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LOOKING BACK
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It has been four years since we founded the HPV Cancers Alliance. When our founders, Lillian Kreppel and Marcia Cross, talked to fellow anal cancer survivors, they were shocked to discover that many anal cancer patients had seen multiple doctors and been repeatedly misdiagnosed. Many patients had also not received the best treatment for this rare cancer. In addition, incidence of anal and head and neck cancers are rising, even though there is a vaccine that can eliminate HPV associated cancers. Our goal is to change all this!
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The HPV Cancers Alliance was founded to raise awareness about HPV associated cancers to the general public and also to the medical communities. We have met with gynecologists, gynecological physicians assistants, and nurses, to ensure that women not only get tests for HPV but also get correctly done Digital Anal Rectal Exams (DARE). Too many anal cancer patients have been told by their gynecologists that the anus is not part of their job. We want that to end! (No pun intended.)
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During the last year we continued to hold important programs and raise awareness by speaking to the media and at medical meetings and conferences. We also met with US Senators, Representatives, and the leadership of the Biden Cancer Moonshot Initiative at the White House to support important new legislation aimed at raising awareness and improving vaccination rates against HPV.
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Last year we doubled our number of mission partners. Twenty-four like-minded organizations and hospitals committed to HPV education from around the world have now joined our Medical Advisory Board and have dedicated their time and expertise to help make the HPV Cancers Alliance what it is today. And we’re just getting started!
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Please help us continue to spread knowledge and save lives.
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Amplify Your Donation
Workplace Grant Matching Helps Us Help Others
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Did you know that many employers will also match your donation? To find out if your company has a matching grant program, look for a matching grant program at your employer's intranet portal. If you don't see one: 1) Go to the Charity Navigator 2) Enter your Corporations Name under “See if your employer will match your donation!” 3) Click the button 4) Go to matching gift form 5) See guidelines
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You may also reach out directly to your human resources department. If your company uses a matching grant application where we are not yet registered, reach out to Executive Director, Lillian Kreppel at [email protected] for assistance.
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ADVOCACY ON CAPITOL HILL
November 15, 2023
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We traveled to Capitol Hill to advocate for eliminating HPV-related cancers in the US through increased adoption of vaccination, screening, and treatment.
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- We met with 16 senators and 6 members of Congress from both parties.
- We collaborated with President Biden's Cancer Moonshot Initiative.
- Members of our medical advisory board explained how HPV can be diagnosed earlier and prevented.
- Survivors we brought with us told their stories and emphasized how much more can be done to prevent and screen for HPV associated cancers.
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We were very happy to see how receptive congress was to our mission. Please watch our video of this initiative below.
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INTERVIEW WITH CATHY ENG MD, FACP, FASCO
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We are very grateful to Dr Cathy Eng for sitting down with us to answer some of the most common questions asked by anal cancer patients.
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Cathy Eng, MD, FACP, FASCO, is a Professor of Medicine in the Division of Hematology and Oncology, Department of Medicine and is the co-director of GI Oncology and co-leader of the Gastrointestinal Cancer Research Program at Vanderbilt University Medical Center. She moved from MD Anderson to the Vanderbilt-Ingram Cancer Center in 2019. Dr. Eng manages clinical trials involving innovative drugs for the treatment of anal cancers. Nationally, Dr. Eng has served in multiple leadership roles for ASCO, ASCO GI, ECOG, SWOG and the National Cancer Institute (NCI).
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KEY TAKE AWAYS
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The two most important pieces of advice Dr. Eng has for patients is
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- DO NOT INTERRUPT CHEMORADIATION TREATMENT to "take a break." Dr Eng emphasized that research repeatedly shows that people who interrupt their course of chemoradiation by more than one or two days are more likely to have an incomplete response to treatment or a local recurrence.
- GET A SECOND OPINION Dr Eng sees many patients who had previously been treated by doctors who lacked sufficient experience and knowledge in treating this rare cancer. Dr Eng emphasized that it is important patients look for second opinions from doctors with extensive experience treating anal cancer. Because it is a rare cancer, too frequently anal cancer patients receive inadequate medical care.
- Read More Takeaways Here
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HPVCA BOARD MEETING
October 2023
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We were excited to hold our third annual board meeting where our ever growing group of medical professionals discussed our plans for future events and outreach.
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ERIC KLEIN MD
Blood Test for Early Detection of Cancers
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We are grateful to Dr. Klein for coming to our Board Meeting and presenting his groundbreaking research on blood tests that detect multiple cancers.
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Distinguished Scientist at GRAIL Laboratories
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Emeritus Professor and Chair, Glickman Urological & Kidney Institute and Cleveland Clinic Lerner College of Medicine at Cleveland Clinic
Fellow, Distinguished Careers Institute, Stanford University
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KEY TAKEAWAYS
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Today patients are regularly screened for only 5 types of cancer. So, 70% of cancers detected are not screened for at all! At GRAIL, Dr. Klein is researching a Mutli-Cancer Early Detection (MCED) test that will screen for 50 types of cancer using a single blood sample collected at point-of-care.
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Cancer sheds DNA to the blood stream, and the MCED test looks for these very early signs of cancer. The hope is that regular screenings like mammograms willl not be necessary and that instead of today's multiple screenings for only 5 types of cancers, one blood test will detect 50 types of cancer. (Since colonoscopies are preventative, they, unfortunately, will still be necessary.)
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GRAIL's mission is to detect cancer early when it is more likely to be cured by using Galleri, a multi-cancer early detection (MCED) test, and ultimately to decrease cancer-related mortality.
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HPVCA IN THE NEWS
"Anal Cancer and HPV: A History of Awareness and Stigma. Interview with Lillian Kreppel"
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Executive Director, Lillian Kreppel, was interviewed by HPV World and described areas she believes need improvement in diagnosing and treating anal cancer.
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1) There needs to be better education around vaccination guidelines and improvements in screening. Many people are not aware that the HPV vaccine is available for adults in the US up to age 45. Even if someone has tested positive for HPV in the past, they may be a candidate for the vaccine.
2) Screening guidelines should be updated to recommend anal cancer preventive actions for all patients and especially for those who have ever tested positive for high-risk HPV, had an abnormal pap smear, or are post-menopausal. Incidence of both cervical and anal cancers is rising in older women as their immune systems naturally decline.
3) We need to ensure that gynecologists, physicians assistants, and nurses working in gynecological health know how to conduct a DARE(Digital Anal Rectal Exam). This involves more than sticking a finger inside the anus because there are folds, and they must know how to feel around the area. A tumor would feel like an induration. We need the gynecological care community to understand what is at stake and why better standards of care are so critical."
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Interview: American Sexual Health Association/National Cervical Cancer Coalition (ASHA)
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Listen to Lillian Kreppel address this important medical coalition. Lillian emphasizes that gynecologists should conduct a digital anal rectal exam(DARE) as part of a full pelvic exam, but many gynecologists still fail to do so.
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#SWHRtalksHPV: Vaccination for Cancer Prevention
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Lillian Kreppel participated in a forum advocating for increased vaccination against HPV to prevent cancer.
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Cancer Grace Webinar
Fall 2023
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Executive Director Lillian Kreppel participated in a question and answer session on an educational webinar about the myths and truths regarding HPV.
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American College of Gastroenterologists Feature Our Co-Founder Marcia Cross
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ACG Magazine' spring edition has placed Marcia Cross on their front cover and ran a major story about her advocacy for anal cancer patients.
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Going Viral: No One Should Die from Embarrassment "Discussions with Marcia Cross and Lillian Kreppel Activists, Fighters, and Anal Cancer Survivors"
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Our co-founders, Lillian Kreppel and Marcia Cross gave an extensive interview about anal cancer on the wonderful podcast "Going Viral". We recommend this interview, and also the whole podcast series!
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NYS HPV Vaccination Summit
Webinar
April 2024
Executive Director, Lillian Kreppel, spoke at this vaccination summit to raise awareness about the importance of preventing HPV associated cancers through vaccination.
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American Cancer Society National Meeting
HPV Roundtable
October 2023
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Executive Director, Lillian Kreppel, spoke at an ACS national meeting where there were many roundtable sessions focused on HPV. Breakout meetings addressed topics such as stigma, health equity, vaccination dosage, data, and clinical education.
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Global Patient Day at Merck
September 2023
We participated with other Patient Advocacy groups at the very first Merck Global Patient Day at Merck and raised awareness about HPV and its six associated cancers.
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What You Need to Know about HPV
September 2023
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We held an educational event for women over the age of 50 in New York City. We spoke to participants and distributed educational handouts that raise awareness of the six HPV related cancers. We emphasized that it's important for women to advocate for themselves and not let doctors dismiss them when they know something is wrong. We also encouraged everyone to get their children, grandchildren, nieces, nephews, and friends vaccinated.
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HPV NEWS
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Harald zur Hausen, Nobel Prize Winner Who Found Cause of Cervical Cancer, Dies
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Harald zu Hause was ridiculed when he first suggested that cervical cancer is caused by HPV. Today there is vaccine to prevent HPV associated cancers. More than 600,000 people develop an HPV-related cancer every year, according to the National Cancer Institute. Vaccination can prevent as many as 90 percent of those cancers.
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Study from Scotland Finds Zero Cases of Cervical Cancer in Women Vaccinated before Age 14
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Vaccinations against HPV work!
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Scotland has achieved a rate of zero cases of cervical cancer due to an excellent vaccination program. Scotland introduced routine immunization in schools in 2008, and close to 90% of students in their fourth year of secondary school (equivalent to 10th grade in the US) in the 2022-2023 school year had received at least one dose of the vaccine. In the US, where HPV vaccines are not administered in school, uptake among adolescents ages 13 to 17 is only a little over 60%.
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SPOTLIGHT ON CANCER HEROES
Rahul Mahadeven and WiTT
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We want to highlight the wonderful app WiTT (We Are In This Together) created by Rahul Mahadevan, a stage 3 prostate cancer patient. He understood that cancer patients are often too exhausted, overwhelmed, and, unfortunately, embarrassed to ask for the help they need. So he built a platform called WiTT that makes it easy and comfortable for cancer patients to ask for the assistance they need. Inspired by wedding gift registries, the platform asks patients to list all the practical and financial help they need, in a place where anyone who who wants to help can see the patient’s needs and select the specific assistance they can provide. For example, if a patient needs someone to go with them to radiation sessions, friends and family can see when and where the patient needs accompanying and sign up for that task. Donations for cancer patients can also be made, but unlike at GoFundMe, the full donation goes to the patient. WiTT is completely free for patients and their caregivers.
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On the backend of the app, Witt gathers anonymous aggragate data about the kinds of help different kinds of patients need so that cancer foundations and hospital social services can better serve their patients. For example, a prostate cancer foundation could learn from WiTT's data that many patients need help walking their dogs. Rahul hopes that cancer foundations can use WiTT to better tailor their assistance programs to patients’ needs. Rahul hopes to white label WiTT, to have organizations buy the license to WiTT, and offer it to patients from their foundation platforms.
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Watch the video below to learn more about Witt.
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AHCC
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We want to remind our readers about the important phase II trial that found that AHCC may help clear the high-risk HPV infection associated with six types of cancer. There has so far been no systemic way to help patients clear persistent HPV infections; however, the phase II clinical trial published here found that 64.3% of the women who had taken 3mg of AHCC on an empty stomach for six months cleared their HPV infection.
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AHCC seems to be a powerful way to boost our immune system. In fact, Executive Director, Lillian Kreppel, struggled with low white blood cell counts for a full year after her treatment for anal cancer. After taking AHCC, however, her white blood cell count returned to normal. We suspect this supplement, made by cell culturing a specific subspecies of mushroom identified by Japanese scientists several decades ago, may be a useful tool in our quest to strengthen our immune system. We also want to point out that radiation oncologist Dr. Paul Romesser, a member of our board, recommends that anal cancer patients wait till they are fully healed from radiation before taking AHCC.
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With so many fake supplements in the market, it is important to make sure to purchase only genuine AHCC®. When it is genuine AHCC® written in letters and followed by the trademark symbol.
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2023: Year In Review
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