‘This is such an important moment’: how stem cell research is transforming medicine | Documentaries

Ryan Custer was a beginning basketball player at Wright State University in Dayton, Ohio, when, in April 2017, he jumped into a pool at a house party and shattered his C5 spine. Paralyzed from the chest down, Custer entered a clinical trial in Chicago for experimental stem cell therapy that was able to restore limited nerve function one centimeter – shoulder lift, bicep movement, tricep use – at the same time.

Cheryl Wiers, a mother in her 40s, saw her aggressive non-Hodgkin’s lymphoma return twice, with revenge. Chemotherapy did not work, but a clinical trial for stem cell transplantation at the City of Hope Medical Center in Duarte, California, offered hope.

In San Francisco, Andrew Caldwell, who is HIV-positive, underwent experimental therapy that transfused his own genetically modified stem cells back into his body; if the modified cells produced enough HIV-resistant battle cells, known as T cells, to suppress the virus, the therapy could functionally cure HIV.

All three are at the forefront of the slowly developing horizon of stem cell therapies that could offer containment of diseases such as certain types of cancers, type 1 diabetes, wolf and other autoimmune disorders. And all three, along with several others, offer their emotional, idiosyncratic, and haphazardly radical stories in the film Ending Disease, a collection of intimate portraits of experimental medicine under the culturally tense, politically vulnerable, and extremely promising umbrella of stem cell research. .

Such research has long been a game of potentials – treatments that could cure a multitude of incurable diseases or conditions, from HIV to certain causes of blindness to quadriplegia; research whose funding could be kneeled by the whims of political power, treatments that could be made available to the masses but are limited to selection of clinical trial groups. Ending Disease, which followed several trial participants between 2016 and 2019, takes its name from the farthest reaches of said potential: “We are on the brink of a huge number of cures,” said director Joe Gantz.

For each of the case studies in Ending Disease, stem cell treatments have a potential that is unclear and unpredictable but incalculably significant. For Rosie Barrero, who was legally blinded by retinitis pigmentosa in her 20s, it’s an opportunity to see a little more clearly, less dependent on her family. For Custer, the claim of any movement under the neck. For Erica Billy, the opportunity to have her childhood daughter, Ava, who was born without a functioning immune system, escape retirement, go to school, and avoid the critical treatments – chemotherapy rounds, a bone marrow transplant – that defined her childhood.

The 138-minute documentary outlines the broad outline of what stem cells are – essentially, outline cells that could become any other type of cell in the body – and a surface-level explanation of how therapies work on a scientific level. But the portraits are hyperspecific, secular and visceral, a clear window into the time-sensitive interests of decades of research routinely jeopardized by political setbacks. “It doesn’t matter that people understand exactly how stem cells work, or exactly how CAR-T cells work,” Gantz said. Instead, the film highlights how “this is such an important moment and following up on these patients and the scientists and the doctors,” many of whom have been working on treatments for very specific diseases for decades.

As with The Race to Save the World, another Gantz film released this year that builds on the personal lives of several climate activists rather than macro-level arguments for change, Ending Disease captures “the terrible emotion these families deal with, hopefully. cure for their loved ones ”rather than the technical explanations of how, exactly, stem cell therapies work. There are appointments, trial conversations with doctors about scans, needle injections and families huddled around a hospital bed, a playful fight between Custer and his father over a disappointing college degree, a nurse playing with an immune compromised Ava in full body clothes, Caldwell’s mother. recalling his departure, a conversation between Wiers and her husband, both Catholics, over their initial reluctance and final support of therapies involving embryonic stem cells.

Meanwhile, experts like Irving Weissman, the director of the Institute of Stem Cell Biology and Regenerative Medicine at Stanford University, offer some academic context to the individual stories. Weismann, a pioneer of stem cell research for anti-cancer treatments, is witnessing the exciting cultural wars that have shaped scientific progress. The term “stem cell research” is likely to evoke, for many, the debates of the early 2000s, when the George W Bush administration directly banned the use of fetal tissue, such as embryonic stem cells, in scientific research. In 2004, California voters took matters into their own hands and spent state funding for their own stem cell research at the California Institute for Regenerative Medicine (CIRM).

Ryan Custer's mother hovers over her hospital bed in Ending Disease.
Ryan Custer’s mother hovers over her hospital bed in Ending Disease. Photo: Passion River Films

“Since that time, we have been able to develop purified blood-shaped stem cells to save people from high-dose chemotherapy with their own stem cells,” Weissman said. Scientists have for years shown that such treatment is possible, but carrying it forward to actual treatments requires years of FDA-approved clinical trials, and additional years of research that may be jeopardized by political loyalties to anti-abortion groups hostile to. the use of fetal tissue, sometimes obtained from abortions and not used in all stem cell therapies, for scientific research.

In June 2019, Donald Trump halted federal funding for research involving fetal tissue with a shocking executive order, a move that pleased the anti-abortion groups his administration sought to reassure. The order, reportedly at the whim of an obscure but stubborn West Wing collaborator named Joe Grogan, halted attempts at successful treatments for HIV and forced a number of labs to lay off staff and abandon projects. (It also delayed efforts to explore possible treatments for Covid-19 in March 2020.)

“It would be great if we could remove that political and religious aspect to look at science, and let science at least make its case and be judged by the other bodies,” Weissman said, “rather than have a ban that prevents any. From this scientific and medical development. ” The most important obstacles to the progress and, importantly, accessibility of stem cell treatments remain a “short-term policy, not understanding what pharmaceuticals do and can do and how they should work” for profit. And, in addition, the “valley of death” gap between discovery and actual therapy – a gap that is “our responsibility to look at, find out what the gap is, and fill the gap so we can advance medicine for people,” he said. Weissman.

For the patients in Ending Disease, the gap is palpable, tentative and a real lifeline. Not all attempts were successful – the film is dedicated to Steven Sharpling, who died in 2018 after stem cell injections were unable to fully eradicate the brain cancer known as anaplastic astrocytoma. But even small victories are consistent for everyday life. Within months, Custer regained the ability to move his arms, and even passed a driving test using a modified car. Wiers ’treatment, which retrained her own white blood cells to recognize and destroy cancer cells, saved her from an essentially death sentence; she is now free of cancer. Caldwell’s T-cell levels cleared a level high enough to take him off anti-virus HIV drugs. Ava George’s stem cell therapy has retrained her immune system enough that she can go to school with other children. These are visions of the future; not so much silver bullets as roads of pure incurability – should we choose to support them.

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