Malecare
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| Formation | 1998 |
|---|---|
| Founder | Darryl Mitteldorf |
| Purpose | Prostate, testicular, and male breast cancer support for underserved male populations |
| Headquarters | New York City |
Region | Global |
| Methods | Online and in-person support groups, cancer patient advocacy, cancer research and medical care equity, patient-researcher engagement, mobile apps |
| Website | https://malecare.org/ |
Malecare is a (501)(c)(3) New York City-based non-profit organization that provides support and resources for patients and survivors of prostate, testicular, and male breast cancers. The organization focuses primarily on working with LGBT[1], African-American, and other vulnerable and underserved populations, including Indigenous Americans and Latinos.
The organization offers a variety of cancer support groups while addressing related patient advocacy needs, such as erectile dysfunction, anxiety, and monitoring of prostate health issues. Their work includes facilitating patient-researcher engagement[2], as well as research in the field of LGBT psycho-oncology. [3] Malecare is volunteer-based, and managed principally by psychologists and social workers.
Malecare's patient support and advocacy programs include a focus on increasing transparency regarding the risks and side effects from undergoing prostate cancer treatment.[4]
History[edit]
Malecare was started after social worker Darryl Mitteldorf, the founder organization’s founder, learned of his father’s prostate cancer diagnosis in 1997. This news prompted Mitteldorf to move back home to New York City to help care for his father. After realizing the sparsity of prostate cancer support groups in the city at that time, Darryl organized one himself at a local hospital in November 1997. Although he described the initial one as “useless” due to infrequent meetings and inadequate psychosocial support, Darryl continued hosting these groups while simultaneously modifying them in ways that he felt would increase their efficacy. Through his observations during this time, Mitteldorf developed what he believed was the ideal support group structure for men diagnosed with prostate cancer.[5]
Described as one of the original pioneers of LGBT psycho-oncology, Malecare founded the first prostate cancer support group for gay men in 1997 and the first transgender women with prostate cancer group in 2000.[6] Founder Darryl Mitteldorf continues to publicly advocate for better healthcare experiences for the LGBT population today.[7]
| Year | Event |
|---|---|
| 2004 | Created the first peer-to-peer cancer survivor dating website, CancerMatch.com, which reports 1.3 million users since 2005.[8] |
| 2005 | Founded the National LGBT Cancer Project and Out with Cancer to provide cancer survivor support to members of the LGBT community. |
| 2015 | Granted a patent for a medical device[9] for quality assurance of nuclear medicine for prostate cancer, involving radiation dose detectors embedded in clothing worn by the patient. |
| 2016 | Launched Cancergraph, a mobile app that enables users with any form of cancer to record and share their health information with their doctors to inform discussions about their treatment plan[10]. |
Patient Advocacy and Education[edit]
Malecare is engaged in patient advocacy and education efforts, speaking publicly on issues related to prostate cancer.[11] The organization is also heavily involved in helping connect patients with relevant clinical research trials and groups [12] [13] [14] [15], particularly those belonging to the LGBT community. Mr. Mitteldorf has emphasized the importance of including members of the LGBT community in these research trials because excluding them leads to less data regarding cancer mortality and prevalence in this population, which can have a negative impact on health outcomes for LGBT people overall.[16]
References[edit]
- ↑ "Malecare Inc - Company Profile and News". Bloomberg.com. Retrieved 2023-05-30.
- ↑ Hudson, David (March 14, 2019). "Gay and bisexual men wanted for prostate cancer research".
- ↑ Eves, Catherine (January 5, 2020). "Helping All of Us". Cancer Wellness.
- ↑ Brownlee, Shannon; Lenzer, Jeanne (October 5, 2011). "Can Cancer Ever Be Ignored?". The New York Times.
- ↑ Mitteldorf, Darryl (2018-06-01), Ussher, Jane; Perz, Janette; Rosser, B.R. Simon, eds., "Malecare: Twenty Years of Innovation and Service to Gay and Bisexual Men and Transgender Women with Prostate Cancer", Gay & Bisexual Men Living with Prostate Cancer, Harrington Park Press, pp. 86–98, doi:10.17312/harringtonparkpress/2018.06.gbmlpc.005 (inactive 2024-01-19), ISBN 978-1-939-59426-6, LCCN 2018002814, retrieved 2023-06-06 Unknown parameter
|s2cid=ignored (help) - ↑ Wolinsky, Howard (June 8, 2022). "She Found Out She Had Prostate Cancer". Medpage Today. Retrieved June 6, 2023.
- ↑ Krongrad, Arnon (2006-06-10). "Please Ask, Please Tell | Psychology Today". www.psychologytoday.com. Retrieved 2023-06-06.
- ↑ Willingham, Stacy (6 November 2018). "In Sickness and in Health: Dating Apps in the Cancer World". CURE. Fall Issue. 1.
- ↑ "USPTO Patent Full-Text and Image Database". United States Patent and Trademark Office.
- ↑ "Cancergraph: a desperately needed link between patient and clinical trial". Pharmaceutical Technology. 2017-03-31. Retrieved 2022-01-18.
- ↑ "New Cancer Data Spark Outcry From Patient Advocates". Medscape. Retrieved 2023-05-30.
- ↑ "When it comes to prostate cancer, 'gay men are erased,' patients say". NBC News. 2018-11-01. Retrieved 2023-05-30.
- ↑ University of Minnesota (2022-08-08). "Restore: Improving Sexual Outcomes of Gay and Bisexual Prostate Cancer Survivors". National Cancer Institute (NCI), Malecare.
- ↑ Simon Rosser, Br; Wright, Morgan; Hoefer, Chris J; Polter, Elizabeth J; Kohli, Nidhi; Wheldon, Christopher W; Haggart, Ryan; Talley, Kristine MC; Mitteldorf, Darryl; Kilian, Gunna; Konety, Badrinath R; Ross, Michael W; West, William (June 2022). "Recruiting an underserved, difficult to reach population into a cancer trial: Strategies from the Restore- 2 Rehabilitation Trial for gay and bisexual prostate cancer patients". Clinical Trials. 19 (3): 239–250. doi:10.1177/17407745221077678. ISSN 1740-7745. PMC 9232867 Check
|pmc=value (help). PMID 35232299 Check|pmid=value (help). - ↑ Rosser, BR Simon; Capistrant, Benjamin (2016-07-19). "Online Versus Telephone Methods to Recruit and Interview Older Gay and Bisexual Men Treated for Prostate Cancer: Findings from the Restore Study". JMIR Cancer. 2 (2): e9. doi:10.2196/cancer.5578. ISSN 2369-1999. PMC 5369633. PMID 28410183.
- ↑ "Confronting Cancer Health Disparities Due to Sexual Orientation and Gender Identity". ASCO Connection. 2017-08-30. Retrieved 2023-06-06.
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