Tonight's picture was taken in June of 2002. Mattie was two months old. I am not sure whose expression I love more. Peter, who looked peaceful and happy, or Mattie, who looked like he was taking in the world around him and pondering deep thoughts!
Quote of the day: It is 2019, and yet when you evaluate the cancer plans in all 50 States, only FIVE of them address childhood cancer. Of those 5, only TWO States have goals and objectives to meet the psychosocial needs of children with cancer. ~ Victoria Sardi-Brown
It has been the week of connecting with other cancer advocates from around the Country. Yesterday I spoke to an advocate in Seattle, today I spoke to an advocate in South Carolina and on Friday, my call will take me to Ohio. On each call, the focus is our Psychosocial Standards of Care. Today's advocate was looking for ways to get "childhood cancer" integrated into her State's plan. You maybe confused? Perhaps you are saying to yourself..... doesn't childhood cancer already exist in the plan?! Or is that State lucky enough not to have children with cancer???? Unfortunately the answer is NO! Even worse, childhood cancer is a topic not even covered in the majority of State Plans in our Country.
In 2017, I was asked to consult with the Virginia State Plan Cancer Control Committee. As Virginia was opening its plan for evaluation and an advocate contacted me about getting some psychosocial data so she could make a case for the inclusion of psychosocial care in the plan. Of course our goal is to get the Standards integrated into the Virginia Cancer Plan.
So what is a cancer plan? Comprehensive cancer control (CCC) plans identify how an organization or coalition addresses the burden of cancer in its geographic area. The plans are specific to each region and based on data collected about people living there. They take the strategies that have worked, either in that region or in a similar place, and make them into a blueprint for action. Plans are typically renewed every five years. The Centers for Disease Control and Prevention (CDC) fund states, territories, and Native American tribes to develop public-private coalitions or partnerships. These partnerships create the state plan and bring together interested and involved groups and individuals to maximize the use of existing resources and identify new resources to further their efforts.
When I started working with Virginia, I decided to do some digging around. Because I wanted to know what other States do! I found this fantastic database through the George Washington University that details cancer plans throughout the USA. From this database, I learned that 12 states include the word CHILDREN in their cancer plan. But that doesn't refer to children with cancer. Most of these 12 State Plans, are referring to children in the context of secondary smoke from adults and skin cancer prevention.
Only the states below focus on children with cancer. THAT'S FIVE STATES!!!! Out of those 5, only 2 (marked with an *) address psychosocial issues. SHOCKING, NO???
DC: Improve the policy and regulatory environment affecting access to pediatric and adult palliative care services in the District
NC: Enhance the early diagnosis, treatment, and quality of life for those individuals diagnosed with childhood cancer and their families
*NJ: To enhance the quality of life of the child, adolescent, and/or young adult patient with cancer from diagnosis through treatment to survivorship across the life span
- To foster the psychosocial health of the child with cancer and the family
- To improve care for adolescents and young adults diagnosed with cancer through encouraging participation in clinical trials
- To promote awareness of palliative care strategies for the child with cancer among healthcare professionals, patients, and families. Pain management can be used as an example of how these strategies can be implemented successfully
- To reduce/eliminate suffering and death due to childhood/adolescent cancers and to provide survivors and families the services needed to live meaningful and productive lives
TN: To reduce/eliminate suffering and death due to childhood/adolescent cancers and to provide survivors and families the services needed to live meaningful and productive lives
*WY: Foster the psychosocial and physical health of the child with cancer and the family
- Facilitate and monitor pediatric cancer needs in Wyoming
- Increase education related to appropriate end-of-life care for childhood cancer patients
The Databases:
https://smhs.gwu.edu/cancercontroltap/goalbank
https://www.cdc.gov/cancer/ncccp/ccc_plans.htm
Check out the link to the NJ state plan. Look at chapter 5 on children!
https://smhs.gwu.edu/cancercontroltap/content/foster-psychosocial-health-child-cancer-and-family
Check out the link to Wyoming's state plan. Particularly page 41:
https://smhs.gwu.edu/cancercontroltap/content/foster-psychosocial-and-physical-health-child-cancer-and-family
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