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January 9th, 2014

HIV Treatment Activist Nelson Vergel Faces Down Cancer

In the summer of 2013, thousands of subscribers to Nelson Vergel’s “PozHealth” listserv received a startling email from the HIV positive fitness and nutrition expert.

Nelson Bald“You are probably wondering why I have been so quiet the last few weeks…” the message began. Vergel, a trained chemical engineer who devoted himself to HIV treatment advocacy after testing positive in 1985, had a troubling explanation for his online absence. A diagnosis of cancer.

“It took me months to come out to the poz group,” Vergel said about revealing his diagnosis to his listerv. “It was a struggle for me.”

Vergel had begun the group in 1999 when lipodystrophy was a hot topic among people with HIV/AIDS and they needed a place to compare notes, and it has since become the largest treatment information listerv for people living with HIV. It still thrives at a time when the exchange of HIV treatment information among peers has waned.

The success of the group perfectly reflects the dedication of its host, a gay bodybuilder whose own serious struggle with AIDS over the years belies his appearance of physical strength. Group members clearly admire Vergel and see themselves in his medical challenges and triumphs.

So it was with some trepidation that Vergel revealed a new health crisis to the group, one that forced his HIV to the back burner. “I was very concerned that people might panic, not about me, but themselves. I didn’t want them to think this applied to them,” Vergel said. “I really was more concerned with them projecting my challenge onto themselves.”

He had little choice, however. His condition was serious.

In June, Vergel was experiencing stomach problems that doctors initially believed to be ulcers. Then came a diagnosis of H Pilori, a stomach bacteria. Vergel requested an upper GI endoscopy, during which ulcers were found and biopsied. While treatment with antibiotics killed the bacteria, the news from the biopsies was grave: Vergel had a aggressive brand of cancer known as non-Hodgkins lymphoma.

“I was shocked,” said Vergel. It wasn’t the feeling of impending death he had experienced when he tested HIV positive in 1985, but something more incredulous. “It hit me really hard. I had been preparing for heart attacks, or anal cancers, which I have checked every year. I was controlling those high risk situations. But this…?”

Despite the cruel irony of battling mightily against one disease and then facing another, it didn’t take long for Vergel’s instincts as a treatment advocate to take hold. “After I got the news, I got into my car and cried a little,” he said. “And then, before I called my partner, I got on the phone and did a Google search.”

Nelson ChemoHis research confirmed the treatment plan of chemotherapy that his doctor recommended, but he soon discovered that cancer healthcare isn’t nearly as accustomed to empowered, involved patients as is the world of HIV.

“I realized how behind oncology is from HIV,” Vergel said, “because there are fewer online resources for patients. It felt like early HIV. They don’t discuss side effects until they happen to you. I kept finding out things randomly. It made me realize how good we have it in HIV. In oncology all they care about is killing the cancer. But part of the goal should be protecting the patient from side effects.”

His treatment as a patient was often the antithesis of what he has advocated for HIV patients for decades. That advocacy, and Vergel’s influence in crafting programs to empower HIV patients, is considerable.

Vergel educated himself on HIV pathology and medications after his HIV diagnosis, and became involved in several national health commissions, leading to his founding of the Program for Wellness Restoration in 1994. Because of his interest in physical fitness, he pushed for federal funding for studies of anabolic steroids and promoted results of earlier studies that showed that once you reach 55% of lean body mass, your chances of survival drop precipitously.

He was convinced that resistance training, nutrition and supplements are a key weapon against HIV. His 1998 book, Built to Survive, found a place on the shelf of nearly every gay man who had HIV and a gym membership.

For better or worse, the image of muscled gay men with HIV that emerged in the 1990′s, pumped up from weight training and anabolic steroids, can be directly attributed to the seminal work of Nelson Vergel, who trumpeted the importance of lean body mass in fighting HIV infection and maintaining a healthy immune system.

Unfortunately, his own HIV has been multi-drug resistant, and Vergel is currently on the last available regimen to treat his disease. The clinical expression for patients like him is “treatment failure.” Vergel hates the term.

“Being called a failure sends the wrong message to patients,” he said. “and I have been trying to change that language in the treatment world. It’s demeaning to patients who are adherent.”

As his cancer treatment progressed, other differences between his two health crisis emerged.

“A good friend of mine was diagnosed with cancer the week before me. He said, ‘I have neighbors cooking for me. Doing my laundry. Isn’t it sad that I could never disclose my HIV, but I can disclose this and everyone rushes to help? This is a diagnosis that my community can get behind. Isn’t it sad that HIV isn’t the same way?’”

The good news is that, unlike Vergel’s history with HIV medication, the cancer treatment seems to have worked.

Nelson Wedding“There is no cancer based on my last biopsy,” Vergel said. True to form, Vergel made the decision himself to stop the rounds of chemo early because he was concerned with its effect on his immune system. But he remains vigilant. “You are never cured of cancer. Like HIV, you have to keep an eye on it.”

The last six months have been “the most intense of my life,” he said, but it has also included signs that life, and joy, can go on. Vergel and his longtime partner were married in Washington, DC, on September 21.

“Always enjoy the moment,” Vergel said. And then he adds an observation for those living with HIV. “Apply what you have learned in HIV and take control of your own health, no matter what the diagnosis. Oncologists are not used to seeing patients like us. Long time HIV survivors have many years of experience dealing with the healthcare environment, we have gathered lessons on second opinions, questioning our doctors, we’re relatively young and healthy and have learned a lot of skills.”

Today, Vergel is again busy posting to his POZHealth listserv, offering advice in TheBody.com’s “Ask the Experts” forum, and he just founded a new men’s health program, ExcelMale . Even the hair he lost during chemo is growing back.

“I didn’t know how resilient I was until I went through this,” Vergel says, and then there is a thoughtful pause. “Resilience. I like that word.”

Mark

Some of the most popular My Fabulous Disease videos have shown Nelson trying to whip me into shape. “Fitness Stud Nelson Vergel Raids My Fridge” is hilarious and informative, “Hitting the Gym with Fitness Expert Nelson Vergel” benefits from his tight tank top, and “The Hard Facts on Erectile Dysfunction” offers advice on, well, you know (and opens with us in bed together). Check them out!

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6 Responses to “HIV Treatment Activist Nelson Vergel Faces Down Cancer”

  1. Michael Mitchell Says:

    January 9th, 2014 at 11:12 am

    When Built to Survive came out, I got a copy for a friend of mine, not knowing that just a few years later I would buy a second copy for myself. Of course, I read it before giving it to my friend and have used it as a reference ever since then. Nelson Vergel is a well-recognized figure – not just because of his overall hotness – but because of his smile and can-do attitude. He has always made himself available at conferences to answer questions from participants like me.

    Thank you, Mark for updating all of us on Nelson’s successful treatment of his cancer.

  2. Lilliane Says:

    January 9th, 2014 at 11:13 am

    Nelson,
    Love to you! But you WILL beat this. My HIV poz partner had the same thing. Aggressive dbl b cell NHL. I would encourage lettin the chemo run its course and having them boost your immunity with shots like, Neulasta. And of course all of the immune building things you do. “Built to Survive” was one of our many references during our journey. Stay strong and be your own advocate- demand the care you deserve. Much love.

  3. Ed Says:

    January 9th, 2014 at 12:01 pm

    Nelson’s intellect, research and unrelenting fight for the treatment of HIV has saved and improved the lives of countless individuals. I believe his work will also be the foundation for a whole new approach for the health of all aging men. He is an angel among us and I am so grateful I have him as a good friend.

  4. Jeton Ademaj Says:

    January 9th, 2014 at 1:51 pm

    Nelson,

    I’ve told you before and i’ll say it forever: you have had a big part in saving my life, my (and my husband’s!) health, my happiness, my well-being, and my hope. You are a primary inspiration for getting off my ass and involved in healthcare activism. You are a fukn dynamo, and a sexy-ass tornado of life force.

    You will beat this, and hopefully you will give me a head’s up the next time you’re in NYC. crack beers, bust heads, shake walls…whatever’s clever.

    much, Much Love.

    Jeton Ademaj

  5. Rachel Says:

    January 11th, 2014 at 1:52 pm

    What a very well-written article! Nelson, you are such an inspiration! Also, it breaks my heart that you were keeping the cancer a secret because of your selflessness of not wanting all of us folks on your awesome listserve to project the cancer onto ourselves. What a sweetheart you are. You are a very giving soul.

    Sending you good healings vibes for your continued improvement. I like the word resilence too. It’s empowering.

    Much love to you,
    Rachel

  6. Robert Desmarais Sullivan Says:

    January 13th, 2014 at 2:11 pm

    Since 1988, I’ve used Built to Survive and the website Medibolics as guides. Except for the offensive “protease paunch” resulting as a medication side-effect, I’ve been able to lead a fairly normal life. Only once did an infection of double pneumonia almost do me in, but the doctors think it was not connected to being HIV, since my t-cell counts were so high. Anyway, I probably would not have been able to do so well without life-style changes influenced by your work, Nelson, and my family, friends and I all admire and appreciate what you have done with your intelligence and energy. May we all do as much! Sometime something’s gonna get everyone of us, and I’m sending energy and prayers your way that it’s not your turn yet. You’ve got a lot more to do, and for my own selfish reasons I want you to be around to do it.

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