AIDS in a Time of COVID

Photo from University of Cape Town announcement about 2020 half of an AIDS vaccine trial

Over the weekend I was asked what it was like when the AIDS epidemic appeared. For those who haven’t noticed a resemblance between those times and these times, here are some basics. Parallels and divergences have been hitting me in the face for a long time. At the end of this post I’ll point you to a couple of good books for getting more depth about those times.

I apologize in advance to my brother. He and I are gay. Much of what I am about to say is closer to home for him than it is for me, and he might prefer that I say it some other way or not talk about it at all.

Note: I’m using terminology common in the times I am writing about, not current terminology. Please don’t beat me up about using the language of the time.

Emergence

When Human Immunodeficiency Virus (HIV) broke out of Africa into the developed world, it landed heavily among gay men just as the gay rights movement made enough progress for the community to start opening up.

Look at whoever you love most in the world and imagine that loving each other is illegal. If anyone finds out or even guesses your secret it can get you beaten or killed, arrested and beaten up in jail before you can make bail, fired from your job, evicted from your home, disowned by your kin, or more. Having that level of repression start to lift was exhilarating. Some gay people, especially men, celebrated with lots of sex.

HIV took full advantage.

Getting its initial foothold among gay men was not inevitable. If it had arrived in the USA and Europe a decade earlier, it could have taken advantage of the 1960s when gay people still had to hide but straight people were having a “sexual revolution” and the Pill was replacing barrier methods of birth control… The AIDS epidemic would have unfolded quite differently.

HIV is stealthy. Initial infection can be asymptomatic or it can be anything up to a rough ride with such symptoms as fever, sore throat, fatigue, swollen lymph nodes, muscle or joint pain, night sweats, nausea, rash and sores. At worst it sounds like a bout with influenza, doesn’t it? Ditto for polio, which used to be called summer flu or summer grippe in its initial acute stage.

Nobody realized something new had arrived. It was also difficult to see a connection between exposure and getting sick because symptoms could take a few weeks to develop.

At most, people were sick for a while and then went back to normal, just as they would after a case of flu. Meanwhile, HIV made itself at home, spreading to more people whenever it got a chance and slowly wreaking silent damage on the immune system.

For years we didn’t know we had an epidemic of people getting sick with anything novel. But in the 1980s weird outbreaks of diseases already in textbooks began to happen.

In 1981 there were a bunch of cases of Kaposi’s Sarcoma cancer in San Francisco, Los Angeles and New York. KS tended to show up in elderly people with weakened immune systems. Why was it turning up in a bunch of otherwise healthy relatively young gay men?

There were a bunch of cases of Pneumocystis carinii. This was another disease found mainly in immunocompromised people. Why was it turning up in a bunch of otherwise healthy gay men?

As more such weirdness popped up, the medical community gave a name to the strange new epidemic: Gay Related Immune Deficiency (GRID). It took a year or so for the USA’s Centers for Disease Control to replace GRID with the name Acquired Immune Deficiency Syndrome (AIDS), which more accurately described what was happening. Patients caught in this new epidemic had collapsing immune systems. Most notably their T-cells, a category of lymphocytes, were disappearing.

T-cells are essential for controlling the immune system’s response to threats. There are two types: CD8 “killer” T-cells to destroy infected cells, and CD4 “helper” cells to tell other immune system components how to attack an invader. Many diseases can run riot in a person who doesn’t have enough T-cells or whose T-cells don’t work properly. HIV kills T-cells, especially CD4.

Losing T-cells doesn’t happen quickly. Without treatment (remember, for many years we had no effective treatment) AIDS develops in about 5 to 15 years, on average around 11 or 12 years after the initial infection.

Fortunately for the world in general, HIV is not easily spread. To go from one person to another, it needs the infected person to expose an uninfected person to body fluids. That can be through sex, blood contacting a break in the skin, getting a transfusion with tainted blood, infusions of treatments made from donated blood, organ transplants, and so on.

If HIV had been able to spread easily, by the time anyone realized what was happening, our entire species would have been in deep trouble. Natural ability to survive HIV without treatment has turned out to be almost as rare as hen’s teeth. It jumped from animals into humans as a disease with nearly 100% fatal consequences for us.

In this part of the story, parallels between HIV and SARS-CoV-2 are stronger than most people realize. I’ll get to that later.

Response

There are entire books about gay men and the public health message about “safer sex” (using condoms). Persuading gay men to practice safer sex was not easy. It often looked and felt like society trying to impose constraints on gay men again. They had just gotten some latitude to live as who they are, and this seemed like it was cutting back drastically on their freedom. In addition, it’s tough to change behavior when the reward for the change is in the distant future. Sticking to a diet to lose weight is hard. Going about sex differently to avoid a disease that could be fatal a decade or so in the future is much more of a challenge.

For the most part gay men got past the denial phase and started trying to be careful. It was an impressive grappling with reality. We all owe them a huge debt for doing what they could to blunt the epidemic. They not only saved many of themselves, they also saved everyone else from what would have happened if HIV had widened its reach while the rest of the population still ignored it.

Slowing the spread didn’t happen soon enough for far too many. There were an awful lot of funerals.

In the early 1990s I attended a birthday party for two gay men. I was the only woman there. All the others were gay men. Among upwards of thirty people (give or take a few), only a small handful were HIV negative, including me. The HIV positives died of AIDS in the next (too few) years.

Nobody in that room would still be alive without the adoption of safer sex, first by gay men and then by others, and other precautions. What do I mean by other precautions? As an example, my dentist wouldn’t have lived to retirement age if he hadn’t changed his practice. He was practicing where the USA’s second largest politically organized gay community lived. Although some other dentists began refusing gay men as clients, he accepted anyone. He adopted the use of medical gloves, face masks and eye shields. He and all of his staff would have been infected if they had continued to only scrub their hands between patients, which was standard practice before AIDS. The change in his standards also minimized the chance that his practice might inadvertently transmit any opportunistic pathogens from a patient to an AIDS patient in his care.

Research

Meanwhile, scientists were trying to understand what was causing the epidemic. The key breakthrough was the Pasteur Institute’s isolation and successful growth of the virus in a lab culture. In May 1983 Luc Montagnier’s team at the Institute announced they had done it. They called the virus Lymphadenopathy Associated Virus (LAV).

Before the global research community could do much with this knowledge, at least one other research group had to replicate the finding with their own separate work. That’s how scientists validate discoveries. It weeds out many mistakes.

Robert Gallo said the team he led should be the one to replicate the study. His stature was such that the world stood aside and waited for him to do it. His team already collaborated with Montagnier’s team to some extent.

Earlier, Gallo had made a discovery that shook what scientists understood about cancer. His team was the first to prove that a specific virus (Human T-cell Lymphotropic Virus type 1, HTLV-1) is the cause of a specific cancer (adult T-cell lymphoma). At the time HTLV-1 circulated mainly in Japan. The cancer it caused was always fatal and arose up to 30 years after infection with the virus.

Being able to correlate a virus with a cancer does not mean the virus is the cause. It could be only one of a few things that are involved. Until HTLV-1, evidence had not gone beyond associating viruses with cancers. Gallo proved causation.

HTLV-1 is a retrovirus. It has an affinity for infecting CD4 T-cells, which the new epidemic also attacked. Surely Gallo’s experience with HTLV-1 made him the natural team leader to repeat the isolation and culturing of the virus behind the new epidemic.

Time passed. Gallo requested a sample of the Pasteur Institute’s virus for comparison. More time passed. When he at last announced success… it didn’t look right. By then, scientists understood that the new virus mutated so fast, it didn’t even stay the same in one person from one year to the next. Gallo’s presentation showed his isolated and cultured virus was too similar to Montagnier’s.

A kerfuffle followed, including disagreement about what the virus should be called (Gallo wanted to classify it as HTLV type 3) and which of the two groups should get the glory for developing a diagnostic test. On the whole, global research into HIV and AIDS was slowed down by a year or more.

Politics

Having HIV start out in the USA and Europe mainly in gay men and then in users of injectable drugs put it squarely in two stigmatized populations. Epidemiologists predicted it would not stay confined there. It would spread into the general population, especially if only gay men changed their behavior to include safer sex.

Many other people didn’t understand that. USA President Ronald Reagan is reported to have said AIDS was killing the right people (those he considered undesirable), so he did not want much effort or funding against the epidemic. He put the brakes on research in one of the most powerful countries in the world. Efforts to set up needle exchange programs to keep drug users from sharing needles ran head-on into anti-drug crusades. Few politicians wanted to be seen as champions of stigmatized people their voters didn’t care about. It wasn’t a priority.

Unintended Societal Consequences

As epidemiologists feared, HIV got into the general population before we had any significant tools against it other than barrier methods such as condoms and medical gloves.

Straight people and children began getting AIDS. Like gay men and drug users who got sick with it, they lost their jobs, which often meant losing their health insurance when they needed it most. They got evicted. They got banned from going to school. They got shunned when they most desperately needed help.

They often found themselves in support networks and hospices the gay community had created for itself. When I say “gay community,” I mean the entire community. Lesbians had unusually low risk of catching HIV in the course of their daily lives. It was not unusual for an AIDS hospice or clinic to have some working there. Gay men mostly took care of each other, but it wasn’t entirely gay men taking care of gay men, and now also taking care of whoever happened to have AIDS.

For many families of straight people who had AIDS, this was the first time they had interacted much with gay people. Now gay people they had looked down upon were taking them in, taking care of them, being kind and compassionate. This wasn’t at all what stereotypes had led them to believe.

At the bedsides of terribly sick and dying people, AIDS did more to destigmatize gay people than the gay rights movement had been able to do.

Then the gay community began pressuring political and scientific communities to get off their duffs and work harder on coming up with treatments.

The AIDS epidemic is historically unique because people became able to find out they had HIV years before it eroded their ability to take action. Before effective treatments were developed against AIDS, the quality of life for an average HIV positive person didn’t fall to the level of an average person with myalgic encephalomyelitis (ME, called Chronic Fatigue Syndrome in the USA) until the last two months of the AIDS patient’s life. HIV positive gay men knew they were living with a countdown clock, but they had years with enough strength to do something about it… and they did. They knew any progress made would probably come too late for them, but they campaigned anyway on behalf of others in the future. ACT UP! carried out classic societal change activism and created a template for people afflicted by other neglected diseases to adopt and adapt.

Without all that campaigning, we might still not have treatments that can at least make it possible to live many more years despite having HIV.

Without all that campaigning, we might still not have the new vaccine-making techniques that were developed over about twenty years in pursuit of a vaccine against HIV. Although we still don’t have that vaccine, the work toward it was repurposed to create the unimaginable miracle of first generation vaccines against SARS-CoV-2 in a year.

Comparisons With Now

The COVID pandemic is not a clone of the AIDS epidemic. Some (but not all) of its differences are daunting, such as:

• Coronaviruses are airborne. All they need in order to spread is people sharing air.

• HIV seldom kills people with the initial acute infection. It doesn’t kill directly. Something else takes advantage of how it weakens the immune system and causes death much later. SARS-CoV-2 can kill directly by causing COVID, which can be deadly in the initial acute phase. It can also kill directly after the acute phase. It can cause blood clots, cardiac problems, brain damage and injury to other organ systems.

• People don’t have to develop symptomatic COVID to get tissue and organ damage from infection with SARS-CoV-2 or end up with the virus taking up long term residence. However, where HIV persists in everyone it infects, it looks like viral persistence may not happen every time SARS-CoV-2 infects someone.

• SARS-CoV-2 is able to invade and damage a wider range of tissues and organs than HIV.

There are also parallels, not identical but with strong resemblance. Some are disturbing:

• Both viruses can persist, hiding in reservoirs somewhere within the body. HIV always does (you could fit the people it can’t do that to, worldwide, into one room and have space left over) and we know where to find it. SARS-CoV-2 is adept at hiding from tests and doesn’t always choose the same place to lurk, although autopsy can find where it established a reservoir.

• SARS-CoV-2 damages the immune system, especially CD4 and CD8 T-cells. It is less straightforward about this than HIV, which kills T-cells. SARS-CoV-2 can kill them, or it can leave them alive but too exhausted to do their job. With SARS, we can’t simply count T-cells to see whether that part of a person’s immune system is failing. SARS-CoV-2 targets a broad span of other components too: B-cells, “memory” cells, macrophages and more.

• With both viruses, there is a lag between infection and the immune system becoming weakened enough for other diseases to take advantage. The lag with SARS-CoV-2 hasn’t been scientifically determined yet, but appears to be shorter than with HIV. Less than four years into the pandemic, we already have wild escalations with diseases that shouldn’t be as much of a problem as they have become.

• Policy makers in both of my countries did not listen to epidemiologists. Just as HIV didn’t stay confined to gay men, SARS-CoV-2 is not turning out to sweep away people who are regarded by conservative politicians as financial burdens and leave the “productive” population intact. People often get Long COVID. Some of them don’t even realize they have it until they keel over. Last week I posted about how much of the prime working-age population in the UK is out with long term illness.

• Some officials deem the people who appear to be most at risk as not worth saving, and therefore hold back on measures that could prevent the spread of the disease. For HIV this meant inhibiting research toward better vaccines or therapies, safer sex campaigns and needle exchange programs. Gay people and drug users were judged undesirable. For SARS-CoV-2 this means dropping face mask mandates, not improving ventilation, not installing HEPA air filters and far UV-C lamps, making tests or vaccines or therapeutics hard to get, and forcing people to attend schools or offices in person. (Note that Parliament, Congress, government offices and many places that cater to the elite have installed HEPA filters, far UV-C, etc. People deemed valuable are getting some protection.) This time people who are elderly, disabled or have chronic health conditions are getting the short end of the stick. UK’s Prime Minister Boris Johnson is widely reported to have said, “let the bodies pile high.” Ronald Reagan’s ghost echoes. Both viruses are not limiting themselves to wiping out people who have been labeled as expendable, but policy makers behave as though they see it as mainly a danger to “other” people.

Wrapping Up

In case you have the impression that I see COVID as airborne AIDS, I don’t. I can’t prove that getting infected with SARS-CoV-2 doesn’t necessarily doom a person, but I have a strong hunch that it doesn’t. My strong hunch is that people often manage to get rid of the virus, after which they can gradually repair the damage it leaves behind. I’d better be right about this. The alternative is tough to contemplate.

However, it’s a roll of the dice each time, and data about Long COVID says in each reinfection the dice are loaded.

The most important parallel between AIDS and COVID is that the big danger is not the initial infection. We’re fooling ourselves by focusing on morbidity and mortality rates in the acute phase. If we had done that with HIV, we would have thought its fatality rate was practically zero and it only made people sick for a limited time, like flu. Why are we forgetting that lesson? Why set up an awful lot of funerals again?

I’ve only done a relatively light once-over here. I admit I haven’t been as dry about it as I usually try to be about anything this serious. Wow, there’s a book in this topic, isn’t there? But to write it, I would have to be more soft-spoken about some of my opinions. I’m not sure I want to tone down those opinions.

Speaking of Books

Disclosure: Links in this section are affiliate links.

And the Band Played On: Politics, People, and the AIDS Epidemic. Randy Shilts, 1987. This is the single best book I know of about how the early years of the AIDS epidemic unfolded. Shilts put his journalistic skills to good use. It is not a quick read. I’d get through a chapter, cry, and need to wait a day to start the next one. But it is one of the most powerful and devastatingly informative books I’ve ever read.

Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. Hillary Johnson, 1996. Although I didn’t go into this today, as AIDS swept through gay men, a separate epidemic also unfolded. Myalgic Encephalomyelitis (ME) is called CFS in the USA. It’s very different from AIDS, but handling of that epidemic also shows the impact of policy makers’ attitudes when the majority of the affected people are in a group they do not value highly. In the late 1980s to early 1990s I saw Gallo and his allies undercutting ME/CFS research in scientific journals, much like they did earlier with AIDS research. I don’t understand why. Johnson’s style is not as solid as Shilts’ but this is considered the first groundbreaking book about its topic.

I don’t want to load you up with too many books. If you can only read one of these, read Shilts’ book. I can’t imagine trying to navigate these times without knowing about those times. Shilts does a superb job of putting it all in front of you in ways that give you a gut sense of it as well as a strong base of knowledge.