Justine Almada, stood outside Capitol Hill with her arms crossedThe executive director of the Anal Cancer Foundation, Justine Almada, recently traveled to Washington, D.C. to meet with legislators on Capitol Hill. Her mission was clear: to advocate for an HPV Cancer Awareness Campaign and secure more funding for anal cancer and the other cancers caused by HPV.

The Anal Cancer Foundation has been at the forefront of raising awareness about anal cancer and advocating for policies that help eradicate the disease. Over 90% of anal cancers are caused by HPV, a virus that nearly all people have in their lifetime. In addition, HPV causes precancer, recurrent respiratory papillomatosis in children, and at least five other cancers.

Nearly 10,000 anal cancer cases and 46,000 HPV cancers are diagnosed in the US annually — numbers that are increasing every year. Yet, despite this alarming statistic, there is still a lack of public awareness about these diseases and a lack of resources dedicated to fighting them.

Justine met with several members of Congress to discuss the need for an HPV Cancer Awareness Campaign. The focus of the meetings was to educate lawmakers about HPV and the cancers it causes—and ask congressional leaders to support robust funding for HPV prevention and awareness. The campaign would focus on raising awareness about the experience of HPV cancers, educating the public about the dangers of HPV, and promoting the importance of prevention through HPV vaccination and screening. Justine shared stories of patients who have battled anal cancer and the challenges they face in getting the care they need. She emphasized the importance of investing in funding that could eradicate the disease. ACF believes that an awareness campaign could make a significant impact by elevating the voices of people affected by HPV cancers, bringing more resources to the cause, and reducing the incidence of HPV cancer in the United States.

Congresswoman Kathy Castor of Florida will soon reintroduce the PREVENT HPV Cancers Act. This legislation would create a national awareness campaign, give states additional resources to improve their immunization information systems, and expand funding for the National Breast and Cervical Cancer Early Detection initiative. We encourage you to ask your member of Congress to support this bill and help us eliminate anal Cancer and the other conditions caused by HPV.

Group of people sat around a table in a board room wearing suits and smiling

Justine was joined by fellow advocates and people affected by HPV. They included anal cancer thriver and activist Marcia Cross and representatives from Moffit Cancer Center, Memorial Sloan Cancer Center, HPV Cancers Alliance, Recurrent Respiratory Papillomatosis Foundation, and CCAP Across the Map. A special thank you to the HPV Cancers Alliance for leading the organization of the day.

The meetings were productive, and the positive response from lawmakers heartened Justine. The foundation’s advocacy efforts are making a difference as more people become aware of the need to prioritize HPV cancer prevention and treatment.

The Anal Cancer Foundation will continue to advocate for action to fund an HPV Cancer Awareness Campaign, allocate more resources to fight the disease, and ensure that HPV cancer and anal cancer are recognized as priority health concerns.

Poster for Virtual Anal Cancer Patient Summit, Saturday October 1st 2022

The 2022 Virtual Anal Cancer Patient Summit is an opportunity for anal cancer advocates, patients, and caregivers to learn, connect, and be empowered!

Sessions will feature invited speakers: from oncologists to physical therapists, to thrivers who have faced anal cancer themselves. We look forward to bringing together the anal cancer community for a day dedicated to living and thriving with and after anal cancer.

Saturday, October 1st 2022.

Register here

More information to come.

 

 

Group of women at a conference smilingOn 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.

They gathered to discuss best practices in anal cancer prevention and treatment, presenting their research and specific clinic experiences. Anal cancer and pre-cancer data were also shared by Dr Ashish Deshmukh. His research showed that globally, non-Hispanic white women have the highest rise in new anal cancer diagnoses and that smoking is a significant player in anal cancer and precancer.

Anal cancer risk diagram

Throughout, many of the presentations focused on improving pre-cancer treatment guidelines and screening recommendations to catch as much cancer and precancer as early as possible. Because the timeframe from the development of HSIL (anal pre-cancer) to cancer is unknown, the experts stressed that screening should be initiated prior to age of cancer risk.

Attendees at anal cancer conference

In 2012, the Anal Cancer Foundation provided the seed grant to begin IANS, the first medical society dedicated to the prevention and treatment of anal pre-cancer and cancer. A decade later, IANS is growing and held its most recent annual meeting. ACF’s Justine Almada and Laura Lazar were in attendance. Ms. Almada was an invited speaker who gave remarks on how we can raise the game in our fight against anal cancer. We’ve summarized a few key presentations from the weekend, including the ANCHOR Trial results, new data on who is being diagnosed with anal cancer, and the powerful patient panel.

The ANCHOR Study 

Group of people at a conference smilingOne of the major highlights of the weekend was Dr. Joel Palefsky’s presentation on the groundbreaking ANCHOR study. Dr. Palefsky was introduced by his longtime colleague Dr. Naomi Jay, who pointed out that, “None of us [doctors, researchers, patient advocates, and thrivers] would be in this room today without Joel”. 

For a primer on ANCHOR, check out our past blogs!:

What did Dr. Palefsky share?

Check out our ANCHOR Study Q & A for all the details.

Patient Panel: Rare and Misunderstood

People listening to a speaker at a conferenceOn day 3 of the conference, a panel of brave and outspoken thrivers shared their experiences with the assembled medical experts. We dedicated an entirely separate blog post to their stories. Please check that out!

Merchandise with the IANS logo on

The entire weekend it was clear how passionate and dedicated all who joined were to ending the trauma caused by anal cancer and precancer. Doctors and researchers came to the ACF table to learn more about our peer support program so they could share this and other resources with their patients.

Anal Cancer Foundation stall at an event

We were so thrilled to be a part of this first meeting after three years! The commitment to changing the game, and momentum towards ending anal cancer and HPV-associated illnesses was inspirational to witness.

The groundbreaking ANCHOR study showed that early detection and treatment of anal HSIL (anal precancer) reduces cancer progression by 57%. Today, the study and results were published in the New England Journal of Medicine. The study was conceived by Anal Cancer Foundation scientific advisory board member Dr. Joel Palefsky, and supported through advocacy efforts by the Foundation.

WHAT IS THE ANCHOR STUDY?

The ANCHOR Study hoped to improve patient outcomes for people with anal precancer and cancer by finding the best way to stop anal precancer from progressing to cancer.

ANCHOR stands for Anal Cancer HSIL Outcomes Research and the study investigated if treating anal cancer precursor lesions reduced cancer risk for people living with HIV. The incidence of anal cancer is highest in people living with HIV which is why they were chosen for this study.

ANCHOR aimed to recruit 5,000 people living with HIV and randomized participants into two groups: a group who received treatment for anal precancer, and a control group.

WHO CONDUCTED ANCHOR?

ANCHOR occurred in 25 locations around the United States. It was conceived and led by Anal Cancer Foundation Scientific Advisory Board Member Dr. Joel Palefsky.

WHAT WAS ANCHOR RESEARCHING?

Prevention and early detection are essential to ending anal cancer. Yet, despite its growing incidence and mortality, there are no national screening guidelines for anal cancer or precancer. We know that rates of cervical cancer reduced by 80% once doctors started screening for, and treating, cervical precancer.

The hope was that the ANCHOR study would illustrate that treating anal precancer reduces the risk of anal cancer—and it has now done so!

The Anchor study had two main objectives: to determine the effectiveness of screening for and treating anal precancer to reduce the incidence of anal cancer in HIV-positive men and women, and to create a bank of blood, anal swab, and tissue specimens to support critical scientific studies on how anal cancer progresses.

There were two arms in the study: one arm that received treatment for anal precancer and a control arm that did not.

Ninety percent of anal cancer is caused by the human papillomavirus (HPV), which can cause changes to the skin around and inside the anus. These changes are called “high-grade squamous intraepithelial lesions” or HSIL. About half of HIV+ men who have sex with men have anal HSIL. The study discovered that nearly half of HIV+ women do as well. Not all anal HSIL will develop into cancer. Most HSIL will go away on its own, but some becomes cancer over time and can eventually spread to other parts of the body.

WHAT DID THEY LEARN?

Most importantly, the study found a 57% reduction of anal cancer in people whose precancer was treated.

As this was the first study of this size and purpose, the researchers sought to discover additional information about HSIL and anal cancer. Additional findings include:

  • A higher prevalence of HSIL than anticipated. This was most surprising in women. They were expecting 10% prevalence but found 47.2%.
  • The study diagnosed 17 people with cancer, which was higher than expected.
  • There was a younger median age at diagnosis than expected.
  • There was no real difference in age, race, or gender in those who progressed to cancer, but a large difference in cancer progression in smokers as compared to nonsmokers.

WHY DID THE STUDY LOOK AT TREATMENT SOLEY IN HIV-POSITIVE PEOPLE?

They are at the highest risk for anal HSIL and anal cancer.

WHY DID THEY STUDY HSIL TO PREVENT ANAL CANCER?

We know that treating cervical HSIL (precancer) is an effective way to reduce the risk of developing cervical cancer. Anal cancer and cervical cancer are similar enough that cervical is a good cancer prevention model to follow.

HOW DID THE STUDY WORK?

There were two arms: a treatment arm and a monitoring arm. In those randomly assigned to the treatment arm, when patients showed up with evidence of HSIL they were treated immediately with hyfrecation (burning off skin lesions), infrared coagulation (using infrared light as a heat source to cut off blood supply to internal hemorrhoids), fuorouracil (5-Fu) cream, or imiquimod cream. Whichever the provider chose, they had to follow a very specific treatment algorithm.

In the active monitoring arm, HSIL was monitored closely but with no treatment. The ultimate goal was to get rid of as much HSIL as possible.

WHAT ROLE DID ACF PLAY?

The Anal Cancer Foundation built and led the coalition of organizations that supported and pushed for the study. As part of its advocacy, ACF submitted testimony on behalf of the organizations in 2011 and 2012. At the time it was called the HOST study.

WHAT DOES THIS MEAN FOR THE ANAL CANCER COMMUNITY?

Anal cancer is rapidly increasing at 3% a year. More people are being diagnosed with late-stage anal cancer than ever before.

The study proved that treating anal precancer in people living with HIV, the group at highest risk for developing anal cancer, reduces their cancer risk. The researchers also found there is room for improvement in how we treat anal lesions and a great need for new medical training programs to address screening and early treatment. We need standard methods to find it early.

The Anal Cancer Foundation sees the ANCHOR trial as a critical step toward ending anal cancer. It is the first definitive evidence that early screening makes a difference. The next steps are ensuring screening becomes standard for people living with HIV, and focusing on how we can leverage these results to help people at risk for anal cancer who were not in the study population. It is also clear that we must support efforts to better train medical physicians to find and treat anal cancer before it ever becomes cancer.

HELP SUPPORT MORE PROGRESS LIKE ANCHOR

Treatment for anal cancer has long been neglected. We are changing the landscape with outcomes like the ANCHOR study. Please support our work.

We recently held the inaugural webinars in our 2022 Expert Hour webinar series: Clinical Trials 101 and Immunotherapy 101.

Dr. Lee Rosen of the University of California, Los Angeles, and Dr. Julius Strauss of the National Institutes of Health were the first two experts to hold informative and insightful sessions. We were thrilled at the quality and depth of information about anal cancer they each brought directly to the community.

We are so grateful for the time Drs. Rosen and Strauss put into their presentations and for taking the time to respond to audience questions and concerns with such kindness and clarity. This is our entire goal for this series: getting you the same information as your providers have. When you are empowered with knowledge, you can have more in-depth and productive conversations with your medical team and get the best care to suit your needs.

Clinical Trials 101Presentation slide about how to judge treatment success

March 18: Clinical Trials 101: Dr. Rosen guided us through myths and facts about clinical trials, provided questions to ask when considering a trial, and outlined how to frame clinical trials during the treatment journey.

Watch the Clinical Trials 101 replay.

Learn more about clinical trials for anal cancer.

Immunotherapy 101

Presentation slide entitled "Intro to Immunotherapy"

April 21: Immunotherapy 101: Dr. Strauss presented on the types of immunotherapies and how they work, what factors affect response to immunotherapy, potential side effects, and how to access immunotherapy clinical trials.

Watch the Immunotherapy 101 replay.

Learn more about immunotherapy for anal cancer.

After both presentations, we concluded with a robust Q & A. Audience members had their questions answered directly by each doctor.

Thank you to our experts and to our participants! We hope the first two sessions of this ongoing series have provided you with information and support. As we plan out future events please do not hesitate to let us know how we can better support you through our work!

At ACF we have been reflecting on what a year it’s been—and all the good that’s been happening, thanks to you.

Just this year, generous donors have made it possible for more than 800 anal cancer thrivers and caregivers to participate in our informational forums. These seminars allow cancer thrivers to overcome the enormous information gap that still exists. They support thrivers to become empowered, knowledgeable self-advocates on their treatment and recovery journeys.

I’d especially like you to meet Judy, who was diagnosed thirteen years ago with stage IIIB anal cancer. In September, she attended our anal cancer patient conference and had this to share about the experience:

“First-class conference with useful information and wonderful speakers. Networking was terrific. The biggest takeaway for me is that I have professional resources and people when I have questions and/or concerns, or am facing another set of rule-outs for a recurrence or new primary cancer.”

Judy is using the knowledge gleaned through the conference to help herself and is taking steps to help the next anal cancer thriver by serving as a mentor in our Peer-to-Peer Support Program.

Your investment in the anal cancer community is an investment in cancer thrivers like Judy. And I know, together we will:

  • Empower anal cancer thrivers with information and support
  • Accelerate treatment and prevention methods to end anal cancer and HPV
  • Engage the community to build the medical, scientific, and social infrastructure needed to end these cancers and support those who face them

To fund our patient support programs in 2022, we are launching a $50,000 end of year campaign. Patient services include the Peer-to-Peer Support Program and informational forums like the Anal Cancer Patient Conference. We hope you will consider making the Anal Cancer Foundation part of your year-end giving plan to ensure these programs continue to be supported.

The campaign will begin with Giving Tuesday on November 30 and run through December 31, 2021. Thanks to two generous families personally affected by anal cancer, the first $20,000 raised will be matched dollar-for-dollar. The match starts today for any person who would like to support the campaign early.

Together we’ll keep the good going until we end anal cancer and every person who faces it is given the information and support they need. Happy Thanksgiving and thank you for being part of this community.

With gratitude,

Justine Almada
Co-Founder

Text reading "Donate Now"

Text reading "Virtual Anal Cancer Patient Conference"On September 25th, 2021, the Anal Cancer Foundation held the first virtual Anal Cancer Patient Conference. Recordings of the day’s events are now available on YouTube.

Medical professionals spoke about anal cancer causes, treatments, and how to mitigate the various side effects of chemoradiation. We also heard from advocates who taught us, through sharing their own stories, how to use our personal experiences to advance the fight against anal cancer. Finally, thrivers were able to network both in groups and one-on-one which, for many people, was the first time they were meeting a fellow thriver. 

We created this event as an opportunity for anal cancer patients and caregivers to learn from medical professionals, connect with experts and each other, and take action to empower themselves and this community. 

Over 440 people registered for the conference from 20 countries around the world. Feedback from participants included that, “this is, without doubt, one of the finest virtual conferences I’ve ever attended, personal and professional — and I’ve attended a lot!,” “thank you for this conference. It provided me with a lot of information and more confidence to share my own story and help others become more aware of this disease,” and “superb conference – so informative and deeply touching! Really, thank you!” 

​Anal Cancer Foundation Co-Founder Justine Almada facilitated the day’s events. Experts including Drs. Joel Palefsky, Cathy Eng, Karyn Goodman, and Paul Romesser spoke about anal cancer causes, treatments, emerging therapies, and how to mitigate the various side effects of chemoradiation. Thrivers were given the opportunity to ask questions live, as well as to connect with one another. Anal Cancer Thriver and Activist Marcia Cross and Cervivor’s Tamika Felder shared their own stories, guiding the audience in how to use their personal experiences to advance the fight against anal cancer.

We would like to make sure every family facing anal cancer has access to the same information as their doctors. Please view the presentations, share with others, and send us any feedback you may have.  

Some suggested language for sharing on social media: 

The first #AnalCancer patient conference on September 25th was a day full of learning, connection, and advocating with @HPVAnalCancer. View the day’s presentations, from experts and thrivers alike, and help us keep the momentum going! 

On Sept 25th, I attended the first #AnalCancer patient conference with @HPVAnalCancer. I learned from experts in the field and connected with fellow thrivers. Now, you can too! Check out the videos from the day and help us #EndTheStigma!

Text reading "Take action"

Help support more community knowledge-sharing! Connect and act on behalf of yourself and the entire anal cancer community.

Comments? Questions? Please get in touch!

Flashback to Fall 2015, my mother, Monica Wray, was 57 years old and I was about to turn 26. I am an only child and as such my relationship with my mother reflected that. We were thick as thieves after successfully making it through my dramatic teenage years. On a seemingly routine trip to Target she told me that she had ben experiencing what felt like to her some rather embarrassing issues. Specifically, going to the bathroom. I reassured her that she was going to be okay. I didn’t know what else to say, what else was there to say? She explained she had scheduled a colonoscopy, something she also did religiously due to a history of anal and colon cancer in our family. Many tests later she was diagnosed with squamous cell carcinoma stage IIIB anal origin. Years before her diagnosis her older sister was also diagnosed with anal cancer and would not only survive but thrive. The difference for my mom? HPV. I sit here wondering what she would like me to share with you about her journey. Perhaps you’re on your own journey through cancer treatment, or are a caregiver yourself. I hope I am doing both her and you justice.

Woman sitting on a fallen tree

No one expects to have to take care of their parent while in their twenties. This certainly wasn’t how we intended of our lives to be. I remember frantically and daily, googling anything and everything about this diagnosis. There were no “what to do when you have anal cancer” pamphlets, no “save the booty” support groups. No one was selling support bracelets and there certainly weren’t commercials breaking up the evening news informing us, educating us. We were feeling around in the dark for information and understanding. Information we were getting from doctors treating her seemed vague and always left us with more questions. We were told to be thankful it wasn’t cervical because that prognosis was worse. Thankful? I wouldn’t use that word to describe how any of us felt. Her treatment was hard, an insurmountable number of setbacks.

Chemotherapy and radiation failed and the next resort was surgery. Memorial Sloan Kettering surgeons were tasked with removing her grapefruit sized tumor which would end up taking more than 15 hours. I recall sitting in the cavernous lobby trying to read a book to take my mind off of what was happening to my best friend. My mom’s truest fear during all of this was to go through the surgery and have it be unsuccessful. Its true the saying, “I wouldn’t wish this on my worst enemy”. I wouldn’t. I watched as my mother’s worst fear came true when were were told the cancer metastasized in her liver and lung. An immense chasm of loss welled up inside of me. I’m only 26 and I’m supposed to have so many more years with her. I was ready to help her clean her stoma and shop around for bathing suits that accommodated ostomy bags. I was ready to take care of her as she had taken care of me. There was supposed to be so much more time to learn about gardening, how to make perfect sausage soup, and watching B-rated horror movies. Cancer had a much different expectation and in September 2016 my mother passed away in my childhood home. My Aunt Catherine and I clung together and I can still feel the comforting hand from my Uncle George on my shoulder. My father played Frank Sinatra—I’m sure not just for her but also for us.

In the 4 years after her passing, of course so many things happened. I lost over 100 pounds knowing I needed to do everything in my power to put myself in a better place health-wise. I made new career choices and changed the way I thought about life as a whole. A week before my mother passed she told me she had regretted the amount of time she had dedicated to her career versus spending time with her family. She told me “do it, just do it all.” So I have been.

In early 2020 I really started hyper focusing on my frustration with the lack of information readily available to those diagnosed with HPV-related anal cancer. I know if we felt this way, we weren’t the only ones. So how do I help? Somewhere in 2018 I started hiking much more frequently. I find that being out in nature I could get my thoughts straight and calm my racing mind. This was how I could help. I decided I was going to dedicate hikes alongside a fundraiser for The HPV and Anal Cancer Foundation which was one of the beacons of information we found during my mothers treatment. My final push to start was my best-friend Anitas mother, Mary, also being diagnosed. So I have dedicated 58 hikes for my mother’s 58 years to raise funds to support those newly diagnosed, those still on their journey, thrivers, and their caregivers. I truly hope that every dollar we offer in support can go to eradicating HPV related cancers.

If you wish to, you can make a donation to support Sarah’s campaign.

Are you planning a fundraising event on behalf of the Foundation or thinking of how you could help #kickcancersass? We’d love to hear from you.

Lady standing in front of windows

 

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