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Higher AIDS drug costs under Obamacare?

Sebelius urged to allow drug company subsidies in exchanges



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.



Gay journalist murdered inside Philadelphia home

Josh Kruger’s death has left city ‘shocked and saddened’



Josh Kruger with his cat Mason (Photo courtesy of Josh Kruger's Facebook page)

An openly gay journalist was shot to death in his Point Breeze neighborhood home in the 2300 block of Watkins Street in South Philadelphia early Monday morning.

According to Officer Shawn Ritchie, a spokesperson for the Philadelphia Police Department, 39-year-old Josh Kruger was shot at about 1:30 a.m. and collapsed in the street after seeking help. Kruger was transported to Penn Presbyterian Hospital where he was pronounced dead at 2:13 a.m.

Police said that Kruger was shot seven times throughout the chest and abdomen and that no weapons were recovered nor have any arrests been made. Homicides investigators noted that there was no sign of forced entry and the motive remains unclear.

Philadelphia District Attorney Larry Krasner said in a statement:

“Josh Kruger lifted up the most vulnerable and stigmatized people in our communities — particularly unhoused people living with addiction. As an openly queer writer who wrote about his own journey surviving substance use disorder and homelessness, it was encouraging to see Josh join the Kenney administration as a spokesperson for the Office of Homeless Services.

Josh deserved to write the ending of his personal story. As with all homicides, we will be in close contact with the Philadelphia police as they work to identify the person or persons responsible so that they can be held to account in a court of law. I extend my deepest condolences to Josh’s loved ones and to all those mourning this loss.”

WHYY reported Kruger had written extensively with bylines in multiple publications, including the Philadelphia Inquirer, Philadelphia Magazine, the Philadelphia Citizen, WHYY, and Billy Penn.

CBS News reported that Kruger overcame homelessness and addiction to work for five years in city government, handling Mayor Jim Kenney’s social media and serving as the communications director for the city’s Office of Homeless Services.

He left city government in 2021 to return to journalism, according to his website.

“He was more than just a journalist,” Kendall Stephens, who was a friend and neighbor of Kruger’s, told CBS News. “He was more than just a community member. He was somebody that fought that great fight so many of us are not able to fight that fight because we’re too busy sheltered in our own homes wondering if someone is going to knock down our doors and kill us the same way they killed him. The same way they tried to kill me. And we’re tired of it.”   

Kenney said in a statement that he is “shocked and saddened” by Kruger’s death.

“He cared deeply about our city and its residents, which was evident in his public service and writing. Our administration was fortunate to call him a colleague, and our prayers are with everyone who knew him.”

The District Attorney’s LGBTQ+ Advisory Committee issued the following statement:

“Many of us knew Josh Kruger as a comrade who never stopped advocating for queer Philadelphians living on the margins of society. His struggles mirrored so many of ours — from community rejection, to homelessness, to addiction, to living with HIV, to poverty — and his recovery, survival, and successes showed what’s possible when politicians and elected leaders reject bigotry and work affirmatively to uplift all people. Even while Josh worked for the mayor, he never stopped speaking out against police violence, politicized attacks on trans and queer people, or the societal discarding of homeless and addicted Philadelphians.

We are devastated that Josh’s life was ended so violently. We urge anyone who has information that could lead to an arrest and prosecution for Josh’s murder to contact the Philadelphia Police or the DA’s Office directly. LGBTQ+ Philadelphians experience violence of all kinds every day; few people used their platforms to remind powerful people in government of that reality as effectively as Josh Kruger did. Josh and the communities he advocated for every day of his life deserve nothing less than justice and accountability for this outrageous crime.”

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U.S. Federal Courts

Lesbian mother from El Salvador released from ICE custody

Jessica Barahona-Martinez arrested on June 26, 2017



(Bigstock photo)

A federal judge last week ordered the release of a lesbian mother from El Salvador who had been in U.S. Immigration and Customs Enforcement custody since June 2017.

Jessica Patricia Barahona-Martinez and her three children entered the U.S. on May 31, 2016. A court filing notes she fled “persecution she faced in El Salvador as a lesbian, and because the government had falsely identified her as a gang member.”

Barahona-Martinez lived with her sister and other relatives in Woodbridge, Va., until ICE arrested and detained her on June 26, 2017. She was housed at two ICE detention centers in Virginia until her transfer to the South Louisiana ICE Processing Center, a privately-run facility the GEO Group, a Florida-based company, operates in Basile, La., in October 2020. 

An immigration judge in November 2019 granted Barahona-Martinez asylum for the second time. The government appealed the decision and the Board of Immigration Appeals, which the Justice Department oversees, ruled in their favor.

The American Civil Liberties Union and the ACLU of Louisiana last month filed a writ for habeas corpus petition in the U.S. District Court for the Western District of Louisiana’s Lafayette Division that asked for Barahona-Martinez’s release. U.S. District Judge Terry A. Doughty on Sept. 27 ruled in her favor.  

“Petitioner (Barahona-Martinez) ultimately argues that her prolonged detention violates due process; she moves that this court issues a temporary restraining order, requests release, a bond hearing, an expedited hearing and costs and attorney fees,” wrote Doughty.

“This court finds that petitioner has plausibly alleged her prolonged detention violates due process,” added Doughty.

An ACLU spokesperson on Monday told the Blade that ICE has released Barahona-Martinez and she is once again in Virginia with her children and sister. 

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State Department

State Department hosts intersex activists from around the world

Group met with policy makers, health officials, NGOs



The State Department last week hosted a group of intersex activists from around the world. (Courtesy photo)

The State Department last week hosted five intersex activists from around the world.

Kimberly Zieselman, a prominent intersex activist who advises Jessica Stern, the special U.S. envoy for the promotion of LGBTQ and intersex rights abroad, brought the activists to D.C.

• Morgan Carpenter, co-founder and executive director of Intersex Human Rights Australia

• Natasha Jiménez, an intersex activist from Costa Rica who is the general coordinator of Mulabi, the Latin American Space for Sexualities and Rights

• Julius Kaggwa, founder of the Support Initiative for People with Atypical Sex Development Uganda

• Magda Rakita, co-founder and executive director of Fujdacja Interakcja in Poland and co-founder of Interconnected UK

• Esan Regmi, co-founder and executive director of the Campaign for Change in Nepal.

Special U.S. Envoy for Global Youth Issues Abby Finkenauer and Assistant Health Secretary Rachel Levine are among the officials with whom the activists met.

Zieselman told the Washington Blade on Sept. 21 the activists offered State Department officials an “intersex 101” overview during a virtual briefing.

More than 60 Save the Children staffers from around the world participated in another virtual briefing. Zieselman noted the activists also met with Stern, U.N. and Organization of American States officials, funders and NGO representatives while in D.C.

“The people we met were genuinely interested,” Rakita told the Blade.

Stern in an exclusive statement to the Blade said “the visiting intersex activists clearly had an impact here at State, sharing their expertise and lived experience highlighting the urgency to end human rights abuses, including those involving harmful medical practices against intersex persons globally.” Andrew Gleason, senior director for gender equality and social justice at Save the Children US, in a LinkedIn post he wrote after attending his organization’s meeting with the activists echoed Stern.

“There are many learnings to recount from today’s discussion, but one thing is clear, this is unequivocally a child rights issue, and one that demands attention and action at the intersection of LGBTQI+ rights, reproductive rights and justice, disability justice and more,” wrote Gleason. “Gratitude to the panelists for sharing such poignant testimonies and providing insights into what organizations like ours can do to contribute to the broader intersex movement; and thank you to Kimberly for your leadership and bringing this group together.”

The activists’ trip to D.C. coincided with efforts to end so-called sex “normalization” surgeries on intersex children.

Greek lawmakers in July passed a law that bans such procedures on children under 15 unless they offer their consent or a court allows them to happen. Doctors who violate the statute face fines and prison.

Germany Iceland, Malta, Portugal and Spain have also enacted laws that seek to protect intersex youth. 

A law that grants equal rights and legal recognition to intersex people in Kenya took effect in July 2022. Lawmakers in the Australian Capital Territory earlier this year passed the Variation in Sex Characteristics (Restricted Medical Treatment) Bill 2023.

Intersex Human Rights Australia notes the law implements “mechanisms to regulate non-urgent medical care to encourage child participation in medical decisions, establish groundbreaking oversight mechanisms and provide transparency on medical practices and decision making.” It further points out the statute “will criminalize some deferrable procedures that permanently alter the sex characteristics of children” and provides “funding for necessary psychosocial supports for families and children.”

“It’s amazing,” Carpenter told the Blade when discussing the law and resistance to it. “It’s not perfect. There was some big gaps, but physicians are resisting every step of the way.”

The State Department in April 2022 began to issue passports with an “X” gender marker.

Dana Zzyym, an intersex U.S. Navy veteran who identifies as non-binary, 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.

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