Yes, Malecare helped write the ‘‘Comp... - Advanced Prostate...

Advanced Prostate Cancer

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Yes, Malecare helped write the ‘‘Comprehensive Cancer Survivorship Act’

Darryl profile image
DarrylPartner
7 Replies

I received several nice phone calls this morning, so I thought to share some good news and also highlight more of Malecare's brilliant work.

Working with the congressional office of U.S. Rep. Debbie Wasserman Schultz (FL-23) and several of my counterparts, I, representing Malecare and the prostate cancer community, helped write the ‘‘Comprehensive Cancer Survivorship Act’ which was introduced to the US Congress on December 14, 2022. Malecare was the only prostate cancer organization to date supporting this patient-focused Act, which might find oppostion from pharmacuetical companies, and thus negatively impact corporate donations. I very much hope that won't happen, but that won't cause us to back away from work that benefits our community.

Here is a link to the Act bit.ly/3Frp8ti

Here's a summary:

To address the health of cancer survivors and unmet needs that survivors face through the entire continuum of care from diagnosis through active treatment and posttreatment, in order to improve survivorship, treatment, transition to recovery and beyond, quality of life and palliative care, and long-term health outcomes, including developing a minimum standard of care for cancer survivorship, irrespective of the type of cancer, a survivor’s background, or forthcoming survivorship needs, and for other purposes.

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Darryl profile image
Darryl
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dadzone43 profile image
dadzone43

I THINK this is good news. The preamble is nice. But, scanning the 50 pages of the Bill I do not see what it proposes to do. Maybe a summary could be written.

Darryl profile image
DarrylPartner in reply to dadzone43

I’ll record an interview with the congresswoman after the holidays and will remember to get into specifics. Thanks

dadzone43 profile image
dadzone43 in reply to Darryl

Thanks back, Darryl. I hope you have splendid holidays.

SeattleDan profile image
SeattleDan

Personally I’d be curious to have more of a sense of how or why pharmaceutical companies MIGHT oppose it (I’m sure it would have something to do with being a presumed threat to corporate profit-making).

Darryl profile image
DarrylPartner in reply to SeattleDan

good inquiry. I will bring that up during the interview too. Thanks!

JRPnSD profile image
JRPnSD

I am forwarding this to our SWOG Patients Advocate Committee as well as our DEI Monitoring Committee. Thanks for the work you do.A summary would be greatly appreciated.

Darryl profile image
DarrylPartner

One of my counterparts wrote up a detailed summary, which I share with you, below:

·       Coverage of cancer care planning and coordination services: Establishes a Medicare service and payment for cancer care planning and coordination services to help improve care coordination and cancer survivors’ transition to primary care.·       

Survivorship transition tools: Requires the evaluation and publication of information resources for cancer patients and providers for consolidating treatment history and survivorship guidelines into a personalized survivorship care plan to guide follow-up care.·       

Alternative payment model: 

Requires the US Department of Health and Human Services (HHS) to conduct a study and submit a report outlining an alternative payment model for payment for items and services relating to survivorship care.·      

 Survivorship navigation: Requires review of navigation programs and submission of a report assessing how navigation programs can best be developed across the continuum of care. HHS must also conduct a demonstration program, awarding grants to eligible entities to provide navigation services to cancer survivors.·    

   Survivorship care demonstration program: Requires HHS to conduct a demonstration program aimed at improving the quality of cancer survivorship care, in which grants will be awarded to diverse demonstration sites and a variety of survivorship care strategies can be evaluated.·       

Cancer survivor workforce assistance grants: Requires the development of a grant program for eligible entities to provide education and targeted assistance, such as transportation, nutritional, and financial assistance, to cancer survivors and their families and caregivers who experience workforce challenges.·       

Comprehensive cancer survivorship program: Requires HHS to carry out a comprehensive cancer survivorship program that includes a cancer survivorship resource center to provide evidence-based resources to cancer survivors, a health care professional resource center to assist and educate health care professionals in the delivery of high-quality survivorship care, an educational campaign to provide health care professionals with resources to improve cancer survivorship care, and a program of supportive care services to improve survivors’ quality of life and long-term survivorship.·       

Adult cancer survivorship study: Requires HHS to complete an analysis assessing the creation of an adult version of the Childhood Cancer Survivor Study and the associated financial costs, as well as identifying data sources and gaps and strategies to publish data in a manner accessible to survivors, providers, researchers, and the public.·       

Survivorship progress report: Requires a study of the progress made in cancer survivorship over the last 50 years.·       

Promoting state innovations to ease transitions to the primary care setting for children with cancer: Requires HHS to convene a group of stakeholders representing childhood/adolescent cancer survivors to develop best practices for states to ease the transition of children and adolescents with cancer from active treatment to primary care and ensure development and delivery of survivorship care plans to these survivors.·     

  Childhood cancer demonstration model and standard of care: Creates a new Medicaid pediatric survivorship care demonstration model the Center for Medicare and Medicaid Innovation is encouraged to implement, which would promote a standard of care to manage the transition of children from active treatment to primary care through promotion and use of survivorship care plans.· 

      Medicaid coverage of fertility preservation services for cancer patients: Ensures Medicaid coverage of fertility preservation services for individuals diagnosed with cancer who undergo treatment that may lead to iatrogenic infertility.

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