ADAP Tragedy in South Carolina:
Three Die While on Waiting List
South Carolina’s Health Department confirmed that three people with HIV/AIDS died while on a waiting list for the State AIDS Drug Assistance Program (ADAP). Currently almost 300 ADAP-qualified patients are on the South Carolina waiting list for HIV therapy.
“It’s like standing on a track watching the train coming at you, but you can’t move,” said Kathie Hiers, Chief Executive Officer of AIDS Alabama and a member of a group of advocates, legislators, and public health officials who met in South Carolina earlier this week. “The ADAP waiting list in South Carolina keeps getting longer; they expect it to be about 350 people by the end of the year. The State only provides $500,000 for their ADAP program, and federal funding has been essentially flat for the last four years. Additionally, the federal Ryan White funding short-changes states like South Carolina that don’t have concentrated case counts in a major urban area. In a poor state like this one, it’s inevitable that these tragedies will continue to occur, simply due to a lack of resources.”
South Carolina’s ADAP program currently serves about 1,800 clients. The participants are 67% African-American and 85% earn less than 200% of the federal poverty level (approximately $19,000 a year).
“I am saddened by this terrible news,” stated Congresswoman Donna Christensen MD, Chair of the Congressional Black Caucus Health Braintrust. “We must do a better job of raising awareness among and achieving more action from federal legislators to address the funding crisis for ADAP or we are likely to see even more people pass away – as they did a few years ago in Kentucky and West Virginia – while waiting for ADAP access to today’s successful HIV treatments.”
“We have been asking for $197 million in additional federal funding for next year’s ADAP budget. This would be enough to fund a year’s treatment for about 16,607 new ADAP clients in all States & Territories,” states Bill Arnold, Director of the Title II Community AIDS National Network. “At this point, however, ADAP could even be flat funded in FY 2007. If that is the case, we must expect more awful news like this in the coming months. ADAP is entering month number 8 of its inadequate FY 06 federal funding.
"Many states already have ADAP waiting lists or have announced the need for other program reductions in the coming months. The handwriting is on the wall,” elaborates Arnold. “Communities in South Carolina are just the first – and not the last, if resources are not quickly found – to have to deal with the human tragedy issues of inadequate domestic ADAP & HIV/AIDS resources."
“The saddest part of this,” stated US Representative Maurice Hinchey, “is that everyone in Congress is well aware that these drugs save lives. It isn’t ignorance; instead it’s a dangerous incapacity in Congress to be able to prioritize saving human lives. The New York House delegation –Democrats and Republicans - asked for $105 Million in ADAP emergency funding six months ago. Congress knows the ADAP need, they just haven’t acted on the obvious. Thus, thousands of local communities dealing with HIV/AIDS are left holding the bag.”
“The ADAP waiting lists are the tip of the iceberg. There are thousands with people with HIV who are not being treated in America that aren’t even on waiting lists. This is unacceptable when the federal government is spending billions of dollars every year on HIV/AIDS. Congress must provide the necessary funding to care for these and other Americans who lack proper health care in a fiscally responsible manner. This requires making tough decisions such as abandoning the billions of dollars in ‘pork’ projects and earmarks contained in the appropriations bills we will vote on later this month in order to provide treatment that could literally be the difference between life and death for thousands of our fellow Americans,” says United States Senator Tom Coburn, M.D.
“As this painful story unfolds in South Carolina the local coalition – The South Carolina HIV/AIDS Care Crisis Task Force – of local HIV/AIDS stakeholders devoted to finding a solution at the grass roots level deserves the support of everyone, everywhere, in the United States who is committed to fighting the battle against AIDS here in the United States” said Bill Arnold of TII CANN. “Despite this tragedy in South Carolina, we can take solace in the fact that people are out there, working hard to get the resources to prevent these tragedies from happening again – anywhere in America.”
* Source: The Title II Community AIDS National Network, 11/4/06
Study: New HIV Patients Today Can Expect to Live 24 Years
An American found to have the AIDS virus can expect to live for about 24 years on average, and the cost of health care over those two-plus decades is more than $600,000, new research indicates.
Both life expectancy and the cost of care have risen from earlier estimates, mainly because of expensive and effective drug therapies, said Bruce Schackman, the study's lead author.
The research found that the average annual cost of care is about $25,200 -- nearly 40 percent higher than a commonly cited estimate from the late 1990s.
The new research also updates other studies from the 1990s, when life expectancy for HIV-infected people was closer to 10 years.
The study could influence how much state and federal governments appropriate for HIV and AIDS care and prevention in the future, some HIV policy experts said.
"They're going to have to take into account medical advances that have extended people's lives," agreed Schackman, assistant professor of public health at New York's Weill Cornell Medical College.
The study appears in the November edition of the peer-reviewed journal, Medical Care.
A 1993 estimate of life expectancy for a symptomless person infected with HIV was less than seven years.
A CHRONIC DISEASE
But since the mid-1990s, about two dozen HIV-fighting antiretroviral drugs have come onto the market that have essentially turned HIV from a death sentence into a chronic disease.
Physicians now understand life expectancy after HIV diagnosis to be two decades or more, and the new study supports that belief.
"It's nice to see that in writing," said Dr. Carlos del Rio, co-director of Emory University's Center for AIDS Research.
The researchers drew most of their data from 18 medical practices across the United States that provide care for 14,000 patients. The researchers looked at the records of about 7,000 of those patients.
They used a computer simulation model to project HIV medical care costs, and concluded the average lifetime cost of HIV care is $618,000 per person.
That figure is roughly equivalent to lifetime cost estimates for heart disease and some other chronic conditions in women, who incur more costs than men because they live longer, the researchers said.
The researchers estimated the monthly cost of care at $2,100, with about two-thirds of that spent on medications. That equates to $25,200 a year. In 1998, the average annual cost was $18,300, according to an older study.
The difference is not just inflation -- the costs of improved and more expensive HIV medications account for much of the difference, Schackman said.
For example, a typical regimen for an HIV patient beginning treatment includes the drug efavirenz, which blocks a certain protein that HIV needs to make copies of itself. It also includes tenofovir and emtricitabine or some similar drug which helps keep the AIDS virus from reproducing.
The monthly cost just for that regimen was about $1,140 in 2004, Schackman and the other researchers said. If that treatment does not work or stops working, the patient is switched to more expensive arrays of drugs.
In their cost estimates, the researchers aimed high, basing their numbers on the best available drugs and the best standards of care. But that's not always what's provided, some HIV policy experts noted.
For example, a 2003 federal study concluded that only 55 percent of HIV patients who should have been on virus-fighting medications were actually getting them.
"This is really an optimistic scenario" in the study, and the true cost is probably lower, said Jennifer Kates, director of HIV policy for the Kaiser Family Foundation.
However, she added that since people living with HIV should be getting optimal care from doctors experienced in treating HIV, the study's expectations are reasonable, she added.
* Source: Associated Press, 11/10/06
U.S. Experiment Uses AIDS to Fight AIDS
An AIDS virus genetically engineered to fight other AIDS viruses worked better than expected, suppressing the virus and renewing the immune systems of a few patients, researchers reported.
The study involved just five people, and such an approach needs years more study, they cautioned -- but the surprising results offer new hope both for the field of gene therapy and for treating the fatal and incurable AIDS virus.
"The goal of this phase I trial was safety and feasibility and the results established that," said Dr. Carl June of the University of Pennsylvania School of Medicine, who led the study.
"But the results also hint at something much more," he added.
"It seemed to have a vaccine-like effect in that the immune system was better in most of the patients than when they enrolled. We are trying to study the mechanism."
The AIDS virus infects close to 40 million people worldwide and has killed 25 million. A cocktail of drugs can help control infection, but there is no cure and no vaccine.
The drugs cause sometimes severe side-effects in some patients and the virus can evolve resistance, so that patients have to move to new drug combinations.
Gene therapy is a promising but troubled field of research based on the premise that altering genes can cure disease. It has cured only a few patients, and some have developed leukemia as a consequence. One gene therapy volunteer died in 1999.
June's team tried a new gene therapy approach, first crippling the HIV virus, they report in this week's issue of the Proceedings of the National Academy of Sciences. "The virus is gutted so that it only has half the size of the original or pathogenic virus," June said in a telephone interview.
The so-called envelope gene remains, and is reversed, a manipulation called antisense.
The researchers then recruited five patients with HIV who were beginning to fail treatment, meaning the drugs no longer worked and the virus was beginning to damage their immune systems.
June's team removed the immune cells, CD4 T-cells, which are attacked by HIV. The researchers infected the CD4 cells in the lab with their newly engineered antisense HIV virus, then infused them back onto the patients.
When HIV or any other virus infects a cell, it injects its own genetic material into the cell.
The cell is turned into a virus factory, sometimes pumping out thousands of copies of a virus before it explodes.
After the new antisense virus was infused, newly infected cells pumped out defective virus, June said.
"The virus particles that are released are, like, sterile. They are nonpathogenic," June said.
This test was meant only to show that the approach was safe, and three years later, none of the patients show any ill effects.
The treatment appears to have helped restore the immune systems of four of the five patients, and the virus remains partly suppressed.
"We put back more (CD4 cells) than we took out. We don't know if that is why their immune system gets better, because there are more soldiers, or whether it got better because of better antiviral effects," June said.
The therapy is being developed by Gaithersburg, Maryland-based VIRxSYS Corp. and the studies are partly paid for by the National Institute of Allergy and Infectious Diseases.
Phase II trials are underway in HIV patients who have disease well-controlled by drugs. June said it is not yet clear if the treatment could work only in infected patients, or might even be used as a preventive vaccine some day.
* Source: Reuters Health, 11/7/06
The Economic Cost of HIV/AIDS is Greater Than Previously Estimated, Particularly for Minorities
The economic cost of HIV/AIDS is far greater than previously estimated, and the cost is even higher for minorities, according to a new study that estimated the direct and indirect costs of the disease.
The total lifetime cost of illness for Americans newly diagnosed with HIV in 2002 is approximately $36.4 billion, of which more than 80% is related to productivity losses, a cost that most previous studies have omitted. The study also reveals that while the direct costs of antiretroviral therapy may be high, these costs are eventually offset by extended productivity. The research shows that differences in medical care result in dissimilar costs - both direct and indirect - among different racial and ethnic groups.
The study is published in the Journal of Acquired Immune Deficiency Syndromes (JAIDS). It is the result of collaboration among researchers at the Centers for Disease Control and Prevention (CDC), the Emory University Center for AIDS Research, and the Andrew Young School of Policy Studies at Georgia State University.
An estimated 40,000 people in the United States become infected with HIV each year. While researchers have previously estimated the economic costs of HIV/AIDS, they have focused primarily on the direct medical expenses of treating the disease. The results up to now have given an incomplete picture of the disease's economic consequences, according to Angela Blair Hutchinson, PhD, MPH, a health economist at the CDC and lead author of the paper.
"We wanted to assess the economic burden of an HIV infection in the U.S.," said Dr. Hutchinson, "by examining the impact of stage of disease at diagnosis and access to treatment on the cost of HIV infection and how this might differ by race/ethnicity."
The research shows that differences in medical care result in dissimilar costs - both direct and indirect - for various racial/ethnic groups. "We found that direct costs were lower and productivity losses were higher for minorities," said Dr. Hutchinson.
Specifically, minorities incur fewer direct medical costs than whites ($160,400 for blacks on average, compared with $180,900 for whites), but suffer greater financial damage from lost productivity ($838,000 for Hispanics and $766,800 for blacks on average, compared with $661,100 for whites).
The differences, according to Hutchinson, reflect disparities in treatment. Minorities are, on average, diagnosed at later stages of the disease than whites. In addition, whites with HIV/AIDS are more likely to receive antiretroviral therapy (ART).
As Dr. Hutchinson notes, "ART is not used universally because it is expensive. Many patients with HIV/AIDS do not have health insurance and/or do not have access to ART."
Though ART is costly, it has proven very effective at extending lives, and productivity. The researchers found that ART patients have direct medical costs averaging $230,044, with a projected life expectancy of 24.4 years. Patients not receiving ART have direct medical costs of approximately $114,938, with a projected life expectancy of 12.4 years.
The additional years of productivity after being treated with ART mean that the more expensive treatment is actually more cost effective in the long run. "Universal access to treatment would be cost saving," said Dr. Paul Farnham, a co-author and economist from the Andrew Young School of Policy Studies at Georgia State University, "because it decreases the years of life lost from the illness, and thus lowers productivity losses more than it increases the direct medical costs."
Besides recommending such universal access, the paper also emphasizes the importance of diagnosing the disease early. As Dr. Hutchinson explained, in order to narrow the treatment divide and expense gap among racial/ethnic groups with HIV/AIDS, "There needs to be a focus on earlier diagnosis, particularly for minorities."
* Source: AIDS Weekly, 10/16/06
HIV Prognosis Good for Many Pregnant Women
Provided they have access to highly active antiretroviral therapy (HAART), a potent combination of anti-HIV drugs, pregnant women infected with HIV generally fare well for several years after giving birth, according to a report in the Journal of Acquired Immune Deficiency Syndromes.
"The outcome of our patient (group), which reflects evolving practice in the general clinical setting, provides (doctors) with evidence of healthy maternal survival after pregnancy for up to 6 years," the investigators write.
Many earlier studies have focused on pregnancy outcomes in HIV-infected women, the authors explain, but few have examined longer-term outcomes after delivery.
Dr. Fabiola Martin from St. Mary's NHS Trust, London, and colleagues present results from an ongoing study of the clinical outcome and response to therapy postpartum in 311 HIV-infected pregnant women who gave birth to 343 infants.
Depending on their immune status, women received AZT (zidovudine) therapy during pregnancy, HAART during pregnancy only, or HAART during and after pregnancy. The average follow-up period was 33 months.
Overall, the team reports, the women experienced improvements in their immune system and a drop in HIV levels and 98 percent of all mothers survived through the last follow-up visit without progression to AIDS.
Three of 85 women who took zidovudine monotherapy during pregnancy, 2 of 154 who continued HAART postpartum, and 1 of 71 who received short-term HAART until delivery had disease progression.
One mother died from drug toxicity, and six developed an AIDS-defining infection, the report indicates, with no significant difference between the three treatment groups.
Most women in all three groups who were taking HAART at last follow-up had an adequate immune status and HIV was undetectable in the blood, the researchers note.
"These data can reinforce the growing confidence of women with HIV infection, who wish to start or extend their family," the researchers conclude. A frequency of mother-to-child transmission of HIV of less than 1 percent is achievable and, with access to HAART, progression to AIDS is uncommon, the authors conclude.
* Source: Reuters Health, 10/30/06
Anal HPV More Prevalent Than Cervical HPV in HIV-Positive Women
Research in human papilloma virus (HPV) in women has mostly focused on cervical HPV; not much is known about anal HPV infection in women. A team of American researchers therefore investigated the prevalence (frequency of occurrence) and diversity (number of different viral strains) of HPV in HIV-positive women, finding that the virus is actually more prevalent and more diverse anally than cervically. The research was presented to the recent meeting of the Infectious Diseases Society of America in Toronto.
HPV is the name for a family of sexually transmitted viruses which includes dozens of different subtypes. Some of these subtypes cause genital and anal warts; others can lead to cervical cancer in women, or anal cancer in people of either sex. People with damaged immune systems are at increased risk of HPV-related cancers.
The SUN Study (Study to Understand the Natural History of HIV/AIDS in the Era of Effective Therapy) is a five-year, prospective observational study that aims to enroll 1000 HIV-positive participants through seven U.S. centres. As part of the SUN study, 122 women provided information about sexual risk factors, and had cervical and anal swabs analysed for human papilloma virus. The women ranged between 21 and 64 years of age (average 40), were racially diverse, and had median CD4 cell counts of 419 cells/mm3 and viral load of 1.7 log10.
In all, 112 (92%) of the women were found to have HPV. All strains of HPV were more commonly found by anal than by cervical swab (92% vs. 86%; high-risk types for cancer 84% vs. 64%; low-risk types 74% vs. 59%). A larger number of different HPV subtypes were also found in the anus, as compared to the cervix: this was true at all CD4 count levels, and for high-risk and low-risk subtypes for cancer. The actual subtypes themselves varied: of the types considered high-risk for cancer, types 16, 35, 53, 58 and 59 were most prevalent in the cervix; types 16, 18, 31, 45, 53 and 58 were most prevalent in the anus. (Viral subtypes 16 and 18 are considered the most ‘oncogenic’, or likely to cause cancer: currently available ‘quadrivalent’ HPV vaccines are active against viral subtypes 6, 11, 16 and 18.)
Since the group did not include many women with very low CD4 cell counts, the researchers could not really gauge CD4 count as a risk factor. They did, however, find that having had anal sex did not appear to be a risk factor for anal HPV. They concluded that “there is a need to further investigate the clinical significance of anal HPV infection in women.” Also, since currently available HPV vaccines are based on a few specific high-risk subtypes, they state that “HPV vaccine efficacy needs to be evaluated in HIV-positive women.”
* Source: aidsmap.com, 10/19/06
Public Health And Not Civil Liberties Should Now Guide HIV Testing Policy, Says JAMA Commentary
The interests of communities most affected by HIV will be best served by shifting from a civil liberties approach to HIV testing to a public health approach, according to a commentary in the October 25th edition of the Journal of the American Medical Association. The author, an expert in law and public health with positions at two of America’s leading universities, writes that advances in HIV therapy combined with the individual and public health benefits of early HIV diagnosis justify the adoption of a new, “opt-out” approach to HIV testing.
In September this year, the US Centers for Disease Control issued revised guidance on HIV testing in healthcare settings. These guidelines recommend HIV screening for all individuals aged between 13 and 64 as part of their routine medical care, irrespective of lifestyle factors, perceived risk, or local HIV prevalence rates. HIV tests can now be performed in both public and private healthcare facilities unless an individual explicitly opts-out. Furthermore, there is no requirement for patients to receive counselling before an HIV test is performed. This marks a departure from a decades-old approach to HIV testing that involved individuals receiving counselling before an HIV test, which could only be performed once written, informed consent was provided.
The civil rights approach to HIV testing originated in the early 1980s when, the author argues, the medical and social context for HIV were significantly different to those that exist today. There were few benefits for the individual from HIV testing at this time, as there were very limited treatment options and these had only a marginal impact on prognosis. HIV testing could also involve the risk of stigma and discrimination. The author argues that these factors resulted in a “civil rights” approach to HIV testing being adopted, designed to “safeguard personal autonomy and privacy and to proscribe discrimination.”
This approach my no longer be justified. The author stresses that potent anti-HIV therapy has both individual and public health benefits and justifies the adoption of a new, public health approach to HIV testing. Appropriate anti-HIV treatment can mean a longer, healthier life for HIV-positive individuals, and as it lowers viral load, can also reduce the infectiousness of an individual receiving therapy. In addition, the counselling that accompanies HIV testing has been shown to lead to a significant reduction in HIV risk-behaviours. The cost-effectiveness of HIV testing has been demonstrated, even in low prevalence areas.
Although the author concedes that HIV is still a stigmatised condition and that HIV-positive individuals continue to experience discrimination, he suggests that these do not occur to the same degree as in the early years of the HIV pandemic. He also argues that privacy and anti-discrimination laws now provide important legal protections for HIV-positive individuals at both a federal and state level. The author therefore believes, “in th[is] new milieu of personal therapeutic benefit, societal benefit, and fewer social risks, a public health strategy for the HIV epidemic seems warranted.”
Epidemiology is also used by the author to support the argument that a shift from a civil rights to public health approach to HIV testing is justified. He emphasises that as many as 250,000 Americans are living with undiagnosed HIV infection and that late diagnosis of HIV is widespread, and that this represents “lost opportunities for linking people with medical care, reducing infectiousness, and encouraging safer behaviour.” Universal testing would also be less stigmatising “because it does not single out vulnerable populations and applies equally to all socio-economic classes and racial groups.”
But barriers exist to the CDC’s recommendation, particularly laws in the individual US states regarding testing.
Opt-out HIV testing is part of a wider move by the CDC towards a public health approach to HIV and the author cites the CDC’s support for names-based HIV reporting and universal screening of pregnant women as evidence of this. He notes that new guidance on partner notification is due to be issued by the CDC in 2007, and he implies that this will give primacy to public health over civil rights.
Despite his overall support for opt-out testing, the author does have some reservations about CDC’s guidelines, writing that they may allow HIV testing without consent, and do not guarantee access to anti-HIV therapy for individuals who test HIV-positive. Furthermore, even in the era of potent and effective HIV therapy, the author acknowledges that receiving an HIV diagnosis can be traumatic and that patients need support after being told that they have HIV, support which the CDC guidance does not mandate.
“For vulnerable communities,” the author concludes, “it may not be enough to focus absolutely on their rights, but also on their health and collective well-being. That may be the message for the evolution toward a public health model for combating HIV/AIDS.”
* Source: aidsmap.com, 10/25/06
New Study Shows More Convenient HIV Treatment As Effective As More Complex Regimens
Regimens to treat HIV infection that are based on a non-nucleoside reverse transcriptase inhibitor (NNRTI) are at least as effective as treatment with a protease inhibitor but require patients to take fewer pills each day, according to a new study funded in part by HHS' Agency for Healthcare Research and Quality.
The study, published in the October 28 online issue of the Lancet, found that disease progression was similar for both regimens, but NNRTI-based treatment appeared more effective at decreasing the amount of virus in the blood. The number of patients who stopped treatment because of adverse events was similar for both medications.
The new study is the first to review all published research that directly compares the two classes of antiretroviral drugs used in highly active antiretroviral therapy (HAART). NNRTI-based regimens were found to be up to 60 percent more likely to suppress the amount of virus in patients' blood than protease inhibitor-based regimens. The percentage of patients who died or experienced disease progression were similar between the two treatments, and the number of patients who stopped taking the medications because of side effects or adverse events was also similar.
While some protease inhibitors require four doses each day, one NNRTI, efavirenz, can be taken in one daily dose. This convenience could increase the likelihood that patients will adhere to their HIV regimens.
Publication of the study follows the July 12 approval by the Food and Drug Administration of the first once-a-day medication to treat HIV. The drug contains emtricitabine and tenofovir, two nucleoside reverse transcriptase inhibitors, plus efavirenz. The components of the drug were previously available, but it is anticipated that the new combined formulation will simplify treatment and improve compliance.
"A simpler regimen offers the potential of improved adherence and better patient outcomes. Combined with the approval of new dosage formulations, this information could improve the management of patients in this country and in regions of the world where access to medical care and treatment compliance can be challenging," said AHRQ Director Carolyn M. Clancy, M.D. “These findings highlight the need for additional research that evaluates the extent to which improvements in markers of a disease, such a viral suppression, lead to improved clinical outcomes."
The Centers for Disease Control and Prevention estimates that between 1 million and 1.2 million people in the United States are living with HIV, and at least 40,000 new infections occur each year. Worldwide, approximately 40 million individuals are infected with the virus.
Researchers, led by Roger Chou, M.D., at Oregon Health & Science University in Portland, completed an analysis of 26 trials, including 12 head-to-head trials comparing NNRTI-based regimens with protease inhibitor-based regimens. Fourteen other trials compared two-drug regimens with either NNRTI-based or protease inhibitor-based, triple-drug regimens. Among 3,337 patients analyzed in the head-to-head trials, NNRTI-based regimens were better than protease inhibitor-based regimens by 20 percent to 60 percent in their ability to achieve viral suppression.
Dramatic decreases in the rate of HIV-related illnesses and deaths have occurred since the introduction of HAART therapy in which three or more antiretroviral agents are used. However, until now, comparisons of head-to-head trials were not available to support selection of a protease inhibitor or an NNRTI as part of that combination therapy. Researchers concluded that earlier analyses may be unreliable because their results differed dramatically from the analysis of head-to-head trials, even after excluding patients who had previously received HIV therapy and those who had received older NNRTIs, such as delaviridine, that are now used infrequently because they are less effective than newer NNRTIs. Prior antiretroviral treatment can cause drug resistance and treatment failure.
The study was completed as followup to an evidence review prepared by Dr. Chou and a team of researchers at AHRQ's Oregon Evidence-based Practice Center in Portland. The EPCs were established to synthesize existing scientific literature about important health care topics and promote evidence-based practice and decisionmaking.
* Source: Medical News Today, 10/28/06
Gay Latino Group Asked to Repay Federal Grants
The financial collapse of a prominent organization that aids gay Latinos has left federal officials scrambling to reclaim hundreds of thousands of dollars in allegedly misspent government money.
Once active in California, Florida and other states with large Latino populations, the National Latina/o Lesbian, Gay, Bisexual and Transgender Organization is mired in bankruptcy court. Its doors are shut and others are assuming its high-stakes health work while lawyers dissect a legacy of debt.
Uncle Sam, in particular, wants to reclaim more than $700,000 from the now-defunct organization that gay activists called LLEGO. It's likely, though, that the government will come up empty-handed.
"The (former) employees are the only ones who are going to get paid, because of the limited amount of money available," Jeffrey Sherman, attorney for the bankruptcy trustee, said. "If there's anything left, it will go for taxes."
Founded in 1987, the National Latina/o Lesbian, Gay, Bisexual and Transgender Organization relied on grants from groups such as the Los Angeles-based California Endowment, which provided $25,000 in 2003 for a Latino health summit. The federal Centers for Disease Control and Prevention gave the Washington-based organization more money for AIDS/HIV education, including a $1.15 million grant in 2004.
Lives are on the line with such work.
Although Latinos compose 14 percent of the U.S. population, they accounted for 20 percent of the AIDS cases diagnosed in 2004. The number of AIDS-related deaths in the U.S. Latino population rose by 7 percent from 2000 to 2004, according to the Kaiser Family Foundation. AIDS-related deaths in the non-Hispanic White population fell by 19 percent during the same period.
"I do think it's a population that has special needs," Charlotte Jenks, an activist for gays and lesbians in Fresno, Calif., said. "There are significant cultural differences, and if they are illegal, they're not going to want to seek services, obviously."
LLEGO once touted itself as the only national organization of its kind. But five months after it got the 2004 federal grant, LLEGO shut down. When auditors began probing, they found that the organization had incurred $703,181 in "unallowable costs" instead of the promised HIV/AIDS education efforts.
"LLEGO engaged in activities not covered by CDC's (rules), including lobbying, fund-raising and advocating on behalf of gay issues," concluded auditors with the U.S. Department of the Health and Human Services' office of inspector general. In 2003, for instance, the organization's leaders rallied in Tallahassee, Fla., to support adoption by same-sex couples. The same year, the organization's leaders rallied in Sacramento to support same-sex marriages. The organization further urged lawmakers to oppose a 2004 bill that would strip federal courts of the chance to hear challenges to the Defense of Marriage Act, which declares that states needn't recognize gay marriages performed in other states.
LLEGO closed in the summer of 2004 and subsequently filed for Chapter 7 bankruptcy protection. The case is still unfolding.
The group's former Executive Director Martin Ornelas-Quintero couldn't be reached to comment, although questions were left with his attorney.
* Source: Phoenix Arizona News, 10/8/06