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Health Care Roundup: Insights on Telehealth, Decline in Medical Visits, Standards of Care, and More

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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.

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

If you have any cancer-related questions or concerns about COVID-19, please reach us at www.canceradvocacy.org/contact.

HEALTH CARE HIGHLIGHTS

NCCS Updates

Register for First-Ever Virtual CPAT Symposium

Cancer survivors’ stories can shape how decision makers provide quality cancer care to millions of cancer survivors. That is why NCCS invites cancer advocates from around the country to register for the annual Cancer Policy and Advocacy Team (CPAT) Symposium virtually, on June 15-16 and June 22-23 from noon to 3 p.m. ET, including a virtual Hill Week June 22-26.

We will host three different tracks so attendees choose their own Symposium experience—whether they are a brand-new advocate or a seasoned Symposium attendee. Attendees will also:

  • Hear from health care and policy experts about managing stress and anxiety, how to “return” to work, and the future of cancer care;
  • Participate in a roundtable on what survivorship means for people with metastatic cancer and help shape the conversation around metastatic survivorship;
  • Hear from Washington insiders about health policy during the COVID-19 pandemic;
  • Prepare for and attend meetings with Congressional staff through the virtual Hill Week June 22-26.

Register for this event today »

We encourage you to invite others to register. The Symposium is exclusive to CPAT members, which is free and easy to join!

NCCS Project Aims to Gain Cancer Survivors’ Insights on Telehealth

This month, NCCS launched a project to identify and share cancer patients’ and survivors’ perspectives on telehealth—the use of telephone or video conferencing for medical appointments—in cancer care. The COVID-19 pandemic has led to dramatic and rapid increases in the adoption of telehealth, and NCCS wants to ensure patient voices are heard.

Learn More »

2020 Elevate Ambassadors Selected to Improve Survivorship Care in Local Communities

NCCS is proud to announce the selection of 14 patient advocate leaders to serve as Ambassadors for the 2020 Elevating Survivorship program. Elevate Ambassadors will receive support, mentorship, networking opportunities, and virtual training from NCCS to develop and execute a plan of action to improve survivorship care in their community—whether for a hospital, oncology practice, community-based organization, or virtual community.

Learn More »

Policy Updates

Senate Nixes Fourth COVID-19 Stimulus Package

Last week the House of Representatives passed the Health and Economic Recovery Omnibus Emergency Solutions Act, or the HEROES Act, the fourth COVID-19 stimulus package. However, Senate leadership announced it was dead on arrival and that their version “would look nothing like the House’s Democrat bill.” NCCS has been working alongside other patient groups to meet with Congressional offices to share patient priorities during the pandemic.

We were pleased to see some of these priorities were included in the House bill, including a special enrollment period for the Affordable Care Act (ACA), funding for state Medicaid programs, expansion of paid leave provisions, and assistance for people who lost employer-based coverage. We will monitor this bill as it moves through Congress and update you on provisions that will impact patients and their access to health services.

Otis Brawley, MD on Paid Family Medical Leave

Yesterday, friend of NCCS and Bloomberg distinguished professor, Dr. Otis Brawley, provided his expertise in a virtual Congressional briefing on paid family medical leave. In last month’s Health Care Roundup we included a legislative alert so that advocates could take action on this important issue and let Congress know cancer patients need to be included in paid leave.

CHART OF THE WEEK

Paid Sick Leave Could Be a Deciding Issue in November’s Key House Races

Vox.com

This survey finds paid sick leave as a top issue for voters. “There are restaurant workers, there are people who work for fortune 500’s who don’t have a paid sick day, there’s home health workers,” says Paid Leave for All Action Director Dawn Huckelbridge. “If we’re not giving people these protections, we’re going to be forcing them to choose between their life and their livelihoods.”

Read More »

WHAT WE’RE LISTENING TO

Cancer Convos PodcastNCCS Podcast: “Cancer Convos.” In the latest episode of “Cancer Convos,” Senior Policy Manager Lindsay Houff talks to Jamie Ledezma, an attorney who specializes in cancer rights. Jamie discusses how health policy is changing at a rapid pace, at both the state and federal levels.A cancer survivor herself, Jamie also shares what it’s like as a patient navigating the health care system during COVID-19 and provides advice for fellow patients who are looking for answers. During the conversation, Jamie mentioned a health insurance resource page from Triage Cancer, an organization that focuses on cancer patient rights and advocacy.

Listen and Subscribe to Updates »
Listen to the Episode on SoundCloud »

Bipartisan Health Experts Send Letter to Congress

In an NPR interview, Scott Gottlieb, former head of the FDA, and Andy Slavitt, who led the Centers for Medicare and Medicaid under Obama, talk about their plan to reopen the U.S.

WHAT WE’RE READING

Major Boston Hospital Finds Dramatic Drop in Stroke, Heart Attack, and Cancer Patients During Coronavirus Pandemic

The Boston Globe

Medical visits for serious conditions such as cancer, heart attacks, and strokes have dropped by as much as 65 percent during the pandemic for Beth Israel Deaconess Medical Center. The number of patients referred to the hospital’s breast cancer and hematologic cancer clinics in April fell 65 percent and 61 percent, respectively, compared with before the pandemic. The group also discovered declines of 33 percent in heart attack patients and 58 percent in stroke patients hospitalized in March and April.

NCI Director, Dr. Sharpless tweeted a response to the article saying: “Cancer diagnoses are sharply down during the pandemic, but cancer incidence is not. This suggests we’ll see delayed diagnosis and upstaging, which could mean worse outcome. Let’s all agree to not let that happen.”

Read More »

For Cancer Patients, Anguish Grows Over Deferred Surgery as Risk Rises
National Public Radio (NPR)

Breast cancer survivor, Silver, was told her mastectomy would require another procedure to cover her wound by her oncologist. The additional surgery was considered cosmetic, according to recent standards, and therefore put her surgery on hold.

Yet, Silver felt this “nonessential” surgery was important.

“It’s not necessarily considered a medical emergency by them, even though it’s, like, the entire world to me,” Silver says.

Read More »

Special Report Provides Guidance to Oncology Practices on Resuming Cancer Care During COVID-19 Pandemic

The American Society of Clinical Oncology (ASCO)

Earlier this week ASCO released the ASCO Special Report: A Guide to Cancer Care Delivery During the COVID-19 Pandemic, which provides detailed guidance to oncology practices on the immediate and short-term steps that could be taken to help protect the safety of patients and healthcare staff before resuming more routine care operations during the COVID-19 public health crisis.

Read More »

More COVID-19 Information

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2020 NCCS Elevate Ambassadors Selected to Improve Survivorship Care in Local Communities

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Elevating SurvivorshipThe National Coalition for Cancer Survivorship (NCCS) is proud to announce 14 patient leaders selected to serve as Ambassadors for the 2020 Elevating Survivorship program.

Elevate Ambassadors will receive support, mentorship, networking opportunities, and virtual training from NCCS to develop and execute a plan of action to improve survivorship care in their community — whether for a hospital, oncology practice, community-based organization, or virtual community.

This year’s Elevate Ambassadors are:

Joli Bartell  |  Woodinville, WA
Woodrow Brokenburr  |  Agoura Hills, CA
Jennifer Campisano, JD  |  Phoenix, AZ
Crystal Champion, MD, PT, DPT, CLT-ALM, DN  |  Duluth, GA
Lesley Glenn  |  Central Point, OR
Kimberly Harrison  |  Bowie, MD
Nancy Howe  |  Phoenix, AZ
Wenora Johnson  |  Joliet, IL
Joslyn McArdle  |  Wynantskill, NY
Debbie Setuain  |  Sunny Isles Beach, FL
Raquel Smith  |  Hoover, AZ
Susan Strong  |  Firestone, CO
Amy LeAlice Oliver Steinkuhl, MA  |  Wilmore, KY
Christi Turnage, MSN, RN  |  Madison, MS

Elevate Ambassadors met virtually on May 20-21, 2020 to network and collaborate on local program strategies and development.

“I found the Elevating Survivorship program to be extremely supportive, inclusive, and enlightening. Meeting so many smart, talented, driven advocates was very inspiring,” said a 2019 Elevate Ambassador.

“With nearly 17 million cancer survivors in the U.S., there is a pressing need for local mentorship, expertise, and support from experienced patient advocates who can provide relatable insight for cancer survivors in their community. We anticipate the 2020 Elevate Ambassadors achieving this,” said NCCS Vice President of External Affairs, Elena Jeannotte.

Learn more about Elevating Survivorship »

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Grant funding for Elevating Survivorship provided by: Bristol-Myers Squibb, Janssen Oncology, Pharmacyclics, Eisai and Takeda Oncology.

NCCS News Cancer Policy Matters

NCCS Project Aims to Gain Cancer Survivors’ Insights on Telehealth

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NCCS LogoThis month, the National Coalition for Cancer Survivorship (NCCS) launched a project to identify and share cancer patients’ and survivors’ perspectives on telehealth in cancer care.

Regulatory, societal and practice changes associated with the COVID-19 pandemic have led to an increased use of telehealth, including in various aspects of cancer care. In this rapidly changing environment, there has been little opportunity to gain insight and direction from people with cancer regarding the feasibility and acceptability of telehealth for cancer care.

NCCS will engage patients and survivors to articulate patient needs and perspectives for effective use of telehealth in cancer care, to improve clinical practice, educate cancer survivors and their families, and inform public policy. Goals of the project include the following:

  • Obtain direction from cancer patients and survivors about how to maximize the benefits of telehealth. At the same time, obtain feedback from cancer providers.
  • Create resources for oncology practices on how to address patient barriers and increase the effectiveness of telehealth visits, and for patients and families about what to expect from telehealth visits and how to prepare for those visits.
  • Develop and disseminate a white paper with policy recommendations from a patient perspective and engage in policy advocacy.

Initial findings from the project will be available by the end of June.

NCCS is a nonprofit patient advocacy organization with a mission to advocate for quality cancer care for everyone touched by cancer.

NCCS thanks Pfizer, Inc. for their support of this important initiative.

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Remembering Fitzhugh Mullan

Remembering Fitzhugh Mullan, MD

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By Barbara Hoffman, Susie Leigh, and Julia Rowland

It is with profound sadness that we acknowledge the passing of Fitzhugh Mullan, MD, the co-founder and first president of the National Coalition for Cancer Survivorship, on November 29, 2019.

As a young physician in 1975, Fitz was diagnosed with cancer at a time a cancer diagnosis was commonly a death sentence, often kept secret from friends, family, and coworkers.

Always an activist for the rights of the disadvantaged, ten years after his own cancer experience, Fitz wrote “Seasons of Survival, Reflections of a Physician with Cancer,” a transformative piece published in the New England Journal of Medicine that served as a catalyst for the modern cancer survivorship movement. He generously shared his cancer experience as a badge of honor and fought for a better quality of life for all survivors.

Albuquerque, NM, October 1986: Fitzhugh Mullan, MD (Front row, right) with the other founding members of NCCS.

In October 1986, Fitz and Catherine Logan, Executive Director of Living through Cancer — a support center for patients and families dealing with cancer — led a weekend retreat in Albuquerque, New Mexico, of survivors and caregivers to build a movement of and for cancer survivors. He deftly shepherded a room full of strangers in one short weekend into a collaborative group dedicated to changing the landscape for cancer survivors. With audacity and vision, Fitz led the discussion that redefined the lexicon of cancer including, importantly, what it meant to be a cancer “survivor,” and founded the National Coalition for Cancer Survivorship (NCCS).

With dignity, kindness, brilliance, and selfless energy, Fitz built the foundation upon which NCCS rests today. His work has enhanced the lives of countless cancer survivors through advocacy for their medical, emotional, financial, and social needs, from the moment of diagnosis and for the balance of their lives. We mourn the passing of our dear friend, mentor, and beloved colleague.

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Barbara Hoffman, JD, and Susie Leigh, BS, RN, are co-founders of NCCS and were present for the first meeting in Albuquerque, NM 33 years ago.

Julia Rowland, PhD, is currently an NCCS board member and was director of the National Cancer Institute’s Office of Cancer Survivorship for nearly 20 years.

Donate to the Fitzhugh Mullan, MD Memorial Fund »
The fund will support NCCS’ public policy activities on behalf of cancer survivors.

If you wish to share a remembrance of Fitz, please do so in the comment section below.

[embedyt] https://www.youtube.com/watch?v=KP6aclm0Z98&width=1089&height=613&iv_load_policy=3[/embedyt] VIDEO: In 2016, Dr. Mullan spoke about the past, present, and future of the survivorship movement at the NCCS 30th Anniversary Reception.

Fitz Mullan and Ellen Stovall

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Health Care Roundup: Kasich on Medicaid Expansion Success; New Cervical Cancer Screening Choices; a Nurse’s ‘Gut Feeling’; and More

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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

Court Throws Out KY Governor’s Medicaid Countersuit

Kentucky Governor Matt Bevin (R) lost a lawsuit against Medicaid recipients who are challenging the Governor’s attempt to implement Medicaid work requirements. Earlier this year, Bevin was also unsuccessful in moving forward with his plans in changing components of Medicaid expansion in the state when a federal court sided with the same Medicaid recipients.

The ruling in this most recent dismissal against Bevin pointed out that the countersuit “did not address the substance of the case.” It should be noted again that if Bevin is eventually successful in implementing his plan to alter Medicaid expansion in Kentucky, 95,000 Kentuckians would no longer be covered under his proposal.

Gov. Kasich Continues to Spotlight Successes of Ohio's Medicaid Expansion Successes

Offering a different perspective is Ohio Governor John Kasich (R), who continues to support Medicaid expansion under the Affordable Care Act (ACA). In a state government report released earlier this week, Kasich pointed out the benefits of the ACA, including the fact that the uninsured rate was cut in half. The report also stated that Medicaid expansion reduced the number of times enrollees used ER services, while increasing utilization under primary care.

Enrollees were also able to access treatment for hard-to-treat conditions, making it easier for those beneficiaries to seek out work while on Medicaid. The program also improved the outcomes in opioid addiction and poor mental health, reporting that 96 percent of those struggling with opioid addiction received treatment. With the future of the ACA uncertain under the Trump administration, Governor Kasich hopes to continue to shed light on the fact that Medicaid has improved health care for thousands of Ohioans.

Plans on Drug Pricing Still Remain Unclear

The Trump’s administration handling of drug pricing costs continues to leave some key players frustrated with few signs of the next steps to making drugs affordable for Americans. Several drug companies remain cautious in accepting the policy changes the administration may propose soon, while other companies continue to operate business as usual. For U.S. Health Secretary Alex Azar, the focus on drug pricing is still on getting rid of drug rebate programs. Pharmaceutical benefit manager (PBM) groups are fighting against Azar’s plans, pointing out that HHS would need Congressional approval before eliminating the drug rebate program. PBMs were established to negotiate reduced costs of medicines, though their effectiveness has been questioned.

The Trump administration feels increased pressure to establish more definitive stances on drug pricing as mid-term elections approach.

Now, More Choices for Cervical Cancer Screening

The US Preventive Services Task Force (USPSTF) announced that women between the ages of 30 to 65 have more options when it comes to checking for cervical cancer. Women may now receive an HPV test, a Pap test, or both.

Cervical cancer screening and Pap smears have been key in greatly reducing deaths from cervical cancer from 2.8 to 2.3 deaths per 100,000 women between 2000 and 2015. Previously, the task force had only recommended women get either the Pap smear or the HPV test.

The task force also recommends women test regularly:

  • For women ages 21 to 29 — Pap smear screening once every three years;
  • For women ages 30 to 65 —
    • Pap smear screening once every three years, or;
    • HPV test once every five years, or;
    • Both tests taken once every five years.

The task force says women over the age of 65 no longer need cervical screening, if they were adequately screened prior to turning 65.

CHART OF THE WEEK

What Does Knee Surgery Cost? Few Know, and That’s a Problem

Wall Street Journal

IMPORTANT READS

Racial Disparities, Prescription Medications, and Promoting Equity

Via Public Health Post

In a viewpoint article at the Public Health Post, two authors lay out racial disparities in access to drug treatment is not just a matter of socioeconomic level. Race and ethnicity is a strong predictor of how frequent medication is used (or underused), the likelihood of being insured, and discrimination in prescribing practice.  Solutions that are provided include encouraging Medicaid expansion and ACA, reduce discrimination in prescribing, and to continue to shift to value-based formularies to lower costs. Read More »

Shared decision-making isn’t all that shared—“Should You Get That Scan? Your Doctor Might Not Be Great At Helping You Decide”

Via National Public Radio (NPR)

A study published in JAMA Internal Medicine looked at how well doctors talked about the risks and benefits of lung cancer screening. The results showed that when it comes to explaining the ways that certain screenings can cause you harm, doctors could use some help. The study evaluated conversations between doctors and patients as part of JAMA’s “Less is More” research on the costs of too much treatment and testing. "It's about a deeper issue: … Is healthcare structured to give patients the information they need to make informed decisions?" says Dr. Daniel Reuland, a professor of medicine at the University of North Carolina–Chapel Hill. Read More »

How to Quantify a Nurse’s ‘Gut Feelings’ (Opinion)

Via New York Times

Nurses often have “gut feelings,” but actually these feelings are more of agglomerations of observations and experiences that they have honed over time and what the author says has turned into “finely tuned clinical judgement.”

Read More »

Related Posts

Health Care Roundup: ‘Junk Insurance;’ High Costs and Forgone Care; Reinsurance; Patient Safety After Hospital Mergers

Health Care Roundup: “Toxic Town” in WV Battles High Cancer Rates; CMS News: Risk Adjustment, 340b, Site-Neutral Payments; Hospital Costs; More

NCCS News Cancer Policy Matters

NCCS Awarded American Institutes for Research Grant to Develop New Outcome Measure: “Return to Functional Status”

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UPDATE FEBRUARY 2020: Read a summary of this research project at www.canceradvocacy.org/RFS.

The National Coalition for Cancer Survivorship (NCCS) was awarded a grant from the American Institutes for Research (AIR), with support from the Robert Wood Johnson Foundation, to develop a new quality measure concept for “return to functional status.” NCCS will use a novel project design that convenes patient advocates to develop a conceptual definition of functional status, during and after cancer treatment. NCCS was the only patient advocacy organization selected in a highly competitive selection process.

“A ‘return to functional status’ quality measure is a novel concept that will measure what truly matters to cancer patients—getting their life back after treatment,” said NCCS CEO Shelley Fuld Nasso. “NCCS is uniquely positioned to move this important work forward. We are flipping the traditional model of quality measure development on its head by engaging patients to define the measure, with input from a group of technical experts, to produce a meaningful outcome measure. Too many quality measures assess processes, like whether a test was offered or pain was assessed, but not enough measure the outcome for people with cancer. We are thrilled to work with AIR and our partners in this effort to make the treatment and survivorship experiences for millions of cancer patients more patient-centered.”

Kristen McNiff, MPH, will serve as project lead. She brings over 20 years of experience in cancer quality, measure development and validation, and related policy. She has provided technical expertise at the American Society of Clinical Oncology (ASCO), and recently served as Vice President of Quality & Patient Safety at Dana-Farber Cancer Institute in Boston, MA.

Together with NCCS CEO Shelley Fuld Nasso, they will lead a team to develop, refine, and employ an innovative patient-led measure development approach. This approach will apply the best experts to each task: patients will define the outcomes of importance, and methodologists will provide recommendations regarding technical specification. The project will result in a patient-centric specification template that includes the information of most relevance to patient audiences. The AIR award will allow NCCS to develop patient-centered specifications for ‘return to functional status’ that are sufficiently detailed to allow for testing and validation in a subsequent initiative.

NCCS has assembled a stellar committee of experienced patient advocates, survivors who represent diverse cancer experiences and types of cancer, to define a measure concept that is meaningful to survivors. Committee member Rebecca Esparza said, “As a two-time cancer survivor, I appreciate that NCCS is taking a different approach to quality measurement that is driven by patient advocates and engages cancer survivors to define the concept of return to functional status and co-create the measurement priorities and patient-centered specifications. Today, although I am still cancer-free, I still suffer daily with side effects from my cancer treatments, including joint pain, chronic fatigue syndrome, fibromyalgia and neuropathy. I have become a champion for improving the quality of life for cancer survivors and not just being satisfied with simply surviving cancer, but thriving and living life to its fullest.”

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Health Care Roundup: Virginia to Expand Medicaid, Colorectal Screening Guidelines, How the ‘Bewildering’ Health Insurance Industry Works, and More

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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

Virginia Votes to Expand Medicaid

Both chambers of the Virginia Legislature moved a budget bill Wednesday that would expand Medicaid through the Affordable Care Act (ACA). The bill would make Virginia the 33rd state to expand Medicaid under Obamacare and could lead to as many as 400,000 people being newly covered. "As a doctor, I'm so proud of the significant step we've taken together to help Virginians get quality, affordable care," said Gov. Ralph Northam.

New Jersey Signs Law Protecting ACA

New Jersey Gov. Phil Murphy signed a law that requires all state residents to have health insurance or pay a penalty. Democratic legislators in the state had drafted the legislation after the ACA’s individual mandate penalty was removed as part of Congress' tax reform package. Experts predict ending the mandate would destabilize the health insurance market because it would be dominated by sick or older policy holders whose costs would drive up premiums.

President Says Drug Makers Will Voluntarily Lower Drug Prices

President Trump earlier this week said that some pharmaceutical companies will announce in the coming weeks that they will voluntarily lower drug prices. Pres. Trump’s remarks came during a signing ceremony for the national Right to Try law: “Some of the big drug companies in two weeks…they are going to announce—because of what we did—they are going to announce voluntary massive drops in prices,” he said. HHS Secretary Alex Azar has encouraged drug companies to self-regulate their prices and has threatened to take action if companies aren't responsive.

Colorectal Cancer Screening: New Recommendations From ACS

The American Cancer Society this week announced a recommendation for colorectal cancer screening to begin at age 45 for those of average risk.  The ACS press release states:

An updated American Cancer Society guideline says colorectal cancer screening should begin at age 45 for people at average risk, based in part on data showing rates of colorectal cancer are increasing in young and middle-aged populations.

The new recommended starting age is based on colorectal cancer (CRC) incidence rates, results from microsimulation modeling that demonstrate a favorable benefit-to-burden balance of screening beginning at age 45, and the expectation that screening will perform similarly in adults ages 45 to 49 as it does in adults for whom screening is currently recommended (50 and older).

See the American Cancer Society website for the full text of the new recommendation, a recommendation summary chart, and other information.

CHART OF THE WEEK


Poll: 52% of the public say bringing down Rx drug prices should be a top priority for Washington; 39% say they are confident President Trump will deliver

The March Kaiser Health Tracking Poll finds that more than a year into President Trump’s presidency, half of the public (52 percent) say passing legislation to bring down the price of prescription drugs should be a “top priority” for President Trump and Congress. Yet, less than half of the public (39 percent) say they are confident that President Trump and his administration will be able to deliver on the promise that Americans will pay less for prescription drugs than they pay now.

IMPORTANT READS

Trump's new insurance rules are panned by nearly every healthcare group that submitted formal comments

Via LA Times

This article points out that more than 300 patient, consumer, and health care provider groups commented on the Trump administration’s proposed rule to expand the use of short-term health plans, and 95% of the comments criticized or opposed the proposal. Sandy Praeger, a former Republican state insurance regulator from Kansas, is quoted as saying, “Basically anybody who knows anything about healthcare is opposed to these proposals. It’s amazing.” NCCS submitted comments to the Centers for Medicare and Medicaid Services (CMS) in opposition to the proposed rule and hosted a webinar encouraging advocates to submit their own comments.
Read the LA Times article »

Why Your Health Insurer Doesn’t Care About Your Big Bills

Via ProPublica

In this eye-opening piece, ProPublica and NPR examine the “bewildering, sometimes enraging ways the health insurance industry works, by taking an inside look at the games, deals and incentives that often result in higher costs, delays in care or denials of treatment.” Read More »

Benefit Change Could Raise Costs For Patients Getting Drug Copay Assistance

Via Kaiser Health News

This piece describes new “copay accumulator” programs that limit the protections copay assistance programs provide to consumers with expensive cost-sharing. “Drug copay assistance programs have long been controversial. Proponents say that in an age of increasingly high deductibles and coinsurance charges, such help is the only way some patients can afford crucial medications. But opponents say the programs increase drug spending on expensive brand-name drugs by discouraging people from using more cost-effective alternatives.” Read More »

NCCS Policy Comments Capitol

NCCS Joins Cancer Leadership Council to Oppose Right to Try Legislation in the House

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US CapitolThe National Coalition for Cancer Survivorship joined with other organizations of the Cancer Leadership Council (CLC) in a letter to House leadership to oppose House consideration of the Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act (S. 204).The legislation passed the House on May 22 and goes to the President for his signature.

The barriers to access to unapproved therapies do not relate to FDA action on requests. Therefore, limiting FDA review will not ensure access to experimental therapies, as suggested by Right to Try proponents. Removing FDA from oversight of the patient requests could put patients at risk due to unsafe and ineffective experimental therapies.CLC Letter to House leaders on Right to Try bill

Read the full letter below.

CANCER LEADERSHIP COUNCIL

A PATIENT-CENTERED FORUM OF NATIONAL ADVOCACY ORGANIZATIONS
ADDRESSING PUBLIC POLICY ISSUES IN CANCER

May 21, 2018

The Honorable Paul Ryan
Speaker
United States House of Representatives
H-232, The Capitol
Washington, DC 20515

The Honorable Nancy Pelosi
Minority Leader
United States House of Representatives
H-204, The Capitol
Washington, DC 20515

Dear Speaker Ryan and Leader Pelosi:

The undersigned cancer organizations, representing patients, physicians, other health professionals, and researchers, write to express opposition to House consideration of the Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act (S. 204).

Our organizations have in recent months expressed serious reservations about Right to Try legislation, because we were concerned that the measures could expose patients to harm unnecessarily. The current Food and Drug Administration expanded access program results in approval of virtually all requests for access to unapproved therapies, so removing the agency from the review of such requests is not necessary. The barriers to access to unapproved therapies do not relate to FDA action on requests. Therefore, limiting FDA review will not ensure access to experimental therapies, as suggested by Right to Try proponents. Removing FDA from oversight of the patient requests could put patients at risk due to unsafe and ineffective experimental therapies.

Despite our fundamental misgivings about the Right to Try legislative effect, we have acknowledged that the House or Representatives-passed version of the bill (H.R. 5247) incorporated some patient safeguards, including more robust informed consent requirements, FDA oversight of the process, and a more precise definition of eligibility for the pathway to unapproved therapies.

The plan of the House of Representatives to consider the Senate-passed bill and essentially abandon its work in strengthening the Right to Try legislation is not in the best interests of the cancer patients and health care professionals we represent. This step moves in exactly the wrong direction.

We urge the House to withhold action on S. 204, the Senate-passed Right to Try bill, and instead stand by the current expanded access program that balances the demands of patients for access to unapproved therapies and the responsibility of FDA to protect patient safety.

Sincerely,

Cancer Leadership Council

American Society of Clinical Oncology
The Children’s Cause for Cancer Advocacy
Fight Colorectal Cancer
Hematology/Oncology Pharmacy Association
International Myeloma Foundation
Kidney Cancer Association
The Leukemia & Lymphoma Society
Lymphoma Research Foundation
National Coalition for Cancer Survivorship
Prevent Cancer Foundation
Susan G. Komen

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Download the letter » [PDF]

Related Posts

NCCS Joins Cancer Leadership Council to Oppose the Latest Version of Right to Try Act

NCCS Joins Letter Expressing “Serious Reservations” About “Right to Try” Legislation

Read more NCCS Policy Comments »

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

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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.”

“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,” said Congressman Mark DeSaulnier.

“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.

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

Betsy Glosik blog fb

Seeing the Bigger Picture of Survival Through Patient Advocacy

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Betsy Glosik HeadshotBy Betsy Glosik
Patient Advocate and Cancer Survivor
Co-Founder of Destination Hope

As patient advocates (as in most other things in life), it seems the more we learn, the more we see what we don’t know. Whether we’re involved in promoting a patient-centered approach to research, direct care, survivorship, policy change or education, there’s a daily twist and update for us to wrap our brains around. And no matter which arena we find ourselves in, we are always looking for the endpoint: How far have we come in cancer care, and how does this translate to measuring survivorship?

This past October, I was honored to participate as a patient voice in what is called a “Measure Incubator” held by the National Quality Forum in Washington D.C. The goal of these sessions is to develop ideas about best ways to assess care objectives and outcomes that are reliable and valid, and that fulfill the quality mandates for better and more affordable care—not only for cancer, but for other diseases as well.

A new concept for me, the goal of this particular panel was to develop a more accurate way to understand survival rates of melanoma patients (of which I am one), and to look at the most feasible, accurate, and encompassing way to gather data on overall survival rates for patients with this disease in the United States. Once the concept for measurement is developed, then it goes to the next steps to see if it can actually be implemented. Other panelists included dermatologists, surgeons, medical oncologists, research analysts, fellow NCCS Cancer Policy & Advocacy Team (CPAT) member Caitlin Riley, and Shelley Fuld Nasso, CEO of NCCS.

Surprisingly to me, there is no national standard of measure that accurately depicts survival rates over time with reference to staging. Panelists weighed in on quality of life and availability of information available for patients, current guidelines for treatment, updated definitions of staging (which were just published in the week prior to our meeting), and what information is realistically appropriate and available to pull from data banks (hospitals, EHR’s, statistics from Social Security, etc.). Existing databases do not hold all the answers. Some patients age out of the system after a period of time when released from treatment and are no longer followed. Some patients are not treated in a typical oncology setting so their statistics are not readily available. And there’s also the question of the providers’ lack of information on patient mortality, and if it even relates to their diagnosis.

Indeed, a complex set of information creates more questions. Clearly, we can never have the perfect picture. As with any photograph, there is a landscape outside the frame we cannot view. We can only imagine based on what we see. But the goal is to get the best optics we can to really understand what we are looking at so better decision-making to improve outcomes becomes reality. I certainly got an education on how challenging it is to see the whole picture in cancer care, and how intricately the pieces must fit together to achieve better outcomes.

About the Author

Betsy Glosik is a patient advocate, co-founder of Destination Hope in Cleveland, Ohio, a survivor of breast cancer and melanoma, and a member of the NCCS Cancer Policy & Advocacy Team (CPAT).

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