Dessie’s Vector: Age-Reversal and a Race Against Time
What is the life of a 100 year-old woman worth?
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“… whoever saves a single life is considered by Scripture to have saved the whole world.”
— Mishna Sanhedrin 4:5
Dessie Sanders had butterscotch brown eyes that twinkled against her fair features. She spoke in a deep Arkansas drawl that exuded warmth. She lived with her daughter, Jennette, in a tidy little house in suburban Phoenix where she liked to bake for others, being off sugar herself. Pineapple upside-down cakes, coconut cream and apple pies were her specialty.
Christmas time they covered almost every surface in the house with holiday décor, figurines, vignettes in cotton wool, and tchotchke of every imaginable shape and size, transforming the house into a veritable snow globe of season’s greetings. With her white hair, round cheeks and bright manner, Dessie herself looked like the quintessential benevolent old lady out of a Christmas tale. The kindheartedness that made her the beloved nanny to Chelsea Clinton, with whom she still exchanged Christmas cards, was always present in Dessie.
But a passion to live burned in her too, and an optimism that was spiritual in its depth and resilience. Aged 100, Dessie had outlived three bouts with cancer. She actually rehabbed her way out of a rehab center that is the end of the road for most elderly people who get sent there. She’d walked out of more ICUs, more overnight hospital stays than most will ever enter.
But recently swings in her blood pressure due to heart problems were causing her to suffer bouts of dizziness. Between the sarcopenia, the loss of muscle tissue associated with aging, and the dizzy spells, Dessie had become prone to falling, and had fractured her pelvis. Though she resisted, she’d become limited to a wheelchair and without regaining mobility, she would have no way to rebuild strength. For all her spirit and resilience and lifestyle changes along the way, Dessie was caught in the vortex of the current healthcare model, which has progressed to the point of keeping people alive longer, but with no means of regenerating real vitality.
In early 2019, a cohort of longevity activists collaborated to try to give Dessie a real chance. Dessie was a member of People Unlimited, an immortalist organization based in Scottsdale, AZ I belong to, co-directed by James Strole, who’d known Dessie for decades and wanted to get her help. Strole had connected with Elizabeth Parrish, CEO of BioViva, who somewhat famously became Patient Zero for age-reversal gene therapy in 2015 in Bogota, Columbia.
In 2016, Parrish spoke at People Unlimited on the power of gene therapy to possibly cure aging. Dessie’s daughter, Jeanette, pursued Parrish afterward. “You keep talking about age reversal and my mom is just getting older and older, what can you do for her?” Jeanette would ask.
“I really wanted to do something for Dessie, but nothing was set up then to make it happen,” says Parish.
The U.S. Food and Drug Administration (FDA) remains maddingly restrictive of experimental treatments, even in cases where people are dying and have no other options. Parrish and her team had to create an original treatment equation consisting of capable clinicians, legal consent agreements and offshore resources to make it possible. Her main partner in this endeavor was a generically named firm, Integrated Health Systems, that specializes in such cutting edge treatments.
A two-part gene therapy
The plan was to give Dessie a gene therapy that would consist of two components. The first, telomerase, is the enzyme that lengthens and maintains telomeres, the caps on the ends of our chromosomes. The breakdown of telomeres has been associated with aging and its related diseases. There’s good science that suggests lengthening telomeres may be a shortcut to broad based age reversal benefits. In numerous animal studies, telomere lengthening has been shown to enable animals to live much longer and better.
The second component, follistatin, was to increase muscle mass. One of the most insidious aspects of aging is the sheer wasting of body mass. This is why weight resistance training is an obvious anti-aging tool. But Dessie was too frail to train, and required some kind of serious boost, for which gene therapy seemed well suited.
A major challenge with such gene therapies is how to deliver them into the cell nucleus. In Dessie’s case, a viral vector, which is like a hollowed out virus, would be used, called Adeno Associated Virus (AAV). Viral vectors ingeniously use the same mechanisms viruses have evolved over millions of years to infect the body, to introduce gene therapies to heal it. The FDA has approved a handful of gene therapies with hundreds of potential therapies in development.
In addition to legality, there was the problem of money. Dessie’s treatment was experimental, essentially a one-off developed by hand in the lab, with no economy of scale, and would come to a cost of about $150,000. This was to pay for the gene therapy alone — quadrillions of vectors would be required, developed over several months. Everyone else’s time and effort would be volunteered.
By the end of 2018, Maximum Life Foundation, a non-profit committed to advancing age reversal through research and education, had agreed to act as the financial sponsor for Dessie’s gene therapy and to drive the fund raising effort. “She was so damn positive and she was adorable,” the Foundation’s Director, David Kekich said, “she was like a perfect poster child for what we were trying to do.”
Strole brought the good news to Dessie and Jeanette — we now had the pieces in place to start pursuing this gene therapy for Dessie. “I really talked to them about taking care of Dessie in the meantime, and keeping her immune system strong. We didn’t want anything happening to her.”
He went over the basics with them, not for the first time, Vitamin C, Vitamin D, zinc, and other supplements she should take to keep her immunity up. Dessie, despite her frailty, could be confident to the point of carelessness and Strole warned that she must avoid more falls. He urged her not to travel now to see her family back in Arkansas so as not to tax herself and take chances with exposure to germs on the airplane.
Dessie, even in her current disabled state, viewed the gene therapy with some trepidation, while Jeanette, more realistically, saw nothing to lose.
Jeanette was first exposed to immortality through the Pentecostal Church. “I was 9 years old when I heard this minister give a sermon on how you didn’t have to die,” Jeanette says, “that we would have a new body, that we would be changed in the twinkling of an eye. Then I heard another preacher say that it was appointed to man to die. I preferred the first sermon.” Jeanette felt this gene therapy might be the fulfillment of that sermon.
Discounting the suffering of aging
Like the gene therapy itself, everything about the initiative was experimental. There was no team assembled and no strategy in place to raise the money. Similarly, there was no standing audience poised to respond; no one had seen such a campaign before.
When promotions were posted on the Maxlife Foundation website and in social media, there was little response. One social media post announced:
Maximum Life Foundation and IHS have created a crowdfunding initiative poised to make history. Dessie is 100 years old and set to receive the same telomerase induction therapy as, BioViva’s patient zero.
Please donate to the Help Them See the Future Campaign!
The post receives a few likes, and one man comments: “see ……now thats just being greedy lol”
We tend to under-weigh the suffering of the elderly, as if its inevitability has alleviating properties, at least for us. Their age or absence of prospects for recovery seems to register in our minds as some sort of thumb on the scale, which we then discount for in our own factoring, so that even when we are in the presence of their pain we may not fully feel it. Years earlier, when I was 18, visiting my grandmother, Ruth, in a Jerusalem nursing home after she’d had sinus surgery, she complained of terrible pain, and I remember how remote her suffering had seemed from me and my life. Days later I learned the surgeon went back in and found that some kind of gauze from the procedure had been left inside her sinus cavity.
Who hasn’t seen a grandparent or other elderly person in pain and one way or another shrugged it off? This may be because we no longer live with them, because they are sent away, out of sight, out of mind. Or perhaps the inescapability of aging for ourselves requires us to downplay their pain or be faced more fully by the anguish ahead of us.
Our most intimate perspectives on any disease state are typically gained from some emissary who has lived through it, and survived to tell their story. In her memoir Lit, Mary Karr helps us understand the psychology of addiction, after becoming sober, in striking, succinct thoughts like this one: “But I’m not ready to stop listening to the screwed-up inner voice that’s been ordering me around for a lifetime. My head thinks it can kill me… and go on living without me. ”
William Styron’s Darkness Visible: Memoir of Madness first published in 1989, helped raise awareness about depression. After Styron recovered from depression, he was able to enlighten us about the condition with statements such as this:
“In depression this faith in deliverance, in ultimate restoration, is absent. The pain is unrelenting, and what makes the condition intolerable is the foreknowledge that no remedy will come- not in a day, an hour, a month, or a minute. If there is mild relief, one knows that it is only temporary; more pain will follow. It is hopelessness even more than pain that crushes the soul.”
This may apply just as well to aging, but we wouldn’t know; no survivors have lived to tell about it. Who will write the first great memoir about surviving aging? Perhaps then we will have a more honest and empathetic perception of it.
Ageism runs deep and wide. A study by the Yale School of Public Health, published in 2020, found that older people in nearly 50 counties and across five continents were subjected to age discrimination that hurt their health. The study, which included more than 7 million people aged 50 and older, analyzed 422 studies and found evidence of the adverse effects of ageism on older people’s health in 96% of them, contributing to:
- Exclusion from health research
- Devalued lives of older persons
- Denied access to healthcare and treatments
- Reduced longevity
- Poor quality-of-life and well-being
Age discrimination against ourselves
Ageism is so deeply programmed that we readily submit it to ourselves. This is what the term “aging gracefully” implies, that we are going down with the right amount of fuss, which is to say, not much. It doesn’t scan for other lethal disease states; dying of cancer gracefully? But aging we are supposed to take literally lying down. Like my grandmother lay in a Jerusalem nursing home with a bit of overlooked gauze left in her sinus cavity by a surgeon who perhaps had a younger caseload to concentrate on.
Many make the argument that, indeed, a life with more years left in it, is worth more for that reason. The problem is that that younger and supposedly more valuable life usually endures into the same “debased” status of being older. So in the process of devaluing older people, every human life is devalued.
My father, whose mother suffered in the Jerusalem nursing home, lives with my mother in an apartment on Connecticut Avenue in Washington DC not far from the UDC Metro stop. After a notable career in law and government, he spends his retirement studying things like the DC sewer system with a passion that does not spare me the details when I come to visit.
We used to take walks together through the neighborhood, known as Forest Hills, as he rambled about the flora and fauna, of which there is much minutiae to mull, if one is so inclined, which he was. He also liked striking up conversation with strangers, which I enjoy too. Something about the spontaneity is liberating, and perhaps evidence of the existence of the great brotherhood of mankind after all.
On one walk, several years ago, he greeted a lady picking up the garbage, with whom he almost shared a birthday, it turned out, other old codger types, young, professionally dressed women, and others. I couldn’t figure out which ones he knew, and which were total strangers, which made it all the more enjoyable.
Then in his early eighties, my father tore his Achilles tendon, and rather than have it surgically repaired and enduring the difficult rehab, he opted to leave himself crippled. He reasoned that at his age, he didn’t have long, so why go through the hardship of rebuilding himself. There’s little doubt that if he was in his fifties or sixties, or if he expected to live say, another 20 good years, he would have repaired his Achilles tendon.
Instead, he bet on his own demise, and those walks we enjoyed are a thing of the past. He will never now regain muscle and vitality. Indeed, five years later, his heart is failing, and he relies on diuretics to relieve the swelling in his legs. He is the victim of his own ageism.
There was a chance
There were many variables involved in Dessie’s proposed gene therapy. Does the beneficial impact of telomerase in animal studies hold up in humans? Is the dosage sufficient? Is the delivery methodology effective? Will she be able to rally and respond?
But if successful, the visual and biomarker evidence of a woman struggling with aging morbidity making significant steps back toward health would be not just a scientific, but a cultural, phenomenon. It would be something akin to landing a human on the moon, but in fact, much more significant. The moon landing served as a magnificent symbol of our engineering capability, but the vast majority of us are not locked into an endless struggle over lack of access to lunar landscape, while we are all threatened by the devastations of aging. In this sense, saving Dessie would have major implications for all of us.
But the fundraising was going slowly and in mid-May 2019, we got bad news about Dessie. Jeanette reports she’s having acute pain in her hip again and checks her into the hospital. It was worrisome but we’d seen Dessie surmount so much. In the previous twelve months, she had been hospitalized for pneumonia, vertigo, heart problems, twice, chest pain, and then the fall. She possessed the capacity to rise above, she had the muscle memory of it and so did we.
Indeed, a couple days later, she was released. Then, two weeks later, more ominous news; Dessie had to check into a nursing home for rehabilitation.
I’d visited people in such places, where the aged sit stranded in wheelchairs in the hallways, like boats adrift, amid the competing odors of disinfectant and pee. They’re often sent there ostensibly for rehab, but my experience is they don’t get out.
But Dessie does. Eleven days later, she is released. That’s our Dessie.
We still needed to raise money, much more money. Although news headlines have taken to touting how Silicon Valley billionaires want to buy immortality, they and the rest of the global capital markets are only slowly coming around to investing in age reversal, which still attracts a minute fraction compared to other areas of healthcare research.
Because the fields of anti-aging and age-reversal are new and loosely defined, it’s difficult to ascertain accurate investment data. Some estimate global investment at $1 billion to $4 billion. Others suspect that it now tops $10 billion. But there seems little doubt that when compared to the $179 billion spent on pharmaceutical research and development in 2018, anti-aging investment lags far behind. This disparity is especially striking considering that scientists increasingly view aging itself as the key driver behind conditions like Alzheimer’s, Parkinson’s, cancer and heart disease.
In July, Dessie was hospitalized again. This time it was hypertension. We winced at the news but again, it was Dessie. We stayed positive. Indeed, within a couple days, Dessie was back home and we breathed a sigh of relief.
But then the hammer blow. On August 4, 2019, on a flight to Little Rock, Dessie had a stroke.
What was she doing on a flight? Wasn’t she just in the hospital? Apparently, Dessie and Jeanette decided to visit their family after all. Why couldn’t their family come visit them?
The rashness was stunning. I cursed her carelessness and Jeannette’s acquiescence. She must have thought, as we did, that she could outlive anything.
She lay in coma in a Little Rock hospital, out of our reach in more ways than one. Maybe the gene therapy wouldn’t have worked. Maybe the telomerase and follistatin wouldn’t have delivered the desired results. Maybe they would have made some positive measurable impact, but not enough to turn Dessie’s decline around. Maybe we wouldn’t have even raised the money to do it. To date, only a few thousand dollars had come in, mostly from those who know her from People Unlimited and beyond. But at least there was a chance. There was a chance.
Dessie, being Dessie, remained alive, in coma, for 16 weeks, before she finally died on Nov 5, eight days before her 101st birthday.
When is the right time to die?
When is it time to die? The answers seems to be: whenever most of us do it, or just a little bit beyond that. But this is hardly a constant. Since 1900, average global life expectancy has more than doubled. A hundred years ago, dying at 35 would have been considered normal in many places. Now it is above 70 years. Because of disparities in safety, healthcare and quality of life, we still see radical gaps in life expectancy in different regions today. In 2019, life expectancy in the Central African Republic was 53 years, while in Japan it was 30 years longer. Who is to say that today’s normal lifespan won’t be considered tragically young in the near future?
Of course Dessie was old. Of course she was dying. Still it felt like she snuck out on us somehow, like we had an agreement that she would live, at least long enough to learn if this gene therapy would work, and she broke it. But we were up against more than just Dessie and her vulnerabilities and her choices; we were up against a massive paradigmatic structure, the natural order of things. The much chronicled dysfunctions of our healthcare system, the market drivers for mortality, the chilling lack of empathy for the aged, the biases and fears against living itself, all serve this end.
While Dessie was in coma, a post popped up in my Facebook feed from Jeanette, saying how Dessie’s condition had improved and she should be able to come home soon. For a moment, my heart leaped; Dessie was doing it, she was doing it again. Then I realized the post had somehow been recycled into my news feed from months earlier, a previous crises survived.
Were we naïve to think we could intervene in Dessie’s aging now, to challenge aging itself with the capabilities we’ve got in hand? Possibly, given her age and frailties, and the sheer newness of the endeavor. But how could we know how far we’d come without trying? And who else was willing to try? And what other chance did Dessie have?
Dessie didn’t want a funeral, but one of her daughters back in Arkansas insisted. Jeanette did not attend. A more fitting memorial is that since Dessie, seven more patients have received an experimental gene therapy by way of the collaboration between Maximum Life Foundation, BioViva and IHS, this time focusing on treating Alzheimer’s, and they report quite positive outcomes so far.
You can contribute to this effort here:
