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The intergenerational impact of aging with HIV

Dec. 1 is World AIDS Day

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World AIDS Day 2023 at the White House (Washington Blade Photo by Michael Key)

BY TERRI L. WILDER | Today, Dec. 1, 2024, the global HIV community marks the 37th annual World AIDS Day (WAD). Here in the U.S., the face of HIV looks quite different than it did on the first WAD in 1988. It is estimated that more than 50 percent of people living with HIV (PLHIV) in the U.S. are aged 50 and older — an age that must have seemed impossible to the countless young people diagnosed during the height of the epidemic. Some were diagnosed later in life, whereas others have lived with HIV for many years — in some cases, since birth. 

While their stories differ, PLHIV all face a common challenge: facing the impact of aging with HIV. The theme of WAD 2024 is “Collective action: Sustain and accelerate HIV progress.” A key to this progress is uplifting and understanding the real stories and lived realities of those growing older with HIV and using their experiences to guide proactive policy.

The spread of misinformation

In 1981, the first cases of what would later be identified as HIV (human immunodeficiency virus, the cause of AIDS) were reported. Three years later, Nathan Townsend was diagnosed with HIV at age 30.

When he got the call with the news, he was shocked. Early reports of HIV often suggested that only specific communities — most notably white gay men — were vulnerable to HIV. However, widespread misinformation contributed to the Black community later accounting for nearly half of all AIDS-related deaths, according to a 1999 CDC report.

Then, Nathan received more grim news: He was told by his doctors he only had two years to live. Believing he was going to die, Nathan purchased a casket and paid for his future funeral — one that thankfully didn’t come.

Today, Nathan is one of the growing number of older people  who live with HIV, with researchers estimating that 70 percent of those living with the virus will be 50 and older by 2030

The stigma of HIV diagnosis

As awareness of HIV grew in the late 1980s, many Americans expressed stigmatizing attitudes. A 1985 Gallup poll found that 28 percent of Americans reported that they or someone they knew had avoided places where gay men might be present because of HIV; by 1986, the percentage had grown to 44 percent.

This was the beginning of the endless stigma faced by those living with HIV — something Porchia Dees and Grissel Granados experienced.

Porchia was diagnosed at two months old through perinatal transmission and is part of the first generation of children born with HIV. Doctors indicated that Porchia wouldn’t live to see her fifth birthday. Fortunately, Porchia would prove them wrong.

Porchia still remembers the stigma she felt when she learned of her diagnosis in sixth grade from a social worker at the Children’s Hospital in Los Angeles. She recalled being pulled aside and asked if she was sexually active before being explicitly warned against having any sexual activity. The next time she heard about HIV was in a sex education class, which furthered the stigmatizing message that she would never live a “normal” life.

Today, Porchia is an advocate, changing people’s perspectives on what it means to live with HIV, but it does not come without challenges. At 38-years-old, Porchia is more focused on her health after witnessing long-term HIV survivors battle kidney failure, renal failure, bone density issues, cognitive issues, breast cancer, and shortened lifespans.

Grissel, another lifetime HIV survivor who acquired HIV through perinatal transmission, considers herself lucky that her mother explained the diagnosis to her at a young age. Despite her family’s support and honesty about HIV, a now 38-year-old Grissel still had to grow up with fear and uncertainty while now facing the fear of early mortality. 

Social isolation

When Rev. Claude Bowen was 33 years old, he received a phone call that would change his life: His HIV test came back positive.

Believing he only had two years to live, he hid himself away, self-medicating and isolating himself from his support systems. These coping mechanisms served as an escape from his reality. But eventually, he realized that this was his reality and wanted to fight. He started getting involved in HIV education and advocacy work after his best friend disappeared in the late 80s. He would soon get a phone call, learning his friend had died of complications related to HIV.

For the LGBTQ+ community, losing friends and chosen family during this time became all too common. From 1984-1986, over 42,500 people in the U.S. died from HIV-related causes, which doesn’t account for individuals who died from complications related to HIV whose families or loved ones asked that the cause of death not be disclosed. For older PLHIV, this devastating loss of community has contributed to social isolation and loneliness.

Living and aging with HIV

With access to care, HIV is no longer a death sentence, thanks to scientific advancements in medications and treatments. Whether in your 70s like Nathan or 38 like Portia, many health challenges now faced by people living with HIV are more related to aging than to HIV-related illnesses.

Aging with HIV comes with a greater risk of health problems from inflammation from the virus and the long-term use of HIV medications. Many people aging with HIV also face the “dual stigma” of ageism and HIV-related stigma, leading to high rates of anxiety, depression, and substance use disorders. Furthermore, many have lost friends and family to the HIV epidemic, leading to loneliness and increased risks of cognitive decline and other medical conditions in older adults, as found in a 2023 study from Frontiers in Aging Neuroscience.

Acknowledging the challenges that people aging with HIV face helps ensure they get the necessary support to live a fulfilling and thriving life.

Taking action

The Older Americans Act (OAA) funds aging services and supports for older people across the country to age-in-place. In 2024, the federal Administration for Community Living (ACL) issued new regulations ensuring that LGBTQ+ older people and older people living with HIV could have more equitable access to the programs funded under the OAA. Yet, there is still more work that could be done to ensure equitable access for those living with HIV. Congress is currently in the process of reauthorizing the law.  

While we face a challenging time in modern politics, we must urge our legislators to do whatever they can to ensure that the OAA and similar laws support PLHIV. And all of us must work with our state and area agencies on aging to robustly implement the latest OAA regulations, to ensure that all older people, including LGBTQ+ older people and those living with HIV, get the services and supports they need to remain independent.

States can also do more to protect people living with HIV by passing state-level LGBTQ+ and HIV Long-term Care Bills of Rights, as advocated for by activists and organizations, including SAGE, the world’s oldest and largest advocacy organization dedicated to improving the lives of LGBTQ+ elders. These laws ensure that LGBTQ+ older people and those aging with HIV receive equitable treatment in long-term care facilities. For instance, one long-term survivor, 82, who asked to remain anonymous for this piece, credits his doctor for his excellent treatment and care, saying, “It is tremendous to have someone in your corner that you can talk to openly and ask questions” without fear of judgment.

Finally, we must advance policies that address the needs of all those living with HIV and AIDS, no matter their ages.

The time is now

The impact of living with HIV is different for every generation. From lifetime survivors like Porchia and Grissel to those aging with HIV like Claude and Nathan, access to community support, services, and HIV-specific healthcare is essential for quality of life across generations. 

This WAD, HIV advocates, aging organizations, and stakeholders must stand with local legislators to ensure care, protection, and support for all PLHIV.

Terri L. Wilder (She/Her), MSW, is the HIV/Aging policy advocate at SAGE, the world’s oldest and largest advocacy organization dedicated to improving the lives of LGBTQ+ elders. In her role, she implements SAGE’s federal and state HIV/aging policy priorities. 

Terri has worked in HIV care since 1989, providing social services, directing education programs for clients and medical providers, and advocating for policy change. She is an experienced public speaker who has presented at conferences worldwide on various HIV topics. Terri is also an award-winning writer who has published on multiple HIV-related topics through The Body’s website, among others. Terri served on the New York Governor’s Task Force to End AIDS (EtE) and the New York Governor’s Hepatitis C Elimination Taskforce, where she contributed to the development of state plans to end the HIV epidemic and eliminate Hepatitis C. 

She is a member of the New York State Department of Health AIDS Advisory Council EtE Subcommittee, and the Minnesota Council for HIV/AIDS Care and Prevention (MCHACP). Terri has been recognized for her work through the POZ 100: Celebrating Women edition of POZ magazine (2017), as well as awards from the NYS DOH AIDS Institute, AIDS Survival Project, and Bridging Access to Care, Inc.

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Eswatini

The emperor has no clothes: how rhetoric fuels repression in Eswatini

King Mswati III’s anti-LGBTQ comments can have deadly consequences

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King Mswati III (Screen capture via Eswatini TV/YouTube)

In an absolute monarchy, the words spoken by the sovereign can swiftly become a baton striking a citizen. When King Mswati III speaks, his words do not simply drift into the air as political “opinion”; they often quickly turn into, sometimes violently, state policy. This reflects the reality of Eswatini, where the right to freedom of expression, including the right to hold dissenting political views, is increasingly being systematically eroded by the very voice that claims to uphold “traditional values.”

To understand the current crisis facing the LGBTIQ+ community in Eswatini, one must view it through the lens of a broader strategy: the weaponization of culture to justify the erosion of democratic institutions, the rule of law, and human rights protections. As observed across Africa, from the streets of Harare and Dar es Salaam to the parliamentary courtrooms of Dakar and Kampala, African leaders are increasingly using the marginalised as an entry point to dismantle civil society. In Eswatini, this strategy has manifest its most brutal expression in the king’s recent harmful rhetoric concerning sexual orientation and gender identity.

The danger of the king’s words lies in how the state apparatus interprets them as a divine mandate for persecution. Recently, we have seen this “Rhetoric-to-Policy Pipeline” operate with chilling efficiency. Shortly after the Minister of Education made public vitriol against the existence of LGBTIQ+ students, reports emerged of children being expelled from schools. In a country where the king is culturally and traditionally called the “ingwenyama” (the lion), the bureaucracy acts as his pride; when leadership suggests that a particular group is “un-African” or “deviant,” the machinery of the state, along with the emboldened segments of the public, moves to purge that group from society.

For an openly gay man who has dedicated most of his adulthood to advancing equality and dignity for all, especially marginalized communities, these are not merely policy changes; they pose existential threats. When a powerful leader speaks, they offer a moral shield for the dogmatist and a legal roadmap for the policeman. In Eswatini, where political parties are banned, and the “tinkhundla” system (constituency-based system) — a system that systematically silences dissent and favors those aligned with the sovereign — is celebrated as the sole “authentic” form of governance, any identity that falls outside the narrow, state-defined “tradition” is seen as treason. By branding LGBTIQ+ rights as “ungodly” and essentially unwelcome in Eswatini, the monarchy effectively views the mere existence of queer Swazis as a subversive act against the crown.

The most harrowing example of this pattern is the assassination of human rights lawyer Thulani Maseko in January 2023. Maseko’s murder did not happen in isolation. It followed a period of heated rhetoric directed at those calling for democratic reforms. The king had publicly warned those demanding change that they would face consequences. On the evening after the king had said, “[t]hese people started the violence first, but when the state institutes a crackdown on them for their actions, they make a lot of noise blaming King Mswati for bringing in mercenaries,” Maseko was shot dead at his home in front of his family.

The parallel here is unmistakable. When the king targets the LGBTIQ+ community with his words, he is aiming at the most vulnerable. If a world-renowned human rights lawyer can be silenced following royal condemnation, what chance does a queer youth in a rural area stand when the king’s words reach the local chief or school head? This is what I call “Chaos as Governance”: a state where the law is replaced by the monarch’s whims, leaving the population in a constant cycle of managed chaos that renders collective opposition nearly impossible. Despite strong condemnation from the organization I founded, Eswatini Sexual and Gender Minorities (ESGM), recent reports already suggest growing support for the rhetoric shared by the king, indicating treacherous weeks and months ahead for ordinary queer people in Eswatini.  

The monarchy’s defense of these actions is almost always based on “African tradition.” As Mswati has shown, the ban on political parties and the suppression of minority rights are framed as a return to indigenous governance, the “tinkhundla” system. But we must ask: whose culture is being defended? Is it a culture that historically valued communal care and diverse social roles, or is it a modern, imported authoritarianism cloaked in the robes of the ancestors?

When he uses his platform at the “sibaya” (traditional gathering) to alienate a segment of his own people, he is not engaging in dialogue; he is delivering a monologue of exclusion. This weaponized version of culture serves a dual purpose. First, it offers a “neocolonial” defense against international criticism, portraying human rights as a foreign threat. Second, it creates an internal enemy, the “terrorist” political dissident or the “immoral” LGBTIQ+ person, to distract from the fact that nearly two-thirds of the population live below the poverty line. In contrast, the royal family resides in obscene luxury, acquiring fleets of expensive vehicles.

The silence of Eswatini’s neighbors worsens its situation. The Southern African Development Community (SADC), a regional organization ostensibly committed to democracy and human rights, has repeatedly allowed Mswati to evade accountability. By agreeing to remove Eswatini from the Organ Troika agenda at the king’s request in 2024, SADC sent a message to every authoritarian in the region. If you conceal your repression behind the guise of tradition, we will not intervene.

The call for freedom of expression, including LGBTIQ+ rights, is a fundamental human right vital for safety and dignity. It demands that a child should not be expelled from school because of who they are. It insists that a lawyer should not be murdered for expressing their beliefs. It states that a king’s word should not be a death sentence. We must resist the “politics of distraction” that portrays the fight for minority rights as separate from the fight for democratic reform. The dissolution of political parties in Burkina Faso, the attack on lawyers in Zimbabwe, and the criminalization of advocacy in Senegal, Tanzania, and Uganda are all parts of the same pattern. They reflect a leadership class that fears its own people.

It is time for the African Union and SADC to decide whether to uphold the ideals of their lofty charters or to prioritize political convenience across Africa. For the people of Eswatini, improving livelihoods and human development can only occur when the king’s words are limited by a constitution that protects every citizen, regardless of whom they love or how they pray. Until then, the chaos is not a failure; it is the purpose. The monarch’s word may be law today, but the universal right to dignity is the only law that will endure. We must demand an Eswatini, and by extension, an Africa that seeks to improve the lives of its people, and where the “lion” protects all his people, rather than hunting those he deems “unworthy” of the shade.

Melusi Simelane is the founder and board chair of Eswatini Sexual and Gender Minorities. He is also the Civic Rights Program Manager for the Southern Africa Litigation Center.

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ROSENSTEIN: Vote McDuffie for mayor of D.C.

A pledge to fight antisemitism, Islamophobia, homophobia

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Former D.C. Council member Kenyan McDuffie speaks at the 50th anniversary celebration of the Capital Stonewall Democrats on March 20. (Washington Blade file photo by Michael Key)

Kenyan McDuffie is the right person to lead our city forward in these difficult times. We are different from other cities, and Kenyan understands that. We don’t have a state to bail us out, and we don’t control all our own destiny. We are 700,000 strong, who don’t have a vote in Congress, don’t control our courts, or our national guard. We have Home Rule, but it’s not absolute. Congress kept the right to review our legislation and budget. 

Recently, we found out how destructive that is. So, we need a mayor who will fight for our rights, all of our rights. The rights of immigrants, Latinos, the LGBTQ community, Black residents, women, Asians; all whose rights may still be at risk. Kenyan will fight for full statehood but understands the tightrope the D.C. mayor must walk to keep us from losing more control. 

McDuffie said, “leadership is measured by delivering results, not rhetoric.”  From his days as a union mail carrier, serving D.C. neighborhoods door-to-door, to his work as a civil rights attorney in President Obama’s Department of Justice, to his service as a citywide lawmaker, he has approached every challenge with the same values: stand up for working people, fix broken systems, and demand accountability from those in power. 

As he has committed to, “focusing on delivering what matters most to D.C. families: lowering the cost of living, expanding opportunity in every ward, and strengthening public safety with a government that answers to all D.C.” Kenyan believes every resident deserves to live in a safe and affordable home recognizing housing remains one of the largest costs for D.C. families. On the Council he authored laws expanding the supply of affordable housing, helped direct hundreds of millions of dollars to preserve and build more affordable homes across the city. As mayor he is committed to expanded home purchase and down payment assistance programs for first-time homebuyers, and District employees. Providing additional resources for housing providers to preserve and expand existing affordable housing stock, while overseeing the responsible use of taxpayer dollars dedicated to building more. He is committed to creating more family-sized units in affordable housing developments to prevent displacement of longtime residents and ensuring families of all sizes have access to safe, affordable, homes. He will streamline the process for regulatory approvals prioritizing growth, and modernize zoning to increase supply, and lower per-unit construction costs.

Kenyan is committed to expanding access to childcare and early learning, recognizing D.C. families face the highest childcare costs in the nation. He understands affordability begins at birth, which is why he helped secure funding for birth-to-three, and early learning providers. He knows strong early childhood systems support both parents’ workforce participation, and children’s long-term success. As mayor, Kenyan will expand the Local Child Tax Credit to help families cover childcare costs. He will provide incentives to employers to help expand their employees’ childcare benefits, and repurpose District-owned space, to reduce providers’ costs and expand subsidized care in neighborhoods that have been historically underserved and neglected. He supports more mixed-use project development incorporating family amenities, including childcare centers. He will secure updated zoning to allow more high-quality home-based and neighborhood childcare options. Kenyan will work to provide more District-supported early learning, and out-of-school-time programs. Programs that will consider working family schedules, including non-traditional hours.

Kenyan has always supported strong public traditional and charter schools, both essential to our children’s success, and to a thriving, inclusive, D.C. economy. He secured millions each year for school and recreation center modernizations, nonprofit youth sports programs, and ensured our children are able to have safe passage to and from school and recreational activities. He supports Career and Technical Education (CTE) programs, which better align with workforce needs, industry demand, and good-paying career opportunities. He will expand access to these programs for students in every ward. As mayor, Kenyan is committed to expanding access to reliable out-of-school-time programming across all wards, strengthening literacy, classroom quality, and responsible technology integration in vocational training, CTE programs, and career academies for high-demand sector jobs. He is committed to programs to reduce chronic absenteeism with measurable public dashboards, and full access for children who need appropriate special education, mental health, and school health services. He believes while preparing students for college, schools must also help them prepare for good-paying careers should they choose not to go to college. Kenyan understands all this must happen if we are to close the large racial wealth gap in our city.  

Kenyan understands how dependent our city is on its “Arts, Culture, Nightlife, Sports, and Entertainment Economy” and will work to reinvigorate all of those sectors, making sure our residents are fully prepared for jobs in each of them.

Kenyan McDuffie is best able to defend Home Rule and shield residents from harmful federal overreach. As a Council member, he always stood strong for civil rights and local autonomy. He understands how Donald Trump and the Republican Congress, have repeatedly interfered in our self-governance. As a former prosecutor, and civil rights trial attorney, Kenyan is ready to fight for all D.C. and has said he will make clear on Day One: “Enough is Enough.” He understands how to do this without putting us in more jeopardy.  He has said he will issue a day-one directive ending MPD cooperation with ICE. He will make sure there is a civil right-to-counsel protection program for immigrant families. He will bolster the Mayor’s Office of Legal Counsel for constitutional challenges, working closely with the District’s Attorney General. He will strengthen the mayor’s office with regard to federal advocacy efforts, to fight for statehood. Until we win that fight Kenyan will work to expand legislative and budget autonomy and defend home rule. Kenyan has authored pioneering laws that reformed D.C.’s juvenile justice system, created a public health framework for violence prevention and intervention, and improved police accountability. His record demonstrates accountability and opportunity go hand in hand. He will work to right-size MPD through smart recruitment, home purchase assistance, and he will invest in community safety programs. He will expand the cadet program to build a pipeline of D.C. residents who want to go into law enforcement. He will work to modernize the 911 and 311 systems for faster response and transparency. And he will add more neighborhood-based prevention pilots to take an “All hands-on deck” approach to crime. 

For all these reasons and more, I support Kenyan McDuffie. One of those more, is his response to the growing antisemitism, Islamophobia, transphobia, and homophobia, in the country. Kenyan said, “Leadership matters in moments like this. As your next mayor, I will bring people together across all lines of difference. I will engage with every community in this city, especially when it is not easy, or politically convenient. Washington must be a city where every resident — regardless of faith, race, gender, or identity — feels safe, respected, and heard.” That is the kind of city I want Washington, D.C. to be, and why I urge everyone to cast their vote for Kenyan McDuffie for Mayor.


Peter Rosenstein is a longtime LGBTQ rights and Democratic Party activist.

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Cuba

Cuba under pressure and without answers

Cubans talk about survival, not geopolitics

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A Pride flag hangs above Havana's oceanfront avenue in 2018. Cubans are struggling to meet their basic needs amid growing tensions between the U.S. and their government. (Washington Blade photo by Michael Key)

Tensions between the U.S. and Cuba are rising again. This is not new, but the current moment feels different. Recent measures from Washington aim to further restrict the Cuban government’s financial channels, limit its sources of revenue, and apply pressure to key sectors of the economy. This is not symbolic. It is a deliberate policy.

From the U.S. perspective, the message is clear. The goal is to force change that has not happened in more than six decades. There is also a domestic political dimension, shaped by sectors of the Cuban exile community that have long demanded a tougher stance. All of this is part of the landscape.

But that is only one side.

On the Cuban side, the response follows a familiar script. The government speaks of external aggression, economic warfare, and a tightening embargo. Each new measure becomes an opportunity to reinforce that narrative and close ranks. There is no room for public self-criticism. The blame always points outward.

Meanwhile, life on the island follows a different logic.

The energy crisis Cuba is facing today did not begin with these recent measures. It has been building for years. The electrical system is deteriorated, poorly maintained, and increasingly unreliable. Blackouts are not new. What has changed is how severe and how constant they have become.

For years, oil entered Cuba, especially from Venezuela. There were supply agreements. There were resources. And yet, the daily life of ordinary Cubans did not improve. Electricity remained unstable. Fuel was rationed. Transportation was still a daily struggle.

So the question is not new.

If the oil was there, why didn’t anything change?

Where did those resources go?

Where is the money that was generated?

Today, restrictions on oil are often presented as the main cause of the current crisis. They are not. They make an already fragile situation worse, but they do not fully explain it.

There is a deeper, longer story that cannot be ignored.

The same applies to Cuba’s international medical missions.

For years, they were presented as acts of solidarity. And in many cases, they were. Cuban doctors worked in difficult conditions, saving lives and supporting health systems abroad. That is real.

But they also functioned as one of the Cuban state’s main sources of income.

Many of these professionals did not receive the full salary for their work. A significant portion was retained by the government. In some cases, they had little or no control over the money they generated.

And there is a harsher reality.

If a doctor chose not to return to Cuba, that income often did not reach their family. It was withheld.

Today, several countries are reevaluating or canceling these agreements. Once again, the official response is to point outward. But the same question remains.

Is this the loss of international cooperation, or the collapse of a system built on control over its own professionals?

Inside Cuba, the conversation sounds very different.

People are not speaking in geopolitical terms. They are talking about survival. About getting through the day. About blackouts, food shortages, transportation problems, and a life that keeps getting harder.

Some see the new U.S. measures as a form of pressure that could lead to change. Not because they want more hardship, but because they feel the system does not change on its own. There is a deep sense of stagnation.

But that sense of expectation exists alongside a harsh reality.

Sanctions do not hit decision-makers first. They hit ordinary people. The ones standing in line. The ones losing food during power outages. The ones who cannot move because there is no fuel.

That is the contradiction.

The Cuban government calls for international solidarity. And it receives it. Countries send aid. Organizations mobilize. Public voices defend the island.

But another question is also present.

Does that aid actually reach the people?

The lack of transparency in how resources are distributed is part of the problem. Because this is not only about what enters the country, but about what actually reaches those who need it.

Reducing Cuba’s reality to a dispute between two governments avoids the core issue.

There are shared responsibilities, but they are not equal.

The U.S. exerts external pressure with real economic consequences. That cannot be denied. But inside Cuba, there is a system that has had decades to reform, to respond, to open, and it has not done so.

That part cannot continue to be ignored.

I write this as a Cuban. From what I lived. From what I know. From the people who are still there trying to make it through each day.

Because at the end of the day, beyond what governments say or decide, the reality is something else.

Cuba today is under more pressure, yes. But it has also spent years carrying problems that no one has seriously confronted.

And as long as that remains the case, it does not matter what comes from outside. The problem is still inside.

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