When Your Partner is Struggling with Addiction

When Someone You Love is Struggling with Addiction

It’s tough enough when a friend has a problem with drugs or alcohol. It’s even more complicated when your partner does. It’s simply harder to see things objectively or to separate yourself from the effect of your partner’s addiction when you’re so emotionally, physically, and often financially intertwined. He needs help, and you need help. So who’s left to help the relationship? Can we both get through this together?

This article offers some insight and advice on how to support your partner, yourself, and your relationship through this difficult period. Perhaps it will also validate your own experiences and even offer some hope. Before going further, however, it may be useful to read When Your Friend Has a Drug or Alcohol Problem for an overview of addiction, the recovery process, and effective helping strategies.

THE COURSE OF ADDICTION ON RELATIONSHIPS

Although every intimate relationship is certainly unique, predictable patterns often emerge when addiction joins the partnership. As addiction develops and evolves, most couples experi-ence parallel changes in how their relation-ship feels and functions. The common progres-sion looks something like this:

Explanations: Early in the development of the addiction, you and your partner explain away his occasional episodes of excessive drug use or drinking. You may attri-bute them to unusual stress at work or a birthday celebration gone too far, for example. Although the events come and go, your anger, embar-rassment, or disappointment may start to build up.

Doubt and distrust: Soon you realize that your partner’s drug use/drinking is not normal, and you begin to pressure him to be more careful, cut down, or quit. This can be especially difficult if you both drank or used drugs together, you now stop, but your partner doesn’t. In this case, your partner might see the problem not as his own substance abuse but as your sudden attitude reversal towards this once shared activity. Regardless, you now become the bad guy or the nagging mother in the relationship.

At the same time, you try to hide his problem from the outside and keep up a good front,which can become exhausting over time. You may notice more negative emotions creeping in. Where is he? He’s hungover and now I have to do all the yard work. What is he doing all night? I hate that I don’t believe him. As resentment and distrust emerge, so too might the apologies and promises not to let it happen again. You forgive again because you love him.

Crisis: Now you can no longer pretend everything is OK, and you spend much of the time going from crisis to crisis. Life seems quiet for a while. Then all of a sudden – another binge, another chunk of money gone, another 3-day disappearance, another lie that’s backfired. The emotional roller coaster consumes your energy. You may feel helpless and unable to control the emotional or practical chaos of your own house-hold. At this point, you might start seeking outside help.

Sex can become a central and divisive issue, particularly when crystal meth is involved. A common scenario goes like this: Your sex life starts to shrivel up, he starts having sex outside the relationship or going beyond the agreements in your “open” relationship. You may feel ignored sexually or even feel manipulat-ed if your partner uses sex to “make up” for something he’s done or to prove he loves you even though he’s acting like an ass. Ultimately, sex can become some-thing to avoid, withhold, or use as emotional leverage.

If you’re worried that his sexual activ-ity might bring home HIV or an STD, start insisting on condoms, having less anal sex and getting tested more frequently. Many men take greater sexual risks when under the influence, so your concerns are certainly valid. Do what you need to protect yourself.

Coming to terms: Your coping abilities eventually become stronger and now you clearly see the addiction. You gradually assume a larger share of the responsibility for the home, friend/family commitments, and taking care of your own needs. You become more resilient to his lies and denial and less guilty for not getting pulled into them.

This period sometimes becomes the “ultimatum phase.” You want to help, you want to stick by him, but you can’t do it unconditionally. Many partners set new limits (or at least stop adjusting old ones) and begin to envision a possible change or end to the relationship.

Disentangling: At this point, the “we” evolves into “you and me” as you begin to see yourself more separately from your partner or his addiction. Many turn to counseling, with or without their partners, in attempts to either arrest the addiction or deal with its consequences. It may be useful to work with a coun-selor with specialized experience in addiction and for each partner to see his own therapist outside of couples counseling.

Should I leave? becomes a common question here. How long do I try and how far do I go to help until I just can’t anymore? Clearly, the answer is different in each relationship, but there are two situations in which you should strongly consider separation, even if only temporarily:

  1. Your partner’s addiction is making you sick as well and you are no longer the person you used to be. Perhaps you see yourself more depressed, withdrawn from friends, not doing the fun hobbies you used to, or having prob-lems at work because you’re so distracted.
  2. Your own financial, physical, or legal security is in jeopardy. Physical or sexual violence should never be tolerated.

Addiction can have cata-strophic legal and financial consequences. Watch out for deep trouble spots and take steps to protect yourself as much as possible. Distancing yourself can be tricky, of course, if you co-own a house, bank account, or other assets, but it is even more critical in these cases. Co-ownership is also an emotional symbol of trust and commitment in most relationships. Talk to a legal or financial professional for objective advice.

Some men feel a lot of social pressure to stay in a relationship. They don’t want to appear too “heart-less,” or they worry what friends might say if they jump ship too soon. And what do you do about all the friends you and your partner share? What if you adore his family and they adore you? This is where trust-ing your instincts is important.

Too many guys have prolonged painful relationships by not believing their own sense that something is wrong. There are so many ways to talk yourself out of your own gut feelings. Maybe I’m overreacting. He said he didn’t get high last night. Well I acted like a jerk too. But no matter what your partner says or what your own head says, your gut will always know when something doesn’t feel right. Listen to yourself, trust yourself, believe yourself. If something feels wrong, it probably is.

Reorganizing: You either reconcile with your partner in his recovery or restructure your life without him.If the relationship ends, it doesn’t mean you didn’t try hard enough to make it work. Or that you didn’t do the right things along the way. The responsibility for the relationship lies equally between you. He is responsible for his addiction and for its consequences on others. That may not lessen your sense of loss, betrayal, or anger, but it may help you move forward knowing that the decision to leave was at least the right one for you.

You may or may not be able to con-trol the course of addiction on your relationship. But you might feel more in control if you can step back, see what is happening, and take steps to manage the challenges facing you in the moment. Just knowing that the doubt, confusion, frustration or despair you may be feeling are common and even predictable might help you regain perspective and cope more steadily.

TAKING CARE OF YOURSELF

How are you coping? Are you drinking or smoking more? Missing work? Pulling away from friends because you’re too caught up in stress at home, trying to hide your partner’s addiction, or thinking they just don’t want to hear you gripe about it anymore? These are all warning signs that you are starting to lose yourself in the dust cloud of your partner’s substance abuse.

Taking care of yourself might mean signing up for a class, getting together regularly with close friends, seeing a therapist or finding an on-line support group. You cannot help your partner or your relationship if you yourself are falling apart.

TREATMENT AND LIFE AFTERWORDS

Once the recovery process begins, your partner will go through a lot of changes. Mood swings, shifts in personality and physical energy, and more mood swings. He may even start talking funny, using new words and phrases he’s picked up in treatment. This is generally a very hopeful and promising time, one that requires a lot of personal effort and help from others.

Your partner may be spending a lot of time at support group meetings and making new friends who are also in recovery. While you may feel happy that he is making such progress, you might also feel a bit jealous of his new recovery friends upon whom your partner might rely more for support than you. “How can they understand you better when we’ve been together so long?” You’re not being replaced. Only people with addic-tion can really “get it,” and that insight and shared experience are extremely supportive in recovery.

After treatment, you may feel anxious to get back to normal or to feel like you deserve a little more attention after all you’ve been through to support him. But again, you will have to be patient. Understand that he really does need time in early recovery to stay very focused on his own needs to avoid relapse. Having said that, don’t be afraid to express your feelings honestly. Part of recovery is learning how to communicate about emotions in an open, respectful way. Your reward of a better, more loving relationship is coming.

WILL OUR RELATIONSHIP CHANGE AFTER TREATMENT

Yes. Most couples do not return to their lives as if nothing has happened. On the positive side, you may see improvement in communication: more openness, more honesty, more frequency, more sincerity. Most people emerge from treatment looking forward to a “fresh start” and to making important changes. Of course you’ll want to share in this optimism.

But you were likely the one he hurt the most, and that pain doesn’t heal right away. It is normal to feel conflicted about your partner’s post-treatment return to your life. On one hand you’re glad to see him and glad he’s doing better, but on the other hand, you remember the stream of broken promises, deception, and bullshit. This conflict will take time to resolve. Don’t pretend it isn’t there. Talk about it if you feel it.

Perhaps the hardest part of rebuild-ing relationships is rebuilding trust. Of course he wants to make changes, to make it up to you, to be a better partner. But he has probably said that countless times before, so why would now be any different? Again, this caution is something almost all partners feel. All the hope-ful words do not mean as much as real, tangible actions. And without a doubt, that first time he doesn’t show up for something or doesn’t call when he said he would, you’ll probably wonder right away if he is drinking or using again. This is all very typical.

A FINAL WORD

After reading this, you may get the impression that the odds of your relationship surviving or even flourishing after addiction are against you. That’s not always the case. Many partnerships strengthen through these challenges, and yours might too. But it takes hard, hard work on the part of both partners to get there. In either event, you will emerge with a better understanding of yourself and of what you want and need in a relationship. And this deeper awareness will help bring more authenticity and more fulfillment to this partnership or to the next

Authored by Susan Kingston, Educator Consultant with the Drug Use and HIV Prevention Team, Public Health – Seattle & King County. susan.kingston@metrokc.gov

Photograph by Nathan Rupert

Kayla Quimbley Joins Presidential Advisory Committee on HIV/AIDS

Kayla Quimbley

On August 4, 2021, Assistant Secretary for Health, Dr. Rachel Levine, swore in eight new members to the Presidential Advisory Council on HIV/AIDS (PACHA), one of the newest members being Kayla Quimbley, a Georgia Equality Youth HIV Policy Advisor and youth HIV advocate.

Quimbley, as a Youth HIV Policy Advisor, is trained on policy and advocacy while being equipped with the resources needed to educate state, city, and county-level policymakers around the creation of meaningful HIV- related laws and strategy.

According to www.hiv.gov, “The PACHA provides advice, information, and recommendations to the Secretary of Health and Human Services regarding programs, policies, and research to promote effective prevention, treatment, and cure of HIV disease and AIDS. This includes recommendations to the Secretary regarding the development and implementation of the Ending the HIV Epidemic in the U.S. initiative and the HIV National Strategic Plan.”

As a member of Advocates’ Engaging Communities around HIV Organizing (ECHO) council and as a National Youth HIV AIDS Awareness Day Ambassador, Quimbley is utilizing her skills, and lived experience, to eradicate HIV stigma, reduce the number of new HIV transmissions, and directly influence policy change.

Quimbley has dedicated herself to raising awareness of how HIV disproportionately impacts youth of color and continuously works to ensure that youth have access to medically accurate information.

Georgia Equality celebrates Kayla Quimbley for her dedication and is a true inspiration. We know she will be an assest to the PACHA.

National LGBTQ+ Women’s Survey

National LGBTQ+ Women's SUrvey

A message from the organizers of the National Women’s Survey:

Take the survey now at: www.lgbtqwomensurvey.org

What is the Survey and who is it for?

We strive to create a platform for the wide range of experiences we know exist among lesbian/bi/transleasbian/nonbinary/queer/intersex people.  We welcome lesbian, bi, pansexual, trans, intersex, asexual, and queer women who partner with women; trans men who want to report on their experience of partnering with women when they identified as or were perceived to be girls or women; and non-binary people who partner with or have partnered with women.

Who is doing this project?

I initiated this project and have been working to launch it for over two years.  It is done under the umbrella of Justice Work, a nonprofit think tank, and is supported by many leading LGBTQ funders and partner organizations (see list on website).

You’ll recognize a lot of the members of our Advisory team as veteran queer, racial justice activists and researchers including political scientist and researcher Cathy Cohen; HIV researcher Tonia Poteat; Zami Nobla Founder Mary Anne Adams; US Transgender Survey director, Sandy James; Williams Institute’s leading scholars Bianca Wilson and Lee Badgett; founder of the Social Justice Sexuality Project at CUNY, Juan Battle; bisexual and feminist leader Loraine Hutchins; trans legal scholar and organizer Dean Spade, among others. 

Our research team is led alongside me, by Dr. Jaime Grant (who co-authored the first National Transgender Discrimination Study); Dr. Alyasah Ali Sewell, Director of the Race & Policing Project at Emory University, who leads work on developing quantative approaches to racism studies and addressing racial health disparties; and Dr. Carla Sutherland, who has done groundbreaking work in global LGBTQ human rights and research

What’s unique about this survey?  

This is a first-of-its-kind, national grassroots community survey of LGBTQ+ women/womxn who partner with women.  

It is a study that will capture nuance and queer fabulousness as we catalogue our identities, life experiences, survival strategies, kinship structures, partnerships, and families.

We hope it will become the largest dataset of LGBTQ+ womxn’s experiences in the country and in the world. 

We are asking your help in three ways:

1.  Please take the survey and share with your friends and communities to which you are connected.  A total of 30-40 minutes to take the survey could help change movement priorities and mainstream ideas about LGBTQ+ wimmin.  You can go to the website, www.lgbtqwomensurvey.org or use this direct link:  www.lgbtqwomensurvey.org/survey

2.  We ask CenterLink and its members to please post about this survey to your social media accounts, and to consider emailing the link for the survey to your email lists.  Attached are two graphics you can use for facebook and Instagram.

3. Please consider sharing an article or blurb about the survey in your newsletters, podcasts, publications and other materials that you share with our communities that may be coming out in the fall of 2021 (the survey is open until December).  Our team would be happy to do interviews or write op-eds if that is helpful! 

Take the survey now at: www.lgbtqwomensurvey.org

Positive Thoughts: The Activist Doctor

Demetre Daskalakis

Demetre Daskalakis, MD, MPH, is tackling HIV prevention nationally
By Alicia Green

Demetre Daskalakis, MD, MPH, remembers the day he felt called to become an HIV doctor: April 23, 1995. He was a college student working on a display for the AIDS Memorial Quilt when he witnessed people paying homage to their lost loved ones.

“I remember saying, ‘My job is to not let anybody get sick or die from HIV/AIDS,’” says Daskalakis, the director of the Division of HIV/AIDS Prevention at the Centers for Disease Control and Prevention (CDC).

But Daskalakis, 47, is not your average doctor — he’s also a gay activist with strong ties to the LGBTQ+ community.

“When I realized that the single largest health threat to my community was HIV, the intersection became really clear for me,” Daskalakis explains. “It’s important and possible to be both a physician and an activist and to work in government and have an activist heart.”

For eight years, he was an attending physician at the New York University School of Medicine before serving as the medical director of three HIV clinics at Mount Sinai hospital.

In 2014, Daskalakis joined the New York City health department as assistant commissioner of HIV/AIDS prevention and control, his first job in public health.

Daskalakis was promoted to deputy commissioner of disease control in 2017. During his three years in that role, he led NYC’s “Ending the Epidemic” initiative and helped reduce HIV diagnoses to a historic low.

Having effectively reduced HIV transmissions and deaths in America’s largest city, Daskalakis is now tackling HIV at the national level. Since December 2020, Daskalakis has led HIV prevention efforts at the CDC. He aims to apply what he learned in New York City to the epidemic across the country.

Health equity is top of mind for Daskalakis. He plans to identify ways to improve HIV outcomes for all by interrupting racism, sexism and other isms. Additionally, as the senior COVID-19 data and engagement equity lead at the CDC, he has been tasked with ensuring a fair and equal distribution of COVID-19 vaccines. 

“We also want to really identify ways that we can cross-link HIV with STDs [sexually transmitted diseases] and viral hepatitis as well as mental health and drug user health to be able to achieve a more global approach to addressing syndemics,” he explains.

Daskalakis also hopes to eliminate the divide between people living with HIV and those who could benefit from prevention strategies through what he calls “status-neutral care” — giving patients the same initial treatment and care regardless of HIV status.

“The status-neutral framework is addressing stigma at its root,” he says. “Let’s not worry about building a service based on a test result. Let’s worry about who the people are and what we can do to make them comfortable getting services and care.”

Despite being called a “radical doctor” (for doing outreach at sex clubs, for example), Daskalakis insists that what makes him stand out in the fight against HIV is his love for the communities affected by the virus.

“All I’ve ever done is listen and learn,” Daskalakis says. “When you listen to the community and the science and figure out how to marry them, really good things happen.”

Alicia Green is an assistant editor for POZ. This column is a project of TheBody, Plus, Positively Aware, POZ and Q Syndicate, the LGBTQ+ wire service. Visit their websites http://thebody.com, http://hivplusmag.com, http://positivelyaware.com and http://poz.com for the latest updates on HIV/AIDS.

5 Steps to Help Prevent Suicide

5 Steps to Help Prevent Suicide

Suicide is an important public health issue for all communities, but especially for the LGBT community. The American Foundation for Suicide Prevention reports that “in recent years studies have indicated a higher prevalence of suicide attempts among lesbian, gay, bisexual and transgender people.” (the full report is available here)

Knowing how to help others gives us confidence to reach out and connect with people who seem to be hurting or having difficulties. Here are 5 simple steps one can take that may ultimately save someone’s life.


Ask: “Are you thinking about killing yourself?” It’s not an easy question but studies show that asking at-risk individuals if they are suicidal does not increase suicides or suicidal thoughts.

Keep them safe: Reducing a suicidal person’s access to highly lethal items or places is an important part of suicide prevention. While this is not always easy, asking if the person has a plan and removing or disabling the lethal means can make a difference.

Be there: Listen carefully and learn what the individual is thinking and feeling. Findings suggest acknowledging and talking about suicide may in fact reduce rather than increase suicidal thoughts.

Help them connect: Save the National Suicide Prevention Lifeline’s number in your phone so it’s there if you need it: 1-800- 273-TALK (8255). You can also help make a connection with a trusted individual like a family member, friend, spiritual advisor, or mental health professional.

Stay connected: Staying in touch after a crisis or after being discharged from care can make a difference. Studies have shown the number of suicide deaths goes down when someone follows up with the at-risk person.

This resource was created by the Center for the Study of Traumatic Stress, and adapted from the National Institute of Mental Health

Alzheimers and Dimentia in the LGBTQ Community

Alzheimers & Dimentia in the LGBTQ Community

New research reported at the Alzheimer’s Association International Conference (AAIC) 2019 in Los Angeles found higher rates of subjective cognitive decline among lesbian, gay, bisexual and/or transgender (LGBT) Americans compared to their cisgender* heterosexual counterparts. In the study, subjective cognitive decline (SCD) was defined as self-reported confusion or memory problems that have been getting worse over the past year.

Another study presented at AAIC 2019 investigated the effectiveness of a first-of-its-kind Alzheimer’s intervention designed specifically to improve physical function and independence for LGBT older individuals with dementia and their caregivers. The study, conducted by researchers at the University of Washington, showed the importance of tailored interventions and strong community partnerships in designing care for LGBT individuals.

“Much too little is known about Alzheimer’s disease and dementia in the LGBT community. In fact, the first data on the prevalence of dementia among sexual and gender minorities was reported only last year at AAIC 2018,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer.

“As expanding research efforts continue to teach us more about the variability of Alzheimer’s and other dementias — for example by sex, race, genetics and exposure to environmental factors — the Alzheimer’s Association will fund, and encourage others to fund, more studies in LGBT and other diverse populations,” Carrillo added.

Increased Risk for Subjective Cognitive Decline Among Sexual and Gender Minorities
Few studies have investigated the symptoms and disease progression of Alzheimer’s and other dementias in the LGBT community. To examine these associations, Jason Flatt, PhD, MPH, assistant professor at the Institute for Health & Aging at the University of California, San Francisco, and colleagues analyzed data from the 2015 Behavioral Risk Factor Surveillance System (BRFSS), a large phone-based survey led by the Centers for Disease Control and Prevention.

The study analyzed data from 44,403 adults aged 45 and older across nine states in the U.S. (Georgia, Hawaii, Illinois, Minnesota, Nevada, Ohio, Virginia, West Virginia and Wisconsin) that participated in the 2015 BRFSS optional modules on the Healthy Brain Initiative, which included subjective cognitive decline and Sexual Orientation and Gender Identity. Roughly three percent of participants (1,253) identified as a sexual or gender minority (SGM). Subjective cognitive decline was defined as self-reported confusion or memory problems that have been getting worse over the past year.

The researchers found that more than 14% of SGM participants reported subjective cognitive decline, significantly higher (p<0.0001) than the 10% rate among cisgender heterosexual participants. Even after adjusting for factors such as income, age and race, SGM participants were 29% more likely to report subjective cognitive decline. More research is needed to understand why subjective cognitive decline may be higher in SGM individuals.

“Given that 1 in 7 adults who identified as a sexual or gender minority reported subjective cognitive decline, it is critical that more opportunities exist for people in these communities to receive regular evaluation for cognitive impairment and Alzheimer’s disease,” Flatt said. “There is also a need for greater education on Alzheimer’s risk, signs and symptoms, and training of health care providers to ensure inclusive and welcoming care for LGBTQ+ populations.”

“While we do not yet know for certain why sexual or gender minority individuals had higher subjective cognitive decline, we believe it may be due to higher rates of depression, inability to work, high stress, and a lack of regular access to healthcare,” Flatt added.

According to Flatt, less than half of SGM adults with SCD in the study talked to their health care provider about it. SGM adults with SCD were also more likely to report that they had to give up day-to-day activities (39% vs. 29%, p=0.003) and needed help with household tasks (44% vs. 35%, p=0.01) than cisgender heterosexual participants. Both groups were similar in terms of talking to their health care provider about their subjective cognitive decline.

First Study of an LGBT-Specific Alzheimer’s and Dementia Intervention
To advance research into Alzheimer’s in the LGBT community, Karen Fredriksen-Goldsen, PhD, professor and director of Healthy Generations Hartford Center of Excellence at the University of Washington, created the Aging with Pride: Innovations in Dementia Empowerment and Action (IDEA) study. A multisite study in Seattle, San Francisco, and Los Angeles, Aging with Pride: IDEA is the first federally-funded study dementia intervention specifically designed for LGBT older adults with dementia and their caregivers.

The researchers had previously identified unique risk factors of LGBT older adults living with dementia through the first longitudinal study of this population (Aging with Pride: National Health, Aging, and Sexuality/Gender Study). Using longitudinal data with three time points (2014, 2015 and 2016), modifiable factors predicting physical functioning and quality of life (QOL) among LGBT older adults with dementia (n=646) were identified.

LGBT older adults living with dementia were significantly more likely to live alone (nearly 60%), not be partnered or married (65%), not have children (72%), and not have a caregiver (59%), when compared to older non-LGBT adults living with dementia. Previous experiences of discrimination and victimization (b=-0.19, p<.001) were negatively associated with QOL among LGBT older adults living with dementia. Socializing with friends or family (b=1.11, p<.05) was positively associated with QOL, and physical activity (b = 0.26, p<.001) were associated with better physical functioning.

As reported at AAIC 2019, Aging with Pride: IDEA includes a tailored approach in which trained coaches identify and modify challenging behaviors that are adversely affecting older adults living with dementia and their caregivers, either of whom are LGBT. The coaches delivered an individualized program of exercise, and behavioral and coping strategies designed to improve physical function, independence and QOL.

The exercise intervention is a low-impact physical exercise program including nine one-hour sessions over six weeks designed to improve physical functioning and maintain independence. The behavior and coping strategies include: techniques for working with LGBT-specific trauma, identity management and disclosure of their LGBT identities to providers and others, plus support engagement in the LGBT community and dementia services. Testing of the intervention is now underway and will be delivered to 225 pairs of LGBT older adults living with dementia and their caregivers.

“Given their lifetime experiences of victimization, discrimination and bias, many LGBT older adults forgo seeking needed medical care,” said Fredriksen Goldsen. “LGBT people living with dementia and their caregivers often have difficulty accessing information and support services, which can be especially challenging when memory loss and dementia enter the equation.”

HIV & Aging in San Francisco

HIV & Aging

Older adults living with HIV in San Francisco face staggeringly high rates of mental health issues and levels of loneliness, as well as experience a dire need for regular social connections and health care coordination, according to a landmark new report by the ACRIA Center on HIV and Aging at GMHC released Sunday.

The report, issued as the first part of the multi-site Research on Older Adults with HIV (ROAH) 2.0 project, demonstrates in stark terms that living with HIV as an older adult presents a unique set of challenges—and requires a complex set of coordinated solutions. More than 50% of all people living with HIV in the United States are age 50 and older, and by 2020, 65-70% of people living with HIV will be age 50 and older.

“While there is increased awareness that there is a critical need for both more services for, and more research about, older adults living with and affected by HIV, our nation is not fully prepared for the medical and social implications of the growth of this population,” said Stephen Karpiak, PhD, Senior Director for Research for the ACRIA Centers at GMHC and a Co-Principal Investigator of ROAH 2.0. “We hope that the fresh insights from this timely study—which come just as adults age 50 and over are becoming the majority of all people with HIV in the United States—will inspire action to address the many challenges older adults with HIV face.”

In San Francisco, where 65% of people living with HIV are age 50 or over and the cost of living is among the highest in the country, the need to know more about older adults with HIV is particularly pressing.  Though most participants reported that their HIV is well managed and that their health is “excellent” or “good,” 41% reported that their health is “fair,” “poor,” or “very poor.” They also reported a high burden of physical symptoms and diseases other than HIV.

Furthermore, survey participants said that they contend with hunger, low income, and burdensome housing costs. Many also said they lack ways to get help with the activities of daily living or care should they fall sick or be injured.

The findings of the report underline the importance of providing older adults with HIV with medical services guided by the principles of geriatric medicine (an approach tailored to the complex needs of older adults with multiple chronic conditions, e.g., multimorbidity and associated risks of polypharmacy), enhanced access to mental health treatment and social support, trauma-informed care that acknowledges the repercussions of a history of trauma and avoids re-traumatization, and programs to help ease the financial burden of living in a high-cost city on a low fixed income.

Other notable findings in the San Francisco ROAH 2.0 study include:

  • Rates of depression and PTSD were extremely high: 38% of participants scored as having moderate to severe depression and 35% scored as having post-traumatic stress disorder (PTSD) using conservative criteria. About half (51%) of the participants reported childhood sexual abuse.
  • Participants show a high prevalence of multimorbidity (having two or more chronic illnesses). They report a heavy burden of illness and physical symptoms: On average, they reported experiencing seven symptoms or diseases besides HIV in the past year. Data shows that the older adult with HIV is evidencing higher rates of illnesses typically associated with aging (cancers, cardiovascular disease, osteoporosis, kidney disease, liver disease, diabetes). Multimorbidity is associated with elevated risk for polypharmacy.
  • Three-quarters of participants said their needs for emotional support were not fully met, and just over one-fifth said they needed “a lot more social support.”
  • The most frequent need among participants (and the need that was most often unmet) was having opportunities to socialize or meet others.
  • Nearly 60% of the participants reported that their housing costs account for about half, or more than half, of their income.
  • A brief assessment showed that 19% of participants were food insecure (meaning they have uncertain or insufficient access to food) and 25% experienced both food insecurity and hunger.

The full study, a successor to a pivotal ACRIA study of 1,000 older adults with HIV in New York City in 2006, will ultimately include almost 3,000 older adults living with HIV in sites across the United States, including New York City, Upstate New York, Chicago, and Alameda County (the East Bay), as well as San Francisco. Results will help social researchers and care providers across the country develop more services geared specifically toward people living with HIV who are over the age of 50.

“GMHC is committed to being a national leader in the study of older adults living with HIV as we all start to fully grasp the enormity of the challenges faced by the 50-and-over population living with HIV,” said GMHC CEO Kelsey Louie. “We hope that service organizations across the country will start to use these findings as they develop services and interventions designed to help this population. Since entering into a strategic partnership with ACRIA in 2017, GMHC has redoubled its efforts to work collaboratively with our older adult communities, launching the Terry Brenneis Hub for Long-Term Survivors earlier this year, relaunching GMHC’s pivotal Buddy Program, and using new data to better tailor our services. We look forward to shepherding more vital research that will help us provide the best possible holistic care for our older clients.

LGBTQ Health Equity and the BRFSS

If you care about LGBTQ Health Equity, then chances are you need to know more about the Behavioral Risk Factor Surveillance System, or BRFSS. BRFSS is the nation’s premier system of health-related telephone surveys that collect state data about U.S. residents regarding their health-related risk behaviors, chronic health conditions, and use of preventive services.

The survey is conducted in all 50 States and the District of Columbia. While most questions are standard, some supplemental questions vary by state, and a growing number of states are choosing to include questions about sexual orientation and gender identity/expression in order to better understand the disparities LGBTQ people experience.

The National LGBT Cancer network has developed a new fact sheet about the BRFSS. They write: “Understanding health disparities faced by LGBT Americans begins with SGM measures in population-level surveillance systems like the BRFSS. A critical first step in assessing the existence of and trends related to the health disparities many SGM populations face is to ensure that LGBT-specific demographic measure such as the BRFSS’ SGM’s optional module, also known as sexual orientation and gender identity (SOGI) module is adopted.”

Read the entire fact sheet below:

Health Resources for LGBTQ Veterans

Health Resources for LGBTQ Veterans

All Veterans are welcome at VA, even those who identify as a sexual or gender minority. Sexual and gender minority Veterans have faced stigma and discrimination, which can affect health. It is important that Veterans with LGBT and related identities know that they are welcome at VA.

Available Health Care Services

There is an LGBT VCC at every facility to help you get the care you need. Contact the LGBT VCC at your nearest facility.VA health care includes, among other services:

  • Hormone treatment
  • Substance use/alcohol treatment
  • Tobacco use treatment
  • Treatment and prevention of sexually transmitted infections/PrEP
  • Intimate partner violence reduction and treatment of after effects
  • Heart health
  • Cancer screening, prevention and treatment

Does my sexual orientation or gender identity matter to my health care?

As a result of stigma, stress, and discrimination, Veterans with LGBT and related identities face increased health risks and unique challenges in health care.

Learn about health risks and why you should talk to your provider about your sexual orientation identity, birth sex, and self-identified gender identity in the fact sheets below.

Questions

Why do you use the term “LGBT and related identities?”

Are there any providers specializing in transgender Veteran care in my area?

How do I get transition-related care at the VA?

Why are there resources being devoted to LGBT Veterans?

Sitting at the Table: Medical Research Advocacy

Sitting at the Table

Your voice matters. As a community activist your voice is needed when it comes to medical research, especially when researchers are recruiting trial participants from your community or trying to address health issues that impact your community.

Sitting at the table for the first time, however, can be intimidating. Many years ago, JD Davids put together these tips for Project TEACH, with help from Charles Nelson, Kiyoshi Kuromiya, and Jane Shull. These tips remain as relevant today as they were when they were first written.

1. Remember the people who aren’t in the room: You are there to represent your community, not to impress the other people at the table. You must be clear about what your community needs and wants, and report back information to people who are not there. If you are sitting on a scientific committee designing research, you don’t have to be a scientist — you need to think about and talk about how their research will affect your community. Don’t be afraid to go back and ask your community what they think.

2. Set goals to focus your participation: Your homework is to know the issue, and figure out how it affects you and your community. What can this group or committee do about this issue? Your goals must be clear, wellthought out, and possible for this group of individuals to do at this time. You can have goals for each meeting, and overall goals for the committee’s work. What goals must be met, and what goals are you willing to compromise in order to win the most important things? Discuss these with your contacts and supporters. If you learn more or situations change, look again at your goals and change them if necessary.

3. Be truly present: You need to be there physically, mentally, and emotionally. The first key to this is showing up. Go to all the meetings. If they do not meet at times you can attend, demand that the times change, or find someone else to take your place. If they communicate through conference calls, be on all the calls, or you may miss important information.

Listen to everything. It is not helpful for you to demand an answer to a question that was already answered 10 minutes ago. Try your best to keep track of the conversation. If you ask a question, you must listen to the answer — do not assume you know what they are going to say. It is very easy to get distracted, especially on conference calls. Try to notice when you are not listening, and learn to concentrate on what is going on. Bring a tape recorder if you have trouble remembering the details or taking notes, and review it later.

Stay awake. If you find yourself getting sleepy, stand up or walk around if possible. Go to the bathroom and splash cold water on your face. Don’t load up on coffee and sweets — it can just lead to a crash. Snacks like nuts and fruit can give you a better energy boost.

Focus on what you do understand, not what you don’t yet understand. It is easy to become discouraged, but remember that you have support and can learn. Picture ideas in your head at first, rather than trying to write down details, especially with scientific and treatment issues.

4. Make all your comments and get your questions answered, sooner or later: You always have the right to ask questions. If you do not understand something, and no one is helping you, interrupt the meeting and demand an explanation. If you have a comment to make, do not let the conversation or meeting end until that comment is made.

If you ask a question, and feel that it was not answered all the way, point that out. If you still feel like you are getting the run-around, you have to make a decision — should you continue to interrupt the meeting, or will you give up for now and get your answer later from one of your contacts? Either decision is the right one at different times — it will become easier to tell with experience.

If you are not sure of how to say something important or sensitive during a meeting, make yourself a note. Then work with your contacts and supporters afterwards to write a letter to all the committee members, stating your position, and email or fax it to them or bring it to the next meeting.

Don’t be afraid of disagreements, even with your contacts and allies. A good working relationship can include arguments, so people know where you stand and that they can’t walk over you. Do stay open and honest without making personal attacks.

Sometimes you may have to pick your battles, and let things go if you can get an answer outside the meeting, or come back with a stronger suggestion or proposal next time. Remember, you are there to meet your goals, in order to help your community. If you call someone a “murderer” the first time you have a minor disagreement or because they say something dumb, they may never listen to anything you say again. Some people will say ignorant or offensive things to distract you from the real issues — don’t fall for it.

Avoid making up facts and figures. You may get caught. If you are pretty sure, say “I think that…” or “I believe that…”, and hope that someone else in the room can back you up. Or write a note to a contact near-by, asking if they know and can make the point. Sometimes you may need to bluff to bring out an important issue or make a point. You can act like you know the details without saying any. Use words like “approximately,” “about,” or “roughly” to describe your best guess, as in “About half the people dropped out of the study because of side effects. Obviously there is a problem here.”

5. Get in on the details. Most of your goals may be for big issues and decisions. But smaller things can make a large difference, too. Sometimes the people who write the final wording of a policy or decision have the most power. Do not give your okay for a general statement and go home — help write it, or demand to see a copy before it is made final or sent out!