Heywood and Mark S. King at the 2014 “HIV Is Not a Crime” conference. Probably smoking.
Todd Heywood, known by his friends as simply “Heywood,” has been an outspoken HIV survivor, renowned investigative journalist, and queer advocate for most of his life. So it should come as no surprise that when Heywood got a cancer diagnosis last year, he has used it as a call to action for all people living with HIV.
Heywood’s lung cancer diagnosis is all too common among people living with HIV. Some of the reasons are what you might expect: as a group, we are more likely to have a history of smoking or drug use, and our bodies are in a nearly constant state of inflammation from years of toxic medications or the virus itself. Several medical journals and studies confirm that people living with HIV have higher risks for several types of cancer and should be monitored regularly.
There are lessons here for all of us, about risk reduction and early testing. Heywood had that kind of early detection and it may have saved his life.
I spoke to Heywood about his condition today, how his experience might benefit others, and what you should consider talking to your doctor about right away.
Here is our conversation, lightly edited for length and clarity.
Mark S. King: Hello there, my friend. So I know these cancers can happen regardless, but did you smoke?
Heywood:I quit smoking for four months and have started again. Addiction is a bitch. I’m trying to find new ways to deconstruct the smoking habit. Smoking is not just a physical nicotine addiction. There are rituals. Identifying those and disrupting them is the key. That’s what I have discovered.
I vape.
My pulmonologist says it could be more dangerous than smoking. We have no real science to say what it does to us. Sorry to crush you on that.
Gee, thanks Todd.
That was one of the things I wanted to do, was switch to vaping. All three pulmonologists have said it’s worse.
So now I have to stop vaping. Great.
Sorry.
Okay, tell me the story. When was the first sign of trouble?
I have a fantastic physician. Certified HIV care specialist. About 4 years ago he said it was time to start low dose CT chest scans. Because he knew I smoked and I am positive. And studies show that HIV folks have higher rates of cancers. Even if you take smoking out of the equation, being HIV positive alone means you’re 2.5 more likely to get lung cancer.
That’s because of inflammation right?
Inflammation, yes, and we’re more prone to get upper respiratory infections, bronchitis, etc. and that increases the risk as well. You’re constantly drawing the inflammation into your lungs.
So those are all good reasons to get a CT scan. So you got it and they found something. Does that mean they found it early?
It was less than 3mm in length when they found it. Tiny. By the time they removed it it was large enough to be considered a tumor.
But even though it was small, they wanted to operate?
Yes, because it was small the first step is curative surgery, where they remove a section of lung and make sure it hasn’t spread to the lymph nodes. They took out the whole lobe.
What’s a lobe? The whole side or what?
You have two lobes on the left, and three on the right. They took one of those out of the right side.
And so is it all gone?
At this point, we believe it is all gone. My tumor marker came back as a zero. No detectable growth of that cancer. It means right now, no cells are growing. I’m going to do a four-month round of chemo. Once that is done, they recommend a year course of Keytruda, you’ve seen the ads on TV, it uses your own immune system to fight cancer.
But there’s a hitch.
Yes. It encourages HIV to come out of hiding from your reservoirs.
We know that HIV hides out in reservoirs and that all your HIV doesn’t necessarily show up in viral load testing.
Yeah, it’s often dormant.
So the problem is that the Keytruda treatment could make your HIV viral load worse.
I’m undetectable right now. Taking Keytruda could allow the reservoirs and make the virus active. The good news is that my HIV treatment is working, so the meds can manage the HIV creeping out. But the increased viral load means I could become infectious.
Okay, so you have to protect sexual partners.
In Michigan, you have to disclose your HIV status if you’re infectious.
That’s fair, is it not?
Personally and morally, yes, I would disclose. I have to think globally, for people who don’t have our resources. People without our resources are more likely to be criminalized, such as trans women of color, for instance. I have a lot more privilege to make my HIV disclosure than others do.
Right. Let’s talk about the takeaways for people living with HIV. First, go get your annual CT chest scan and don’t put it off.
And get your anal pap smear, because anal cancers are far more prevalent. You also need to have a primary care physician who is well versed in aging and HIV and cancers. We’re aging faster than other people. Primary care doctors need to take that into account when looking at cancer screening. And our Hep B and C status should be taken into consideration.
Isn’t it this weird thing that we’re now dealing with cancer at an age we never expected to reach, and it’s kind of this strange blessing to even consider dying of cancer and not AIDS?
When the love of my life died of AIDS when I was 26, I thought I would die of AIDS before I was 30. I didn’t care. After I passed 30, I realized I should get my act together. So now, yes, it is a blessing not to have died of AIDS. But it is strange to me that we’re looking at this epidemic of cancers amongst people with HIV that are being caught way too late.
Way too late.
When it is difficult to treat and has spread. It’s on the medical field for not talking to us about it, and on us for not asking for the care we need.
Because we don’t even know.
We need to have conversations about this. We’re dealing with heart disease, coronary disease, higher cholesterol, all of that is not being identified.
Sometimes I think my doctor is just relieved that I’m healthy after 40 years of HIV, and maybe we’re not as focused as much as we should be on the risks of being older.
Have you had a scope for colon cancer? CT scans for lung cancer?
Hell yes. I get the swab, I get the colonoscopy, and CT chest scans. Blue Cross was running a sale on chest scans for people who had a smoking history, and that’s why I took the first scan years ago, and now they do it every year to make sure these two nodules they found haven’t grown. They haven’t.
Thank God I had my annual screening. It saved my life.
I’m glad you’re walking and talking. As with all things as health advocates, our stories can save a life. Maybe you just did.
You know me, I’m not going to shut up now that I know something that can save people’s lives.
Thank you, Heywood. I love you madly.
I love you more.
(There is now a GoFundMe page to help with Heywood’s living expenses during his prolonged and expensive recovery. You can contribute here.)
