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AIDS 2012: Sebelius unveils public-private collaborations to fight disease

HHS to work with MAC AIDS Fund, Walgreens, others

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Secretary of Health & Human Services Kathleen Sebelius announced four HIV/AIDS private-public initiatives Sunday. (Blade photo by Michael Key)

Health & Human Services Secretary Kathleen Sebelius announced four new public-private initiatives on Sunday night aimed at removing barriers that cause some living with HIV/AIDS within the United States to fall out of care.

Sebelius announced the projects — including a new $4.5 million multi-year project with the MAC AIDS Fund called the Care for Life Initiative — during remarks she delivered as the final speaker on the opening night of the 19th International AIDS Conference, which is being held in the United States for the first time since 1990. An estimated 25,000 are in attendance for the week-long conference in D.C.

“Perhaps the most important principle in our national strategy is one we’ve been reminded of over and over again in our response to HIV/AIDS: none of us can do this alone,” Sebelius said. “That’s why we’re making a new effort to reach to community-based organizations, businesses, foundations, NGOs, faith organizations and more.”

The Care for Life Initiative is a collaboration of the MAC AIDS fund, which was established in 1994Ā to support people who are living with HIV/AIDS across the world, and has three arms that aim to keep people with HIV/AIDS within care, according to a statement from the organization:

  • A $4 million partnership with AIDS United over the next three years toĀ create an innovation fund on the both the national and regional levels to improveĀ retention in care and treatment adherence. Geographic focusesĀ will be determined based on need and capacity of the local providersĀ to address that need. It will also involve an open call for proposals.
  • Working with theĀ Health Resources and Services Administration, or HRSA, for a pilot launch of UCARE4LIFE, an evidence-basedĀ program that will employ mobile texting to improve care retention andĀ medication adherence. With a focus on SouthernĀ states, the two-year project consists ofĀ developing a message library for delivering phone text notificationsĀ to HIV-positive individuals — in English and Spanish — regarding medical appointmentĀ reminders and taking medications.
  • MAC AIDS Fund will work with HHS and the President’s Emergency Plan for AIDS Relief to convene a meetingĀ of international leaders in fall 2012 on leveraging global lessons on HIV care.Ā This forum is expected to exploreĀ lessons from PEPFAR that can be applied to the United States for best practices on treatment and retention.

According to the MAC AIDS Fund, under the current system, one in two people living with HIV/AIDS in the United States falls out of care.

Nancy Mahon, global executive director of the MAC AIDS Funds, said the Care for Life Initiative is important because it uses new technologies and ideas in its outreach to people with HIV/AIDS.

“We cannot end the epidemic without breakthrough approaches that support andĀ empower those living with HIV/AIDS to stay connected to the care and life-savingĀ treatment they deserve,ā€ Mahon said.

Besides the Care for Life Initiative, Sebelius also hit on the other three initiatives during her remarks. With the pharmaceutical retailer Walgreens, she announced a three-yearĀ partnership with the Centers for Disease Control to explore ways in whichĀ pharmaciesĀ canĀ helpĀ patientsĀ stayĀ onĀ theirĀ medications. According to a news statement, Walgreens is supplying nearly $1 million in in-kind services for this initiative.

WithĀ Medscape,Ā aĀ leadingĀ providerĀ ofĀ onlineĀ continuingĀ educationĀ forĀ U.S.Ā clinicians, Sebelius unveiled partnershipĀ trainingĀ programs with the Centers for Medicare & Medicaid toĀ helpĀ cliniciansĀ betterĀ understandĀ andĀ address HIV patients’ needs. According to a news statement, three new training modules have already been created for physicians, nurses and other medical professionals.

Finally, Sebelius announced that HHS is partnering with theĀ eightĀ largestĀ AIDSĀ drugĀ companies — AbbotĀ Laboratories,Ā BoehringerĀ Ingelheim,Ā BristolĀ MyersĀ Squibb,Ā Gilead,Ā Genentech,Ā JohnsonĀ &Ā Johnson,Ā MerckĀ andĀ ViiV — toĀ createĀ aĀ singleĀ applicationĀ formĀ forĀ AIDSĀ medicationsĀ offeredĀ throughĀ theirĀ patientĀ assistanceĀ programs.

“IĀ wantĀ toĀ thankĀ allĀ ofĀ theseĀ partnersĀ forĀ steppingĀ up,” Sebelius said. “AndĀ weĀ willĀ continueĀ toĀ seekĀ out newĀ public-privateĀ collaborationsĀ thatĀ willĀ helpĀ usĀ beatĀ thisĀ disease.”

In addition to announcing the new public-private partnerships, Sebelius also revealed that the Food & Drug Administration would announce this week that moreĀ thanĀ 150Ā antiretroviralĀ drugsĀ areĀ nowĀ availableĀ throughĀ PEPFAR.

The secretary also enumerated earlier initiatives of the Obama administration, including last week’s decision to distribute nearly $80 million to the states “toĀ allowĀ themĀ toĀ fullyĀ clear”Ā wait lists for AIDS Drug Assistance Programs, which provide HIV/AIDS drugs to low-income people. An estimated 2,000 people nationwide had been awaiting drugs through programs.

According to a statement from HHS, aroundĀ $69 million will be sent to 25 states and territories and, based on estimates provided by the states, will eliminate any waiting lists. The remaining $10 million — a portion of which was allocated by the Affordable Care Act — will be distributed to community-based health clinics nationwide to expand access for 14,000 new HIV/AIDS patients for medical and support services.

Other initiatives against HIV/AIDS under the Obama administration that Sebelius touted were recent FDA approval of an at-home HIV test and using Truvada to prevent HIV infection. Sebelius also credited the Bush administration, calling PEPFAR, which was established under the previous administration, one of “theĀ greatĀ healthĀ successĀ storiesĀ ofĀ theĀ 21stĀ century.”

“Our task now is to make it even stronger,” Sebelius said.

“Under President Obama, we’re on pace to achieve an ambitious goal of reaching an additional two million people around the world with life-saving treatment by the end of 2013. At the same time, we’re putting a renewed focus on the key ‘combination prevention’ interventions that have proven most effective in combating HIV.”

The secretary’s mention of PEPFAR received among the most applause of anything discussed that evening before an audience that included many HIV/AIDS advocates from overseas. Obama’s fiscal year 2013 budget request cuts the program by half a billion dollars, but the White House has said PEPFAR is an example of a program that is doing more with less because of the reduced cost of drugs.

Sebelius wasn’t the only public official representing the United States on the stage during the opening night of the conference. Rep. Barbara Lee (D-Calif.), a renowned LGBT and HIV/AIDS advocate, also spoke on stage to call for an end to the epidemic, observing it has had a particularly devastating impact on black Americans.

“Although AIDS has made the transition from a death sentence to a chronic disease, new infections unfortunately continue at alarming rates,” Lee said. “HIV/AIDS disproportionately affects no group of people in our country more than African Americans. Of the 1.4 million people in the United States living with HIV, nearly half are black men and women, even though blacks make up 14 percent of the population.”

Last week, Lee announced that had introduced into the U.S. House legislation called the “Ending the HIV/AIDS Epidemic Act.” The bill has 26 co-sponsors who are all Democrats and aims toĀ establish a policy and financing framework to eliminate AIDS domestically and abroad.

The bill aims to fight HIV/AIDS by providing additional funds for programs such as the AIDS Drug Assistance Programs; addressing policy barriers to accessing prevention and care, such as encouraging condom use in prisons; and calling for a more advanced strategy overseas to end the global AIDS epidemic.

D.C. Mayor Vincent Gray (Washington Blade photo by Michael Key)

D.C. Mayor Vincent Gray also took to the stage to welcome international attendees to D.C. and talk about how HIV/AIDS has impacted the city.

“HIV/AIDS has crossed all racial, ethnic, religious and socio-economic borders,” Gray said. “It is a disease that knows no boundaries.”

According to Gray, an estimated 20,000 people in D.C. have been infected with HIV/AIDS, and 10,000 residents have died as a result of the disease.

Other speakers on Sunday were Annah Sango, a Zimbabwe advocate living with HIV who seeks visibility for female patients, World Bank President Jim Yong Kim, who said he was the first World Bank president to the address the international conference, UNAIDS Executive Director Michel SidibĆ©, South African Deputy President Kgalema Motlanthe and Mark Dybul, global AIDS coordinator for President George W. Bush who touted that administration’s achievements in the global AIDS fight.

The co-chairs of the conference, Elly Katabira, a Ugandan activist and president of the International AIDS Society, and Diane Havlir, chief of HIV/AIDS Division at the University of California, San Francisco, welcomed attendees to the conference. U.N. Secretary General Ban Ki-Moon prepared a video message for attendees.

Also on Sunday, the White House unveiled a video message from Obama welcoming the international attendees to the conference. The video message was prepared in lieu of a live appearance by Obama at the conference.

In the video, Obama talks about HIV/AIDS advocates’ commitment to fighting the disease and a voice-over talks about discovery of the disease in the 1980s as well as activism and scientific advances to thwart it.

Watch the video below:

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Federal Government

HHS to retire 988 crisis lifeline for LGBTQ youth

Trevor Project warns the move will ‘put their lives at risk’

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Robert F. Kennedy, Jr. appears on HBO's "Real Time with Bill Maher" in April 2024. (Screen capture via YouTube)

The U.S. Department of Health and Human Services is planning to retire the national 988 crisis lifeline for LGBTQ youth on Oct. 1, according to a preliminary budget document obtained by the Washington Post.

Introduced during the Biden-Harris administration in 2022, the hotline connects callers with counselors who are trained to work with this population, who are four times likelier to attempt suicide than their cisgender or heterosexual counterparts.

ā€œSuicide prevention is about risk, not identity,” said Jaymes Black, CEO of the Trevor Project, which provides emergency crisis support for LGBTQ youth and has contracted with HHS to take calls routed through 988.

“Ending the 988 Suicide and Crisis Lifeline’s LGBTQ+ youth specialized services will not just strip away access from millions of LGBTQ+ kids and teens — it will put their lives at risk,ā€ they said in a statement. ā€œThese programs were implemented to address a proven, unprecedented, and ongoing mental health crisis among our nation’s young people with strong bipartisan support in Congress and signed into law by President Trump himself.ā€

“I want to be clear to all LGBTQ+ young people: This news, while upsetting, is not final,” Black said. “And regardless of federal funding shifts, the Trevor Project remains available 24/7 for anyone who needs us, just as we always have.ā€

The service for LGBTQ youth has received 1.3 million calls, texts, or chats since its debut, with an average of 2,100 contacts per day in February.

ā€œI worry deeply that we will see more LGBTQ young people reach a crisis state and not have anyone there to help them through that,ā€ said Janson Wu, director of advocacy and government affairs at the Trevor Project. ā€œI worry that LGBTQ young people will reach out to 988 and not receive a compassionate and welcoming voice on the other end — and that will only deepen their crisis.ā€

Under Trump’s HHS secretary, Robert F. Kennedy, Jr., the agency’s departments and divisions have experienced drastic cuts, with a planned reduction in force of 20,000 full-time employees. The Substance Abuse and Mental Health Services Administration has been sunset and mental health services consolidated into the newly formed Administration for a Healthy America.

The budget document reveals, per Mother Jones, “further sweeping cuts to HHS, including a 40 percent budget cut to the National Institutes of Health; elimination of funding for Head Start, the early childhood education program for low-income families; and a 44 percent funding cut to the Centers for Disease Control, including all the agency’s chronic disease programs.”

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U.S. Supreme Court

Supreme Court hears oral arguments in LGBTQ education case

Mahmoud v. Taylor plaintiffs argue for right to opt-out of LGBTQ inclusive lessons

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U.S. Supreme Court (Washington Blade photo by Michael Key)

The U.S. Supreme Court on Tuesday heard oral arguments in Mahmoud v. Taylor, a case about whether Montgomery County, Md., public schools violated the First Amendment rights of parents by not providing them an opportunity to opt their children out of reading storybooks that were part of an LGBTQ-inclusive literacy curriculum.

The school district voted in early 2022 to allow books featuring LGBTQ characters in elementary school language arts classes. When the county announced that parents would not be able to excuse their kids from these lessons, they sued on the grounds that their freedom to exercise the teachings of their Muslim, Jewish, and Christian faiths had been infringed.

The lower federal courts declined to compel the district to temporarily provide advance notice and an opportunity to opt-out of the LGBTQ inclusive curricula, and the 4th U.S. Circuit Court of Appeals determined that the parents had not shown that exposure to the storybooks compelled them to violate their religion.

ā€œLGBTQ+ stories matter,” Human Rights Campaign President Kelley Robinson said in a statement Tuesday. ā€œThey matter so students can see themselves and their families in the books they read — so they can know they’re not alone. And they matter for all students who need to learn about the world around them and understand that while we may all be different, we all deserve to be valued and loved.”

She added, “All students lose when we limit what they can learn, what they can read, and what their teachers can say. The Supreme Court should reject this attempt to silence our educators and ban our stories.ā€

GLAD Law, NCLR, Family Equality, and COLAGE submitted a 40-page amicus brief on April 9, which argued the storybooks “fit squarely” within the district’s language arts curriculum, the petitioners challenging the materials incorrectly characterized them as “specialized curriculum,” and that their request for a “mandated notice-and-opt-out requirement” threatens “to sweep far more broadly.”

Lambda Legal, the Leadership Conference on Civil and Human Rights, PFLAG, and the National Women’s Law Center announced their submission of a 31-page amicus brief in a press release on April 11.

ā€œAll students benefit from a school climate that promotes acceptance and respect,ā€ said Karen Loewy, senior counsel and director of constitutional law practice at Lambda Legal.  ā€œEnsuring that students can see themselves in the curriculum and learn about students who are different is critical for creating a positive school environment. This is particularly crucial for LGBTQ+ students and students with LGBTQ+ family members who already face unique challenges.ā€

The organizations’ brief cited extensive social science research pointing to the benefits of LGBTQ-inclusive instruction like “age-appropriate storybooks featuring diverse families and identities” benefits all students regardless of their identities.

Also weighing in with amici briefs on behalf of Montgomery County Public Schools were the National Education Association, the ACLU, and the American Psychological Association.

Those writing in support of the parents challenging the district’s policy included the Center for American Liberty, the Manhattan Institute, Parents Defending Education, the Alliance Defending Freedom, the Trump-Vance administration’s U.S. Department of Justice, and a coalition of Republican members of Congress.

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U.S. Supreme Court

LGBTQ groups: SCOTUS case threatens coverage of preventative services beyond PrEP

Kennedy v. Braidwood oral arguments heard Monday

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

Following Monday’s oral arguments before the U.S. Supreme Court in Kennedy v. Braidwood Management, Inc., LGBTQ groups issued statements warning the case could imperil coverage for a broad swath of preventative services and medications beyond PrEP, which is used to reduce the risk of transmitting HIV through sex.

Plaintiffs brought the case to challenge a requirement that insurers and group health plans cover the drug regimen, arguing that the mandate “encourage[s] homosexual behavior, intravenous drug use, and sexual activity outside of marriage between one man and one woman.ā€

The case has been broadened, however, such that cancer screenings, heart disease medications, medications for infants, and several other preventive care services are in jeopardy, according to a press release that GLAAD, Lambda Legal, PrEP4All, Harvard Law’s Center for Health Law and Policy Innovation (CHLPI), and the Center for HIV Law and Policy (CHLP) released on Monday.

The Trump-Vance administration has argued the independent task force responsible for recommending which preventative services must be covered with no cost-sharing for patients is constitutional because the secretary of the U.S. Department of Health and Human Services can exercise veto power and fire members of the volunteer panel of national experts in disease prevention and evidence-based medicine.

While HHS secretaries have not exercised these powers since the Affordable Care Act was passed in 2010, Braidwood could mean Trump’s health secretary, Robert F. Kennedy Jr., takes a leading role in determining which services are included in the coverage mandate.

Roll Call notes the Supreme Court case comes as the administration has suspended grants to organizations that provide care for and research HIV while the ongoing restructuring of HHS has raised questions about whether the ā€œEnding the HIV Epidemicā€ begun under Trump’s first term will be continued.

ā€œToday’s Supreme Court hearing in the Braidwood case is a pivotal moment for the health and rights of all Americans,” said GLAAD President Sarah Kate Ellis. “This case, rooted in discriminatory objections to medical necessities like PrEP, can undermine efforts to end the HIV epidemic and also jeopardize access to essential services like cancer screenings and heart disease medications, disproportionately affecting LGBTQ people and communities of color.”

She added, “Religious exemptions should not be weaponized to erode healthcare protections and restrict medically necessary, life-saving preventative healthcare for every American.ā€

Lambda Legal HIV Project Director Jose Abrigo said, ā€œThe Braidwood case is about whether science or politics will guide our nation’s public health policy. Allowing ideological or religious objections to override scientific consensus would set a dangerous precedent. Although this case began with an attack on PrEP coverage, a critical HIV prevention tool, it would be a serious mistake to think this only affects LGBTQ people.”

“The real target is one of the pillars of the Affordable Care Act: The preventive services protections,” Abrigo said. “That includes cancer screenings, heart disease prevention, diabetes testing, and more. If the plaintiffs succeed, the consequences will be felt across every community in this country, by anyone who relies on preventive care to stay healthy.”

He continued, “What’s at stake is whether we will uphold the promise of affordable and accessible health care for all or allow a small group of ideologues to dismantle it for everyone. We as a country are only as healthy as our neighbors and an attack on one group’s rights is an attack on all.ā€

PrEP4All Executive Director Jeremiah Johnson said, “We are hopeful that the justices will maintain ACA protections for PrEP and other preventive services, however, advocates are poised to fight for access no matter the outcome.”

He continued, “Implementing cost-sharing  would have an enormous impact on all Americans, including LGBTQ+ individuals. Over 150 million people could suddenly find themselves having to dig deep into already strained household budgets to pay for care that they had previously received for free. Even small amounts of cost sharing lead to drops in access to preventive services.”

“For PrEP, just a $10 increase in the cost of medication doubled PrEP abandonment rates in a 2024 modeling study,” Johnson said. “Loss of PrEP access would be devastating with so much recent progress in reining in new HIV infections in the U.S. This would also be a particularly disappointing time to lose comprehensive coverage for PrEP with a once every six month injectable version set to be approved this summer.ā€

ā€œToday’s oral arguments in the Braidwood case underscore what is at stake for the health and well-being of millions of Americans,” said CHLPI Clinical Fellow Anu Dairkee. “This case is not just about legal technicalities — it is about whether people across the country will continue to have access to the preventive health services they need, without cost sharing, regardless of who they are or where they come from.”

She continued, “Since the Affordable Care Act’s preventive services provision took effect in 2010, Americans have benefited from a dramatic increase in the use of services that detect disease early, promote healthy living, and reduce long-term health costs. These benefits are rooted in the work of leading scientists and public health experts, including the U.S. Preventive Services Task Force, whose recommendations are based on rigorous, peer-reviewed evidence.”

“Any shift away from cost-free access to preventive care could have wide-ranging implications, potentially limiting access for those who are already navigating economic hardship and health disparities,” Dairkee said. “If Braidwood prevails, the consequences will be felt nationwide. We risk losing access to lifesaving screenings and preventive treatments that have become standard care over the past decade.”

“This case should serve as a wake-up call: Science, not politics, must guide our health care system,” she said. “The health of our nation depends on it.ā€

ā€œWe are grateful for the Justices who steadfastly centered constitutionality and didn’t allow a deadly political agenda to deter them from their job at hand,” said CHLP Staff Attorney Kae Greenberg. “While we won’t know the final decision until June, what we do know now is not having access to a full range of preventative healthcare is deadly for all of us, especially those who live at the intersections of racial, gender and economic injustice.”

“We are crystal clear how the efforts to undermine the ACA, of which this is a very clear attempt, fit part and parcel into an overall agenda to rollback so much of the ways our communities access dignity and justice,” he said. “Although the plaintiffs’ arguments today were cloaked in esoteric legal language, at it’s heart, this case revolves around the Christian Right’s objection to ‘supporting’ those who they do not agree with, and is simply going to result in people dying who would otherwise have lived long lives.”

“This is why CHLP is invested and continues in advocacy with our partners, many of whom are included here,” Greenberg said.

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