HPV Cancer Resources

Helpful Information for Parents, Patients, Partners, and Providers

Helpful Information for Parents, Patients, Partners, and Providers

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HPV Cancer Support and Advocacy Groups

I’ve organized this information on patient HPV education and support groups, along with HPV vaccine advocacy organizations, several different ways to make it easier to sort through. You can search either by anatomical cancer site (e.g. head and neck cancers, or cervical cancer) or geographically by country. You should also look at my Resources for Patients and Caregivers page where you’ll learn how to find a healthcare advocate, the best ways to access medical journals, read about the experience of other patients, and learn what to do if you’re overcharged on your medical bills. Lots of really useful information!

By Anatomical Site

  • Head and Neck Cancers

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    These are by far the most common HPV-caused cancers in men. The majority of these are oral cavity cancers, or oropharyngeal cancers. FYI the oropharynx is defined as part of the throat at the back of the mouth behind the oral cavity. It includes the back third of the tongue, the soft palate, the side and back walls of the throat, and the tonsils. Basic information about these cancers can be found on the websites of the American Cancer Society, the American Society for Clinical Oncology, and the National Cancer Institute.

    The Oral Cancer Foundation, based in Newport Beach, CA is a non-profit group whose mission is to reduce the suffering and save lives of those with oral cancer through prevention, education, research, advocacy, and patient support activities. They have a patients support group and sponsor numerous events throughout the year.

    The Head and Neck Cancer Alliance is based out of Charleston, SC and has a plethora of information about these cancers and their treatments. The website also features survivor stories, nutritional advice, and resources for patients as well as patients and caregivers. They maintain a patient, survivor, and caregiver Patient HelpLine if you need a professional and objective ear. Counselors and resource specialists are available to connect you to helpful resources or offer advice. The HelpLine is available in English or Spanish, Monday through Friday from 9am – 9pm Eastern. A live chat is also available. Call (866)-916-5107.

    Support for People with Oral and Head & Neck Cancer (SPOHNC) is a US non profit group (with numerous local chapters) that is dedicated to raising awareness and meeting the needs of oral and head and neck cancer patients through its resources and publications.

    The website associated with Conquer: The Patient Voice magazine has featured stories about Head and Neck Cancer that you can access via that link. Conquer covers many types of cancer, not just head and neck cancer.

    Another good resource is the Throat Cancer Foundation - It’s based in Scotland and was founded by oropharyngeal cancer survivor Jamie Rae. Read about how they successfully forced the UK government to give the HPV vaccine to boys (they were already paying for the vaccine for girls) by threatening to sue the government for sex discrimination.

    Note: The criteria for defining the stages of oral cancers was changed in 2018 as part of the updating of the 8th edition of the cancer staging manual authored by the AJCC (American Joint Committee on Cancer). As a result, the staging of many of these cancer types was lowered. For example, what might have been characterized as a stage IV tumor a few years ago might now be characterized as a stage II or III tumor. You can read about this in this ASCO educational bulletin.

    The Swallows is a patient and caregivers head and neck cancer support group charity started in 2010 that’s based in the UK, but with branches located in other parts of the world (notably Australia and New Zealand). They have a support line available 24/7 in the UK (+44 7504 725 059). The Charity is run by patients, caregivers, family and friends, so everyone understands the problems associated with a diagnosis of head and neck cancer.

    Your Cancer Journey is a group based in Lancashire, UK. They share information about patients stories and host conferences specifically focused on head and neck cancers.

    The Mouth Cancer Foundation is a charity dedicated to helping and supporting those suffering from or at risk of mouth cancer, throat cancer, and other head and neck cancers, as well as providing assistance and information on living with mouth cancer for families, friends and carers. The cancers are not limited to those caused by HPV and includes those associated with smoking and alcohol consumption. Founded in 2004 and based in Surrey, England.

    The Head & Neck Cancer Society of Australia and New Zealand promotes quality care for cancer patients, organizes scientific meetings, and supports research on projects that are likely to improve the lives of patients.

    In 2018, there were major changes in the American Joint Committee on Cancer Eighth Edition Cancer Staging Manual related to HPV+ head and neck cancers. You can see the new staging criteria here. I also recommend you check out if interested this Powerpoint presentation about the changes to head and neck cancer staging.

    Finally, there was a review published in May, 2018 detailing New Therapies in Head and Neck Cancer, by Santuray et al Trends in Cancer, May 2018, Vol. 4, No. 5 https://doi.org/10.1016/j.trecan.2018.03.006
  • Gynecological Cancers (cervical, vuvlar, and vaginal)

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    Cervical cancer is by far much more common that the other two types of gynecological cancers caused by HPV. You can find info about causes and treatment of HPV-caused cervical cancer from the Fred Hutchinson Cancer Research Organization. You can also look at info from the American Cancer Society, the CDC, and the National Cancer Institute.

    Information about vaginal cancer can be found on the websites of the American Cancer Society, the Cleveland Clinic, and the National Cancer Institute.

    Information on vulvar cancer can be found on the websites of the American Cancer Society, the Foundation for Women’s Cancer, and the National Cancer Institute.

    The National Cervical Cancer Coalition (a program of the American Sexual Health Association) is a non-profit organization based out of North Carolina and focused mostly on cervical cancer. According to their website, they “help women, family members and caregivers battle the personal issues related to cervical cancer and HPV and to advocate for cervical health in all women by promoting prevention through education about early vaccination, Pap testing and HPV testing when recommended.” They have chapters located mostly across the southern and eastern US. They are partnered with Global Initiative Against HPV and Cervical Cancer, which works throughout the developing world to reduce the disease burden from HPV and cervical cancers.

    The Planned Parenthood website has info on HPV infections and the discussion is skewed towards gynecological cancers.

    The American Association of Retired Persons (AARP) also has a page focused on HPV infection and prevention.

    The US Department of Health and Human Services Office on Women’s Health has a page of FAQ focused on cervical cancer and HPV.

    Click on this link to get the WHO fact sheet on HPV and cervical cancer.

    You might be interesting in checking out Cervivor, a non-profit group that educates women about cervical cancer so they can be advocates in their communities. Contains individual stories about cervical cancer survivors.

    Jo’s Cervical Cancer Trust is a UK charity with an extensive FAQ about HPV, and as the name implies, is primarily focused on cervical cancer.
  • Penile Cancers

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    Information on cancer of the penis (most cases of which are caused by HPV) can be found on the websites of the American Cancer Society, the National Cancer Institute, the UK’s National Health Service, and Cancer Research UK.
  • Anal Cancers

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    The HPV and Anal Cancer Foundation - This UK based organization is a great source for basic information about the HPV virus. They provide a downloadable Anal Cancer Fact Sheet. This foundation also runs the NOMAN IS AN ISLAND program, which is a series of races that raise funds to end HPV and thereby prevent 5% of all cancers. You can also find information about anal cancer from the National Cancer Institute, the American Cancer Society, and the Mayo Clinic.

Geographically

  • United States

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    This section includes information specifically focused on helping patients with HPV-caused cancers, or advocating for immunization to prevent those cancers.

    HPV Immunization Education Project - a five year collaborative project between the National AHEC (Area Health Education Centers) office and the Centers for Disease Control & Prevention. The project is aimed at improving the national HPV immunization rates of 11 and 12 year old males and females through improved clinician training and understanding of the vaccine. They have posted a collection of Webinars that you can access online via this page.

    The Kaiser Family Health Foundation (which is independent of Kaiser Permanente) has also produced a useful fact sheet about the HPV vaccine.

    The National Foundation for Infectious Diseases has put forth a Call to Action for HPV Vaccination as a Public Health Priority.

    The American Academy of Pediatrics has put together an HPV Champion Toolkit

    The Centers for Disease Control and Prevention (the CDC) have developed a great resource for learning all about the virus, how it’s transmitted, and treatments. They’ve published a fact sheet for parents, which explains who should be vaccinated and when they should get the vaccine.

    The American Cancer Society has lot’s of information on their website about HPV-caused cancers.

    The Oral Cancer Foundation, based in Newport Beach, CA is a non-profit group whose mission is to reduce the suffering and save lives of those with oral cancer through prevention, education, research, advocacy, and patient support activities. They have a patients support group and sponsor numerous events throughout the year.

    The Head and Neck Cancer Alliance is based out of Charleston, SC and has a plethora of information about these cancers and their treatments. The website also features survivor stories, nutritional advice, and resources for patients as well as patients and caregivers.

    The website associated with Conquer: The Patient Voice magazine has featured stories about Head and Neck Cancer that you can access via that link. Conquer covers many types of cancer, not just head and neck cancer.

    The National HPV Vaccination Roundtable - established by the American Cancer Society (ACS) and the Centers for Disease Control and Prevention (CDC) in 2014, this is a national coalition of public organizations, private organizations, voluntary organizations, and invited individuals dedicated to reducing the incidence of and mortality from HPV cancers in the U.S., through coordinated leadership and strategic planning. The goal of the HPV Roundtable is to reduce the number of HPV cancers and cervical precancerous lesions as well as non-cancer outcomes through (1) increased frequency and strength of clinician recommendations for HPV vaccine, (2) decreased missed opportunities for HPV vaccine administration, and (3) increased HPV vaccination rates at national and states levels, with a focus on girls and boys ages 11-12.

    The HPV and Anal Cancer Foundation - This organization is based in both New York City as well as London. They are a great source for basic information about the HPV virus, and is not just focused on anal cancer. They have organized the NOMAN is an Island campaign, which organizes races to raise funds to defeat HPV. From their website “NOMAN aims to raise awareness about the HPV-related cancer epidemic in men and women, campaign for universal HPV vaccination, while challenging participants to extreme endurance races across the world.

    The Pathogen-Associated Malignancies Integrated Research Center at the Fred Hutchinson Cancer Research Center is focused on understanding how different bacteria and viruses (including HPV) cause human cancers.

    The University of Washington has a dedicated HPV Research Group that has conducted a variety of studies on both HPV itself as well as HPV-associated cancers.

    Information on vulvar cancer can be found on the websites of the American Cancer Society, the Foundation for Women’s Cancer, and the National Cancer Institute.

    The National Cervical Cancer Coalition (a program of the American Sexual Health Association) is a non-profit organization based out of North Carolina and focused mostly on cervical cancer. According to their website, they “help women, family members and caregivers battle the personal issues related to cervical cancer and HPV and to advocate for cervical health in all women by promoting prevention through education about early vaccination, Pap testing and HPV testing when recommended.” They have chapters located mostly across the southern and eastern US. The website includes info on where women can go for free or low-cost Pap tests.They are partnered with Global Initiative Against HPV and Cervical Cancer, which works throughout the developing world to reduce the disease burden from HPV and cervical cancers.

    The Planned Parenthood website has info on HPV infections and the discussion is skewed towards gynecological cancers.

    The American Association of Retired Persons (AARP) also has a page focused on HPV infection and prevention.

    The President’s Cancer Panel report (in 2018) HPV Vaccination for Cancer Prevention: Progress, Opportunities, and a Renewed Call to Action that has lots of information about US efforts to vaccinate both girls and boys against HPV. This report is a follow up to the 2012-2013 report Accelerating HPV Vaccine Uptake: Urgency for Action to Prevent Cancer.

  • United Kingdom

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    The Mouth Cancer Foundation is a charity dedicated to helping and supporting those suffering from or at risk of mouth cancer, throat cancer, and other head and neck cancers, as well as providing assistance and information on living with mouth cancer for families, friends and carers. The cancers are not limited to those caused by HPV and includes those associated with smoking and alcohol consumption. Founded in 2004 and based in Surrey, England.

    Cancer Research UK provides a fact sheet on HPV-caused cancers.

    Jo’s Cervical Cancer Trust is a UK charity with an extensive FAQ about HPV, and as the name implies, is primarily focused on cervical cancer.

    Throat Cancer Foundation - Based in Scotland and founded by oropharyngeal cancer survivor Jamie Rae. Read about how they successfully forced the UK to give the HPV vaccine to boys by threatening to sue the government for sex discrimination.

    The HPV and Anal Cancer Foundation - This UK based organization is a great source for basic information about the HPV virus. They provide a downloadable Anal Cancer Fact Sheet. This foundation also runs the NOMAN IS AN ISLAND program, which is a series of races that raise funds to end HPV and thereby prevent 5% of all cancers.

    Your Cancer Journey is a group based in Lancashire, UK. They share information about patients stories and host conferences specifically focused on head and neck cancers.

    Jabs for the Boys is a group (based in Warwickshire, UK) focused on getting the National Health Service to provide the HPV vaccine to boys (they currently only vaccinate girls). In 2018 their efforts were successful with a pledge from the government to start immunizing boys as well starting in the next few years. The organization is pushing to speed up that timeline.

    The Swallows is a patient and caregivers head and neck cancer support group charity started in 2010 that’s based in the UK, but with branches located in other parts of the world (notably Australia and New Zealand). They have a support line available 24/7 in the UK (+44 7504 725 059). The Charity is run by patients, caregivers, family and friends, so everyone understands the problems associated with a diagnosis of head and neck cancer.

    The HPV and Anal Cancer Foundation - This organization is based in both New York City as well as London. They are a great source for basic information about the HPV virus, and is not just focused on anal cancer. They have organized the NOMAN is an Island campaign, which organizes races to raise funds to defeat HPV. From their website “NOMAN aims to raise awareness about the HPV-related cancer epidemic in men and women, campaign for universal HPV vaccination, while challenging participants to extreme endurance races across the world.”

    HPV Action - This is an organization that advocates for the HPV vaccine and led the fight in the UK to get the vaccine given to boys. It currently has 51 member organizations; click here to see the list.
  • Canada

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    The Canadian government has information on the HPV virus as well as the vaccine on the Government website. The Canadian Women’s Health Network had info as well, but it is closing down. Your next best bet is to go the the website of the society of Obstetricians and Gynaecologists of Canada. They have a page with lots of info about the virus, the vaccine, signs of infection, prevention, and treatment.
  • Australia and New Zealand

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    The HPV New Zealand website offers information to the public as well as health care professionals about the virus and the vaccine.

    The New Zealand Ministry of Health also offers information about the virus as well as their free immunization program for those aged 9-26. So does the Immunisation Advisory Centre and the New Zealand Health Navigator website. You can also find info on the website of Seqirus, a company that sells the Gardasil 9 vaccine in NZ.

    The Head & Neck Cancer Society of Australia and New Zealand promotes quality care for cancer patients, organizes scientific meetings, and supports research on projects that are likely to improve the lives of patients.

    In Australia, the Cancer Council maintains a website with information about the virus and their vaccination program. You can also find similar info on the Australian Government Department of Health website. As a result of their aggressive vaccination program for girls, Australia may become the first country to eradicate HPV-caused cervical cancers (according to the International Papillomavirus Society). You can read more about this in In Australia, Cervical Cancer Could Soon Be Eliminated
  • Worldwide Organizations

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    The World Health Organization acts to educate people about HPV and the benefits of the vaccine. Click on this link to get the WHO fact sheet on HPV and cervical cancer.

    The Global Alliance for Vaccines and Immunization (GAVI Alliance, created in 2000) strongly supports widespread implementation of vaccines to the developing world (including the HPV vaccine). It provides a number of subsidized vaccines in the poorest countries, thanks in part to tiered pricing by the manufacturers that drastically cuts the cost of each dose.

    International Papillomavirus Society - The IPVS sponsors conferences and provides educational resources for the research and medical communities. Their initiative has designated March 4th as International HPV Awareness Day.

    The HPV Information Centre, which was put together by the Catalan Institute of Oncology (ICO) and the International Agency for Research on Cancer (IARC), offers a number of downloadable reports and monographs, webcasts, newsletters, and much more.