STATE AND LOCAL ADVOCACY IN 2020
Making a Difference Close to Home
In childhood cancer advocacy we often look to Washington. But many issues affecting children with cancer and their families are best addressed, with more impact, at the state and local level.
There are scores of childhood cancer advocates working in state capitals pushing for better treatments, access and care for patients, families and survivors. To support those advocates Children’s Cancer Cause is focusing attention and resources on their efforts and encouraging you, your family, neighbors and community to help them in their campaigns.
In this section, we’re highlighting state legislation, pending bills, resources and models to help give state advocates the ammunition needed to add your voice to existing efforts – or to start one of your own.
Don’t know who to contact in your state? Let us know and we’ll help offer direction; either with an organization that is working on an initiative or connecting you with other advocates in your state.
The State Childhood Cancer Agenda - A Sampling:
Some of the issues that have been advanced by childhood cancer advocates at the state level offer great templates to improve the outcomes and survivorship of patients:
CHILDHOOD CANCER LICENSE PLATE DESIGNATIONS
Wisconsin, New York, Kentucky and a number of other states have available Childhood Cancer license plates, some of which include tax-deductible donations to pediatric cancer programs or research as part of the regular registration fee.
STUDENT LOAN DEFERMENT FOR AYA CANCER PATIENTS
Legislation passed in Congress in 2018 allows Federal Direct student loan borrowers who are undergoing active treatment for cancer may defer repaying their Federal Direct student loans for the duration of treatment and for 6 months afterward. Similar legislation has been pending in state capitals.
TECHNOLOGY GRANTS TO SCHOOLS TO PROVIDE FOR REMOTE SCHOOL ATTENDANCE
These bills provide grants to public schools to purchase technology to allow students with medical conditions to participate in classrooms remotely if in-person attendance is not possible.
SURVIVORSHIP CARE PLANNING FOR PEDIATRIC CANCER PLANS UNDER MEDICAID.
Both a federal and state issue, survivorship care plans—composed of the treatment summary and long-term care plans – are not currently reimbursable.
FERTILITY PRESERVATION COVERAGE FOR YOUNG ADULTS UNDERGOING CANCER TREATMENT
A number of states have passed or have pending legislation requiring health insurance coverage for fertility preservation for insureds diagnosed with cancer.
MEDICAID WAIVERS THAT ENABLE ENHANCED PEDIATRIC HOSPICE CARE IN THE HOME SETTING
For example, the Virginia Medicaid Waiver provides attendant/home nursing/personal care for those who are disabled at any age, including children, with up to 49 hours of care per week.
PAID LEAVE FOR PARENTS ATTENDING TO CHILDREN UNDERGOING CANCER TREATMENTS
As of 2019, only four states — California, New Jersey, New York and Rhode Island — currently offer paid family and medical leave.
STATE RESOLUTIONS OF CHILDHOOD CANCER AWARENESS
A number of states have recognized September as Childhood Cancer Awareness Month, generating a more receptive environment for other childhood cancer initiatives. (Some model language and guidance is provided below.)
State Bills to Watch in 2020:
California Assembly Resolution 101: Pediatric cancer.
Resolution Passed on January 31, 2020 →
Florida Senate Bill 412: License Plates
Status →
Florida Senate Bill 840: Cancer Clinical Trials
Status →
New Jersey Senate Bill 361: Provides Medicaid coverage for certain home visitation program services under certain circumstances.
Status →
New York Assembly Bill 1062: Relates to funds for innovation grants for programs to create public/private partnerships to develop and implement innovative, technology-based learning strategies.
Status →
New York Assembly Bill 3205: Relates to establishing a cancer treatment credit
Status →
New York Assembly Bill 4173: Requires accident and health insurance policies to cover the cost of genetic testing of persons with a family history of cancer
Status →
New York Senate Bill 1493: Relates to insurance coverage for standard fertility preservation services
Status →
Virginia House Bill 1445: Reproductive health services; health benefit plans to cover costs of specified health care services.
Status →
Virginia Senate Bill 917: Reproductive health services; health benefit plans to cover costs of specified health care services.
Status →
Legislative Web Pages for Fifty U.S. States and D.C.
State & Local Proclamations
SAMPLE PROCLAMATION:
PROCLAMATION CHILDHOOD CANCER AWARNESS MONTH SEPTEMBER 2019
Whereas, in the past year, more than (##) children have been diagnosed with cancer and in the past year, ## children have lost their lives to cancer, and
Whereas, childhood Cancer is the #1 disease related killer of kids in the U.S. 1 in 5 children are terminal at diagnosis. 3 in 5 suffer life altering impacts of treatment that significantly alter their quality of life. 1 in 285 children will be diagnosed with cancer before the age of 20, and
Whereas, childhood cancer is on the rise. Childhood cancers and adult cancers are different, yet we continue to use inappropriate adult cancer protocols on kids with many times devastating effects. The lack of childhood cancer research has tremendous impact to kids and significant costs to society, now and in the future, and
Whereas, despite these facts, childhood cancer research is vastly and consistently underfunded. In 25 years the FDA has initially approved only two drugs for any childhood cancer and half of all chemotherapies used for children’s cancers are over 25 years old, and
Whereas, the incidence of childhood cancer is on the rise with an estimated 15,700 children diagnosed every year (43 per day) in the United State alone. Of those 43 children per day, 8 will die, and
Whereas, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65 years of age and an estimated 2,900 children die each year of cancer in the United States alone. The average age of death for a child with cancer is 8, causing a child to lose 69 years of expected life, and
Whereas, many adult cancers can be diagnosed early, in 80% of kids, cancer has already spread to other areas of the body by the time it is diagnosed, and
Whereas, the causes of most childhood cancers are unknown and at the present, childhood cancer cannot be prevented, and families who are or have been in treatment work tirelessly to change these alarming statistics.
Therefore, be it resolved, that the (City/County/State/School) recognizes September 2019 as National Childhood Cancer Awareness Month and encourages continued research into treatments for childhood cancer, access to care for patients, support for families and continued care for survivors.
By encouraging state and local government officials to issue or pass proclamations in support of Childhood Cancer Awareness Month, it demonstrates to the community a commitment to raising awareness about the vulnerabilities of children in your area diagnosed with childhood cancers, access to quality treatment, and the lifelong challenges for survivors.
The Coalition Against Childhood Cancer (CAC2) offers a terrific resource with tips to help draft and promote a state or local Childhood Cancer Awareness Month proclamation, including templates you can use.
CAC2 Proclamation Guide (PDF) →
It is best to contact public officials at least three months in advance, as most will require at least a month prior to your targeted event to publicize the proclamation. Although Childhood Cancer Month is in September, many legislatures and city governments are not in session during the summer months, so the months of February through May is an ideal period to make your requests.
Once the proclamation is approved, ideally by the first week in September, visit government buildings, local businesses, health clubs (especially if they have a kids center), libraries, hotel lobbies, schools, hospitals, urgent care facilities, pediatrician offices, daycares to see if they will allow you to display copies of proclamations and other awareness materials.
Arrange to have the proclamation featured in a local publication or local area news Facebook page to increase awareness. Distribute electronic copies of the document to the local or metro desks of local newspapers, along with a press release to announce the signing of the National Childhood Cancer proclamation and include a sample of a short article that can be used.
And if you need any help, be sure to let us know at info@childrenscause.org