KAN-LogowithCCCA (1).png

State Advocacy in 2019

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 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.

To offer some inspiration and get you started, below you’ll find a listing of measures that have been pushed by other childhood cancer advocates as well as pending legislation, a listing of state legislative web sites and some sample materials. 

Copy of State Advocacy Website 2.png

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:

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

(Active in CA, VA & FL) 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

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.)

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 last year 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

Maryland has passed and New York has pending legislation to 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.

State Advocacy Website 1 (1).png

PENDING LEGISLATION - STATE LISTINGS:

The following are some noteworthy bills pending in state legislatures that have a direct or related impact on childhood cancer research, access and support.   More bills will be added as the legislative sessions progress and if you hear of any others that you think are important, please let us know so we can post them!

arizona

Senate Bill 2386 - Provides for fertility coverage
Status: House Read Second Time (2.5.19) [HB2386 Detail] 
Download: Arizona-2019-HB2386-Introduced.html

DELAWARE

HB 23 - Adds a new check-off donation box on the Delaware personal income tax return whereby individuals may choose to donate a portion of their tax refund, or designate an amount in addition to the tax they owe that will be transferred by the Division of Revenue to the Pediatric Cancer Research Fund

Status: Introduced on January 4 2019 - 25% progression 
Action: 2019-01-04 - Introduced and Assigned to Revenue & Finance Committee in House 
Status: Reported Out of Committee (Revenue & Finance) in House with 8 Favorable, 1 On Its Merits
Text: Latest bill text (Draft #1) [HTML]

kentucky

Senate Bill 65 – Establishes the Palliative Care Interdisciplinary Advisory Council within the Cabinet for Health and Family Services – including pediatric representation.

Status: Engrossed on February 20 2019 - 50% progression
Action: 2019-02-28 - posted in committee
Pending: House Health and Family Services Committee
Hearing: Mar 4 @ 12:00 pm in Annex Room 169
Text: Latest bill text (Introduced) [PDF]

missouri

Senate Bill 87 - Reauthorizes a tax refund donation check-off for pediatric cancer research. 
Status: Introduced on January 9 2019 - 25% progression
Action: 2019-03-04 - Formal Calendar S Bills for Perfection--SB 87-Wallingford
Text: Latest bill text (Introduced) [PDF]

nebraska

LB-311 - Paid Family & Medical Leave Insurance Act

Status: 2019-01-28 - Notice of hearing for February 04, 2019
Pending: Legislature Business and Labor Committee 
Text: Latest bill text (Introduced) [PDF]

new jersey

  1. Senate Bill 1538 - Provides for voluntary contributions by taxpayers on gross income tax returns for pediatric cancer research.
    Status: Introduced on February 5 2018 
    Action: 2018-06-11 - Reported from Senate Committee, 2nd Reading 
    Text: Latest bill text (Introduced) [HTML]

  2. Assembly Bill 894 - Provides for voluntary contributions by taxpayers on gross income tax returns for pediatric cancer research. 
    Status: Introduced on January 9 2018 
    Action: 2018-01-09 - Introduced, Referred to Assembly Appropriations Committee 
    Pending: Assembly Appropriations Committee 
    Text: Latest bill text (Introduced) [HTML] 

  3. Senate Bill 2133 - Mandates health benefits coverage for fertility preservation services under certain health insurance plans. 
    Status: Introduced on March 5 2018 
    Action: 2018-12-03 - Referred to Senate Budget and Appropriations Committee 
    Pending: Senate Budget and Appropriations Committee 
    Text: Latest bill text (Amended) [HTML]

  4. Assembly Bill 3150 - Mandates health benefits coverage for fertility preservation services under certain health insurance plans. 
    Status: Introduced on February 8 2018 
    Action: 2018-02-08 - Introduced, Referred to Assembly Women and Children Committee 
    Pending: Assembly Women and Children Committee 
    Text: Latest bill text (Introduced) [HTML]

New Mexico

  1. Senate Bill 260 – To Create a Childhood Cancer Awareness License Plate 
    Status: Introduced on January 21 2019 - 25% progression
    Action: 2019-02-12 - SCORC: Reported by committee with Do Pass recommendation
    Pending: Senate Finance Committee
    Text: Latest bill text (Introduced) [PDF]

  2. House Bill 264 Paid Family Medical Leave Act 
    Status: Introduced on January 17 2019  
    Action: 2019-01-17 - Sent to HCEDC - Referrals: HCEDC/HJC/HAFC 
    Pending: House Commerce & Economic Development Committee 
    Text: Latest bill text (Introduced) [PDF] 

New Mexico, CONTINUED:

3. Senate Bill 274 – To Create a Palliative Care Advisory Council 
Status: Introduced on January 21 2019 
Action: 2019-01-21 - Sent to SPAC - Referrals: SPAC/SFC 
Pending: Senate Public Affairs Committee 
Text: Latest bill text (Introduced) [PDF] 


NEW YORK

  1. Senate Bill 855:  To Create a Childhood Cancer License Plate 
    Status: Introduced on January 9 2019  
    Action: 2019-01-09 - REFERRED TO TRANSPORTATION 
    Pending: Senate Transportation Committee 
    Text: Latest bill text (Introduced) [HTML] 

  2. Senate Bill 719 – Relating to insurance coverage of in vitro fertilization and other fertility preservation treatments
    Status: Introduced on January 9 2019 
    Action: 2019-01-09 - REFERRED TO INSURANCE 
    Pending: Senate Insurance Committee 
    Text: Latest bill text (Introduced) [HTML] 

  3. Senate Bill 1493 - Provides that policies issued in this state shall provide coverage for standard fertility preservation services when a necessary cancer treatment may directly or indirectly cause iatrogenic infertility to a covered person. Status: Introduced on January 15 2019 
    Action: 2019-01-15 - REFERRED TO INSURANCE 
    Pending: Senate Insurance Committee 
    Text: Latest bill text (Introduced) [HTML]

  4. Assembly Bill 229 - Enacts the "VIP program"; establishes a virtual inclusion plan grant fund which will give grants to schools to implement technologies allowing for critically ill students to continue to maintain their studies while unable to attend class. Status: Introduced on January 9 2019 
    Action: 2019-01-09 - referred to education 
    Pending: Assembly Education Committee 
    Text: Latest bill text (Introduced) [HTML]

    ACTION ALERT: Write your Assemblyman

north dakota

Senate Bill 2233 - to create and enact a new section of the North Dakota Century Code, relating to health insurance coverage for infertility treatment.

Status: Introduced on January 11 2019 - 25% progression
Action: 2019-02-14 - Second reading, failed to pass, yeas 11 nays 35
Text: Latest bill text (Introduced) [PDF]

oregon

Senate Bill 132 - Requires health benefit plans pay for standard fertility preservation services for covered individual who will undergo medical treatment that is likely to result in iatrogenic infertility.

Status: Introduced on January 14 2019  
Action: 2019-01-15 - Referred to Health Care. 
Pending: Senate Health Care Committee 
Text: Latest bill text (Introduced) [PDF]

PENNSYLVANIA

House Bill 174 - An Act amending the Tax Reform Code of 1971, providing for pediatric cancer research tax credit.
Status: Introduced on January 28 2019 - 25% progression
Action: 2019-01-28 - Referred to FINANCE
Pending: House Finance Committee 
Text: Latest bill text (Introduced) [HTML]

Senate Bill 1275 - Enacts the Keystone educational grant, which establishes a virtual inclusion plan grant fund which will give grants to schools to implement technologies allowing for critically ill students to continue to maintain their studies while unable to attend class.
Text: Latest bill text

ACTION ALERT: Write your Assemblyman

utah

House Bill 65 – Creating a Special Group License Plate for Motorcycle Safety Awareness – would include pediatric cancer support. 
Status: Engrossed on February 12 2019 - 50% progression
Action: 2019-02-22 - House/ signed by Speaker/ sent for enrolling in Legislative Research and General Counsel / Enrolling
Text: Latest bill text (Introduced) [PDF] 


Legislative Web Pages for Fifty U.S. States and D.C.


State & Local Proclamations

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.

Thanks to the  Coalition Against Childhood Cancer (CAC2); the information below includes tips to help draft and promote a state or local Childhood Cancer Awareness Month proclamation.

What To Do

Contact Public Officials… before drafting a proclamation to designate September as Childhood Cancer Awareness Month in your area.  

Research current interests and support to emphasize prominent allies, local institutions, hospitals, clubs, Chambers of Commerce or authorities who can speak to the importance of such a proclamation.   If possible, try to engage someone who is passionate about our cause or try to generate passion for the issue as a result of your outreach. As you go through the process, continue to incorporate these partners in your effort.  Copy them on emails with the governmental office.  Solicit their ideas and contributions.  They will be much more likely to share in the pride of the accomplishment and distribute more widely. 

Remember that many public officials can issue a proclamation, including:  

  • Governors

  • Senators and Representatives

  • State Legislators

  • County/City Council Members

  • Mayors  

Lead Time

Since Childhood Cancer Month is in September – and since many legislatures and city governments are not in session during the summer months – 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.  The months of February through May is an ideal period to make your requests.

How to Request a Proclamation  

Two key methods:

  • Look on the website for the office, which often outlines the procedure you will need to follow.

  • Write a letter or send an email to initiate correspondence with an official’s communications office, and follow up with a phone call.

In either case, it is good to include an explanation for the critical need to observe Childhood Cancer Awareness Month, and when possible detail scheduled local activities, and discuss the importance of the office’s support for this annual event. Explain that it’s a simple way for the government to recognize the impact of the number one disease killer in the country.

Once the office confirms that the official might support Childhood Cancer Month and issue a proclamation, it’s time to start writing and supply them with the proclamation.  

Writing the Proclamation  

Two main styles are commonplace in today’s proclamations: traditional and modern.  

Traditional proclamations begin with a series of statements starting with the words “whereas,” which detail the current state of affairs and suggest the reasoning behind the proclamation. Each clause notes the problems or issues being addressed and is followed by a concluding phrase beginning with “therefore,” which specifically requests the support or action needed.  

Modern proclamations are written in a letter format. They highlight the same points as a traditional proclamation, but are written as statements. Samples of both formats are included at the end of this document.  

You can request a copy of a local proclamation from the mayor/government office. It may be helpful to review how others have drafted other proclamations or incorporated local information. 

Use the following checklist when drafting and submitting a proclamation:  

  • Determine the official’s preferred writing style (traditional or modern), examine other  
       proclamations by the office and cater to the style.

  • Offer a draft of your desired proclamation.

  • Insert local information or statistics that will resonate with community members. If any local press has been generated in the past year, include copies of the articles.

  • Follow up frequently to check the status of the proclamation.

Publicize the Proclamation

After the proclamation has been issued, publicizing it will bring more attention to an awareness campaign, and generate momentum for the national campaign locally. Be sure to send it into local newspapers with a letter-to-the-editor.  If you have an event, inquire to see if itcan be announced at city/county meetingsahead of time.  If possible, arrange for a press conference or town-hall meeting and have local officials sign or present the proclamation.

At times, the press event can be accompanied by a roundtable discussion on issues related to childhood cancer. panelists include medical professionals and service providers, families touched by childhood cancer, children currently in treatment, young adult survivors.

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.

Remember to let us at Children’s Cause know, so we can share with other organizations and coalitions.  Cumulative recognition across the country in this way speaks a very loud message of the national concern for this important issue.  

If you are denied a proclamation, always write a letter of gratitude for consideration. Set goals during the upcoming year to have influential persons in your area prepare letters of support for a proclamation for you to submit with next year’s request. These types of letters can communicate the level of awareness and concern in your area, which can pique an official’s interest. 

And if you need any help, be sure to let us know at info@childrenscause.org

SAMPLE LOCAL 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.

SAMPLE LETTER REQUESTING A PROCLAMATION: 

[Date]

Honorable [Name]

[Official Title]

[Mailing Address]

Dear [Name]:  

September is National Childhood Cancer Awareness Month. This month provides an excellent opportunity for our [City/County/State/School] to demonstrate its support in recognizing that childhood cancer touches the lives of those who live in our community. Of those diagnosed, approximately 20% of our children will die and 60% will survive challenged by life-altering conditions. Childhood cancer doesn’t discriminate by race, economic level, or region.  

Currently families in our area are struggling with this reality, with even more families providing aid and support for our families in need. We cannot ignore the #1 disease killer of our children. Recognition of this month is a wonderful opportunity to educate the public [or students] of the reality of childhood cancer and its impact on our children, our families, our community.  

[Your organization – or members of your community] would be honored if you would sponsor an official proclamation to recognize September as [City/County/State/School] National Childhood Cancer Awareness Month. Your proclamation would lend official recognition to the important work of educating the public, as well as emphasize your personal commitment to help support your constituency. I have enclosed a sample proclamation which may help your office compose the appropriate proclamation for our [City/County/State/School].

[Insert the following paragraph if you are sponsoring a public awareness event.]

[List of organizations] are sponsoring [describe event] on [day] at [time] at [location]. We hope you will attend this special event to present your proclamation. If you are unable to attend, we ask that you or your official representative read the proclamation to our supporters on [day of the event].  

If you, or your staff, have any questions concerning the request, the sample proclamation, or National Childhood Cancer Awareness Month, please call me at [telephone number]. I will follow-up with your office on this request in the next few days. As always, we appreciate your support for National Childhood Cancer Awareness Month and helping care for our children in need, to help them to survive, and help them to thrive throughout their lives. Thank you for consideration of this special request.

Sincerely,

[Name]

[Title]

Enclosure