By Phyllis Greenberger. The non-profit advocacy organization, the Society for Women’s Health Research (SWHR), based in Washington DC is widely recognized as the thought leader in research on sex differences, and is dedicated to improving women’s health through advocacy, education, and research.  Because of SWHR’s efforts, women are included in medical research, and scientists are looking at the different ways health and disease affect men and women and the reasons why. SWHR attributes its advocacy and communications successes to using evidence-based policy in multi-pronged education efforts, as well as to its involvement of a mix of healthcare providers and policy makers dedicated to improving women’s health. SWHR’s advocacy and communications efforts extend beyond lobbying legislators and regulators; it includes education of federal legislators and their staff; scientists who are employed by the federal government, academia, industry, as well as the public.

Advocacy and Communication with the Public

In addition to providing the latest research on conditions that affect women differently from men, SWHR’s education and communications efforts also emphasize that women need to become advocates for themselves and their families. SWHR is founded on the belief that health can be improved through research efforts and this new knowledge must be communicated and translated into individual care, which requires an up-to-date, current exchange of information between health care providers and their patients. 

SWHR’s first major public educational effort was the “Woman Can Do” campaign, to educate and recruit more women about becoming involved in medical research. After the regulatory changes mandating women’s participation in research, SWHR was made aware of the facts that researchers had difficulty finding women to participate in research studies. In 2003 nearly 90 other organizations joined SWHR’s Alliance for Women in Clinical Research to educate women about medical research and ways they can participate. The campaign continues today and additional information can be found on the Women Can Do website .

To further help promote the importance of providing the public with valuable and accurate health research information. SWHR annually presents the “Excellence in Women’s Health Research Journalism Awards” to honor journalists who excel in this arena.

SWHR works to provide women, who make about three-fourths of the health care decisions in the United States, with advice that communication with healthcare providers is a two-way street and with the information that allows them to participate in decisions impacting themselves and their family members.  SWHR’s educational programs and written materials, as well as our web site, also serve as resources for practitioners involved in women’s health issues.

SWHR is committed to ensuring that women’s health remains a high priority on the national agenda, that sex differences become more widely recognized as vital to healthcare treatment options and to advocating for  increased funding for related research.  SWHR will continue to partner with the widest possible range of healthcare providers and policy makers to gather evidence-based knowledge and then communicate it to Congress, the scientific research community, as well as to healthcare providers and the public.

By Phyllis Greenberger. I just love this—it happens every time. Leave it to the news media to decide whether something is a real health issue or not. That they know little or nothing about the medical condition doesn’t stop them. The latest example is Hypoactive sexual desire disorder (HSDD), a condition that affects as many as 20% of women. It is a loss of desire or libido without any other concurrent medical condition. But, if these journalists (and I use that term loosely) haven’t heard of a condition, especially this one because it has to do with female sexual dysfunction, they are sure a drug company made it up.

I heard this with PMDD, fibromyalgia, restless leg syndrome, chronic fatigue syndrome. The media and a few doctors said there was no such thing in each of these situations, until time and research proved them wrong. For example, in 2004 when a possible treatment for PMDD was seeking FDA approval, an article in the Washington Post severely criticized Eli Lilly for developing a medication for a made-up condition. Yet, on Tuesday June 22, 2010 the same Washington Post published a lengthy article with personal stories of several women suffering with PMDD and quoted physicians and sited research on PMDD, seemingly now an accepted health condition. By the way, Lilly’s therapy is successfully being used in Europe.

HSDD — Is this a made-up illness? The fact is that years of research and many doctors have treated women who complain about lack of desire– even when young, healthy, and happily married. The research about women’s sexual dysfunction is not new; lack of sexual desire, lack of ability to be aroused, painful sex, and failure to orgasm are all considered sexual dysfunction. Female sexual dysfunction has been listed in Diagnostic and Statistical Manual of Mental Disorders for more than 20 years. In the late 1970’s Helen Kaplan and Harold Lief, who separately were diagnosing lack of desire and calling it by different terms, proposed that APA include this condition in the Diagnostic and Statistical Manual of Mental Disorders III. The diagnosis of Inhibited Sexual Desire (ISD) was added to the DSM III and was published in 1980. There are at least ten recent articles on PubMed discussing HSDD, screeners, and communication about HSDD. (more…)

I am fairly confident that most women—certainly those post-menopausal or peri-menopausal—are aware of the extensive media coverage and dire warnings following the release of the results of the Women’s Health Initiative (WHI) study on hormone replacement therapy (HRT) in 2002.  At that time, it was stated that HRT is detrimental to a woman’s health, with risks outweighing the benefits.  It stated, pretty unequivocally, that HRT increased risk of breast cancer, cardiac events and stroke.

It would be overstating to say that all of the 2002 results were inaccurate, since, as we know, science is rarely definitive and more information is constantly emerging and being revised; however, women should know that many of the initial results have been found to have been distorted, misunderstood, over-generalized, and in some cases flat out wrong.  While the updated findings have been published in various scientific papers and journals, the mass media continues to refer almost exclusively to the 2002 WHI negative results.  Having received the attention they wanted, they have moved on.  But what if some of the findings turned out to be wrong…

A few recent examples highlight this continuing problem of misinformation:

-The New York Times recently published an article on what is currently known about what causes cancer and what prevents it.  The underlying thesis was that we know very little, but two things we do know:  first, that smoking causes cancer (okay, we can all agree on that); second, that HRT causes breast cancer.

-A November 29 article on sex and menopausal issues, also in The Times, stated that many women stopped taking hormone therapies because of their link to small increases in breast cancer, heart attacks and strokes.

-A November 12 article in HealthDay News posited that the “declining use of HRT” may be driving down rates of a condition called atypical ductal hyperplasia—a known risk factor for breast cancer.  Other articles have gone even further, to say that the incidence of breast cancer is down for the same reason.

Seemingly no one in the mainstream media is quoting the analyses and research that questions all of the 2002 results.  For example, in an article published in The Cancer Journal in 2009, Dr. Avrum Bluming, Clinical Professor of Medicine at the University of Southern California and Master of the American College of Physicians, along with Dr. Carol Travis, debunk many of the previous 2002 research findings.  Their work joins a growing list of reports on the WHI results and newly published research studies, chipping away at the theory that HRT is bad for all women, all of the time.

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The following post represents my personal opinion and not that of any groups or organizations with which I am affiliated.

Okay, it’s enough already! Why is it that women are always the target? First it’s abortions, then mammograms, pap smears following closely, behind and now cosmetic surgery (although that’s not only women!) It looks like the Congress is desperate to find any savings anywhere. Why not tell it like it is, it’s raising taxes. Whether it is through so called elective procedures or levying taxes on devices and diagnostics, to be passed on to the patients, it’s a tax.

Instead of rewriting the rules on mammograms which will cost lives, maybe not that many, but if it is your life that’s all that matters and focusing on false positives and unnecessary screening, why not invest money in better mammograms that are more effective in identifying a lump or even distinguishing a fast growing one from a slow one. Taxing companies who make these diagnostics, while lowering reimbursement rates is not exactly a motivator for more research and innovation.

And by the way, these recommendations for mammograms are a classic example of “comparative effectiveness”, which it very well may be, but the reaction from the American public is an indication of how difficult cutting any services will be—not a great start. And no sooner does the US Preventive Services Task Force come out with recommendations then the Sec of HHS tell us to ignore them. Will private insurers ignore them?

Let’s talk about cosmetic surgery, according to the physician groups, in a survey done of people who are planning on having cosmetic surgery in the next two years, 60% reported a household income of $30K to $90K, 40% of the 60% reported incomes of $30K to $60K, this is the middle class and insurance does not pay for it. While some of the procedures may be considered elective by some, it is in the eye of the beholder and who is to make that distinction, the doctor, the patient or the government? Another bad idea.

Why are women being targeted? I thought this was all about giving women more access to health care, many of the changes in regulations are definitely positive, but what the government gives with one hand, it seems to take away with the other.

With all the chatter and perhaps now “ twitter” about health care reform, one area has gotten a lot of attention and it is an issue that is near and dear to the Society for Women’s Health Research—that is comparative effectiveness research (CER).

Since it is accepted knowledge that women and minorities were not, and are still not, to the degree they should be, included in clinical trials, there is much we are learning and still do not know about sex and ethnic differences in terms of prevention, diagnosis and treatment. My concern with CER, therefore, is how differences in effectiveness and treatment will be determined. Several genetic, hormonal, environmental factors influence health and disease in particularly different ways in women and men. Because of that, CER must study both men AND women and analyze fully any sex based difference in disease prevalence, treatment options and procedures. Those decisions must correlate to real world experiences.

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