Children Diagnosed with Cancer: Financial and Insurance Issues

Tag Archives: childhood cancer

Financial and Insurance Issues

When your child has just been diagnosed with cancer, your top priority is ensuring that your child gets immediate access to the treatment protocols he or she needs to fight back against this terrible disease. The very last thing you want to worry about is money: whether you can afford the very best care and what it will mean for the financial future of your family. However, taking the time to consider the financial implications of childhood cancer and developing a strategy to approach them will go a long way to ensuring a happy, healthy future for everyone in your family.

At the ACCO, our goal is to support families facing a cancer diagnosis to ensure that their time and energy can be devoted to helping their child get the best possible care and treatment. Our extensive network of local groups provides on-the-ground assistance to families, including financial support and advice, help with transportation and daycare, shopping and meal-planning, and all the many little things that become so difficult when a child is in treatment. For help finding a local group near you, we encourage you to visit www.acco.org.

How to cover the expenses of cancer treatment?

The first critical step in approaching financial planning for cancer treatment is to determine whether you have private insurance and if so, what parts of the treatment are covered and by how much, and what requires advanced authorization for coverage. The paperwork can be daunting, especially at a time when you are already trying to cope with the shock, disbelief, pain, denial, and sorrow that comes from the initial diagnosis. However, there are resources available to help you, including the hospital billing office, where administrators specialize in helping families navigate through the complicated world of insurance payments, co-pays, authorizations, and other minutia associated with insurance coverage.

If you do not currently have health insurance, there are still a variety of options to ensure financial coverage for childhood cancer treatments, including signing up for health insurance through your employer if offered, purchasing a private health insurance plan, signing up for a health plan offered through state marketplaces (developed under the Affordable Care Act), or applying for Medicaid or other low-income health care assistance. Some of the factors that you may consider while comparing different plans include:

The benefits and treatment options covered by the health insurance plan
The various costs that are linked with the health plan such as co-insurance if any, co-pays, deductibles, and premiums
Whether your child’s hospital and physicians are included the network of hospitals covered by the health plan
Whether the drugs and treatment protocols required to treat your child are covered in the health plan

You may also consider speaking directly to the hospital billing staff about coverage options and any discounts available to your family to help mitigate the high cost of cancer treatments.

In addition to planning for the cost of treatment, there are a variety of additional, and potentially unanticipated costs that can easily accumulate unexpectedly during this difficult time. For example, you may need to plan accommodations for you and other family members when your child is undergoing his or her treatment, transportation costs, and child care for other children in the family. One parent may even have to leave his or her job or take unpaid leave due to the child’s treatment schedule, resulting in the potential loss of much-needed income. While it can be difficult to anticipate these auxiliary costs of fighting cancer treatment, taking the time to plan for the unexpected and relying on the support and advice of families who have been there as well can help mitigate the potentially high costs of helping your child fight–and win–the battle against childhood cancer.

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

Comprehensive Cancer Care for Children and Their Families:
Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society (2015)

Authors

Sharyl J. Nass and Margie Patlak, Rapporteurs; National Cancer Policy Forum; Board on Health Care Services; Institute of Medicine; The National Academies of Sciences, Engineering, and Medicine

Description

Childhood cancer is an area of oncology that has seen both remarkable progress as well as substantial continuing challenges. While survival rates for some pediatric cancers present a story of success, for many types of pediatric cancers, little progress has been made. Many cancer treatments are known to cause not only significant acute side effects, but also lead to numerous long-term health risks and reduced quality of life. Even in cases where the cancer is considered curable, the consequences of treatment present substantial long-term health and psychosocial concerns for children, their families, their communities, and our health system.

To examine specific opportunities and suggestions for driving optimal care delivery supporting survival with high quality of life, the National Cancer Policy Forum of the Institute of Medicine and the American Cancer Society co-hosted a workshop which convened experts and members of the public on March 9 and 10, 2015. At this workshop, clinicians and researchers in pediatric oncology, palliative, and psychosocial care, along with representatives from the U.S. Food and Drug Administration, National Cancer Institute, Children’s Oncology Group, pharmaceutical companies, and patient advocacy organizations, discussed and developed a menu of options for action to improve research, quality of care, and outcomes for pediatric cancer patients and their families. In addition, parents of children with cancer and pediatric cancer survivors shared their experiences with care and provided poignant personal perspectives on specific quality of life concerns and support needs for children and families across the life spectrum. This report summarizes the presentations and discussion of the workshop.

Topics

Publication Info

126 pages | 6 x 9
Paperback
ISBN: 978-0-309-37441-5

To download the full book click here.

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit:

Understanding the Healthcare System

For a young child, just a routine check-up or basic blood test can be absolutely terrifying. But when a child is suddenly diagnosed with cancer and facing extended hospital stays and complicated medical procedures, both the young patient and his parents have to quickly adjust to the complex, scary, and strange world of oncology and advanced medicines. The ACCO is dedicated to helping families facing a cancer diagnosis navigate this new and different world as comfortably and completely as possible, so families can focus their time and energy on comforting their child and making the best possible decisions for his or her long-term health and happiness.

So what can one expect from the healthcare system?

Children and families coping with childhood cancer face a number of challenges in the days and weeks immediately after diagnosis. When first entering into the confusing world of a hospital for tests and treatment, the medical centers or hospitals can seem confusing and even frightening; even the hospital rooms may appear scary at times. Healthcare professionals, physicians, and nurses are always well-meaning and dedicated to the long-term care of the patient, but they have many questions to ask and a lot of information to share, and the process can be simply overwhelming. Sometimes, it can even feel like the doctors and nurses are speaking a completely different and unknown language. But perhaps most frustrating is the need to handle financial concerns when all you want to do is comfort your child. Medical insurance professionals are available to help navigate through the paperwork and help you understand your coverage. In some cases, insurance companies may require advanced approval on various procedures and tests or may have queries related to payment.

So where are kids with cancer treated?

Most of the time children with cancer undergo treatment at large and advanced pediatric cancer centers located in major cities around the country. Many medical facilities specializing in pediatric oncology are members of the Children’s Oncology Group, which dictates a standard of care and prescribed guidelines so that families are well informed about all available treatment options, their benefits, and their short- and long-term risks.

Most children facing childhood cancer receive treatment in an inpatient pediatric oncology unit, although in some cases an outpatient treatment may be given at a doctor’s office, at a hospital clinic, or even at the patient’s home. In some cases, the best course of treatment may be participation in an on-going clinical trial into new and development treatment protocols; the Children’s Oncology Group maintains lists of current clinical trials and offers suggestions as to the best way to become involved in this treatment option.

Treating adolescents with cancer presents a series of unique challenges for both medical staff and parents. Adolescents want to be treated as adults and may resist treatment and hospitalization in a pediatric unit. Yet in most cases, pediatric oncology units are still the best medical option for adolescents because their cancers are more closely associated with childhood cancers than adult cancers. Many pediatric hospitals now offer separate areas designated for adolescents in order to accommodate their special emotional and physical needs.

The American Childhood Cancer Organization is dedicated to helping parents understand, navigate, and master the complicated world of pediatric oncology in order to give their child the best possible chance at fighting, and beating, childhood cancer. If your child is facing a cancer diagnosis, we encourage you to visit our website at www.acco.org and view our extensive library of free resources developed by families who have been where you are and designed to make your child’s cancer journey as easy, comfortable, and successful as possible. We are here to help you, because kids can’t fight cancer alone!

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit:

February 4-5, 2015, Workshop Summary

DOWNLOAD WORKSHOP SUMMARY PDF

DIVISION OF CANCER TREATMENT AND DIAGNOSIS AND THE OFFICE OF CANCER GENOMICS, NATIONAL CANCER INSTITUTE

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit:

Dealing with a Cancer Diagnosis

In the briefest space of time, in the time it takes to say just four little words, the normal, hectic, everyday life of a family can so easily be turned upside down. Hearing those four words that every parent dreads–“Your child has cancer”–is a life-altering experience, and indeed not just for parents, but for siblings, relatives, and even friends. The normal daily routine of the family changes overnight as families cope with the diagnosis, educate themselves on the best treatment options, comfort and care for their sick, scared child while still working, providing for their family, and trying to maintain a semblance of normalcy for siblings.

Handling all of the dramatic changes that a cancer diagnosis requires needs support. Most of this support comes from family members and friends who can supply meals, care for other siblings, transportation, and emotional support. At the ACCO, we are dedicated to offering support as well. We understand just how traumatic a diagnosis of childhood cancer is, and our resources are geared towards helping families navigate this difficult time armed with the information they need to make the right choices for their child and with tools to give their children comfort and succor as they face treatment.

Detailed information from hospitals

The biggest challenge facing parents of a childhood cancer warrior is often getting the right information in a timely fashion, so they can make informed choices about treatment. The first avenue of information is usually the oncologists and physicians, who can provide detailed information about the cancer diagnosis as well as the appropriate treatment options. They will help parents navigate the often-overwhelming amount of information on the cancer itself, the different treatment protocols available today, and short-term and long-term effects of each treatment. Unfortunately, the process of absorbing all of this information, processing it, and knowing what questions to ask can be extremely difficult. Parents often need to make a number of difficult decisions quickly, signing consent and treatment forms, and making crucial decisions about the best way forward for their child while still processing the initial diagnosis.

The ACCO offers support as well. We have an extensive on-line library of information dedicated to all forms of childhood cancers, designed to help parents find the information they need when they need it. We also provide information on current treatment protocols and available treatment drugs, as well as details on how to become involved with clinical trials that may provide a cutting-edge treatment option. With our free informational resources and wealth of experience, we hope to offer parents access to critical information they need to make critical decisions and give their children the best possible chance of fighting–and beating–this diagnosis.

Dealing with emotions

After receiving a diagnosis of childhood cancer, everything seems to happen within a very short span of time, piling even more stress into an already traumatic and difficult situation. The hours and days after after the diagnosis can seem like a bad dream or an emotional roller coaster. All parents whose children are diagnosed with childhood cancer experience some level of stress and emotional pain, but of course every individual and every family handles this experience differently depending on their cultural background, experiences in their lives, and their personal coping styles. Childhood cancer in the family can be a great shock and the beginning of a testing time for the parents.

The ACCO was founded by a group of parents who have experienced this storm themselves, so they understand how difficult it can be to deal with a cancer diagnosis. Our extensive resources, offered for free to families facing this crisis, are designed to provide families with all the necessary support, advice, and guidance they need to help their families survive and prosper while battling this dreaded disease. From informational books and newsletters, to materials designed to offer aid and comfort and make the treatment more comfortable and understandable for children, to on-line support groups composed of parents going through the exact same thing, our goal is to help families know that they are not alone and that we are here to help!

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit:

When we hear the word “cancer”, most of us immediately think of adult cancers, the ones at the center of glamorous media campaigns, well-publicized fundraising drives, and focused research efforts, such as breast cancer, colon cancer, prostate cancer, lung cancer, just to name a few. When we hear the words “childhood cancer”, most of us probably think of those same cancers, just in miniature, and assume they have the same causes and the same treatment protocols. In fact, childhood cancers are very, very different than adult cancers, and require very different, specialized treatments.

“Childhood cancer” is a general term describing more than 12 different types of cancer, each of which has numerous sub-types, and each of which requires precise treatment protocols tailored to the small, still-developing bodies of children. The American Childhood Cancer Organization is dedicated to raising awareness about the unique challenges presented by childhood cancer, and the desperate need for new and better treatment protocols that will target these dangerous cancers without the permanent and disabling late term effects that are the all-too-common result of treating childhood cancers with drugs developed to cure adult cancers. We encourage you to read about these most common forms of childhood cancer below, and support the ACCO in its mission to improve the lives of children facing this dreaded disease.

Childhood Leukemia

Leukemia is the most common form of childhood cancer, covering more than 30% of all childhood cancers. Leukemia originates in the soft inner part of the bone—the marrow—which is responsible for the development of blood cells. It usually affects the development of white blood cells that are responsible for fighting infection, compromising the body’s ability to fend off disease and heal itself, but leukemia can develop in other types of blood cells as well. The two most common forms of leukemia in children are Acute Lymphocytic Leukemia (ALL) and Acute Myelogenous Leukemia (AML). The good news is that treatments for childhood leukemia have greatly improved in the past decade, and the five-year survival rate is now over 85% for ALL, and over 70% for AML.

Central nervous system and brain tumors

This is the second most widely seen cancer in kids, making up approximately 26% of all childhood cancers. There are several categories of brain tumors and the treatment and prognosis of each of the type is different, depending on a variety of factors including where the tumor is located, the areas of the brain and/or nervous system it is affecting, and how quickly it is growing. It has been observed that children who suffer from such cancer tend to develop tumors in the lower portion of their brain, such as the cerebellum, or the spinal column. Such tumors can cause trouble with object handling, dizziness, blurred vision, vomiting, nausea and headaches.

Neuroblastoma

This type of childhood cancer starts in nerve cells inside a developing fetus or embryo, and grows into tumors in nerve clusters. While neuroblastoma can develop in any part of the body, it is most commonly found in the abdomen. It is by far the most common form of cancer in infants, and is usually diagnosed between the ages of 1 and 2, although can be diagnosed in children as old as 10. Unfortunately, early diagnosis is very difficult, and in 2 out of 3 cases, the disease has already spread to the lymph nodes by the time of diagnosis.

Wilms Tumor

Wilms Tumor develops in or near one or both kidneys, and may even begin developing while the children is still in the womb. It is usually diagnosed in children between the ages of 3 and 4 years old, and is rarely seen in kids above 6 years old. It usually shows as a lump or swelling in the abdomen. The child may often have other symptoms such as poor appetite, nausea, pain, and fever. Wilms Tumor contributes to about 5% of cancers in children.

Bone cancers

Bone cancers in children usually fall into one of two main groups. The most common form—Osteosarcoma—develops in the bones around the knees or near the ends of the long bones of the legs, although it does occasionally occur in the arm bone near the shoulder, the hip bone, or even the jaw. Ewing sarcoma (Ewing family of tumors) is a less common form of bone cancer, usually forming in the pelvis, the chest wall (ribs and shoulder blades), or the middle of the long bones of the leg. While both forms of bone cancer are most commonly diagnosed in teenagers and older children, they can be found in younger children as well. There are some commonalities between these two types of bone cancer, but they respond differently to current treatment protocols.

If you are interested in learning more about these or other forms of childhood cancer, if you would like to know more about the critical need for additional research into the causes and appropriate treatments for childhood cancer, or you would like to support the ACCO’s mission to support all children coping with cancer or its long-term effects and their families, we encourage you to visit www.acco.org to find out how you can help!

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit:

Friends,

We are pleased to be able to announce that Dr. Peter Adamson, attending Physician in the Division of Oncology at The Children’s Hospital of Philadelphia (CHOP) has been named by President Obama to the National Cancer Advisory Board today. Many of you have raised your voices and expressed the importance of having a pediatric oncologist in the Board, so we are gratified to be able to make this announcement.

We are also pleased that this announcement comes as the Administration, including the National Cancer Institute (NCI), is scaling up the Precision Medicine Initiative, which was announced by President Obama in his State of the Union address earlier this year. This initiative aims to enable a new era of medicine through research and technology that empowers patients, researchers, and providers to work together toward development of individualized treatments. As a part of this initiative, the President has included a request for $70 million in funding for NCI to scale up efforts to identify genomic drivers in cancer and apply that knowledge to the development of more effective approaches to cancer treatment. The Initiative also calls for the development of a research cohort of a million or more participants.

As we work with the teams at NIH, FDA, and ONC to scale and shape the cohort and this Initiative as a whole, we are eager to work with you to ensure that the pediatric cancer community’s voices are heard. You can learn more about the Initiative and sign up for updates here: www.whitehouse.gov/precision-medicine. NIH will also be hosting a workshop on patient participation in the cohort on July 1 and 2, and I would encourage you to tune in and participate online. Information on ways to engage in that workshop is located here: www.nih.gov/precisionmedicine/events.htm.

We were pleased to be able to bring the pediatric cancer community together last September and hope to continue to build upon the dialogue we began at that convening, including the announcement that the White House Office of Management and Budget would be disaggregating spending in a way that would report pediatric cancer research totals.
Best,

Fae M. Jencks
Senior Policy Advisor for Public Engagement
White House Office of Science and Technology Policy
202-456-6008 | fjencks@ostp.eop.gov

@whitehouseostp

www.whitehouse.gov

President Obama announced his intent to appoint the following individuals to key Administration posts:

Dr. Peter C. Adamson, Appointee for Member, National Cancer Advisory Board

Dr. Peter C. Adamson is attending physician in the Division of Oncology at the Children’s Hospital of Philadelphia (CHOP), a position he has held since 1999. Dr. Adamson has been Chair of the Children’s Oncology Group, supported by the National Cancer Institute (NCI), since 2010. He was Chief of the Division of Clinical Pharmacology and Therapeutics at CHOP from 1999 to 2014, and also served as Director of the Office of Clinical and Translational Research from 2005 to 2011. He served as Professor of Pediatrics and Pharmacology and Associate Professor of Pediatrics and Pharmacology at the University of Pennsylvania from 1999 to 2006. Dr. Adamson was an investigator in the Pediatric Oncology Branch of NCI from 1995 to 1999, and he served in the United States Public Health Service from 1994 to 1997. Dr. Adamson was the Children’s Cancer Foundation Research Scholar from 1992 to 1994. He was a Biotechnology Fellow from 1990 to 1992 and a pediatric hematology/oncology fellow at NCI from 1987 to 1990. He began his pediatric career as a resident at CHOP from 1984 to 1987. Dr. Adamson received a B.A. from Wesleyan University and an M.D. from Cornell University.

Dr. Deborah Watkins Bruner, Appointee for Member, National Cancer Advisory Board
Dr. Deborah Watkins Bruner is currently the Robert W. Woodruff Professor of Nursing at the Nell Hodgson Woodruff School of Nursing, Professor of Radiation Oncology, and Associate Director for Outcomes Research at the Winship Cancer Institute of Emory University, positions she has held since 2011. Before joining Emory University, Dr. Bruner served at the University of Pennsylvania as Professor of Nursing and Radiation Oncology from 2006 to 2011 and as co-Leader of the Cancer Prevention and Control Program at the Abramson Cancer Center from 2008 to 2011. From 1989 to 2006, Dr. Bruner held various positions at the Fox Chase Cancer Center, including Nurse Manager/Clinical Specialist in the Department of Radiation Oncology, Director of the Prostate Cancer Risk Assessment Program, and Director of the Symptoms and Outcomes Research Program. From 1986 to 1989, Dr. Bruner was a Gyn-Oncology Clinical Nurse Specialist/Program Coordinator at the Albert Einstein Medical Center. She served as Research Nurse for Burns and Trauma at Crozer-Chester Medical Center from 1985 to 1986. Dr. Bruner began her career as a Staff Nurse at the Crozer-Chester Medical Center from 1978 to 1985. Dr. Bruner received a B.S.N. from West Chester University, an M.S.N. in Oncology and an M.S.N. in Administration from Widener University, and a Ph.D. from the University of Pennsylvania.

Dr. Yuan Chang, Appointee for Member, National Cancer Advisory Board
Dr. Yuan Chang is currently Professor of Pathology at the University of Pittsburgh, a position she has held since 2002. Dr. Chang has been a Distinguished Professor of Pathology since 2012, and is the University of Pittsburgh Cancer Institute Chair of Cancer Virology. Dr. Chang served in a few positions at the Columbia University College of Physicians and Surgery during his tenure, first as Assistant Professor of Pathology from 1993 to 1997, Associate Professor of Pathology from 1997 to 2000, and then as Professor of Pathology from 2000 to 2002. From 1991 to 1992, Dr. Chang was Clinical Instructor in the Department of Pathology at Stanford University Medical Center. She has also held a number of clinical assignments, including Assistant Attending Pathologist at Columbia Presbyterian Hospital from 1993 to 1997, Associate Attending Pathologist from 1997 to 2000, and Attending Pathologist from 2000 to 2001. She is a member of the National Academy of Sciences. Dr. Chang received a B.S. from Stanford University and an M.D. from the University of Utah College of Medicine.

Dr. Timothy J. Ley, Appointee for Member, National Cancer Advisory Board
Dr. Timothy J. Ley is Director of the Stem Cell Biology Section in the Division of Oncology at Washington University School of Medicine, a position he has held since 2000. Dr. Ley has also served as the Associate Director for Cancer Genomics at The Genome Institute at Washington University since 2008. He has held various faculty positions at Washington University since 1986, including Professor of Medicine and Genetics, Director of the Hematopoiesis Research Center, and Director for Basic Science at the Alvin J. Siteman Cancer Center. From 1984 to 1986, Dr. Ley was senior investigator for the National Heart, Lung, and Blood Institute at the National Institutes of Health, where he previously served as Clinical Associate from 1980 to 1983. From 1983 to 1984, he was a Hematology-Oncology Fellow at Washington University Medical Center. He completed his residency at Massachusetts General Hospital from 1979 to 1980, and he served as a Commissioned Officer with the United States Public Health Service from 1980 to 1986. He is a past president of the American Society for Clinical Investigation and was Chair of the Board of Scientific Counselors for the National Human Genome Research Institute from 2009 to 2013. He is also an elected member of the Institute of Medicine of the National Academy of Sciences and of the American Academy of Arts and Sciences. Dr. Ley received a B.A. from Drake University and an M.D. from Washington University School of Medicine.

Dr. Max S. Wicha, Appointee for Member, National Cancer Advisory Board
Dr. Max S. Wicha is the Madeline and Sidney Forbes Professor of Oncology at the University of Michigan Comprehensive Cancer Center, a position he has held since April 2015. Dr. Wicha has served as Attending Physician for Medical Oncology In-Patient and Consultation Services for the University of Michigan Health System since 1980. In 1986, he founded the University of Michigan Comprehensive Cancer Center and served as its Director since its inception until earlier this year. Dr. Wicha has held various positions at the University of Michigan Medical School since 1980, including Assistant Professor, Associate Professor, Chief of the Division of Hematology/Oncology, Director of the Simpson Memorial Research Institute, and Distinguished Professor of Oncology. From 1977 to 1980, Dr. Wicha served in several capacities at the National Cancer Institute including Research Associate, investigator in the Laboratory of Pathophysiology, and then as a Clinical Oncology Fellow. Dr. Wicha served as a Commissioned Officer in the United States Public Health Service from 1977 to 1980 and completed his residency at The University of Chicago Hospitals and Clinics from 1975 to 1977. He is a past President of the American Association of Cancer Institutes and a Fellow of the American Academy of Arts and Sciences. Dr. Wicha received a B.S. from the State University of New York at Stony Brook and an M.D. from Stanford University School of Medicine.

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit:

“Reason this person is a Gold Ribbon Hero: Emily was diagnosed with Ewings Sarcoma in 2010. She missed half of 7th grade and all of 8th grade, but was able to return for 4 years of high school and graduate with a 3.867. She is looking very forward to starting her college career at The Ohio State University in the fall with a Bio Chem major and hopes to one day be a research doctor in oncology. She is funny, feisty, and enjoys each day and new experience she is given. She says that she is thankful for cancer,..that “cancer” doesn’t define her, but the journey through it did. She has relied on God for her strength and is a daily inspiration to me.” – Mary D.

How will you #StepUp for Action Days in 2015?

A coordinated community effort is underway to storm Congress on foot and online. Childhood cancer organizations throughout the country are joining together to send Congress the message of #StepUp: Make Childhood Cancer a National Child Health Priority.

We have created #StepUp Selfie Signs for you to print and hold in your Selfie, or you can just write #StepUp: Make Childhood Cancer a National Child Health Priority on a piece of paper and hold it up. To use a sign, click on a link below and print. Please be sure to send in your selfie on our Facebook Page or by email to cperry@acco.org. Thank you and we can’t wait to see how you will #StepUp!

#StepUp Sign on Gold Background (to print on white paper)

#StepUp Sign on White Background (to print on gold paper)

History will be made next week when approximately 300 advocates come to Washington, D.C. for this year’s annual Childhood Cancer Action Days on June 15-16, hosted by the Alliance for Childhood Cancer. In the days leading up to-and continuing through-next week’s big event we need your help to make sure our voices are heard loud and clear by members of Congress.

There are many ways for you to help over the next 7 days of this community campaign:

Send in your #StepUp Selfies for us to share and gain national attention. You can share them on Facebook or email them to cperry@acco.org.
Take action online! Add the #StepUp hashtag to any of your posts so we can follow along.
Visit the #StepUp image bank to find images and messages to share.
Change your Facebook and Twitter profile photos to the #StepUplogo found in the image bank or below.
Help us go viral! Share #StepUp posts with your friends and ask them to share with their friends!
Please participate in the Faces of Childhood Cancer project. For details please Click Here.
Starting Monday morning when advocates are in town, tweet your members of Congress using the Twitter-based action platform SoundOff.

Please follow our Facebook and Twitter pages for new posts to share with your friends and family about why we #StepUp for children with cancer.

ACCO is proud to be a leader in this joint effort of the Alliance for Childhood Cancer. In the coming week, we’ll take one step in a long journey toward making childhood cancer a National Child Health Priority.

Please join us as we #StepUp to make our united voices heard on behalf of children with cancer!

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit:

ACCO Mourns the Death of Dr. Robert Arceci, Childhood Cancer Warrior

It is with the deepest sadness, grief, and disbelief that the American Childhood Cancer Organization learned on Monday of the unexpected passing of one of childhood cancer’s greatest, most valued warriors: Dr. Robert Arceci, Director of the Children’s Center for Cancer and Blood Hematology and Oncology at Phoenix Children’s Hospital in Arizona. Dr. Arceci was well-known to both the medical community and the close-knit childhood cancer community for his passionate and wholehearted dedication to the fight against childhood cancer in all its forms. As Co-Director of PCH’s Institute of Molecular Medicine, Dr. Arceci was in the midst of conducting ground-breaking research into new and innovative treatment options for childhood cancer with the ultimate goal of developing personalized treatment options. In his own words, he hoped this research would one day, “improve outcomes…and acquire that dream of really getting rid of this darn disease.”

Yet for many, many families who have faced or who are facing the difficult journey through childhood cancer, Dr. Arceci will be missed primarily for his devotion to the children themselves. Despite his dedication to research and teaching, he remained intimately involved in the treatments of children battling childhood cancer, and always made himself available for consultations and second opinions to families across the country. In the words of Ruth Hoffman, ACCO’s Executive Director, “Dr. Arceci…was always available to give his time and expertise to families no matter where he was or how busy he was. He provided second opinions to so many ACCO families over the years, giving hope when it seemed there was none.” And ultimately, he himself noted that he personally felt the loss of every single child he treated, but could not save.

Dr. Arceci’s current research at the Institute of Molecular Medicine is focused on developing new and innovative therapeutic targets and immunotherapies designed to improve treatment outcomes while reducing the negative, long-term side effects that are the all-too-common result of today’s available treatments. His research teams at PCH include multidisciplinary investigators focused on developing scientifically robust, molecularly-based, and ultimately individualized, treatment options for leukemia and other childhood cancers. In addition to his role at PCH, Dr. Arceci also served as a Professor of Pediatrics at the University of Arizona, College of Medicine. Before coming to Phoenix, Dr. Arceci was Director and King Fahd Professor of Pediatric Oncology and Professor of Oncology and Pediatrics at the Johns Hopkins University School of Medicine, and prior to that was Director of Pediatric Hematology/Oncology at Children’s Hospital Medical Center in Cincinnati. He received his MD from the University of Rochester, and completed his residencies and fellowships in pediatric hematology/ oncology at The Children’s Hospital, Boston and Harvard Medical School.

The ACCO would like to express its sincere condolences to Dr. Arceci’s family, friends, and colleagues in this difficult time, as well as to the entire childhood cancer community while it mourns this passing of this great man and childhood cancer warrior. In the words of Ms. Hoffman, “He will be terribly missed!”