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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

RFK Jr.’s HHS report pushes therapy, not medical interventions, for trans youth

‘Discredited junk science’ — GLAAD

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HHS Secretary Robert F. Kennedy Jr. (Washington Blade photo by Michael Key)

A 409-page report released Thursday by the U.S. Department of Health and Human Services challenges the ethics of medical interventions for youth experiencing gender dysphoria, the treatments that are often collectively called gender-affirming care, instead advocating for psychotherapy alone.

The document comes in response to President Donald Trump’s executive order barring the federal government from supporting gender transitions for anyone younger than 19.

“Our duty is to protect our nation’s children — not expose them to unproven and irreversible medical interventions,” National Institutes of Health Director Dr. Jay Bhattacharya said in a statement. “We must follow the gold standard of science, not activist agendas.”

While the report does not constitute clinical guidance, its findings nevertheless conflict with not just the recommendations of LGBTQ advocacy groups but also those issued by organizations with relevant expertise in science and medicine.

The American Medical Association, for instance, notes that “empirical evidence has demonstrated that trans and non-binary gender identities are normal variations of human identity and expression.”

Gender-affirming care for transgender youth under standards widely used in the U.S. includes supportive talk therapy along with — in some but not all cases — puberty blockers or hormone treatment.

“The suggestion that someone’s authentic self and who they are can be ‘changed’ is discredited junk science,” GLAAD President and CEO Sarah Kate Ellis said in a statement. “This so-called guidance is grossly misleading and in direct contrast to the recommendation of every leading health authority in the world. This report amounts to nothing more than forcing the same discredited idea of conversion therapy that ripped families apart and harmed gay, lesbian, and bisexual young people for decades.”

GLAAD further notes that the “government has not released the names of those involved in consulting or authoring this report.”

Janelle Perez, executive director of LPAC, said, “For decades, every major medical association–including the American Medical Association and the American Academy of Pediatrics–have affirmed that medical care is the only safe and effective treatment for transgender youth experiencing gender dysphoria.

“This report is simply promoting conversion therapy by a different name – and the American people know better. We know that conversion therapy isn’t actually therapy – it isolates and harms kids, scapegoats parents, and divides families through blame and rejection. These tactics have been used against gay kids for decades, and now the same people want to use them against transgender youth and their families.

“The end result here will be a devastating denial of essential health care for transgender youth, replaced by a dangerous practice that every major U.S. medical and mental health association agree promotes anxiety, depression, and increased risk of suicidal thoughts and attempts.

“Like being gay or lesbian, being transgender is not a choice, and no amount of pressure can force someone to change who they are. We also know that 98% of people who receive transition-related health care continue to receive that health care throughout their lifetime. Trans health care is health care.”

“Today’s report seeks to erase decades of research and learning, replacing it with propaganda. The claims in today’s report would rip health care away from kids and take decision-making out of the hands of parents,” said Shannon Minter, legal director of NCLR. “It promotes the same kind of conversion therapy long used to shame LGBTQ+ people into hating themselves for being unable to change something they can’t change.”

“Like being gay or lesbian, being transgender is not a choice—it’s rooted in biology and genetics,” Minter said. “No amount or talk or pressure will change that.” 

Human Rights Campaign Chief of Staff Jay Brown released a statement: “Trans people are who we are. We’re born this way. And we deserve to live our best lives and have a fair shot and equal opportunity at living a good life.

“This report misrepresents the science that has led all mainstream American medical and mental health professionals to declare healthcare for transgender youth to be best practice and instead follows a script predetermined not by experts but by Sec. Kennedy and anti-equality politicians.”




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The White House

Trump nominates Mike Waltz to become next UN ambassador

Former Fla. congressman had been national security advisor

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U.N. headquarters in New York (Washington Blade photo by Michael K. Lavers)

President Donald Trump on Thursday announced he will nominate Mike Waltz to become the next U.S. ambassador to the U.N.

Waltz, a former Florida congressman, had been the national security advisor.

Trump announced the nomination amid reports that Waltz and his deputy, Alex Wong, were going to leave the administration after Waltz in March added a journalist to a Signal chat in which he, Defense Secretary Pete Hegseth, and other officials discussed plans to attack Houthi rebels in Yemen.

“I am pleased to announce that I will be nominating Mike Waltz to be the next United States ambassador to the United Nations,” said Trump in a Truth Social post that announced Waltz’s nomination. “From his time in uniform on the battlefield, in Congress and, as my National Security Advisor, Mike Waltz has worked hard to put our nation’s Interests first. I know he will do the same in his new role.”

Trump said Secretary of State Marco Rubio will serve as interim national security advisor, “while continuing his strong leadership at the State Department.”

“Together, we will continue to fight tirelessly to make America, and the world, safe again,” said Trump.

Trump shortly after his election nominated U.S. Rep. Elise Stefanik (R-N.Y.) to become the next U.S. ambassador to the U.N. Trump in March withdrew her nomination in order to ensure Republicans maintained their narrow majority in the U.S. House of Representatives.

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U.S. Federal Courts

Second federal lawsuit filed against White House passport policy

Two of seven plaintiffs live in Md.

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Lambda Legal on April 25 filed a federal lawsuit on behalf of seven transgender and nonbinary people who are challenging the Trump-Vance administration’s passport policy.

The lawsuit, which Lambda Legal filed in U.S. District Court for the District of Maryland in Baltimore, alleges the policy that bans the State Department from issuing passports with “X” gender markers “has caused and is causing grave and immediate harm to transgender people like plaintiffs, in violation of their constitutional rights to equal protection.”

Two of the seven plaintiffs — Jill Tran and Peter Poe — live in Maryland. The State Department, Secretary of State Marco Rubio, and the federal government are defendants.

“The discriminatory passport policy exposes transgender U.S. citizens to harassment, abuse, and discrimination, in some cases endangering them abroad or preventing them from traveling, by forcing them to use identification documents that share private information against their wishes,” said Lambda Legal in a press release.

Zander Schlacter, a New York-based textile artist and designer, is the lead plaintiff.

The lawsuit notes he legally changed his name and gender in New York.

Schlacter less than a week before President Donald Trump’s inauguration “sent an expedited application to update his legal name on his passport, using form DS-5504.”

Trump once he took office signed an executive order that banned the State Department from issuing passports with “X” gender markers. The lawsuit notes Schlacter received his new passport in February.

“The passport has his correct legal name, but now has an incorrect sex marker of ‘F’ or ‘female,'” notes the lawsuit. “Mr. Schlacter also received a letter from the State Department notifying him that ‘the date of birth, place of birth, name, or sex was corrected on your passport application,’ with ‘sex’ circled in red. The stated reason was ‘to correct your information to show your biological sex at birth.'”

“I, like many transgender people, experience fear of harassment or violence when moving through public spaces, especially where a photo ID is required,” said Schlacter in the press release that announced the lawsuit. “My safety is further at risk because of my inaccurate passport. I am unwilling to subject myself and my family to the threat of harassment and discrimination at the hands of border officials or anyone who views my passport.”

Former Secretary of State Antony Blinken in June 2021 announced the State Department would begin to issue gender-neutral passports and documents for American citizens who were born overseas.

Dana Zzyym, an intersex U.S. Navy veteran who identifies as nonbinary, in 2015 filed a federal lawsuit against the State Department after it denied their application for a passport with an “X” gender marker. Zzyym in October 2021 received the first gender-neutral American passport.

Lambda Legal represented Zzyym.

The State Department policy took effect on April 11, 2022.

Trump signed his executive order shortly after he took office in January. Germany, Denmark, Finland, and the Netherlands are among the countries that have issued travel advisories for trans and nonbinary people who plan to visit the U.S.

A federal judge in Boston earlier this month issued a preliminary injunction against the executive order.  The American Civil Liberties Union filed the lawsuit on behalf of seven trans and nonbinary people.

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