‘Our mother Paulette could still be with us today if more prevention policies, screening tests and therapeutic options were available. Through awareness and prudent investments, we have figured out a path to dramatically decrease HPV-related cancer incidence in the coming decades.’
Justine Almada, Co-Founder
We can end 600,000 cancers now. Human papillomavirus (HPV) is a skin virus that causes 5% of cancers worldwide.
The HPV and Anal Cancer Foundation (ACF) is a groundbreaking donor-supported organization that is committed to a world without preventable cancer. Thanks to your support, we are ending preventable and stigmatized cancers associated with HPV.
The Foundation empowers anal cancer thrivers (our word for survivors) and accelerates prevention and research methods that eliminate anal cancer and the virus that causes the majority of cases, the carcinogen HPV.
Faced with the death of their mother, Justine, Tristan and Camille Almada – siblings in their early-to-mid-twenties decided to change the landscape of the disease to improve patient outcomes. They created an organization with a single focus: to accelerate the end of anal cancer and HPV for good.
The Foundation employs four key initiatives in the effort to achieve this aim: prevention through immunization and screening, building and investing in the scientific and medical infrastructure to find better cures, raising awareness and destigmatizing the disease and empowering thrivers with support and information.
The Foundation has pioneered new ways of approaching anal cancer and HPV-related cancer through an innovative and collaborative model. Among its accomplishments, it created the first scientific medical society and network for anal cancer, has created and led coalitions that represent diverse disease and medical groups to push for equal access to the cancer-preventing HPV vaccine, pioneered the very first educational forums for anal cancer thrivers, educated clinicians in large forums on the anal cancer experience and invested in novel scientific research on new treatments.
With your help, we are ending HPV and anal cancer with education, vaccination, screening, improved treatments and support for thrivers.
Read more details about our accomplishments below.
INCREASING ACCESS TO THE HPV VACCINE
The HPV vaccine is our first line of defense against HPV-associated malignancies, which cause 5% of the world’s cancers. In order to curb HPV-related cancer rates we must increase access to the vaccine for men and women. In the US, vaccination uptake is low. In the UK, females are routinely offered the vaccine, but males are not.
100% HPV protection for all boys and girls.
Work with key stakeholders in the government, medical field, nonprofits and the general public to guarantee vaccine coverage for all children.
- We have achieved government-recommended vaccination for all children in the US by working with stakeholders in the following advocacy initiatives. We:
- Testified before the FDA in support of expanding the Gardasil vaccine’s approval for anal cancer prevention for males and females. The FDA approved Gardasil for the prevention of anal cancer in December 2010.
- Formed and led a coalition of 12 organizations to submit multiple joint testimonies to the CDC’s Advisory Committee on Immunization Practices to provide males with the same access to the vaccine as females. In October 2011, the CDC voted in favor of routine HPV vaccination for males. The HPV vaccination is now recommended for all 12-13-year-old males and females.
- To increase vaccination uptake on a local level, we have:
- Testified at the New York City Council’s Committees on Health and Women’s Issues to support vaccination in youth on January 8th 2015.
- Worked with the New York City Department of Health and Mental Hygiene to strategize ways to educate the public about HPV, to increase vaccination among adolescents and to make sure that screening for anal cancer and precancer is occurring in high-risk populations.
- Worked with the NY Board of Education to ensure HPV and the vaccine was discussed in the sexual education program in schools.
- Presented at an HPV summit in Boston, MA in November 2014. The event was designed to address the HPV burden in the state and develop strategies to increase vaccination through education and awareness.
- Following success in the US, we are leading the effort to expand vaccination to males in the UK to reduce the health burden of HPV on all people.
- We co-founded a coalition of organizations called HPVAction, a collaborative partnership of 36 patient and professional organizations devoted to reducing the health burden of HPV.
- On 7th January 2015, the Foundation submitted a testimony to the UK’s Joint Committee on Vaccination and Immunisation (JCVI) in response to the Committee’s interim position statement and recommendation to offer the human papillomavirus (HPV) vaccine to men who have sex with men (MSM) aged 16-40 at GUM (sexual health clinics) and HIV clinics.
- In April 2015, Foundation co-founder, Tristan Almada, presented at the HPV symposium in London to discuss universal vaccination and its role in cancer prevention. This symposium serves as a platform for the leading organizations and clinicians dedicated to universal vaccination in the UK to come together to champion for the initiative.
IMPROVING SCREENING PROTOCOLS
There are no standardized screening protocols for non-gynecological HPV-associated cancers. In the case of anal cancer, because there are no screening protocols we are missing opportunities to find anal cancer before it becomes cancerous, when it is in the precancerous stages.
Have recommended screening protocols that are covered by insurance and routinely used by educated providers.
Work with medical and government agencies to improve clinical competency and screening guidelines.
- In 2012, we awarded a $50,000 grant to create the first anal cancer medical society. The Farrah Fawcett Foundation also co-supported this grant. The International Anal Neoplasia Society (IANS) brings scientists and clinicians together to discuss prevention, treatment, and novel therapies in forums dedicated exclusively to anal precancer and cancer. One current focus of the organization is to establish screening protocols for anal cancer. IANS held the first-ever scientific conference on anal cancer in 2013 and the second in 2015. At each scientific conference, the HPV and Anal Cancer Foundation facilitated the patient experience panels.
- The Foundation led a coalition of health advocacy groups to urge the National Institutes of Health to establish anal cancer screening and treatment methods by funding the first randomized controlled trials on finding and treating anal precancer. This $90 million ‘AnCHOR Study’ has started with a goal of creating evidence-based screening protocols for anal cancer.
RAISING AWARENESS AND DE-STIGMATIZING ANAL CANCER
Anal and HPV-related cancers are stigmatized. This prevents equitable conversation, resulting in less prevention, research and education and more isolation for patients.
Completely destigmatize anal cancer and HPV-related cancers.
Talk about the diseases, educate people on how common HPV is and gain support for individuals facing HPV-related diseases.
- Our partnership with Stand Up to Cancer resulted in a huge milestone for HPV and anal cancer awareness. Millions of people viewed the September 5th 2014 Stand Up to Cancer telecast and were provided with important information about the HPV vaccine as a life saving tool and its role in preventing anal cancer and other cancers caused by HPV.
- Caregiver Ellie de Nardo and friends did a nude charity calendar to raise awareness about anal cancer. The Behind Cancer Campaign sold hundreds of calendars and received robust media attention.
- The Foundation has been featured in publications including the New York Times, BBC News, the Independent, the Evening Standard, Sky News, Bloomberg, the Mirror, Reuters, the San Francisco Chronicle, and NBC’s Blog Health Goes Strong.
In 2013, the Foundation launched NOMAN Is An Island: Race to End HPV and Prevent 5% of Cancer. Events have raised over $1 million and spread the message of awareness about vaccination. Events include:
- Cosaveli Giro bike race: June 2015
- Barcelona – Ibiza Mediterranean Row: July 2015
- Ibiza – Barcelona Mediterranean Row: July 2015
- Cosaveli Tour bike race: August 2015
- Cosaveli Giro bike race: June 2014
- Barcelona – Ibiza row: July 2013
- Great Pacific Row June 2014 – August 2014 (a 50 day row from California – Hawaii, our 4 man team broke the world record for youngest crew to row the Pacific)
ADVANCING A CURE & IMPROVING TREATMENTS
There are no FDA approved drugs to treat anal cancer. Anal cancer treatment has not changed in the last 40 years. Treatments available for other HPV-related cancers have also not changed significantly. Researchers are not incentivized to invest in tools that benefit the entire field.
Cures for anal cancer and all HPV-related cancers. Develop safe, affordable, accessible and effective treatments for advanced anal cancer and HPV-related malignancies. We believe one drug, targeted at the HPV virus, could benefit all body parts affected by HPV.
Collaborate with governments, nonprofits and the medical community to shepherd innovative treatments from the lab to the doctor’s office.
Improving Therapeutic Treatments:
- Therapeutic Vaccines: In April 2014, we partnered with Stand Up to Cancer and the Farrah Fawcett Foundation to give a four-year $1.2 million research grant to scientists advancing a novel immunotherapy for HPV-related cancers. The goal of immunotherapy treatment is to use the body’s defenses to find and destroy cancerous cells without damaging healthy cells. This project’s aim is to discover new, targeted approaches to treat recurrent HPV-related anal, cervical and head and neck cancers. Ellis L. Reinherz, MD, co-director of the Cancer Vaccine Center at Dana-Farber Cancer Institute in Boston, MA, and Robert I. Haddad, MD, disease center leader for head and neck oncology at Dana-Farber lead the research project titled ‘Therapeutic CD8 vaccines against conserved E7 HPV epitopes identified by MS.’
- Broadening the options for patients: In fall 2014, we awarded MD Anderson Cancer Center and Dr. Cathy Eng a $40,000 grant to find better treatments for metastatic anal cancer patients. This research will look at immunotherapy alternatives to the current standard treatment that has been used for decades for metastatic anal cancer. Our funding supports biopsies for patients to participate in the trial and analysis of the tissue to understand how the drug is working.
- Understanding the pathogenesis of Anal Cancer: In May 2013, we supported an application to the National Cancer Institute (NCI) for University of Wisconsin researcher, Paul Lambert for a project to assess the role of HPV-related oncogenes, to identify the pathogenesis of anal cancer development, to evaluate genes and molecular pathways as potential therapeutic targets, and to further develop preclinical animal model studies of human anal cancer. The project was funded.
- Cell Line Prize: We will develop anal cancer cell lines to be used in biomedical research. Cell lines are necessary for drug testing and cancer research. There are currently no anal cancer cell lines. This is one of the first steps for clinical drug development – without them researchers are missing an important tool to develop a cure for HPV and anal cancer. This is greatly needed because there are currently no FDA approved drugs for treating anal cancer. We will offer five prizes at $20,000 each to be stored in a biobank for use by the entire scientific community.
- For more on our plan to find cures, see our Research Roadmap.
Medical Education and Collaboration:
- We provided the seed funding for IANS, the first anal cancer medical society. Before the society, there was no network or group of doctors to discuss anal cancer! The creation of IANS was essential for our goal to prevent and treat anal cancer.
- At the 2015 IANS Conference, we created a panel ‘The Person Beyond the Cancer’ in which three thriver panelists discussed their anal cancer experience and an oncologist, dietician and pelvic floor physical therapist addressed treatment and skills to manage the difficult side effects that result from treatment. This panel gave providers new insight on their patients’ experiences and tools to manage their side effects. At the 2013 IANS Conference, we facilitated a panel with individuals of anal cancer and HPV-related malignancies who shared their experience with the diagnosis.
- We participated in nine scientific conferences on chronic illness and their causes to learn about new trends in the field and share our exciting findings: HPV 2010, IPV 2011 & 2012, Partnering for Cures 2010-2014, IANS 2013 & 2015 and AACR 2014
Anal cancer is stigmatized and patients feel isolated to discuss their disease.
Empower thrivers. No patient should feel isolated.
Support thrivers through mentorship, community education and networking events.
- The isolation and stigma associated with anal cancer is unique, and few survivors ever meet or speak with someone else who has experienced the disease. The Foundation’s innovative Peer to Peer Support Program gives thrivers and caregivers a person to listen, offer support and share experiences. Sign up for the program here.
- We have pioneered an ongoing series of events specifically for anal cancer thrivers. We run and coordinate the first ever forums for survivors on the short- and long-term effects of anal cancer treatment. Through conversations with physicians and thrivers, we saw the gaps in treatment as well as what different hospitals were doing well and combined best practices into our educational forums. We have hosted the largest in-person gatherings of anal cancer thrivers worldwide.
- On June 23, 2015 we hosted the first online live event for anal cancer thrivers entitled Taking Care of You: Managing Side Effects from Treatment for Anal Cancer. The live YouTube session featured patients, providers and physical therapists with patients and caregivers from Hawaii to New York logging in to watch. The entire event, including the Q and A, is available here.
- In May 2014 in San Francisco, CA, we partnered with UCSF to co-sponsor the event Living and Thriving After Treatment for Anal Cancer: Addressing Long-Term Treatment Side Effects. You can watch the video here.
- In April 2014 in Houston, Texas, we partnered with the M.D. Anderson Cancer Center to sponsor a survivor meet and greet and had an awareness table at the SCOPE Colon Cancer Marathon.
- In October 2013 in NYC, we co-sponsored an event for survivors with Memorial Sloan Kettering Cancer Center called Addressing Long-Term Side Effects After Treatment for Anal Cancer, an educational meeting for anal cancer survivors. This was the first time many of the thrivers had met other people with anal cancer face to face. The slides from the event are available here and here and the notes are available here.
- In May 2012 in NYC, we partnered with GMHC and served as a panelist at a pioneering anal cancer forum, The Cancer That Dare Not Speak Its Name: A Community Discussion on anal precancer and cancer.
- Information regarding anal cancer, HPV and vaccination that is accurate and accessible has been lacking for decades. Recently we published a series of fact sheets to address these needs.
- Continuing in our tradition of keeping materials as medically sound as possible, the documents were reviewed by an oncologist, an infectious disease doctor and a nurse.
- We worked with the anal cancer community to create the colors for anal cancer – green and purple.
We provide resources for thrivers after treatment and a comprehensive list of financial resource organizations/partners in the US and UK for those undergoing HPV-related cancer treatments via www.analcancerfoundation.org.
- We have co-authored publications for the patient community such as ACRIA and GMHC’s journal Achieve and other patient literature.
- Kassie Samman, our Director of Patient Services and External Relations, presented our Peer-to-Peer Support Program and database at the Volunteer Management in Cancer Care (VMCC) symposium. Our program and database have unique traits to match participants with peers who have a similar cancer experience as well as a robust evaluation system.