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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

Republicans attach five anti-LGBTQ riders to State Department funding bill

Spending package would restrict Pride flags on federal buildings, trans healthcare, LGBTQ envoys

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(Washington Blade photo by Michael Key)

As Congress finalizes its funding for fiscal year 2027, Republicans are attempting to include five anti-LGBTQ riders in the National Security and Department of State Appropriations Act.

A rider is an unrelated provision tacked onto a bill that must pass — in this instance, the bill provides funding for national security policy and for the State Department.

The riders range from restricting Pride flags in federal buildings to banning transgender healthcare, but all aim to limit the visibility and rights of LGBTQ Americans.

The five riders are:

Section 7067(a) prohibits Pride flags from being flown over federal buildings.

Section 7067(c) restricts the United States’ ability to appoint special envoys, representatives, or coordinators unless expressly authorized by Congress. These roles have historically been used to promote U.S. interests in international forums — including advancing human and LGBTQ and intersex rights and other policy priorities. The change would halt what the Congressional Equality Caucus describes as providing “critical expertise to U.S. foreign policy and leadership abroad.”

Section 7067(d) reinforces multiple anti-equality executive orders signed by President Donald Trump, effectively requiring that foreign assistance funded by the United States comply with those orders. This includes rescinding federal contractor nondiscrimination protections, including for LGBTQ people.

Section 7067(e) prohibits funding for any organization that provides or promotes medically necessary healthcare for trans people or “promotes transgenderism” — effectively banning funds for organizations that recognize trans people exist. This is despite the practice of gender-affirming care being supported by nearly every major medical association.

Section 7067(g) reinforces two global gag rules put forward by the Trump-Vance administration. One is the Trans Global Gag Rule, which prohibits foreign assistance funding for organizations that acknowledge the existence of trans people or advocate for nondiscrimination protections for them, among other activities. The second is the DEI Global Gag Rule, which prohibits foreign assistance funding for organizations that engage in efforts to address the ongoing effects of racism, sexism, and other forms of bigotry outside the United States.

The global gag rule has its roots in anti-abortion policy introduced by President Ronald Reagan in 1984, when the 40th president barred foreign organizations receiving U.S. global health assistance from providing information, referrals, or services for legal abortion, or from advocating for access to abortion services in their own countries. Planned Parenthood notes that the policy also affects programs beyond abortion, including efforts to expand access to contraception, prevent and treat HIV/AIDS, combat malaria, and improve maternal and child health.

If organizations funded by the State Department engage in these activities, they could lose funding.

This anti-LGBTQ push aligns with broader actions from the Trump-Vance administration since the start of Trump’s second term, which have focused on restricting human rights — particularly those of trans Americans.

The House Appropriations Committee is responsible for drafting the appropriations legislation. U.S. Representative Tom Cole (R-Okla.) serves as chair, with U.S. Rep. Rosa DeLauro (D-Conn.) as ranking member. The committee includes 34 Republicans and 27 Democrats.

For FY27 appropriations, Congress is supposed to pass and have the president sign the funding bills by Sept. 30, 2026.

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The university that refuses to let go

Joanna Cifredo is a trans woman participating in University of Puerto Rico strike

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Joanna Cifredo outside the University of Puerto Rico campus in Mayagüez, Puerto Rico. (Washington Blade photo by Ignacio Estrada Cepero)

Over the past days, I have been walking with a question that refuses to leave me. Not the kind of question you answer from a desk or from a distance, but one that grows out of what you witness in real time, at the gates, in the faces of those who remain there without knowing how any of this will end. What is truly happening inside the University of Puerto Rico, and why have so many students decided to risk everything at a moment when they can least afford to lose anything.

I write as someone who lives just steps away from the Río Piedras campus. These days, the silence has replaced the constant movement that once defined this space. The absence is felt in every corner where students used to pass at all hours. Since arriving in Puerto Rico three years ago, I have come to know firsthand stories that rarely make it into reports or official statements. One of the reasons I chose to stay was precisely this, to serve the university community, to help create a space where students could find something as basic as a safe meal at night and, in some way, ease burdens that are often carried in silence.

I have listened, asked questions, and tried to understand without imposing answers. What I have found is not a collective outburst or a generational whim. What exists is a fracture, a deep break between those making decisions and those living with their consequences every single day.

There has been an effort to reduce this strike to an issue of order, scheduling, or academic disruption. Conversations revolve around missed classes, delayed semesters, and students supposedly unaware of the consequences of their actions. What is rarely addressed are the conditions that lead an entire student body to pause its own future to sustain a protest that offers no guarantees.

Because that is the reality. These are students who fully understand what they are risking, and yet they remain. When someone reaches that point, the least they deserve is not judgment, but to be heard.

From the outside, there have also been attempts to discredit what is happening. Familiar narratives are repeated, legitimacy is questioned, and doubt is cast over intentions. It is easier to do that than to acknowledge that this did not begin at the gates, but long before, in decisions made without building trust.

And something must be said clearly. This is not limited to the gates of Río Piedras. What we are witnessing extends across every unit of the University of Puerto Rico system. Mayagüez, Ponce, Arecibo, Bayamón, Cayey, Humacao, Carolina, Aguadilla, Utuado, and the Medical Sciences Campus. This is not an isolated reaction. It is a movement that runs through the entire institution. Río Piedras may be more visible, but it is not alone. What is happening there reflects a broader unrest felt across the system.

Within that context, one demand has grown increasingly present, the call for the resignation of University of Puerto Rico President Zayira Jordán Conde. This is not the voice of a small group. It reflects a deeper level of mistrust that has spread across multiple campuses.

The Puerto Rican Association of University Professors has also made it clear that this is not solely a student issue. There is real concern among faculty, and a shared recognition of the conditions currently shaping the university. When students and professors arrive at the same conclusion, the problem can no longer be minimized.

Meanwhile, the administration continues to speak in the language of dialogue. But dialogue is not a word, it is a practice. And when trust has been broken, it cannot be restored through statements alone, but through decisions that prove a willingness to truly listen.

In the midst of all of this, there are voices that cannot be ignored. Voices grounded not in theory, but in lived experience. One of them is Joanna Cifredo, a student at the Mayagüez campus, a young Puerto Rican trans woman, and someone widely recognized for her advocacy.

I spoke with her in recent days. What follows is her voice, exactly as it is.

How would you describe what is happening inside the University of Puerto Rico right now, beyond what people see from the outside?

Estamos viviendo momentos muy difíciles, en el sentido de que hay mucha incertidumbre y una presión constante por parte de la administración para reabrir el recinto, pero, entre todo el caos e inestabilidad provocado por las decisiones de esta administración, también hemos vivido momentos muy poderosos. Esta lucha ha sacado lo mejor de nuestra comunidad.

Lo vimos en las asambleas y plenos, donde 1,500, 1,700, hasta 1,800 estudiantes llegaron —bajo lluvia, bajo advertencias de inundaciones— y aun así se quedaron, participaron y votaron a favor de una manifestación indefinida hasta que se atiendan nuestros reclamos.

He conocido a tantas personas en los diferentes portones, estudiantes graduados, aletas, estudiantes de intercambio, estudiantes de todo tipo de concentraciones y se unieron para apoyar el movimiento estudiantil. Estudiantes que vienen a los portones después del trabajo o antes de trabajar. Estudiantes que vienen a dejar agua y suministros entre turnos de trabajo. Viejitos que vienen a los portones con desayuno, almuerzo o cena.

Más allá de lo que se ve desde afuera, lo que estamos viviendo es una mezcla de tensión y resistencia, pero también de comunidad, solidaridad y compromiso colectivo.

Much of what is discussed remains at the level of headlines or social media. From your direct experience, what specific decisions or actions from the administration have led to this level of mobilization?

Desde el inicio, la designación de la Dra. Zayira Jordán Conde careció de respaldo dentro de la comunidad universitaria. No contaba con experiencia administrativa en la UPR ni con un conocimiento básico de nuestros procesos, cultura y reglamentos. Por eso, en asamblea, el estudiantado votó para solicitarle a la Junta de Gobierno que no considerara su candidatura, y múltiples organizaciones docentes hicieron lo mismo. Existía un consenso amplio de que no tenía la experiencia necesaria para liderar una institución como la nuestra.

A pesar de ese rechazo claro, la Junta de Gobierno decidió ignorar los reclamos de la comunidad universitaria e imponer su nombramiento.

Una vez en el cargo, su estilo de gobernanza ha sido poco transparente y poco colaborativo. Sin embargo, el detonante principal de la movilización en el Recinto Universitario de Mayagüez fue su decisión de destituir, de manera unilateral y en medio del semestre, a cinco rectores, incluyendo al nuestro, el Dr. Agustín Rullán Toro, para reemplazarlo por un rector interino, el Dr. Miguel Muñoz Muñoz.

Esta acción, tomada de forma abrupta, provocó de inmediato un clima de caos e inestabilidad dentro de la institución. Y deja una pregunta inevitable: ¿no anticipó el impacto de esa decisión, lo que evidenciaría una falta de experiencia? ¿O lo anticipó y aun así decidió proceder? No está claro cuál de las dos es más preocupante.

Además, esta decisión tuvo consecuencias concretas para el estudiantado, incluyendo el retiro de becas educativas para nuevos integrantes del RUM por parte de la Fundación Ceiba, que calificó la movida como “sorprendente” y “preocupante”. Decisiones impulsivas como la que tomó la presidenta ponen en peligro la estabilidad de nuestra institución y la acreditación de la universidad.

As a trans woman within this movement, how does your identity intersect with what is happening, and why does this also shape the future of people like you?

Soy una de varias chicas trans que formamos parte activa de este movimiento estudiantil.

For those outside the UPR who believe this does not affect them, what are the real consequences of this crisis?

La Universidad de Puerto Rico se fundó para servir al pueblo.

It is impossible to overstate the role the University of Puerto Rico and its students have played in shaping the social, cultural, and economic life of this country. Its impact extends into science, medicine, and every profession that has sustained Puerto Rico over time. No other educational institution has contributed more.

After listening to her, one thing becomes undeniable. This is not just another protest, but a generation refusing to let go of what little remains within its reach. And when a generation reaches that point, the issue is no longer the strike, the issue becomes the country itself.

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National

Advocacy groups issue US travel advisory ahead of World Cup

Renee Good’s death in Minneapolis among incidents cited

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(Photo by fifg/Bigstock)

More than 100 organizations have issued a travel advisory for the U.S. ahead of the 2026 World Cup.

The World Cup will take place in the U.S., Canada, and Mexico from June 11-July 19.

“In light of the deteriorating human rights situation in the United States and in the absence of meaningful action and concrete guarantees from FIFA, host cities, or the U.S. government, the undersigned organizations are issuing this travel advisory for fans, players, journalists, and other visitors traveling to and within the United States for the June 2026 FIFA Men’s World Cup. World Cup games will be played in 11 different cities across the United States, which, like many localities, have already been the target of the Trump administration’s violent and abusive immigration crackdown,” reads the advisory that the Council for Global Equality and other groups that include the American Civil Liberties Union issued on April 23.  “The impacts of these policies vary by locality.”

“While the Trump administration’s rising authoritarianism and increasing violence pose serious risks to all, those from immigrant communities, racial and ethnic minority groups, and LGBTQ+ individuals have been and continue to be disproportionately targeted and affected by the administration’s policies and, as such, are most vulnerable to serious harm when traveling to and/or within the United States,” it adds. “This travel advisory calls on fans, players, journalists, and other visitors to exercise caution.”

The advisory specifically mentions Renee Good.

A U.S. Immigration and Customs Enforcement agent on Jan. 7 shot and killed her in Minneapolis. Good, 37, left behind her wife and three children.

The full advisory can be read here.

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