LGBT Cancer Survivors' Voices Spotlight Cracks in Health CarE SYSTEM

The National LGBT Cancer Network released a new report today that uses the direct experiences of cancer survivors to paint a stark picture of the effect of discrimination on LGBT health. The free, downloadable booklet, “LGBT Patient Centered Outcomes,” uses the findings to suggest practical recommendations for improving health care for LGBT people.

“When we asked cancer survivors to tell us what they wanted health care providers to know, we were saddened, angered and moved by many of their stories; cancer is enough of a burden, no one should have to endure the discrimination, alienation, and, in some cases, less than adequate care because of who they are,” said Liz Margolies, Executive Director of the National LGBT Cancer Network. “For many of  the survey respondents, cancer treatment is both the same, and scarier.”

Go to the sites below to access this report and full article.

The National LGBT Cancer Network works to improve the lives of LGBT cancer survivors and those at risk by: educating the LGBT community about our increased cancer risks and the importance of screening and early detection; training health care providers to offer more culturally-competent, safe and welcoming care; and advocating for LGBT survivors in mainstream cancer organizations, the media and research. For more information, visit http://www.cancer-network.org.

The Network for LGBT Health Equity is a community-driven network of advocates and professionals looking to enhance LGBT health by eliminating tobacco use and other health disparities by linking people and information. The Network is a project of The Fenway Institute in Boston. The Fenway Institute at Fenway Health is an interdisciplinary center for research, training, education and policy development focusing on national and international health issues. For more information visit http://lgbthealthequity.wordpress.com/ and fenwayhealth.org.

 

Reposted at http://www.keystothecloset.blogspot.com,

 

'Everyone' Doesn't Always Mean Me

Liz Margolies, L.C.S.W.
Clinical psychotherapist; founder and executive director, National LGBT Cancer Network, Posted: 03/ 7/2012 8:06 pm

As the executive director of the National LGBT Cancer Network, my work is all about LGBT cancer survivors and those at risk. In the vast, multi-million dollar world of pink and teal ribbons, cancer organizations and foundations, we are nearly alone in this focus. I often interact with these mainstream groups, and when I do, I bring up the underserved and invisible LGBT community. "Oh, don't worry," they always say in that reassuring voice. "Our organization and our services are meant for everyone."

Really? In almost every instance, the flyer, the event, or the webpage for "everyone" doesn't include me.

If they write about cancer risks, there is no mention of the increased cancer risks of LGBT people. If they speak about screening or early detection, there is no mention of the additional difficulties LGBT people face, including discrimination and lower rates of health insurance. If they offer referrals for support groups, they rarely have one for LGBT survivors or caregivers. Most articles on of the impact of cancer treatment on sexuality assume that all of us are heterosexual. I am tired of feeling grateful for the information they do provide.

Let's try this test ourselves now. Imagine that I'm a lesbian whose partner was just diagnosed with lung cancer (remember that LGBT people use tobacco at nearly twice the national rate). I go to the Internet for information and support. Google's first suggestion is the National Lung Cancer Partnership. Their tag line is "Research, Awareness, Change." Sounds good so far. I click through to the website and type the word "lesbian" in the search box. What do I find? "No results matched your query." No, "everyone with lung cancer" does not include me.

Or let's imagine I am a transgender man looking to find a free, safe, and respectful place to receive a cervical pap smear. Let's also imagine that I don't live in one of the largest metropolitan centers in the country, but in, let's say, Clearwater, Fla. I go to Google and find the Florida Breast & Cervical Cancer Early Detection Program. The opening paragraph tells me that they are free (good!), but I only qualify if I am a "woman." No, I am not welcome there. I suppose I could call and explain that, although I am not a woman, I have a cervix, but I fear the discomfort and discrimination I may face. No, "we provide pap smears for everyone who needs one" does not include me.

I know that there is an increasing number of organizations, facilities, and cancer websites that recognize the LGBT community. They show us that by including information we need, not by asking us to accept their one-size-fits-all approach. We need everyone to follow suit.

Last week, I met with a woman who wanted the National LGBT Cancer Network to distribute her articles on cancer survivorship. She said, "I don't specifically mention LGBT people in any of the pieces, but this information is of great benefit for everyone."

Really? She didn't understand that her information on the Family Medical Leave Act of 1993, FMLA, is of limited value for LGBT people. FMLA is the federal law that requires that workers at large companies (with 50 employees or more) be granted unpaid, job-protected leave to recover from a serious health condition or to care for a seriously ill family member. But due to the discriminatory Defense of Marriage Act (DOMA), LGBT workers cannot take paid and protected leave to care for domestic partners or same-sex spouses, even in states where they are legally married. So, no, I did not agree to distribute her articles.

As an LGBT person, my family is different, my support system is different, my access to care is different, and my welcome in your support groups is not guaranteed. If you don't know that and show me that you do, you are not including me. I will no longer be invisible and grateful.

Follow Liz Margolies, L.C.S.W. on Twitter: www.twitter.com/@
http://www.huffingtonpost.com/liz-margolies-lcsw/lgbt-cancer_b_1322293.html?ref=gay-voices


Reprinted at http://www.keystothecloset.blogspot.com

Op-ed: If Lesbians Are More at Risk for Cancer, Do Something

The number of lesbians dying from cancer is both unacceptable and suspicious of a larger problem, argues the director for the National LGBT Cancer Network.
By Liz Margolies, op-ed contributor

Paula Ettlebrick died of ovarian cancer last week and a whole movement grieves her loss. Her beauty, passion, and intelligence do not come around very often. My close friend Adria died six years ago after a losing struggle with ovarian cancer and she was mourned by her lover, her son, an entire caseload of psychotherapy clients, and me. We played tennis together every Thursday at 1 p.m. for 15 years. Ruth, one of my best friends since college, died of ovarian cancer three years ago. I have not yet recovered.

I will skim over the story of Shirley — my friend of 30 years with two young children, a partner, and ovarian cancer — as well as the dozen women I love who are breast cancer survivors. Oh, yes, I have a friend with lung cancer, too.

This is an epidemic. Our leaders, our friends, our lovers are getting cancer at a disproportionate rate and no one seems to be up in arms about it. Yet.

There are no T-shirts, no slogans. We view each lesbian who gets diagnosed with cancer as a personal tragedy, not a national scourge. When we learn about Cynthia Nixon or Wanda Sykes getting breast cancer, we are upset, of course, but we think of them as unlucky individuals.

It is a plague, I tell you, and the cause is found not in differences between our bodies and those of our heterosexual sisters, but in the social conditions in which we live. We need to do something. Be loud. Angry. Big.

Only 5% to 10% of all cancers can be traced to heredity, like a broken BRCA gene. Most causes are unknown, but many are linked to behaviors that are more prevalent in the lesbian community. The stress and stigma of living as sexual minorities takes its toll on our bodies. More and more research supports the idea that experiencing prejudice leads directly to health problems. As a group, we also smoke more, drink more, and eat a less healthy diet — all of which increases our cancer risks.

Then, instead of being extra vigilant about cancer screenings, we avoid the health care system. A large Harris Interactive poll of primarily white, middle class and educated lesbians found that 75% of them, the more privileged subset of all lesbians, avoided or delayed health care. Imagine what the numbers would be for lesbians of color, those who are poor, less educated, gender non-conforming, undocumented.

In most of my life, 2 + 2 = 4. I count on that. Higher-cancer-risk plus lower-cancer-screening must equal both a higher incidence of the disease and cancer found at a more advanced stage. But because no cancer registries collect information about sexual orientation (or gender identity), we remain hidden in the data. So, I can’t prove we have more cancer. Yet.

Look around you right now. How many lesbians do you know with cancer? More than your heterosexual sister, I am sure.

And what are we doing about it? Helping out with childcare or transportation or food during a friend’s chemotherapy is not enough. After someone we love dies of cancer, mourning is essential but not enough.

When our gay brothers died of AIDS, we organized, we demanded, we shouted. It is time for us to do that for our lesbian sisters today. If Paula Ettlebrick’s work changed your life one tiny bit, do not just weep alone. Do not just write a condolence card. Write the card, but then stand up, be angry, demand that we not lose another lesbian, another lover, another movement leader to cancer.

The last time I spoke to Paula, about a month ago, she wanted to work with me to organize the first conference in this country addressing cancer in the LGBT community.

Here is my preliminary list of demands. Add yours in the comments section below.

1. Demand that all hospitals and all cancer registries collect information on sexual orientation and gender identity, so we can prove our rates are higher. Without this data, we will not get federal recognition and funding.

2. Demand that more research be funded on lesbian cancer risks. We need to know more and have studies with larger samples.

3. Demand that all health care facilities — including cancer screening and treatment services — make LGBT cultural competence training mandatory, making it safer for us to use these services in a timely way.

4. Demand that these services reserve budget money to reach out to our community, showing us it is safe for even gender-nonconforming lesbians and transgender guys to get respectfully screened for cervical cancer and breast cancer.

5. Demand that all oncologists learn about our sexuality so they can answer questions about our sexual practices post cancer treatment. Currently, they cannot.

6. Demand that all places that offer cancer support groups create one for LGBT survivors and caregivers, thereby improving the quality of life currently reported by lesbians and bisexual women after their cancer diagnosis.

7. Demand affordable health care for all, a system that does not require legal marriage to an employed partner to get coverage.

Until our demands are met — until it is safe and affordable to engage with the health care system — you may not want to go alone to the doctor. But, we must go. Go in pairs, go in packs.

If you love her, get her screened. Today.

Liz Margolies is the founder and executive director for the National LGBT Cancer Network.
Posted at http://www.advocate.com/Politics/Commentary/Op_ed_How_to_Prove_Lesbians_Are_More_at_Risk_for_Cancer/

Reposted at http://keystothecloset.blogspot.com,

Study: Gay Men Are Twice as Likely to Have Cancer

By Meredith Melnick Monday, May 9, 2011 Time

Reposted at keystothecloset.blogspot.com

It makes for a grabby headline, but are gay men really more likely to develop cancer? A new study published in the journal Cancer found that gay men were nearly twice as likely to report a diagnosis of cancer than straight men. But why?

The study did not answer that question. It's not clear, for instance, whether gay men were more likely to develop cancer than straight men, whether they were more likely to be diagnosed, or whether they more likely to survive and report it.

Similar data in women found no difference in cancer rates by sexual orientation; however, the study did find that lesbian and bisexual cancer survivors were more likely to self-report poor or fair health than heterosexual women. Self-reported health status did not differ by sexual orientation in men.

Researchers led by Ulrike Boehmer of the Boston University School of Public Health analyzed three years of data on more than 120,000 adults who filled out the California Health Interview survey. Among other questions, the respondents were asked about their sexual orientation and whether they had ever been diagnosed with cancer.

Out of 51,000 men, about 3,690 reported having had cancer: they accounted for 8% of gay men and 5% of straight men; the increase in risk in gay men was not attributable to other factors like race, income level or age.

Among 71,000 women, 7,252 reported a cancer diagnosis, but the rate of diagnosis was the same regardless of sexual orientation. But women who identified as lesbian or bisexual were more than twice as likely to report fair or poor health than straight women after surviving cancer.

Again, the study didn't delve into the reasons for the disparities in rates of cancer diagnosis, but the authors said the gay community is more vulnerable to certain cancer risk factors. For instance, both gay men and lesbian women are more likely to smoke and abuse alcohol than their straight peers — these are known contributors to cancer.

Gays and lesbians are also less likely to get routine cancer screening and check-ups because of perceived discrimination from doctors, said Liz Margolies, executive director of the National LGBT Cancer Network.

The higher rates of HIV infection in gay men than in straight men could also help explain the difference: HIV-positive patients have a higher risk of anal, lung and testicular cancers and Hodgkin's lymphoma (HIV status was outside the scope of the study, however).

Another factor that may affect health in the LGBT community is "minority stress," lead author Boehmer said, referring to the psychological strain endured by minority groups as a result of prejudice or discrimination. MyHealthNewsDaily reported:

"It's been my experience that the lower quality of life that lesbians report after a cancer diagnosis does not reveal as much about the particular diagnosis, but more about our life experience in general, particularly when confronting a major life crisis" like a cancer diagnosis, a relationship change or a job loss, said Linda Ellis, executive director of the Atlanta Lesbian Health Initiative in Georgia, who was not involved with the study.

It's not that lesbian or bisexual women walk around more depressed than their straight peers, Ellis said. But coming out to each new person, whether it's the new nurse in the chemo clinic or the members of the cancer support group, takes a lot of energy, she said. ... In addition, it's not unusual for lesbian or bisexual women to have severed ties with family, so a person's natural circle of support may be weakened, she said.

The current was not designed to measure potential contributors to cancer and health risks in the LGBT community. But the findings suggest that public-health officials need to pay more attention to the gay, lesbian and bisexual population — particularly when it comes to cancer prevention and screening.

In April, an Institute of Medicine report proposed including sexual orientation information in medical records and in government studies as a way to increase understanding of the health risks that may be particular to the gay and lesbian community.

"At a time when lesbian, gay, bisexual, and transgender individuals — often referred to under the umbrella acronym LGBT — are becoming more visible in society and more socially acknowledged, clinicians and researchers are faced with incomplete information about their health status," said the report.

Read more: http://healthland.time.com/2011/05/09/study-gay-men-are-twice-as-likely-to-have-cancer/#ixzz1MXYnflls

U.S. Panel Suggests Research Into Causes and Prevalence of Health Issues Facing Gays

By ROBERT PEAR Published: March 31, 2011, reposted at http://www.keystothecloset.blogger.com/

WASHINGTON — The federal government should systematically collect demographic data on gay, lesbian and transgender people and should conduct biomedical research to understand why they are more likely to have certain chronic conditions, the National Academy of Sciences said Thursday.

In a report requested by the National Institutes of Health, the academy proposed an ambitious research agenda to investigate the prevalence and causes of obesity, depression, cancer, heart disease and other conditions among gay people.

Federal officials had asked the academy’s Institute of Medicine to identify gaps in research on the health of gay Americans. Dr. Robert O. Graham, the chairman of the panel that did the study, said that was impossible.

“The available evidence on the health of lesbian, gay, bisexual and transgender people is sparse,” said Dr. Graham, a professor of family medicine at the University of Cincinnati. “Researchers need to do much more than simply filling gaps.”

The panel, appointed by the Institute of Medicine, said the government should finance research to develop standardized measures of sexual orientation and gender identity — “one’s basic sense of being a man, woman or other gender, such as transgender.”

Gay people often face “barriers to equitable health care,” decline to seek care in times of need and receive substandard care when they seek it, the report said.

“Fearing discrimination and prejudice,” it said, “many lesbian, gay, bisexual and transgender people refrain from disclosing their sexual orientation or gender identity to researchers and health care providers.”

In addition, the report said, many doctors lack the necessary training. “Medical schools teach very little about sexuality in general and little or nothing about the unique aspects of lesbian, gay and bisexual health,” it said.

The panel said the National Institutes of Health should strongly encourage researchers to include “sexual and gender minorities” in studies whenever possible, just as they include women, blacks, Asian-Americans and Hispanics.

In its report, which offers a comprehensive survey of information about the health of gay Americans, the panel made these points:

·          “On average, men tend to show greater interest in sex and express a desire to engage in sex more frequently than women. These patterns appear to occur in both heterosexual and homosexual populations.”

·          Gay youths and adults are typically well adjusted and mentally healthy, but some research indicates that they are more likely to be depressed, have suicidal thoughts and attempt suicide.

·          “Lesbians and bisexual women may be at higher risk for breast cancer than heterosexual women.”

·          Some studies suggest that long-term use of hormone therapy by transgender people may increase their risk for cancer, but more research is needed.

·          In addition, the report said, “Some research suggests that lesbians and bisexual women have a higher risk of obesity than heterosexual females.” Lesbians may also have higher rates of smoking and alcohol consumption than heterosexual women, it said.

A version of this article appeared in print on April 1, 2011, on page A16 of the New York edition.

http://www.nytimes.com/2011/04/01/health/policy/01gays.html?_r=1&ref=research