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Obama AIDS panel bucks White House on drug funds

Resolution calls for $126 million ADAP emergency measure

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Members of the Presidential Advisory Council on HIV/AIDS this week called on President Obama and Congress to approve $126 million in emergency funds for the struggling AIDS Drug Assistance Program. (Photo by Pete Souza, courtesy White House)

President Obama’s newly appointed Presidential Advisory Council on HIV/AIDS adopted a resolution Tuesday urging the White House and Congress to do something they have been reluctant to do: approve $126 million in emergency funds for the struggling AIDS Drug Assistance Program.

The federal program, which is operated jointly with states, provides subsidies for life-saving anti-retroviral drugs needed by low-income people with HIV and AIDS who lack health insurance coverage.

Due to several developments, including sharp budget cuts by states, a record 1,924 people eligible to enroll in the program in 11 states have been placed on waiting lists as state ADAPs have run out of money to pay for the drugs, state officials have said. The waiting lists are expected to grow in the coming weeks and months.

AIDS activists have criticized the White House and Democratic leaders in Congress for not taking immediate steps to push the emergency funding this year, saying people on the waiting lists face possible life-threatening illnesses related to HIV without their medication.

More than 50 members of the House, including gay Reps. Barney Frank (D-Mass.) and Tammy Baldwin (D-Wis.) sent a petition to the White House earlier this year calling for $126 million in supplemental funds for ADAP in the current fiscal year.

The presidential AIDS panel, known as PACHA, adopted its resolution at a special conference call meeting Tuesday.

The conference call came after some PACHA members complained that the panel was distracted from adopting the resolution and addressing other important business at its previous in-person meeting at the White House in April by administration staffers who overly “stage managed” the meeting, according to insiders familiar with the panel.

The 24-member PACHA includes seven out gay members. It’s chaired by Dr. Helen Gale, a nationally recognized AIDS physician and former top official at the U.S. Centers for Disease Control & Prevention.

“I don’t think the PACHA is being stage managed, but I do think that it is being over handled,” said PACHA member Phill Wilson, executive director of the Black AIDS Institute in Los Angeles.

Wilson said it would be an exaggeration to characterize as a “rebellion” the call by PACHA members for a special meeting this week to vote on the ADAP resolution, as one source familiar with PACHA called it.

But he said PACHA members assigned to a subcommittee that monitors ADAP issues made it clear that it would be unacceptable for the advisory body to wait until its next regularly scheduled meeting in September to take up the ADAP issue.

Wilson and fellow PACHA member A. Cornelius Baker, former executive director of the National Association of People with AIDS and the Whitman-Walker Clinic, said the newly reconstituted PACHA appeared to be having some organizational and logistical problems.

Among other things, Baker and PACHA member Rosie Perez, actress and AIDS activist, expressed concern at the April meeting that White House officials arranged for the meeting to be held in an auditorium at the Eisenhower Executive Office Building next to the White House that was not conducive for members to conduct business.

Most of the first day of the two-day meeting in April was devoted to listening to comments by members of the public, including AIDS activists. Although a precedent for listening to public comments began under the Clinton administration, one AIDS activist attending the April meeting said it evolved into a “chaotic” town hall type meeting that prevented members — who were appointed for their expertise in various aspects of public health, medicine and public policy — from tackling issues such as ADAP.

Sessions on the second day were not open to the public, raising questions that administration staffers violated a federal law that requires all federal government advisory bodies to conduct business in public.

Christopher Bates, PACHA’s staff executive director, told activists who complained about the closed meeting that the session was limited to discussing “administrative” matters and no official business was conducted.

Wilson and Baker said this week that the White House and the Department of Health & Human Services, which has direct supervision over PACHA, were working to correct the problems, with the possibility that new meeting space would be found.

But new organizational and technical issues surfaced during Tuesday’s conference call when an audio muting mechanism prevented members of the public who were approved in advance to speak from being heard by Gale, who presided over the call.

When a roll call vote was taken on the ADAP resolution, some of the PACHA members also could not be heard, alerting the staff that a technical glitch kept the PACHA members’ phone on mute.

As required by a federal advisory body statute, the conference call meeting was announced two weeks earlier in the Federal Register, which instructed people interested in speaking during a public comment period how to dial in to the call.

A technician facilitating the conference call eventually lifted the muting mechanism to allow everyone to speak. But shortly after that happened, someone apparently called the meeting to an end while the phone lines remained open. At least two callers expressed outrage that they were not allowed to speak, and several callers began their own discussion before someone terminated the conference call.

Before the confusion began, Gale announced the roll call vote had been completed and the resolution calling for the $126 million emergency ADAP funds had been approved.

Prior to the discussion and vote on the resolution, HHS official Deborah Parham told call participants the administration would allocate $17.5 million in Ryan White funds in August that states could use for their ADAP programs. She said additional Ryan White funds were available to help struggling states in their overall programs to assist people with HIV/AIDS.

HHS recognizes “the need to improve access to critical HIV/AIDS prescription drugs and we’re working to prevent and ultimately eliminate the need for ADAP waiting lists,” Parham told call participants. But she did not say whether the administration would agree to the $126 million emergency funding allocation for ADAP called for by the PACHA resolution.

President Bill Clinton created PACHA in the 1990s. President George W. Bush retained the panel and continued Clinton’s practice of naming several gays to serve on PACHA, including several gay Republican activists.

The Obama administration did not call any PACHA meetings in its first year in office, prompting some activists to ask if the new administration planned to retain the panel. But in February, the White House disclosed it had dismissed all PACHA members appointed by Bush and introduced what it called a “reconstituted” PACHA with 24 new members.

According to Jeff Crowley, director of the White House Office of National AIDS Policy, the new members were appointed by Health & Human Services Secretary Kathleen Sebelius with White House consultation.

At the first meeting Feb. 2, Sebelius administered the oath of office for members and said she and the White House would utilize PACHA as a “platform for the administration to share our plans and insights” on AIDS programs and proposals.

“Today, I’m pleased to have a new group of experts joining PACHA,” Obama said in a statement released at the February meeting. “And I look forward to hearing from the council about our continued efforts to prevent the spread of HIV infections in the United States and to provide care and treatment to people living with HIV/AIDS around the world.”

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4 Comments

4 Comments

  1. Prevention Worth A Pound

    July 1, 2010 at 11:10 pm

    Unfortunately those who contracted HIV are now paying the price in a tight economy. They won’t get much sympathy from the House or Senate. The question is should they be getting crucial funding for a disease that is avoidable by being safe during sexual encounters. It’s nice to throw caution to the wind but the consequences can be deadly. HIV is still a potentially fatal disease. Pharmaceutical companies are the real culprit for charging exorbitant prices for the anti viral medications.

  2. Brian

    July 2, 2010 at 7:34 pm

    LOL – Wilson and Baker, nothing more than AIDS Inc. profiteers. We need new leadership not tired only personalities.

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Md. biotech company’s HIV cure project clears first hurdle

‘We all have something to be excited about’

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HIV cure, gay news, Washington Blade
‘We all have something to be excited about,’ said AGT CEO Jeff Galvin.

American Gene Technologies, the Rockville, Md., biotech company, has announced that the first patient to receive its genetically engineered treatment therapy aimed at curing people of HIV/AIDS encountered no adverse side effects from the treatment.

In an Aug. 2 statement, AGT said that based on the data obtained from Patient One in its Phase 1 human trial of its HIV treatment called AGT103-T, the U.S. Food and Drug Administration’s Data and Safety Monitoring Board voted unanimously to allow AGT to continue its HIV cure program without modification.

“The AGT103-T pipeline is a therapy for treating HIV disease,” the company’s statement says. “The therapy is designed to induce durable viral suppression by delivering therapeutic genes to the recipient’s immune cells,” it says. “The resulting immune cells are expected to survive attack by HIV and durably suppress the virus at undetectable levels without the need for antiretroviral treatment.”

The thumbs up decision by the Data and Safety Monitoring Board allows the company to continue its clinical trial with more participants to further confirm the HIV treatment’s safety outcome. The next phase in the trials will be to determine the treatment’s effectiveness in fully protecting the human body from HIV.

“We have six more patients,” said AGT CEO Jeff Galvin in referring to the patients who will be tested for possible adverse side effects in the coming weeks. Galvin spoke at a July 29 gathering to celebrate the success of Patient One at AGT’s headquarters offices in Rockville.

“If this works, they will be permanently immune from HIV,” he said. “Just think what this can do with the epidemic. We all have something to be excited about,” he told the gathering of about 100 people.

“Keep your fingers crossed. Let’s all keep hoping and praying,” Galvin said. “We will know by the middle of next year,” he said, referring to when the human trials will likely determine whether the AGT103-T treatment, which has successfully stopped HIV from infecting human cells in laboratory experiments, will work just as effectively on people with HIV.

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92% of LGBTQ+ adults have received at least one dose for COVID-19

59% of LGBTQ+ respondents reported Covid-19 made them feel socially isolated, & 50% reported that it impacted their mental health.

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Photo Credit: County of Los Angeles

NEW YORK – A summary of data collected as part of the annual LGBTQ+ Community Survey by the Human Rights Campaign Foundation in partnership and supported by The Rockefeller Foundation in New York City, found that the vast majority – 92% – of LGBTQ+ adults surveyed in the United States had received at least one vaccination for Covid-19.

Although vaccination rates vary somewhat within the LGBTQ+ community, the rates across race and ethnicity, gender identity and sexual orientation, and age are well above the rates for various general adult populations where the data are available:

  • By race and ethnicity, 90% of Latinx respondents, 85% of Black respondents, 96% of Asian or Pacific Islander respondents, and 85% of Native American/Alaskan and Middle Eastern/North African LGBTQ+ adults, among other race identities have received at least one dose of a Covid-19 vaccine.
  • By gender identity and sexual orientation, 92% of cisgender lesbian and bi+ women, 93% of cisgender gay and bi+ men, and 92% of transgender and non-binary people have received at least one dose of a Covid-19 vaccine.
  • By age, 91% of LGBTQ+ respondents aged 18-34, 92% of LGBTQ+ respondents aged 35-5, and 94% of LGBTQ+ respondents aged 55 and older have received at least one dose of a Covid-19 vaccine

While vaccination rates are high, Covid-19 took a toll on well-being among respondents. The survey finds that 59% of LGBTQ+ respondents reported that Covid-19 made them feel socially isolated, and 50% of respondents reported that it impacted their mental health.

“Increasing vaccination rates among communities of color is a major focus for us, and working with the Human Rights Campaign Foundation gives us the opportunity to better understand the impact of Covid-19 on LGBTQ communities of color. We look forward to continuing our support and outreach.” said Otis Rolley, Senior Vice President of Equity and Economic Opportunity at The Rockefeller Foundation.

Photo Credit: County of Los Angeles

The data finds the Covid-19 pandemic led to social and financial loss, especially among LGBTQ+ people of color:

  • 21% of LGBTQ+ adults surveyed reported that a close family member or friend has died from Covid-19
  • LGBTQ+ people of color surveyed reported higher levels of loss due to Covid-19 compared to white LGBTQ+ people:
    • 30% of Latinx LGBTQ+ respondents
    • 28% of Black LGBTQ+ respondents
    • 25% of Native American/Alaskan and Middle Eastern/North African LGBTQ+ respondents, among other race identities
    • 18% of Asian/Pacific Islander LGBTQ+ respondents
    • 17% of white LGBTQ+ respondents
  • 36% of LGBTQ+ respondents reported that a close friend or family member has become very sick from Covid-19
  • 24% of LGBTQ+ respondents reported that Covid-19 has negatively impacted their financial well-being
  • LGBTQ+ people of color surveyed are more likely than white LGBTQ+ people to have experienced a negative financial impact during the pandemic:
    • 33% of Native American/Alaskan and Middle Eastern/North African LGBTQ+ adults, among other race identities
    • 26% of Asian/Pacific Islander LGBTQ+ adults
    • 26% of Latinx LGBTQ+ adults
    • 25% of Black LGBTQ+ adults
    • 22% of white LGBTQ+ adults

“There are many reasons why LGBTQ+ vaccination rates may be higher than the general population, including higher percentages of the LGBTQ+ community being liberal, living in blue states, and living in urban areas,” said CMI Senior Director of Research, David Paisley. “While participants had strong education levels, those with no more than a high school diploma still had an 87% vaccination rate. We also see that Covid isolation significantly impacted LGBTQ+ people, which may have motivated quick vaccination to reenter the community.”

The new data build on the HRC Foundation’s previously released reports, including the most recent report, “Covid-19 and the LGBTQ Community: Vaccinations and the Economic Toll of the Pandemic,” which was released as a part of the HRC Foundation’s vaccine public education campaign: “For Ourselves, For Each Other: Getting to the Other Side of the Pandemic.” The HRC Foundation has also partnered with the Black Trans Advocacy Coalition on a resource, “Finding Financial Stability During Turbulent Times,” with steps and advice for those who may be struggling to make ends meet during these difficult times. Read more about the HRC Foundation’s efforts during Covid-19 here.

The Rockefeller Foundation is supporting the Human Rights Campaign Foundation on a number of Covid-19-related projects to support research and community education to reach LGBTQ communities of color during this crisis through The Rockefeller Foundation’s Equity-First Vaccination Initiative. Learn more here.

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Cornell University study on impact of discrimination on LGBTQ of color

Around 25% of LGBTQ youth have attempted suicide, but the rates are starkly higher for LGBTQ youth of color than their white counterparts

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McGraw Tower, Cornell University (Photo Credit: Cornell University)

ITHACA, NY. – Cornell University’s What We Know Project in conjunction with a coalition of leading LGBTQ rights groups last month published a comprehensive curation of data on studies that chart the intersection of anti-LGBTQ and racial discrimination.

The findings found that discrimination inflicts profoundly greater harm on LGBTQ people of color in a wide range of areas, including grossly disproportionate rates of: experiencing discrimination over  the past year, poorer mental and physical health, greater economic insecurity, and attempts to die by suicide.

 In addition, LGBTQ people of color are more likely than white LGBTQ people to live in states without protections  against discrimination and that state anti-LGBTQ laws harm LGBTQ people. 

“This research brief makes clear the tangible harms that discrimination inflicts on LGBTQ people of color,  and the urgent need for public policy that reflects what the research tells us about how we can reduce those  harms,” said Dr. Nathaniel Frank, the study’s author.

Highlights of the research brief’s findings include

LGBTQ people are more likely than non-LGBTQ people to be people of color, and Black LGBTQ  Americans are disproportionately likely to live in states without protections against discrimination. For  example, 42% of LGBT people are people of color compared to 32% of non-LGBT people and the majority of  Black LGBT Americans live in the South (51.4%, more than twice the share of any other region), where most  states lack anti-discrimination protections. 

LGBTQ people of color face higher odds of discrimination than both non-LGBTQ individuals and LGBTQ  white people. For example, LGBTQ people of color are more than twice as likely to experience anti-LGBTQ  discrimination (slurs or other verbal abuse) when applying for jobs than white LGBTQ individuals (32% vs.  13%). LGBTQ people of color are more than twice as likely as white LGBTQ people to experience anti-LGBTQ  discrimination when interacting with the police (24% vs. 11%). 

Black LGBT Americans are more likely to experience economic insecurity than Black non-LGBT Americans.  For example, the majority of Black LGBT people (56%) live in low-income households (below 200% of the  federal poverty level) compared to 49% of Black non-LGBT Americans, and Black LGBT adults are also more  likely to experience food insecurity than Black non-LGBT adults (37% compared to 27%). 

Hundreds of studies conclude that experiencing anti-LGBTQ discrimination increases the risks of poor  mental and physical health, including depression, anxiety, suicidality, PTSD, substance use, and  psychological distress. 

LGBTQ people of color face disproportionate odds of suicidality, which is linked to discrimination. For  example, while 12% of white LGBTQ youth attempted suicide, the rate is 31% for LGBTQ Native/Indigenous  youth, 21% for LGBTQ Black youth, and 18% of LGBTQ Latinx youth.  

While supportive laws, family, and peers lower the risk of poor health outcomes for LGBTQ people of  color, anti-LGBTQ state laws inflict tangible harm on sexual minority populations. For example, states  with “denial of service” laws that give license to discriminate against LGBT residents between 2014 and  2016 were linked with a 46% increase in LGBT mental distress. Black LGBTQ youth who reported high levels  of support from at least one person, or who had access to an LGBTQ-affirming space, reported attempting  suicide at lower rates than those who lacked such support (16% vs. 24%). 

Supportive laws, family, and peers lower the risk of poor health outcomes  for LGBTQ people of color. 

• Suicide attempts by LGBT youth dropped by 7 percent in states that legalized same-sex marriage.22 

• The corollary is that anti-LGBTQ state laws inflict tangible harm on sexual minority populations. States with “denial of service” laws that give license to discriminate against LGBT residents were linked with a 46% increase in LGBT mental distress.23 

• Black LGBTQ youth who reported high levels of support from at least one person, or who had access to an LGBTQ-affirming space, reported attempting suicide at lower rates than those who lacked such support (16% vs. 24%). Those with high levels of family support had rates of past-year attempted suicide nearly one third as high as those who lacked such support (22% vs. 8%).24 

• Protective measures that have been found to help reduce anxiety, depression, and suicidality among LGBTQ youth include: Establishing inclusive practices and anti-discrimination policies; peer, community, and family support, including dedicated school groups; access to affirmative mental health and social services; societal confrontation of attitudes and norms that exacerbate minority stress; and practitioner training and interventions designed to disrupt negative coping responses and build resilience.

Experiencing discrimination is associated with greater odds of harm to  psychological and economic well-being, which is reflected in data on  disparities for LGBTQ people of color. 

• Hundreds of studies conclude that experiencing anti-LGBTQ discrimination increases the risks of  poor mental and physical health, including depression, anxiety, suicidality, PTSD, substance use,  and psychological distress. 

• LGBT people of color have work-place experiences that are more negative than those of white  LGBT employees, reporting that their success and work-life balance are fostered less extensively,  they have less transparent evaluations, and they are respected less by supervisors. 

• Among LGBTQ people surveyed, 51% of Black respondents say discrimination harms their  ability to be hired, compared with 33% of white respondents; 41% say it has an impact on  their ability to retain employment, compared with 31% of white respondents; 77% of Black  respondents report that discrimination impacts their psychological well-being, a rate nearly 50%  higher than the total LGBTQ survey population. 

• While racial discrimination on its own is not associated with mental health disorders, the  combination of racial discrimination with gender and/or sexual orientation discrimination is  significantly associated with increased odds of a past-year mental health disorder.

LGBTQ people of color face disproportionate odds of suicidality, which is  linked to discrimination.  

• Around 25% of LGBTQ youth of all races have attempted suicide, but the rates are starkly  higher for LGBTQ youth of color than their white counterparts: While 12% of white LGBTQ  youth have attempted suicide, the rate is 31% for LGBTQ Native/Indigenous youth, 21% for  LGBTQ Black youth, and 18% for LGBTQ Latinx youth. 

• In a 95%-non-white LGBT sample, those who report experiencing anti-LGBT victimization (such  as bullying and harassment) are 2.5 times more likely to report a past-year suicide attempt  compared to those who do not report victimization. 

• Black LGBTQ youth who experience anti-LGBTQ discrimination face twice the rate of past year suicide attempts compared to youth who do not (27% vs. 12%). Black LGBTQ youth who  experience race-based discrimination also face higher odds of attempting suicide than those  who do not (20% vs. 14%).

• Black LGB adults are over 40% more likely to have made a serious suicide attempt in their  lifetime than white LGB adults. 

• Latinx and Native American/Pacific Islander LGBT youth are 50% more likely to attempt suicide  than white LGBT youth. Latinx LGBT girls are nearly twice as likely to attempt suicide than  white LGBT youth.

• LGBTQ students who experience discrimination “based on multiple social identities” report more  use of deliberate self-harm compared to LGBTQ students who experience racial discrimination  alone or who do not experience significant discrimination of any kind.

Reflecting on the study’s findings, key executives from participating LGBTQ Advocacy groups weighed in:

“These painful figures highlight an indisputable link between discrimination, economic security,   mental and physical health. People with multiple stigmatized, marginalized social and political identities, particularly Black LGBTQ+/Same Gender Loving people, bear a disproportionate amount  of the weight illustrated by the data in this study. Statutory equality for LGBTQ+ people nationwide is a necessary foundation to remove the gaps in existing civil rights laws if we are to ever live up to  our country’s founding promises of life, liberty, and the pursuit of happiness for all,”  said David Johns, Executive Director, National Black Justice Coalition.

The majority of Black LGBTQ people live in the South, with nearly half (44%) of all Black women couples raising children. Even today, most of these states still do not protect LGBTQ people from discrimination and have overtly discriminatory laws on their books. It is no wonder the disparities are so profound and it is a testament to the strength and resilience of our people that they are doing  as well as they are. For our community and for our children it’s time for federal action!” said Kierra Johnson, Executive Director, National LGBTQ Task Force.

“This important brief only further solidifies what we have known for a very long time—the combination of racism and anti-LGBTQ discrimination has serious and long-lasting effects for the health and well-being of LGBTQ people of color. This research highlights why federal non-discrimination protections are overdue and vital to protecting the most some of the most underrepresented and vulnerable members of our community. Federal anti-discrimination protections are absolutely necessary in protecting and supporting all LGBTQ people, and this is especially true for LGBTQ people of color,” said Imani Rupert-Gordon, Executive Director, National Center for Lesbian Rights.

“Study after study shows that nondiscrimination protections improve economic opportunities, public  safety, and physical and mental well-being of LGBTQ people. It is well past time for the essential protections available only in some of our states and cities to be extended to all LGBTQ Americans, especially LGBTQ people of color, who are disproportionately burdened by the lack of protections, ” said Kasey Suffredini, CEO and National Campaign Director, Freedom for All Americans.

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