We just returned from California, which is the only place in the world that’s having a worse summer than England.
We met with thrivers (anal cancer patients) in Los Angeles and San Francisco. It felt so good to see the smiles on their faces when we told them what we are up to. We are saddened, but not surprised, to hear that many patients, like our mother, never interacted with another person affected by anal cancer. Fear of judgement due to behaviors many associate with the disease exacerbates the loneliness created by its relatively rare occurrence. Imagine being told you have a life threatening illness, but can’t talk to anyone about it because you’re afraid about what people might think. This is how many thrivers feel.
We toured the facility of UCSF’s Dr. Joel Palefsky, a champion of anal cancer in the research community whom we are absolutely thrilled to have on-board, and met with several other members of his team, including Dr. Michael Berry. We also sat down with the heads of the Prostate Cancer Foundation, Project Inform, StopAIDS, Walk With Sally, and had a phone call with the CEO of FasterCures. It is so encouraging how much these individuals believe in us and our ability to fulfill our mission—but they also reminded us that we will not be able to right myriad wrongs in the anal cancer world overnight.
We must focus in order to have success. Based on the information we have acquired from the patient and medical community, the patient isolation and clinician competence issues must come first. We can address patient isolation by, for example, setting up regular support groups mediated by trained professionals, having a peer-matching service where thrivers can help one another, and supporting the fledgling communities that already exist. We can address some of the clinician competence issues by providing platforms to disseminate the latest information on best practices and advocating for enforcement of existing screening and treatment guidelines. Too often, anal cancer patients are misdiagnosed and treated incorrectly by someone who does not have the sufficient training or has simply neglected to do basic procedures, such as the digital rectal exam.
At the end of this exciting and informative week, the Foundation filed to achieve its 501(c)(3) tax-exempt status with the IRS and registered with the New York State charities bureau! That means the Foundation can start soliciting donations while we wait for IRS approval, which we expect will be in place by the end of the year. Any donations made today will be tax-exempt once we receive IRS approval.
Please celebrate with us by showing your support!