Care Planning Archives - NCCS - National Coalition for Cancer Survivorship

NCCS Survivorship Survey: Cancer Survivors Share Their Top Concerns

September 15, 2019/in Cancer News, Cancer Policy Blog, NCCS News Access to Care, Care Planning, Financial Toxicity, Health Care Coverage, Health Equity, Quality Cancer Care, Survivorship Care NCCS News /by actualize

As part of its Elevating Survivorship initiative, the National Coalition for Cancer Survivorship (NCCS) fielded an online survey to understand cancer survivorship experiences and needs across a range of cancer patients.

NCCS and our partner patient advocacy organizations promoted the survey to our constituents, and 1,380 cancer survivors responded.

Some of the key findings include:

Treatment Experiences

Patients report many physical and emotional side effects (See Figure 1). Fatigue and anxiety top the list of both the most common and long-term effects. These are also among the most severe side effects reported by patients.
However, patients report that while healthcare providers are helpful at addressing their physical side effects such as nausea and vomiting, health care providers (HCPs) are far less helpful at addressing fatigue, anxiety, depression and cognitive effects.

I do wish that my health care team did more to address the emotional side effects, particularly in screening for it. I developed a lot of anxiety, but I just thought it was normal. Only in retrospect did I realize I had a problem.Survey Respondent

Post-Treatment Information and Care

Few feel very prepared for the transition to post-treatment, nor informed about how to manage their health post-treatment.
While most patients have spoken to a healthcare provider about post-treatment care, over half say they asked their doctor/HCP, and far fewer say their provider initiated these conversations.
Satisfaction with post-treatment care is varied, with few describing it as excellent. As a result, more rely on online sources for information rather than their HCPs.

I wish that my health care team would address survivorship issues and long-term effects of my cancer diagnosis. At this point I am just told to call if there are any changes in the way that I feel, this leaves me feeling uneasy and uncertain about the future of my health.Survey Respondent

Survivorship Needs

Figure 2. Click to expand.

When asked to identify their level of concern about a range of issues, financial issues tops the list (getting/keeping health insurance, having financial support), followed by managing ongoing side effects, uncertainty about the future, and having the energy to make it through the day.
There is clearly a disconnect between patient concerns and support from HCPs. Less than a third rate their HCP as “very helpful” on their top issues.
Many are interested in survivorship resources, especially programs for managing long-term symptoms, but few say these are available from the HCPs today (See Figure 2).

I would like to meet more cancer survivors. I feel now that I am a different person and that no one understands what I’ve been through. Most people think that because you survived, that you are great and not in need anymore. It would be helpful to have some friends who have gone through the same journey.Survey Respondent

ACCC and NCCS Joint Survey Report

The Association for Community Cancer Centers (ACCC) conducted a companion survey of its provider members, and the results of the two surveys were published in ACCC’s Oncology Issues journal:

Read “Elevating Survivorship: Results from Two National Surveys” [PDF] »

Read the Final Survey Report

NCCS thanks the following organizations for promoting the survey to its stakeholders: CancerCare, Fight Colorectal Cancer, Melanoma Research Alliance, Ovarian Cancer Research Alliance, the LIVESTRONG Foundation, Melanoma Research Foundation, Supporting Our Sisters Inc., Cancer Support Community, and LUNGevity.

Read the full final report of the Survivorship Survey below or download it here (PDF Document).

Grant funding for Elevating Survivorship provided by: Bristol-Myers Squibb, AbbVie, Pharmacyclics, Takeda, Celgene, Novartis, and Eisai.

Health Care Roundup: Cancer Care Planning Bill Introduced; Drug Pricing Measures Advance; Rural Hospitals Struggling in States that Did Not Expand Medicaid; More

August 2, 2019/in Cancer News, Cancer Policy Blog Access to Care, Affordable Care Act, Care Planning, Drug Pricing, Financial Toxicity, Health Care Coverage, Health Equity, Quality Cancer Care Health Care Roundup, NCCS News /by actualize

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.

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HEALTH CARE HIGHLIGHTS

Cancer Care Planning and Communications Act Introduced in the House

On July 23, the Cancer Care Planning and Communications Act (CCPCA), H.R. 3835, was reintroduced in the House of Representatives. The bill is sponsored by Rep. Mark DeSaulnier (D-CA) and Rep. Buddy Carter (R-GA), co-chairs of the Congressional Cancer Survivors Caucus. The CCPCA is NCCS’ top legislative priority as it would increase access to comprehensive cancer care planning for millions of Medicare beneficiaries. If implemented in Medicare, it is our hope that private insurers would adopt similar measures.

You can find more information about the CCPCA here. NCCS also recently hosted a webinar and created a toolkit about how to meet with your Members of Congress during the August recess and advocate for the CCPCA and other cancer care issues. Check out the webinar and toolkit »

Drug Importation Plan Announced

The Department of Health and Human Services (HHS) announced Wednesday an action plan for the “safe importation” of drugs. The plan has two parts. First, HHS would undertake a rulemaking process to establish a system for states and other entities to engage in drug importation from Canada. The second part of the effort would be to establish a pathway at the Food and Drug Administration (FDA) for manufacturers to import versions of drugs that they currently sell in foreign countries. Although many in the cancer community believe importation would not have a major impact on cancer drug access or pricing, the Trump Administration specifically mentions “cancer” in the second part of the plan.

To be clear, this is only the first step in a lengthy process, and NCCS will continue to monitor and report on any further developments.

Read the HHS press release announcing the plan »
For additional analysis, read this article from STAT News »

Senate Drug Pricing Package

Last week, the Senate Finance Committee approved a drug pricing bill by a vote of 19 to 9. However, the bill continues to face several serious challenges according to several reports. Republican Senators expressed concerns about the bill. The pharmaceutical industry lobbied aggressively against it on Capitol Hill this week. Democrats pledged that they would agree to floor action on the bill only if there is a vote on protecting pre-existing conditions and a vote on allowing Medicare to negotiate drug prices during consideration of the bill.

Needless to say, the bill’s fate is far from certain. Here is a Washington Post article with additional background and a Kaiser Health News report that focuses on the political challenges facing the package.

CHART OF THE WEEK

Rural hospitals foundering in states that declined Obamacare

GateHouse News

To be fair, the challenges rural hospitals and providers face began well before the passage of the Affordable Care Act (ACA). But as this map and the associated research shows, refusing the ACA hasn’t helped matters.

“The irony to me,” said John Henderson, who heads The Texas Organization of Rural & Community Hospitals and supports Medicaid expansion, “is that we’re paying federal income taxes to expand coverage in other states. We’re exporting our coverage and leaving billions of dollars on the table.”

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 »

IMPORTANT READS

Trump Administration Moves to Make Health Care Costs More Transparent

Kaiser Health News

Earlier this week, the Trump administration released a proposed new rule “that would provide consumers far more detail about the actual prices hospitals charge insurers.” There is ongoing debate regarding to what degree patients “shop around” for health care as consumers do for other goods and services. That said, more transparency to give patients—as well as employers and insurers for that matter—more information regarding costs could be a welcome step forward.

The new bipartisan Senate bill aimed at making Big Pharma lower drug prices, explained

Vox.com

This article looks at another drug pricing bill in the Senate, sponsored by Sens. Chris Van Hollen (D-MD) and Rick Scott (R-FL). As Vox.com explains it:

“Their new bill would require companies that have received research funding from the National Institutes of Health and other federal agencies to follow specific pricing restrictions for the drugs they are selling. If they don’t, they’d incur strict penalties.”

The bill only applies to new drugs, and not those currently on the market. With so much focus on this issue in Congress, it will be interesting to see if these and other drug pricing bills gain traction and get voted on.

Finding My Greater Purpose Through Patient Advocacy

CURE Magazine

The author shares her personal experience with cancer and how her journey motivates her, even more than thirty years later, to be a patient advocate.

Study: the US could have averted about 15,600 deaths if every state expanded Medicaid

Vox.com

We often highlight how critically important the Affordable Care Act (ACA) is to cancer patients and their families. This article discusses a recent study that shows the ACA’s impact on mortality more generally, saying:

“[The researchers] found that by the fourth year of Medicaid expansion, mortality rates in states that expanded the program were 0.2 percentage points lower than in states that did not.”

Health Care Roundup: ACA Lawsuit Update; Chronic Pain Study; “Have Cancer, Must Travel;” “Survivorship Issues Reshape a Researcher’s Career;” More

Health Care Roundup: Medicaid Work Requirement Studies; Care Coordination/Planning; Financial & Emotional Distress; Cancer in Firefighters; More

NCCS Applauds Introduction by Reps. DeSaulnier and Carter of Bipartisan “Cancer Care Planning and Communications Act”

July 23, 2019/in Cancer News, Cancer Policy Blog, NCCS News Access to Care, Care Planning, Health Care Coverage, Quality Cancer Care NCCS News /by actualize

Championed by NCCS, the bill would increase comprehensive cancer care planning for millions of Medicare beneficiaries.

Washington, D.C. – Today, Rep. Mark DeSaulnier (D-CA) and Rep. Buddy Carter (R-GA), co-chairs of the Congressional Cancer Survivors Caucus, introduced H.R. 3835, the Cancer Care Planning and Communications Act (CCPCA). A legislative priority of the National Coalition for Cancer Survivorship (NCCS), the bill would create a Medicare service to reimburse providers for time and resources used to create cancer care plans for Medicare beneficiaries.

“The Cancer Care Planning and Communications Act is a bipartisan effort that would significantly improve the quality of cancer care patients receive in Medicare,” said NCCS CEO Shelley Fuld Nasso. “Care planning, including the provider-patient discussions about cancer care, would go a long way to alleviating some of the anxiety patients experience before, during, and after treatment. The CCPCA would help both providers and patients with the tools and resources to manage and coordinate their care from active treatment throughout survivorship. NCCS commends Reps. DeSaulnier and Carter for their leadership in fighting for cancer patients and survivors, and we look forward to working with them to pass the CCPCA.”

“Medical breakthroughs are at an all-time high, but advancements in doctor-patient communications are not keeping pace. We know that less than half of all cancer patients feel adequately informed about their diagnosis. Without a written plan explaining treatments and expected symptoms, patients are often left with more questions than answers. As a cancer survivor, who is grateful to have a healthy and full life ahead of me, I hope that my experience and this legislation will help others better navigate a diagnosis. I am grateful for the support of my co-chair Congressman Carter on this effort,” said Congressman Mark DeSaulnier.

“As a pharmacist for more than 30 years, I have cared for many cancer patients and survivors and I also have personal experience dealing with my father’s battles with cancer,” said Congressman Carter. “I’ve seen firsthand that cancer patients should be focused on getting better instead of trying to navigate the complexities of their diagnosis without clear direction or knowing what to expect from their care, especially as cancer treatment choices become more advanced. I’m proud to introduce this legislation with my friend Congressman DeSaulnier to help provide a personalized written roadmap for patients as they fight against cancer through diagnosis, treatment and survivorship care.”

“We commend the Congressional Cancer Survivors’ Caucus co-chairs for advancing this important legislation,” said Louis M. Weiner, MD, director of Georgetown Lombardi Comprehensive Cancer Center. “It’s thrilling to be part of a new revolution of how we treat cancer using immunotherapies and many other transformative approaches to cancer therapy. We believe in research-inspired cancer care, and cancer care planning and communication is an integral part of ensuring that patients receive the right treatment at the right time. That’s what the Cancer Care Planning and Communications Act promotes.”

“Cancer survivors need all the support they can get, both during the early stages of diagnosis and treatment, but maybe, more importantly, once it is initially over. All levels of support can be greatly enhanced with a cancer care plan,” said Susan Leigh, a four-time cancer survivor and retired oncology nurse. “By promoting more in-depth discussions between providers and the families they care for, these plans act as roadmaps to identify risks, coordinate care, and reduce fears after treatment ends.”

Organizations supporting the CCPCA:

American Cancer Society Cancer Action Network (ACS CAN)
American Society for Radiation Oncology (ASTRO)
Association of Community Cancer Centers (ACCC)
CancerCare
Cancer Legal Resource Center
Children’s Cause for Cancer Advocacy (CCCA)
Colorectal Cancer Alliance
Georgetown Lombardi Comprehensive Cancer Center
Lacuna Loft
Laura and Isaac Perlmutter Cancer Center at NYU Langone
Leukemia & Lymphoma Society
LUNGevity Foundation
Lymphoma Research Foundation
Memorial Sloan-Kettering Cancer Center
National Coalition for Cancer Survivorship (NCCS)
National Patient Advocate Foundation
Susan G. Komen
Triage Cancer
University of Virginia Cancer Center
ZERO – The End of Prostate Cancer

Read additional information about the CCPCA »

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Health Care Roundup: Medicaid Work Requirement Studies; Care Coordination/Planning; Financial & Emotional Distress; Cancer in Firefighters; More

17 Patient Groups Urge Appeals Court to Uphold Health Care Law

Health Care Roundup: Medicaid Work Requirement Studies; Care Coordination/Planning; Financial & Emotional Distress; Cancer in Firefighters; More

June 21, 2019/in Cancer News, Cancer Policy Blog Access to Care, Affordable Care Act, Care Planning, Drug Pricing, Health Care Coverage, Quality Cancer Care, Shared Decision-Making Health Care Roundup, NCCS News /by actualize

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HEALTH CARE HIGHLIGHTS

New ACA Replacement Plan?

This week, President Trump hinted at his intention to introduce a new health care plan. Health care remains a very popular political issue among most voters. With widespread reports saying that many Republicans in Congress would rather not make health care or Affordable Care Act (ACA) replacement a top issue in the upcoming elections, it will be interesting to see whether the president follows through in the months ahead.

Direct-to-Consumer (DTC) TV Advertising Rule

In December, we shared information about a new rule from the Department of Health and Human Services requiring drug companies to post drug prices in television commercials. Experts have said that it’s unclear whether price transparency will have an effect on prices. Last week, several companies, including Amgen Inc., Merck & Co. Inc. and Eli Lilly and Co., and the Association of National Advertisers, file suit to block the rule. Amgen highlighted concerns regarding freedom of speech, and that the rule “may mislead patients and fails to take into consideration ‘differences among insurance, treatments, and patients themselves.’” (Stat News)

Medicaid Work Requirements

Two studies shed light on the new Medicaid work requirements. Researchers from the Harvard Chan School of Public Health reported on the initial results of Arkansas’ work requirements, the first implemented in the country. They found a significant loss in coverage, an increase in the uninsured rate, with no corresponding increase in employment rates.

“The idea of work requirements is to get people into new jobs and private insurance. But in our study that didn’t happen. We didn’t find any employment changes and instead we see Medicaid coverage rates dropping and more people without health insurance–usually because the process itself was confusing or beneficiaries didn’t even know about the new requirements,” said Benjamin Sommers, lead author of the study.

Additionally, the Commonwealth Fund reported that between 600,000 and 800,000 people could lose Medicaid coverage in nine states if proposed work requirements are fully implemented.

“Even if some people who lose coverage are able to reenroll later, coverage gaps will grow, potentially affecting health. This churning also drives up costs through higher administrative expenses and the greater costs of deferred care. The loss of Medicaid coverage also will shrink funding for health care, creating losses for safety-net hospitals and community health centers,“ wrote Leighton Ku and Erin Brantley.

2019 Scorecard on State Health System Performance

Commonwealth Fund

While former House Speaker Tip O’Neill is credited for saying “all politics is local,” a similar phrase could be made for health care. The quality and affordability of health care is increasingly being determined by where someone lives.

This analysis from the Commonwealth Fund used “recently available data to assess every state and Washington, DC on more than 40 measures of health care access, quality, efficiency, health outcomes and disparities,” and developed trends to see how your state improved or declined. See the interactive chart »

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 »

IMPORTANT READS

Cancer Survivors Deserve Coordinated Care

Scientific American

NCCS is a long-time proponent of coordinated care, since far too many patients and survivors today bear almost all responsibility to coordinate and advocate for the care they need. This article provides an excellent overview of the needs and challenges to make care coordination more universal.

Financial Hardship, Psychological Distress Hurting Working-Age Cancer Survivors, CDC Says

AJMC

A new report from the Centers for Disease Control and Prevention (CDC) sheds more light on the impact of cancer on working adults.

“More than a quarter of adults aged 18 to 64 years reported they had trouble paying bills because of cancer, and over one-third reported psychological distress, according to a report from the CDC.”

The report points out that since the number of Americans with a history of cancer are is expected to rise, these type of numbers will likely increase as well in the years to come.

Firefighters battle occupational cancer

CBS News

This CBS Sunday Morning News story looks at the troubling number of firefighters being diagnosed with cancer. “Since 2002, almost two out of every three firefighters who died in the line of duty died of cancer, according to the International Association of Fire Fighters.”

One theory for the cause is the types of toxins firefighters encounter due to changes in modern building materials. The article also points out the struggles many firefighters face to have their cancer care covered by workers compensation benefits.

Cancer survivorship plans mean an even better quality of life for patients

WKRC Columbus

A local news story in Ohio highlights another one of NCCS’ long-time priorities—cancer survivorship care plans. This is a great introduction to care plans which, when implemented correctly, can be an important resource for patients and their families to help with the transition from treatment to survivorship.

Cancer Survivors Predicted to Top 22 Million by 2030

WebMD

That’s the latest estimate in a new report from the American Cancer Society. Co-author of the report, K. Robin Yabroff, PhD, senior scientific director of health services research at ACS, said:

"People with a history of cancer have unique medical, psychosocial and economic needs that require proactive assessment and management by health care providers."

Dr. Yabroff shared more of her research on the costs and access to care in her presentation at NCCS’ Spring 2019 Cancer Policy Roundtable.

Health Care Roundup: ACA Erased Key Racial Cancer Disparity; ‘Survivor’ Debate; Isolation in Survivorship; Remembering Two Cancer Pioneers; More

NCCS “Not Persuaded” Drug Pricing in DTC Ads Will Improve Doctor-Patient Communication

Health Care Roundup: White House Proposes Health Care Cuts; NCI’s Sharpless to Head FDA; Care Planning; Patient Safety; More

March 15, 2019/in Cancer News, Cancer Policy Blog Access to Care, Affordable Care Act, Care Planning, Health Care Coverage, Quality Cancer Care Health Care Roundup, NCCS News /by actualize

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.

Subscribe to our email list and receive these updates in your email box each week »

HEALTH CARE HIGHLIGHTS

White House Releases FY 2020 Budget

Earlier this week, the White House released the President’s Budget. This year's budget proposes to repeal and replace the Affordable Care Act (ACA) and cap Medicaid, and cuts federal health spending by $659 billion over 10 years. The budget also proposes shaving $818 billion from projected spending on Medicare over 10 years and cutting nearly $1.5 trillion from projected spending on Medicaid. In place of the current Medicaid structure, President Trump’s budget would give states “market-based health care grants” over 10 years. Congress rejected this idea in 2017 as part of the Graham-Cassidy bill because it would essentially cap Medicaid and would not keep pace with rising health care costs.

As the New York Times reports, the budget is seen by Democratic leaders as dead on arrival and is unlikely to have much effect on actual spending levels, which are controlled by Congress.

NCI's Sharpless Named FDA Acting Commissioner

This week, it was announced that Dr. Ned Sharpless of the National Cancer Institute (NCI) will become Acting Commissioner of the Food and Drug Administration (FDA) once Dr. Scott Gottlieb steps down. Dr. Sharpless has served as director of the NCI since 2017, and is also chief of the aging biology and cancer section in the National Institute on Aging’s Laboratory of Genetics and Genomics. His research focuses on the relationship between aging and cancer, and development of new treatments for melanoma, lung cancer and breast cancer.

NCCS is pleased to have Dr. Sharpless join us later this month at our biannual Cancer Policy Roundtable event to hear more about his focus areas and new role at the FDA.

CHART OF THE WEEK

The President’s Budget Request

Centers for Medicare and Medicaid Services (CMS)

This year's budget proposes to repeal and replace the ACA and cap Medicaid, and cuts federal health spending by $659 billion over 10 years, as seen in the chart below:

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IMPORTANT READS

Survivorship Care Plans May Help Patients After Cancer Treatment

Oncology Nursing News

Deborah A. Boyle, MSN, RN, AOCNS, FAAN, editor in chief of Oncology Nursing News, talks about the importance of survivorship care planning. She admits that while there’s still debate concerning care plans, “there needs to be a communication tool for all stakeholders involved with cancer survivorship.”

Few Physicians Using CMS Advance Care Planning Codes

Medscape – (Free registration required to view article)

NCCS is a long-time proponent of advance care planning and palliative care. This article outlines how many physicians are not using advance care planning codes for Medicare beneficiaries, saying:

“The authors conclude that either clinicians are not having conversations with patients about their values and their life goals regarding their future healthcare, or they are having the conversations but are not billing properly or consistently for them.”

2019 Top 10 List of Patient Safety Concerns

Medscape – (Free registration required to view article)

The non-profit ECRI Institute recently released it’s “2019 Top 10 Patient Safety Concerns” report. “This was the second year in a row that diagnostic errors were flagged as the most serious safety challenge in ECRI's annual compendium.” The implications for the millions of cancer patients diagnosed each year, and the millions more in survivorship, are obvious.

State of Cancer Care in America (SOCCA): Reflections on an Inaugural Year

Journal of Oncology Practice

This editorial, published in the American Society of Clinical Oncology’s journal as part of their "SOCCA" series of articles, provides an oncologist perspective of cancer care in America.

The authors point out:

“The overarching message from this year’s SOCCA series is that cancer care teams are practicing in a complex health care delivery system. This complexity is driven by (1) reimbursement and financial challenges, (2) limitations of electronic health record (EHR) systems, and (3) the organization and geographic distribution of the workforce.”

Health Care Roundup: FDA’s Gottlieb Steps Down; Hearings on High Costs; Coping with Cancer’s Aftermath; Why Insurers Deny Claims; More

Health Care Roundup: Senate Hearing w/Pharma CEOs; Medicare for All Introduced; Logistical Toxicity; FDA Warns About Robotic Surgical Devices; More

Introducing PatientTrueTalk.com – A Way for Advocates to Directly Help the Newly Diagnosed

February 21, 2019/in Cancer News, Cancer Policy Blog Access to Care, Care Planning, Clinical Trials, Quality Cancer Care, Shared Decision-Making, Survivorship Care NCCS News /by actualize

Dan Engel

By Dan Engel
Founder, Patient True Talk

Before writing this guest blog for NCCS, I read some other blog posts to get a feel for what would be interesting to this audience. The December 20, 2018, post entitled “Remembering Jennifer Friar Groves” really moved me. I’m naturally drawn to stories of perseverance, of people who give way more of themselves than they rightfully should, especially during times of severe adversity. We can learn so much from these individuals about how to be a better person and help others. Reading Shelley’s tribute inspired me to try harder and make a bigger difference.

So with that, I’d like to share with you a new way to pay it forward and directly help the newly diagnosed.

Think back to that moment when you were told you have cancer. The doctor informs you of your treatment options and discusses whether surgery, radiation, chemotherapy, a clinical trial, or some combination thereof is the best path forward. Time is of the essence and you need to make a decision soon. Aside from the people in the room with you (your doctor, nurse and spouse/partner/caregiver/friend), where can you turn for objective advice?

“I believe that there are many survivors like myself who provide informal advocacy on an ad-hoc basis all the time, and who would love to be part of a more organized effort to help fellow patients and their families. The only thing missing is the technology platform to aggregate those survivors and their cancer experience. Patient True Talk fills that void.”

When I was first diagnosed with melanoma in 1999, there were few, if any, options. Whether they were helpful was another story. Some recommended I find a support group specifically for melanoma. What chance was there that I could find a support group nearby with an imminent meeting where there was someone in attendance who could relate to my specific situation? I didn’t think it likely and never sought one out.

Today, there are various online communities that offer support. Like a live support group, but you still need to hope that there is someone with relevant experience monitoring and reviewing your online community in the time frame you need. You may then need to wade through a multitude of responses to your post and hope there is helpful advice. I do believe these resources are extremely valuable. If you’re like me, however, you may want to cut to the chase and find someone who experienced exactly what you are facing, and then reach out for a private conversation to share information and have questions answered.

My name is Dan Engel and I founded Patient True Talk to solve this pressing issue. I am a stage four metastatic melanoma survivor who collectively has endured ten operations, gamma knife surgery on a brain metastasis, radiation treatment, six clinical trials and seven years of a maintenance clinical trial. I’d like to think that my medical record, and the fact that I’ve read and signed well over ten informed consent forms (one for each trial and each amendment), gives me some credibility as an expert on the cancer patient experience, with a particular focus on clinical trials.

When I was diagnosed and faced my first clinical trial, I desperately wanted to speak to someone who went before me. Among other things, I wanted to know about side effects, life during treatment, state of mind, pain, etc. Basically, everything I read about in the informed consent form. I wanted to know what to really expect from a patient’s perspective, not that of a nurse or doctor. I understood that my experience by definition would be different, but relished that opportunity to speak with a fellow patient. During the countless time I’ve spent in infusion rooms, I made sure to speak with anyone else who might need a friendly ear.

Launched last year, Patient True Talk is the only patient-to-patient registry where patients and/or their caregivers can create profiles with as much information as they feel comfortable sharing, and find matching profiles based on algorithms created by some of the country’s top clinical oncologists. Patients/caregivers can also search along their diagnosis/treatment parameters, refining their search based on the results provided. They can then send secure messages directly to those who they believe represent the closest match. Once a connection is made, the two parties can speak off-line and hopefully form a friendship. My profile is the first “patient advocate” included on the site.

I believe that there are many survivors like myself who provide informal advocacy on an ad-hoc basis all the time, and who would love to be part of a more organized effort to help fellow patients and their families. The only thing missing is the technology platform to aggregate those survivors and their cancer experience. Patient True Talk fills that void. To be effective, however, the site needs thousands of survivors who battled every type of cancer to register as “patient advocates” to be available for the newly diagnosed and/or their caregivers.

I’m so pleased that NCCS agreed to collaborate with Patient True Talk to expand its advocacy reach to impact individual patients. My call to action is this: if you are or know a survivor, please register or encourage others to register on PatientTrueTalk.com.

P.S. During my two years fighting Stage 4 melanoma, I formed and launched the Miracle League of San Diego, a non-profit organization that provides children with special needs the opportunity to play baseball in an organized league. If you’d like to learn more about my trials and tribulations (pun intended), check out my book at www.thrivingthrucancer.com.

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About the Author

Dan Engel was diagnosed with stage 4 melanoma in November 1998. He founded Patient True Talk in 2016 to solve one of the pressing issues patients and their caregivers face in the cancer world — a means to connect to other patients, especially when considering and deliberating over treatment options.

Note: The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

Health Care Roundup: New Health Care Bills; NCCS Co-Founder Susie Leigh on Life After Cancer; Oncology Care Model; Racial Disparities; More

February 15, 2019/in Cancer News, Cancer Policy Blog Access to Care, Affordable Care Act, Care Planning, Drug Pricing, Financial Toxicity, Health Care Coverage, Health Equity, Quality Cancer Care Health Care Roundup, NCCS News /by actualize

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.

Subscribe to our email list and receive these updates in your email box each week »

HEALTH CARE HIGHLIGHTS

Health Care Bills Discussed, ACA Lawsuit News

A group of Democratic lawmakers this week introduced legislation that would allow for a “Medicare Buy-In,” meaning Americans at age 50 could buy into the program for their health care coverage. Spearheaded by Sen. Debbie Stabenow (MI-D) and Rep. Brian Higgins (NY-26), the legislators say the main goal is to promote more affordable coverage.

Hearings on the ACA and drug pricing continued this week, as the House Energy and Commerce Committee held a hearing titled, “Strengthening Our Health Care System: Legislation to Reverse ACA Sabotage and Ensure Pre-existing Conditions Protections.” The hearing was centered around a series of bills that would address actions by the Trump administration to weaken the ACA’s markets and patient protections.

An important update in the Texas v. United States ACA lawsuit was announced on Valentine’s Day. Four additional states—Colorado, Iowa, Michigan, and Nevada—were granted their request to intervene in the lawsuit. The Fifth Circuit also denied a request for an expedited schedule. NCCS will continue to monitor and report on this important case.

CHART OF THE WEEK

The Out-of-Pocket Cost Burden for Specialty Drugs in Medicare Part D in 2019

Kaiser Family Foundation

While Congress takes a closer look at rising drug costs and considers options to reduce drug prices, the administration is releasing policy proposals that seek to do the same. One thing is certain: Out-of-pocket spending for prescription drugs, especially for cancer, are enormous.

Chart and Data Source: Kaiser Family Foundation

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 »

IMPORTANT READS

Life after cancer: More survivors living longer, facing new health challenges

USA Today

In this USA Today feature, NCCS co-founder Susie Leigh shares her experience with being diagnosed with cancer at 24. Since that diagnosis, she’s had breast, bladder and lung cancer, and developed congestive heart failure. Susie discusses how this impacted her life, the founding of the National Coalition for Cancer Survivorship, and the importance of furthering the understanding of survivorship issues throughout the cancer community.

What Is The Oncology Care Model, And Why Is The Evaluation Important?

Health Affairs

You may or may not have already heard of the Oncology Care Model (OCM). Either way, there’s a good chance it could become the future of how cancer care is delivered and important to understand the basics of the program. Organized by the Center for Medicare and Medicaid Innovation (CMMI), the goal is to “improve care coordination, appropriateness, and access for beneficiaries undergoing chemotherapy, while reducing total costs.”

This article is a good summary of what the OCM is, what it hopes to achieve, where it excels, and some of its shortcomings.

Opinion: How to fight the financial toxicity of cancer treatment

MarketWatch

We all understand the devastating financial impact a cancer diagnosis has on patients and their families. Recently referred to as financial toxicity, this article discusses it in-depth and offers some advice for patients and providers to help reduce this burden.

Racial Disparities in Cancer are Narrowing

National Public Radio (NPR)

A recent analysis by the American Cancer Society found that the gap in racial disparities in cancer are narrowing, with four major cancers declining more among blacks than among whites. Still, African-Americans bear a disproportionate share of the cancer burden in the U.S. and experience the lowest survival rates of any racial or ethnic group.

Health Care Roundup: Drug Pricing; Cancer Deaths Rise Globally; Health Care Champion John Dingell Remembered; Treatment at Home; “Survivor” Debate

Health Care Roundup: More Drug Pricing News; Clinical Trial Challenges; Trump Promises Action on Surprise Billing; Fake Cancer Cures; More

NCCS Webinar Video: “Understanding Fear of Cancer Recurrence”

October 29, 2018/in Cancer News, Cancer Policy Blog, NCCS News Care Planning, Quality Cancer Care, Survivorship Care NCCS News /by actualize

Those with a cancer experience are all too familiar with the anxiety that many experience wondering and waiting if and how cancer may return. New research is helping shed more light on what exactly “fear of cancer recurrence” means as a measurable patient outcome, psychological and emotional factors that may increase or decrease it, and what steps can be taken by patients and providers to help reduce it.

Joining us to discuss fear of recurrence is Sarah Reed, MSW, MPH, PhD, of the Betty Irene Moore School of Nursing at UC Davis. You’ll hear Dr. Reed discuss new research—including her own—that seeks to more clearly define fear of recurrence and its impact on cancer patients. Read more about Dr. Reed’s background below.

Fear of Cancer Recurrence Resources

Download the webinar slide deck [PDF]

Mindfulness-Based Stress Reduction (MBSR) – Dr. Reed mentioned MBSR during the webinar as a potential therapy to alleviate Fear of Cancer Recurrence. Below are links to resources and books she recommends on the topic.

The Center for Mindfulness at UMass Medical School has a website with number of resources about MBSR, including a searchable database where you can find an MBSR program near you.
Mindfulness-Based Cancer Recovery: A Step-by-Step MBSR Approach to Help You Cope with Treatment and Reclaim Your Life, by Linda Carlson, PhD, RPsych, and Michael Speca, PsyD, RPsych – Amazon.com link
Being Well (Even When You’re Sick): Mindfulness Practices for People with Cancer and Other Serious Illnesses, by Elana Rosenbaum – Amazon.com link
Here for Now: Living Well With Cancer Through Mindfulness, by Elana Rosenbaum – Amazon.com link

About the Presenter: Sarah Reed, MSW, MPH, PhD

Sarah Reed is a postdoctoral scholar in the Betty Irene Moore School of Nursing at UC Davis, mentored by Associate Dean for Research Janice Bell. Her research focuses on vulnerable populations and issues of health inequality, including the effect of health transitions on mental health, particularly in cancer survivors.

Reed’s ongoing work examines psychosocial concerns; specifically, fear of cancer recurrence and health behaviors in cancer survivors — addressing a significant gap in the understanding of the psychosocial health and related needs of the growing population of cancer survivors. She collaborates with a range of interprofessional researchers on projects aimed to improve health outcomes of patients with cancer.

Prior to joining the School of Nursing, Reed was an assistant professor in the Jane Addams College of Social Work at the University of Illinois, Chicago (UIC), where her work focused on cancer and issues related to racial, social and economic justice.

She has been a clinical social worker for close to two decades, most recently in the Adult Survivorship Program at the Dana-Farber Cancer Institute in Boston. There, Reed developed and managed psychosocial survivorship care and programs.

This webinar is presented by NCCS as part of our educational efforts for our Cancer Policy and Advocacy Team (CPAT) program. Learn more about the CPAT program »

Watch more CPAT Webinars »

What Caught Our Eye: ACA Auto-Enrollment; Lack of Care Plan Implementation; Second Opinions; ‘Cancer’s New Superheroes’; More

May 4, 2018/in Cancer News, Cancer Policy Blog Access to Care, Affordable Care Act, Care Planning, Clinical Trials, Financial Toxicity, Health Care Coverage, Health Equity, Quality Cancer Care, Survivorship Care NCCS News /by actualize

What Caught Our Eye (WCOE), May 4, 2018
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.

Affordable Care Act

“Making Heath Insurance Enrollment As Automatic As Possible”

I was pleased to join with bipartisan co-authors @standorn @FamiliesUSA and Jim Capretta @AEI to describe @Health_Affairs Blog how we can make health insurance more affordable and accessible: https://t.co/GjGQv0ylGz

— Lanhee J. Chen (@lanheechen) May 2, 2018

Via Health Affairs Blog — In December 2017, the Republican Congress, working with the Trump administration, repealed the tax penalties enforcing the Affordable Care Act’s (ACA) individual mandate, effective in 2019. Although the degree of the mandate’s efficacy is uncertain, its repeal is sure to lead to additional Americans going without coverage, exacerbating the instability that now affects the individual insurance markets of many states.

In this context, it is incumbent on federal and state policymakers to enact replacement policies for the ACA’s individual mandate. More fundamentally, the individual market’s core dysfunction remains in place: Many young and healthy consumers remain outside the market, increasing average risk levels and premiums, and leaving millions of people needlessly uninsured. Those enrollment choices involve the perception and the reality of unaffordable coverage, but they also reflect burdens of enrollment and plan selection that have an outsize impact on program participation.
Read More »

Cancer Policy

“The Forgotten Piece of Continuum of Care”

Years after their implementation, survivorship care plans are often an afterthought: https://t.co/WNq0FfHYbj #cancertreatment #cancersurvivors

— CURE Magazine (@cure_magazine) May 2, 2018

Via CURE Magazine — In 2005, the National Research Council and Institutes of Medicine published “From Cancer Patient to Cancer Survivor: Lost in Transition,” the first comprehensive document on cancer survivorship, which included 10 recommendations. First, it called for health care providers and patient advocates to recognize survivorship as its own, distinct phase of cancer care. The second recommendation advised that a survivorship care plan (SCP) be provided for all patients.
Read More »

“CDC Eyes Review of Gynecological Cancer Screens”

@CDCgov plans to review whether gynecologists should do more cancer screening before hysterectomies and other common procedures, according to sources. W/@jenniferlevitz. https://t.co/Q2AYr0s0E1

— Betsy McKay (@betswrites) May 3, 2018

Via Wall Street Journal — The Centers for Disease Control and Prevention plans to review whether gynecologists should conduct more cancer screening before common procedures such as hysterectomies, according to people familiar with the agency’s plans.
Read More »

“Paying For Value: Lessons From The Medicare Hospice Benefit”

In today's @Health_Affairs blog @JoanMTeno makes a very good point that the #Medicare #Hospice benefit design was optimized for an old cancer framework and the subsequent updates are tweaks to the same chassishttps://t.co/PVvokwHK7c

— David Anderson (@bjdickmayhew) May 2, 2018

Via Health Affairs Blog — The reimbursement system and the pathway of least resistance are aligned with “doing more” instead of focusing on in-depth conversations or formulating and executing plans of care that promote person- and family-centered care.
Read More »

Coping with Cancer

“Love Your Cancer Doctor? Get a Second Opinion”

Love Your Cancer Doctor? Get a Second Opinion https://t.co/9GuedSklKn

— NYTimes Well (@nytimeswell) May 2, 2018

Via New York Times Well Blog — You don’t think twice about getting multiple bids for a construction or plumbing project, so why hesitate on multiple “bids” for your health?

I learned the value of a second opinion a year and a half ago when two breast cancer surgeons presented me with very different treatment options.
Read More »

“The ‘Ross-Wonders’, Cancer’s New Superheroes”

This is such a great story. Well done! “In this case, it was the patients themselves who organized as a group” to launch a ROS1 study. “As far as I know it’s the first time that’s happened.” @GoldmanLisa @JFreemanDaily @lil_lytnin #lcsm #PrecisionMedicine https://t.co/JQNNeU1t8w

— Dave Bjork (@bjork5) May 3, 2018

Via Forbes — You’ve likely never heard the story of how three young women, who call themselves “ROS1ders” from a rare form of lung cancer they share, may be turning the nation’s 46-year-old war on cancer on its head. The women were diagnosed with a gene mutation called a ROS1 fusion. Less then 2 percent of lung cancer patients have that trait. They soon found out there was little research being conducted because of the difficulty in finding and collecting tissue samples. In other words they were stuck with existing treatments and a drug designed for other types of lung cancers. Their future did not look bright.
Read More »

“The Latest Look at FDA’s Breakthrough Designation Finds No Benefits from Cancer Meds”

STAT Plus: “The term breakthrough may also be used to justify exceptionally high prices.” https://t.co/i79FzhUvqx

— STAT (@statnews) May 2, 2018

Via STAT News — The idea of a breakthrough therapy was promoted to speed approvals of medicines that held promise for treating a life-threatening disease and demonstrated substantial improvement over existing drugs. However, a new study finds that while cancer drugs considered to be breakthroughs were approved more quickly, they were not safer, more novel, or more effective than drugs not given this designation.

The study examined 58 new cancer medicines that were approved by the Food and Drug Administration between 2012 and 2017. Of these, 25 — or 43 percent — received breakthrough therapy designation. The median time to a first FDA approval was 5.2 years for drugs that given a breakthrough designation versus 7.1 years for cancer medicines that were not considered to be breakthroughs.
Read More »

“Corners of the Immunotherapy Space are Getting Crowded. Is that a Problem?”

Five approved checkpoint-inhibitor drugs rev up the immune system to fight cancer. Forty-five similar ones are in clinical trials. https://t.co/ZeIGafFHjT

— STAT (@statnews) May 1, 2018

Via STAT News — There’s an overabundance of copycat drugs in the cancer immunotherapy space, with companies pouring millions into developing drugs that add only incremental value to patients.

That was the general consensus from a panel of biotech experts who spoke here Monday at the Milken Institute Global Conference — a commingling of Wall Street titans, policy wonks, industry leaders, and Hollywood elites. While excitement around harnessing the immune system to attack cancer is justifiable, they said, the way in which company resources are allocated in the immunotherapy space is skewed.

“The immuno-oncology field is too crowded,” said Pablo Legorreta, CEO of Royalty Pharma, a New York-based venture capital firm. “We don’t need 30 similar drugs, because a lot of them will become me-too drugs. And that’s not OK for patients.”
Read More »

More From “What Caught Our Eye” »

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Reps. DeSaulnier and Poe Introduce Bipartisan “Cancer Care Planning and Communications Act”

March 8, 2018/in Cancer News, Cancer Policy Blog, NCCS News Access to Care, Care Planning, Clinical Guidelines, Health Care Coverage, Quality Cancer Care, Shared Decision-Making NCCS News /by actualize

Advocated for by NCCS, the bill would increase comprehensive cancer care planning for millions of Medicare beneficiaries.

Washington, D.C. – Today, Rep. Mark DeSaulnier (D-CA) and Rep. Ted Poe (R-TX), both cancer survivors and co-chairs of the Congressional Cancer Survivors Caucus, introduced H.R. 5160, the Cancer Care Planning and Communications (CCPC) Act.

A longtime legislative priority of the National Coalition for Cancer Survivorship, the bill would create a Medicare code to reimburse providers for time and resources used to create cancer care plans for Medicare beneficiaries.

“The Cancer Care Planning and Communications Act is a tangible way to significantly improve the quality of care for cancer patients in Medicare,” said NCCS CEO Shelley Fuld Nasso. “Care plans before, during, and after treatment encourage communication between providers and patients, and help alleviate some anxiety at every phase of the care continuum. The CCPC Act would empower patients with tools to manage and coordinate their care from active treatment throughout survivorship. NCCS and our partners look forward to working with Reps. DeSaulnier and Poe to move the CCPC Act forward.”

“Cancer is an epidemic in our country. Approximately 1.7 million Americans will be diagnosed with cancer this year alone. As a cancer survivor myself, I know how difficult it can be to understand what the plan for a patients’ treatment is,” said Congressman Ted Poe. “This legislation takes a positive step forward by incentivizing doctors to help their patients understand their planned cancer care path and giving them the peace of mind, all cancer patients, and their families deserve.”

“As a cancer survivor, I know firsthand how important having a care plan is to receiving the best care possible,” said Lee Jones, a cancer survivor. “A care plan is not only critical to fostering communication between a patient and doctor, but it serves as a roadmap in helping navigate the difficult process of cancer diagnosis, treatment choices, and treatment management. This is particularly true for older survivors on Medicare, who also are dealing with risk of recurrence, secondary cancers and other health issues. I am proud to support the passage of the Cancer Care Planning and Communications Act, and hope it is quickly passed by Congress to help make sure all patients receive the best care possible.”

“We commend the Congressional Cancer Survivors co-chairs for advancing this important legislation,” said Donald L. Trump, MD, FACP, CEO and Executive Director of the Inova Schar Cancer Institute. “The data show clearly that personalized and coordinated care leads to better outcomes—including longer survival! Based on these data, our center is designed as a facility where patients will have a single location to see their interdisciplinary team—medical , surgical and radiation oncologists, nutritionist, genetic and psychosocial counselors, all collaborating on a personalized plan for each patient, a treatment plan specific to the genomics and proteomics of their tumor, specific to their pharmacogenomics as appropriate and a survivorship plan to maximize the chance for survival and good health following treatment. Cancer care is more and more complicated—and successful; it is critical that physicians and patients be full partners in their treatment, that the overall plan of treatment and post-treatment care be fully developed and communicated—that’s what the Cancer Care Planning and Communications Act is promoting.”

Patient and professional organizations supporting the CCPC Act:

American College of Surgeons Commission on Cancer; American Society of Clinical Oncology; Association of Community Cancer Centers; Association of Oncology Social Work; Cancer Legal Resource Center; Cancer Support Community; College of American Pathologists; Colon Cancer Alliance; Critical Mass; Fight Colorectal Cancer; Hematology Oncology Pharmacy Association; International Myeloma Foundation; Lacuna Loft; LIVESTRONG; Lung Cancer Alliance; LUNGevity Foundation; Lymphoma Research Foundation; National Brain Tumor Society; National Patient Advocate Foundation; Oncology Nursing Society; Pancreatic Cancer Action Network; Stupid Cancer; The Children’s Cause for Cancer Advocacy; The Leukemia & Lymphoma Society; Triage Cancer; West Virginia Oncology Society; Zero Prostate Cancer.

Cancer centers supporting the CCPC Act:

City of Hope National Medical Center; Dana-Farber Cancer Institute; Georgetown Lombardi Comprehensive Cancer Center; Laura and Isaac Perlmutter Cancer Center at NYU Langone;
Loma Linda University Cancer Center; Masonic Cancer Center; Memorial Sloan-Kettering Cancer Center; Moffitt Cancer Center; Norris Cotton Cancer Center; Rutgers Cancer Institute
Stanford Cancer Institute; The University of Kansas Cancer Center; The University of Kentucky Markey Cancer Center; The University of Texas MD Anderson Cancer Center; The University of Virginia Cancer Center; UC Davis Comprehensive Cancer Center.

# # #

Find more CCPC Act information and advocacy tools for contacting Congress ».

Some of the key findings include:

Treatment Experiences

Post-Treatment Information and Care

Survivorship Needs

ACCC and NCCS Joint Survey Report

Read the Final Survey Report

HEALTH CARE HIGHLIGHTS

Cancer Care Planning and Communications Act Introduced in the House

Drug Importation Plan Announced

Senate Drug Pricing Package

CHART OF THE WEEK

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Championed by NCCS, the bill would increase comprehensive cancer care planning for millions of Medicare beneficiaries.

Organizations supporting the CCPCA:

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HEALTH CARE HIGHLIGHTS

New ACA Replacement Plan?

Direct-to-Consumer (DTC) TV Advertising Rule

Medicaid Work Requirements

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White House Releases FY 2020 Budget

NCI's Sharpless Named FDA Acting Commissioner

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About the Author

HEALTH CARE HIGHLIGHTS

Health Care Bills Discussed, ACA Lawsuit News

CHART OF THE WEEK

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Fear of Cancer Recurrence Resources

About the Presenter: Sarah Reed, MSW, MPH, PhD

Affordable Care Act

Cancer Policy

Coping with Cancer

Patient and professional organizations supporting the CCPC Act:

Cancer centers supporting the CCPC Act:

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