Dr. Susan Love

Since the blogosphere has been abuzz with news about breast cancer organization Susan G. Komen for the Cure pulling funds from Planned Parenthood, I thought I’d post the slightly revised version of an interview I did several years ago with Dr. Susan Love for the now-defunct 365gay.com. Her Dr. Susan Love Research Foundation is taking an innovative approach to breast cancer research, building an “Army of Women” (and some men) to participate in studies and surveys related to the disease. She’s committed to including LGBT people in her Army, as evidenced by a recent call for lesbian and bisexual volunteers for the “Variations in Health Needs of Breast Cancer Survivors Study.” You may also remember Dr. Love from her guest appearance on Season 3 of The L Word (or from her inclusion in my annual “Most Powerful Lesbian Moms in America” list).

This piece first appeared in October 2009.

Dr. Susan Love Recruits an LGBT Army Against Breast Cancer

“Breast cancer doesn’t have to go on to another generation,” said the renowned breast cancer advocate and surgeon Dr. Susan Love. “We can be the generation that stops it.” Love is recruiting a one-million strong “Army of Women” (and some men) to do just that. Love, an out lesbian, is also committed to making the LGBT community an integral part of the effort. 

She and her Dr. Susan Love Research Foundation launched the pioneering initiative in 2008 with funding from the Avon Foundation. Now, 311,000 people have signed up [360,000 as of October 2011], agreeing to receive e-mail updates from the Army of Women about breast cancer studies looking for volunteers. Some studies might involve only a simple questionnaire. Others could require blood, urine, or milk samples. Some could involve clinical trials, although most will not. If a person fits the criteria and wants to take part in a particular study, she clicks a link to respond. There is no obligation to participate in any of them.

One thing that makes Love’s Army unique is the large number of healthy women taking part. Eighty percent of members have not had breast cancer and are not at high risk, Love says. Most previous studies of breast cancer, however, have been on women with cancer or on animals. Love believes that only by involving real women, with and without cancer, will we be able to determine how real women develop the disease. Currently, she said, “the risk factors that we look at only predict about 20 percent of breast cancer, which means we just don’t know what causes it.”

She thinks many are ready for a different approach, explaining, “The fact that in less than a year we have 311,000 signed up . . . shows me that there’s an enormous appetite out there for people to be involved in finding the solution.”

She added, “This October, everything is pink everywhere, and people are walking and running and buying products, but the question is, where’s the money going, and how is it changing things? . . . I think it’s really time for us to put our bodies on the line and say we’ll be part of answering these questions.”

As of October 2009, more than 11,000 Army volunteers have participated in 14 studies by approved independent scientists [50,000 volunteers in 52 studies as of October 2011]. “The [researchers] that have used it have been thrilled,” Love reported. “We’ve closed many studies in 24 hours that usually take them five or six years to recruit for. That means we get answers faster. That means you can do the research cheaper.”

It also makes it easier for researchers to study small subgroups of the population, including parts of the LGBT community. Looking at breast cancer in lesbians is one obvious avenue for research, but Love also wants to investigate the almost entirely unexplored area of breast cancer in transgender people. “I think there’s a wealth of information in studying that community,” she asserted. “That’s a community where you’ve taken different types of hormones that do affect breast cancer [in non-transgender women] at different times in life, and nobody’s really studied what does that do to the breast tissue [of transgender people]. Are they at risk? Aren’t they at risk? We have no idea.”

Love wants to study the risks for both male-to-female transgender individuals as well as female-to-male individuals who have not had their breast tissue removed. Additionally, she would like to find funding to study the breast tissue of those who have had it removed after taking testosterone for some time.

Love also wants to determine the risk factors for breast cancer in non-transgender men, which occurs about 2000 times a year in the U.S. She is working with the John W. Nick Foundation, which promotes male breast cancer awareness, to actively recruit men to the Army. “Nobody’s really been able to track male breast cancer before, because it’s not that common,” she said. “By doing it through the Internet, we can probably have the biggest cohort of male breast cancer survivors without too much trouble.”

By looking at these subgroups, Love says, we might be able to discover hints about the causes of breast cancer that get washed out when looking at the broader population. That could have benefits beyond the smaller groups alone.

Until causes and cures are found, however, breast cancer is still a threat. For LGBT people who are diagnosed, Love advises being out to our doctors. “If the doctor has a problem with that,” she said, “then you want to know and get another doctor, because it’s bad for your health to be worrying about what’s going to leak out or what they’re going to think while you’re trying to deal with something as serious as cancer.”

She also offers some general advice: “The important thing to know about breast cancer is it’s not just one disease. If you get diagnosed with breast cancer, it’s really critical to not rush into anything, to take a deep breath, to get all the information.” Tests can now show what type of cancer it is, which will determine the best treatment.

Love feels her Army could have an impact on overall health care reform in our country, too, by providing a model for the type of research that could be done with electronic medical records. She also notes that because of the influence of pharmaceutical companies, attacking breast cancer has largely centered around drugs and treatments, with new ones piling on old. “All of those treatments have significant side effects,” she said. “Changing the aim to finding the cause is a more public-health way to approach things.”

The benefits may not be in breast cancer alone. “If we have a million people giving us their information,” Love said, “then it would be a crime if we just looked at breast cancer. . . . But we’re starting out with that. That’s certainly my claim to fame, so I can recruit people on that, and then we’ll go from there.”

Queer people will play an important role, regardless, Love insisted. “The LBGT community has been in the forefront of most major health movements. I think we can do it again.”

Find out more about the Army of Women at armyofwomen.org.

According to the AP (via NPR), the Komen grants to Planned Parenthood “totaled roughly $680,000 last year and $580,000 the year before, going to at least 19 of its affiliates for breast-cancer screening and other breast-health services.” That money paid for nearly 170,000 of the 4 million breast exams Planned Parenthood performed over the past five years.

There are many strong and thoughtful responses appearing in response to the news. Colorlines has a good piece on the implications of the Komen decision on low-income women, immigrant women, and women of color. And Dr. Susan Love, a leading breast cancer researcher and advocate (and lesbian mom), noted, “Investigation does not mean guilt. What happened to innocent until proven guilty?” and suggested, “Let’s redirect all the money that will be spent on investigating Planned Parenthood into funding studies looking to find the cause and prevent the disease once and for all.”

I don’t write a lot about being pro-choice here. A little focus is a good thing, and writing about LGBT equality keeps me busy enough. I was a pro-choice feminist before I was an out lesbian, however, and those roots go deep. Not to mention that my father and several other relatives have died of cancer. I’m appalled by the defunding of an organization that helps hundreds of thousands of women—including many low-income women—get screened for cancer each year, especially when the money is but a drop in Komen’s deep, pink, bucket.

Not that many, many other health care funding decisions aren’t driven by politics. (See the history of HIV/AIDS funding for an object lesson.) But that doesn’t mean we should let such decisions go unremarked or unchecked.

It’s good to see private funders are stepping up to help Planned Parenthood. Their defunding by Komen might in the long run be a good thing, in that it may help them attract even more money and raise awareness of the wide range of health care services they provide. Let’s hope.

I have interviewed Groundspark’s founder, Academy Award-winner (and lesbian mom) Debra Chasnoff, about several of her other films, Straightlaced (on gender stereotypes), It’s STILL Elementary (on teaching elementary students about gay people), and Choosing Children (on the first wave of lesbians choosing to be parents after coming out.) Good films all, and highly recommended.

To obtain your free digital stream of Let’s Get Real, send an email to streamfree@groundspark.org saying “Let’s Get Real” NNCW 2012 in the subject line.

(Thanks, GLSEN!)

The striking part about the findings in the new study,  Playgrounds and Prejudice: Elementary School Climate in the United States, is not that such bullying exists, but that it is so widespread. Almost half of the teachers and students surveyed reported regularly hearing comments like use of the word“gay” in a negative way (e.g., “that’s so gay”), “spaz,” or “retard.” About one quarter reported regularly hearing students make homophobic remarks, such as “fag” or “lesbo” and negative comments about race/ethnicity.

Three-fourths of students reported that “students at their school are called names, made fun of or bullied with at least some regularity,” most often because of students’ looks or body size (67 percent), by not being good at sports (37 percent), how well they do at schoolwork (26 percent), not conforming to traditional gender norms/roles (23 percent) or because other people think they’re gay (21 percent).

Of equal interest to me are the findings on family diversity and teacher preparedness. Almost three-quarters of students say they have been taught that there are many different kinds of families—but less than 2 in 10 have learned about families with two dads or two moms. 

Nearly 90 percent of teachers report including representations of different types of families when discussing families in the classroom—but less than a quarter report including representations of LGB parents, and less than 1 in 10 represent transgender parents. Only a quarter report “having personally engaged in efforts to create a safe and supportive classroom environment for families with LGBT parents.”

Eight in 10 teachers said they would feel comfortable addressing name-calling, bullying or harassment of students who are perceived to be LGB or gender nonconforming. But less than half said they feel comfortable responding to questions from their students about LGB people, and even less felt comfortable about questions from their students about transgender people. And while 85 percent of teachers said they received professional development on diversity or multicultural issues, just over a third received professional development specific to gender issues and less than one quarter on families with LGBT parents.

In order to help educators address the above issues, GLSEN today also released the instructional resource Ready, Set, Respect! GLSEN’s Elementary School Toolkit. In addition to that toolkit, I’ll also point readers to the Welcoming Schools program from the HRC Foundation, the PFLAG Safe Schools: Cultivating Respect program, and the films (and associated curriculum guides) That’s a Family and It’s STILL Elementary (for students and teachers, respectively) from Groundspark.

Teachers should not bear the full responsibility of instilling respect in children. Much, if not most, of this must come from parents (which is why it is good to see mainstream childcare books, like the new edition of Dr. Spock’s Baby and Child Care, start to address LGBT topics). But teachers can play an important role, and it is good to see there are an increasing number of resources to help them do so.

The study was conducted by Harris Interactive on behalf of GLSEN. Online surveys were conducted among 1,065 U.S. elementary school students in 3rd to 6th grade and 1,099 U.S. elementary school teachers of Kindergarten to 6th grade. The national sample was drawn primarily from the Harris Poll Online (HPOL) opt-in panel and supplemented with sample from trusted partner panels.

Dr. Susan Love

Dr. Susan Love is something of a legend in the world of breast cancer research and advocacy. (She also happens to be a lesbian mom.) Her Dr. Susan Love Research Foundation launched the “Army of Women” in October 2008 with the goal of recruiting one million women of all ages and ethnicities, including those who have never had breast cancer as well as breast cancer survivors, to participate in a variety of research studies. (Here’s my 2009 interview with Dr. Love about her then-new Army.) Now, her Army is seeking more lesbians and bisexual women.

The Army of Women is teaming with Ulrike Boehmer, Ph.D, at the Boston University School of Public Health for the “Variations in Health Needs of Breast Cancer Survivors Study.”  A publicist from Dr. Love’s Foundation tells me, “Boehmer and her research team are looking to interview 600 lesbian or bisexual women nationwide who have had breast cancer or are currently dealing with the disease to understand the well-being and quality of life of these women.  The information will be gathered through simple phone interviews and used to develop programs and services that can specifically address these women’s quality of life.”

If you’re interested, read the full details after the jump. 

Lesbian and Bisexual Women in the US Diagnosed with Breast Cancer Needed!

 It is widely known that a breast cancer diagnosis can have far reaching effects both socially and emotionally.  Less well understood are the ways in which a breast cancer diagnosis impacts the well-being and quality of life of women who have historically been underserved by the medical community.  Lesbian and bisexual women are one of these underserved populations, and little research has been done to assess their health and well-being as women with breast cancer.  Identifying their unique needs by asking some questions in a survey will help researchers to develop culturally appropriate programs for these women.

The researchers are interested in hearing from all lesbian and bisexual women who have had a breast cancer diagnosis. They have a particular interest in women who have metastatic disease, recurrent disease, or an additional invasive cancer diagnosis, or are currently undergoing cancer treatment. If you have ever been diagnosed with breast cancer, please read on to learn more about what’s involved and who can participate.

If this study isn’t a right fit for you, but you know someone who might be interested in participating, please pass it on!  Forwarding our information to friends and family is just as important as participating in a study.

 What’s the study about?

The information gained from this research about the well-being and quality of life of lesbian and bisexual women with breast cancer will be used to develop programs and services designed to reduce health disparities.  After the research team enrolls the lesbian and bisexual women, they will enroll heterosexual women to take part in the phone survey.

What’s involved?

If you choose to join this study, you will be asked to take part in a phone survey that will last approximately 45 minutes.  Questions about your health, medical history, demographics, and sexual orientation will be asked.  Six hundred women are needed for this study.

 Who is conducting the study?

Ulrike Boehmer, PhD, at the Boston University School of Public Health in collaboration with Brown University.

Where?

Anywhere in the United States.

 Who can participate?

You can sign up for the Variations in the Health Needs of Breast Cancer Survivors Study if:

• You identify as lesbian, bisexual, or as a woman who partners with women

AND

You have been diagnosed with breast cancer at some point in your life

After you RSVP, the researchers will ask you additional questions to be sure that this study is a right fit for you.

One additional resource is the “Rainbow Spectrum” Yahoo group for LGBT parents with children on the autism spectrum. If you know of any others, please leave a comment!

According to 2010 UNAIDS estimates (via Avert):

• At the end of 2009, there were 2.5 million children [defined as those under 15 years of age] living with HIV around the world.
• An estimated 390,000 children became newly infected with HIV in 2010. [That's 15 percent less than in 2001, but five percent more than in 2009.]
• Of the 1.8 million people who died of AIDS during 2009, one in seven were children. Every hour, around 30 children die as a result of AIDS.
• There are more than 16 million children under the age of 18 who have lost one or both parents to AIDS.
• Most children living with HIV/AIDS—almost 9 in 10—live in sub-Saharan Africa, the region of the world where AIDS has taken its greatest toll.

May today not be the only day we think of those affected, or try to do something to help them.

Contrast this to the Netherlands, “where teenage pregnancies are far less frequent than in the United States, [and] parents aim above all for family cohesiveness, often permitting young couples to sleep together and providing them with contraceptives.”

Gay dad Stephen Russell wrote recently at HuffPo about how he applied his friend and colleague Schalet’s findings while negotiating dating and sex with his teen son (who also happens to be gay). It’s a great case study in how sometimes not pushing too much can be more effective than coming down hard with the rules.

I’m the parent of an eight-year-old, not a teen, and have no direct experience with my son and dating. Have any of you had teens who wanted to have a date stay the night (or spend any extended period behind closed doors)? How have you handled it? What advice would you give others?

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I’m also going to jump on the bandwagon and share the Steve Jobs video that is making the rounds. In his commencement speech at Stanford University, he offers some wise insight about life and death. Also of note for readers here is the fact that he was adopted. Successful people—as I probably don’t need to tell you—come from all types of family structures. (As do unsuccessful ones; but I think we can eliminate family structure as a determining variable.)

Hurricane Irene raged up the East Coast this past weekend, sending people scrambling to the stores for bottled water and canned tuna. Of course, hurricanes weren’t the only thing I prepared for this week. Back-to-school time is here, so I’ve been buying pencils and erasers alongside the flashlight batteries. And because I am an LGBT parent, I’ve also been thinking about the “emergency supplies” we should have as we navigate the sometimes-stormy weather of our educational system, in case our children encounter anti-LGBT prejudice, bullying, or simply exclusion.

Some of the most exciting new school-related resources this year are about sports, long an area where homophobia and transphobia have reigned. A 2008 study by the Gay, Lesbian and Straight Education Network (GLSEN) found that some students with LGBT parents were told they should not do sports, or had their athletic abilities questioned, because they had LGBT parents. And GLSEN’s 2009 National School Climate Survey found that over a third of LGBT students avoided locker rooms, making them the most feared place in the school for these students.

But GLSEN in May launched Changing the Game: The GLSEN Sports Project, backed by a coalition of athletes, journalists, and sports figures. It features “Game Plan” resources for athletes, athletic administrators, coaches and parents, inspirational videos about people making a difference, and the Team Respect Challenge pledge “for teams to commit to treat all teammates with respect.” The San Diego Padres in July became the first professional team to sign it.

Athlete Ally, launched in January, offers individuals an online pledge to reduce homophobia in sports. Founded by Hudson Taylor, a straight, three-time NCAA Division I All-American wrester, now a Division I wrestling coach at Columbia University, the site also includes a weekly “Ally’s Playbook” video with suggestions for how non-LGBT athletes can help reduce homophobia. Hudson is also seeking high school and college students to be “Athlete Ally Ambassadors” to promote the pledge and participate in future initiatives.

And the Sports Project at the National Center for Lesbian Rights (NCLR), launched in 2001, has long been a powerhouse of advocacy and education. It also offers legal assistance for LGBT athletes and coaches.

Sports aside, there are also a number of more general resources to help make schools safe for students from all types of families.

For parents with children in elementary school, the Human Rights Campaign’s An Introduction to Welcoming Schools guide is perhaps the best single resource. It aims to help elementary school administrators, teachers, parents and guardians address family diversity, gender stereotyping and bullying, and includes a bibliography of books on all kinds of families, LGBT and not.

The Family Equality Council’s “Back to School Tool” is a useful short guide for LGBT parents on how to make our children’s schools safer and more inclusive. The organization also offers “Opening Doors,” a short but helpful booklet with tips for educators and others. It discusses the kind of prejudice children of LGBT families may face, how educators can support them, and how they can answer questions other children may have about them.

Many resources aimed at older students focus on LGBT youth, but most also have applicability to children of LGBT parents, whatever the children’s sexual orientation or gender identity:

GLSEN has extensive safe-schools materials for both educators and students, including information on its educator training program and starting gay-straight alliances.

PFLAG’s Safe Schools for All: Cultivating Respect program has similar materials (in both English and Spanish) for making schools safer, reducing bullying, and providing comprehensive health education. They also offer a certification program for PFLAG members who want to assist with staff training and policy creation in local schools.

The Gay-Straight Alliance Network has materials for starting or sustaining a GSA, as well as the guide “Beyond the Binary: Making Schools Safe for Transgender Youth,” a joint project with NCLR and the Transgender Law Center.

NCLR has additional safe-schools information, including samples of anti-harassment policies and memos to school boards.

The American Library Association’s Rainbow List offers LGBT-inclusive children’s and young adult books chosen by a committee of librarians for quality as well as content.

Groundspark’s series of LGBT-inclusive diversity-education films include That’s a Family, for elementary school students, about different family structures; Let’s Get Real, for middle schoolers, about name-calling and bullying; It’s STILL Elementary, for and about educators discussing gay issues in schools; and Straightlaced, for teens, about the pressure of gender stereotypes. Curriculum guides make the films easy to incorporate into diversity and anti-bullying programs. The films are also available for individual screening online: $4.99 for 90 days of on-demand viewing.

Of course, as in a storm, often our best resources are our neighbors and friends. When it comes to LGBT issues in schools, this could include other LGBT parents and parents of LGBT children—but also families who may have similar concerns about exclusion and/or harassment because of their family structure, race, ethnicity, religion, or other reasons. It could also include “traditional” families who know that LGBT families are as much a part of communities across the United States as anyone else—and that we’ll even share a few cans of tuna during the next hurricane.