HIV, Aging and LGBT people: A Metamorphosis

On April 3, 2008, my longtime friend Don (last name withheld) tested positive for HIV, the same day as his mother’s 56th birthday. He remembers the day vividly. “I had given blood to my doctor and a couple weeks later, I still hadn’t received a call. I called my doctor’s office and they said, ‘There’s an anomaly with your blood.’ I immediately freaked out and thought, ‘God, this is it.'” Don took the last appointment of the day and a few hours later received his diagnosis, along with a few referrals. He went home “to pull myself together, call my mom and wish her a happy birthday.” He wouldn’t share his HIV status with his mother for several years.

“It stopped me dead in my tracks,” he says of that day. “And even though having an HIV diagnosis isn’t the same as it was 15 or 20 years ago, I immediately saw the end. I had dreams where I would see this road that said: ‘dead end.'”

At 42, Don represents a notable demographic segment of the U.S. population living with HIV/AIDS. According to the Centers for Disease Control and Prevention (CDC), the highest rates of HIV prevalence, by age group, are among people ages 45-49 and ages 40-45—20% and 16%, respectively. As these people in their 40s and their older peers age, spurred in large part by medical advances, people age 50 and older will make up roughly 70 percent of Americans with HIV by the year 2020.

Yet aging with HIV can be especially difficult. Older adults with HIV report high levels of isolation, yet few community spaces embrace their full identities as older people, people with HIV and, in most cases, given the epidemic’s prevalence, LGBT and people of color. Additionally, medical research has found multiple health concerns related to aging with HIV—and the psychological dimensions of living with HIV, or a new diagnosis, can spur its own storms. Without a large-scale, dedicated response, the “younger” end of this older adult spectrum, including Don, will join their older peers over the next decade in entering an aging system unprepared to meet their unique needs, despite their overwhelming numbers.

*****

Don was born in 1972 in Maple Heights, Ohio, a suburb of Cleveland he describes as comprised largely of Polish and Italian people (similar to his family), and one that depleted in size over the decades as the economy worsened. He recalls a mixed childhood that included a family dynamic in which tough issues were never discussed openly and only worsened as he grew older. “We laughed and we loved each other, but there was the divorce and the fighting and the aggression that overshadowed all of it.”

Don’s first memory of HIV is from 1985, when screen legend Rock Hudson publicly disclosed he had AIDS. Don remembers his family reacting to—though not discussing—the controversy that erupted regarding a kiss Hudson had shared with his “Dynasty” co-star Linda Evans on an episode a year prior. “I remember just hearing ‘AIDS’ and they would show pictures of him, and they would show pictures of people with lesions and looking sickly. Those were the first images that were infused into my brain.”

AIDS raged through the 1980s—inciting more than 100,000 cases by the end of 1989, according to the CDC—yet Don doesn’t recall any mentions of the topic until his freshman year in college in 1990. “During student orientation, they give you information about all of the available resources on campus, and they talk about the health center, and if you get an STD, and how to get an HIV test. ‘An HIV test?’ I thought. That was the first time it registered as something that people needed to pay attention to.”

As Don matured into his gay identity throughout his 20s, he still didn’t feel at risk for HIV. “I felt like, well, I’ll just pick the right guy who looks like he’s ‘clean.’ It was a beautiful, blissful denial and ignorance that allowed me to behave like I did and not see a connection between my behaviors and the consequence of what could have been.” In fact, after his first handful of HIV tests yielded negative results, he admits it gave him license to continue having unprotected sex for a few years longer, believing himself immune from HIV and other sexually transmitted infections.

Years later, he would seroconvert and find solace in disclosing his HIV status to a select network of friends. “When you tell people, when we come out, we’re telling people not just to share information, but it’s also to better accept ourselves.” He would reconcile his relationship with his estranged biological father. He strengthened ties with his sister and brother, the two remaining next of kin after a series of untimely family deaths over the course of a decade. And for two years, he co-facilitated an HIV support group for a local nonprofit that gave him a sense of purpose and exposed him to a multitude of motivational stories. He soon saw himself as “one little story among a greater picture.” He realized then, “Okay, we’re all in this together and we’ll figure it out.”

*****

But are we united on this issue—and will we figure it out? My experience in lesbian, gay, bisexual, transgender and queer (LGBTQ) rights shows that few organizations prioritize HIV/AIDS, an omission that’s more glaring in the aging and long-term field.  More broadly, this topic seems virtually absent in the media, in government, and across progressive activist circles and community spaces. Governments rarely support this population, and too few aging and health providers are versed in the clinical and social support needs of people aging with HIV.

At SAGE, we frequently encounter older people with HIV who are severely isolated, in poor health and without proper financial means. Some have lived with HIV for years; others have been recently diagnosed, often with both HIV and AIDS; and many probably don’t know they have HIV. Recently I asked a case manager who runs an HIV support group in New York City about the group’s willingness to discuss end-of-life planning and set in place the necessary documents. He replied that people who have long fought to survive avoid discussing death for fear of jinxing their good luck. And what do we make of older people who tested positive in the 1980s and early 1990s, assumed they would pass away, spent their savings and then miraculously survived—impoverished and jarred by their newfound survival?

A May 2014 policy report offers large-scale recommendations. Federal agencies should fund HIV prevention programs that are aimed at older people who might require unique messaging rooted in generational differences. The CDC should encourage HIV testing among people older than 65 and promote their overall testing guidelines among all health providers. All states should adopt Medicaid expansion under the Affordable Care Act to ensure that more low-income people can access proper care—a disparity that disproportionately affects people of color largely concentrated in states that have opted out of Medicaid expansion. Federal agencies should fund more research on what it means to age with HIV, especially among LGBT people and people of color, the hardest hit groups. And the U.S. Department of Health and Human Services should issue treatment guidelines for the clinical care of older people with HIV, many of whom have increased comorbidities as early as age 50.

Six years after his diagnosis, Don grapples with remaining optimistic in a time of grief. “I’m probably healthier than I have ever been, yet I’m continually reevaluating my life and purpose, especially with the death of my family. You can’t help but think, ‘What’s my fate?” He nevertheless sees the fact that he was diagnosed on his mother’s birthday (who passed away from cancer in December 2013) as symbolic motivation. “It’s her birthday. But it also became a different sort of birth process for me because it was me seeing my life and myself in a new way for the first time.”

Don now seeks to create a simple life with clear priorities, minimize his material belongings, and focus his time on people who matter, such as his partner of three years. And when he ponders how he wants to live his later years, he replies: “Enjoying the day. Not worrying about what’s going to happen five or 10 years from now, or a year from now. I want to enjoy this moment and take it all in for what it is.”

*****

I remember the day Don shared his HIV status with me. He brought me into his kitchen and told me in the clearest of terms, a mix of bluntness and vulnerability in his tone—everything I know about his personality. I measured my reaction, asked questions and downplayed the severity and stigma, a response I would want in a reverse scenario. We both agreed HIV was a different illness than what we read and witnessed from the 1980s and 1990s. We had a dinner party to attend that evening and before we left the house, I escaped to his upstairs bathroom, shut the door and wept. Outside, the streets of downtown Denver were lined with delegates and supporters for the 2008 Democratic convention, celebrating the possibility of a new era. As we drove through this tide of hopefulness, I sat still next to my rattled friend. I thought about life’s inevitabilities, what awaits and changes us, and how often we as LGBTQ people have had to defend our bodies from the forces that routinely assault us. A new era, yes. A different narrative, no.

Is this the dilemma that rests at the heart of sexual liberation for LGBTQ people? We crave fulfilling sexual lives, autonomy over our bodies, new norms, and the freedom to express ourselves as we see fit, without judgment, discrimination or criminalization. Yet we still encounter consequences, and our culture seems ill-prepared to deal with the contradictions that come with the fluidity and complexity of identity, desire and choice. And we know too well that a serious illness can be transformative or debilitating, depending on one’s resources and level of support. Life can seem so pressed and so short.

We have also been trained to critique and reform the same health care system that we must ultimately rely on. Many of us are too well-read and historically astute to blindly trust the industries and institutions that profess to protect us. Medications are conceived in laboratories governed as much by profit as by medical need. Government and private funds to nonprofits come with illogical restraints, ideological assumptions and unrealistic deliverables. So how do we live healthy, sexually liberated lives as queer people in the context of cultural repression and widespread economic exploitation? Does this explain the apathy, even aggression, against new PrEP treatment that could prevent scores of HIV infections if more people were on it? We remain rightfully dubious about the lines between altruism and marketing, prevention and “poison,” our health and their profit.

I’m inspired that Don sees the date of his diagnosis as a form of re-birth; it’s both poetic and precise. Yet Don’s inspiring metamorphosis, strength-based outlook and access to both medications and social support are not evenly shared among older people. What we need are solutions that draw from the hardship of people who struggle with the daily coping of HIV/AIDS, physically and financially, as well as from people such as Don who have survived HIV, grown wiser and in many ways, healthier.

It might be that HIV and aging, when seen as distinct concepts, are two manifestations of the same notion; your life becomes either more meaningful or more precarious depending on your state of mind and what surrounds you. Or perhaps the pervasiveness of death clarifies our identities; we anticipate our end as a means of reformulating our old selves. When I ask Don about the legacy he’d like to leave when he passes, he replies, “I want people to know that HIV influenced me because it made me look at life in a totally different way. It took me out of myself temporarily in order to get to know myself all over again.”

Follow Robert Espinoza on Twitter: www.twitter.com/EspinozaNotes

This article by Robert Espinoza originally appeared in the Huffingtonpost.com Gay Voices blog.

Robert Espinoza is Senior Director for Public Policy and Communications at Services & Advocacy for GLBT Elders (SAGE). The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.

AIDS AND AGING: A REALITY THAT DEMANDS OUR ATTENTION

Maria Eugenia Hernandez-Lane, Vice President of NHCOA

Maria Eugenia Hernandez-Lane, Vice President of NHCOA

The AID Institute’s 7th annual National HIV/AIDS and Aging Awareness Day (NHAAAD) will be observed September 18, 2014 with the theme “Aging is a part of life; HIV doesn’t have to be!” For more information about HIV/AIDS and older Americans or to become involved with the campaign, visit www.NHAAAD.org.

Among diverse communities, the stigma of HIV is a cause of shame, embarrassment, and worse of all, denial and silence. When denial and silence are present, the lack of communication and information lead to myths and misinformation. Worst of all, silence results in increased infections and is inevitably compounded by stigma, which leads to people living with HIV who are undiagnosed and therefore, untreated.

In the U.S. alone, 1 out of 6 persons is unaware s/he is HIV positive. The reality is that older Americans are just at risk of HIV infection as younger age groups are.

[Learn more HIV statistics in the United States]

In fact, adults 55 years and older represented nearly one-fifth of the U.S. population living with HIV in 2010. The CDC estimates that by next year (2015), this number will double, which means that half of the people living with HIV in this country will be 50 years and older. There are several reasons why older Americans who are HIV+ may not be aware of their status:

  • HIV tests aren’t always included as part of the check up routine, and seniors tend to think they don’t know need to ask for one;
  • The signs of HIV/AIDS can be mistaken for the aches and pains of normal aging;
  • Older adults are less likely to discuss their sex lives or drug use with loved ones or a health care provider;
  • Myths and misinformation that lead seniors to believe that they are “too old” to get infected;
  • Lack of targeted public education*.

However, we should not only be concerned with reducing HIV infections among the older adult population.

Medical advances have allowed people with HIV who get treated— and stay in treatment— to lead longer, healthier lives. Yet, the success of these new treatments and the increased longevity of patients have led to new challenges to the proper prevention and care of older Americans living with HIV, especially those who are from diverse communities. There is a lack of research aimed at aging with HIV, as well as few prevention campaigns, clinical guidelines, demonstration projects and training initiatives targeting older adults living with HIV, particularly diverse seniors. While the Affordable Care Act does include provisions to support people living with HIV/AIDS, including older Americans, the public policy landscape is scarce when it comes to seniors and HIV/AIDS.

[Related content: Learn how the ACA is helping older Americans living with HIV.]

Older Americans with HIV are often excluded from major legislation, policy initiatives and programs— from the White House Conference on Aging, to the Older Americans Act and the Ryan White CARE Act, to the Medicaid expansion, and more.

Left unaddressed, generations of older adults with HIV/AIDS will lack the supports they need to age with dignity and in the best health possible. This is why the Diverse Elders Coalition in collaboration with ACRIA (AIDS Community Research Initiative of America) released 8 recommendations that have the potential of dramatically improving the lives of diverse seniors, and all older Americans, living with HIV.

What you can do on National HIV/AIDS and Aging Awareness Day

* To combat this, NHCOA is a partner of the CDC’s Act Against AIDS Leadership Initiative, which is focused on reducing the incidence of HIV/AIDS among diverse communities. Through culturally and linguistically appropriate, and age sensitive outreach and education, NHCOA conducts HIV outreach and education among Hispanic older adults and families to dissipate the stigma and silence.

Additional Resources

www.cdc.gov/hiv

www.aids.gov

www.hhs.gov/ash/ohaidp

www.aoa.gov/AoARoot/AoA_Programs/HPW/HIV_AIDS

Posted by Maria Eugenia Hernandez-Lane, Vice President of the National Hispanic Council on Aging (NHCOA). The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.

Salud y Bienestar: Helping Latino Seniors and Families Prevent and Manage Diabetes

Obesity is a foothold for chronic diseases, such as diabetes, posing a particularly serious health challenge for all diverse communities, including Hispanic older adults. Sadly, the number of Latino diabetics increases with age: one out of three Hispanic older adults suffer from the disease, which is often accompanied by related complications such as kidney disease, amputations, heart disease, high blood pressure, and nerve damage. While factors such as obesity predispose Latinos to diabetes, there are also myriad cultural, educational, linguistic, financial, and institutional barriers that keep Hispanics from being diagnosed in the first place. In fact, two of out every seven diabetics in the United States are undiagnosed. This is poses a significant health threat and challenge not only among families, but also in the realm of public health. Read More

Hepatitis, HIV and Older Americans: Get the Facts and Take Action

Diana Moschos - picBy Diana Moschos

World Hepatitis Day is one of four official disease-specific world health days

While viral hepatitis is the 8th leading cause of death in the world, it is a largely silent killer. Each year, the disease kills approximately 1.5 million people worldwide. In the United States, the CDC estimates 4.4 million people live with chronic hepatitis. However, most are unaware they are infected. Four years ago the World Health Organization designated July 28 as World Hepatitis Day to raise awareness and encourage action, especially among vulnerable and high-risk populations, including older Americans. Viral hepatitis is a life-threatening disease on its own, but often times it can be present along with other life-threatening infections, such as HIV. Read More

LGBT seniors face AIDS, limited housing options, isolation, discrimination and more

This seven part series by Matthew S. Bajko (m.bajko@ebar.com) originally appeared in the Bay Area Reporter/New America Media. Matthew explores a range of issues facing LGBT elders including aging with AIDS, isolation, limited housing options, discrimination on many fronts and a lifetime of struggle.

Trauma of AIDS Epidemic Impacts Aging Survivors

SAN FRANCISCO–The nightmares terrorized San Francisco resident Tez Anderson for years. He would dream he was buried deep underground and wake in the middle of the night feeling panicked.

Photo: Author and AIDS activist Sean Strub, left, with Let’s Kick ASS (AIDS Survivor Syndrome) co-founder Tez Anderson. (Rick Gerharter/Bay Area Reporter)

Photo: Author and AIDS activist Sean Strub, left, with Let’s Kick ASS (AIDS Survivor Syndrome) co-founder Tez Anderson. (Rick Gerharter/Bay Area Reporter)

“It felt like I was in a lot of danger. It was not so much about death, it was more that I was in peril,” recalled Anderson, who is 55. Read More

8 Ways the U.S. Must Prepare for More Seniors with HIV

This article by David Heitz originally appeared on HealthlineNews.com

On the eve of National HIV/AIDS Long-Term Survivors Awareness Day, a new report shows that the median age of Americans with HIV is 58 and that the the United States is woefully unprepared for a growing population of seniors with the virus.

By the end of 2010, more than 630,000 people in the United States had died from AIDS, according to the Centers for Disease Control and Prevention (CDC). At the end of 2009, more than 1.1 million people in the U.S. ages 13 and older were living with HIV. Some 80,000 of these people have been living with the disease for decades, and they are known as long-term survivors. Thursday, June 5, is National HIV/AIDS Long-Term Survivors Awareness Day. Read More

Aging and HIV: New Insights, New Recommendations

by Kira Garcia

In the early days of the HIV/AIDS epidemic, most people diagnosed faced death within a few years, if not sooner. Thirty years on, much has changed; HIV has become a more manageable chronic illness and many people are aging with the disease.

The proof is in these startling statistics: it’s predicted that 50 percent of people with HIV in the U.S. will be age 50+ by 2015—and by 2020, more than 70 percent of Americans with HIV are expected to 50+.

With that in mind, SAGE, the Diverse Elders Coalition (DEC) and ACRIA (AIDS Community Research Initiative of America) have created a report outlining eight recommendations to address the needs of a growing demographic of older adults with HIV, many of whom are LGBT and people of color. The full report, Eight Policy Recommendations for Improving the Health & Wellness of Older Adults with HIV, can be found online here. Read More

Health Benefits of Pet Ownership for Older Adults (National Minority Health Month)

In recognition of National Minority Health Month, the Diverse Elders Coalition is featuring stories relevant to the health disparities and health issues affecting diverse older adults during April. A new story will be shared every Wednesday with additional posts shared throughout the month. Be sure to visit diverseelders.org regularly during the month of April.

April is National Minority Health Month, and the theme for this year is “Prevention is Power: Taking Action for Health Equity.” There are a lot of things diverse older adults can do to prevent serious health problems. Eating a healthy diet, exercising, and having regular checkups from a health care provider can all help prevent serious health issues. Pet ownership can also help improve the health of older adults. For those who are able, walking a dog or just caring for a pet can provide exercise and companionship. Unlike dieting, exercising, and visiting health care providers, however, pet ownership does not require a high level of health literacy. Read More

10 Key Points to Know About Health Disparities among Asian American and Pacific Islander Elders (National Minority Health Month)

In recognition of National Minority Health Month, the Diverse Elders Coalition is featuring stories relevant to the health disparities and health issues affecting diverse older adults during April. A new story will be shared every Wednesday with additional posts shared throughout the month. Be sure to visit diverseelders.org regularly during the month of April.

April is National Minority Health Month. It is a great time to raise awareness of the health disparities that affect racial and ethnic minorities.

In the spirit of raising awareness, here are 10 important things you should know about health disparities among Asian American and Pacific Islander (AAPI) elders including some helpful resources from the National Asian Pacific Center on Aging (NAPCA): Read More

Do You Have Diabetes? – National Diabetes Alert Day

March 25 is National Diabetes Alert Day. It is an annual one-day, wake-up call to inform the American public about the seriousness of diabetes, particularly when diabetes is left undiagnosed or untreated and to encourage everyone to take the Diabetes Risk Test.

Diabetes is a serious disease with 1.9 million Americans diagnosed with diabetes every year. Currently ~26 million Americans have diabetes and another 79 million adults have prediabetes. 27% of diabetes is undiagnosed. If present trends continue, 1 in 3 American adults could have diabetes in 2050. Read More

A Video Review of Native American HIV/AIDS Issues

March 20 is National Native HIV/AIDS Awareness Day (NNHAAD). NNHAAD is a national effort to raise awareness about how HIV/AIDS affects American Indian/Alaska Native (AI/AN) and Native Hawaiian people and to promote testing.

An Overview

  • HIV infection affects AI/AN in ways that are not always apparent because of their small population size.
  • The rate of HIV infection is 30 percent higher and the rate of AIDS is 50 percent higher among AI/AN compared with white Americans, according to HHS’ Office of Minority Health.
  • Compared with other races/ethnicities, AI/AN have poorer survival rates after an HIV diagnosis.
  • AI/AN face special HIV prevention challenges, including poverty and culturally based stigma.

The following five videos give us a window into the HIV/AIDS crisis facing Native Americans. Read More

Women and HIV/AIDS: What about Older Adults, Women of Color, and Cancer?

March 10, 2014 is National Women and Girls HIV/AIDS Awareness Day (NWGHAAD). NWGHAAD is a nationwide effort to help women and girls take action to protect themselves and their partners from HIV – through prevention, testing and treatment. The HIV epidemic is rapidly aging with 17% of new HIV diagnoses in the U.S. occurring in those 50 and older. By 2015 the CDC expects half of the HIV infected population to be over 50. Older Americans are more likely than younger Americans to be diagnosed with HIV at a later stage in the disease. This can lead to poorer diagnoses and shorter HIV to AIDS intervals. And with HIV and age, comes cancer.

Statistics – An Overview Read More

Battle Misinformation and Stand Up for the Affordable Care Act (Black History Month)

In honor of Black History Month, the Diverse Elders Coalition is featuring stories relevant to black aging during February. A new story will be shared every Wednesday, with additional posts shared throughout the month. Be sure to visit diverseelders.org regularly during the month of February.

By Angie Boddie, Director of Health Programs at The National Caucus and Center on Black Aged, Inc.

Black history month reminds us that African Americans come from ancestors with a legacy of overcoming obstacles far and wide. Five decades since the oppressive days of Jim Crow, African Americans have a lot to celebrate— achievements in science, business, government, medicine, arts, sports, and a two-term elected president of the United States who delivered on his promise to provide universal healthcare to all Americans.

Affordable_Care_Act_100413Originally written with the premise of putting consumers back in control of their healthcare, the Affordable Care Act required all states to assist its residents by expanding their Medicaid program’s to their residents with incomes below $16,000 ($32,000 for a family of four), with the understanding that the federal government would foot most of the bill.

Upon enactment, opponents took dead aim at the legislation. Coining the Affordable Care Act “Obamacare”, opponents tirelessly worked to repeal and replace the law. Read More

Fund more Alzheimer’s studies, a high black risk (Black History Month)

In honor of Black History Month, the Diverse Elders Coalition is featuring stories relevant to black aging during February. A new story will be shared every Wednesday, with additional posts shared throughout the month. Be sure to visit diverseelders.org regularly during the month of February.

This article by Lewis W. Diuguid (ldiuguid@kcstar.com) originally appeared in The Kansas City Star

Since my mother died of Alzheimer’s disease in 1994, I always wondered as I attended fundraisers and events for caregivers why so many African Americans filled the rooms.

A recent study by John Hopkins University helps explain it. It shows that older African Americans are two to three times more likely to have Alzheimer’s disease compared with whites. That’s a new Black History Month concern for young African Americans and their elders whom new generations depend on for wisdom and advice. Read More

10 things Black Americans should know about HIV/AIDS (Black History Month)

In honor of Black History Month, the Diverse Elders Coalition is featuring stories relevant to black aging during February. A new story will be shared every Wednesday, with additional posts shared throughout the month. Be sure to visit diverseelders.org regularly during the month of February.

February 7th is National Black HIV/AIDS Awareness Day (NBHAAD). NBHAAD is an HIV testing and treatment community mobilization initiative for Blacks in the United States with four specific focal points: Get Educated, Get Tested, Get Involved and Get Treated.

Of special note to black older adults is that 17% of new HIV diagnoses in the U.S. occur in those 50 and older. Soon older adults will represent half of those in the U.S. infected with HIV and yet HIV+ black older adults often face rejection and feel discouraged from talking about the disease. The stigma and silence around HIV/AIDS in the Black community contributes to the rise of infections, later diagnoses, poorer prognoses and delayed treatment in black older adults. Read More

Focus turns to aging with AIDS

This article by Matthew S. Bajko (m.bajko@ebar.com) originally appeared in the Bay Area Reporter

Estimated percentage of the adult population (15 years and older) living with HIV which is aged 50 years or over, by region, by 2012. (Source UN.org)

Estimated percentage of the adult population (15 years and older) living with HIV which is aged 50 years or over, by region, by 2012. (Source UN.org)

As the global AIDS epidemic continues to age, greater focus is being paid to older adults living with HIV.

AIDS advocates are calling on service providers and health departments to tailor HIV prevention services, including HIV testing, to meet the needs of people aged 50 and above. And new guidelines for doctors with patients who have HIV are being released that highlight the need to focus on preventive care. Read More

As Parents Age, Asian-Americans Struggle to Obey a Cultural Code

This article by Tanzina Vega originally appeared in the New York Times

Savan Mok, a home health aide, assisting Oun Oy, 90, right, who had a stroke in 2012. Ms. Oy is from Cambodia and lives in Jenkintown, Pa., with her son and his wife, at rear. Jessica Kourkounis for The New York Times

Savan Mok, a home health aide, assisting Oun Oy, 90, right, who had a stroke in 2012. Ms. Oy is from Cambodia and lives in Jenkintown, Pa., with her son and his wife, at rear. Jessica Kourkounis for The New York Times

SOUDERTON, Pa. — Two thick blankets wrapped in a cloth tie lay near a pillow on the red leather sofa in Phuong Lu’s living room. Doanh Nguyen, Ms. Lu’s 81-year-old mother, had prepared the blankets for a trip she wanted to take. “She’s ready to go to Vietnam,” Ms. Lu said.

But Ms. Nguyen would not be leaving. The doors were locked from the inside to prevent her from going anywhere — not into the snow that had coated the ground that day outside Ms. Lu’s suburban Philadelphia home, and certainly not to her home country, Vietnam. Read More

In the Crosshairs of Health Disparities: Older Latinos, HIV and Depression

December 1st is World AIDS Day

By Mark Brennan-Ing, PhD, Director for Research and Evaluation, ACRIA Center on HIV and Aging

Latinos are the largest and fastest growing ethnic group in the U.S., and comprise 17% of the population. They are often viewed as a monolithic group by mainstream culture. However, the term Latino, referring to people of Mexican, Central American, and South American origins, encompasses great diversity with regard to nationality, immigration history, language use, educational and occupational opportunities, and socio-economic position. These aspects of diversity also serve as indicators of social-structural determinants of health disparities (or differences in how often a disease affects people). How these social-structural determinants of health affect the lives of older Latino adults help us to better address the needs of this population. Understanding health disparities also provides insight into challenges faced by diverse elders from a variety of racial, ethnic and cultural backgrounds who deal with many of these same issues. The intersection of HIV/AIDS and depression among older Latinos will be used to illustrate how these social-structural determinants affect the health and well-being of a diverse aging population.

Double Jeopardy: HIV and Depression

Latinos are disproportionately affected by HIV/AIDS. The overall HIV prevalence rate for Latinos is nearly three times the rate for whites. Further, Latinos are the most likely to be classified at Stage 3 (i.e., AIDS) at the time of their HIV diagnosis (48%), as compared with whites (42%) and blacks (39%). Due to successful anti-retroviral therapy, by 2015 more than half of those with HIV in the U.S. will be 50 years or older, a proportion that will rise to 70% by 2020. The disparity in HIV prevalence is amplified among older people with HIV/AIDS. Among Latinos who are 50 and older, HIV prevalence is five times that of older non-Hispanic whites. In addition, older Latinos have a 44% increased risk for major depression and are more likely to present with clinically significant depressive symptoms compared with older whites. This syndemic (convergence of two disorders that magnify the negative effects of each) of HIV and mental distress among Latino older people with HIV (“OPWH”) is an important public health concern since the most consistent predictor of HIV treatment non-adherence is depression, and only 26% of Latinos with HIV achieve the clinical goal of viral suppression. Read More

Webinar Recording: Why the Affordable Care Act Matters to Diverse Older People

The health coverage expansions under the Affordable Care Act (ACA) will affect you, your loved ones and your communities. The Diverse Elders Coalition represents millions of diverse older people age 50+ who are among those affected: they include the Health Insurance Marketplace, the Medicaid expansion, new benefits for elders 65+ on Medicare, and a range of protections that make health care more accessible for lesbian, gay, bisexual and transgender (LGBT) older people and older people of color. The number of uninsured older adults age 50-64 continues to rise—from 3.7 million in 2000 to 8.9 million in 2010. In addition, people of color make up more than half of uninsured people in the U.S.— and research shows that people of color, across the age span, face significant disparities in physical and mental health. Additionally, many people of color delay care because of potential medical costs and out of fear of discrimination or cultural incompetence from medical providers. This webinar highlights both national and state-specific examples on what is being done to ensure that older people know about the changes that are taking place under the ACA and how it affects them.

Speakers: Yanira Cruz, President and CEO, National Hispanic Council on Aging; Michael Adams, Executive Director, Services and Advocacy for GLBT Elders (SAGE). Special thanks to our co-sponsors, The John A. Hartford Foundation and The California Wellness Foundation.

Original Webinar date: Wednesday, November 6, 2013.

Watch it at http://www.screencast.com/t/yzeTQbgEze2.

Our Issues Entwine: LGBTQ Aging and Economic Justice

MY IMMIGRANT MOTHER sits silently in a room the size of a small kitchen. Earlier this year, she survived multiple failures of the heart, kidneys, and limbs over the course of six weeks. She is seventy-three, uses a wheelchair, and for the first time in her life is surrounded by white people who do not speak Spanish, in the only nearby nursing home my parents can afford. In turn, my father drives through the days confronted by three omnipresent realities: hour-long daily visits with my mother, a night shift to keep him mentally and financially afloat, and a mailbox flooded with health care bills, insurance disputes and the complexity of navigating Medicare, Medicaid, and private insurers. When I speak of health reform, queer rights, or racial and economic justice, he gazes at me solemnly. He survived a lifetime of racial discrimination, fought in two wars and lived through the ensuing decades with a cacophony in his psyche. At seventy-eight, nearly blind and deaf, he will hear nothing of systems and reform. More often than not, these days we sit in silence.

This silence haunts me as an advocate who works at the intersection of aging and lesbian, gay, bisexual, transgender, and queer (LGBTQ) rights. The aging and LGBTQ advocacy fields often propose policy solutions that are too narrow to address the complexity of how all marginalized people — including heterosexual people of color such as my parents, members of the LGBTQ community, and more — experience the process of aging. We need social transformations that address the intersecting forms of oppression that older people face — and that can make sense of the chaos and silence that shroud my parents. This has become especially clear to me through my work as the director of a national policy program devoted to improving the health and well-being of LGBTQ older people.

A closer look at the lives of aging LGBTQ people reveals how deeply identity politics and class politics are entangled. Here, an older protester rallies for marriage equality in Pasadena, California.

A closer look at the lives of aging LGBTQ people reveals how deeply identity politics and class politics are entangled. Here, an older protester rallies for marriage equality in Pasadena, California.

For the full essay, which originally appeared in Tikkun Magazine click here

WEBINAR: Why Obamacare/the Affordable Care Act Matters to Older People of Color and LGBT Older People

When: Wednesday, November 6, 2013 2-3pm EST
Register Now: http://bit.ly/1c0l5zd
Speakers: Dr. Yanira Cruz, President and CEO, National Hispanic Council on Aging (NHCOA)
Michael Adams, Executive Director, Services and Advocacy for GLBT Elders (SAGE)
Who can attend? Advocates. Policy makers. Older Adults. Funders. Anyone interested in learning more about Obamacare and how it affects diverse older people. *There will also be additional information for funders on how they can support both national and state-specific work.

First 30 Minutes: Conversation with Dr. Cruz and Michael Adams about why Obamacare/the Affordable Care Act Matters to diverse older people. Learn about the opportunities, challenges and lessons learned.
Second Half of the Conversation: Dr. Cruz and Michael Adams will take your questions.

WEBINAR DESCRIPTION
The health coverage expansions under the Affordable Care Act (ACA) will affect you, your loved ones and your communities. The Diverse Elders Coalition represents millions of diverse older people age 50+ who are among those affected by these expansions. They include the Health Insurance Marketplace, the Medicaid expansion, new benefits for elders 65+ on Medicare, and a range of protections that make health care more accessible for lesbian, gay, bisexual and transgender (LGBT) older people and older people of color. The number of uninsured older adults age 50-64 continues to rise—from 3.7 million in 2000 to 8.9 million in 2010. In addition, people of color make up more than half of the uninsured people in the U.S.— and research shows that people of color, across the age span, face significant disparities in physical and mental health. Additionally, many people of color delay care because of potential medical costs and out of fear of discrimination or cultural incompetence from medical providers. These issues are especially true for LGBT people of color who face challenges on multiple aspects of their identities. The ACA has the ability to create a path to better health by offering more affordable health insurance options, improving services and eliminating the usual obstacles. This webinar will highlight both national and state-specific examples of what is being done to ensure that older people know about the changes that are taking place under the ACA and how it affects them.

This webinar is in collaboration with Grantmakers in Aging (GIA) as part of their “Conversation with GIA” series.

Special thanks to our co-sponsors, The John A. Hartford Foundation and The California Wellness Foundation.

National HIV/AIDS and Aging Awareness Day

September 18 marks the annual National HIV/AIDS and Aging Awareness Day, a day to shine a spotlight on HIV/AIDS and its impact on the aging body. The Diverse Elders Coalition and our member organizations know well that this disease greatly affects our nation’s older people. In fact, adults 50 years of age and older make up the fastest growing population with HIV, and by 2015, more than half of Americans living with HIV/AIDS will be over 50.

While individuals with HIV/AIDS are living longer lives, older adults have more than three other (usually chronic) health conditions in addition to HIV versus their age peers without HIV. As a result, they have a host of health and services needs that neither HIV nor aging services providers are fully prepared to meet. Yet older adults have rarely been targeted in HIV/AIDS prevention and awareness campaigns. As a result, many do not realize that their behaviors can put them at risk for HIV infection. Additionally, health care providers may mistakenly assume that older patients are no longer engaged in high risk behaviors, and therefore do no initiate conversation about the importance of using protection and getting tested regularly.

This is why representatives from our member organizations SAGE (Services & Advocacy for GLBT Elders) and NHCOA (National Hispanic Council on Aging) are at Capitol Hill today for a briefing, reception and hearing to highlight the needs and challenges of older adults with and at risk for HIV. You can follow what happened and get live updates by following @nhcoa and @sageusa on Twitter. Read More

ACA: A Big Help to HIV+ Older Adults

There are only 41 days left until open enrollment begins under the Affordable Care Act’s (“ACA’s”) Health Insurance Marketplace. Starting October 1st individuals can enroll in insurance plans for coverage beginning on January 1, 2014. The Marketplace brings a range of options to HIV+ people for high quality insurance at lower costs.

How the Marketplace Works GIF
All private health insurance plans offered in the Marketplace will offer the same set of essential health benefits. These benefits include areas of significant importance to HIV+ people such as prescription drugs, lab services and chronic disease management. Without the ACA, private insurance options have varied widely from limited or no coverage in some states to very expensive comprehensive coverage in other states. For example, in New York where there are no exclusions for pre-existing conditions such as cancer, diabetes, heart disease or being HIV+, individual HMO coverage with a major insurer currently costs $1,409 per month. This price point can be extremely unaffordable for many HIV+ older adults. As the ACA is implemented in January 2014, “gold” level coverage from the same insurer will cost $688 per month. That’s $721 less a month or $8,652 more a year in an HIV+ older person’s pocket. For HIV+ older people, the Health Insurance Marketplace is yet another major benefit of the Affordable Care Act. Read More

CALL FOR STORIES: Elders, healthcare and chronic conditions

StoryCorps, the national interview project affiliated with the Library of Congress and NPR, is looking for stories about elders and healthcare.

Two StoryCorps participants after an interview.

Two StoryCorps participants after an interview.

StoryCorps producers are hoping to speak with: Elders who are living with multiple chronic conditions who can talk about the complications of coordinating care (or family members/caregivers who can talk about the complications of caring for an elder in that situation). These stories are being recorded in partnership with Atlantic Philanthropies (AP). AP supports the work of both StoryCorps and the Diverse Elders Coalition. One of the stories will later be showcased on the Atlantic website to help bring attention to elders and their healthcare experiences.

kathrina-proscia

Inside StoryCorps interview booth.

Read More

Alzheimer’s Disease Among Hispanic Older Adults

Over the past several months, the National Hispanic Council on Aging (NHCOA) has conducted focus groups to learn about what Hispanic older adults and caregivers know about Alzheimer’s disease (AD).  We found that people have a wide variety of beliefs about what causes the condition and how to prevent it.  We also heard the insights of caregivers for people with AD.  While there is no known cure or prevention measure for AD, caregivers can pass on advice and teach other caregivers how to cope with the stress of providing care.

 “I would have her tested to be able to help her better, and have a better life for me and all of those who live at home.”

“The doctor told me that she didn’t have Alzheimer’s-she said, who was I to tell her that? After examining her, the doctor admitted that she had early signs of Alzheimer’s.”

“For those of us who love our family members, I believe we have to give them a hand, take them to a doctor, have tests done-because in its early stages, maybe life is better for those who take care of them.” Read More

The Re-launch is here!

Two weeks ago, we announced that we would be re-launching the Diverse Elders Coalition Blog.  Read here to find out more.

We are thrilled that this day has finally come. As we previously promised, in addition to our regular contributing bloggers, we will have exciting guest bloggers.  We will also display our content in a variety of different ways (e.g., pictures, videos, interviews, Top 5 columns, etc.) And much more! Have a suggestion? Contact us.

You can bookmark this page or subscribe to our RSS feed to stay updated. Check back on Wednesday to read our latest post, courtesy of National Hispanic Council on Aging (NHCOA). Until then, enjoy some highlights from the blog’s history:

1) Watch Our Story

2) The Unique Needs of Asian American and Pacific Islander Elders

3) 10 Considerations for Working with the Diversity of Older LGBT Latinos

We are Re-launching On March 18!

The Diverse Elders Coalition (DEC) was founded in 2010, and in July 2012 we launched our official website, which also serves as a news and commentary blog on the social, political and economic issues affecting the growing yet vulnerable demographic of elders who are Black, Hispanic, Asian/Pacific Islander, American Indian/Alaska Native, and lesbian, gay, bisexual and/or transgender (LGBT).In the last eight months, we have put out numerous posts on the issues that affect our communities and the creative ideas and best practices to address them. In the summer of 2012, we also released Securing Our Future: Advancing Economic Security for Diverse Elders, a resource that describes the issues facing elders of color and LGBT elders, who together will represent a majority of older adults in the United States by 2050.

In this time, we have received some wonderful comments on our work, as well as helpful feedback from our readers (all of you) on how to improve the site to better meet your needs—and we listened to you. Members of the Diverse Elders Coalition came together and crafted an exciting plan for moving forward by implementing many of your ideas, which you’ll see starting with our blog re-launch on March 18.  Here are some of the improvements to look forward to:

  • In addition to our regular contributing bloggers, we have some exciting guest bloggers scheduled!
  • Content displayed in a variety of ways (e.g., pictures, videos, interviews, Top 5 columns, etc.)
  • More news and original content from coalition members
  • And more!

 

As we look forward to March 18, please like us (and tell a friend!) on Facebook to stay updated on the events surrounding the launch and the latest news affecting diverse elders. If you have any questions about DEC or would like to submit an idea for a blog post, please contact us.

See you on the 18th!

To learn more about DEC members, click here.

HIV/AIDS is Still an Issue for Older Gay Black Men

In honor of Black History Month, the SAGE Blog will feature a post on LGBT aging in the black community every Thursday during the month of February. February 7 is National Black HIV/AIDS Awareness Day, so our first post in the series is on HIV/AIDS in the black community by Ty Martin, Community Liaison at SAGE Harlem.

Ty Martin & SAGE Constituent Sherman Walker

Ty Martin & SAGE Constituent Sherman Walker

I am black.  I am gay.   I am an older adult. 

I am resilient. And so is my community.

 

I grew up during the civil rights movement, seeing powerful black activists around me fight for our civil rights as a people.  I also grew up during the Stonewall Riots, feeling the hostility society harbored toward lesbian, gay, bisexual and transgender (LGBT) people.  And I grew up during a time when I lost many loved ones due to HIV/AIDS, a disease that was viewed by the world as a critical epidemic.

Now it’s 2013. Today as a black gay man, I enjoy more freedoms and rights (as a New Yorker, I have the right to marry my long-term partner Stanton). Yet, for older black gay men who are living with HIV/AIDs, it’s still a difficult journey.

Continue reading this article>>>