DESPITE PROGRESS MADE in research and treatment in 2019, cancer still affects millions in the U.S. and around the world. ​As 2019 draws to a close, Cancer Today editors have chosen some of the year’s noteworthy articles that highlight the real-life issues​ that cancer patients and their loved ones face.​

My Friend’s Cancer Taught Me About a Hole in Our Health System

New York Times, March 25

Pediatrician and researcher Aaron E. Carroll realized firsthand how important caregivers are to the U.S. health care system when his friend was diagnosed with cancer. “I was utterly floored by how hard it all was,” he writes of the difficulties of his friend’s recovery: treatment side effects, extra expenses, missed work, coverage for child care and treatment-related travel, among others. “By my count, other adults missed at least 30 days of work to get Jim to his appointments,” Carroll writes. “The economic loss—the many months of work—is the least of it. Not included is all the strain that has been put on Jim’s relatives as they’ve shifted to care for him while still maintaining all the obligations and commitments any family of five has to deal with.”

Cancer Town

The Guardian, May 6 (ongoing)

Approximately 9,000 people live in the unincorporated community of Reserve, Louisiana, an area where the risk of cancer is 50 times the national average for the United States. In 2019, The Guardian began a year of reporting from the place dubbed “Cancer Town,” illuminating the ways that social inequality can impede people’s ability to preserve their own health. Air toxicity caused by a nearby chemical plant is thought to be the reason why cancer risk is higher in Reserve than in any other place in the U.S. Denka, the Japanese company that bought the plant from American chemical giant DuPont in 2015, maintains that it operates within state permits—but a report in December suggests the company has been lobbying to undermine the science that underpinned a 2010 Environmental Protection Agency study finding that the air pollutant affecting Reserve was “likely to be carcinogenic to humans.”

The Arc of Therapy: From Cure to Humbling Legacy

Journal of Clinical Oncology, June 10

When Gene Bishop was diagnosed with stage IV non-small cell lung cancer at age 71, her doctor called her “our humbling legacy.” Bishop, who became a doctor herself, was diagnosed with lymphoma at age 18 in 1965 and was treated with radiation. She was among the first group of Hodgkin lymphoma patients to survive long-term. But many side effects followed her treatment, including three cancers and heart disease. “I am the living—or perhaps I should say dying—history of one of our more successful efforts to treat and cure cancer in the last 50 years,” she writes. Her essay raises questions about how doctors today should talk to patients about the unknown risks of new treatments like immunotherapy, and how patients should assess these risks.​​

Why I Wrote the Rx That Helped My Cancer Patient Die

HuffPost, June 26

More than half a dozen states now have Medical Aid in Dying (MAID) laws, meant to allow patients who are dying to end their own lives. Medical oncologist Ross Camidge of the University of Colorado Cancer Center in Aurora writes about his experience helping one of his patients to die through his state’s MAID process. Camidge, who is known for his work helping research new therapies for lung cancer, writes about his discomfort as a physician with ending life. But he also argues that doctors need to engage with the process. “MAID is going to happen. And if it is to happen without misuse and mistrust, the physicians who know their patients the best should recognize the chances they give up to ensure that all other options have been talked through, to ensure the process is not abused and to really be there for their patients when they do not participate,” Camidge writes.

The Promise and Price of Cellular Therapies

New Yorker, July 15

Siddhartha Mukherjee, the author of the 2011 Pulitzer Prize-winning book, The Emperor of All Maladies: A Biography of Cancer, writes about the expense of developing and manufacturing CAR-T cell treatments that modify a person’s T cells to recognize and attack cancer cells. Two CAR-T cell therapies have been approved by the U.S. Food and Drug Administration for blood-related cancers. Their price tag, Mukherjee writes, is $373,000 and $415,000. “The estimated cost to manufacture a typical CAR-T infusion is close to six figures. In short, even if CAR-T therapy were offered with no margin of profit, it would still rank with some of the most expensive procedures in medicine. Extracting cells from an individual patient, purifying them, genetically modifying them, and expanding their numbers into the millions will never be akin to churning out amoxicillin in a factory,” writes Mukherjee.

Cancer Treatment at the End of Life

New York Times, Aug. 5

Death is still a taboo topic for many in the U.S., writes Jane E. Brody, but there are signs that Americans are becoming more comfortable with discussions about the end of life. As cancer treatments become ever more sophisticated, there is a pressing need to continually question who receives them. Is it right for a 90-year-old to spend the final weeks of her life receiving radiation therapy? Or would she be better off ceasing treatment and focusing on saying goodbye on her own terms? The answers to such questions vary from person to person, but seeing these issues discussed openly may indicate a shift away from death being considered an impolite topic.​​​

Transpire

Transgender Cancer Patient Project, Aug. 30

In the Fall 2019 issue of Cancer Today, we spoke to Roman Ruddick and Charlie Manzano, the co-founders of the Transgender Cancer Patient Project, as part of a feature about the ways people affected by cancer are building platforms to convene people who have had similar experiences. This year, the Transgender Cancer Patient Project published Transpire, an anthology of writing and art that explores the intersection of being transgender and having cancer. Transpire demonstrates how shared experiences can help forge a community, but it’s also evidence that common circumstances don’t necessarily equate to similar outcomes. Rather than a description filtered through the eyes of an outsider, Transpire is the work of a community expressing itself independently and on its own terms.

New Evidence Shows Why the HPV Vaccine Is as Important for Boys as Girls

STAT, Sept. 11

Journalist Matthew Herper reported on a study in JAMA showing that the introduction of the human papillomavirus (HPV) vaccine Gardasil reduced the incidence of HPV in men who did not receive the vaccine. This is an example of herd protection; because women received the vaccine, men were less likely to be infected by the virus. Gardasil was originally approved in 2006 to prevent cervical cancer, leading many to conclude that it’s a vaccine for women, not men. But in the past 20 years, the number of cases of HPV-associated mouth and throat cancers has increased rapidly; there are an estimated 13,500 such cases each year in the U.S., and of these, 11,300 are in men. HPV infection is a risk factor for mouth and throat cancers in both women and men, but Gardasil is not approved by the U.S. Food and Drug Administration to prevent these cancers. (In addition to being approved for cervical cancer prevention, the vaccine is now approved for prevention of anal cancer in men and women, as well as vulvar and vaginal cancer in women.) “I think people have to be aware that the burden of HPV-positive oropharynx cancer in men in the United States now exceeds the burden of cervical cancer diagnosed each year,” Maura Gillison, an oncologist at the University of Texas MD Anderson Cancer Center in Houston who conducted the JAMA study, told STAT.  

You Publish – We Perish

Cats & Cancer blog, Sept. 15

Sharing her insights as a metastatic cancer survivor, Sandra Spivey has served as an advocate reviewer for research proposals for three separate breast cancer funding organizations. She questions the “publish or perish” ethos of some researchers, whose goal is to publish papers in scientific journals. Spivey asks whether there might be more opportunity to focus on the potential value of research to patients. “The reward system favoring publishing over impact is fraught with long term issues, issues that may have decelerated progress,” Spivey writes. “Many advocates believe that if we just spent a lot more money on research, we would be closer to ending the death spiral in metastatic breast cancer. But I’m not convinced that by only increasing funding for breast cancer research, we will achieve better outcomes for patients. There’s more to it than that.”

Notorious KRAS: Taking Down Cancer Researchers’ Biggest Foe

Chemical & Engineering News, Sept. 23

Around 30% of cancers have mutations in the RAS family of genes, which includes the KRAS gene. But the proteins these genes encode are difficult to target with drugs. In 2019, researchers presented data from the first clinical trials of a new class of drugs that target tumors with a specific KRAS mutation. Science writer Lisa M. Jarvis explains how these drugs were developed and are making their way to the clinic. Early data indicate that these drugs can shrink tumors in patients with lung cancer. “The big chemistry question—can a small molecule shut down KRAS—has been answered,” Jarvis writes. “Now, everyone involved awaits the answer to the biological one: Does shutting down this cancer villain make a difference in the lives of people with cancer?”​​

Hospital ‘Risk Scores’ Prioritize White Patients

Science, Oct. 24

Algorithms are increasingly used to guide the health care patients receive. A study published in Science​ revealed that an algorithm used by U.S. hospitals and health insurance companies to assign “risk scores” to patients had a racial bias: Black patients who were much sicker than white patients were assigned the same risk score. The study found that the algorithm determining the scores used health care costs as a proxy for overall health. However, less money is typically spent on black patients compared with white patients who have the same need because of unequal access to health care. Lower expenditures translated into a lower risk score, according to the algorithm, irrespective of how seriously ill the patient was, and that led to the racial bias. Adjusting the algorithm to predict how many chronic illnesses a patient is likely to have in a year rather than assessing risk based on cost reduced the racial disparity in risk scores.

‘Like a Dream’: Mom With Metastatic Breast Cancer on Outliving Her Prognosis

Today.com, Oct. 25

This 16.5-minute video provides a look at the life of Beth Fairchild, who was diagnosed with metastatic breast cancer in May 2014. While describing the reality of metastatic breast cancer, the video highlights the ordinary challenges and joys of Fairchild’s life. The video shows her passion for providing areola tattooing for women after they have had mastectomies and her desire to see her 20-year-old daughter pursue a career that “fills her up.” Fairfield struggles with the reality of her diagnosis: “I try to stay really present,” she says, “but I would love to see my daughter get married.” She also describes “finding her person” after her marriage ended when she was diagnosed with cancer. Fairfield met her boyfriend at a New York Fashion Week event that showcased a lingerie line for women who underwent mastectomies. “Beth constantly asks me why I am in this relationship with her,” he says. “You get no guarantees with any relationship you are in. That relationship can end in three months or six months. You might as well enjoy it while you are in it, and if it’s really good, then congrats, good choice.”​​