At Last, Sexual Orientation Question is Added
To CDC’s Youth Risk Factor Behavior Survey

On the heels of LGBT Pride events last weekend, takes a look at efforts to include LGBT individuals in health services research, health planning, and systems of care. Efforts to reduce disparities did not end with the defeat of the Defense of Marriage Act, bans on gay conversion therapy, and transgender individuals coming into focus –all very wonderful events that occurred in the past year. Much more needs to be done to build a more inclusive health care system and improve the health and well-being of LGBT individuals. This post is the first in a series that take up critically important work now underway that hopefully will reduce health disparities for LGBT-Q individuals. Today’s post focuses on improving the science, getting good data on the health and risk status of lesbian and gay adolescents.

At first blush, data may seem like a deadly topic for many readers, but collecting health data forms the basis for determining and reducing health risks, funding prevention and intervention programs, and ultimately improving the health of groups under study.

In early June, the Centers for Disease Control and Prevention finally agreed to incorporate survey questions on sexual orientation (LGB) into its standard annual Youth Risk Factor Behavior Survey. Advocates see this as a tremendous advance because sexual orientation has never been included routinely in many national health surveys paid for by our tax dollars.

The Youth Risk Factor Behavior Survey monitors six types of health risk behaviors that contribute to the leading causes of death and disability among youth: behaviors contributing to unintentional injuries and violence; behaviors that contribute to unintended pregnancy and sexually transmitted diseases, including HIV; alcohol and other drug use; tobacco use; dietary behavior; and inadequate physical behavior.

Why is this important?

Caitlin Ryan, Director of the Family Acceptance Project, San Francisco State University, San Francisco, CA, put this change into perspective.  “It took nearly 60 years of research on sexual orientation plus years of advocacy and the Institute of Medicine Report on LGBT Health,” she said. “We are past the tipping point. I think of the difference it will make to have accurate data on health risks for LGB youth and hopefully soon for transgender youth in these jurisdictions.” (Many advocates believe that asking about transgender gender identity is so new that it is premature to incorporate).

“Up until now, it was too politically challenging to ask about sexual orientation, but the need to ask these questions is huge,” said Donna Futterman, MD, Director of Adolescent AIDS Program, and Professor of Pediatrics, at Children’s Hospital of Montefiore, Bronx, NY. “We need to include sexual orientation because bullying, violence, suicide, homelessness, HIV, and sexually transmitted infections are higher in LGBT groups. Getting real numbers is important in ramping up prevention and intervention programs.”

homeless gay youthPatrick Paschall, National Gay and Lesbian Task Force, praised the change in the Youth Risk Factor Behavior Survey: “Adding a sexual orientation question to the Youth Risk Factor Behavior Survey is a huge step toward identifying and ultimately eliminating disparities LGBT youth face,” he said. “This will yield a level of data that we have not ever seen. Perhaps more importantly, this question will now appear on the standard set of survey questions for the foreseeable future, producing updated youth risk data annually.  The significance of this step will not be fully realized until the data is released in 2016, but make no mistake – this will change the way our society and the government addresses the needs of LGBT youth for decades to come.”

Look at it as a parallel to “don’t ask, don’t tell.” If you don’t ask about sexual orientation, the people you are surveying don’t exist, they are not included in society. It’s a notion that needs to be buried. Here’s hoping that more inclusive changes in health survey data continue to move forward.







Testosterone Replacement Trials Proceed Slowly

(part 2 of 2 posts)

Alerting men to screening and treatment for low testosterone may get them in to their doctors faster, but they may be astounded to learn that the science in the field is wanting. The National Institute of Aging only enrolled its first patient in a testosterone replacement trial a little over a year ago, according to Peter Snyder, MD, principal investigator of the trial, and endocrinologist at the University of Pennsylvania, Philadelphia.”You can’t make any conclusions about whether it does any good,” said Snyder, who added that in 2003, an Institute of Medicine Panel urged systematic study in older men and recommended against “widespread, generalized use to prevent possible age-related diseases or for enhancing strength or mood in otherwise healthy older men.”

On the day that the report was released, a New York Times editorial titled “The Testosterone Gamble” opened with this question: “Can American men be rushing into the same reckless use of hormones that brought grief and anxiety to so many unsuspecting women?”

Although proponents of testosterone liken testosterone levels declining in a similar fashion to female menopause and refer to “male menopause” or “andropause,” the IOM Committee concluded that there is “scant evidence” for a shutdown like there is among women. In fact, the Committee concluded that supplements “are only appropriate for indications approved by the FDA (the primary indication is hypogonadism in men who make little or no testosterone.)”

The Committee is not alone in this assessment: many physicians told me that they worry that men will use testosterone replacement therapy before studies of effectiveness, benefits, and any problems are known.

Research Priorities

The wheels of science proceed slowly, perhaps too slowly for those who want to try the latest drug. Without rigorous study, there could be harm. In fact, some research has raised concerns about testosterone accelerating prostate cancer and an enlarged prostate (BPH); one  study was halted because of heart effects.

The IOM Committee pressed for studies that would show whether testosterone is an effective treatment in men with low testosterone levels. Unless a clear benefit is demonstrated, the Committee urged not proceeding to studies of long-term risks.

A top priority is to test testosterone replacement among men age 65 and older whose testosterone levels are below the physiologic levels of young adults. These would be randomized, short-term, placebo-controlled randomized trials. Outcomes should be measured in four areas, weakness/frailty/disability; sexual dysfunction; cognitive dysfunction; and well-being/quality of life. If clinically significant benefit is demonstrated in the early trials, long-term studies should follow,according to the Committee. Safety should be assured in all the trials. Further study of age-related changes in testosterone levels should also be done.

The Testosterone Trial

A coordinated set of six trials is being done at 12 sites around the country, under the direction of the National Institute of Aging, according to Snyder. “We are selecting men age 65 and over with unequivocally low testosterone, 275 ngs on two separate early mornings because these are the men we would anticipate might get the most benefit,” said Snyder. Overall, 80 percent of men have values over 275 at 2 separate times.

Testing testosterone replacement in men age 65 and over is in contrast to the advertising, which focuses on men age 45 and over. “We have strict entry criteria so that men have a very low risk for prostate cancer and at least one of the following conditions: anemia, decreased physical function, low vitality, impaired cognition, or reduced sexual function,” Snyder added. Men in the study either get a testosterone gel (AndroGel/Abbott) or placebo gel to be applied to the torso, abdomen, or upper arms. The testosterone is given first as a loading dose and then adjusted so that the gel brings testosterone into the normal range.

“Of every 100 men who call into our sites, one ends up satisfying enrollment criteria and gets enrolled.” In contrast,  advertising suggests that as many as 38 percent of men age 45 and over have low testosterone and may benefit from treatment.

After New York Passes Lesbian and Gay Marriage,
A Challenge to the Media

I am thrilled to be a New Yorker today!! Marriage is a fundamental right for all Americans. But it is far from over.  I am troubled that so many of my peers ignore lesbian and gay issues, leaving it for someone else to cover. And I am not talking about the obvious villains here like Fox News, but health and science reporters and bloggers, who consider themselves at the forefront of science advancement, social justice, and investigative reporting working for a better planet and fairness on many important issues.

Lesbian, gay, bisexual, and transgender people are not—and should not be treated as if they are at the margins of society.

Advancements in lesbian, gay, bisexual, and transgender policies this year are notable. The Institute of Medicine, for the first time recognized that health researchers should include lesbians, gays, bisexual, and transgender people in research. New York City Health and Hospitals Corporation passed and is now implementing a new initiative to ratchet up staff training and care for lesbian, gay, bisexual, and transgender people, starting with the premise: “If You Don’t Know Me, How Can You Treat Me.” In April 2010, President Obama extended hospital visitation and participation in medical decision making to LGBT partners.

But it is not all progress by any means. There have been setbacks and disappointments. It’s just a handful of states with gay marriage on the books. And getting quality healthcare for lesbians and gays wherever they live needs to become part of the mainstream. And President Obama has a gay marriage problem: he’ll press for rights, but not gay marriage. And this is not all: worst of all, there are hate crimes, even in the great state of New York. They must stop and offenders must be prosecuted.

Anybody who wants to ratchet up the conversation on these issues, let’s go! Please contact me below, follow me on twitter at lauranewmanny, or send me an email, to patientpov “at” gmail “dot” com, and most importantly, talk with each other.

There is a huge opportunity for progressive media to use all the tools of new and old media to educate the public. Let’s move. It’s never too late to be inclusive.  There is so much to say. Let’s expand the audience.