Monday, June 16, 2014

HIV and Aging

While combination anti-retroviral therapy (ART) has transformed HIV from a killer into a chronic disease, it has created a large and growing group of people aging with HIV. People aged 55 and older accounted for almost one fifth (19 percent, 217,300) of the estimated 1.1 million people living with HIV infection in the U.S. in 2010. In addition, the CDC reported that in 2011, people aged 50 and older accounted for 24 percent (7,771) of the estimated 32,052 AIDS diagnoses in the United States. For many people aging with HIV, this raises a whole new set of questions: Who will care for me as I get older? Will I become socially isolated? What kind of planning is needed to ensure that my finances can support me into my 60s, 70s, 80s and beyond? In talking to one friend of mine, now 68 and living with HIV since 1978, he said, “In the 1980s I was sure I would be dead in a year or two. I loaded up all my credit cards and took four of my friends to scuba dive in the Caribbean. I had no idea I’d still be here 25 years later. It was an adjustment to start working again, saving money, and planning for retirement.” Social isolation is a problem for many people living with HIV and AIDS. Studies have shown a majority of them live alone and many have been abandoned by families due to their diagnosis or substance use or sexuality. Places like the Boston Living Center provide a drop-in center where people living with HIV can get meals, counseling, and access a computer center and even art classes! Because of the stigma associated with HIV in the older population, older people are diagnosed with HIV longer after initial infection, and progress more quickly to AIDS than younger people. For example, 24 percent of people aged 25-29 progressed to AIDS in 12 months, compared to 44 percent of people aged 50-59, 49 percent of people aged 60-64, and 53 percent of people aged 65 and older. There are few HIV prevention programs targeting older Americans who may not be as knowledgeable about HIV infection and how to prevent it. While older people visit the doctor more frequently, they are less likely to discuss their sexual or drug use habits compared with younger patients, and their doctors are less likely to ask older patients about these issues. Older people living with HIV/AIDS have many additional issues to worry about, beyond the direct impact of HIV infection. The use of many HIV medications, especially over time, may have side effects including increased risk for cardiovascular disease and diabetes. Long-term survival with HIV disease may create a risk of inflammation that may be associated with increased cancer risk. In general, cancer risk increases with age and there is evidence that HIV survivors may be at greater risk for anal and cervical cancer, skin cancers, and Hodgkin’s lymphoma. Many long-term HIV/AIDS survivors, especially those diagnosed prior to 1996, have a legacy of post-traumatic stress based upon the fear, hardship and loss they experienced facing their own mortality and that of their friends and loved ones. A recent book by NYU Professor Perry Halkitis, “The AIDS Generation: Stories of Survival and Resilience,” describes many of those who faced the epidemic and lived to tell the story. There is much to be learned from the resilience of those who have managed to not only live but also find the strength and compassion to continue to help others. Note: This was written for and orginially posted on the website of the Massachusetts Healthy Aging Collaborative - a great site I might add! See http://mahealthyagingcollaborative.org/aging-with-hiv/

Friday, July 27, 2012

A New Day for Washington DC

Sunday, July 22, 2012 was a good day for Washington DC. After a cool and rainy Saturday the sun struggled to come out and temperatures warmed but weren’t their usual oppressive summer swelter. At the DC Convention Center US Representative Barbara Lee addressed the first International AIDS Conference to be held in the United States in 22 years. It was located here, Rep. Lee reminded the 20,000 plus delegates, due to a bi-partisan lifting of the travel ban on people with HIV into the United States, signed by former President George H.W. Bush and put into effect by current President Barack Obama. The conference also marked just over two years since the unveiling of the National HIV/AIDS Strategy, the country’s first. And there was progress to report on the three main goals and very important but less known fourth goal of the Strategy, or the NHAS as it is known. “Health care is prevention and prevention is health care,” said Dr. Jonathan Mermin of the CDC, at a pre-conference satellite session on the NHAS. This symmetrical syllogism reflects how bio-medical research is leading the way in the fight to end the epidemic. Specifically, Dr. Mermin was referring to a study that showed sero-discordant (one HIV positive, one HIV negative) heterosexual couples were 96% less likely to transmit the virus among themselves if the HIV positive partner was taking HIV medication, by effectively suppressing the virus within his or her body. This and other new tools to prevent spread of HIV has informed the three-pronged strategy to reduce new infections, effectively link people living with the virus to care and maintain them in quality care, and reduce disparities across populations (now largely gay and bisexual men and African-Americans) who are affected by and infected with HIV. John Snow, Inc. has been evaluating the 12 Cities Project, a part of the NHAS intended to improve coordination, collaboration and integration among federal entities working on HIV/AIDS. Dr. Andrew Forsyth, of the HHS Office of HIV/AIDS and Infectious Disease Policy, acknowledged the work JSI has done that shows both frustration with the slow process of coordination among federal agencies but also progress in collaborative planning both within federal agencies such as CDC, HRSA, and SAMHSA, as well as widespread efforts to link HIV care and prevention in the 12 US Cities with the greatest burden of HIV/AIDS. Does more need to be done? Yes, we all need to ask how we can do our part to reduce the stigma around HIV that creates barriers to people knowing their status, getting and staying in care and taking the medications that can keep them healthy and prevent further HIV transmission. But was it a good day for 25,000 delegates to the In Washington DC in marking progress in the fight against AIDS? Absolutely. Oh and the very good young Washington Nationals baseball team broke a three-game losing streak by defeating the Atlanta Braves 9-2. A good day indeed. This blog is also available on the JSI website at http://thepump.jsi.com/a-good-day-for-washington-d-c/

Tuesday, August 23, 2011

A New Beginning For HIV Prevention

Read my blog from the 2011 National HIV Prevention Conference. It can also be found on the John Snow, Inc. (JSI) blog, known as "The Pump" at http://thepump.jsi.com/HIV/?p=637:

It feels a bit ironic to be blogging for the first time from the National HIV Prevention Conference on the same day that the Boston Globe publicized the drastic budget cuts that the Massachusetts HIV/AIDS Office has made to its very successful HIV prevention programs. [See http://www.boston.com/lifestyle/health/articles/2011/08/15/mass_hiv_programs_face_cuts_as_us_shifts_funding/?page=2 ] At the same time, the notion of “a new beginning” for HIV prevention, despite the new austerity, has been very much at the heart of the opening day of this meeting.

For example, at today’s opening plenary, Moupali Das, Director of HIV Prevention Research at the San Francisco Department of Health (SFDOH), describe their efforts since 2010 to “test and treat” - meaning that “All patients, regardless of CD4 count, will be evaluated for initiation of anti-retroviral therapy.” The SFDOH maintains this policy was based on new information about the health benefits of early treatment for individuals infected with HIV. However, a “side effect” of this policy is to reduce “community viral load” - the amount of HIV circulating in individuals in the community - and thereby reduce new infections. The downward trend in new infections in San Francisco appears to support the effectiveness of the policy.

Also at the opening plenary, Dr. David Holtgrave of Johns Hopkins University described a shift from looking at the cost-effectiveness of HIV prevention strategies to modeling activities to find the “optimal combination of HIV prevention, care and treatment services” in each jurisdiction. His modeling of this optimal mix has provided a blueprint for the City of Baltimore to reduce new infections while moving those newly diagnosed into care quickly. However, Dr. Holtgrave noted that even with this mix of services, additional funds would be needed for Baltimore to meet the goals of the National HIV/AIDS Strategic Plan (NHAS).

Richard Sorian, Assistant Secretary for Public Affairs at the U.S. Department of Health and Human Services, reiterated the need for broad public education with respect to HIV/AIDS, as envisioned in the NHAS. He reported that according to the Kaiser Family Foundation, the number of Americans describing AIDS as the nation’s “most urgent public health problem” declined from 68% in 1987 to 7% in 2011. With AIDS out of the limelight, more people in this country need basic information about how HIV is and isn’t transmitted, how to prevent transmission, and how we can all combat stigma and discrimination. The good news, according to Sorian, is that the percentage of young adults concerned about HIV/AIDS increased between 2009 and 2011 indicating that a growing number of young people are paying attention to this issue. The bad news is that young gay and bisexual men, and especially young African-American gay and bisexual men, are the only groups in the U.S. experiencing increases in HIV infection rates.

A major theme of the conference is using resources wisely in an era of resource constraints. At a breakout session focussed on use of surveillance data, numerous presenters made the case that surveillance data, including electronic laboratory reporting, can be an essential and existing source of data to track trends in the epidemic and progress on almost all of the goals articulated in the NHAS.

Dr. Lucia Torian, Deputy Director of HIV Epidemiology at the New York City Department of Health, proposed that we begin to consider opening HIV surveillance registries to medical providers, to assist patients by maintaining a continuity of care as they move from provider to provider or in and out of care. This strategy would duplicate the success of other electronic surveillance systems, such as immunization registries. If HIV/AIDS is truly to be de-stigmatized and treated by our health care system as just another disease, notions such as this one, that seem almost unthinkable today, may soon become reality.

Monday, June 23, 2008

Gay/Bi/Trans Men’s Health – What Next?

Now that we are two years into the post-Eric Rofes period of the gay men’s health movement, it is a good time think about what we know, what we need to know and how we can continue the only grassroots movement dedicated to thinking about, working for and advancing our collective health.

The development of a clear, communal voice for the gay men’s health movement continues to be our single greatest challenge. There is no voice in this country speaking on behalf of gay men’s health. However, this is not the same thing as a lack of leadership. In fact, due to Eric’s work and the work of many movement activists, there many leaders in gay men’s health around the country including researchers, activists, executive directors, public health practitioners, trainers, and writers working in this area. Yet, there isn’t a consistent voice or source for information when the media seek a response to the latest “gay men are spreading such-and-such now” report. I propose that the gay men’s health summit leadership bite the bullet and form the National Gay Men’s Health Collaborative, find some grant money, have a high-end designer create some snazzy letterhead and establish a formal national presence.

Eric resisted this, arguing that creating a formal institution would, inevitably, replace grassroots, de-centralized thinking, organizing and decision-making with centralized, top-down thinking focused more on the needs of an organization rather than the health of gay men. Also, organizations inherently tend to be more conservative and he may have been concerned that sex-positive messages and thinking that was inclusive of the S&M, Nudist, Bear, Kink and communities would be stifled.

In the absence of a clear voice, we often have no voice or the voices of contrarians or conservatives, who the media love to haul out to show not all gays (or black or latinos) are liberals.

What is the agenda for such a group or for the movement generally besides just having such a voice? Well, it would be shortcutting a true grassroots process to suggest any agenda as the agenda, but in the spirit of making each of our voices heard, here are some ideas:

 We need more documentation and understanding of how naturally-occurring activities provide resiliency and support to the gay/bi/trans male communities. This includes everything from Gay Men’s Choruses to Men’s Naked Yoga to Bear Circuit Parties.

 There should be a coordinated effort to study resiliency factors for gay/bi/trans men across the lifespan. In other words, what supports at the individual, family, community and society level help gay/bi/trans men lead healthy lives from birth through old age? What are our “families of choice” and how are they evolving? These may include “traditional” networks of friends or the more recent movement to parent through adoption, alternative insemination, and use of surrogates.

 More research, policies and programs that address the needs of bisexual men, as well as “men who have sex with men” (MSM) and “men who have sex with men and women” (MSMW) who don’t identify as gay or bisexual. As more population- based data become available, we are learning that of men who have sex with men somewhat less than half identify as gay. Thus, it is likely that a majority of men who have sex with men have a sexual orientation identity other than gay or no “sexual orientation identity” at all. What are the health issues of these men? How do their family supports and structures differ from gay men?

 And let’s talk about microbicides, microbicides, microbicides, non-occupational PEP and PREP, and microbicides. Did I mention microbicides? We need a range of non-behavioral prevention strategies to stop the spread of HIV/AIDS. Traditional prevention remains important, especially for younger men who are likely to and able to make a lifelong commitment to safe sex (probably at least half of us, if not more.) However, for the sluts , we need something that will stop infection even when engaging in unprotected intercourse. It’s that simple. [Note: Just kidding about the sluts comment! As a long-term HIV positive man who became infected when there was some uncertainty about transmission (though condoms were already being encouraged, informally), I appreciate that not all poz guys are sluts. Just the ones that I know. Just kidding!]

 We need a broad, inclusive and non-homophobic system of substance abuse treatment across the United States. Every community and population group in the U.S. needs this. However, data continue to indicate higher rates of substance abuse among gay and bisexual men compared to their straight counterparts. Of course, we need to work “upstream” to address the homophobia that pervades society to reduce the conditions that lead to substance use. However, we also need treatment systems that are adequate to the task of supporting gay/bi/trans men through the recovery process. These treatment systems may help reduce transmission of HIV as well. However, we can’t depend on HIV resources to fully address the “syndemics” of HIV and substance abuse (along with depression and anxiety.) Each of these need to be addressed separately and in coordination if we are to provide effective, holistic help to people in need.

 While we’re at it, let’s build the international movement for gay/bi/trans men’s health. Working internationally is complicated, exhausting and potentially dangerous. However, it is urgent to bring our best thinking and whatever resources that are available to bear on supporting and learning from our gay/bi/trans men live across the globe.

I’ve not specifically mentioned the area of research on health disparities, a part of my own work the past several years. Having accurate, population-based, up-to-date information about disparities between gay/bisexual/trans their straight counterparts, is needed to properly develop and deliver public health interventions in areas as diverse as obesity, health aging, cancer prevention, oral health, etc. Further, the same is true for differences based on racial and ethnic disparities among gay, bisexual and trans men.
While work in these areas has begun, we can’t be complacent in assuming they will continue or that there are adequate resources to do the job right.

However, I’ve chosen to emphasize a few areas of critical need that are primarily assets-based approaches to help us prevent disease and build health, rather than measuring and treating illness. I suspect these ideas could keep us busy for a few decades at least. I look forward to hearing the ideas of others and working on them collaboratively with all of you.

Stay healthy!

Stewart

Tuesday, August 28, 2007

Larry Craig is Definitely Not Gay

A proud gay man lives his adult life with his male partner or husband, not a wife and kids. Gay men do not support a constitutional amendment to prohibit same sex marriage. Gay men do not vote against long-overdue legislation that would protect gay men and lesbians from discrimination in the work place (the Employment Non-Discrimination Act or ENDA).

On the other hand, repressed, hypocritical, right-wing politictions with homosexual tendencies behave exactly as Senator Larry Craig (R-Idaho) has done in the past two months and throughout his political career. How ludicrous to believe that one of the hundred or so most powerful people in the United States was intimidated by a Minnesota beat officer into confessing to a crime he didn’t commit.

In a “he said, he said” case such as this one, Senator Craig could well have denied the officer’s interpretation of the several easily misunderstood actions the Senator reportedly took in the airport bathroom. Moving from one stall to another? No toilet paper! Tapping one’s foot toward the next stall? Groovy muzak! Waiving at your stall neighbor under the divider? Those crazy Idahoans are so friendly!

Of course, unlike most closeted men with homosexual tendencies caught soliciting sex in a public restroom, Senator Craig thought he held a trump card, literally, his business card. He waived it at the officer like the “Get Out of Jail Free” card in Monopoly. Too many nameless and unheralded closeted men with homosexual tendencies have not had that card to play and hundreds, actually thousands, have lost jobs, families and – through suicide – their lives as a result of similar arrests. If Senator Craig hadn’t lost his nerve, if he had stood tall and claimed that as a U.S. Senator it was his God-given right to have sex in any bathroom he saw fit….Well, let’s just he could been immortalized as the patron saint of all closeted men with homosexual tendencies. What a missed opportunity!

Though Larry Craig is clearly correct when he says he’s not gay, he was a wrong about another thing. Larry Craig claimed his arrest cast a “cloud over Idaho.” This is not true. Idaho is a beautiful state with crystal clear skies and lakes. What he cast was a big shameful, shroud-like cloud over the conservative right-wing in this country, which is just as homosexual as any other segment of the population, but refuses to accept the honesty and pride of being gay.

Thursday, February 8, 2007

We Love You Whoopi!

I’m posting here two posts I made in the last few days to the Gay Men’s Health Summit listserv. There is a big discussion about current ads featuring Susan Sarandon, Whoopi Goldberg, Amanda Peat and Rosie Perez that lovingly admonish the gay community for using crystal meth and barebacking. Some men on the list criticized the ad campaign as ineffectual and offensive – rich straight (?) female actors telling gay men how to live. Others thought it useful that celebrities with some credentials in the gay community publicly expressed their concern about continued HIV transmission.

Post 1:

In several settings I've been in over the past year (perhaps starting at the MSM and HIV pre-conference summit in Toronto this summer) it seems we're at another crossroads of sorts. The holistic camp (of which this listserv was birthed) says we need to affirm gay culture, provide healthy outlets, nurture discussion and support the development of a Zeitgeist that values gay men, and gives them hope and reason to take care of themselves and each other. The public health camp (where I work, if not reside) continues to stress the complicated interaction of risk factors - the putative pandemic of childhood sexual abuse, depression, and substance use disorders - that may fuel risky behavior. The former group finds solutions in institution building and messages of reassurance and affirmation and the latter group continues to see specific intervention - on the Internet, through individual and group counseling, and other psycho-educational interventions that will succeed given the "intervening factors" affecting people's ability to hear the message.

The struggle between the two camps seems to focus on resources - the groups have very different ideas on how best to spend money. But perhaps even more so there seems to be a bit of antipathy between the two groups regarding the fundamental view of gay male culture and whether it is "sick" or not. Ironically, a lot of us, including me to some extent, who have argued for a holistic, gay male health approach to HIV, now find ourselves in a somewhat contrarian position - wondering who these folks are who are suddenly expressing this public concern about the gay community. It is true that Whoopi and Susan have been allies for a long time, but there is something peculiar in the way they are not standing next to us and advocating for us to the straight community but have "turned around" and are now facing us and speaking directly to us, publicly, and telling us to get our act together. It's unnerving - like we collectively as gay men have been caught with our pants down by a caring maternal/big sister figure. Literally.

I'm not sure where we go from here, except that I would guess that, despite the odes to the goodness of this fine campaign as shared in the Gay City News article, these ads will have about as much impact on the rate of HIV transmission as President Bush's "surge" will bring calm to Bagdad. I think perhaps the greatest challenge will be at the local institution level, where many gay community centers and health centers are struggling to make holistic models work, while more targeted interventions - with their high cost and the inherent difficulty in finding those of us most at the margins and most at risk - fall by the wayside.

Post 2:

After excoriating celebrity worship somewhat, I remembered last night that for many years, one of the things that put a cap on my drug use was hearing Katherine Hepburn many years ago (on Dick Cavett maybe?) talking about why she was against drugs. She said in her very Kate way, "When I speak to someone I want them fully there, right in front of me, looking me square in the eye and completely cognizant of what I'm saying." Whoa!

So why do I still think it's right to be skeptical of this campaign? Kate's remarks were spontaneous (I assume) and not paid messages intended to preach to anyone in particular. It was just hearing an interesting perspective from someone who, at the time, I respected a lot. I think we have a responsibility to think critically about each campaign because there are limited funds to do this, so if these messages help 3 people, it's not okay, it's a waste of resources. However, who knows for sure? They may help more than I think and perhaps more among younger folks. It will be interesting to see the evaluation results.

In any case, I keep coming back to the same point in my mind. Those of us working in HIV prevention are engaged in really hard work. Most gay men avoid cum in their ass. A few don't give a fuck about it. And some on the margin let it happen - but they mostly do so because they are on the margin for a variety of reasons and not easy to find, reach and, ultimately, prevent the fateful moment. HIV transmission is a rare occurrence, relatively speaking. There are just lots and lots and lots of sex acts that create too many opportunities for this transmission to occur. My hat really goes off to Jim Pickett and others who have worked like crazy to get anal microbicides funded, researched, and on the shelf so gay men would have another tool to use to reduce that risk even further.

In loving brotherhood,

Stewart Landers

Thursday, February 1, 2007

Health Care Proxies

If you read my first blog, you may notice that my training in law and planning would not necessarily lead to a career in public health. My father, Irving Landers was a podiatrist who practiced in New York City from the 1950s till his death in 1973. My maternal grandfather, Benjamin Rose, was a barber and healer. So, perhaps the health care field was in my blood, despite my academic choices. The other thing that happened was the AIDS epidemic, but that’s not what I want to talk about today.

I want to talk about health care proxies. In part, this is because my partner and I have a dear friend whom I call J. who suffered a massive stroke three weeks ago. It was a hemorrhage that bled in the back of her brain into her cerebellum and onto her brain stem. J. is totally disabled and able to communicate somewhat with eye blinks, for the very short amount of time each day that she is able to be awake.

J.’s health care proxy document directed that life sustaining treatment, also referred to as "heroic measures," not be used to sustain her if there was “no reasonable likelihood of recovery from severe mental or physical disability.” It was also said in the document, that she wanted to die with dignity. The neurosurgeon and neurologists at Mass General agree that J. is likely to remain severely disabled as a result of the stroke damage.

Despite this, her health care proxy took almost three weeks to discontinue life support. It was unclear exactly why the proxy waited this time. Perhaps to wait and watch J.’s progress for a period of time, just in case. She also waited, perhaps, a reasonable time to help family and friends adjust to the shock of what has happened.

It seems to raise a number of issues around health care proxies that I never thought of, even though I’ve had one in place for almost a decade.

Look at different language and be as specific as possible. The language on many proxies is very general and can be interpreted in many different ways. Would you accept ventilators and feeding tubes if there is a chance you could recover in a year? Do you want to be kept alive for a month regardless of circumstances, just to make sure no one pulls the plug too quickly?

Talk to your health care proxy. This is a most critical part of implementing a health care proxy that I’ve never heard discussed. This isn’t surprising as there is a lot taboo and inhibition in our culture about discussing disability and death. It’s just something for which many people can't find the language or setting or emotional strength.

First, we should talk about what exactly we do and don’t want – should we be resuscitated if we are having a heart attack? Would we stay alive with a 20% chance to recover? 5%? 1%? What if we wouldn’t have our full mental facilities? Slightly reduced mental facility? The mental faculty of someone with mild retardation? The mental facility of a five-year old? A ten-year old? One can never cover every situation, but a frank discussion could help provide guidance to the proxy should they ever, heaven help, become your voice.

Second, in the worse case scenario, a health care proxy does need to be prepared to remove a ventilator and feeding tube, if that is your wish. It may seem macabre to ask your dear friend if they would be willing and able to do this for you, but this is what you are potentially asking them to do when they agree to be your proxy. For many people their closest loved one is the right person for this task. For others, it may be someone who is trusted but not necessarily the most beloved person to you in the world.

Having a health care proxy document and asking someone to serve in that role is hard to think about, but something most folks over 40 should have in place. One of my colleagues, when I described the situations with J., said that perhaps there was something to the old way - when doctors, not family members, made these decisions. I don’t think we can or should go back to that time, but I understand the attraction to that idea.