NCCS hosted a conversation this week about managing anxiety, stress, and grief with psychologist Dr. Imani Price and a panel of cancer survivors and advocates. Dr. Price shared tips on how to cope with stress during this unique time and included strategies such as connecting with friends and family virtually, taking time to get outside each day, getting sufficient sleep, and eating well.
Randall Broad, Erin Cummings, Loretta Herring, and Sharon Rivera-Sanchez, all cancer survivors and patient advocates, shared their struggles and advice for coping with the isolation and fear that many cancer survivors are facing during the COVID-19 pandemic.
In her opening comments, Dr. Price said:
The uncertainty of the times is leading to many of us feeling depressed, some of us are feeling anxious, and there’s even secondary PTSD that’s occurring as a result of everything that’s going on. This uncertainty is making many of us feel very vulnerable, and our lives are out of our hands and out of our control. Control of our lives helps us to feel a sense of well-being, and ultimately a sense of safety. Many individuals have shared with me that they are feeling similar to the way they did when they were first diagnosed with cancer. That uncertainty, not quite knowing what this is going to do long-term and how COVID-19 can impact them and their family.
Despite all of the challenges, I’m encouraging everyone to maintain and reclaim control over their lives, despite the hunker-in-place and all the other things that are now in place so that we can stay healthy and safe.
https://canceradvocacy.org/wp-content/uploads/2020/04/Managing-Stress-Webinar-feat.jpg6001200actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2020-04-17 12:39:542020-07-06 10:20:36COVID-19 and Cancer Panel Discussion: Managing Stress, Anxiety, and Grief During Uncertain Times
NCCS has been collecting questions from patients and survivors on the coronavirus crisis and decided to address these questions through a series of webinars and podcasts. Last week, NCCS hosted a conversation with cancer control expert and epidemiologist Otis Brawley, MD.
Watch the full video conversation and read excerpted portions below.
NCCS CEO Shelley Fuld Nasso moderated the discussion. “We knew exactly who we wanted to be our first guest speaker in this series. Dr. Otis Brawley is a Bloomberg Distinguished Professor at Johns Hopkins University, an oncologist and an epidemiologist. He’s also a truth teller, a myth buster, a straight shooter, and an all-around nice guy. When we called him last week to ask for advice on how we can best serve cancer patients during the scary and unpredictable season, his response was simple. ‘Just be honest with them,’ he said.”
Dr. Brawley started his opening comments talking about the nature of the coronavirus that causes COVID-19, saying, “Many of us have had coronaviruses and we just thought we had a cold. Indeed, some people who do well with the COVID-19 virus do well with it because they have had previous exposure to coronaviruses and it causes a partial vaccination, so to speak.”
Dr. Brawley also described who is at higher risk for the disease:
The immunocompromised—certainly people who have lung disease like COPD and asthma, people with diabetes, people with bad cardiac disease like congestive heart failure. We have some evidence that people who have hematologic diseases–leukemias, and lymphoma are at higher risk than people who have solid tumor diseases.
However, there is some data from China that people with GI and lung cancers and people with metastatic disease are at both higher risk getting the disease, and higher risk of not doing well from the disease, compared to the normal population.
Dr. Brawley addressed the mask issue:
The N95 masks that many people use in hospitals many healthcare providers use, EMS use, for example, those masks actually can protect the individual from breathing in the virus. The normal paper or cloth masks that we use in the operating room, or the people will use out in the public actually prevents the wearer from sending more particulates out into the air that other people can breathe in.
So the way to think about this recommendation recently for wearing the mask is, the assumption is the person wearing the mask may be spreading the infection and the mask prevents the spreading of the infection. It doesn’t protect the person who is wearing the cloth mask. One of my colleagues actually said, “Not wearing the mask in public is not suicide, it may be homicide.”
Brawley explained that there is a good reason for the new recommendations for wearing masks. “Many experts are now of the belief that perhaps half of all people who get infected with COVID-19 have no symptoms whatsoever,” he said, “and they may be totally asymptomatic, walking around shedding the virus.”
Dr. Brawley said that since this is a new disease and the screening around the country hasn’t been robust, “I can only say 20 percent of people who get symptomatic end up going to the hospital and less than half of them end up in near-respiratory arrest, or respiratory arrest requiring a ventilator.”
Dr. Brawley also described how cancer care delivery has been affected:
Many of us, many hospitals, are not doing adjuvant chemotherapy for breast, colon, and lung cancer right now, because we have done a weighing of [two things]: What’s the odds that this chemotherapy is going to prevent the person from relapsing in the future, versus the odds that it’s going to increase their chances of getting coronavirus and having a bad outcome today? Keep in mind, if we lower their white count and they get coronavirus, that is a ticket to not doing well with the disease. So many hospitals and clinics are only giving chemotherapy to people who truly need chemotherapy right now.
Brawley had a message for those touched by cancer:
This is a really difficult time. My recommendation to anyone who has cancer or anyone who lives with someone who has cancer is to stay indoors, stay away from other people, do all the things that we’ve been talking about: hand-washing, avoid people by six feet if you have to go out.
Indeed, we all need to try to be supportive of each other and try to prevent the spread of this disease until we can come up with some type of a vaccine which would be useful in preventing people from getting sick from it.
Following opening comments, NCCS CEO Shelley Fuld Nasso conducted a Q and A with Dr. Brawley. Selected questions and answers, lightly edited for clarity, are below.
Otis Brawley, MD and NCCS CEO Shelley Fuld Nasso.
Are cancer survivors are at greater risk [for COVID-19] even after treatment? Or suffering worse effects if they get it? And how does the type of cancer, treatment modality, and the length of time from treatment matter in assessing risk?
This disease is so new, no one has definitive answers to those questions. Those studies have yet to be done. Indeed, we need to study those over time, and we need to study cancer patients and non-cancer patients who get COVID and do well, but do they have sequelae? For example, in the 1917-1919 Spanish flu, people who got that were at a higher risk of Parkinson’s disease as they got older.
But the answer to your question is we don’t know. The Chinese have told us that people who have hematologic disease that is active don’t do well when they get infected. I am personally very concerned about people who got adjuvant chemotherapy for breast cancer or colon cancer a year or two ago and have finished that. We know that their immune systems are still damaged, if not totally recovered, from that adjuvant chemotherapy. So I worry about them, but I have no data on them, I don’t think anybody has data.
For cancer survivors who have completed treatment how should they think about regularly scheduled scans, testing, and follow-up appointments? I know there’s been a lot of movement toward telehealth, but you can’t do a follow-up scan by telehealth. How should they think about that?
People who have non-aggressive tumors—these are the folks who have [something] other than the fast-growing lymphomas, other than the very fast-growing breast cancers—most of those people, who should always talk to their doctor about this, their doctor is going to, I think, explain to them that they can delay the every-three-month or every-four-month CT scan looking for relapse right now. The risk of them being exposed while they’re out and about going to the doctor, and the doctor’s office and so forth, is such that those every-three-month and every-four-month CT scans for surveillance, in most diseases can be put off right now. You can miss one, we’ll catch up in July or August when things are a little bit better.
The folks who have the things that grow fast, like the Burkitt’s Lymphomas that just went into complete remission in the last couple of months, who are getting CT scans every three months—they need to talk to their doctors. For them, I think it is worth the risk and they ought to be getting those CT scans still. But it’s going to depend on the disease. Most people can skip going to the doctor, and we have converted at [Johns] Hopkins—most of our outpatient follow-up is being done by videoconferencing right now, and that’s working out well.
We’ve heard about treatments being delayed or cancelled, and you talked about the decisions in some cases to forgo the adjuvant chemotherapy, and that patients are skipping appointments that are not absolutely necessary. How are patients supposed to think about what is absolutely necessary? And what is your advice to someone who learns that their adjuvant chemotherapy is now not recommended, which gives them a higher risk of recurrence?
I’m hoping that you have a good relationship with your doc and you can talk to him or her. There are some people whose adjuvant chemotherapy is going to reduce your risk of relapse by 10%, and maybe your risk of getting COVID-19 is high, and the risk of not doing well is high, and so a 10% reduction is not worth it. There are other people where adjuvant therapies is going to reduce their risk of relapse by 40 or 50 percent. And there are some doctors who are really trying to talk to the patient over Zoom or WebEx and trying to figure out what the patient’s values are. There are certain patients who should get the adjuvant chemotherapy right now, and we are giving them the adjuvant chemotherapy, but there’s a bunch of patients who can forego it.
Can you talk a little bit about patients who are in treatment for metastatic cancers and how is this affecting their treatment?
Many of the metastatic patients are still getting their chemotherapy and still getting treatment because the feeling is that if we were to let the disease grow during this period of time, it would be inappropriate. When it looked like the shutdown in the economy would only be 2 or 3 weeks, some of us were delaying that next cycle of chemotherapy. Now, quite honestly we need to have our economy shut down into June 1 at least, probably further. Now that it looks like we’re going to be going a much longer period of time, most oncologists are electing to give chemotherapy to people who have metastatic disease, unless there’s an occasional person—you see this sometimes with breast cancer especially—who has metastatic disease but their disease is quiescent. Yes it is metastatic, but it’s not growing. That person might benefit from observation right now as opposed to continuing some type of chemotherapy.
Should those in treatment or recent treatment be wearing N95 masks, especially if they’re going to their treatments? Would it help protect them?
The problem with an N95 mask—when I was fitted with an N95 mask, they put the mask on you, figure out what size you need to wear for your face, and then they spray this sweet-smelling stuff and they ask you, “can you smell or taste the sweetness?” And if the answer is yes, the mask is not fitting correctly. You’re not allowed to wear beards with an N95 mask, for example. And so my concern is—I like the idea of cancer patients wearing N95 masks—this is Otis speaking, this is not CDC policy—I like the idea of cancer patients wearing N95 masks, but on the other hand, I’m worried they’re not going to have them fitted correctly. And number two, I’m worried when we start saying “wear masks,” that that’s going to cause people to—I hate masks and I’m always fiddling with them and moving my hands up around my face actually puts me at greater risk than wearing a mask. So I like the idea of an N95 mask if the person’s wearing it correctly, and if it doesn’t cause that individual will start fiddling with their face.
There’s been a lot of talk about in-home infusions for some cancer patients, and anecdotally we’ve heard some mixed views from patients. Some were in favor of it because it would help them manage their risk, and others had concerns about safety. We also heard mixed views from providers from a safety perspective. What are your thoughts?
Certain drugs I think can be administered at home, by usually a visiting nurse or someone who is skilled at doing that sort of thing. Certain drugs I think ought not be administered at home. For example the taxanes, Taxol and Taxotere, we have a good 3 to 5 percent of people who get those drugs have an allergic reaction to them. I want them to be in a medical environment that was able to give them more than just a shot of epinephrine for wheezing and shortness of breath. So there’s certain drugs where I think home infusion is fine, and there’s certain drugs where I would rather not see home infusion. I think that person ought to come to the hospital, or to the doctor’s office if they truly need that drug. Also, by the way, one other thing to keep in mind many of these chemo therapies are themselves carcinogens. I’m going to be concerned about exposure of people in the house to the leftover drug and that sort of thing. We have to be very mindful of that too.
Even as we’re talking about risk, we’re getting a lot of questions from from patients about their specific care and how it may be altered or interrupted due to the coronavirus and about their specific risk. Can you give some advice to cancer survivors about how to communicate with their doctors during this time?
Yeah, I actually think—I am heavily into being open and honest. “Doc, this is what’s on my mind.” The first thing that’s going to be on a lot of people’s mind, “is my cancer growing while I’m not getting treated? Am I going to be worse off because I’m not getting treated?” I’m really into open, honest communications. If you can’t have a good, open conversation with your oncologist, perhaps he or she should not be your oncologist. Unfortunately, this is a fine time to change doctors!
We’re hearing from some metastatic patients who are hearing about rationing ventilators, and that if they need care they shouldn’t admit that they’re that they have metastatic cancer. Are these types of decisions happening anywhere yet in the United States or are they just a grim possibility that we’re preparing for?
I am not aware that rationing of ventilators is happening in the United States at this time. I am aware of some emergent transportation of ventilators from one hospital to another, happening in New York—New York City, so there was not a shortage of ventilators. I really do encourage people to be very honest with their healthcare providers about their past medical issues. Some elements of their past medical history are going to be incredibly important. Certain drugs I would not use, for example, in people who have been treated for metastatic cancer. Even people who’ve been treated to complete remission from metastatic cancer, so please be open and honest about that. I hope nobody ever has to go onto a ventilator, but I am not aware in the United States at this time of anyone being deprived of a ventilator because of—they wanted to go on to the ventilator and they had a past medical history of something, or they wanted to go on a ventilator and they were of a certain age.
In planning for the potential of these shortages of ventilators, some institutions have may have had guidelines that include terminal cancer in the group of people who would be offered supportive care. But as we all know, many people live with stage 4 cancer for many years and and can be very stable with that, but yet it would still consider that to be a terminal cancer. You told us a different definition of terminal cancer, so can you talk a little bit about that and then should we be advocating for more specific guidelines rather than this broad brush of terminal cancer?
Terminal cancer, in the mind of an emergency room doc, I believe, is someone who has cancer and is going to die of that disease over the next six to eight weeks or sooner. It’s distinctly different from stage 4 disease. I say that because one of my dear friends is a patient that I took care of in 2002 and 2003, and we diagnosed her with metastatic breast cancer to brain back then, and I still talk to her. She’s living with metastatic disease now for 18, 19 years. There is a difference between stage IV and terminal. Now there are some people who have stage 4 disease who are terminal. There are some people who have congestive heart failure who are terminal as well. By the way, we have really good data to show that people who are very sick who go on to the ventilator—going on to the ventilator, by the way, is not a pleasant experience at all. Many people who have come off of it have described it as being waterboarded. I’ve actually had patients who said “I never want that experience again—don’t put me on the ventilator again.” Keep in mind, the people who they are saying “don’t put me on the ventilator” are the people who are very likely never going to come off of a ventilator alive.
I want to turn now to talk a little bit more about disparities. You did talk about some of the disparities and outcomes and there’s been a lot of reporting in recent days about higher death rates for African Americans diagnosed with COVID-19. Dr. Fauci acknowledged these disparities in the daily White House briefing earlier this week, and also there’s been reporting that the death rate has been higher for Latinos in New York. What do we know about the reasons behind this? Is this just a function of the disparities we already see in cancer care that are now coming to light in a much more public way with this? What can be done in the short term? I know some of these are factors systemic to the healthcare system, but are there any things in the short-term that could be done to make a difference to stop this crisis in African American communities?
I think Dr. Fauci was incredibly appropriate in talking about those disparities. I think the only thing we can do right now is try to make sure that every human being, no matter what their race or ethnicity or credit score is, has adequate care—for all things. One of the problems I have is the president said we’re going to pay for everybody’s COVID care. Well, what about their diabetes and congestive heart failure underneath that that’s actually going to increase their risk of 1) getting COVID and 2) not doing well with COVID as well? I’m really into giving adequate care to everybody. By the way, the incidence rate in poor people is probably lower than the incidence rate in middle class people, because poor people don’t have a doctor who can—I ran into this just yesterday, somebody called me and asked [if I] would I write them an order for them to get tested for COVID-19. You have to have a doctor’s permission to get tests—poor people don’t have relationships with doctors. They may have a relationship with a clinic that’s giving them their diabetes medicine but that’s not same as having a relationship with a doctor. Right now I think the most important thing to do is to try to give everybody the care that they need.
I’m going to look into my crystal ball and predict that—we’re talking about disparities in Blacks and Hispanics and in the big cities right now—two months from now, I think we’re still gonna have this problem out there, but we’re going to be talking about the disparities in poor whites in the southern United States. Because we’ve had a couple of states, Georgia being one of them, where the governors made some absolutely stupid decisions in delaying closing things down and we’re going to see spread into the white, poor rural population in Georgia, in Arkansas, and in a couple of other states.
I’d like to turn to clinical trials. We know that clinical trials have halted enrollment, some clinical trials have. Some research labs have been closed, some cancer researchers are being pulled into COVID-19 research. Tell us a little bit about the current state of cancer research and then what is it going to take to recover after COVID-19 is no longer an emergency?
Almost all the cooperative groups have shut down accrual to most of their trials. People who are going on the trials for very aggressive cancers like the aggressive lymphomas and leukemias are still being enrolled, but the adjutant therapy trials and so forth have been shut down. At the major universities, the laboratories have all been shut down. At Hopkins we’re allowed to go keep our cell cultures alive, keep our lab animals alive, but we’re not doing any cancer experiments at least for the time being. So we’re all on ice, that’s gonna set us back for at least three to four months after the reopening. If we’re shut down for three months, this is a six-month shutdown, this is going to set us back six months.
This is a huge problem for all of cancer, there’s just no way of getting around it. I have no better answers. We do need to be in a position where we can start it up as quickly as possible afterwards. I have yet to see nurses and clinical trial specialists being laid off or anything by any of the major hospitals. But I’m worried about the hit that the major hospitals are going to take over time, and that could even causing more harm to what’s going on. This is—this is bad. It’s just bad.
Is there anything that we as patient advocates can be doing to advocate for that when the time comes that we can reopen? Sometimes we feel a little bit helpless here–we know it’s bad but what can we do to help?
Try to make sure that your congressmen and Senators have in their mind that they need to support the hospitals, they need to support the research infrastructures—it’s not just cancer, it’s HIV, it’s cardiac, it’s a number of other diseases as well. You make sure that the congressmen and Senators have that in mind. I’ve heard a lot more about bailing out the restaurants than I’ve heard about bailing out medical infrastructure—I support both by the way, I support bailing out both.
I have one last question for you, and this is the one I keep coming back to in our staff meetings, and in my own life with my kids: Do you see any silver linings here? And when we come through this emergency, any silver linings that will help the cancer care, cancer research, the cancer experience for cancer patients?
The medical community has come together and been united in a way that I haven’t seen. We didn’t have this one—I was a young doc when we had HIV come forth in the 1980s. We were not united the way we are today for HIV. I think a whole bunch of doctors went back and read what they put in their essays that they wrote when they were applying to medical school, and a whole bunch of us actually realized why we really should have gone into medicine. I think we’ve got a much greater respect for nurses and the laboratory personnel, even the folks who clean the floors in the hospital. I was very moved the other day, I heard that the chair of ENT at the Cleveland Clinic found that he couldn’t be helpful in patient care, and so he went and got a mop and bucket and was mopping the floor with the folks from housekeeping. I think the human aspect has come out of a lot of us, so that’s perhaps the one big positive.
NCCS thanks Dr. Brawley for sharing his time and expertise with us and providing us with clear and concise information. Watch the full interview at the top of this post.
Otis Brawley is a globally-recognized expert in cancer prevention and control. He has worked to reduce overscreening of medical conditions, which has revolutionized patient treatment by increasing quality of life and reducing health disparities.
Brawley’s research focuses on developing cancer screening strategies and ensuring their effectiveness. He has championed efforts to decrease smoking and implement other lifestyle risk reduction programs, as well as to provide critical support to cancer patients and concentrate cancer control efforts in areas where they could be most effective. Brawley currently leads a broad interdisciplinary research effort on cancer health disparities at the Bloomberg School of Public Health and the Johns Hopkins Kimmel Cancer Center, striving to close racial, economic, and social disparities in the prevention, detection, and treatment of cancer in the United States and worldwide. He also directs community outreach programs for underserved populations throughout Maryland.
Brawley joined Johns Hopkins University as a Bloomberg Distinguished Professor in 2019 from the American Cancer Society and Emory University.
https://canceradvocacy.org/wp-content/uploads/2020/04/Brawley-webinar-COVID-19-blog-img2.jpg6001200actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2020-04-15 12:33:072020-07-06 10:20:36COVID-19 and Cancer: A Conversation with Cancer Control Expert Otis Brawley, MD
We aim to make the Health Care Roundup a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.Your feedback is always welcome to make our content more useful to you. Please send comments to feedback@canceradvocacy.org.
How Should Patients Be Protected From “Surprise” Medical Bills?
The Latest: Democratic and Republican House staffers met with Speaker Pelosi’s office to try to protect patients from getting large “surprise” medical bills. There was no breakthrough, according to The Hill.
The Issue: Patients can receive extremely high medical bills during emergency situations when they are taken to an out-of-network hospital, or from out-of-network providers, even at an in-network facility or hospital. There is consensus about the problem, but not about the solution. Journalist and physician Elisabeth Rosenthal outlines in the New York Times the biggest roadblock: the players in the health care industry are at war over “who gets to keep the fortunes generated each year from patient illness.”
Rosenthal adds:
“So today your hospital and doctor and insurer — all claiming to coordinate care for your health — are often in a three-way competition for your money… Major sectors of the health industry have helped to invent this toxic phenomenon, and none of them want to solve it if it means their particular income stream takes a hit. And they have allies in the capital.”
Meanwhile: "All sides agree that patients should be protected," according to The Hill. Yet, the leaders of the House Energy and Commerce Committee and the House Ways and Means Committee have very different solutions and have put forward rival bipartisan bills.
For now, patients are still unprotected from surprise billing.
Affordable Care Act (ACA) Updates
Enrollment Experiment Yields Increases: California reinstated the individual mandate and expanded the ACA’s insurance subsidies in an experiment to see what happens when policymakers “beef up” the ACA. The result was a 41% increase in new enrollment.
Supreme Court Decisions Expected: Friend of NCCS and ACA expert, Katie Keith from Georgetown University, says the Supreme Court will issue at least two ACA-related decisions before July 2020. The issues — the risk corridors program and the religious or moral exemptions to the contraceptive mandate — could have implications that extend beyond the ACA.
NCCS CEO Shelley Fuld Nasso talked to Healthline.com about the fear of cancer recurrence.
“Sometimes [cancer survivors’] family and friends don’t understand the fear they live with. They think, ‘You’re done, everything is great.’ But the survivor always has that nagging thought in the back of their minds.”
NCCS CPAT advocates Jersi Baker and Liza Bernstein each shared their experience of facing multiple recurrences for the article.
Liza Bernstein: “The traumas of everything you go through, surgeries, toxic treatments, your life disrupted, your brain goes to, ‘I could go back to that or worse.'”
Jersi Baker: “My tagline that I always [Tweet] is ‘Live life now’ and I really believe that.”
A recent study suggests that people who survive childhood cancers are more likely to experience significant health problems, such as heart disease and recurring or new cancers, and die prematurely. The study’s lead author, Dr. Tara Henderson, director of cancer survivorship at the University of Chicago Comprehensive Cancer Center, said that with improved survival from childhood cancer, there is a need to focus more on long-term side effects of treatment.
Dr. Nathan Gray, assistant professor of medicine and palliative care at Duke University School of Medicine, reflects on the burdens of patients dying at home.
“While it might seem like more people spending their last days at home would be better for everyone, seeing the brutal realities of caring for a sick loved one at home has sobered my enthusiasm for sending people home to die.”
Health care is a top issue for many voters and, as Democrats fight over how best to cover more people, voters are worried about the COST of care — and for good reason. U.S. health spending is dramatically higher than other industrialized nations. Kaiser Health News explains health plans in the 2020 elections:
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We aim to make the Health Care Roundup a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.Your feedback is always welcome to make our content more useful to you. Please send comments to feedback@canceradvocacy.org.
Before Christmas, the Fifth Circuit announced its ruling in the ACA lawsuit, Texas v. US. The Fifth Circuit Court of Appeals, in a 2-1 opinion, upheld the District Court ruling that the individual mandate is unconstitutional. However, the Fifth Circuit remanded the case back to the District Court for a more careful consideration of the issue of severability. In effect, the Fifth Circuit directed the District Court judge to analyze each provision (including pre-existing condition protections) of the Affordable Care Act and determine whether it can stand, even if the individual mandate is considered unconstitutional. The District Court had previously ruled that the individual mandate was not severable from the ACA, so the entire ACA would be considered unconstitutional.
On January 3, a coalition of 20 Democratic Attorneys General filed a legal brief requesting that the Supreme Court immediately take up a challenge to the ACA, calling on the justices to decide the law’s fate on an expedited basis, before the presidential election in November.
NCCS joined with 24 patient groups in a statement endorsing the expedited Supreme Court review of the ACA case. View the statement »
Health Policy Experts Wary of Drug Importation Plan
In mid-December, the Trump Administration announced a plan to allow the importation of prescription drugs from Canada in an effort to reduce the cost of these medications.
Health policy experts are unconvinced that this strategy will help lower drug costs, or that it is even possible. Kaiser Health News reports that the plan is unlikely to work because Canada doesn't produce enough drugs, nor does it seem to be on board with exporting the ones it does have to America. Beyond that, experts say the president's plan will have little to no impact on what consumers pay for drugs. Politico outlines why importation is not the answer.
The American Cancer Society released their annual Cancer Statistics report. The study found overall cancer mortality dropped 2.2% from 2016 to 2017—the largest drop ever recorded in one year—thanks in large part to improvements in certain lung cancer and melanoma treatments. However, progress against other cancers has slowed, mainly due to obesity and persistent economic, geographic, and racial disparities in cancer care.
Support NCCS while shopping on Amazon. A portion of your Amazon purchases will be donated to NCCS when you choose NCCS as your AmazonSmile charity. Get started »
Dr. Otis Brawley discusses the recent drop in cancer mortality described in the American Cancer Society report, attributing the decline to immunotherapy and precision medicine advancements in lung cancer.
Immunotherapy is showing such a dramatic impact in the treatment of locally advanced and advanced non-small cell lung cancer that this effect elevates the statistics for all lung cancer and—this I find astonishing—you can even see its effect in age-adjusted cancer mortality overall.
Brain surgeons are using artificial intelligence (AI) to diagnose tumors accurately and much faster, according to a report in the journal Nature Medicine. "The new approach streamlines the standard practice of analyzing tissue samples while the patient is still on the operating table, to help guide brain surgery and later treatment."
Health policy expert Zeke Emanuel describes a hospital episode where his father received unnecessary interventions without taking the patient's or family's preferences into consideration.
It was easy for the hospital physician to call a neurosurgeon and neuro-oncologist and for them to assess my father early on a Sunday morning before I arrived. But when I asked if we could get my father a palliative-care consult on Sunday, the answer was a definitive no. All we got was the number of the hospital’s palliative-care service; we had to call the next day, during normal business hours, to arrange a future consultation.
Kansas Gov. Laura Kelly and state Senate Majority Leader Jim Denning announced Thursday that they have struck a bipartisan deal to bring Medicaid expansion to Kansas.
The expansion would make more than 100,000 Kansans eligible for health coverage through Medicaid. The plan does not include work requirements, but it does mandate a $25 a month premium for new enrollees—a detail that will require approval from federal regulators. Gov. Kelly’s goal is to pass the plan through the legislature this year so that new enrollees can begin coverage in January 2021.
Julie Rovner of Kaiser Health News was interviewed by “Detroit Today” about how health care is playing out in the 2020 presidential campaign and concerns over changes brought by the ACA. The conversation included focusing on rising health plan deductibles, Democratic candidates’ battle over a “Medicare for All” plan and the growing concerns about surprise medical bills.
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We aim to make the Health Care Roundup a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.Your feedback is always welcome to make our content more useful to you. Please send comments to feedback@canceradvocacy.org.
CMS Finalizes Medicare Payment Policies for CAR-T Therapies
CAR-T therapies, a cutting-edge type of immunotherapy, are seen by many as the next generation for cancer treatments. Of course, they are expensive and complicated to administer. The Centers for Medicare and Medicaid Services (CMS) recently announced long-awaited policies regarding payment for these treatments. CMS stated, “Medicare will pay for CAR-T therapies so long as they’re administered in health care facilities that follow the Food and Drug Administration’s special safety rules, known as risk evaluation and mitigation strategies, or REMS. Medicare will also pay for CAR-T even when it’s used to treat conditions that aren’t FDA-approved.” Read more on STAT News »
President to Unveil “Elaborate” Health Care Plan in September
The 2020 presidential race is well underway and will only heat up further this fall. There were rumors circling that President Trump wants to introduce health care initiatives that Republicans can use on the trail. Health care issues played a significant role in Democrats winning control of the House of Representatives in the 2018 elections. Those rumors appear to be true, as Bloomberg reports the president will announce an “elaborate” plan in a September speech. NCCS will continue to follow this and report what the plan entails and what it may mean for patients.
In previous Health Care Roundups, NCCS has highlighted the numerous health care proposals by states that can impact access to coverage. We originally shared this interactive map by the Commonwealth Fund with you last October. Now newly updated, the map is a useful resource to quickly find what your own state is doing. As always, if you have questions or concerns about policies implemented or being pursued in your state, please contact NCCS at cpat@canceradvocacy.org to see how you can help.
Support NCCS while shopping on Amazon. A portion of your Amazon purchases will be donated to NCCS when you choose NCCS as your AmazonSmile charity. Get started »
A young woman’s fiancée died of cancer after incurring considerable medical debt from his cancer treatment. She went on to become an oncologist, and she shared the heartbreaking reality of not only losing her fiancée, but facing the financial toxicity as a result, in a graphic novel. It is a moving and powerful piece that encapsulates the physical, emotional, and financial costs of cancer.
Continuing cancer treatment at the end of a life is a difficult topic and one that NCCS has been engaged in for many years to empower patients and educate providers. This is an insightful article that provides a caregiver’s perspective on making those difficult choices.
Screening for cancer has long been a controversial topic, as there is an ongoing debate regarding the short- and long-term benefits of cancer screenings in older adults. This article, authored by a geriatrician and associate professor of medicine at Johns Hopkins University School of Medicine, provides a good overview of the issues that must be considered in this debate.
NCCS has repeatedly voiced serious concerns about the dangerous implications of short-term health plans for cancer patients, survivors, or someone newly diagnosed with cancer. This article clearly outlines the basis for those concerns and reaches the obvious conclusion—they do not provide coverage for quality care.
As survivorship programs continue to grow in locations across the country, this article highlights an important consideration: culturally tailored programs. Carmina G. Valle, PhD, assistant professor of nutrition at the UNC Gillings School of Global Public Health and her team adapted a survivorship program to cater to the needs of the Hispanic community. “Latino/a cancer survivors’ needs may differ from those of survivors from other populations, necessitating the development of evidence‐based, culturally appropriate cancer survivorship programs.”
To help increase participation and retention in these programs, it is important to ensure they meet the needs of individual patients as much as possible:
“Using materials that are not culturally adapted might result in non-participation in programs or use of materials,” says Valle. “For example, if nutrition information isn’t tailored to culturally relevant foods, populations may not invest in dietary changes.”
At-home DNA analyzing services are on the rise, providing consumers interesting insights into their ancestry and health. However, as is often the case with new technology, these insights come with serious implications. This article highlights one such instance, and raises the question of what types of guidelines are in place to protect consumers.
Kathy Brandt, a palliative care expert, died of a rare form of ovarian cancer on August 4. Since her diagnosis, she and her wife shared every detail of their experience. Dr. Kimberly Acquaviva, professor at the University of Virginia School of Nursing, shared:
“My wife @Kathy_Brandt is a hospice and palliative care professional, as am I. She decided early on that she wanted us to share her dying process — all of it — publicly so that she could keep educating people about death and dying until her last breath.”
https://canceradvocacy.org/wp-content/uploads/2017/01/NCCS-Starburst-250px.png250250actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2019-08-16 16:41:512020-07-06 10:11:52Health Care Roundup: Medicare Payments for CAR-T; Cancer Screenings in Older Adults; Cancer and At-Home DNA Tests; End of Life Care; More
In order to bring you the latest cancer-related health care policy and news, we at NCCS combined our ACA Updates and What Caught Our Eye (WCOE) content into a weekly email and blog post. We aim to make the Health Care Roundup a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.Your feedback is always welcome to make our content more useful to you. Please send comments to feedback@canceradvocacy.org.
There was a steady stream of health care news this past week, including court rulings regarding Medicaid work requirements and association health plans, as well as a major shift in the administration’s position on the Affordable Care Act (ACA) lawsuit. Democrats introduced new legislation to strengthen the ACA on its 9-year anniversary. Here’s what you need to know about these developments:
ACA Lawsuit
The Justice Department announced that the Trump administration changed its position on the ongoing ACA lawsuit and agrees with the Judge’s December ruling that the entire law should be struck down. Previously, the administration wanted to strike down only the law’s protections for pre-existing conditions and the individual mandate. Should the courts invalidate the entire law, as the administration wishes, major protections for people with pre-existing conditions, Medicaid expansion, and caps on out- of-pocket limits would all disappear.
The New York Times reports on what would happen if the entire law is struck down: “The ACA touches the lives of most Americans. Some 21 million could lose health insurance if the Trump administration were to succeed in having the law ruled unconstitutional.” Furthermore, the administration took this position without offering any replacement health care plan should their efforts prove successful.
Medicaid Work Requirements Struck Down
On Wednesday, a federal judge blocked Medicaid work requirements in Kentucky and Arkansas, ruling that the policy would result in tens of thousands losing health care coverage. The rulings presented a serious setback for the administration as they made receiving government health coverage contingent upon work a central policy since taking office. So far, the administration allowed eight states to impose work requirements for Medicaid recipients and several other states are in the process of seeking permission to move forward with work requirements.
Association Health Plans
In another win in federal courts for supporters of the ACA, a judge ruled Thursday that the administration’s efforts to expand association health plans—plans that don’t meet coverage rules of the ACA—are illegal. “The final rule is clearly an end-run around the ACA,” said Judge Bates, an appointee of President George W. Bush. “Indeed, as the president directed, and the secretary of labor confirmed, the final rule was designed to expand access to AHPs to avoid the most stringent requirements of the ACA.” Association health plans do not have to comply with the ACA rules and regulations and have been called “junk plans” as they often do not include coverage for hospital visits, prescription drugs, maternity care, or other critical benefits.
Legislation to Strengthen ACA
On Tuesday, House Democrats introduced new legislation called the “Protecting Preexisting Conditions and Making Health Care More Affordable Care Act of 2019,” that would strengthen and expand upon the ACA. This bill includes several changes that would expand the availability of ACA subsidies to make plans more affordable to more consumers, would fund outreach and navigator assistance for the ACA, and fund state-based reinsurance programs. A one page summary of the legislation can be found here.
A useful graph that provides an overall snapshot of how health care costs increased compared to worker income from 2006 – 2016:
Support NCCS while shopping on Amazon. A portion of your Amazon purchases will be donated to NCCS when you choose NCCS as your AmazonSmile charity. Get started »
Author Aaron Carroll shares the personal experience of his close friend facing cancer and highlights the considerable time, and financial costs to his caregivers that are almost entirely overlooked.
Advocates with the National Coalition for Cancer Survivorship discuss their cancer experiences and reflect on how their care needs changed over the course of their care continuum.
This article describes a recent study looking at improving provider-patient communication in high-risk cancer diagnoses. The study authors conclude, “this cluster randomized clinical trial demonstrates that a communication quality-improvement intervention resulted in significant improvements in 4 key conversation indicators, including more, earlier, better, and more accessible oncology clinician–led serious illness conversations.”
What Caught Our Eye (WCOE), October 27, 2017 What Caught Our Eye is our week-in-review blog series, where we recap the cancer policy articles, studies, and stories that caught our attention.
Via New York Times — The rates for next year’s Obamacare plans are out, and they show how President Trump’s actions have scrambled the insurance marketplace. Usually, plans known as gold have higher monthly premiums but lower out-of-pocket costs than “silver” plans, which have tended to cost less each month and have been the most popular plans.
But this month, Mr. Trump carried out a longstanding threat and ended certain subsidies for insurers. To compensate for the lost funding, insurers increased the prices of their plans — heavily in the silver category and less so in others. Read More »
Via L.A. Times — There’s good news and bad news in the Congressional Budget Office’s analysis of the bipartisan Senate deal to save some Obamacare provisions from President Trump and his wrecking crew.
The good news is that the so-called Alexander-Murray compromise, named after its godparents, Sens. Lamar Alexander (R-Tenn.) and Patty Murray (D-Wash.), would accomplish its goal of reducing premiums and would even cut the federal deficit, without raising the number of Americans without health coverage. Read More »
Via Forbes Opinion — Trump and the GOP are doing their best to undermine the Affordable Care Act (aka Obamacare) and cause it to fail. One of their means of sabotage is by removing outreach and educational efforts, which are vital in getting people to enroll for health care. Read More »
Podcast from Vox.com — Sarah Kliff’s new podcast series, “The Impact” on Vox.com, examines how policy impacts lives. In this episode, she describes how two hospitals responded when children in their care died of central line infections. One examined its practices and made changes to reduce infections. The other did not. Listen Online »
By — With a broad overhaul of Obamacare stalled in Washington, one of President Trump’s top health care leaders is drawing the outlines of sweeping changes to Medicaid that could pare enrollments and cut costs without congressional approval.
Seema Verma, director of the federal Centers for Medicare and Medicaid Services, is promising to give states an “unprecedented level of flexibility” to design their Medicaid programs as they see fit. In an appearance in Cleveland this week, she pledged to reduce scrutiny of state requests for waivers from federal rules meant to preserve access and quality standards. Read More »
Via Forbes.com — You might have heard that many new cancer medicines offer little benefit. This month, the BMJ published a review finding that for most cancer drugs approved by the European Medicines Agency between 2009 and 2013, there was neither published evidence that they extend overall survival nor improve patients’ quality of life. In 2015, JAMA reported similar observations for oncology drugs approved by the U.S. FDA between 2008 and 2012. Both papers focused on evidence from randomized clinical trials.
…
Perhaps the literature fails to capture the clinical benefit of many oncology drugs. This could happen for several reasons. One is the under-appreciation that progression-free survival (PFS) can be truly helpful, permitting many people with advanced cancer to more comfortably go about their lives. Another is that randomized clinical trials (RCTs) may not be designed or statistically powered to reveal true benefits in small fractions of patients.
Via Kaiser Health News — As her husband lay moaning in pain from the cancer riddling his body, Patricia Martin searched frantically through his medical bag, looking for a syringe.
She had already called the hospice twice, demanding liquid methadone to ease the agony of Dr. Robert Martin, 66. A family practice physician known to everyone as “Dr. Bob,” he had served this small, remote community for more than 30 years. Read More »
Via Kaiser Health News — When Annie Dennison was diagnosed with breast cancer last year, she readily followed advice from her medical team, agreeing to harsh treatments in the hope of curing her disease. “You’re terrified out of your mind” after a diagnosis of cancer, said Dennison, 55, a retired psychologist from Orange County, Calif.
In addition to lumpectomy surgery, chemotherapy and other medications, Dennison underwent six weeks of daily radiation treatments. She agreed to the lengthy radiation regimen, she said, because she had no idea there was another option. Read More »
https://canceradvocacy.org/wp-content/uploads/2017/01/NCCS-Starburst-250px.png250250actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2017-10-27 17:37:492017-10-27 17:37:49What Caught Our Eye: ACA Premiums; Excessive Cancer Care; Saving Lives With Policy; Horrifying Hospice Care; Cancer Drug Efficacy; and More
What Caught Our Eye (WCOE), August 4, 2017 What Caught Our Eye is our week-in-review blog series, where we recap the cancer policy articles, studies, and stories that caught our attention.
Via New York Times — Congressional Republicans moved on Tuesday to defuse President Trump’s threat to cut off critical payments to health insurance companies, maneuvering around the president toward bipartisan legislation to shore up insurance markets under the Affordable Care Act. Read More »
Via The Hill — At least six states with GOP governors— Arkansas, Kentucky, Arizona, Maine, Wisconsin and Indiana — have already drafted plans meant to introduce new rules people would have to meet to be eligible for Medicaid, which provides healthcare to the poor. Read More »
Via Reuters — A U.S. appeals court on Tuesday allowed Democratic state attorneys general to defend subsidy payments to insurance companies under the Obamacare healthcare law, a critical part of funding for the statute that President Donald Trump has threatened to cut off. Read More »
Op-Ed By Ben Fishman, NCCS Board Member, for Washington Post — Eight years ago when the last national battle around health care was raging, one senator paid tribute to another who had just passed away: “I think we may have made progress on this health-care issue if he had been there. He had this unique capability to sit people down at a table together… and really negotiate, which means concessions.” The senator was John McCain (R-Ariz.), and he was referring to Ted Kennedy. In a cruel twist, McCain now has the same form of brain tumor, glioblastoma (GBM), that afflicted Sen. Kennedy (D-Mass.). Read More »
Via Health.com — About 1 in 3 reported low social functioning throughout the study period.
The researchers said the difficulties might stem from the transition from treatment to “off-treatment survivorship, a time fraught with challenges.” Those challenges include the negative impact of their disease and treatment on finances, body image, work plans, relationships with a spouse or significant other and plans for having children. Read More »
Via NPR Health — Even though advance directives have been promoted by health professionals for nearly 50 years, only about a third of U.S. adults have them, according to a recent study. Read More »
Via Washington Post — “The Senate on Thursday passed by unanimous consent a measure designed to make it easier for terminally ill patients to get access to experimental treatments without oversight from the Food and Drug Administration.” Read More »
Via The Hill — Senators voted overwhelmingly Thursday to pass a key Food and Drug Administration (FDA) funding bill, sending it to President Trump’s desk.The Senate passed a five-year reauthorization of the FDA’s user fees in a 94-1 vote, with Sen. Bernie Sanders (I-Vt.) voting against the measure. Read More »
Via Stat News — For the first time in history, the Food and Drug Administration plans to regulate the level of nicotine in cigarettes, attempting to bring it down to “non-addictive” levels. Read More »
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What Caught Our Eye (WCOE), April 14, 2017 What Caught Our Eye is our week-in-review blog series, where we recap the cancer policy articles, studies, and stories that caught our attention.
In the Spotlight
Published this week, Elisabeth Rosenthal’s An American Sickness: How Healthcare became Big Business and How You Can Take it Back describes the business of health care and how it fails patients. See her interview with Terry Gross on Fresh Air, as well as her tips for consumers to avoid unnecessary costs.
Via Politico — “Major health care and business groups — including the Chamber of Commerce, one of the Obamacare’s harshest critics — are growing increasingly anxious over the fate of the subsidy program. In a Wednesday letter, a broad coalition warned of a potential calamity if Trump doesn’t immediately rescue the subsidies.”
Via Fortune — “President Donald Trump is fond of saying that he will simply let Obamacare ‘explode’ (or implode, then explode). But the health law’s marketplaces are actually becoming more stable and may even churn out profits for some participating health insurers by 2018, according to a new Standard & Poor’s report.”
Via The Atlantic — “Before the ACA expansion, Medicaid served few working adults. That made it easy for critics to disparage it as a welfare program for poor families often implicitly portrayed as non-white. Now Medicaid not only serves more working-class adults, but also provides a lifeline to those mostly white, lower-income, rural, and small-town communities beset by rising health challenges and contracting economic opportunity.”
Via Forbes — “With the upcoming NFL draft, it hit us–rival franchises compete bitterly on the field every Sunday, yet have developed a structure that enables the entire enterprise to flourish, and profit. What if a similar philosophy could be brought to precision medicine, encouraging data sharing so that drug development and discovery are accelerated, while still allowing for competition and profit?”
Via The Washington Post — “This is not a recommendation that says men should go get screened. This is a complex decision. Some men will want to avoid the chance of dying of prostate cancer no matter what, while others, given the side effects, will not think the benefits are worth it,” said Dr. Kirsten Bibbins-Domingo, an internist at the University of California at San Francisco.
Via CNN.com — “Hopefully, we will all embrace shared or informed decision-making. Some men who are concerned about prostate cancer will elect to be screened, and others who are less concerned will not; doctors should support either decision. Once diagnosed, hopefully patients and their physicians will not rush into treatment but explore and consider all reasonable options,” said Dr. Otis Brawley, Chief Medical Officer of the American Cancer Society.
Via New York Times Well Blog — Our friend Dr. Susan Gubar discusses Dr. Jessica Zitter’s recent book, Extreme Measures: Finding a Better Path to the End of Life. Dr. Gubar writes, “In place of hope for recovery, Dr. Zitter emphasizes, ‘the miracle of time at home, of pain management, of improved quality of life. These are all concepts I’ve seen families embrace in place of survival – the only concept of hope previously imagined.”
https://canceradvocacy.org/wp-content/uploads/2017/01/NCCS-Starburst-250px.png250250actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2017-04-14 13:40:072017-04-14 13:40:07What Caught Our Eye: Costs of Care in a For-Profit System; New ACA Reporting; Precision Medicine; PSA Testing; End of Life Care
Last week we celebrated two individuals how have made cancer care better for survivors and their families—Dr. Richard Pazdur and Ellen Goodman. We were joined by survivors, advocates, researchers, innovators, and friends at our 2015 Focus on the Care reception in Washington, DC on Wednesday, October 21, 2015. In addition to our special attendees and honorees, we were also pleased to have Dr. Robert Califf, the Food and Drug Administration (FDA) Deputy Commissioner for Medical Products and Tobacco and President Obama’s nominee for FDA Commissioner, present Dr. Pazdur with the NCCS Public Service Leadership Award. The evening was also made special by the presence of Dr. Richard Sloan and Dr. Julia Rowland, who attended in support of the presentation of the inaugural Jessie Gruman Award for Patient Engagement to Ms. Goodman.
While receiving the Jessie Gruman Award for Patient Engagement, Ms. Goodman spoke candidly about the critical need to share our stories as our collective attitudes surrounding the experience of dying develop into a common human experience. Dr. Pazdur spoke of his work at the FDA as well as the call of the “patient cry.” Both speeches can be viewed in the videos below.
Ellen Goodman Accepts the 2015 Jessie Gruman Award for Patient Engagement
Dr. Richard Pazdur Accepts the 2015 NCCS Public Service Leadership Award
https://canceradvocacy.org/wp-content/uploads/2015/10/Ellen-Goodman-Acceptance-Speech.jpg852853actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2015-10-28 15:56:372015-10-28 15:56:37Celebrating the 2015 NCCS Focus on the Care Honorees in Pictures and Video
“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”
—Karen M. Saunders
President, Northeast Regional Cancer Institute
NCCS CEO Shelley Fuld Nasso moderated the discussion. “We knew exactly who we wanted to be our first guest speaker in this series. Dr. Otis Brawley is a Bloomberg Distinguished Professor at Johns Hopkins University, an oncologist and an epidemiologist. He’s also a truth teller, a myth buster, a straight shooter, and an all-around nice guy. When we called him last week to ask for advice on how we can best serve cancer patients during the scary and unpredictable season, his response was simple. ‘Just be honest with them,’ he said.”
