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  WINDY CITY TIMES

National groups offer support to LGBT cancer survivors
by Charlsie Dewey
2014-08-06

This article shared 6053 times since Wed Aug 6, 2014
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Cancer does not discriminate, but the resources, support groups and research available to cancer patients and survivors often have.

As a result, in 1998 Malecare Inc., a nonprofit men's cancer survivor support and advocacy organization, was founded, with The National LGBT Cancer Project-Out With Cancer organization following in 2005.

Out with Cancer focuses on providing cancer survivor support to all members of the LGBT community, while The National LGBT Cancer Project serves as the organization's advocacy arm.

Darryl Mitteldorf, founder of Malecare Inc. and Out with Cancer co-founder, said though Malecare was a successful organization, it became clear that a support group focused on the entire LGBT community could accomplish more, particularly in the area of advocacy, than the many small individual support groups that had sprung up in communities across the country.

"We were concerned that there might be research opportunities that might be missed, particularly with clinical trials and psychological-social support research," Mitteldorf said.

He noted many of the psychological-social support issues cancer survivors experience are not gender or sexual identity specific.

Since their founding, Mitteldorf believes both Malecare and Out with Cancer, which he said was the first organization of its kind, has had an impact on helping the LGBT community gain the recognition of cancer researchers.

"We can identify peer reviewed articles, contemporary research, [including] National Institute of Health research, around gay and bisexual men and trans women cancer survivorship," he said. "LGBT research and LGBT specific research is still becoming prominent now."

He said in 2005 there were no narrative style articles about gay survivorship. He also noted when he first began attending the annual American Society of Clinical Oncology conference, which is held in Chicago each year, he suffered ramifications for displaying a poster focused on gay and bisexual men and prostate cancer research.

"My poster was ripped up and thrown to the ground," he said. "That person was thrown out, but that kind of thing existed."

He said Malecare and Out with Cancer also had a direct impact on the development of an entirely new field of study, gay psychosocial oncology.

Psychosocial oncology is a field of interdisciplinary study that looks at the psychological and social aspects of cancer on an individual. Gay psychosocial oncology focuses on the psychological and social aspects of a cancer diagnoses on LGBT individuals specifically.

"It's a very interesting and important thing that a couple hundred people now research, Mitteldorf said.

Cancer research that is inclusive of the LGBT community remains crucial, according to Mitteldorf, which is one of the reasons Malecare has launched StartACure.com, a crowdfunding website specifically focused on funding cancer research projects.

"Over the next year or two, we hope to be presenting with state-of-the- art style research projects from places like Harvard, Columbia, UCLA and others," he said. "We actually funded something recently at Johns Hopkins through that platform."

As far as providing support to LGBT cancer survivors, Out with Cancer has seen more than 153,000 members join since 2005.

The organization provides an online Facebook-style community and members have reached out to one another to form local meet up groups in their communities across the country.

"We also have collaborations with [other cancer-support] organizations," he said.

For example, Out with Cancer is currently partnering with Gilda's Club Chicago to provide training and support for a new facilitator.

Mitteldorf said at its heart the mission of Out with Cancer is to identify the unique issues the LGBT community faces around cancer survivorship, cancer treatment, cancer diagnoses and in relationships between patients and doctors when a patient is a LGBTQ identified person so it can provide much-needed support.


This article shared 6053 times since Wed Aug 6, 2014
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