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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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State Department

Democracy Forward files FOIA request for State Department bathroom policy records

April 20 memo outlined anti-transgender rule

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(Photo courtesy of the Library of Congress)

Democracy Forward on Tuesday filed a Freedom of Information Act request for records on the State Department’s new bathroom policy.

A memo titled “Updates Regarding Biological Sex and Intimate Spaces, Including Restrooms” that the State Department issued on April 20 notes employees can no longer use bathrooms that correspond with their gender identity.

“The administration affirms that there are two sexes — male and female — and that federal facilities should operate on this objective and longstanding basis to ensure consistency, privacy, and safety in shared spaces,” State Department spokesperson Tommy Piggot told the Daily Signal, a conservative news website that first reported on the memo. “In line with President Trump’s executive order this provides clear, uniform guidance to the department by grounding policy in biological sex as determined at birth.”

President Donald Trump shortly after he took office in January 2025 issued an executive order that directed the federal government to only recognize two genders: male and female. The sweeping directive also ordered federal government agencies to “effectuate this policy by taking appropriate action to ensure that intimate spaces designated for women, girls, or females (or for men, boys, or males) are designated by sex and not identity.”

Democracy Forward’s FOIA request that the Washington Blade exclusively obtained on Tuesday is specifically seeking a copy of the memo that details the State Department’s new bathroom policy. Democracy Forward has also requested “all” memo-specific communications between the State Department’s Bureau of Global Public Affairs and the Daily Signal from April 1-21.

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Federal Government

House Republicans push nationwide ‘Don’t Say Gay’ bill

Measures would restrict federal funding for LGBTQ-affirming schools

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(Washington Blade photo by Michael Key)

Republicans have been gaining ground in reshaping education policy to be less inclusive toward LGBTQ students at the state level, and now they are turning their focus to Capitol Hill.

Some GOP lawmakers are pushing for a nationwide “Don’t Say Gay” bill, doubling down on their commitment to being the party of “traditional family values” by excluding anyone who does not identify with their sex at birth.

The largest anti-LGBTQ education legislation to reach the House chamber is House Bill 2616 — the Parental Rights Over the Education and Care of Their Kids Act, or the PROTECT Kids Act. The PROTECT Kids Act, proposed by U.S. Rep. Tim Walberg (R-Mich.), and co-sponsored by U.S. Reps. Burgess Owens (R-Utah), Mary Miller (R-Ill.), Robert Onder (R-Mo.), and Kevin Kiley (R-Calif.), would require any public elementary and middle schools that receive federal funding to require parental consent to change a child’s gender expression in school.

The bill, which was discussed during Tuesday’s House Rules Committee hearing, would specifically require any schools that get federal money from the Elementary and Secondary Education Act of 1965 — which was created to minimize financial discrepancies in education for low-income students — to get parental approval before identifying any child’s gender identity as anything other than what was provided to the school initially. This includes getting approval before allowing children to use their preferred locker room or bathroom.

It reads that any school receiving this funding “shall obtain parental consent before changing a covered student’s (1) gender markers, pronouns, or preferred name on any school form; or (2) sex-based accommodations, including locker rooms or bathrooms.”

LGBTQ rights advocates have criticized both national and state efforts to require parental permission to use a child’s preferred gender identity, as it raises issues of at-home safety — especially if the home is not LGBTQ-affirming — and could lead to the outing of transgender or gender-curious students.

A follow-up bill, HB 2617, proposed by Owens, one of the bill’s co-sponsors, prevents the use of federal funding to “advance concepts related to gender ideology,” using the definition from President Donald Trump’s 2025 Executive Order 14168, making that an enshrined definition in law of sex rather than just by executive order. There is also a bill making its way through the senate with the same text— Senate Bill 2251.

Advocates have also criticized this follow-up legislation, as it would restrict school staff — including teachers and counselors — from acknowledging trans students’ identities or providing any support. They have said that this kind of isolation can worsen mental health outcomes for LGBTQ youth and allows for education to be politicized rather than being based in reality.

David Stacy, the Human Rights Campaign’s vice president of government affairs, called this legislation out for using LGBTQ children as political pawns in an ideology fight — one that could greatly harm the safety of these children if passed.

“Trans kids are not a political agenda — they are students who deserve safety and affirmation at school like anyone else,” Stacy said in a statement. “Despite the many pressing issues facing our nation, House Republicans continue their bizarre obsession with trans people. H.R. 2616 does not protect children. It targets them. This bill is cruel, and we’re prepared to fight it.”

This is similar to Florida House Bills 1557 and 1069, referred to as the “Don’t Say Gay” bill and “Don’t Say They” bill, respectively, restricting classroom discussions on sexual orientation and gender identity, prohibiting the use of pronouns consistent with one’s gender identity, expanding book banning procedures, and censoring health curriculum.

The American Civil Liberties Union is tracking 233 bills related to restricting student and educator rights in the U.S.

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National

BREAKING NEWS: Shots fired at the White House Correspondents’ Dinner

Shooter reportedly opened fire inside hotel

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(Washington Blade photo by Joe Reberkenny)

Four loud bangs were heard in the International Ballroom of the Washington Hilton during the annual White House Correspondents’ Dinner on Saturday.

According to the Associated Press, a shooter opened fire inside the hotel outside the ballroom.

Attendees could hear four loud bangs as people started to duck and take cover. During the chaos sounds of salad and glasses were dropped as hotel employees, and guests ducked for cover.

The head table — which included President Donald Trump, Vice President JD Vance, first lady Melania Trump, and White House Correspondents Association President Weijia Jiang — were rushed off stage.

“The U.S. Secret Service, in coordination with the Metropolitan Police Department, is investigating a shooting incident near the main magnetometer screening area at the White House Correspondents’ Dinner,” the U.S. Secret Service said in a statement. “The president and the First Lady are safe along all protects. One individual is in custody. The condition of those involved is not yet known, and law enforcement is actively assessing the situation.”

Trump held a press conference at the White House after he left the hotel.

“A man charged a security checkpoint armed with multiple weapons and he was taken down by some very brave members of Secret Service,” said Trump.

Trump said the shooter is from California. He also said an officer was shot, but said his bullet proof vest “saved” him.

D.C. Mayor Muriel Bowser, interim D.C. police chief Jeffrey Carroll, U.S. Attorney for D.C. Jeanine Pirro, and other officials held their own press conference at the hotel.

Carroll said the gunman who has been identified as Cole Tomas Allen was armed with a shotgun, handgun, and “multiple” knives when he charged a Secret Service checkpoint in a hotel lobby. Carroll also told reporters that law enforcement “exchanged gunfire with that individual.”

Both he and Bowser said the gunman appeared to act alone.

“We are so very thankful to members of law enforcement who did their jobs tonight and made sure all guests were safe,” said Bowser. “Nobody else was involved.”

The Washington Blade will update this story as details become more available.

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