The LGBT Cancer Project — Out With Cancer

The worlds first LGBT Cancer Meeting on Twitter will take place on July 9, 2009 from 12-1:30 PM EDT.  Facilitated by the United States based national nonprofit, Out With Cancer, the LGBT Cancer Meeting hopes to connect, educate and inspire Lesbian, Gay, Bisexual and Transgender cancer survivors and their supporters. ” @lgbtcancer now has 3,000 followers, which set a great opportunity for a twitter style  LGBT cancer survivor meeting,” said Out With Cancer Executive Director Darryl Mitteldorf, LCSW.  Out With Cancer is our country’s first LGBT cancer survivor support and advocacy nonprofit, and is a leader in using new technology to bring support to local and world-wide cancer survivors.  ”Some of our members have access to large, LGBT communities, but many are isolated, throughout the world. Out With Cancer uses Twitter and online support groups, like http://www.outwithcancer.org , in creating a global LGBT Cancer Survivor Community.  For more information, contact darryl@outwithcancer.com

Kristin Orbin and Teresa Rowe, partner of over 3 years, were participating in the Meet in the Middle for Equality march in Fresno, California on Saturday, May 30 when Orbin collapsed and suffered an epileptic seizure. After being rushed to Fresno Community Hospital and Medical Center, the couple alleges that hospital staff refused to allow Rowe the ability to visit Orbin in the emergency room, disregarded information from Rowe related to Orbin’s medical condition, and refused Rowe’s offer to fax to the hospital Orbin’s advance directive and power of attorney, which designated Rowe as Orbin’s surrogate decision maker. Our good friends at the Gay and Lesbian Medical Association are working with the couple and other groups to develop a response to these actions.

More information at www.examiner.com/x-4107-Gay–Lesbian-Issues-Examiner~y2009m6d2-EXCLUSIVE–California-lesbian-couple-allege-discrimination-at-Fresno-hospital.

Researchers at the Boston University School of Public Health want to interview gay men who have been treated for prostate cancer to learn more about their healthcare experiences. If you:

* Are an English-speaking gay man

* Age 50+

* Live in the United States

* Were treated for prostate cancer at least 12 months ago

Then we would love to hear about your experiences! All interviews will last approximately 60 minutes and are 100% anonymous and confidential. The results from this research study will be used to help educate prostate cancer patients and healthcare providers in the future. Your participation is voluntary. You can refuse to answer any question or stop the interview at any time.

If you would like to participate or obtain more information about this research study, please contact Don Allensworth-Davies at 617-638-5816.

You may obtain further information about your rights as a research subject by calling the Office of the Institutional Review Board of Boston University Medical Center at 617-638-7207.

Out With Cancer asks all Hospitals and Health Care facilities to carry out their commitment to quality patient care by adopting a comprehensive visitation policy that:

1.  Affirms all patients’ rights to have visitors;
2.  Includes same sex-partners and their children in its definition of family and does not restrict visitors to biological family members;
3.  Outlines a clear process for determining when visitors will be restricted and how that will be communicated; and 
4.  Includes a grievance procedure that can be acted on quickly in an emergency situation.

Approximately 2800 British women  are diagnosed with cervical cancer each year.  While it is second biggest killer of women in their thirties, Cervical cancer is one of the more preventable  cancers.  Early detection with cervical cancer  testing might save even more lives.

Cervical Cancer is a  significant risk for lesbian women.  Increased risk happens  around exposure to two particular strains of Human Papilloma Virus (HPV).  These two strains of HPV can be transmitted through sex between men and women as well as between women.  

A supplementary report for South Centralin the UK produced from the Stonewall survey in 2007 showed the following results for Portsmouth Primary Care:

•  56% of Lesbian/bisexual women had never been tested for STI’s or any other vaginal conditions.
•  21% had never had a smear test. 10% had not had a smear test in 10 years.
•  39% of women identifying as bisexual are having sexual intercourse with both men and women.
• 85% of total respondents report having had sexual intercourse with men at some point in their sexual history.

We should also consider the statistic suggesting that 54% of respondents who have had a negative experience of PCT healthcare involvoing  smear testing of lesbian and bisexual women.

Clearly, more education and testing opportunities would go a long way towards saving more lives in our Lesbian community.

GMHC supports increased funding for prevention and treatment of anal cancer among gay men.
Anal cancer is generally rare in the U.S. With a total of 4,650 cases per year, the rates of anal cancer in the general public averages two cases per 100,000.57 However, among MSM, the rates are 35/100,000 for HIV-negative MSM, and 80/100,000 for HIV-positive MSM.58
Gay men are 20 times more likely than the general population to get anal cancer,59 and HIV-positive men who have sex with men are up to 40 times more likely than the general population to develop anal cancer.60 Both anal cancer and cervical cancer are caused by strains of the human papilloma virus (HPV). The rates of cervical cancer used to be about 35/100,000 before pap smears, and dropped to 4/100,000 once pap smears became routine. Anal pap smears should also be made widely available to men. The FDA approved Gardasil as a vaccine against HPV in girls and women age 9 through 26. GMHC urges the FDA to trial and, if appropriate, approve Gardasil for use with boys and men to reduce anal cancer rates among gay men.

Malecare, our country’s national Gay Men’s Cancer Survivor nonprofit, has been active in this mission since 1999.  For more information, contact: info@malecare.com

57 Alan Nyitray. “Anal Cancer and Human Papilloma viruses in the U.S. in heterosexual men.” Current Oncology. October 2008.

58 Misty Bath and Sonja Rietkerk. “Proactive Anal Pap testing for the HIV positive MSM population in the IDC.” Powerpoint Slide Show presentation. http://www.catie.ca/pdf/CANAC/2007/Rietkerk-ProactiveAnalPaptesting.pdf Accessed: February 18, 2009.

59 Ibid. pg. 4.

60 Cranston, Ross D. et al. “The prevalence, and predictive value, of abnormal anal cytology to diagnose anal dysplasia in a population

Below is an action alert, from the Gay and Lesbian Medical Association.  We at Out With Cancer are as appalled as the GLMA, and we endorse this notice.

Janice Langbehn and Lisa Pond, together 18 years, were about to depart from Miami on a family cruise with their three children, when Lisa suddenly collapsed. From the moment Janice and the children arrived atJackson Memorial Hospital, they encountered prejudice and apathy. The hospital refused to accept information from Janice regarding Lisa’s medical history, informing her that she was in an antigay city and state and that she could expect to receive no information or acknowledgment as family. A doctor finally spoke with Janice, telling her that there was no chance of recovery. Despite the doctor’s acknowledgment that no medical reason existed to prevent visitation — and despite the fact that Janice held a durable healthcare power of attorney for Lisa – hospital staff refused to allow Janice or the couple’s children to see Lisa until nearly eight hours after their arrival. 

Lambda Legal has filed a lawsuit against JacksonMemorial Hospital, on behalf of Janice Langbehn and her three children. In its response to the lawsuit, the hospital does not dispute Janice’s account of what happened that night. Instead, they claim they did nothing wrong.

 Jackson Memorial Hospital’s position – as reflected in black in white and in public documents – is that [1]:

“Defendants owe no legal duty to provide attention to patients’ family members or other visitors.”

“There is nothing within the advance directives statute that would have required doctors or nurses to speak to Ms. Langbehn other than to seek consent regarding a medical procedure that required consent.”

“There is no duty (regardless of a fiduciary relationship) to provide information or visitation to a patient’s visitors.” 

As reflected in the legal documents, Jackson Memorial Hospital believes that: (1) they have no obligation to allow their patients visitors; (2) they do not have to allow a healthcare surrogate to actually see the patient on whose behalf they are making healthcare decisions; and (3) that their doctors do not have to share any “particular amount of information” with family members.

 The Gay and Lesbian Medical Association (GLMA) is appalled by the hospital’s positions and has established the Committee for Fair Visitation at Jackson Memorial Hospital to ensure that what happened to Lisa and her family doesn’t continue to happen to other patients at Jackson Memorial.

 We are calling on the hospital to carry out its commitment to quality patient care by adopting a comprehensive visitation policy that: affirms all patients’ rights to have visitors; includes same sex-partners and their children in its definition of family and/or does not restrict visitors to biological family members; outlines a clear process for determining when visitors will be restricted and how that will be communicated; and includes a grievance procedure that can be acted on quickly in an emergency situation.

Out With Cancer will publish updates on this.

Our Appropriations Request Is Moving!! Ask Your Senator to Sign On in Support of an LGBT Question on the National Health Interview Survey

 A few weeks ago, Out With Cancer asked for your support in calling your Representatives.

 Thanks to your efforts, 46 Representatives supported the addition of an LGBT question to the National Health Interview Survey (NHIS). Now Senator Whitehouse (D-RI) is leading the charge in the Senate to rally support for appropriating the $2 million necessary to add this question. The Senator has begun circulating a sign-on “Dear Colleague” letter in the Senate to show support for adding $2 million in increased funding to the budget for the National Center for Health Statistics, which will pay all costs associated with adding a question about sexual orientation and gender identity to NHIS.

 This survey helps set the federal government’s priorities in funding health programs, so gathering data on LGBT demographics is vital for demonstrating the importance of LGBT health concerns and pushing for increased funding for services for the LGBT community.

 This will help us learn more about the health and psycho-social treatment needs of

Lesbian, Gay, Bisexual and Transgender people diagnosed with cancer. Contact your Senator today to ask them to sign onto the Whitehouse Letter in the Senate.

 To contact your Senator, please call the Senate switchboard at (202) 224-3121, tell them your state, and ask to speak to your Senator. When you are connected to your Senator’s office, ask for the staff member who works on Health and Human Services appropriations. Tell them that you are a constituent who supports appropriating an additional $2 million for the National Health Interview Survey and that you would like them to sign on. In order to sign on, they need to contact Jordanna Davis in Senator Whitehouse’s office by close of business on Friday,  May 1.

Mazzoni LGBT health center in Philadelphia received it’s fourth annual Komen Grant. Mazzoni Center executive director Nurit Shein said the grant will allow the facility to continue its efforts to promote breast health in the local lesbian, bisexual and heterosexual communities. Mazzoni has received the grant for the past four years. 

“This allows us to do clinical breast exams and referrals for mammography for women who don’t have insurance,” Shein said, adding the funding also will assist the center in producing its Lesbian Health Resource Guide.