National
Higher AIDS drug costs under Obamacare?
Sebelius urged to allow drug company subsidies in exchanges
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.
āWe, 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 Actās Health Insurance Marketplaces,ā the letter to Sebelius says.
āAs 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,ā 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 āfederal health care programsā 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 Sebeliusās 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 Sebeliusās 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 Actās 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 patientās 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.
ā[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,ā the joint letter says.
āIt 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,ā the letter says.
āWe fear this will be a major setback to the goals of the Affordable Care Act,ā it says.
HHS spokesperson Mike Robinson said he would make inquiries in response to a request by the Blade for Sebeliusās response to the joint letter by the AIDS organizations, but he did not immediately respond.
āWeāre still waiting for a clear determination from HHS,ā said Carl Schmid, deputy director of the AIDS Institute, one of the groups that signed on to the letter to Sebelius. āThere have been some mixed signals from the department.ā
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 donāt 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 āsilverā 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 ābronzeā 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 Actās exchanges would create a serious burden on HIV patients and others who now rely on the assistance programs.
National
LGBTQ asylum seekers, migrants brace for second Trump administration
Incoming president has promised āmass deportationsā
Advocacy groups in the wake of President-elect Donald Trumpās election fear his administrationās proposed immigration policies will place LGBTQ migrants and asylum seekers at increased risk.
āWhat we are expecting again is that the new administration will continue weaponizing the immigration system to keep igniting resentment,ā Abdiel EchevarrĆa-CabĆ”n, an immigration lawyer who is based in Texasās Rio Grande Valley, told the Washington Blade.
Trump during the campaign pledged a āmass deportationā of undocumented immigrants.
The president-elect in 2019 implemented the Migrant Protection Protocols program ā known as the āRemain in Mexicoā policy ā that forced asylum seekers to pursue their cases in Mexico.
Advocates sharply criticized MPP, in part, because it made LGBTQ asylum seekers who were forced to live in Tijuana, Ciudad JuƔrez, Matamoros, and other Mexican border cities even more vulnerable to violence and persecution based on their gender identity and sexual orientation.
The State Department currently advises American citizens not to travel to Tamaulipas state in which Matamoros is located because of ācrime and kidnapping.ā The State Department also urges American citizens to āreconsider travelā to Baja California and Chihuahua states in which Tijuana and Ciudad JuĆ”rez are located respectively because of ācrime and kidnapping.ā
The Biden-Harris administration ended MPP in 2021.
The Centers for Disease Control and Prevention in March 2020 implemented Title 42, which closed the Southern border to most asylum seekers and migrants because of the COVID-19 pandemic. The policy ended in May 2023.
Robert Contreras, president of Bienestar Human Services, a Los Angeles-based organization that works with Latino and LGBTQ communities, in a statement to the Blade noted Project 2025, which āoutlines the incoming administrationās agenda, proposes extensive rollbacks of rights and protections for LGBTQ+ individuals.ā
āThis includes dismantling anti-discrimination protections, restricting access to gender-affirming healthcare, and increasing immigration enforcement,ā said Contreras.
Trans woman in Tijuana nervously awaits response to asylum application
A Biden-Harris administration policy that took place in May 2023 says ānoncitizens who cross the Southwest land border or adjacent coastal borders without authorization after traveling through another country, and without having (1) availed themselves of an existing lawful process, (2) presented at a port of entry at a pre-scheduled time using the CBP (U.S. Customs and Border Protection) One app, or (3) been denied asylum in a third country through which they traveled, are presumed ineligible for asylum unless they meet certain limited exceptions.ā The exceptions under the regulation include:
- They were provided authorization to travel to the United States pursuant to a DHS-approved parole process;
- They used the CBP One app to schedule a time and place to present at a port of entry, or they presented at a port of entry without using the CBP One app and established that it was not possible to access or use the CBP One app due to a language barrier, illiteracy, significant technical failure, or other ongoing and serious obstacle; or
- They applied for and were denied asylum in a third country en route to the United States.
Biden in June issued an executive order that prohibits migrants from asking for asylum in the U.S. if they āunlawfullyā cross the Southern border.
The Organization for Refuge, Asylum and Migration works with LGBTQ migrants and asylum seekers in Tijuana, Mexicali and other Mexican border cities.
ORAM Executive Director Steve Roth is among those who criticized Bidenās executive order. Roth told the Blade the incoming administrationās proposed policies would āleave vulnerable transgender people, gay men, lesbians, and others fleeing life-threatening violence and persecution with little to no opportunity to seek asylum in the U.S. stripped of safe pathways.ā
āMany will find themselves stranded in dangerous regions like the Mexico-U.S. border and transit countries around the world where their safety and well-being will be further jeopardized by violence, exploitation, and a lack of support,ā he said.
Jennicet GutiĆ©rrez, co-executive director of Familia: TQLM, an organization that advocates on behalf of transgender and gender non-conforming immigrants, noted to the Blade a trans woman who has asked for asylum in the U.S. āhas been patiently waiting in Tijuanaā for more than six months āfor her CBP One application response.ā
āNow she feels uncertain if she will ever get the chance to cross to the United States,ā said GutiĆ©rrez.
She added Trumpās election āis going to be devastating for LGBTQ+ asylum seekers.ā
āTransgender migrants are concerned about the future of their cases,ā said GutiĆ©rrez. āThe upcoming administration is not going to prioritize or protect our communities. Instead, they will prioritize mass deportations and incarceration.ā
TransLatin@ Coalition President Bamby Salcedo echoed GutiƩrrez.
āTrans people who are immigrants are getting the double whammy with the new administration,ā Salcedo told the Blade. āAs it is, trans people have been political targets throughout this election. Now, with the specific target against immigrants, trans immigrants will be greatly impacted.ā
‘Weāre ready to keep fighting’
Trans Queer Pueblo is a Phoenix-based organization that provides health care and other services to undocumented LGBTQ immigrants and migrants of color. The group, among other things, also advocates on behalf of those who are in U.S. Immigration and Customs Enforcement detention centers.
āWe refuse to wait for politicians to change systems that were designed to hurt us,ā Trans Queer Pueblo told the Blade in a statement. āThe elections saw both political parties using our trans and migrant identities as political pawns.ā
Trans Queer Pueblo acknowledged concerns over the incoming administrationās immigration policies. It added, however, Arizonaās Proposition 314 is āour biggest battle.ā
Arizona voters last month approved Proposition 314, which is also known as the Secure the Border Act.
Trans Queer Pueblo notes it āmakes it a crime for undocumented people to exist anywhere, with arrests possible anywhere, including schools and hospitals.ā The group pointed out Proposition 314 also applies to asylum seekers.
āWe are building a future where LGBTQ+ migrants of color can live free, healthy, and secure, deciding our own destiny without fear,ā Trans Queer Pueblo told the Blade. āThis new administration will not change our mission ā weāre ready to keep fighting.ā
Contreras stressed Bienestar āremains committed to advocate for the rights and safety of all migrants and asylum seekers.ā GutiĆ©rrez added it is ācrucial for LGBTQ+ migrants to know that they are not alone.ā
āWe will continue to organize and mobilize,ā she said. āWe must resist unjust treatments and laws.ā
President Joe Biden thanked a crowd of HIV/AIDS treatment advocates and community members on the South Lawn of the White House on Sunday for āthe honor of our lives to serve in the White House, the peopleās house, your house.ā
āWe felt a special obligation to use this sacred place to ensure everyone is seen and the story of America is heard,ā the president continued. āThatās why weāre all together here at this World AIDS Day.ā
The president and first lady gave their remarks at a White House commemoration of World AIDS Day. They were joined by activist Jeanne White-Ginder. Panels of the NAMES Project AIDS Memorial Quilt were on display on the lawn behind them as they spoke to guests.
A team of volunteers worked in the morning to assemble the panels in preparation for public viewing. One of the volunteers, Jerry Suarez, told the Blade that he had lost both his brother and father to the epidemic.
āI came here to bring my dad and brother here,ā Suarez told the Blade as he motioned toward the panels on the quilt.
āI couldnāt be prouder of the work the NAMES Project has done in taking care of my father and taking care of my brother,ā continued Suarez. āI feel like this is the moment weāve always wanted ā we wanted for the longest time to have a sitting president to actually even notice us, and in ā96 when the Clintons came to the display, that was the first time . . . but we never could quite get in the door on the other side of the fence.ā
The AIDS Memorial Quilt is overseen by the National AIDS Memorial. Sections of the quilt have been displayed throughout the world. According to the National AIDS Memorial, the last display of the entire AIDS Memorial Quilt was in October of 1996 when it covered the National Mall. The quilt is considered the worldās largest community folk art piece, with nearly 50,000 panels representing more than 100,000 names.
This marks the first time that panels of the quilt have been displayed on the South Lawn of the White House. President Barack Obama displayed a section of the quilt in the East Wing of the White House in 2012.
āAs I look at this beautiful quilt, with its bright colors, the names in big block letters, renderings of lives and loves, I see it as a mom,ā Jill Biden said. āAnd I think of the mothers who stitched their pain into a patchwork panel so that the world would remember their child. Not as a victim of a vicious disease, but as a son who had played in a high school jazz band, as a child who proudly grew up to serve our nation in uniform, as the daughter whose favorite holiday was Christmas.ā
āJeanne,ā the first lady turned to White-Ginder. āI know you didnāt choose the life of an activist, but when Ryan got sick 40 years ago, you stepped up in the fight against discrimination and helped the world see this disease more clearly.ā
White-Ginder is the mother of Ryan White, for whom the Ryan White HIV/AIDS Program (RWHAP) is named. RWHAP is the largest federal program focused on HIV, according to the Health Resources and Services Administration.
White-Ginder said, āIn 1990 . . . shortly after Ryan died, Sen. [Ted] Kennedy asked me if I would come to Washington to explain to senators how vital it was to pass the AIDS bill, which had been recently named after my son, called the Ryan White CARE Act. He said that I was something much more powerful than a lobbyist: I was a mother.ā
āThe first senator I met getting off the elevator at the Capitol was Sen. Joe Biden,ā White-Ginder continued. āWith tears in his eyes, he told me that he had lost his child, and that the only way that he had found to deal with . . . the grief was through a purpose.ā
White-Ginder said, āIn many ways, personal grief has fueled the AIDS movement since the beginning. Both Republicans and Democrats in Congress have supported Ryanās bill, and as a result, countless lives have been saved.ā
President Biden thanked retiring associate administrator for HIV/AIDS Bureau Health Resources and Services Administration Dr. Laura Cheever, as well as former chief medical adviser to the president Anthony Fauci, and the recently deceased A. Cornelius Baker for their contributions to the fight against HIV/AIDS.
President Biden lauded the Presidentās Emergency Plan for AIDS Relief (PEPFAR), launched by George W. Bush, as the āsingle largest investment of any nation in the world to take on a single disease, saving more than 26 million lives so far.ā
As a senator, Biden helped lead the bipartisan effort to authorize PEPFAR in 2003. Biden reauthorized PEPFAR last year and announced on Sundayās World AIDS Day commemoration that he is āgoing to call on Congress to pass a five year PEPFAR reauthorization to sustain these gains made globally.ā
The president promoted his administrationās National HIV/AIDS Strategy and discussed access to treatment and prevention as well as fighting stigma and discrimination.
Finally, the president announced that before the end of his term, the Centers for Medicare and Medicaid Services will update its guidance on HIV care, āencouraging states to adopt the best practices using the latest science and technology.”
Guests were invited to view the display of panels of the AIDS Memorial Quilt on the South Lawn of the White House at the end of the program.
National
Antony Blinken, USAID mark World AIDS Day
Officials reiterate Biden-Harris administration’s commitment to end pandemic
Secretary of State Antony Blinken and the U.S. Agency for International Development on Sunday marked World AIDS Day.
Blinken in his statement echoed the Biden-Harris administration’s call “for collective action with partners around the world to sustain and accelerate the great progress we have made toward ending HIV/AIDS as a public health threat by 2030.”
“Over the past four years, the State Department has worked tirelessly to save lives through the Presidentās Emergency Plan for AIDS Relief (PEPFAR),” the statement reads. “In partnership with foreign governments, PEPFAR has changed the trajectory of the HIV/AIDS pandemic and now supports more than 20 million people on lifesaving treatment across 55 countries around the world. Independent analyses have documented a direct link of this lifesaving work to economic growth across PEPFAR partner countries. Bipartisan action on a clean, five-year reauthorization of PEPFAR is essential to ending HIV/AIDS as a public health threat and to implementing the programās plans to sustain success over the long term through partner country and community-led and managed programs.”
Blinken further stressed World AIDS Day “is a day to remember the more than 42 million lives lost to HIV/AIDS ā a stark reminder of the threat this virus continues to pose if we do not ensure that partner countries have the vision and capacity to sustain a bold response.”
“We must continue to chart a course together that will help communities stay safe and prosperous by ending HIV/AIDS as a public health threat,” he said.
USAID spokesperson Benjamin Suarato in a statement echoed Blinken.
“Each year, we observe World AIDS Day to honor people living with and affected by HIV, remember those we have lost, and recommit to ending HIV as a public health threat by 2030,” said Suarato. “For decades, USAID has worked to support those affected by HIV, as well as the health workers, scientists, researchers, advocates, and communities dedicated to the HIV response.”
Suarato noted this year’s World AIDS Day’s theme, “Collective Action: Sustain and Accelerate HIV Progress,” “underscores the long-term leadership of the United States to galvanize global solidarity and make critical investments to reduce HIV transmission, improve access to treatment, and advance transformative partnerships to sustain a locally-led HIV response.” Suarato also highlighted PEPFAR has saved “more than 25 million lives and helped more than 5.5 million babies to be born HIV-free across 55 countries.”
“We recognize that ending HIV as a public health threat requires enduring cooperation with partner country governments, civil society, faith-based, and other non-governmental organizations, researchers, and scientists,” said Suarato. “It also requires us to continue to elevate the leadership of communities and individuals living with and affected by HIV. On this World AIDS Day, USAID reaffirms our dedication to collective action.”
President Joe Biden and first lady Jill Biden on Sunday will commemorate World AIDS Day at the White House. AIDS Memorial Quilt panels will be shown on the White House’s South Lawn for the first time.
The Washington Blade will have further coverage of the White House commemoration.