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I witnessed the horror of HIV 30 years ago. Here’s how we can conquer a pandemic

This is an article from The Guardian by Cleve Jones. I encourage you to follow the link and read it online along with images. It’s archived below for easy reference.

I witnessed the horror of HIV 30 years ago. Here’s how we can conquer a pandemic, by Cleve Jones


As the coronavirus rages across America, we would do well to remember the lessons, and victories, of the fight against HIV/Aids.

Thirty years ago this summer, we were one decade into the HIV/Aids pandemic and more than 100,000 Americans had already lost their lives. The nation was politically and socially divided as the virus decimated gay men and people of color. Our nation stigmatized and abused the individuals, families and communities who were suffering the most.

Early on, many thought HIV afflicted only gay men. Then we came to understand that African Americans were also severely affected. Neither community could easily trust a government that had failed to protect them in the past and neither had the resources to address the challenges of HIV on their own. The disease also spread rapidly within indigenous populations and other communities of color.

Sadly, then as now, too many people not immediately affected by the disease felt they had no stake in the fight against it. They believed it only happened to other people.

In the United States, largely because we initially perceived HIV as a gay disease, we failed to act with the speed and urgency required. This homophobia-driven indifference, compounded by racism, contributed to the deaths of tens of millions of heterosexual men, women and their children worldwide because the one nation supremely positioned to stop it in its tracks failed miserably.

Then, on 19 August 1990, after years of intense advocacy, George HW Bush signed into law the Ryan White Care Act. Senator Ted Kennedy, the liberal Democrat from Massachusetts, and Senator Orrin Hatch of Utah, equally well known for his conservative Republican orthodoxy, had sponsored the legislation. It was named in honor of a brave boy from Indiana who contracted HIV from a treatment for his hemophilia and became a powerful public face for those suffering from the disease. The legislation passed both the House and Senate by overwhelming majorities of Republicans and Democrats.

Bitter rivals – representing polar-opposite ideologies – had reached across the aisle, worked together and crafted the legislation the nation needed to effectively fight the pandemic.

Today, the Ryan White Care Act represents a national framework for responding to a viral pandemic. It ensures not only access to healthcare and medications for people with HIV, but also access to food, housing, dental care and mental health services to address as many barriers to health as possible. It is an unquestionable success and demonstrates the power of federal leadership in addressing public health challenges. While our national response to HIV still leaves much work to be done, programs and clinics funded by the Ryan White program save lives that would be otherwise lost.

There are differences, of course, between HIV and the coronavirus, modes of transmission chief among them. But it is remarkable how many parallels exist: HIV and coronavirus were first identified in America in large coastal cities where thousands quickly died. Both diseases spread to marginalized communities, especially communities of color, where the impact has been disproportionate and deadly. Again we see state and local governments overwhelmed as hospitals fill with desperately sick and dying patients.

Thirty years ago, gay people were blamed for the pandemic. Today President Trump blames the Chinese. The notion of a “gay virus” then made no more sense than does that of a “Chinese virus” today. And both beliefs betray a deep ignorance and bigotry that have lethal consequences.

Traditional and social media are alive with nasty chatter from all sides of the debates about masks and economic reopening. It is easy to mock people with whom we disagree, but snarky memes and tweets do not move us forward. Our conversation needs to focus on who dies, why they die and how we can save them while we press for effective treatments and vaccines.

Service industry workers, first responders, teachers, food supply chain and processing workers, the elderly and immigrants die because society believes them to be disposable. In our rush for economic recovery, too many workers – fearing loss of both income and health insurance – are coerced to return to work sites that are not safe. These are the people who can’t work from home but provide essential services to those who can.

A compassionate and equitable response must replace anger and politically driven division. Access to testing, treatment and healthcare should not be determined by income, skin color, language, gender, sexual orientation or geography. Real economic support for struggling families and businesses as well as local governments must not be further delayed.

We must also accept education and trust public health officials. When political and opinion leaders mock scientists and question their recommendations without basis, they undermine our best efforts to slow transmission of the virus.

The daily, if not hourly, soundbites of sensationalistic news must be replaced with sober, scientific information and guidance on coronavirus. Politics needs to bow to public health. We need to depoliticize masks and mandates the way we once did with condom distribution and needle exchanges. In American society, we treasure individual rights and freedoms. But that focus on individualism can lead us to collective disaster.

Some of us are old enough to remember another ugly national debate about the use of fabric to save lives, in which one side claimed automobile seat belts were too uncomfortable to wear while the other pointed to research and studies to show their effectiveness at saving lives. Many Americans opposed a government requirement to use seatbelts and cited all manner of pseudoscience to discredit them, imagining them as an impingement of personal freedom. The debate was remarkably acrimonious, but today almost no one would question the simple fact that seatbelts save lives.

As we did 30 years ago, we need tireless advocates. In the early days of the HIV pandemic, we shouted “Silence = Death”, scaled research buildings and hijacked meetings to get our point across: inaction and political posturing were not acceptable. We marched in the streets and through the halls of Congress for funding, research and support.

The current political bottleneck that precludes action to save lives must be broken. We all have the responsibility to tell our elected officials – Democrats and Republicans – that they must do better.

For those of us on the frontlines in the fight against HIV in the 1980s and 1990s, it felt very much like we were at war. Today we have a self-proclaimed wartime president, but he has left every state to fend for itself without a coordinated national strategy. It is a recipe for disaster. HIV advocates understood the need for accurate, timely and regulated testing, without which we had no data or map to tell us where to allocate resources, no idea which prevention strategies worked and only a limited idea of how the virus worked. Today, without better testing, we can’t know with certainty whether coronavirus antibodies confer immunity, and if so, for how long, and our understanding of how the virus mutates is hampered.

Professional athletes and career politicians have ready access to accurate and rapid tests, while most of the rest of us wait for tests that offer inaccurate readings or provide results days or weeks later, rendering them ineffective. Public health intelligence is just as important as military intelligence. President Trump may choose to ignore both, but we cannot. It is time we funded public health accordingly – for this crisis and for the next.

Worldwide, 35 million people have lost their lives to HIV, and the pandemic is not over. We have no cure and no vaccine. But we have learned that when we set aside our differences, when communities work together, when the federal government leads – with decisions based on science, compassion and common sense – we can save lives.

Even without a cure or a vaccine for HIV, we have succeeded in bringing the rates of infection and death lower than previously imaginable through life-saving medications that also prevent transmission. This is because we demanded and helped to create a sustained, long-term, science-based approach to addressing HIV. The Ryan White Care Act was a crucial component of our response then and is still saving lives today.

The thoughtful, long-term approach to addressing HIV exemplified by the Ryan White program needs to be replicated to address the coronavirus pandemic today as well as the inevitable health challenges of the future. Our very lives – and those of our family members, friends and neighbors – depend on it.

The president assures us that we will have a coronavirus vaccine soon, possibly by election day, but I well remember in 1984 when the former US health secretary Margaret Heckler told us a vaccine for HIV would be ready within two years. Thirty-six years later, we still wait for it. Empty promises won’t protect us from the threat of the coronavirus, but intentional action can.

I was there 30 years ago and experienced the horror of HIV. I also saw the power of bipartisan leadership once it was finally exerted against HIV. That is what we need today from the president, Congress and people of the United States of America. The Ryan White Care Act offers us a proven way forward. We need government and local communities to come together again and do the right thing to save lives.

This will almost certainly be a long-term challenge that will require sustained solutions, but we have shown that we can do it. There is a way forward.

Cleve Jones is a longtime labor and LGBT organizer, originator of the Aids Memorial Quilt and author of When We Rise: My Life in the Movement