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.”
Young Cancer Survivors Have Higher Risk of Severe Health Problems Later
New York Times
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.
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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
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.
The biggest health care bill of this session made it out of the House and is headed to the Senate, after a party-line vote late Thursday. The bill contains proposals to lower prescription drug prices and to help shore up the Affordable Care Act (ACA), making it politically tricky.
It is unlikely that the bill will pass a Republican-controlled Senate. As Politico reports, “The move is likely to force most Republicans to sink the package and go on record as opposing efforts to control drug costs.”
Here’s what’s in the bill.
The drug pricing pieces are generally bipartisan and include provisions to:
Address a backlog in the regulatory process that prevents more generic drugs from going on sale and bringing prices down.
Ban pay-for-delay agreements to prevent manufacturers from paying generic manufacturers to delay the generic product from entering the market.
Make it easier for generic manufactures to get the materials needed from brand-name drug makers to develop generic alternatives, known as the CREATES Act.
These policies are combined with ACA proposals including:
Money for states to set up their own insurance marketplaces.
Money to restore funding for ACA enrollment outreach and support, which was cut by the Trump administration.
Repeal of the administration’s expansion of “junk plans,” known as short-term, limited-duration plans.
Thankfully, the Affordable Care Act (ACA) expanded health care coverage for millions of Americans across the country. However, as this Kaiser Family Foundation/LA Times survey points out, access to health care does not necessarily mean affordability in many cases, as nearly fifty percent of respondents with coverage and a chronic condition faced difficulties affording their care. Progress was made, but there is so much more that needs to be done to truly ensure quality, affordable health care. Read the entire article here »
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Washington Post reporter and cancer survivor, Steven Petrow, shares his personal and moving experience with cancer and why he chooses to celebrate a “cancerversary.” Coined by NCCS years ago, the term really means whatever a patient, caregiver, or loved one decides is most comfortable for them. The article includes a quote from NCCS CEO Shelley Fuld Nasso.
American Cancer Society Cancer Action Network (ACS CAN)
NCCS opposed implementation of short-term, limited-duration health plans from the very moment they were proposed by HHS. This ACS CAN report provides further evidence of just how financially destructive they can be for anyone with these plans who are diagnosed with cancer. Offering these plans with limited to no transparency of the financial and health risks they pose is irresponsible.
With the cost of cancer care, and health care in general, there is more and more discussion about the importance of providers having cost of care conversations with patients.
However, as this article highlights, “little formal guidance is available on how to conduct these sensitive conversations in ways that are acceptable to both patients and providers.” It is an important step that everyone involved is open to having these critical conversations, but now we need to figure out the actual steps to do so that is best for everyone.
An interesting article that looks at the system-based intervention at the University of North Carolina Medical School that significantly reduced racial disparities for white and African American patients. Prior to this study, researchers looked at the underlying reasons why patients stop or delay treatment. Using that critical information, they then created this system that flagged issues for nurse navigators in a way that was most effective in reaching and communicating with patients.
After a metastatic ovarian cancer diagnosis, a couple—who are both experts in palliative care—decides to pursue aggressive palliative care, forgoing treatments such as chemotherapy or radiation. It’s a choice made by fewer than 2% of patients facing the disease.
"I want to minimize the time I’m at the doctor. If it’s not going to save my life, then why would I go through trying to get an extra month, when that month leading up to it would be terrible?"
https://canceradvocacy.org/wp-content/uploads/2017/01/NCCS-Starburst-250px.png250250actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2019-05-17 15:53:192020-07-06 10:11:54Health Care Roundup: House Passes Health Care Bill; Celebrating a Cancerversary; Palliative Care; Cutting Racial Disparities; 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:
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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.”
With great sadness, we mourn the passing of former NCCS Board Chair Richard Payne, MD, on January 3.
Dr. Payne was a member of the NCCS Board of Directors from 2005 to 2012; he served as Board Chair from 2010 to 2011. Thoughtful, deliberative, and soft spoken, Dr. Payne was a valued and collaborative leader of NCCS. A lover of books and golf, he was always attentive and generous to his extended family, both personal and professional.
Dr. Payne was Professor Emeritus of Medicine and Divinity at Duke University Divinity School and held the John B. Francis Chair at the Center for Practical Bioethics. An internationally-recognized expert in palliative care, Dr. Payne devoted his career to making quality palliative care standard practice for people with late-stage illness.
He testified before the Congressional Black Caucus National Brain Trust and the President’s Cancer Panel on healthcare access disparities in cancer care, palliative medicine, and end-of-life care. He received many awards for his work, including a Distinguished Service Award from the American Pain Society; the Humanitarian Award from the Urban Resources Institute; and the Janssen Excellence in Pain Award.
A graduate of Yale College and Harvard Medical School, Dr. Payne served as Chief of Pain and Symptom Management Sections, Department of Neurology at M.D. Anderson Cancer Center (1992-1998), and he led the Pain and Palliative Care Service at Memorial Sloan Kettering Cancer Center (1998-2004).
Dr. Payne frequently noted that he valued the opportunity and privilege to journey with cancer survivors at the end of their lives. He understood the need to provide coordinated, compassionate care to the whole family, which he taught in clinical practice and in academia. We will deeply miss his friendship and passionate advocacy.
If you would like to share a remembrance of Dr. Payne, please leave a comment in the box below.
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By Shelley Fuld Nasso
NCCS Chief Executive Officer
I’d like to share the story of my dear friend, Jennifer Friar Groves, who died earlier this month at the age of 32 from metastatic breast cancer. She gave me her permission to share her story, and in fact, she desperately wanted her story to be shared.
Jennifer was diagnosed with breast cancer in April 2016 at the age of 29. She lived in Booneville, Mississippi, in northern Mississippi near Tupelo. She was too young for regular breast cancer screening, but she found a lump and saw her doctor. She said that she wasn’t taken seriously at first because of her age, but one thing I learned about Jennifer is that she was incredibly persistent and knew how to advocate for herself. She continued to press for answers because the lump was so painful she was having trouble sleeping. She had a 10 cm tumor and was eventually diagnosed with an aggressive, Stage 3B breast cancer.
Soon after her diagnosis, she lost her job because of the time off from work. She did not have insurance at the time. She eventually was approved for Social Security disability benefits and Medicaid, but for the first six months of her cancer treatment, she remained uninsured.
She began chemotherapy and cut her hair before her treatments began. Before cancer, she was known for changing her hair styles, so instead she turned to elaborate head wraps using scarves and even t-shirts, to express her style.
Jennifer was creative in her use of head scarves and loved to share with other cancer patients.
It sucks, but through it all, I smile and remain humble! So many people love me, look up to me, support me and are praying for me, so why give up now? I’ve made it too far to give up now!Jennifer Groves
Chemotherapy was brutal, and she ended up in the hospital with an infection. But the tumor responded well to chemotherapy. In August 2016, she had a left mastectomy. She was in and out of the hospital for two months with a skin infection after her mastectomy.
By October 2016, scans found a spot on her liver, and she learned the cancer had metastasized. She had radiation to the liver and more chemotherapy. She had blood clots in her arm and a pulmonary embolism.
Jennifer attended Camp Bluebird, a getaway for cancer patients and survivors in Alabama.
In 2017, she learned the cancer had spread to her brain. She continued her treatments and became an advocate with several different cancer organizations. She attended Camp Bluebird for cancer survivors in Alabama. She developed a network of other breast cancer survivors and shared her experience on Facebook.
I met Jennifer in April 2018 at the Living Beyond Breast Cancer (LBBC) Conference on Metastatic Breast Cancer in Philadelphia. Jennifer attended the conference and training as part of LBBC’s “Hear My Voice” program, and she recorded an interview, which was used in a video featuring young women with metastatic breast cancer. It was her first time on a plane, and she loved visiting Philadelphia and spending time with other women with metastatic breast cancer.
I was on a panel at the conference discussing public policy advocacy, and Jennifer stood up and shared her positive experience with Medicaid covering her cancer care. She was grateful for Medicaid coverage and the fact that she did not have to fight for coverage of her treatments, like so many people with commercial insurance.
Jennifer at the April 2018 LBBC Conference on Metastatic Breast Cancer.
I spoke with her afterward, thanked her for sharing about Medicaid, and asked if she would be willing to share her experience in other settings as well.
NCCS spent most of 2017 fighting efforts to repeal the Affordable Care Act (ACA). While most of the attention was on protecting people with pre-existing conditions, we were also concerned with protecting Medicaid, as some versions of the repeal legislation would have gutted Medicaid, and not just the Medicaid expansion that was part of the ACA. Thus, we were always looking for cancer patients and survivors who would share their Medicaid experience with policymakers and the media, so that we could highlight the vital role Medicaid plays for so many cancer patients. Jennifer and I exchanged emails, and our friendship began.
Jennifer and Shelley.
In her first email to me, she wrote:
“I depend solely on Medicaid and I also can’t work so I also receive Disability SSI once a month and that’s my only income. I would love to speak out more about Medicaid and my experience because I’ve never done that before. Last week was my first ever talking about Medicaid and my experience. I didn’t realize that other survivors had it so hard as far as insurance, Medicaid and Medicare.
“I now want to be more vocal and help everyone – not just breast cancer but all cancers. I’ve just had a good experience with receiving everything I needed! I just really wish it was like that for everyone else. I would love to work with you in every way possible to speak about Medicaid, my experience and just help others. Be that voice, be that advocate for everyone, be that leader. I’ve already made a few appointments with my city mayor and alderman. I’m working on getting a meeting with Mississippi senator and governor.”
She went on to create a Facebook group for Medicaid and All Cancers, and she joined NCCS’ Cancer Policy & Advocacy Team (CPAT). She received a scholarship to attend the CPAT Symposium in June and made plans to come to Washington, DC. You see, despite everything she was going through, she always wanted to advocate for others and help people less fortunate than her.
Jennifer at the 2018 CPAT Symposium with fellow advocates Yvonne Florence and Loretta Herring.
In June 2018, a week before her trip to DC, she posted a video on Facebook of her hula hooping at a Relay for Life event in Mississippi. Then suddenly, she began to lose mobility as the tumor in her brain grew. She fell in her apartment, hit her head, and was hospitalized.
Yet, she was still determined to come to Washington, meet her Senator, learn about policy issues, network with other advocates, and share her story. Traveling alone was difficult for her, but she used her advocacy skills, polite manners, and Southern charm to enlist airport, flight, and hotel staff to help her get from point A to point B. While she did not like to ask for help, she was willing to do so in order to get what she needed.
While in DC, she met with Senator Roger Wicker of Mississippi, and his supportive and friendly staff members gave us a tour of the Capitol. She loved meeting other advocates, and she gave tutorials to other cancer survivors on how to create their own head wraps. Before she flew home to Mississippi, I gave her a driving tour of some of the Washington, DC—highlights. She wanted to see the White House, and we got as close as we could by car, since she was not able to walk far. She did manage to walk to see the Martin Luther King, Jr. Memorial near the Tidal Basin.
Jennifer’s June 2018 trip to Washington, DC, and her meeting with Senator Roger Wicker.
When she returned to Mississippi, she had several more falls, was hospitalized again, had physical therapy to try to improve her mobility, and considered the possibility of surgery to remove her brain tumor.
Despite her own hardships, she continued to focus on how she could help others. She created a cancer support group in her hometown, with the first meeting at the end of July. After the meeting, she shared with me the difficulties other people were facing and her resolve to help them as much as she could.
In August, I visited Jennifer in Mississippi, and we spent the weekend going out for dinner, a movie, and a pedicure (her first!); giving ourselves facials; and hanging out and talking. Soon thereafter, she made the difficult decision to enter hospice care. With hospice care, she finally got the support that she needed—support that I believe could have helped her much earlier in her cancer treatment.
Jennifer faced so many barriers during her cancer experience. As a young woman, she felt like people did not take her disabilities as seriously as they should because they were not used to a young woman being as sick as she was or needing as much help as she did. Additionally, it was very difficult for Jennifer to ask for help, because she wanted to maintain her independence. Transportation was a challenge, and she relied on Medicaid to provide transportation to her appointments that were an hour, or in the case of Jackson, three hours, from her home. While she was incredibly grateful for her Medicaid and disability benefits, they did not cover all her expenses, adding to the burden of living with cancer.
Through it all, Jennifer remained grateful, positive, and determined. She was a dear friend to me, and I miss her terribly. I learned from her about grace, strength, friendship, and love.
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Photos courtesy of Jennifer Groves and Leslie Danielle Phillips
Be that voice, be that advocate for everyone, be that leader.Jennifer Friar Groves
https://canceradvocacy.org/wp-content/uploads/2018/12/Jennifer-Groves-SM.jpg6301200actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2018-12-20 16:07:322018-12-20 16:07:32Remembering Jennifer Friar Groves
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 this 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.
Trump Admin Continues Push to Make Short-Term Health Plans More Acceptable
On Wednesday, the Trump administration made it easier for short-term plans to reach more consumers in another move to try to halt further ACA progress. While short-term plans are inexpensive, they do not cover pre-existing conditions and the range for medical services is much more limited. Opponents fear that this newly issued rule will further destabilize the market, making it harder for sicker individuals to receive the quality and timely care they need.
In a HHS press release, Secretary Alex Azar noted:
These plans aren’t for everyone, but they can provide a much more affordable option for millions of the forgotten men and women left out by the current system.
Simply stated, these plans are cheaper because they are “junk insurance.” Opponents to the finalized rules have stated they will continue to fight against these changes and to ensure that marketplaces will remain stabilized.
NCCS said in a statement regarding the final rule:
NCCS is concerned that individuals will buy short-term plans thinking they are getting a good deal until the moment they need health care services, or worse, face a diagnosis of cancer, when they will be stuck with enormous out-of-pocket costs. These plans are NOT a substitute for the comprehensive health coverage that the ACA ensures. By expanding and promoting short-term limited-duration plans, the administration is taking patients back to the days when insurance companies denied individuals who are sick and excluded coverage for the care that cancer survivors need.
Reinsurance programs have been introduced as a way to help stabilize the ACA’s individual markets. Earlier this week, the Centers for Medicare and Medicaid Services (CMS) approved Wisconsin’s and Maine’s decision to move forward with the next steps for creating reinsurance programs. Alaska was the first state to apply for approval to establish a reinsurance program for the state in 2017. Several other states have already been approved and a few other states who have applied are waiting for approval.
In a letter to Gov. Scott Walker for adopting the program, CMS wrote, "[The] reinsurance program will lower individual market premiums in the state and the premium tax credits (PTC) to which Wisconsin residents would have been entitled absent the waiver."
While the reinsurance programs are not a long-term solution to the issues facing the ACA, more states will continue to create these programs as a simple fix in the short-term.
Austin Frakt, director of the Partnered Evidence-Based Policy Resource Center at the V.A. Boston Healthcare System, goes into depth about the inadequacies of health care shopping. He points to multiple bodies of research that indicate people do not know how to properly shop for care, unintentionally turning down necessary care when attempting to cut out excessive care. Complexity of navigating the system and lack of time in searching for the right care are also factors in why health care shopping is not wholly effective. Frakt proposes several options, including how to utilize physicians to better inform patients.
A newly released report from the Office of Inspector General (OIG) at HHS reveals oversight issues in hospices. The report highlights the troubling trend of poor hospice care, most notably instances of elderly patients left in unbearable pain or respiratory distress, untimely and inadequate care, and persistent fraud.
The report urged CMS to take action, recommending 15 action steps. However, CMS Administrator Seema Verma objected to eight of the actions steps proposed by the OIG but approved of six recommendations. It is especially important to find solutions to these ongoing hospice care problems since the aging population of the U.S. will rely more and more on hospice care.
In an opinion piece on STAT news, three authors make the case for why mergers do more harm than good. In their study, they propose that mergers do not ensure better patients care, but in fact increases the risk of harm. Three key sources of risk are identified: new patient populations, unfamiliar infrastructure, and new settings for physicians. While acknowledging that mergers and acquisitions will continue to speed up, the researchers also emphasized throughout the article the necessity of clinical experience and input in evaluating risks to patients in the health system merger planning process.
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“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.”
Jennifer’s June 2018 trip to Washington, DC, and her meeting with Senator Roger Wicker.
Despite her own hardships, she continued to focus on how she could help others. She created a cancer support group in her hometown, with the first meeting at the end of July. After the meeting, she shared with me the difficulties other people were facing and her resolve to help them as much as she could. 
