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NCCS Session at CancerCon 2015 Presents Two Types of Advocacy

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This past weekend Kelsey Nepote of NCCS was honored to present a session on patient advocacy at the Stupid Cancer 2015 CancerCon event in Denver. As the largest oncology conference of its kind for the young adult cancer movement, CancerCon brought out hundreds of survivors at different points in the continuum of care, as well as caregivers and loved ones. The NCCS session, titled “The Patient Advocate: Changing Cancer Care in the US,” discussed two types of advocacy—self-advocacy and public advocacy.

In cancer survivorship, advocacy is a continuum. It may begin at the personal level, but along the survivorship journey, self-advocacy efforts may broaden to include first group or organization advocacy, and later may move to public advocacy efforts. For many, advocacy offers some stability and a feeling of regaining some control in life. It’s also a good tool for reaching out to others. For individuals interested in becoming advocates, share your story and connect with us through our email network. For those who were unable to attend the NCCS advocacy session, view the NCCS Session CancerCon 2015 PowerPoint Presentation.

Check out some of our favorite tweets from this year’s meeting:

https://twitter.com/TheALCF/status/592102701460115457

 

 

 

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Exploring Access to Unapproved Therapies

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In a series entitled, “When Unapproved Drugs Are the Only Hope,” Meg Tirrell of CNBC takes an in-depth look into the complicated issue of patient access to drugs that have not yet been approved by the FDA, also known as “compassionate use” or expanded access programs (EAPs). She presents the story of 15-year-old Nathalie Traller, who has a rare cancer called alveolar soft part sarcoma and who is unable to participate in a clinical trial, for which she otherwise meets the criteria, because of her age. She also discusses several other patients who waged high-profile media and online campaigns to gain access to unapproved drugs – in some cases successfully, and in other cases not.

In addition to presenting the compelling human stories of patients who are desperate to gain access to medicines, she discusses the complicating factors that can slow or even derail drug approvals for use by all patients, as well as the reasons that drug companies deny many compassionate use requests. Tirrell also pointed to a drug that seemed to have promise in early studies, prompting the establishment of an EAP, ultimately failed. Finally, she interviews prominent ethicist Dr. Arthur Caplan of New York University, who has questioned the fairness of how compassionate use requests are handled in response to public pressure.

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WCOE: Pediatric Cancer Survivorship Challenges and an ACA Progress Report

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What Caught Our Eye (WCOE) Each week, we take a closer look at the cancer policy articles, studies, and stories that caught our attention.
A PBS Newshour segment, “Pediatric Cancer Survivors Face a Lifetime of Health Challenges,” discusses the late effects and potential secondary cancers that survivors of pediatric cancers face. The piece puts a human face on the challenges with its profiles of Laura Allaire, an adult survivor of pediatric cancer, and eleven-year-old Samantha Schwarz, who is being treated for a secondary cancer that resulted from treatment when she was a baby. Both are patients of the Survivors of Childhood Cancer Program at the University of California San Francisco (UCSF). Dr. Robert Goldsby, director of the program, said “The good news is, more people are surviving cancer. The bad news is those that survive, more than half have a long-term issue.”

“The good news is, more people are surviving cancer. The bad news is those that survive, more than half have a long-term issue.”
UCSF has developed a health “passport”, what we also call a Survivorship Care Plan, which provides a guide for pediatric cancer survivors. The passport is a unique approach to care plans – it is wallet-sized and includes a treatment summary on one side and recommended follow-up, based on specific risk factors resulting from the type of cancer and the treatment, on the back side.

The New England Journal of Medicine published, “Health Care Coverage under the Affordable Care Act — A Progress Report,” written by Drs. David Blumenthal and Sara Collins of The Commonwealth Fund, which also published a summary of the findings. The report finds that as of May 1, 2014, 20 million Americans have gained health coverage through various mechanisms of coverage expansion under the Affordable Care Act. The 20 million figure includes not only individuals who purchased policies through exchanges, but also young adults enrollment on parents’ plans, policies purchased directly from insurers, and Medicaid expansion.

“…the growth of premiums will continue as long as health care costs grow.”
The report also considered the impact of “narrow networks,” a tool used by insurers to keep premiums low by requiring enrollees to use low-cost providers or pay more for using out-of-network providers.  “Insurers are likely to continue to use narrow networks as a strategy to keep premiums affordable. The question is how these restrictions on choice affect the actual or perceived value of the insurance products that are sold in the marketplaces.” The authors suggest that if consumers believe they cannot get the care they need, they may opt out of purchasing plans. Both the federal government and states are considering ways to address network adequacy.

The report concludes, “The unavoidable truth is that the growth of premiums will continue as long as health care costs grow.  Narrow networks are just one solution that health plans are likely to use. The long-term success of the ACA is linked inextricably to the affordability of health care in the United States, a larger problem that the law addresses through other provisions that have drawn far less attention than the enrollment numbers.”

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A New Addition to Our Policy Team: Kelsey Nepote’s First Assignment with Alliance for Childhood Cancer Action Days

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Kelsey and Berk

“My niece was diagnosed with Acute Lymphocytic Leukemia at the age of five in October 2013. Her diagnosis was the impetus for me to seek out a position in an organization that would allow me to influence the delivery system of cancer care and advocate for cancer survivors and their families.”

On Monday of last week it was with great pleasure that I started in my new position at NCCS as Policy and Advocacy Manager. My first assignment was to attend the Alliance for Childhood Cancer Action Days, which NCCS first reported on in June. This two-day event had significant meaning to me personally as my niece was diagnosed with Acute Lymphocytic Leukemia at the age of five in October 2013. Her diagnosis was the impetus for me to seek out a position in an organization that would allow me to influence the delivery system of cancer care and advocate for cancer survivors and their families.

During the first day, parents, children, family members, and other advocates gathered together for training and presentations focused on one critical issue, the need for increased funding for pediatric cancer research. The pediatric cancer field is in serious need of new discoveries in treatment and other innovations in care. For example, when compared to advances in adult cancer drug development, very few drugs have been approved to treat children with cancer and even fewer have been developed specifically to treat children with cancer. Astonishingly, over the last 20 years only one drug has been approved for any childhood cancer. While the tone in the room was heavy with loss and frustration, there were several stories of hope but few of progress.

On day two, advocates took to Capitol Hill and made two requests of congressional offices—co-sponsor the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act (H.R. 2607/S. 1251) and support appropriating $5.26 billion to the National Cancer Institute (NCI) in FY 2015. Originally enacted in 2008, the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act would expand the research of childhood cancers, improve efforts to identify and track childhood cancer incidences, and identify opportunities to expand the development and research of therapeutics. The NCI budget has remained flat over the last 10 years but when accounting for inflation, the budget has decreased by more than $1.1 billion since 2003, seriously compromising its purchasing power. In addition, due to a lack of private industry funding, federal funding is particularly crucial as the NCI provides virtually all of the funding for pediatric cancer research.

Throughout the congressional visits I had the privilege of escorting a couple to the six offices of the Kansas delegation, my home state, and hear them tell their story of their son Chase who was diagnosed with stage three embryonal rhabdomyosarcoma in his back at four weeks old. Because rhabdomyosarcoma in the paraspinal muscles is rare, Chase’s oncologist regularly participated in conversations with other pediatric oncologists through the Children’s Oncology Group (COG), an NCI supported clinical trials group, to determine the best treatment plan. Chase’s treatment lasted 18 months and included a resection surgery that removed many vertebra and ribs. Despite Chase’s devastating diagnosis and treatment plan, he is currently three years post-treatment with no signs of cancer. His parents are incredibly grateful for the treatment that saved their son’s life but they are fully aware that he will have life-long complications and limitations due to his treatment that could impact his quality of life. Chase’s parents are looking for significant advances in pediatric cancer research in hopes that no other child will be subject to the harsh treatments Chase experienced.

Post by Kelsey Nepote

Childhood Cancer Action Day

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WCOE: Childhood Cancer Action Day, NCCS Provides Patient Perspective at IOM Workshop, and Pre-Hospice Program Report

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What Caught Our Eye (WCOE) Each week, we take a closer look at the cancer policy articles, studies, and stories that caught our attention.
It is unfortunate that our current system and incentives focus on volume, rather than patients’ health and well-being.
In a blog post on The Hill, Stephen Crowley urged Congress to “step up” funding for pediatric cancer research, as more than 250 advocates convened in Washington, D.C. for the Alliance for Childhood Cancer Action Day. NCCS is a member of the Alliance and was pleased to participate in and sponsor the advocacy effort. Crowley pointed to a 30% decline in purchasing power of the National Cancer Institute (NCI) over the last decade, the small percentage that NCI devotes to pediatric cancer research, and the lack of incentives for private investment in pediatric cancer research. He also points out the serious, long-term health consequences for survivors of childhood cancer.

Oncology Times reported on a recent Institute of Medicine (IOM) workshop, “Ensuring Patient Access to Cancer Drugs.” NCCS CEO Shelley Fuld Nasso was a panelist at the workshop and provided the patient perspective on access to cancer drugs and communicating with patients about the cost of treatment. She reflected on the concerning trends in the cancer care system that result in barriers to access to care for patients. She also noted that the current reimbursement system does not value what matters to patients – the time spent with their physician and care team. The Institute of Medicine has posted videos from the workshop.

A report by KQED in California looked at a pre-hospice program offered for patients with multiple chronic conditions. The program is for patients who do not qualify for hospice, yet need assistance managing their health. Unfortunately, in our current fee-for-service payment environment, the services provided are not reimbursable. And services that keep people out of the hospital mean lost revenue for hospital systems. Yet the services would help patients maintain quality of life and comfort. It is unfortunate that our current system and incentives focus on volume, rather than patients’ health and well-being.

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Take Action: The Alliance for Childhood Cancer “2014 Childhood Cancer Action Days”

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A diagnosis of childhood cancer is devastating and impacts families for many years. While we have seen progress in survival for some types of childhood cancer, it remains the number one cause of death by disease for children in our country. Moreover, of the nearly 380,000 survivors of childhood cancer now living in the U.S., most experience significant and distressing symptoms and conditions – sometimes appearing years after their treatment ends in the form of late effects resulting from their life-saving treatments, causing health challenges that last their lifetime.

As an advocate for all cancer survivors, NCCS is a member of the Alliance for Childhood Cancer — a forum of national patient advocacy groups and medical and scientific organizations which works collaboratively to advance research and policies to prevent cancer, and improve public education, and the diagnosis, treatment, supportive care and survivorship of children and adolescents with cancer. We will be participating in the 2014 Childhood Cancer Action Days on June 23rd and 24th, an event that includes issues and advocacy training and Capitol Hill visits with members of Congress and their staff. The Alliance goal is to provide the childhood cancer community – parents, children, and others – with the opportunity to visit their legislators and advocate for the important childhood cancer issues currently before Congress.

There are many ways for you to help. Check out this blog post from the American Childhood Cancer Organization or this post from Children’s Cause for Cancer Advocacy for more information and details about getting involved.

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NCCS Joins Alliance for Childhood Cancer in Submitting Comments to FDA

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NCCS joined the Alliance for Childhood Cancer in submitting comments to the Food and Drug Administration (FDA) following the January 2014 public workshop on complex issues in developing drug and biological products for rare diseases. The Alliance encouraged the FDA to consider the issues specific to pediatric cancers that may be different from other rare disease and to continue to adopt a flexible approach to risk-benefit assessment for pediatric cancer drug development. Additionally, the Alliance urged the FDA to establish clinical trial endpoints that reflect quality of life concerns.

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NCCS Responds to Recent Data on Childhood Cancer Survivorship Issues

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A recent edition of the Journal of Clinical Oncology (JCO) has attracted our attention for the disturbing statistics it revealed about the issues related to the acceleration of aging among adult survivors of childhood cancer. For 27 years, the National Coalition for Cancer Survivorship (NCCS) has focused on patient-centered policy matters dealing with basic, clinical, and behavioral cancer research that includes information on how we can improve the quality of care and the quality of lives for people with a diagnosis of cancer. This original report, “Physiologic Frailty As a Sign of Accelerated Aging Among Adult Survivors of Childhood Cancer: A Report From the St. Jude Lifetime Cohort Study,” deserves attention not only for its compelling statistics on survivors of childhood cancer, but also for its inference for all cancer survivors who are at increased risk for premature aging and frailty.

To add more to the consequences of exposure to radiation and chemotherapy at a young age, an article published in the Annals of Internal Medicine (AIM), reports on a survey of over 2000 internists (> 61% response rate) conducted by researchers at the University of Chicago. Researchers set out to determine the attitudes and knowledge about the care of childhood cancer survivors who were treated by pediatric oncologists. Seventy two percent of those surveyed reported they never received a treatment summary from the treating physician. Internists reported feeling uncomfortable with routine medical treatment of childhood cancer survivors because of their unfamiliarity with long-term surveillance guidelines for this population. These two findings—increased frailty and premature aging of adult survivors of childhood cancer and the lack of coordination and follow-up care by internists to monitor and mitigate these consequences—requires our attention.

These data warrant further study but also call for immediate attention to clinical guidelines to lessen the consequences of exposure to anticancer therapies for children and for their follow up surveillance, which, if implemented, could lessen some of the morbidities for adult survivors of childhood cancer. In addition, treatment summaries should become necessary tools for internists, who will be doing follow-up care for this vulnerable population.

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Presidential Proclamation — National Childhood Cancer Awareness Month

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President Obama announced that the month of September will officially be known as National Childhood Cancer Awareness Month. The proclamation, released on August 30th, applauds the advancements that have been made in recent decades while noting that pediatric cancer remains the leading cause of death by disease for American children under 15.

All children deserve the chance to dream, discover, and realize their full potential. This month, we extend our support to young people fighting for that opportunity, and we recognize all who commit themselves to advancing the journey toward a cancer-free world.

The announcement also calls for improved treatment and advanced research.

Read the Proclamation >>

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NCCS endorses the Carolyn Pryce Conquer Childhood Cancer Reauthorization Act

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NCCS is a member of the Alliance for Childhood Cancer and joined with the Alliance to support the introduction of the Carolyn Pryce Conquer Childhood Cancer Reauthorization Act. This legislation would make important progress to expand child, adolescent, and young adult cancer research, improve the tracking of cancer incidences, and identify opportunities to expand the development of therapeutics for childhood cancers.

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