Anal cancer is one of the fastest-growing cancers in the United States. We continue to work tirelessly to make life better for families facing anal cancer through our programs to raise awareness, accelerate early detection, improve quality of life, and advance a cure. This year, we made incredible progress raising awareness about the need to reform how anal cancer thrivers are diagnosed and treated. We also participated in several unique and exciting events designed to empower anal cancer thrives.
Thank you again for all of your support to save lives from this preventable disease and help our community thrive. We would not be here without you!
Improving Medical and Public Awareness to End Deaths from Anal Cancer
By deepening knowledge of anal cancer in the medical community and general public, as well as encouraging more anal cancer thrivers to share their stories, we are committed to turning anal cancer into a disease that people are equipped to talk about, invest in, and cure.
This year, the Foundation partnered with fierce advocate for the anal cancer community, actress Marcia Cross. Ms. Cross shared her experience in multiple media sources and platforms, making tremendous strides to educate the public about anal cancer and empower more anal cancer thrivers to share their stories.
Illustrating a milestone in the efforts to raise awareness about anal cancer on a larger stage, US Rep Kathy Castor and the Biden Cancer Initiative invited Foundation co-founder and Executive Director Justine Almada to the first congressional briefing on cancers caused by HPV. Justine and an anal cancer thriver shared patient stories and educated public health officials about the experience of having anal cancer. This is a highly significant landmark in public awareness, and we are pleased that the government is acknowledging the critical patient voices of the anal cancer community.
This year’s efforts to raise awareness about anal cancer in the medical and scientific communities included presentations at a number of conferences. These entailed events with the American Cancer Society, National Comprehensive Cancer Network, Atlantic Magazine, IANS, and representation at BIO 2019 and the National Organization for Rare Disorders.
To further public awareness, Executive Director Justine Almada and Patient Ambassador Lillian Kreppel were featured on Survivornet sharing their anal cancer experiences as a caregiver and thriver, respectively. We also hosted a Skate Your Butt Off! Party for the community in LA in May.
Peer to Peer Support Program
As always, we hope that you remember to take care of yourselves as thrivers, caregivers, and advocates. If you feel overwhelmed, reach out to us. The thriver community is here for you!
Our Peer to Peer Support Program, founded due to the lack of socioemotional resources for the anal cancer community, had its strongest year of growth yet! Applications were fueled by a supportive online community and thriver advocates. This year, we made over 75 thriver and caregiver connections. Many relationships created from prior years are still going strong, with over 500 matches made in the history of the program!
Despite gains being made every day, we continue to hear from thrivers about misdiagnosis, incorrect treatment, and poor explanation of one’s options by medical teams. This program is one way that the Foundation is working to combat these issues.
Learn more about our peer support program and sign up!
Advancing a Cure for Anal Cancer
IANS, the International Anal Neoplasia Medical Society created with a seed grant from the Foundation, held its fifth meeting since its inception in 2012, and its first in Europe. IANS creates medical guidelines and supports research essential to preventing and treating anal cancer.
Multiple IANS members published a pivotal study in the Journal of the National Cancer Institute in November 2019. This study showed that the rate of total new anal cancer diagnoses, advanced stage diagnosis, and mortality are all rising in the United States. In addition, the study illustrated that these rates are accelerating. As more people are being diagnosed with anal cancer than ever before, the Foundation remains committed to ensuring that families obtain the attention and resources that they need to fight their diagnosis.
ACF Work Recognized with Awards
The Foundation continues to receive awards for its leadership in the effort to end HPV and anal cancer. We were honored to receive national recognition with an award from the American Cancer Society’s National HPV Vaccination Roundtable. Executive Director Justine Almada also received an award for her leadership in the prevention and treatment of AIN and anal cancer at the international IANS meeting.
Global Vaccine Advocacy
Last summer, fifty-eight NOMEN took to the waves to end HPV – our largest fleet yet! Our program, the NOMAN Campaign, sponsors extreme endurance athletic challenges to raise awareness about the carcinogenic impact of the virus. NOMAN works with think tanks and public health agencies to increase HPV education and vaccine uptake through coalition-building, public education, and public health policy change. Read more in NOMAN's Year in Review.
Following our five-year advocacy campaign, boys in the UK began to receive the HPV vaccination this year. In the US, boys have been vaccinated alongside girls since 2011. Unfortunately, overall US vaccination rates remain low with just 40% of girls and 41% of boys completing vaccinations by the recommended age. The Foundation continues to lead efforts to provide all children protection against HPV.
Support our work
Please take a look at our Ways to Give page to learn more about this and other ways to support our work. We appreciate every single gift. 100% of contributions go to programs that raise awareness, accelerate early detection, improve quality of life, and accelerate a cure. None of this work would be possible without you.
Here is to more ground being broken in the coming years. Thank you for being on this journey with us, and thrive on!