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House members say AIDS drug program in crisis

Frank, Baldwin sign petition to Obama warning of AIDS deaths

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U.S. Reps. Barney Frank (D-Mass.) and Tammy Baldwin (D-Wis.) have joined 76 of their House colleagues to sign a petition to President Obama calling for $126 million in emergency funds for the federal AIDS Drug Assistance Program.

The petition, dated May 19, says the emergency supplemental funds are needed to reverse a growing trend among states to put in place waiting lists for the mostly uninsured patients that rely on ADAP to provide their life-saving AIDS drugs.

“It’s abundantly clear that without emergency action, the ability for ADAP programs to provide a safety net for low income and underinsured Americans with HIV/AIDS will be seriously damaged,” says the petition.

Carl Schmid, deputy executive director of the AIDS Institute, a national AIDS advocacy group, said a coalition of AIDS groups has urged the White House and Congress to boost the federal funding allocation for ADAP for more than a year.

“The ADAP problem is getting worse and worse,” he said. “We’re very concerned that the administration and Democratic leaders in Congress are not responding.”

Schmid and officials with other AIDS groups have said the health care reform legislation that Congress approved earlier this year is expected to lessen the need for ADAP. The reform measure will provide health insurance coverage for millions of Americans, including people with HIV and AIDS, who currently can’t afford it.

The new insurance system will include prescription drug plans that cover the expensive anti-retroviral drugs that have been credited with preventing people with HIV from progressing to full blown AIDS.

But AIDS group officials note that the new program won’t go into full effect until 2014, and more than 1,000 people with HIV who can’t afford the drugs are on ADAP waiting lists in at least 11 states.

That number is expected to increase significantly if Congress doesn’t approve an emergency supplemental funding of $126 million for ADAP this year and another increase of $370 million for fiscal year 2011, according to officials with state AIDS offices.

Congress created ADAP in 1987 as part of the sweeping Ryan White AIDS Care Act. It was intended to provide free or low-cost drugs to people with HIV who have limited financial resources and lack health insurance.

The program is structured so that each state and U.S. territory operates an independent ADAP, with the option of supplementing the program with state funds. Most states have added differing amounts of their own funds to the program.

According to the National Alliance of State & Territorial AIDS Directors, Congress appropriated 72 percent of the total ADAP expenditures in 2000. But by 2009, the federal share of ADAP funding dropped to 51 percent, with state budgets and discounts offered by drug companies picking up the balance.

NASTAD said the decline in the federal share of the funding did not occur due to a reduction in federal funds; federal funds for the program continued to rise at a modest pace. The percentage of federal funds declined because the number of new people enrolling in state ADAP programs increased dramatically over the past decade, in part because the effectiveness of the drugs has kept more people with HIV alive.

Additionally, in recent years, the economic recession has resulted in the loss of jobs along with the loss of health insurance coverage for large numbers of Americans with HIV, AIDS group officials have said.

At the same time, the recession has resulted in a dramatic drop in tax revenue for states, forcing most states to put in place large budget cuts. The cuts have hit state health departments, including state funding for ADAP.

The federal government’s failure to increase its share of ADAP funding to cover the large increase in people with HIV enrolling in the program at the same time that states have slashed their ADAP budgets has been the catalyst for a spike in ADAP waiting lists in a growing number of states.

In one case, AIDS activists have said South Carolina sharply cut its ADAP budget, threatening to prevent hundreds of people with HIV in need of AIDS drugs from receiving them. The cuts could lead to the death of people with HIV who might otherwise remain healthy if they had access to the medication.

Earlier this year, a heated dispute surfaced between NASTAD and the AIDS Healthcare Foundation, a national AIDS advocacy group based in Los Angeles, over whether calls for Congress to appropriate more money for ADAP should be linked to demands that pharmaceutical companies provide greater discounts to ADAP for the purchase of expensive AIDS drugs.

Both groups favor an increase in federal funds for ADAP, and both have said they support efforts to negotiate greater price discounts from drug companies for state programs.

But unlike the AIDS Healthcare Foundation, NASTAD and its allies favor lobbying Congress for increased ADAP funds on a separate track from efforts to secure greater price reductions from the drug companies.

Julie Scofield, NASTAD’s executive director, has argued that a coalition of state programs and various AIDS advocacy groups have succeeded in securing significant drug discounts from major pharmaceutical companies.

In a statement sent by e-mail in March to more than 1,000 groups and activists, AIDS Healthcare Foundation officials said federal intervention alone is not sufficient to curtail the ever-accelerating cost of ADAP spending on drugs.

“The undeniable driver of costs in ADAPs is the costs of the medications that are purchased,” says the statement.

It noted California’s ADAP, in which spending for AIDS drugs increased by 165 percent since 2000, while the number of patients served increased by 49 percent.

“This is equivalent to a 77 percent increase in per patient cost of AIDS drugs,” says the statement. “Even with ‘price freezes’ and rebates, the costs of the pharmaceuticals will continue to rise to a level that will bankrupt states, and force major programmatic concessions in eligibility and formulary.”

Among other things, AIDS Healthcare Foundation proposed that for every dollar of federal funds allocated for ADAP, pharmaceutical firms should be required to “contribute two dollars in additional rebate or price cuts.”

As of earlier this week, neither Congress nor the White House had moved forward any of the proposals for supplementing the ADAP budget through a special, emergency funding allocation for fiscal year 2010.

Sens. Tom Coburn (R-Okla.) and Richard Burr (R-N.C.), however, introduced a bill last month calling for extracting the $126 million advocacy groups say is needed for ADAP this year from federal stimulus money approved under President Obama’s economic stimulus legislation.

The White House and Democratic leaders in Congress have yet to officially take a position on the Coburn-Burr bill, but Capitol Hill observers say they don’t expect the president or most Democrats in the House or Senate to support the measure.

The AIDS Healthcare Foundation has endorsed the bill.

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6 Comments

6 Comments

  1. Jim Driscoll

    June 4, 2010 at 1:32 am

    Since the Burr-Coburn bill does exactly what groups like NASTAD and Carl Schmid’s TAI have been lobbying for all this year, gives ADAP a $126M increase, why have these groups failed to endorse the bill? Disliking a bill’s sponsors is not a valid reason. If they simply refuse to support a Republican generated bill, let them ask Mrs. Pelosi and the 76 House members who have endorsed a $126M increase for ADAP to immediately introduce their own Democrat bill. The waiting lists are growing, each month new states, most recently Florida, initiate ADAP waiting lists, recently a waiting list patient died. Let’s not quibble about who gets credit for what while people with AIDS grow sick and die waiting for access to life saving medications.

  2. Wp

    June 4, 2010 at 9:35 am

    I live in Md.. Who should I call because I have friends who need this program to live..

  3. Fat Pat

    June 6, 2010 at 11:07 pm

    If gay men would just practice safe sex, the AIDS industry could be closed down.

    • Frankie James

      June 7, 2010 at 2:34 pm

      If FAT people would eat right…

      It is so sad when ignorant fools like this open up their mouths and stick in twinkies.

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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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