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2019 Stovall Award Honorees Brereton and Dornsife and presenters

NCCS Presents 4th Annual Ellen L. Stovall Award to Dr. Harmar Brereton and Dana Dornsife for Their Innovation and Dedication to Cancer Survivors

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Stovall Award Honorees Harmar Brereton and Dana Dornsife with presenters

From left to right: Rep. Matt Cartwright, Dr. Harmar Brereton, NCCS CEO Shelley Fuld Nasso, Dana Dornsife, Rep. Mark DeSaulnier, Sen. Bob Casey. (Photo: Leslie E. Kossoff/LK Photos)

Washington, D.C. – The National Coalition for Cancer Survivorship (NCCS) presented the 4th annual Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care to Dr. Harmar Brereton and Dana Dornsife on November 13.

Named for former NCCS CEO Ellen Stovall, who died in 2016 due to complications from three cancer treatments, the award highlights those who continue Ellen’s work of transforming cancer care to further incorporate patients’ goals, needs, and values. Sen. Robert Casey (PA) and Congressman Matt Cartwright (PA-8) joined NCCS to present the award to their constituent, Dr. Brereton, and Congressman Mark DeSaulnier (CA-11), a cancer survivor, presented the award to his constituent, Mrs. Dornsife.

“The Stovall Awards reception is a highlight of our year, as we honor Ellen’s legacy of advocating for everyone touched by cancer to have access to the best cancer care possible, during and after their cancer treatment. This year’s honorees exemplify her life’s work and passion: Dr. Harmar Brereton was her physician and friend, and is a compassionate, patient-centered oncologist and teacher, and Dana Dornsife has dedicated herself to ensuring that cancer patients have access to clinical trials for their treatment and to advance the science,” said Shelley Fuld Nasso, NCCS CEO.

Sen. Bob Casey and Rep. Matt Cartwright present the 2019 Stovall Award to their constituent Harmar Brereton, MD.

Sen. Bob Casey (Left) and Rep. Matt Cartwright (Right) present the 2019 Stovall Award to their constituent Harmar Brereton, MD. (Photo: Leslie E. Kossoff/LK Photos)

Dr. Brereton spent thirty-three years in private practice and founded the Northeast Regional Cancer Institute in his community of Scranton, Pennsylvania. He teaches at the Weill Cornell School of Medicine and is on the faculty of the Geisinger Commonwealth School of Medicine, formerly the Commonwealth Medical College, a school he helped found. He is also a leadership team member of the International Cancer Expert Corps. Dr. Brereton is a graduate of Yale University and earned a medical degree from the University of Pittsburgh. He trained in Internal Medicine at Emory University, Medical Oncology and Hematology at the NCI, and Radiation Oncology at Johns Hopkins University.

Sen. Bob Casey said of Dr. Brereton, “Two words that come to mind, not describing a doctor, but describing a human being: uncommon decency.”

“Dr. Brereton has not only transformed cancer care in our region, but he continues to change the culture of cancer care everywhere as he teaches and guides the next generation of providers about true patient-centered care,” said Rep. Matt Cartwright.

Dr. Brereton reflected on his drive to serve patients: “These long-term relationships we have with patients require humility. However, it is also these long-term relationships that for me have been so important in shaping and reaffirming my conviction of trying to meet my patient’s needs.” He continued, “We honor our cancer patients by remembering them, and by telling their stories.”

Rep. Mark DeSaulnier presents the 2019 Stovall Award to his constituent Dana Dornsife.

Rep. Mark DeSaulnier presents the 2019 Stovall Award to his constituent Dana Dornsife. (Photo: Leslie E. Kossoff/LK Photos)

Dana Dornsife is Chair of the Board and Founder of Lazarex Cancer Foundation, a nationwide non-profit organization she created in 2006. The unique mission of Lazarex is to improve the outcome of cancer care—giving hope, dignity, and life to advanced stage cancer patients and the medically underserved by providing assistance with costs for FDA clinical trial participation, identification of clinical trial options, community outreach and engagement. Mrs. Dornsife expanded the mission at Lazarex to bring transformational change to the bench to bedside process of clinical trial enrollment, retention, minority participation and equitable access with IMPACT (IMproving Patient Access to Cancer Clinical Trials). She is a graduate of Drexel University in Philadelphia and serves as a board member of the USC Brain and Creativity Institute at University of Southern California, the UCSF Cancer Leadership Council, and the MGH Presidents Council.

Rep. Mark DeSaulnier commented, “Dana’s an example of somebody who was about to lose a family member whom she loved, at an age where you wouldn’t expect to. And she did what we would all think that we would do. She dropped everything to make sure that her sister had every ounce of her energy, affection, and love. And then she transferred that, not just to her sister, but all of us.”

In her remarks, Mrs. Dornsife said, “I am honored and I am humbled to be a recipient of the Ellen Stovall award, an award that really is a testament to [Ellen’s] pioneering and transformational work on behalf of all cancer patients. And although I’m standing here and I’m the named recipient of this award, I would not be here if it wasn’t for all of the treasured people in my life who’ve been critical in advancing the Lazarex Cancer Foundation mission.”

Read more about Dana Dornsife, Dr. Brereton, and the Ellen L. Stovall Award »

Make a gift to the Stovall Award program »

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Health Care Roundup: Health Care Spending; Survivorship Care Delivery; Metastatic BC at NY Fashion Week; Susan Gubar on Financial Toxicity; 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 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

Medicare Spending, Surprise Billing, Drug Pricing

This week, the Centers for Medicare and Medicaid Services (CMS) published new health care spending projections for the United States. Unsurprisingly, Medicare spending growth is projected to outpace that of other payers in the coming decade due to enrollment growth and higher use of services. See a breakdown of the projections here.

On Wednesday, six hospital groups laid out an eight-point plan for dealing with surprise medical billing, a concept that has gained popularity among both parties in Congress. The plan was sent to Congressional leaders and included popular proposals like ensuring patients aren’t stuck with exorbitant bills. The groups also stated they want patients to have adequate provider networks.

Next week, the Senate Financial Services Committee will hold another hearing on the topic of drug prices, this time with seven CEOs of major pharmaceutical companies. To watch the hearing on Wednesday, visit the live stream.

CHART OF THE WEEK

CMS Estimates Annual U.S. Health Care Spending to Hit $5.96 Trillion by 2027

Morning Consult

As mentioned above, CMS projects the United States will spend $5.96 trillion on health care costs in 2027. These fiscal pressures could impact cancer care delivery, especially in Medicare, considering more baby boomers will move into Medicare and a majority of cancer diagnoses are in adults 65 and older.

Morning Consult Poll

Chart: Morning Consult

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IMPORTANT READS

Personalized Risk-Stratified Cancer Follow-Up Care: Its Potential for Healthier Survivors, Happier Clinicians, and Lower Costs

Journal of the National Cancer Institute

This commentary piece was written by Deborah K. Mayer, PhD, RN, AOCN, FAAN, interim director of the National Cancer Institute’s Office of Cancer Survivorship, and Catherine M. Alfano, PhD, vice president of survivorship at the American Cancer Society. In the piece, they discuss the changing approaches to delivering survivorship care, considering there will be more cancer survivors with fewer oncologists to treat them.

Read More »

The Financial Toxicity of Illness

New York Times Well Blog

In Susan Gubar’s latest thoughtful piece, she sets her focus on the devastating effects of financial toxicity for patients, saying, “cancer treatment escalates the possibility of penury, and treatment-produced fiscal catastrophes are tied to cancer deaths.” She examines the dilemma we as individuals and as a society face of where to draw the line between treatment costs and benefit.

Read More »

Why Do Only Eight Percent Of Cancer Patients In The U.S. Participate In Clinical Trials?

Forbes

It’s well known that very few patients participate in clinical trials in America, for a variety of reasons. A new study looks further into what some of those reasons are, with some interesting results.

“Most of the time it’s not up to the patient. Instead, structural and clinical barriers are the reasons more than 3 out of 4 patients do not participate in trials,” said Dr. Joseph Unger, who led the research.

Read More »

'Not Letting It Define Us' — Walking The Runway With Metastatic Breast Cancer

National Public Radio (NPR)

Last week, the third annual #Cancerland fashion show took place at New York Fashion Week. Two dozen models, all living with metastatic breast cancer, walked the runway. The event benefitted METAvivor, a metastatic breast cancer organization, and all the proceeds will be put toward research.

Rebekah Howerton described why she participated:

“We are changing the narrative from what is now currently in many ways a terminal disease to a chronic disease that women are living with. We are living our lives. We are working. We are moms. We are very normal in many ways.”

Read More »

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

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Dan Engel

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.

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

Drug Pricing, Drug Pricing, and More Drug Pricing!

This week, the House and Senate held several hearings related to health care, including a House Ways and Means Committee hearing titled “Protecting Americans with Pre-Existing Conditions.” The hearing illustrated the stark difference between the two parties’ health care goals.

There were also dueling drug pricing hearings this week, one from the House Committee on Oversight and Reform titled, “Examining the Actions of Drug Companies Raising Prescription Drug Prices.” The Senate Finance Committee also held a hearing titled, “Drug Pricing in America: A Prescription for Change, Part I.”

Robert Pear of the New York Times provided an overview of the hearings:

Members of Congress from both parties served notice on pharmaceutical companies on Tuesday that the days of unchecked drug-price increases were over and that they would be held politically accountable for exorbitant prices. The new reality became apparent at simultaneous but separate hearings of House and Senate committees where lawmakers said that the relentless increases were unsustainable and unacceptable.

On Thursday, Health and Human Services (HHS) Secretary Alex Azar announced a policy proposal that would eliminate rebates from drug manufacturers to insurers and pharmacy benefit managers in the Medicare program, which the department claims would lower the out-of-pocket spending on prescription drugs at the pharmacy. Azar then called on Congress to pass the proposal into law banning rebates and extending it to the commercial market. Under draft rules, drug manufacturers would be allowed to offer rebates directly to consumers but would no longer be able to give rebates to pharmacy benefit managers. Stay tuned as NCCS analyzes this proposal and its potential impacts on cancer survivors.

NCCS recently commented on another drug pricing proposal by HHS. This proposed rule would change Medicare Part D’s protected classes drug coverage. In response, NCCS joined with other patient and provider groups of the Cancer Leadership Council (CLC) to comment on how these proposed changes could impact patients. The proposed rule would give Medicare plans the option to limit coverage of drugs in six categories, including cancer drugs. In the comment letter, the groups urge HHS to reconsider these changes as they would create barriers to treatments that cancer patients need. One major reservation articulated in the letter concerned the impact of the broader use of prior authorization and step therapy for drugs in protected classes. Access to only one drug in a specific drug class would undermine the ability to receive appropriate and recommended treatment.

NCCS and Cancer Leadership Council Highlight Potential Harm to Patients of Proposed Medicare Part D Changes

CHART OF THE WEEK

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

Kaiser Family Foundation

A recent analysis from Kaiser Family Foundation found that despite Medicare’s protections, Part D enrollees with serious health problems can face thousands of dollars in annual out-of-pocket spending.

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

Clinical Trial Exclusions: Are Researchers Missing Out?

Cure Magazine

Expanding access and increasing recruitment for clinical trials is an ongoing issue for NCCS. This article discusses the many challenges of recruiting patients to participate in clinical trials investigating immunotherapy drugs.

Mohammad Jahanzeb, M.D., a professor of hematology/oncology at the University of Miami Sylvester Comprehensive Cancer Center, says:

At the end of the day, only about 4 percent of the adult population of patients is treated on clinical trials in the United States, as opposed to nearly 90-plus percent of children with cancer.

Read More »

Trump boosts fight against surprise medical bills

The Hill

Momentum is building for action to prevent patients from receiving massive unexpected medical bills, aided by President Trump, who is vowing to take on the issue. Calls for action against so-called "surprise" medical bills have been growing, spurred by viral stories like one involving a teacher in Texas last year who received a $108,000 bill from the hospital after his heart attack.

Read More »

The modern tragedy of fake cancer cures

STAT News

A Jerusalem Post article making the rounds on social media claims that an Israeli biotech company will have “a complete cure for cancer” within a year. Matthew Herper explains why the claim is not true, writing:

The claim, absurd on its face, was particularly frustrating to those who work in medicine and drug development because it seemed so obvious there was not enough evidence to make it.

Read More »

Ads for Short-Term Plans Lacking ACA Protections Swamped Consumers’ Online Searches

Kaiser Health News

A new study shows that consumers looking for health insurance online last fall — using search terms such as “Obamacare plans,” “ACA enroll” and “cheap health insurance” — were most often directed to websites that sell short-term limited duration health plans that don’t comply with the ACA’s consumer protections.

Read More »

Consolidation of health insurance and drug benefits is back

Axios

Through rapid consolidation, five companies – Anthem, Cigna, CVS Health, Humana and UnitedHealth – will control insurance and pharmacy benefits for more than 125 million Americans.

Read More »

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NCCS and Cancer Leadership Council Highlight Potential Harm to Patients of Proposed Medicare Part D Changes

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Health Care Roundup: ‘Misleading’ Pre-Existing Conditions Bill; Clinical Trials Lack Black Patients; ‘Cancer Coaching’ Ethics; Young Adult Cancer Advocates

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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 HIGHLIGHT

NCCS and 30+ Patient Orgs Raise Concerns Over Senate Pre-Ex Bill

This week, NCCS and more than 30 other patient advocacy organizations submitted a letter to Senator Tillis (R-NC) detailing why his bill does not go far enough in protecting pre-existing conditions despite his intentions. The bill title, “Ensuring Coverage for Patients with Pre-Existing Conditions Act” (S.3388), is misleading and, if passed, would not provide adequate coverage for those covered under current law with pre-existing conditions.

The reason is that while the bill requires insurers to provide health care plans to people regardless of health, it does not require the insurers to cover the costs of the care for the pre-existing condition itself.

NCCS and others stated in the letter:

We share your interest in continuing to make health insurance accessible to Americans with pre-existing conditions and appreciate your efforts to preserve certain protections in law, regardless of the outcome of Texas vs. US. However, the “Ensuring Coverage for Patients with Pre-Existing Conditions Act” as currently drafted, falls far short of providing coverage and security to your constituents.

The bill is seen by many as an attempt to calm fears related to the Texas lawsuit challenging the constitutionality of the ACA. If that lawsuit is eventually successful, it would wipe out the pre-existing condition protections millions of Americans have come to rely on.

Read the full letter »

CHART OF THE WEEK

The ACA’s Pre-Existing Condition Protections Remain Popular with the Public, including Republicans, As Legal Challenge Looms This Week

Kaiser Family Foundation

As there are several pending lawsuits that aim to either attack or protect the ACA, we thought it was important to share this chart again by KFF that shows how important pre-existing condition protections are for the vast majority of Americans.

IMPORTANT READS

Key Flaws of Short-Term Health Plans Pose Risks to Consumers

Via Center on Budget and Policy Priorities

On October 2, federal rules take effect that will fundamentally change how short-term health plans are administered. This article serves as another reminder of why these changes are so concerning, namely:

In most states, short-term plans are exempt from pre-existing condition protections and benefit standards that individual-market plans must meet.

Read More »

Denied ‘life-extending opportunities’: Black patients are being left out of clinical trials amid wave of new cancer therapies

Via STAT News

This report provides compelling evidence that clinical trials continue to have meaningful racial disparities. It specifically looks at a clinical trial for a new drug for multiple myeloma, where one out of five people diagnosed in the US are African-American. In the trial however, only 1.8 percent of participants were African-American.

The racial disparity in the Ninlaro study isn’t unusual. Reflecting the reluctance of the FDA to force drug makers to enroll more minority patients, and the failure of most manufacturers to do so voluntarily, stark underrepresentation of African-Americans is widespread in clinical trials for cancer drugs, even when the type of cancer disproportionately affects them. A ProPublica analysis of data recently made public by the FDA found that in trials for 24 of the 31 cancer drugs approved since 2015, fewer than 5 percent of the patients were black. African-Americans make up 13.4 percent of the U.S. population.

Read More »

Cancer Coaches Help Guide Patients During and After Treatment

Via Wall Street Journal

This article highlights the increasing use of “cancer coaches” to help guide patients through a cancer experience. While it is helpful that patients have somewhere to turn for additional assistance, it raises serious ethical concerns that only patients with financial means can afford this level of care.

Read More »

Young Adult Cancer Action Day: Advocating for Young Adult Survivors

Via The Bloodline With LLS (Podcast)

An informative interview with Kate Houghton, of Critical Mass, about the “Deferment for Active Cancer Treatment Act” (H.R. 2976). This bill “calls for federal student loan borrowers to be eligible for deferment while they are receiving treatment for cancer.”

Read More »

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Health Care Roundup: DOJ Won’t Defend ACA Provisions in Court, Health Care’s Role in 2018 Midterms, 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

Administration Action Threatens Coverage for People with Pre-existing Conditions

In a court filing yesterday, the Department of Justice (DOJ) stated that it would not defend key provisions of the Affordable Care Act in a lawsuit brought by Texas and several other states. One provision is the individual mandate, which was repealed in the tax bill passed by Congress and signed into law last December. Also at issue in the case is coverage and premiums for people with pre-existing conditions. In a blog post for The Commonwealth Fund, Timothy Jost explains the Trump administration’s action and the potential consequences for people with pre-existing conditions:

If the judge buys the administration’s argument, and if his ruling is upheld on appeal, 52 million Americans with preexisting conditions could face denial of coverage or higher premiums. The administration’s argument would also allow insurers to charge women, older people, and people in certain occupations higher premiums. This policy change would jeopardize coverage not just for consumers in the individual market, but also people with preexisting conditions who have employer-sponsored coverage. If these people lost or left their jobs, they may not be able to get individual market coverage.

NCCS will continue to monitor the situation and share ways that advocates can weigh in on this important issue for cancer survivors.

HHS Won’t Prohibit “Silver Loading” on ACA Plans

When President Trump stopped cost-sharing reduction payments to insurers, they began a practice known as “silver loading.” The insurers targeted their premium price increases into the silver-level plans of the Affordable Care Act. Since the silver plans are the benchmarks for determining subsidies, silver loading resulted in higher subsidies for people who chose those plans while leaving bronze and gold plans with minimal increases. This practice helped consumers but cost the federal government more in subsidy payments. HHS Secretary Alex Azar this week confirmed during a congressional committee hearing that the administration would not seek to stop insurers from doing this in 2019, but refused to confirm if future efforts to stop the practice would or would not be pursued.
More on Kaiser Health News »

Health Care Taking Center Stage Again?

Since last year’s bruising fight in Congress to repeal the Affordable Care Act and until last night’s DOJ decision, health care has largely stayed out of the spotlight.  As Vox's Dylan Scott puts it:

Repeal was a clean, simple, and big story. “Sabotage” — in the form of cutting CSRs, expanding non-Obamacare insurance, and slashing outreach — is more nebulous. People still care about health care, but they aren't hearing about it in the news every day anymore. The threat on health care can feel less real, even if sabotage is having very concrete effects.

However, trends are emerging that may bring health care back into the national spotlight, especially in light of recent developments regarding the legal challenge in Texas.  Axios points out “prescription drug costs are the issue du jour. Premiums for ACA coverage are also skyrocketing. Medicare’s financial footing is getting weaker.” More and more people are not just hearing about health care issues like last year, they’re starting to feel the impacts this year and could be a factor in the upcoming midterm elections. “This will be the first midterm in a decade that Obamacare will not be the issue that unites and energizes Republicans.”

IMPORTANT READS

Revised Michigan Medicaid Proposal Would Still Reduce Coverage and Access to Care

Via Center on Budget and Policy Priorities

While we’re seeing some encouraging trends with several states moving towards Medicaid expansion, there are also some very concerning examples. Michigan is near passage of bill that would add work requirements for Medicaid coverage. By one estimate, 54,000 Michiganders would lose their health care coverage. Further, the “new bill puts Michigan’s entire Medicaid expansion under the Affordable Care Act (ACA) — covering 670,000 people — at risk. That’s because Michigan would be required to end its expansion if the federal Centers for Medicare & Medicaid Services (CMS) doesn’t approve an additional waiver that raises premiums on some Medicaid beneficiaries.”
Read More »

Live Like Lola

Via Washington Post

The Washington Post, through words and photos, shares the powerful story of Lola Muñoz. A young girl facing diffuse intrinsic pontine gliomas (DIPG), an aggressive brain cancer. “For nearly a year and a half, photojournalist Moriah Ratner followed Lola and the Muñoz family on a journey marked by pain as well as laughter, fear as well as joy, anguish and finally peace. Her camera captured a girl dealing with inevitable loss while trying resolutely to live.”
Read More »

Op-Ed: “The ‘cruel joke’ of compassionate use and right to try: Pharma companies don’t have to comply”

Via STAT News

The father of a child with a rare-disease provides a blunt perspective on compassionate use and right to try. He points out that: “While the FDA has a compassionate use program to allow people access to experimental drugs, it can’t compel a company to provide those drugs. The newly signed ‘right-to-try’ law doesn’t either.”
Read More »

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NCCS Statement on the Passage of the STAR Childhood Cancer Act and the Right to Try Act

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Silver Spring, MD – The National Coalition for Cancer Survivorship issued the following statement regarding passage of both the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act (S. 292) and the Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act (S. 204). Both are now headed to the President’s desk to be signed into law.

“Passage of the Childhood Cancer STAR Act is a significant achievement in the effort to expand pediatric cancer research and treatments for children with cancer. We are especially encouraged by the survivorship elements included in the bill, including a provision to expand research on late effects on childhood cancer survivors to help improve their quality of life. We are grateful to Senators Jack Reed (D-RI), Shelley Moore Capito (R-WV), Chris Van Hollen (D-MD), and Johnny Isakson (R-GA) for championing the bill in the Senate, and to U.S. Representatives Michael McCaul (R-TX), Jackie Speier (D-CA), Mike Kelly (R-PA), and G.K. Butterfield (D-NC) in the House.

“While passage of the STAR Act was welcome news, we are concerned by passage of Right to Try legislation. NCCS respects the desire of individuals with terminal illness to seek access to experimental treatments. Clinical trials are the best option, and patients who are not eligible to participate in trials can request ‘compassionate access.’ There are barriers to compassionate access, but the Food and Drug Administration (FDA) approves virtually all requests for compassionate access to unapproved therapies. Removing the FDA from any oversight of unapproved therapies will not ensure access to experimental therapies and may cause unintended harm to patients by exposing them to unsafe and ineffective experimental therapies. NCCS joined with other patient advocacy organizations to oppose the Right to Try legislation, and we urge that additional patient safety protections be incorporated at the agency level.”

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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]

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

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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”

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”

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”

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”

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”

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”

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”

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?”

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 »

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What Caught Our Eye: “The True Cost of Cheap Health Insurance;” Living with Metastatic Disease; Cancer Control in Native Populations; More

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What Caught Our Eye (WCOE), April 27, 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

“The True Cost of Cheap Health Insurance”

https://twitter.com/TheAtlHealth/status/989804473555079174

Via The Atlantic — Any day now, the Trump administration is expected to release new regulations to make short-term health-insurance plans last a lot longer. In a fact sheet about the forthcoming changes, the administration said it wants to extend access to the plans—which now expire after three months, and offer too few services to qualify for the Affordable Care Act’s tax credits—in order to “provide additional, often much more affordable coverage options, while also ensuring consumers understand the coverage they purchase.” According to that release, the policies are beneficial for unemployed people and for those who can’t afford pricey Obamacare plans. But are they?
Read More »

“The health care world slams Trump’s proposal for short-term insurance plans”

Via The Washington Post — Your monthly premiums could be 20 percent lower if you buy the kind of short-term health plan the Trump administration is seeking to expand. But you won’t necessarily get benefits such as maternity care or prescription drugs.

Yesterday was the deadline to comment on a proposal from the Department of Health and Human Services to let people buy these lean, short-term plans for a full year instead of just three months — and the agency got lots of mail from industry groups and medical associations urging it to modify or change its course.
Read More »

Cancer Policy

“Cancer Control in American Indian and Alaska Native Populations: A Conversation with Dr. Shobha Srinivasan”

Via National Cancer Institute (NCI) — American Indian and Alaska Native (AI/AN) populations are among the underserved minority groups in the United States and are disproportionately affected by certain cancers. NCI’s Division of Cancer Control and Population Sciences (DCCPS) supports research to reduce the burden of cancer in these populations, working in collaboration with AI/AN tribes and communities.

In this interview, sociologist Shobha Srinivasan, Ph.D., health disparities research coordinator in DCCPS, discusses some of these disparities and NCI’s efforts to address them. To highlight the cancer control research challenges and opportunities, DCCPS is launching “A Seat at the Table,” a video on cancer control research in AI/AN populations, in recognition of National Minority Health Month and National Cancer Control Month.
Read More »

“‘Rapid Autopsy’ Programs Seek Clues To Cancer Within Hours Of Death”

Via Kaiser Health News — Scientists recognize the value of examining tissue from multiple sites soon after death and obtaining larger samples than they could while a patient was living. Cancer cells can be retrieved during such autopsies and kept alive, allowing researchers to experiment with ways to treat — or kill — them.
Read More »

“Cancer centers sell out science when they advertise clinical trials as treatment”

Via STAT News Opinions — In a promotional video, the MD Anderson Cancer Center advertises clinical trials alongside immunotherapy and proton-beam therapy as one of its many ways of “fighting cancer.” Cancer Treatment Centers of America promotes clinical trials as part of its “commitment to bringing our patients new and innovative cancer treatment options.” You may have seen billboards or heard radio spots with similar messages. But what you are actually seeing and hearing in such advertising is a betrayal of ethics and science.

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Suggesting that trials give patients ‘an edge’ obscures the fact that most new drugs turn out not to be superior to standard care and, in some cases, are unacceptably toxic.
Read More »

Coping with Cancer

“‘Desperation Oncology’: When Patients Are Dying, Some Cancer Doctors Turn to Immunotherapy”

Via New York Times — The promise of immunotherapy has drawn cancer specialists into a conundrum. When the drugs work, a cancer may seem to melt away overnight. But little is known about which patients might benefit, and from which drugs.
Read More »

“Yes, Patients With Cancer Can Live With Metastatic Disease”

Via ASCO Connection Blog — I find that the natural history of cancer, and more importantly, the successes we have had (and continue to see) in cancer care are not easily understood. Instead, patients with cancer are treated in ways that still make me cringe—as if every cancer is a death sentence and all patients are terminal, especially if one carries a diagnosis of metastatic disease.
Read More »

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