Focus Areas
Focus Areas
Accomplishments
Accomplishments
National level actions have resulted in:
The American Association for Cancer Research and the US FDA hosting a workshop in January 2025 entitled “To Test of Not – That is the Question: DPD Deficiency and Weighing Potential Harms”.
As a result, the FDA re-issued a Safety Alert to remind oncologists they should consider discussing with patients the possible benefits of pre-screening
Local actions have resulted in:
Ongoing Activities
Working with the media and professional organizations to raise awareness of the risk of 5-FU/Xeloda dosing of DPD deficient patients:
Sharing information on organizations and oncologists who are Leaders in Testing and laboratories that offer test services
Petitions to the National Comprehensive Cancer Network’s Colorectal Cancer Panel that have recommended pre-screening and dose adjustments for DPD deficient patients. The panel has yet to adopt our recommendations.
Connecting patients/family members with resources to make informed decisions about treatment or to turn tragedy into action that will lead to improved patient outcomes.
The following groups supported our position at the AACR/FDA Workshop on DPYD Testing (Jan 2025)
Collaboration
Collaboration
#FourthCause:
The American Society of Pharmacovigilance (ASP) officially announced the establishment of March 24th as National Adverse Drug Event Awareness Day, in a coordinated effort to help spark a national discussion over the ongoing tragedy and staggering healthcare costs directly related to adverse drug events (ADE), the fourth leading cause of death in the US. As part of its ongoing mission, ASP also launched a national awareness campaign to encourage victims of ADEs to share their stories and begin building community support, while urging healthcare professionals and organizations to talk about how they can champion medication safety.
AUDT is proud to participate in the #FourthCause initiative by sharing stories of our loved ones lost due to the lack of upfront DPD/DPYD testing prior to starting 5-FU or capecitabine. Our individual stories can be viewed here.
AUDT will support the National Adverse Drug Event Awareness Day annually on March 24th by encouraging our members to create public awareness in their local communities through the media and through family and friend participation in events such as walks or runs. Details to follow.
STRIPE – Standardizing Laboratory Practices in Pharmacogenomics:
We are proud to participate in the ASP’s STRIPE initiative. It is a continuing forum where public and private sector members work together to achieve common objectives and leverage collective opportunities to accelerate the development of precision medicine practices as a standard of care. With the standardization of pharmacogenomics testing as a goal, it will result in accurate and reliable information about a patient’s medication and drug-gene interactions. This standardization will ultimately have a direct effect on reducing the number of deaths from 5-FU and capecitabine.
For more information on these two initiatives, please visit the ASP website: https://www.stopadr.org/stripe
Legislation
Legislation
NJ Assembly Bill A986:
Requires physician to offer to test patients for dihydropyrimidine Dehydrogenase deficiency prior to undergoing chemotherapy
- https://www.njleg.state.nj.us/2020/Bills/A1000/986_R1.PDF
- Reported out of Assembly Health Committee with Amendments, and Referred to Assembly Appropriations Committee
NJ Senate Bill S179:
Requires physician to offer to test patients for dihydropyrimidine Dehydrogenase deficiency prior to undergoing chemotherapy
- https://www.njleg.state.nj.us/2020/Bills/S0500/179_I1.PDF
- Introduced in the Senate, Referred to Senate Health, Human Services and Senior Citizens Committee
NY Senate Bill S1462
Relates to dihydropyrimidine dehydrogenase deficiency testing
- https://legislation.nysenate.gov/pdf/bills/2021/S1462
- Referred to NY Senate Health Committee
