National
Higher AIDS drug costs under Obamacare?
Sebelius urged to allow drug company subsidies in exchanges
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.
National
White House Correspondents’ Dinner rescheduled after shooting
‘We will not allow an act of violence to have the last word’
The White House Correspondents’ Association announced on Tuesday that it has rescheduled its annual dinner for July 24 after the April event was halted when gunshots rang out at the Washington Hilton.
Cole Allen, 31, is charged with the attempted assassination of President Trump, who was in the ballroom at the time of the incident. One Secret Service officer was wounded in the attack. Officers stopped Allen before he could enter the ballroom where 2,500 journalists and politicos were having dinner and waiting for Trump to speak. It was Trump’s first time attending as president.
“We will not allow an act of violence to have the last word, especially during a year when we are reflecting on the 250th anniversary of America and everything we stand for,” said WHCA President Weijia Jiang in a statement to members.
She did not announce further details, including venue and ticketing.
Washington Blade White House reporter Joe Reberkenny was in the audience when shots were fired and reported live on social media from the scene.
This post will be updated as more details are announced.
Federal Government
Advocates push back on proposed FCC warning labels
New rating system public notice seeking comments issued on April 22
The Federal Communications Commission is considering a new rating system that would require a warning label to appear before any television content that includes LGBTQ characters.
On April 22, the FCC issued a public notice asking Americans to submit comments on whether the TV Oversight Management Board should create new TV ratings to alert viewers to “transgender and gender nonbinary programming” and “the discussion or promotion of gender identity themes.”
This proposed warning would appear before content, similar to warnings that explain a program contains sexual content, drug use, or violence — categories that Congress explicitly included in the Telecommunications Act of 1996 on the grounds of obscenity and violence that some parents “believe is harmful to their children.”
The public notice says that “recently, parents have raised concerns that controversial gender identity issues are being included or promoted in children’s programs without providing any disclosure or transparency to parents.”
It goes on to say that not having a warning for trans and nonbinary people is “undermining the ability of parents to make informed choices for their families.”
LGBT Tech is an organization that works to provide LGBTQ representation in mainstream media or entertainment. The group notes 81 percent of trans respondents it surveyed said these representations had a positive impact on them discovering or learning about their identity.
“These numbers reflect a basic truth: for many people, and especially young people, seeing LGBTQ+ lives represented in ordinary media is not harmful. It is formative, affirming, and often lifesaving.”
Since the public notice’s publication, more than 40 organizations have come out against the proposed alert.
GLAAD President Sarah Kate Ellis issued a statement in May on the proposal, highlighting what she described as a concerted effort by the Trump-Vance administration to other trans and nonbinary people.
“The FCC does not set TV ratings, but under this administration the FCC has repeatedly tried to control what Americans can see on their own televisions. This government overreach is dangerous and a threat to our community and our democracy,” Ellis said.
“LGBTQ+ people and their families deserve to see their lives represented in the media they watch. And media companies must have the freedom to create programming that appeals to their viewers and subscribers without interference from a government pursuing its own anti-LGBTQ+ political agenda.”
Human Rights Campaign President Kelley Robinson pointed out that this is an act of politically motivated policy, not one based on any rhyme or reason.
“LGBTQ+ stories matter and deserve to be told, seen, and heard,” Robinson said. “The Trump administration does not get to use the FCC to try and erase us simply because they want to pretend to live in a world where we don’t exist. This is a brazen form of political interference that will hurt the ability of all people to appreciate, understand, and learn about the world and people around them.”
Brian Dittmeier, director of LGBTQI+ equality at the National Women’s Law Center Action Fund, echoed Robinson’s concerns that this is attempted censorship for the sake of political gain.
“The FCC is cloaking itself in purported concern for parents in an attempt to censor content, intimidate industry, and silence depictions of our trans siblings and neighbors,” Dittmeier wrote. “The FCC is overstepping its authority to undermine the existing ratings system, which is well understood by parents and enjoys broad public support. The FCC’s presumption that it knows better does not reflect parents’ priorities and reeks of government overreach.”
PFLAG National Vice President of Policy and Government Affairs Diego Sanchez said this is federal government overreach into censorship — something the First Amendment protects against.
“The FCC has given us yet another example of what ‘small government’ means: small enough to fit in your living room; to interrupt family movie night; small enough to make home feel unsafe,” Sanchez said. “Parents and families with transgender loved ones in particular know too well how big government actions impact their families directly, because they feel those impacts before everyone else.”
This proposed warning follows a slew of other federal actions targeting trans people in America, including Executive Order 14168, “Defending Women from Gender Ideology Extremism and Restoring Biological Truth to the Federal Government,” which mandated that only sex assigned at birth be used on federal government documents regardless of gender identity, as well as broad-based restrictions on gender-affirming care, particularly for trans minors.
National
Still marching: Rev. Troy Perry and the ongoing fight for liberation
MCC founder reflects on Pride’s beginning, ongoing power of radical representation
Long before tone-deaf Target swag and rainbow-scented hashtags lit up the very queer month of June, Rev. Troy Perry was helping the LGBTQ community create space where it did not yet exist, and he did so with little more than faith and perseverance. This Pride season, as communities around the world fight once again with rising attacks on LGBTQ rights and democratic freedoms, Perry returns to the movement he helped build for a conversation rooted not only in history but in survival. The unveiling of Steps to Liberation at Founders Metropolitan Community Church serves as an uplifting reminder that Pride is not just a parade but also serves as a commitment to continue to advocate for our community.
Joined by original rainbow flag co-creator Lynn Segerblom, Perry looks back on the legacy of the first Pride marches, the spiritual and political power of real representation, and why the rainbow flag still matters nearly fifty years after its creation. As Founders MCC transforms its front steps into a vibrant rainbow pathway, the symbolism feels especially timely — freedom is not a destination, it’s something communities continuously build together, step by step. In our interview, Perry speaks candidly on activism, faith, and his continued belief that even in difficult times, hope remains an unwavering act of resistance.
You’ve been at the forefront of LGBTQ history for decades. What does this moment, unveiling Steps to Liberation, mean for you? You’ve often spoken about visibility as an act of courage. Why is that still not only true but also essential today?
I will be 86 years old in another month. Not in the best of health and in a wheelchair, but still a LGBTQ activist at heart. I tell my husband, Phillip De Blieck, that I never thought I would live this long. He and I will be celebrating our 41st anniversary this year.
In the early days of our struggle for our liberation, I used to cut up and tell people there’s just nothing like a good demonstration to get my heart pumping. This is what I feel as we dedicate the Steps of Liberation! Another symbol of our freedom. We’re here, we’re queer, and we’re gonna fight to our last breath, to win all the rights that the colors on the steps represent.
When you think back to organizing the first Pride march in Los Angeles, what emotions or memories visit you?
Having the guts to follow through on our vow to hold a pride parade, no matter what! We did follow through and sued the city of Los Angeles for the right to hold that parade. We won! Thank God for the ACLU. The next thing I thought was, my God, look at all the people who have come out to be in the parade, and to watch it. I was also thankful that no one was hurt that day, and the pride I had of being a part of that demonstration.
How does this new installation reflect the spirit of those early days of activism?
The steps of liberation tell all who see it that we are still here and not afraid after 56 years have passed since our first Pride parade.
The theme of IDAHOBIT 2026 is “The Heart of Democracy.” In your view, how has the LGBTQ movement played its part in influencing our country’s democracy?
I think that most of us have played by the rules and use the cards dealt to us to make a difference in our democracy here in the USA. The LGBTQ community has changed so much in 56 years. Today, members of our community are serving in every political office in our country. We have gay and bisexual city council members, lesbian governors, and trans state legislators. We have a gay man who has run for president of the United States. The heart of democracy is a right given to all of us to work to change our country so that all of us are treated the same. Nothing more, nothing less!
You’ve often spoken about visibility as an act of courage. Why is that still not only true but also essential today?
I tell groups of young LGBTQ people to be yourself. Flaunt it! Coming out of the closet is the best thing you can do. Whether you come out fast or slow, just come out. If you are going to do it, now is the time. I am so proud of young people who are using the Internet, TikTok, and YouTube to make a difference for us. Your siblings are looking for you!
What do you hope someone feels the first time they walk up the Rainbow Steps?
God, does this feel good! Why didn’t I do this a long time ago?
How has faith intersected with activism in your life?
This is my testimony. Most of my relatives would tell you that I have been deeply spiritual all my life. I have had the opportunity to live a very interesting life. I started preaching when I was 13 years old. I was licensed to preach in the Southern Baptist church at age 15. I married heterosexually at age 18. I started pastoring my first church at age 19. I am the father of two children. I am a Vietnam-era veteran. I was divorced at age 26 and founded Metropolitan Community Church at age 28. I have been slapped in the face, spat on, had some people try to murder me, and cursed by some throughout my life, all because I dare call myself a clergyman as a gay man. Has it been worth it? Absolutely. I would not change my life for anything. I try to always keep my faith intact.
In moments when progress feels uncertain or under threat, what keeps your hopes up?
I have my husband, Phillip, and friends that I can talk to. I also have a favorite scripture that keeps me going: though God slay me, I will trust in God. Job 13:15
How do you see younger folks carrying forward the legacy you helped build?
Don’t give up the fight. Organize, organize, organize!
The launch of Flag50 looks ahead to the 50th anniversary of the rainbow flag. What do you think folks should be reflecting on as that milestone approaches?
I love the Pride flag! It gives us hope that there can be a tomorrow. I love the colors and what they represent. Hopefully, we will be able to teach this in our schools one day, along with the American flag and how each of those colors is meant to give us dignity, as well as hope.
How do art and public installations like this one shape cultural change in ways that perhaps policy can’t?
Laws are important because they protect us, but art touches the heart first. A public installation like the Steps of Liberation tells our story without anyone having to say a word. A young person can walk up those steps and realize they are not alone. Families can see our colors and remember that LGBTQ people are part of every community in America. Art creates visibility, and visibility changes hearts and minds. Sometimes culture changes before politics catches up. I believe symbols matter. The rainbow flag matters. These steps matter. They remind us that liberation is not just something you read about in history books. It is something we continue to live every day.
What threats facing our LGBTQ community today concern you more than others?
I worry when people try to erase us, especially our transgender brothers and sisters and LGBTQ young people. I have lived long enough to know that fear and hatred can grow when people stop seeing each other as human beings. We cannot go backward. I also worry when people become discouraged and think their voice no longer matters. That is exactly when we must organize, vote, speak out, and stand together. We have survived attacks before, and we will survive them again, but only if we refuse to be silent. Silence has never protected our community. Courage and love have.
What does it mean to you to take that next step, and how would you advise our readers to take it?
Every generation has its own next step to take. For some, it means coming out. For others, it means speaking up when someone is being mistreated. It may mean marching, voting, creating art, serving your community, or simply learning to love yourself exactly as God made you. The important thing is not to stand still. Keep moving forward. Keep believing that change is possible. I have spent my whole life taking one step after another with people who dreamed of a better world. My advice is simple: do not wait for someone else to do the work. Take the next step yourself, and bring somebody with you.
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