everyone in the long run, critics have said.

But in their letter to Sebelius, the AIDS organization officials said most AIDS-related drugs needed by people with HIV are not available in generic forms.

“[W]e urge you to consider the unintended consequences of suddenly removing industry-provided out-of-pocket assistance for brand-name drugs without generic equivalents from the patchwork of programs that so many people with serious and chronic conditions rely on,” the joint letter says.

“It could potentially threaten access to lifesaving medications for thousands of people living with HIV; bar millions of people with hepatitis C from benefiting from the new short-course curative treatment combinations; and keep countless people with cancer and other debilitating and life-threatening illnesses from the treatment they need to stay alive,” the letter says.

“We fear this will be a major setback to the goals of the Affordable Care Act,” it says.

HHS spokesperson Mike Robinson said he would make inquiries in response to a request by the Blade for Sebelius’s response to the joint letter by the AIDS organizations, but he did not immediately respond.

“We’re still waiting for a clear determination from HHS,” said Carl Schmid, deputy director of the AIDS Institute, one of the groups that signed on to the letter to Sebelius. “There have been some mixed signals from the department.”

Schmid said the drug company assistance programs seek to help people with HIV who are not eligible for the federal-state AIDS Drug Assistance Program known as ADAP, which provides AIDS drugs to low-income people who don’t have insurance.

Although people being helped by the pharmaceutical company assistance programs often are employed and have moderate incomes, the high cost of prescription drug co-payments could be devastating to them, Schmid and others familiar with the programs said. Some people with HIV need more than one drug for their treatment regimen, and co-payments under their insurance plans often result in co-payments of more than $200 per drug per month.

Dan Mendelson, president of the heath care consulting firm Avalere Health LLC told the Wall Street Journal that the average “silver” health insurance plan under the Obamacare exchanges has a required annual deductible of $2,500. He told the WSJ that the average deductible for the “bronze” plans under the exchanges, which are said to be the cheapest plans, is $5,000.

Schmid said these costs are often prohibitive for patients with modest incomes. The elimination of the drug company assistance programs under the Affordable Care Act’s exchanges would create a serious burden on HIV patients and others who now rely on the assistance programs.

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Federal Government

Gay Venezuelan man ‘forcibly disappeared’ to El Salvador files claim against White House

Andry Hernández Romero had asked for asylum in US

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Andry Hernández Romero (Photo courtesy of the Immigrant Defenders Law Center)

A gay Venezuelan asylum seeker who the U.S. “forcibly disappeared” to El Salvador has filed a claim against the federal government.

Immigrant Defenders Law Center, who represents Andry Hernández Romero, on Friday announced their client and five other Venezuelans who the Trump-Vance administration “forcibly removed” to El Salvador under the Alien Enemies Act of 1798, filed “administrative claims” under the Federal Tort Claims Act.

The White House on Feb. 20, 2025, designated Tren de Aragua, a Venezuelan gang, as an “international terrorist organization.”

President Donald Trump less than a month later invoked the Alien Enemies Act of 1798, which the Associated Press notes allows the U.S. to deport “noncitizens without any legal recourse.” The White House then “forcibly removed” Hernández, who had been pursuing his asylum case in the U.S., and more than 250 other Venezuelans to El Salvador.

Immigrant Defenders Law Center disputed claims that Hernández is a Tren de Aragua member.

Hernández was held at El Salvador’s Terrorism Confinement Center, a maximum-security prison known by the Spanish acronym CECOT, until his release on July 18, 2025. Hernández, who is back in Venezuela, claims he suffered physical and sexual abuse while at CECOT.

“As a Venezuelan citizen with no criminal record anywhere in the world, I would like to tell not only the government of the United States but governments everywhere that no human being is illegal,” said Hernández in the Immigrant Defenders Law Center press release. “The practice of judging whole communities for the wrongdoing of a single individual must end. Governments should use their power to help every person in the nation become more aware and informed, to strengthen our cultures and build a stronger generation with principles and values — one that multiplies the positive instead of destroying unfulfilled dreams and opportunities.” 

Immigrant Defenders Law Center filed claims on behalf of Hernández and the five other Venezuelans less than three months after American forces seized then-Venezuelan President Nicolás Maduro and his wife, Cilia Flores, at their home in Caracas, the Venezuelan capital.

Maduro and Flores have pleaded not guilty to federal drug charges. Delcy Rodríguez, who was Maduro’s vice president, is Venezuela’s acting president.

‘Due process and accountability cannot be optional’

Immigrant Defenders Law Center on Friday also made the following demands: 

  • The Trump administration must officially release the names of all people the United States sent to CECOT to ensure that everyone has been or will be released. 
  • The federal government must clear the names of the 252 men wrongfully labeled as criminal gang members of Tren de Aragua.  
  • DHS (Department of Homeland Security) must end the practice of outsourcing torture through third‑country removals, restore humanitarian parole, and rebuild a functioning, humane asylum system.  
  • DHS must reinstate Temporary Protected Status for all individuals who cannot safely return to their home countries, halt mass deportations and unlawful raids and arrests, and guarantee due process for everyone navigating the immigration system.  
  • Congress must pass the Neighbors Not Enemies Act, which would repeal the Alien Enemies Act.   

“In all my years as an immigration attorney, I have never seen a client simply vanish in the middle of their case with no explanation,” said Immigration Defenders Legal Fund Legal Services Director Melissa Shepard. “In court, the government couldn’t even explain where he was — he had been disappeared.” 

“When the government detains and transfers people in secrecy, without transparency or access to the courts, it tears at the basic protections a democracy is supposed to guarantee,” added Shepard. “What this experience makes painfully clear is that due process and accountability cannot be optional. They are the only safeguards standing between people and the kind of lawlessness our clients suffered. We must end third country transfers, restore the asylum system, and humanitarian parole, and reinstate temporary protective status so this nightmare never happens again.” 

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The White House

Trump proclamation targets trans rights as State Dept. shifts visa policy

Recent policy actions from the White House limit transgender rights in sports, immigration visas, and overarching federal policy.

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President Donald Trump stands in the Roosevelt Room in December 2025. (Washington Blade Photo by Joe Reberkenny)

In a proclamation issued by the Trump White House Thursday night, the president said he would, among other things, “restore public safety” and continue “upholding the rule of law,” while promoting policies that restrict the rights of transgender people.

“We are keeping men out of women’s sports, enforcing Title IX as it was originally written, and ensuring colleges preserve — and, where possible, expand — scholarships and roster opportunities for female athletes,” the proclamation reads. “At the same time, we are restoring public safety and upholding the rule of law in every city so women, children, and families can feel safe and secure.”

The statement comes amid a broader series of actions by the Trump administration targeting transgender people across multiple federal policy areas, including education, health care, and immigration. A nearly complete list of policies the current administration has put forward can be found on KFF.org.

One day before the proclamation was issued, the U.S. State Department announced changes to visa regulations that could impact transgender and gender-nonconforming people seeking entry into the United States.

The policy, published March 11 and scheduled to take effect April 10, introduces changes to the Diversity Immigrant Visa Program, commonly known as the “DV Program.” The rule is framed by the department as an effort to strengthen oversight and prevent fraud within the visa lottery system, which allocates a limited number of immigrant visas annually to applicants from countries with historically low rates of immigration to the United States.

However, the updated language also standardizes the use of the term “sex” in federal regulations in place of “gender,” a change that LGBTQ advocates say could create additional barriers for transgender and gender-diverse applicants.

The policy states: “The Department of State (‘Department’) is amending regulations governing the Diversity Immigrant Visa Program (‘DV Program’) to improve the integrity of, and combat fraud in, the program. These amendments require a petitioner to the DV Program to provide valid, unexpired passport information and to upload a scan of the biographic and signature page in the electronic entry form or otherwise indicate that he or she is exempt from this requirement. Additionally, the Department is standardizing and amending its regulations to add the word ‘shall’ to simplify guidance for consular officers; ensure the use of the term ‘sex’ in lieu of ‘gender’; and replace the term ‘age’ in the DV Program regulations with the phrase ‘date of birth’ to accurately reflect the information collected and maintained by the Department during the immigrant visa process.”

Advocates say the shift toward using “sex” rather than “gender” in federal immigration rules reflects a broader push by the administration to roll back recognition of transgender identities in federal policy.

According to the National Center for Transgender Equality, an estimated 15,000 to 50,000 undocumented transgender immigrants currently live in the United States, with many entering the country to seek refuge from persecution and hostile governments in their home countries.

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Florida

Fla. House passes ‘Anti-Diversity’ bill

Measure could open door to overturning local LGBTQ rights protections

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(Photo by Catella via Bigstock)

The Florida House of Representatives on March 10 voted 77-37 to approve an “Anti-Diversity in Local Government” bill that opponents have called an extreme and sweeping measure that, among other things, could overturn local LGBTQ rights protections.

The House vote came six days after the Florida Senate voted 25-11 to pass the same bill, opening the way to send it to Republican Gov. Ron DeSantis, who supports the bill and has said he would sign it into law.

Equality Florida, a statewide LGBTQ advocacy organization that opposed the legislation, issued a statement saying the bill “would ban, repeal, and defund any local government programming, policy, or activity that provides ‘preferential treatment or special benefits’ or is designed or implemented with respect to race, color, sex, ethnicity, sexual orientation, or gender identity.”

The statement added that the bill would also threaten city and county officials with removal from office “for activities vaguely labeled as DEI,” with only limited exceptions.

“Written in broad and ambiguous language, the bill is the most extreme of its kind in the country, creating confusion and fear for local governments that recognize LGBTQ residents and other communities that contribute to strength and vibrancy of Florida cities,” the group said in a separate statement released on March 10.

The Miami Herald reports that state Sen. Clay Yarborough (R-Jacksonville), the lead sponsor of the bill in the Senate, said he added language to the bill that would allow the city of Orlando to continue to support the Pulse nightclub memorial, a site honoring 49 mostly LGBTQ people killed in the 2016 mass shooting at the LGBTQ nightclub.

But the Equality Florida statement expresses concern that the bill can be used to target LGBTQ programs and protections.

“Debate over the bill made expressly clear that LGBTQ people were a central target of the legislation,” the group’s statement says. “The public record, the bill sponsors’ own statements, and hours of legislative debate revealed the animus driving the effort to pressure local governments into pulling back from recognizing or resourcing programs targeting LGBTQ residents and other historically marginalized communities,” the statement says.

But the statement also notes that following outspoken requests by local officials, sponsors of the bill agreed to several amendments “ensuring local governments can continue to permit Pride festivals, even while navigating new restrictions on supporting or promoting them.”     

The statement adds, “Florida’s LGBTQ community knows all too well how to fight back against unjust laws. Just as we did, following the passage of Florida’s notorious ‘Don’t Say Gay or Trans’ law, we will fight every step of the way to limit the impact of this legislation, including in the courts.”

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