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Home Other HPV Cancers Other HPV Cancers HPV and Anal Cancer Foundation

HPV and Anal Cancer Foundation

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“Every cancer patient deserves resources, support and hope, including those with anal cancer. Through The Foundation for HPV and Anal Cancer, we want to give other patients and their families the guidance, the information and the chance for saving a loved one’s life that we did not have.”

Anal cancer has been in the news over the past year, beginning with the actress Farrah Fawcett’s death from the disease in 2009 and, more recently, gaining exposure when the Food and Drug Administration (FDA) expanded the indication of Merck’s HPV vaccine, Gardasil, to include anal cancer prevention.

While anal cancer is not particularly common – the American Cancer Society estimates approximately 5,200 new cases annually – rates of the disease have been climbing in recent years. As with cervical cancer, almost all cases of anal cancer are linked with high-risk types of HPV. Unlike cervical cancer, though, anal cancer screenings are not common-place, and there’s even debate among experts about how effective anal Pap tests are in detecting and preventing the disease.

With any cancer, the impact is felt by both the patient and their family. Justine, Tristan and Camille Almada experienced this when their mother, Paulette Crowther, was diagnosed with advanced stage IV anal cancer in the spring of 2008. Despite juggling the demands of their own busy lives, the siblings were their mother’s primary care givers until her death in April 2010. Fueled in part by their frustration over the lack of resources and information available for anal cancer patients and their families, they established the non-profit Foundation for HPV and Anal Cancer shortly after their mother’s passing.

Tell us about your mother, and the experiences that led you to start your Foundation.
Justine, Tristan, and Camille: Mom was 51 when she was diagnosed, and we went through a two-year experience with her before she died in April 2010. We were a close family and remained with her at every step. As we were going through this with her, we became really frustrated that we struggled to find information about anal cancer and that the disease is perceived in a negative way.

We were very strong advocates while mom was alive and did a lot of research and we learned a great deal, so after she died we decided quickly that we needed to share what we learned with others. The question was, how do we do that? We decided to start an organization that focuses on anal cancer and HPV and that first is a place for people to go who are looking for information and support about the disease.

How do you find time to do this?
The three of us have full-time jobs and lives and we work on it in our free time, which is late into the night…it takes a lot of time, but this is something we’re really passionate about. We want to provide help, support and options to other families and survivors who are going through this, so that’s driving us and helps us find time.

Talk about what it was like to be a care-giver for your mom?
Seeing our mom suffer was an incredible challenge but we loved her so much, she was the most wonderful mother. On day one we fell into a routine where someone was with her at every single chemo appointment, every PET scan, and every radiation treatment. At the end in the hospital, she did a long stay and we were there every single night, at least one of us, sometimes all. We just lived on cafeteria food and hospital chairs and would stay up all night, but it was nothing compared to what she was going through. We were trying everything to help her get better and it was the least we could do for her being such a wonderful mom. Even though she did not survive despite our desperate attempts to save her, it brought us incredible pride to provide for her in every way we possibly could.

We hope through our foundation we can help other care-givers ease the burden a little bit. If there were better resources then the whole thing might have been easier for our family.

In December 2010 the FDA approved the anal cancer indication for Gardasil® (and prior to the advisory committee’s vote in November you made a public statement to the Committee in support of the indication). What impact do you think it will have?
The expanded indication is an important step in decreasing the number of people who will be diagnosed with anal cancer and increasing the profile and awareness of the disease. It’s important to note that the US has fallen behind other developed countries in terms of vaccine uptake, and hopefully this would help remedy that. There are many organizations beyond pharmaceutical companies that are looking at how we get higher inoculation rates with the vaccine, and the expanded indication will help. The next step is getting a recommendation from the Advisory Committee on Immunization Practices (ACIP), which is where we will focus our efforts in the coming months.

Also, we think there should be a focus on the “invisible man.” Men suffer from HPV-related cancers and diseases, so it’s important to promote that HPV can cause cancer in men in many anatomical sites, including the anus. We hope this leads to higher inoculation rates for both genders.

You mentioned several times being “Frustrated by the lack of support we received during mom’s treatment.” Talk about this: What kind of support was lacking? What did you need from healthcare providers and others?
There were two components: social support and healthcare support. With social support, we tried very hard to find support groups for mom, we tried to find places where she could go and feel comfortable talking about the disease and the stigma that’s associated with the disease, but there wasn’t anything available. In terms of the health care support, it can be difficult to find doctors who understand the disease and how to treat it. Our doctors were excellent, but they needed more tools, and a place to go to find out more about the disease. For example, it’s difficult today for oncologists and physicians to find out more about anal cancer and no society exists (as there are for many other diseases), so a doctor has to do research on their own. Since anal cancer is a disease that’s not common, they really are too few resources and part of the frustration came from that.

In addition to awareness and support, your mission includes funding for research into anal and other HPV-related cancers. How will you do this?
The drug development pipeline – for any HPV-related cancer- hasn’t seen movement for some time, and treatment options are limited. A key for us is how do we get the community, including pharmaceutical companies, excited again about drug development?

We are still assessing what the best deployment of funds might be, for example, is it a research grant or a post-doctorate fellowship? What we’re doing now is to map out all the resources available to us so that our money is effective when we do give grants. In looking at some other cancers where drug development was languishing, you can see the impact private foundations have had. One example is the Multiple Myeloma Research Foundation, which was started by a survivor and has raised over $100 million. They operate much like a drug development company, except they’re not for profit and the whole mission is to ask the right questions and to see where private money can help what some scientists call the “valley of death."

To get more therapeutic choices for patients battling advanced HPV-associated cancers, we need bold research. Perhaps this means a partnership where a non-profit organization such as ours, which isn’t concerned with a financial return on research and development, takes that step and attracts pharmaceutical capital.

Apart from what we may have already covered, what are your plans for 2011?
This disease has a terribly oppressive social stigma. Our mom felt it and we feel it; sometimes when we speak to people about it, it’s difficult for them to even say the words “anal cancer.” As you know, most anal cancers are caused by HPV, a disease that at least 75% of the sexually active population will have at some point, and it affects areas of the body that everybody has! We really hope that we can give those living with anal cancer the public support and community they need. That’s an important component and one of our first steps.