Also published on Bilerico.com
Today, amfAR grantee Dr. Timothy Henrich announced two HIV-positive patients who have undetectable levels of HIV after undergoing stem-cell transplants at the 7th annual International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention in Kuala Lumpur, Malaysia.
We’ve had some excellent news about the curing of HIV-infected people in the past year. But it comes at a price.
It’s important to note that the individuals involved received intensive care and went through extreme discomfort in order to eradicate the virus from their bodies. It’s not something that we’ll be able to replicate for the general population anytime soon.
And I think we need to remember that people are still dying of HIV-related causes every day- thousands of people. And new infections aren’t really slowing down- even in the First World where there is convenient access to safe sex supplies. There’s still a disconnect. There’s still ignorance and apathy out there.
It’s still good news however.
The patients had been on long-term antiretroviral therapy for HIV when they developed lymphoma. To treat the cancer, the patients underwent reduced intensity chemotherapy followed by stem-cell transplants. Since the transplants, Dr. Henrich has been unable to find any evidence of HIV infection.
Dr. Henrich was awarded a grant through the amfAR Research Consortium on HIV Eradication (ARCHE) after presenting preliminary findings on these patients at the International AIDS Conference last July. With support from amfAR, he conducted a clinical study in which his research team withdrew the patients’ antiretroviral therapy and performed several sophisticated assays looking for signs of viral rebound in blood and other tissues. One patient has been off treatment with no detectable virus for approximately 15 weeks, and the second patient for seven weeks, with similar results. However, it is too soon to draw any definitive long-term conclusions.
It is also unclear how long viral rebound might take in a patient whose viral reservoirs have been dramatically depleted, but not eradicated. According to amfAR/ARCHE grantee Dr.Robert Siciliano of Johns Hopkins University, it may take over a year. Previously a patient in a study by the National Institutes of Health had gone 50 days after treatment withdrawal without viral rebound. Dr. Henrich’s patients are at or beyond this threshold, and more definitive answers will emerge as these patients continue to be closely monitored.
“These findings clearly provide important new information that might well alter the current thinking about HIV and gene therapy,” said amfAR CEO Kevin Robert Frost. “While stem-cell transplantation is not a viable option for people with HIV on a broad scale because of its costs and complexity, these new cases could lead us to new approaches to treating, and ultimately even eradicating, HIV.”
The first person to be cured of HIV, Timothy Brown (“the Berlin patient”), also underwent a stem-cell transplant to treat his leukemia. These new cases differ significantly, however, in that the stem-cell donors lacked the genetic mutation (CCR5 delta32) that renders a person virtually resistant to HIV infection. Nor did Dr. Henrich’s patients undergo the intensive chemotherapy or total body irradiation that preceded Timothy Brown’s stem-cell transplant.
“Dr. Henrich is charting new territory in HIV eradication research,” said amfAR Vice President and Director of Research Dr. Rowena Johnston. “Whatever the outcome, we will have learned more about what it will take to cure HIV. We believe amfAR’s continued investments in HIV cure-based research are beginning to show real results and will ultimately lead us to a cure in our lifetime.”
I still can’t help but think we’ve not done our best in response to this epidemic- especially in the last decade. I wonder if, as a community, we settled for simply not dying as a substitute for true health.
If so, what does that say about our self-esteem, self-care and community spirit? Have we lost interest in each other beyond the obvious?
That’s a heavy price to pay.
- No Trace of HIV After Stem-Cell Transplants, Researchers Say (news.health.com)
- Two patients clear of HIV after stem-cell transplants (irishtimes.com)
- Stem-cell therapy wipes out HIV in two patients (thestar.com)
New Analysis of World’s Premier AIDS Conference Finds Poor Coverage of Populations Most-at-Risk for HIV
Hundreds of Organizations Worldwide Call on Conference Organizers to Increase Meaningful Coverage of Gay Men, Transgender People, People Who Inject Drugs, and Sex Workers
A new report produced by a coalition of global advocacy organizations shows that the International AIDS Conference (IAC) program continues to lack meaningful coverage of populations most-at-risk for HIV, including men who have sex with men (MSM), transgender people, people who inject drugs (PWID), and sex workers. Over 220 organizations from more than 70 countries around the world have called on the organizers of the IAC to take concrete measures to increase coverage of HIV-related issues concerning the health and human rights of these populations worldwide.
The report features a systematic quantitative audit and qualitative analysis of the topics and countries covered by abstracts on most-at-risk populations at the 2012 IAC, also known as AIDS 2012. These populations are also called “key populations,” because they are both key to the epidemic’s dynamics and key to the response. As an in-depth examination of research presented at the world’s premier AIDS conference, the report also offers a glimpse into the current state of research on these key populations globally.
The quantitative audit of the AIDS 2012 program showed that only 17% of all abstracts presented at the conference were exclusively focused on MSM, transgender people, PWID, or sex workers. Some key populations were better represented than others. The percent of all abstracts exclusively dedicated to each key population was 8% for MSM, less than 1% for transgender people, 5% for PWID, and 4% for sex workers.
The qualitative analysis of abstracts on these populations was even more revealing, indicating that more abstracts on key populations focused on individual risk factors (40%) than any other topic, including structural factors [e.g. policy, stigma, violence] (26%); primary prevention (19%); testing, care, and treatment (15%); and surveillance (10%). Only 29% of abstracts on key populations focused on describing interventions, while 71% described vulnerabilities without offering any detailed solutions.
“This meager level of coverage on issues concerning our communities at the International AIDS Conference is unacceptable,” said Dr. George Ayala, Executive Director of the Global Forum on MSM & HIV (MSMGF) and co-author of the report. “Not only was there a comparatively low number of abstracts on key populations at the conference, but the content of these abstracts was largely divorced from the most urgent needs of key populations as identified by members of the populations themselves.”
The report cites the body of abstracts at AIDS 2012 focused on MSM as an example of the gap between the kind of research prioritized by key population stakeholders and the kind of research ultimately presented at the conference. Ahead of AIDS 2012, the MSMGF conducted a global survey of nearly 300 MSM advocates and service providers around the world to identify the topics they felt would be most important to address at the conference. The top three themes were “Prevention,” “Stigma and Discrimination,” and “Law and Criminalization.” Of all abstracts presented at AIDS 2012, the percentage dedicated to these themes in relation to MSM was 1.6%, 0.5%, and 0.3%, respectively.
“After thirty years of AIDS, we know key populations are at much greater risk than the general population in nearly every country around the world,” said Allan Clear, Executive Director of the Harm Reduction Coalition and co-author of the report. “Our communities deserve proper attention, and mounting evidence argues that addressing HIV among key populations is central to ending the global AIDS crisis. It is time for the IAC and the broader AIDS response to start addressing HIV among key populations in a more equitable, more appropriate, and ultimately more effective way.”
In addition to examining the number and focus topics of abstracts on key populations, the report also assessed geographic coverage. Of all abstracts on key populations, nearly 40% focused on North America and Western Europe. A country-level analysis revealed that nearly two-thirds of all key population abstracts were concentrated in 10 countries alone. Of the remaining 79 countries represented in these abstracts, 32 had only 1 abstract on 1 key population. Numerous regions and countries with concentrated epidemics among key populations were either underrepresented or entirely absent.
“The poor coverage of topics concerning key populations, especially from lower-income countries, may reflect inequitable global funding for research on key populations as much as it reflects the IAC’s processes that reinforce these inequities,” said JoAnne Keatley, Director of the Center of Excellence for Transgender Health at the University of California, San Francisco and co-author of the report. “The IAC’s organizers must update the conference’s processes to ensure the event is as valuable as possible for addressing the urgent HIV epidemics among key populations. As the premier platform for sharing the latest research on HIV and AIDS, it must lead the global AIDS research field to do the same.”
“The IAC represents a unique and powerful opportunity to impact the global AIDS epidemic,” said Anastacia Ryan, Global Policy Officer on HIV and Sex Work at the Global Network of Sex Work Projects (NSWP). “The conference offers unparalleled potential to shape the industry’s discourse, funding priorities, and locus of scientific inquiry, giving key affected populations the recognition they deserve as partners in fighting the epidemic. By updating its processes to increase meaningful engagement with and coverage of key populations, the IAC will not only support the development of more effective strategies to address the needs of key populations, it will bring the global AIDS response closer to developing the comprehensive solutions we need to end the epidemic.”
The report concluded with a set of 5 recommendations for measures that can be taken by conference organizers to increase meaningful coverage of key populations at future IACs. The recommendations include conducting community consultations, issuing targeted calls for abstracts, and advocating with large funders and research institutions for more appropriate funding and support for research on key populations. A total of 221 organizations from 73 countries endorsed the recommendations for action.
The full report, entitled “Coverage of Key Populations at the 2012 International AIDS Conference,” is available online at http://www.msmgf.org/files/msmgf//Advocacy/AIDS2012_KeyPopulations.pdf The report was jointly produced by the Global Forum on MSM & HIV (MSMGF), Global Action for Trans* Equality (GATE) , the Center of Excellence for Transgender Health (CoE), the Harm Reduction Coalition, the International Network of People Who Use Drugs (INPUD), Different Avenues, and the Global Network of Sex Work Projects (NSWP).
The full list of recommendations and endorsements can be found online at http://www.msmgf.org/files/msmgf//Advocacy/Action_Alerts/AIDS2014_CCC_Signatures.pdf.
- Coverage of Key Populations at the 2012 International AIDS Conference (sexworkresearch.wordpress.com)
- Anti-AIDS programs ignore LGBTs in Africa (76crimes.com)
Butte AIDS Support Services holds their Third Annual Copper Cotillion to benefit those living with HIV in Southwest Montana. Check out their Facebook event page here.
The Transgender Law Center applauds the Presidential Advisory Council on HIV/AIDS (PACHA) for passing a groundbreaking resolution recommending ways to address the high rates of HIV/AIDS among transgender communities throughout the United States. Recently made public, the resolution was passed in February.
PACHA’s advice and recommendations are vitally important in assisting the White House to implement the National HIV/AIDS Strategy. This resolution is groundbreaking in nature, as it is the first time PACHA has issued a transgender-specific set of recommendations.
“We’re incredibly grateful to PACHA for passing such a strong and compelling resolution,” said Cecilia Chung, Senior Strategist. “These recommendations, if implemented, will meet some of the dire needs of our community, which include data collection, education, and culturally competent prevention and care for transgender people, as our community continues to face extreme violence and discrimination which contribute to a high prevalence of HIV/AIDS.”
Some of PACHA’s 15 recommendations include:
- Relevant Health and Human Services (HHS) operating divisions should dedicate grant funds to projects specifically focusing on transgender health, particularly in the context of HIV prevention and treatment…;
- The Indian Health Service (IHS) should develop a health services protocol specific to providing culturally and clinically appropriate care for male and female bodied, Two-Spirit individuals, including HIV prevention, education, outreach, and treatment;
- And The Centers for Medicaid and Medicare Services (CMS) should require facilities and providers receiving any federal funding to undertake regular staff trainings on transgender cultural competency.
The report “Injustice at Every Turn” is one of the few studies that has some data about transgender HIV rates. According to the report, the HIV sero-prevelance among transgender women in the U.S. is more than seven times the national average. The PACHA resolution notes that there is a lack of adequate data about transgender HIV risk and infection rates and recommends ways to collect it. It also points out that transgender people are protected from discrimination in the Affordable Care Act and lists ways to ensure agencies are aware of this and have adequate funding in place to care for transgender people.
Transgender Law Center works to educate legislators, policymakers, and advocates about the importance of addressing the HIV/AIDS epidemic in the transgender community, and eliminating discriminatory barriers that transgender people face when attempting to access quality care. The staff has held meetings with personnel from HHC, HRSA, and the CDC to help educate them about the important issues addressed in the PACHA resolution.
Additionally, in collaboration with Lyon-Martin Health Services, Transgender Law Center has spearheaded Project HEALTH: Harnessing Education, Advocacy, and Leadership in Transgender Health. Since 2008, Project HEALTH has led a comprehensive effort to improve access to and quality of healthcare for transgender people throughout California, and increasingly in other regions as well. Project HEALTH has trained more than 60 students in professional health programs through a clinical rotation hosted at Lyon-Martin Health Services and provided administrative, cultural, and clinical training to more than 25 community clinics and hospitals. In September, Project HEALTH launched TRANSLINE, an online consultation service for healthcare professionals seeking help caring for transgender patients. The team of leading organizations and practitioners has responded to more than 70 requests since September, with a 100% satisfaction rating.
Transgender Law Center works to change law, policy, and attitudes so that all people can live safely, authentically, and free from discrimination regardless of their gender identity or expression. http://www.transgenderlawcenter.org To learn more contact Mark Snyder,email@example.com, 415.865.0176 ext. 310.
- Transgender Women 49 Times More Likely To Have HIV, Study Says (dailyqueernews.wordpress.com)
- Arizona wants to ban transgender people from using washrooms not designated for their birth gender (theprovince.com)
- California lawmaker seeks rights for transgender students (mercurynews.com)
Getting through adolescence is hard enough.
There’s the agony of puberty, the mood swings and the withering self-consciousness. Then comes the clumsiness of emerging sexuality.
It can be overwhelming.
For some young people, the passage can be even more daunting. For a few Montana kids coming to terms with their attraction to the same gender — in a religious and rural culture that doesn’t always know what to make of them — the challenge can be deadly.
A 2009 survey of more than 7,000 lesbian, gay, bisexual and transgender middle and high school students aged 13 to 21 found that in the past year, at least eight of 10 students had been verbally harassed at school; four of 10 had been physically harassed; six of 10 felt unsafe at school; and one of five had been the victim of a physical assault, according to the Centers for Disease Control and Prevention.
LGBT youth also are at far greater risk for suicide. A national study of adolescents in grades seven to 12 found that LGBT youth were more than twice as likely to have attempted suicide as their heterosexual peers.
There is little specific research in Montana concerning how much of a role sexual orientation plays in youth suicides, said Karl Rosston, Montana’s suicide prevention coordinator. However, national studies have shown about 15 percent of youth who reported suicide attempts also reported same-sex attraction or relationships.
In Montana between 1999 and 2009, suicide was the second-leading cause of death for young people ages 10 to 24, behind unintentional injuries like auto and farm accidents.
In the two years between 2010 and 2011, at least 57 youth ages 15 to 24 killed themselves in Montana.
It’s difficult to figure the current number of gays and lesbians in Montana. However, according to a report from the Williams Institute, a national think tank at UCLA researching sexual orientation issues, there were 1,600 same-sex couples in Montana as of 2005, up from 1,200 in 2000. This number is almost certainly higher, especially since the study didn’t include youth. The number of male couples and female couples were nearly evenly split, with 806 men and 853 women.
About 2.6 percent of Montana’s population — around 26,000 people — is gay, lesbian or bisexual, according to the report.
Teen suicide is a microcosm of what’s happening throughout the state, which has had one of the highest rates of suicide in the nation for more than 30 years. Consider that during 2010, at least 227 Montanans took their own lives. Another 225 people committed suicide in 2011.
D Gregory Smith, a Bozeman-based licensed mental health counselor and executive director of AIDS Outreach, counsels LGBT high school and college students, gay men and a handful of heterosexual men and women. He also counsels parents wondering if their child’s sexual preference can be changed, although he doesn’t believe that’s possible. He counsels parents on how they can better understand their child’s sexuality.
Most of his youth and young adult clients have contemplated suicide.
“Their biggest fear is believing they cannot have a good life,” said Smith, a former Catholic priest who is gay and HIV-positive. “They believe they cannot stay in Montana, be who they are and be happy.”
There’s so much more here: http://billingsgazette.com/news/state-and-regional/montana/lgbt-youth-at-increased-risk-for-suicide/article_d7e8360a-f437-5ba6-8d03-8aeb2d67d701.html#ixzz2MVkAw1EE
- LGBT youth at increased risk for suicide (billingsgazette.com)
- Former Priest: “I got the cue he’s falling in love with me” (Billingsgazette.com
- Musical Nun Sings: ‘You Are Not Alone’ (dgsmith.org)
Here’s the link to the effects of the sequester for Montana.
One of the great “benefits” being the inability to pay for 117,000 HIV tests- now free for any Montana resident. And there’s more besides.
- The Sequester is Coming! (blogs.barrons.com)
- Sequester Could Lead To Massive Cuts In HIV Testing, Treatment (pinkbananaworld.com)
- Montana passes law allowing motorists to eat animals they kill with cars (metro.co.uk)
- Wyoming officials: White House report does little to alleviate ‘sequester’ confusion (trib.com)
Some sad (and possibly troubling) news for those of us living with HIV: NAPWA, the lobbying and rights organization for HIV+ persons in the U.S. has closed and filed for bankruptcy. John Manuel Andriote has the story- be sure to read the last paragraph.
Although it wasn’t a total surprise when the National Association of People With AIDS (NAPWA) announced on Feb. 14 that it was suspending operations and filing for bankruptcy, it felt like a shock. Exactly 30 years after its founding by the very first people to go public about having HIV, all of them gay men, NAPWA’s financial immune system finally collapsed under the weight of allegations of misused funds and the demands of creditors, employees and a landlord who wanted to be paid.
NAPWA was never exactly flush with cash, and it restructured itself several times over the decades. But a Dec. 5 open letter to the community from its board made it clear that the end was all but inevitable. Longtime HIV activist and POZ magazine founder Sean Strub blamed NAPWA’s business model and leadership that was “inexperienced or inadequate, and, in some cases, compromised or lacking integrity.” He added that “accountability and transparency were concepts largely absent from their operations in recent years. The problem was so deep-rooted that even the most dedicated and sincerely committed people on their board or staff could not fix it.”
Time (and an apparent investigation by the Montgomery County State’s Attorney’s Office) will shed light on what exactly led to this sad state of affairs. Meanwhile, a history lesson is in order to understand what NAPWA was and why its demise is a sad (and worrying) occasion for tens of millions of people.
On May 2, 1983, a small group of gay men with AIDS carried a banner during the first AIDS Candlelight March in San Francisco. “Fighting For Our Lives,” it said. A month later, several men took the banner to Denver for the Second National AIDS Forum, held in conjunction with the then-annual gay and lesbian health conference. A dozen people with AIDS met together at the forum to discuss how they might organize themselves. They agreed that the slogan on the banner would be their slogan, because it captured what it was that they were doing: fighting for their lives.
The group proposed that local groups of people with AIDS from around the country join together to form a national group. They adopted a manifesto called the “Denver Principles,” a series of rights and recommendations for health care providers, AIDS service organizations and people with AIDS themselves. The Denver Principles became the charter of the self-empowerment movement for people with AIDS. Its preamble said, “We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.’”
After the Denver meeting, Bobbi Campbell, Michael Callen from New York and other gay men with AIDS and their supporters formed the National Association of People With AIDS. For three decades the Denver Principles were NAPWA’s foundational document. “NAPWA was the last keeper of the flame for the Denver Principles,” said veteran ACT UP New York activist Peter Staley, “and it’s sad to think there are few if any institutions willing to defend them going forward.”
But even without the organization built around them, the principles endure because they are now woven into the world’s responses to HIV/AIDS. At the United Nations’ 2006 High Level Meeting on AIDS, 192 nations unanimously adopted the Political Declaration on HIV/AIDS, including the so-called GIPA (Greater Involvement of People With AIDS) Principle. GIPA essentially made universal the principles of self-empowerment and involvement first articulated by that group of brave gay men who met in Denver in 1983.
Still, NAPWA’s demise leaves a void that no other organization has yet shown the capacity to fill. Terje Anderson, who was a NAPWA board member before joining its staff as policy director in 1998 and then serving as executive director from 2000 until 2006, said in an interview that one of the group’s most important legacies is the new community leaders NAPWA trained. “Something NAPWA wasn’t credited for,” he said, “was figuring out ways to identify, train and support leaders, not just white gay men from New York but people of color, women and people in rural areas.”
The group made other major contributions too. NAPWA was one of the first HIV/AIDS groups to advocate for HIV testing as a tool of personal empowerment. Anderson pointed out that the group was instrumental in helping pass the Ticket to Work and Work Incentive Improvement Act of 1999, which allowed people receiving Social Security disability benefits to return to the workforce without losing their Medicaid or Medicare health insurance. This was hugely important as improved medical treatment beginning in 1996 allowed HIV-positive people to live with the virus rather than await an inevitable death from AIDS.
“One of the things I’m proudest of,” said Anderson, “is that when I was there, we were the first domestic group that started to say we need to talk about the global epidemic. Other groups said, ‘Oh, no, that will take away from our funding. We said, ‘No, you have to worry about our African, Caribbean and Latin American brothers and sisters.’”
Tom Kujawski, who was NAPWA’s vice president of development from 2004 to 2010, said the organization “became vulnerable due to lax internal financial systems and controls further complicated by changing senior management.” He said there were contributing factors that hastened NAPWA’s end, including decreased philanthropic and corporate support due to the faltering economy and competition for that support, “fractionalization of the HIV/AIDS movement” and over-reliance upon federal grants.
Kujawski said he hopes NAPWA will endure through the Chapter 11 process “and emerge as a truly new entity.”
Sean Strub said, “I’m sad to see them go but hopeful that this will provide an opportunity for a more effective, representative and accountable national voice for people with HIV to emerge.” Although there are other national organizations run by people with HIV, including his own Sero Project, Strub said a group like NAPWA “is needed more than ever before.” He said a strong national voice is needed “to deal with rising stigma and criminalization, declining interest in and commitment to empowerment principles as embodied in the Denver Principles.” He added, “We have to do it amidst a massive HIV industry where it is sometimes difficult to sort out the real agenda driving individuals, institutions and initiatives.” If these aren’t reasons enough, Strub said, “Most of all, we need to focus on how we bring attention and effective resources to the epidemic that continues to grow amongst young gay men and especially amongst young African-American men who have sex with men.”
One big reason that NAPWA’s loss is shocking is that now gay and bisexual men, who account for two thirds of new HIV infections and most of those living with HIV in the U.S., will have no strong HIV advocates in Washington. The national LGBT organizations for years haven’t advocated forcefully for proportionate HIV prevention funding, or for anything else significant to the health and well-being of American gay and bisexual men with or at risk for HIV/AIDS. Instead, they have been focused like laser beams on marriage equality, an issue dear to the hearts of the privately insured, mostly white professionals who fund them. The young gay men of color at greatest risk and carrying the greatest burden of new HIV infections aren’t priorities. As Sean Strub put it, “Remember how angry we were with the Reagan and Koch administrations when they ignored the crisis and let it rage unabated? What about when we were abandoned by our own community’s leadership and institutions? Why can’t we be angry then as well?”
- STUDY: Nearly 50% Of Gay Men Using Hook-Up Apps Engage In Unprotected Sex (queerty.com)
- Talk HIV/AIDS at home (fijitimes.com)
- President’s AIDS council calls on feds and states to repeal HIV criminalization laws (rawstory.com)
Here’s an opportunity to do some good:
FREE 3-day Training!!!
Click here for more info: CTRS Training February 2013
And if you’re interested in becoming a testing associate for AIDS Outreach, please email firstname.lastname@example.org
- Michigan Awards Nearly $2.5M For HIV Prevention (detroit.cbslocal.com)
- Rollout of provider-initiated HIV testing (africanpress.me)
- Multiple factors affect HIV prognosis, study shows (yaledailynews.com)
- Need for education in the prison system imperative (kaieteurnewsonline.com)
- Rapid HIV testing first (theage.com.au)