To: The House Committee on Oversight and Government Reform
Re: “Prostate Cancer: New Questions About Screening and Treatment”
March 4, 2010
We wish to thank the Committee for allowing us to present four important issues, on behalf of the thousands of men, their loved ones and their families, whom Malecare serves.
Founded in 1998, Malecare is our country’s first and leading Gay men’s cancer survivor support group and advocacy national nonprofit organization. All who work for Malecare are volunteers. Malecare publishes the worlds’ largest multi-lingual prostate cancer focused website, malecare.org and several online support groups. Malecare is noteworthy for facilitating the largest grass roots prostate cancer survivor advocacy effort in over ten years. The Petition to make Prostate Cancer a National Priority currently has over 16,300 signatures of Americans who ask this Committee to increase federal funding for prostate cancer research.
Malecare has four unique programs, focused on men diagnosed in their thirties and forties, African American men, Gay men and men diagnosed with advanced disease, relevant to the Committee’s discussion on prostate cancer screening and treatment.
Malecare’s ”Prostate Cancer under 50” is our country’s only psycho-social support program for men diagnosed in their thirties and forties. We’ve seen approximately 700 men benefit from our program, with more men enrolling every day. From our experience, we can suggest that men diagnosed in their thirties and forties are more likely to die from prostate cancer than men diagnosed later in later years. We ask the Committee to support promotion of prostate cancer information to all men from age 35 and up, during medical consultations.
Our New Dad program teaches patrenting skills to young African American experiencing their first child. Integrated in our parenting skills workshops and website is the need for early vigilance around health care. Mixed messages about screening and access to healthcare diminish our capacity to help young African American men find reason to ask about prostate cancer during personal medical consultations. We ask the Committee to support promotion of prostate cancer awareness in our African American community.
Malecare is our country’s only national nonprofit focused on psycho-social support for men with advanced and terminal stage prostate cancer. Advanced prostate cancer is not curable. Approximately 27,000 American men died from prostate cancer in 2009 and comparable numbers will continue to die, every year, until there is a durable, morbidity free treatment or cure.
End stage treatments present debilitating morbidity and degrees of hope measured in days, weeks and months. Often, men learn of drugs and treatment protocols that might help, but are not yet available as they wait for outcomes of clinical trials and FDA approval. We ask the Committee to work with the FDA to create a mechanism for early and compassionate access to investigational or yet to be approved drugs and treatment protocols.
Current debate seems to have shifted focus towards those who live with their disease rather than those men who die from their disease. We need to refocus our consideration of prostate cancer towards helping those most likely to die from prostate cancer. We ask the Committee to support increased funding and promotion for research into end stage treatment.
Approximately 10% of all American men diagnosed with prostate cancer are men who have sex with men. Malecare is our country’s only cancer survivor support and advocacy national nonprofit focused on gay and bisexual men, and transgender women. Prostate cancer presents unique and only recently understood psycho-social challenges for gay men. Unfortunately, we are still in the dark about the disparities of prostate cancer incidence and outcomes of homosexual and heterosexual men.
Approximately 800,000 men in the United States are HIV positive, and innovative therapies have dramatically improved survival. Prostate cancer is a common malignancy in HIV-positive men. With improved therapies for HIV and increasing survival, the importance for screening and treating prostate cancer is increasing.
In a 2004 paper, Dr. Crum and her colleagues concluded that HIV-positive men aged 60-70 years had a higher rate of cancer diagnosis compared to an age-matched US general population rate. Dr. Hessol and her colleagues recently found that a cohort of HIV positive men in San Francisco had a significantly higher incidence of prostate cancer than the general population. In New York City, at the February 11, 2009 Gay Men and Prostate Cancer forum sponsored by the American Cancer Society, 50% of the audience self disclosed that they were both HIV positive and diagnosed with prostate cancer.
Many HIV positive men are receiving testosterone replacement and are not adequately being screened. If HIV truly does represent a risk for prostate cancer, then more rigorous screening may be necessary among men who have sex with men as a whole, and especially in those on testosterone replacement therapy. We ask the Committee that all funding for prostate cancer research include stipulations that men who have sex with men be identified and considered as a unique and significant cohort.
We thank the Committee for its leadership and for providing the opportunity to present four critical issues in prostate cancer regarding men diagnosed in their thirties and forties, African American men, Gay men and men presenting with late stage disease.