ADVOCACY
Making Advocates of Those Who Make Change Happen
Influencing those giving children and families a psychosocial voice
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We regularly interact with members of Congress and lawmakers to develop, evolve, and build legislation to improve the psychosocial care of children with cancer.
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We collaborate with associations and childhood cancer professionals who share in our mission to improve the quality of life for children with cancer and their families throughout the cancer trajectory.
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We advocate for the psychosocial needs and care of families whose children are struggling with cancer.
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We foster a Washington, DC based focus on legislators, lobbying for needed legislation and appropriation of funds for laws that support psychosocial care research in childhood cancer.
RECENT SUCCESS
Partnership for Awareness
October 2022
September is childhood cancer awareness month. We acknowledge all the courageous children and their families affected by this disease. Around 46 children a day are diagnosed with cancer and seven children a day die from cancer in the United States (Surveillance Epidemiology and End Results Cancer Statistics Review/ National Cancer Institute, 2012).
Mattie Miracle is honored to partner with the American Psychological Association's Division 54 - Caregiver Wellbeing Special Interest Group to launch a social media campaign about the importance of psychosocial care and the evidence-based Standards guiding this support. A special thank you to Dr. Chrissy Salley (co-chair of the special interest group), Dr. Lori Wiener (co-director of the behavioral health core, NCI), and Allie Neenan (clinical psychology doctoral student) for their efforts to make this campaign a success.
The Caregiver Wellbeing Special Interest Group understands that a child's cancer diagnosis and treatment can impact the mental and physical health of parents, which can ultimately affect the child's treatment outcomes. Our goal this month is to spread awareness that optimal cancer treatment requires a comprehensive approach that addresses both the medical and psychosocial aspects of care.
We invite you to check out our Instagram, Twitter, and Facebook campaign.
Standards Inspire Advocacy
October 2022
This summer, Mattie Miracle was contacted by Alexandra (Allie) Neenan, a doctoral student at Eastern Michigan University. Allie expressed her thanks for the creation of the Psychosocial Standards of Care and discussed her interest in promoting the Standards through a social media campaign during Childhood Cancer Awareness month.
Allie designed visually appealing Instagram graphics and messages to educate the advocacy community about the 15 evidence-based Standards of Care. We are grateful for Allie's creativity, advocacy skills, and initiative to spread the message that childhood cancer is NOT just about the medicine.
Reflections from Allie Neenan, MS
I am about to enter the fifth year of my doctoral program studying Clinical Psychology at Eastern Michigan University. During this time, my research interests have largely focused on understanding how individuals impacted by childhood cancer find community and support among others going through the same thing. The Psychosocial Standards of Care, which were published while I was an undergraduate, played a major role in my decision to pursue a PhD in Psychology for the purpose of helping children with cancer.
While I had always wanted to study psychology, childhood cancer is a cause that I only became familiar with near the end of my time in college. As I approached my senior year, I knew that I wanted to find a way to combine my passion for psychology with my desire to help families affected by pediatric cancer. I remember feeling confused, even thinking, “children going through cancer don’t need therapy, they need better medicine.” I cringe when I look back on this mindset, but the truth is that many people overlook how vital psychosocial care is for children with cancer and their families.
When I learned about the Psychosocial Standards of Care, I quickly realized just how wrong I was. The Standards are unique in how thoroughly they address the needs of children with cancer and their families. These documents clearly describe the research on the psychological toll of cancer and they set the stage for why comprehensive care is so important. The Standards describe over a dozen ways that every single medical center that treats children with cancer should be working to address their psychosocial needs. The Standards helped me to understand that psychologists have the power to buffer the harm of nearly every aspect of the cancer experience - from communicating about the diagnosis, to supporting children through medical procedures, through adjusting to life in survivorship or bereavement. I went from wishing I had chosen a degree that could lead to a career helping children with cancer to realizing that the options were truly endless. Sadly, these options represent the myriad harms that children with cancer go through every day. This September, I am grateful for foundations like Mattie Miracle and the work they do to minimize the suffering caused by childhood cancer.
Shaping Policy
January 21, 2020
Supplemental Security Income (SSI) is the only source of federal income support targeted to families caring for children with disabilities, and it reaches only the lowest-income and most severely impaired children. These children live with conditions such as Down Syndrome, cerebral palsy, autism, intellectual disability, and blindness. Their vulnerable families face higher costs, more demands on their time, and more insecurity than families not caring for a child with a disability. SSI benefits help families pay rent and put food on the table. They also pay for a broad range of disability-related expenses, many of which are not offered by schools or covered by insurance — things like specialized therapies, medically prescribed diets, diapers for older children, and home modifications for accessibility.
For a child to qualify for SSI benefits, his or her family must have very low income and assets. Typically, a working family may qualify for a full benefit for a child with a disability if they earn up to about 100 percent of poverty. The benefit gradually declines as earnings rise, and eligibility phases out at about 200 percent of poverty. SSI’s benefits are modest, averaging $650 a month for a child with a disability.
Though 11 million American children have special health care needs, few meet SSI’s strict eligibility standards — either because their disabling conditions aren’t severe enough or because their families’ income and savings exceed the program’s low limits. Around 1.7 percent of all children receive SSI benefits. To qualify for SSI, a child must have a very serious condition that is backed up by medical evidence. Qualified medical professionals — physicians, licensed or certified psychologists, or certain other experts — must submit evidence of the disability; the opinions of the child’s parents or teachers do not suffice. Children can qualify based on mental or physical disorders, but only if they severely limit the child’s functioning. Mental conditions include autism, intellectual disability, schizophrenia, or bipolar disorder; physical conditions include cerebral palsy, muscular dystrophy, Down Syndrome, blindness, or cancer.
On January 21, Mattie Miracle had the opportunity to highlight the functional impairments of childhood cancer with the Committee on Childhood Cancer & Disability and the Social Security Administration. In addition, the long term consequences of these impairments were discussed in the context of the entire family system. It is the hope that our testimony provided further evidence for why all childhood cancer families need support in all forms..... medically, psychosocially, and financially.
Mattie Miracle Attended 8th Annual Childhood Cancer Summit on Capitol Hill
September 14, 2017
On September 14, 2017, the chairs of the Congressional Childhood Cancer Caucus, convened the annual summit on childhood cancer. Present were legislators, childhood cancer survivors, and advocates.
An Overview of the morning:
1) Greetings from the Caucus Chairs: Rep. Michael McCaul (R-TX 10th District); Rep. Jackie Speier (D-CA 14th District); Rep. Mike Kelly (R-PA 3rd District); and Rep. G.K. Butterfield (D-NC 1st District).
2) Perspective from Childhood Cancer Caucus member: Rep. Gus Bilirakis (R-FL 12th District).
3) Moderator of the Patient Perspective: Gregory Aune, MD, Ph.D. (Childhood Cancer Survivor and Distinguished Professor in Pediatric Cancer Research, University of Texas Health Science Center, San Antonio).
4) Patient Perspectives: Sadie Keller (age 9, Leukemia Survivor); Hannah Adams (age 13, Wilms Tumor Survivor); William Morillo (age 17, Brain Cancer Survivor); and Christie Chaudry (Leukemia Survivor and pediatric nurse practitioner).
5) The Doctor Perspective: Dr. Gregory Reaman (FDA); Dr. Stephen Chanock (NCI); and Dr. Nabil Ahmed (Texas Children's Hospital).
Mattie Miracle Attended 7th Annual Childhood Cancer Caucus on Capitol Hill
September 23, 2016
On September 23, 2016, the chairs of the Congressional Childhood Cancer Caucus, convened the annual summit on childhood cancer. Present were legislators, childhood cancer survivors, and advocates. Topics discussed: 1) Greg Simon (Executive Director of Moonshot) discussed Vice President Biden's Moonshot Initiative which is tasked to make a decade worth of advances in cancer prevention, diagnosis, and treatment, in five years. This initiative lives within all of us and the goal is to do twice as much in half the time. 2) Doug Lowy, MD (Acting Director of National Cancer Institute) discussed the core issues and the biological differences with childhood cancer - for example, there are fewer molecular changes in comparison to adult cancers, therefore making it harder to produce effective targeted therapies. 3) Three childhood cancer survivors shared their stories and insights, of which the long-term psychosocial impact of their diseases were highlighted. and 4) The STAR (Survivorship, Treatment, Access, and Research) Act would improve efforts to identify and track childhood cancer incidences, improve the quality of life for childhood cancer survivors, ensure publicly accessible expanded access policies that provide hope for patients who have run out of options, and identify opportunities to expand the research of therapeutics necessary to treat the 15,780 children diagnosed with cancer in the U.S. every year. The Bill currently has 265 co-sponsors, with 75% of the Energy and Commerce Committee signing on.
Mattie Miracle Supports the Introduction of the Comprehensive Childhood Cancer STAR Act in both the U.S. House of Representatives (H.R. 3381) and the U.S. Senate (S. 1883)
July 29, 2015
On July 29th 2015, Congressmen Michael McCaul (R-TX), Chris Van Hollen (D-MD) and Jackie Speier (D-CA), and Senators Jack Reed (D-RI) and Shelley Capito (R-WV) became co-sponsors of The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2015. The STAR Act would improve efforts to identify and track childhood cancer incidences, improve the quality of life for childhood cancer survivors, ensure publicly accessible expanded access policies that provide hope for patients who have run out of other options, and identify opportunities to expand the research of therapeutics necessary to treat the 15,780 children diagnosed with cancer in the U.S. every year. To read the House Bill (H.R. 3381) click HERE and to read the Senate Bill (S. 1883) click HERE
Mattie Miracle Collaborates with the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer. The cancer advocacy community unites to create The Star Act
June 01, 2015
In June 2015, Congressman Michael McCaul (R-TX), Congressman Chris Van Hollen (D-MD), Congresswoman Jackie Speier (D-CA), and Senator Jack Reed (D-RI) became co-sponsors of The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act. The STAR Act would improve efforts to identify and track childhood cancer incidences, improve the quality of life for childhood cancer survivors, ensure publicly accessible expanded access policies that provide hope for patients who have run out of other options, and identify opportunities to expand the research of therapeutics necessary to treat the 15,780 children diagnosed with cancer in the U.S. every year. To read more about the STAR ACT go to Senator Reed's news release. Read more...
Mattie Miracle joined the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer Roundtable
December 09, 2014
From September 2014 to the spring of 2015, the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer (CAC2) hosted a series of roundtable discussions. Participating in this unified initiative were organizations comprised of advocates and professionals from the Alliance, board members and advocacy representatives from the Coalition Against Childhood Cancer (CAC2), and independent advocates. The Roundtable was designed to convene advocates from across the community to achieve clarity around common policy goals for childhood cancer. As a result of the process, three work groups were formed to develop achievable legislative and administrative policy goals on the following issues: Maximizing Discovery Through Research; Accelerating Development and Availability of Promising Treatments; and Maximizing Delivery: Care, Quality of Life, Survivorship, and Caregiver Support. From these roundtable discussions, The Star Act was born.
H.R. 2058 - Childhood Cancer Survivors' Quality of Life Act of 2013
March 20, 2012
Mattie Miracle collaborated with Children's Cause for Cancer Advocacy and integrated psychosocial language into the Survivors' Quality of Life Act in 2011 (HR 3015). This psychosocial language remains in the Bill and was reintroduced on May 20, 2013, H.R. 2058: Childhood Cancer Survivors’ Quality of Life Act of 2013, sponsored by Jackie Speier (D-CA) with 31 co-sponsors. The insertion of psychosocial language would regulate the establishment of a center of psychosocial excellence, fund psychosocial outcome research, as well as long-term integrated medical-psychosocial follow up care for survivors. To read more about the bill go to GovTrack.
H.Res. 262 - Supporting efforts to raise awareness, improve education, and encourage research and treatment of the psychosocial needs of children, adolescents, and young adults diagnosed with a childhood cancer and their families.
March 20, 2012
Mattie Miracle began advocating on the Hill in 2010, for psychosocial awareness, support, and care. From those efforts H. Res. 262 was created, which was designed to support efforts to raise awareness, improve education, and encourage research and treatment of the psychosocial needs of children, adolescents, and young adults diagnosed with a childhood cancer and their families. Sponsored by Chris Van Hollen (D-MD) with 22 co-sponsors. To read more about the bill go to The Childhood Cancer Caucus webpage.