The Anal Cancer Foundation is starting yet another exciting year! With new partnerships forged and enlightening conversations with more experts in the anal cancer field, we feel as invigorated as ever for the new adventures 2023 will bring. If you missed it, please read about our advocacy push last month for the first national anal cancer screening guidelines.
Thanks to your support, we are thrilled to share with you the achievements of the previous year in the fight against anal cancer. As we look back on 2022, we are proud of the progress we made and the impact we have had improving outcomes for those affected by anal cancer and eliminating HPV.
Some of our notable accomplishments in 2022 include:
- The groundbreaking ANCHOR study and its results were published in The New England Journal of Medicine. For the first time, research showed that early detection and treatment of anal precancer reduces progression to cancer by 57%
- Hosting the second annual Anal Cancer Patient Summit (videos now available online!)
- Helping 1,100 patients find the information and support they need through our patient services programs
- Offering expert webinars for patients and caregivers, including Immunotherapy 101, Clinical trials 101, and Anal Cancer Detection and Prevention (recording coming soon!)
- Seeding the first-ever report on HPV Prevention in Europe
- Updating the first anal cancer clinical treatment guide that we created last year in partnership with 32 leading cancer centers
- Co-sponsoring the 7th International Anal Neoplasia Society conference, the medical society dedicated to the prevention and treatment of anal cancer
As we reflect on our advances in the past year, it is with deep sincerity that we honor those who we have lost in our community. In particular, we want to commemorate the work of Dianne Weber and Phyllis Weisband-Fibus. Long-time advocates in our community, they fought for better care for themselves and others. This year, they helped create the content for our immunotherapy and clinical trial webinars to ensure that the next advanced-stage cancer patient has more information than they had. For Dianne, Phyllis, Tamara, Kathy, George, and others, our hearts go out to the families of those who have passed this year, as we continue to fight in memory of their loved ones. We work daily toward a world in which anal cancer no longer exists.
As always, we thank you and all that you do. Your steadfast support has enabled us to continue improving the lives of those in our community and advance toward the end of anal cancer. To get more involved or make a gift to support our work, please contact us.
Please read our 2022 highlights to learn more about the immense progress that your support makes possible.
Early Diagnosis and Prevention Advancements
The ANCHOR study, an eight-year groundbreaking research study, was published in The New England Journal of Medicine in June. In late 2021, our collaborators at the ANCHOR study demonstrated that early detection of precancerous anal lesions reduces anal cancer risk in people living with HIV. In 2022 the full study was published, demonstrating that this reduction was as high as 57%, achieved through routine screening and removal of precancerous cells.
The Anal Cancer Foundation is proud to have led the coalition of organizations that advocated for this study at the NCI/NIH. The study was conceived by Anal Cancer Foundation Scientific Advisory Board member Dr. Joel Palefsky and supported through ACF’s efforts.
For a complete review of ANCHOR, its investigators, and what it found, learn more on our Q & A page!
Empowerment and Connection at the Anal Cancer Patient Summit
Building on the momentum from our incredible inaugural anal cancer patient conference, we hosted our second summit this October. Over 400 thrivers and professionals participated in the virtual event from all over the world.
Anal Cancer Foundation Co-Founder Justine Almada facilitated the day’s events which included the voices of anal cancer thrivers as well as experts including Drs. Joel Palefsky, Cathy Eng, and Paul Romesser speaking about anal cancer prevention, emerging therapies, and post-treatment care.
We also launched our RESET initiative! RESET provides anal cancer thrivers a roadmap to recovery after chemoradiation. Our goal is to arm every thriver (and their caregivers) with the knowledge and resources to move beyond their cancer.
RESET stands for:
- Relief from Pain (Featured Expert: Sana Shaikh, MD)
- Exercise the Pelvic Floor (Featured Expert: Dr. Allison Romero, DPT)
- Support from Professionals and Peers (Featured Experts: Judith Logue, PhD, Laura Lazar, MPH)
- Eating to Heal (Featured Expert: Rebecca Guterman, RD, CDN)
- Therapy for Sexual Health (Featured Expert: Lorraine Drapek, DNP FNP-BC AOCNP)
The conference presentations from both years are available on ACF’s YouTube page.
We can’t wait for year 3! Have ideas for content you would like included? Contact us to let us know!
Empowering You With Information
When you have the same information as your doctors, you are empowered to ask questions, get the answers you need, and play a more active part in your own care. To support you in these goals, 2022 saw the continuation of our Expert Hour webinar series, with physicians joining us for live events complete with audience Q&A.
Dr. Rosen of UCLA spoke about navigating the often confusing world of clinical trials. Dr. Strauss of the NIH discussed immunotherapy options for anal cancer treatment. Dr. Korman discussed anal cancer detection and prevention.
We are grateful to every expert who has joined us, and appreciate how they too understand the need for patients to fully understand the various milestones on their journey with cancer.
Watch each of these expert hour webinars and be on the lookout for our 2023 lineup!
An Update to Foundation-Supported Clinical Treatment Guidelines
In partnership with the NCCN, in 2021 we produced the first anal cancer treatment guidelines for patients — a user-friendly guide of national treatment protocols for anal cancer. This patient guide has been updated for 2022, again with input from the Anal Cancer Foundation.
ACF partnered with NCCN to translate its clinical guidelines into a comprehensive, patient-friendly format in order to provide patients and their caregivers with the same information as their doctors. The more individuals and families understand about anal cancer, its treatment, and side-effects, the better prepared they are to actively participate in their care and have meaningful conversations with their medical team about treatment and recovery.
NCCN is a coalition of the 32 leading cancer centers across the United States. They create standard treatment protocols for a range of cancers, including anal cancer.
Would you like a hard copy of the new guidelines? Please contact us to request a free copy in the mail!
The International Anal Neoplasia Society Convenes In-Person!
On June 3-5, researchers and medical professionals from all over the globe came together at the 2022 International Anal Neoplasia Society (IANS) Scientific Meeting In New York. The Foundation was a sponsor of the event.
They gathered to discuss best practices in anal cancer prevention and treatment, presenting their research and clinic experiences.
ANCHOR trial results were presented by Dr. Joel Palefsky of UCSF and Dr. Ashish Deshmunk presented research showing that globally, non-Hispanic white women have the highest rise in new anal cancer diagnoses. His data demonstrated that smoking is a significant player in anal cancer and precancer.
Meaningfully, a panel of brave thrivers stood in front of the room of experts to share their stories. In introducing the panel, Justine Almada put forward her and her siblings’ vision for ending anal cancer and called on everyone gathered to join together and RAISE their game.
Her call for RAISE means that we, collectively:
- Refer to comprehensive care, both during and after treatment
- Advocate for screening
- Invest in research for new treatments
- Stop the Stigma with connection and community
- Ensure early and accurate diagnosis
This was an important milestone for everyone because of the breakthrough research presented or the (joyful!) return to in-person gatherings that the event represented. 2022 marks the 10th year of IANS, the world’s first medical society dedicated to all things anal cancer—and the Anal Cancer Foundation helped make it possible.
The Impact You Helped Achieve This Year
Thanks to you, in 2022, ACF was able to directly serve 1,100 anal cancer patients and their families.
ACF’s impact includes:
- 130+ new anal cancer thrivers and caregivers signing up to be matched through
the Peer-to-Peer Support Program
- 250+ anal cancer thrivers and caregivers helped by the 1:1 Patient Navigation Service
- 25 thrivers sharing their story publicly with our community through our Share Your Story Initiative
- 650+ people participating in our informational forums
Overall, more than 1,100 anal cancer patients had access to our best-in-class patient programs, at no cost to them, and countless people will benefit from our advocacy, this year and for several years to come.
NOMAN funds help seed first-ever report on HPV Prevention in Europe
HPV causes 100,000 cancers a year in WHO Europe. Through the NOMAN Campaign Initiative, the Foundation is focused on extending to Europe the HPV cancer prevention milestones achieved in the US and UK. Through gender-neutral HPV vaccination and cervical cancer screening, we can prevent these cancers and become a world-leading example of how ambition and action combine to eliminate cancer.
The Foundation’s NOMAN Campaign is partners with the continent’s leading cancer medical society, the European Cancer Organization. Supported by a grant from NOMAN, the European Cancer Organisation’s Action Now on HPV project is advocating for effective vaccination and screening and identifying current policy, practice, and gaps in the delivery of HPV vaccination programs and screening across WHO Europe.
With the Foundation’s additional support, the Coalition published the first-ever report examining the state of HPV prevention across Europe: Putting HPV on the Map: The State of HPV Prevention Programmes in the WHO European Region. This data collection and analysis will inform our strategy to implement change in the region; identifying the countries in which we can support and encourage HPV advocacy, and in turn build towards the elimination of HPV-related diseases.
Further achievements from the NOMAN campaign included launching the UK HPV Coalition in England. The coalition calls upon the government to commit to eliminating all HPV cancers in the United Kingdom. The launch was hosted by Jess Phillips MP. The NOMAN Campaign will co-chair this new initiative alongside Jo’s Cervical Cancer Trust, the UK’s leading cervical cancer charity.
These incredible milestones, and everything else we were able to achieve this year is just another example of what your support makes possible. Thank you for being on this journey with us. Thrive on!