By Karuna Jaggar, Former Executive Director and SABCS Guest Writer
Nine months in to the COVID-19 pandemic and we all know that virtually every area of our lives been deeply altered. With a vaccine on the immediate horizon—possibly getting FDA approval this week!—there’s a lot of speculation about which of these changes will become lasting transformations.
The 2020 San Antonio Breast Cancer Symposium is taking place virtually this year, but that won’t stick. After all, the eponymous San Antonio Breast Cancer Symposium remains “SABCS” even during our one-year hiatus from the Henry B. Gonzalez Conference Center. Even though I haven’t managed to do much relaxed socializing between—or instead of?—back to back sessions from dawn to late at night, I miss seeing familiar faces at the conference. Twitter has been full of nostalgic posts with photos of prior gatherings, mediocre wine and cheese during the poster sessions, and even the tiny conference coffee cups that fuel the marathon of presentations.
2020 marks my tenth year attending SABCS. Many things are the same—including the (now incongruous) name—but a lot is new. One thing that’s different is I’m attending as Breast Cancer Action’s special guest, after my planned transition out of the ED role earlier this year. It’s great to be temporarily re-joining the fantastic team to report the latest breast cancer treatment research, while bringing our unique, independent, patient-centered perspective into the belly of the beast.
Amply funded by industry, virtual SABCS is running remarkably smoothly—possibly even more smoothly than in person, given how often presenters struggle each year to operate their slides! The online platform allows more attendee engagement with a chat bar and the chance to type questions throughout the presentation. This combined with greater access to the virtual conference are improvements that I hope will be retained in future years. It’s a great way to minimize the expense, physical hardship, and other barriers of traveling to SABCS, allowing more patient advocates to participate.
Officially, the conference starts today, Wednesday, with the opening plenary kicking off early in the morning Pacific time zone. Tuesday is a pre-conference day, packed with 12 hours of educational sessions. The day began with a Special Session, “Breast Cancer Care During COVID-19: How Did Patients and Clinicians Respond – A Global Perspective.” No surprise: cancer patients report new and increased anxiety and depression during COVID-19. The real question is: who hasn’t experienced more anxiety and stress since March 2020?
I’ll be live Tweeting and reporting back from #SABCS20 in the days ahead. In the meantime, here are some early themes that emerged in the first day of the conference.
I’ve written elsewhere about the ways that COVID-19 amplifies disparities and inequities across the board, including compounding the existing injustices within breast cancer. I can’t help but think it’s not exactly a coincidence that in the middle of the pandemic Black Lives Matters came into its prime.
Differences and gaps in care for people of color and other marginalized communities have been documented along the entire cancer continuum; from diagnosis, to treatment, recurrence, through the end of life. All of these disparities are amplified by COVID-19. Black, Indigenous, and People of Color (BIPOC) are more likely to die from breast cancer, and are also at higher risk of developing, being hospitalized, and dying from COVID-19.
There is nothing natural about this. And I believe we must always guard against claims biology is the root cause of disparities, implying that these differences are somehow inevitable rather than produced by systemic racism and white supremacy. Similarly, individual behaviors and choices—from breast feeding to mask wearing—emerge from and exist within complex economic, cultural, social contexts and structures of oppression. So I was glad to hear Dr. Deborah Doroshow explicitly acknowledge the historical legacy of centuries of institutionalized racism in creating these unjust health inequities.
Prior research has shown that BIPOC communities are disproportionately exposed to air pollution, which has been shown to increase the risk of breast cancer. Long term exposure to the same air pollution is associated with higher death rates from COVID-19. Once sick, BIPOC individuals are more likely to face barriers to access affordable, culturally-competent, high-quality health care.
Achieving health justice requires policy change, from reducing environmental exposures that cause to expanding healthcare coverage. My hope for the incoming administration is we can finally move beyond merely trying to preserve the Affordable Care Act to introducing universal healthcare.
The Breast Cancer Action team will have more to say about breast cancer disparities and the lessons—and perhaps opportunities—from COVID-19 in the coming week.
Long before the pandemic, there was a sophisticated breast cancer community actively using technology and social media to trade information, get support, and advocate on behalf of breast cancer patients. Online groups like #BCSM have grown rapidly and brought together patients and doctors in new ways. Another way that technology can bridge geographic divide is through telemedicine, allowing people in rural areas or with other barriers to meet with healthcare providers by video conference or phone. Thanks to the pandemic, not only online support groups but telemedicine has entered the mainstream and is not reimbursed and covered by insurance plans.
While there’s no question that limiting physical contact during an infectious pandemic protects patients and providers, anyone getting care through telemedicine also knows it has limitations. As advocate, Keyla ’Nunny’ Reece explained the tradeoffs of telemedicine: “talking on the phone is not the same as being treated in person.” And for older people and other folx already on the margins, telemedicine can introduce new barriers around technological literacy and access.
It’s likely telemedicine will have a role beyond the pandemic, and we should pay attentions to the lessons so we can keep the best parts, while attend to the limitations of telemedicine.
It’s not news that once a medical protocol or treatment has been introduced, it becomes entrenched, gaining an inertia that makes it difficult to let go of. I’m not just talking about the grim old days of the Halstead radical mastectomy, current debates in how to manage lymph nodes, DCIS, and accelerate radiation therapy are contemporary examples of how hard it is to do less—even when “less is more” for patients.
Dr. Rachel Jimenez introduced me to a new term ALARA, meaning “as low as reasonably achievable”. Although the concept is not new: the seeming paradox that some patients are healthier with less medical care! Indeed, Breast Cancer Action has been asking hard questions about over-treatment for decades.
Given the US spends more on healthcare for worse outcomes, I’m always interested in discrepancies in international protocols, specifically when the US does more than other countries. So, I think we should consider that US docs have not adopted UK radiation protocols of accelerated hypofractionation. Hypofractionation can dramatically shorten the treatment time by providing the same total radiation dose in fewer treatments with higher doses. This matters, especially for patients who live far from treatment centers, because it means fewer weeks traveling to daily radiation treatments. It also has the benefit of reduced cardio toxicity and acute skin toxicity. I first blogged about this in 2012, and even then it was not new news. We heard several radiation oncologists acknowledge that in the face of COVID-19, they are willing to offer shorter accelerated hypofractionated regimens. And will be notable if COVID-19 finally pushes radiation treatment in the US more in line with international standards.
Of course, another option is to avoid daily radiation all together. Separate from the practical reasons to reduce in person treatment during the pandemic, there are other reasons to reduce radiation treatment. Even with improvements in radiation therapy, no treatment is without toxicity, prompting Dr. Reshma Jagsi to say: “Nothing would be better than getting rid of radiation treatment all together!” We agree.
Scaling back on treatment is called de-escalating treatment. Because all treatments have some toxicity and risks, it’s important to remember that “first do no harm” applies to treatment. There are times patients benefit from less surgery and systemic therapy, as well as less radiation. There will be more to come about “de-escalation” of treatment but it’s worth remembering that health inequities come from too much treatment and the wrong treatment, not only too little treatment.
The necessities of the pandemic might be the mother of adaptation–if not actual invention. Another example of oncologists being more open to re-thinking treatment, is the use of hormone therapy before surgery. Because it takes 3-6 months for hormone therapy to take effect, oncologists and patients have often been reluctant to delay surgery for neoadjuvant hormone therapy. But delays in many medical procedures and surgeries as a result of the pandemic has altered the calculus about when to use hormone therapy for some doctors and breast cancer patients.
We won’t get all the answers this week about what treatment changes will persist after the pandemic, but it’s clear that there are lessons to be learned and there will likely be enduring changes in the months and years ahead.
There has been some of hand wringing about the suspension of mammography screening programs a result of COVID-19. Researchers point to the facts that fewer breast cancers being treated, and those are more advanced and more aggressive. For example, Kaiser Permanente Northern California found a 64% reduction in breast cancers diagnosed at the start of the pandemic (compared to 2019), likely due to delaying medical care during shelter in place. Those cancer diagnosed tended to be more advanced and aggressive.
There’s no question that being diagnosed with and treated for breast cancer during COVID-19 is extraordinarily difficult. And the fact that many hospitals are limiting guests adds to the isolation and fear that many women feel. What we don’t yet know, is how these breast cancer patients will fare in the months and years ahead and if being diagnosed and treated during the pandemic makes a difference in their outcomes.
We’ve long known that screening has failed to reduce the incidence of advanced cancers. Mammograms catch more early stage cancers but have not reduced late stage breast cancer diagnoses or deaths. The data tells us it’s likely that a number of the aggressive cancers being treated during COVID-19 would have been interval cancers, that are only found between screening. What we want to know is if suspending screening means that more people will die from breast cancer as a result.
The pandemic has produced a natural experiment and we need to look at more than whether more breast cancers are diagnosed once screening mammography rates return to pre-pandemic levels. Given conservative estimates are that 20% of screen-detected breast cancers are over-diagnosed, and there are some aggressive cancers that we do not have effective treatments for, the most important question is if and how suspending mammography screening impact breast cancer deaths.
We desperately need to figure out how to save more lives and fix the unacceptable breast cancer disparities. But history shows that the problems are deeper and more complex than simply getting a mammogram.
Every year the breast cancer community waits with baited breath to see what new treatment news will be announced at SABCS. More than 40 years after the first SABCS and billions of dollars later and too many people still die from breast cancer. Just last week, I was devastated to learn of the death of Blandina Khondowe, the inaugural recipient of the Barbara Brenner Breast Cancer Activist Scholarship in 2019.
We desperately need new treatments that actually save lives. It’s not enough to cure mice or temporarily slow tumor growth, we need to see overall survival and meaningful benefit for patients. But breast cancer breakthroughs are few and far between. Instead, desperate for better options, patients are given expensive and toxic drugs, that often lack overall survival data.
I always find it moving to see the laundry list of side effects reported at SABCS: lymphedema, neuropathy, heart disease, sexual dysfunction and vaginal dryness, infertility, joint pain, “chemo brain,” and so much more—not to mention “financial toxicity.” Behind each data point on a slide is a person. And the frequency, severity, and sheer number of problems caused by breast cancer treatments is deeply sobering. Too often the treatments for these side effects feels like a game of whack-a-mole, with each coming with their own harms and costs.
I can only hope that the interest in public health sparked by COVID-19, along with the surge of applications to public health programs, will help change the way we approach breast cancer, which Breast Cancer Action views as a non-infectious “epidemic.” We are still waiting for life-extending and less toxic breast cancer treatments. Which is why we also need to put real resources into true primary prevention—not chemoprevention or other medicalized risk reduction strategies—so that fewer people develop breast cancer in the first place.
The same week that thousands of breast cancer doctors, researchers, and scientists from around the world are meeting to share and review the latest science, the U.S. Food and Drug Administration is poised to approve the first COVID-19 vaccine. The speed of the vaccine development has been stunning.
But we all know that fast doesn’t matter if the resulting treatment doesn’t work. And Breast Cancer Action has a long track record of arguing that the FDA should not lower safety and efficacy standards just for the sake of speed.
Luckily Pfizer’s COVID-19 vaccine is 95% effective overall, although some data shared by the Kaiser Family Foundation suggests it may be only 75% effective for cancer patients. We’ll no doubt learn more this week.
We’ll be sharing more about all this in the days ahead. Stay tuned. Follow us on Twitter. And share your thoughts and perspective through social media.