Signal Boost: Reproductive Health Technology Healthcare in Our Hands #ECinOurHands

RHTP healthcare tumblr_static_tumblr_piccyRecently, the Reproductive Health Technologies Project launched its new Tumblr-based campaign, Healthcare in Our Hands, “The place to celebrate and explore the new status of emergency contraception.”  The site invites visitors to submit a photo of themselves with Plan B in their hands (or submit their stories about NOT having trouble getting EC). The RHTP says “your submission will help build RHTP’s map of where Plan B One-Step has been spotted on the shelf nationwide! You can also keep up with the campaign online by following the hashtags #ECOTC and #ECinOurHands on social media.”

 

As I describe in my book, the RHTP has been a leader in using the web for distributing information about emergency contraception and other reproductive technologies.  The first version of the emergency contraception website, launched in 1995, was one of the first health information sites on the World Wide Web.  More recently, the organization has entered into the arena of Web 2.0 and set up a Facebook page, joined Twitter, and now Tumblr, to disseminate its message, as well as collect stories from users.  Since I’m a historian interested in digital humanities, I wonder what will happen to this user-generated content?  Will it be preserved?  Should it be?  What will we do with it?

Also, from the perspective of the women’s health movement, it’s interesting how the phrase “in our hands” is being used inintoourownhandsbooks this context. In her book, Into Our Own Hands, Sandra Morgen explores how the women’s health movement “shifted power and responsibility from the medical establishment into women’s own hands as health care consumers, providers, and advocates.” Frequently, feminist health activists and drug makers were adversaries — e.g. Barbara Seaman‘s classic expose, The Doctors’ Case Against the Pill, and the DC feministsdemonstrations by members of DC Liberation (left) at the congressional hearings on the Pill in 1970.

In my current research project, I’m looking at how (to paraphrase Boston Women’s Health Book Collective co-founder Susan Bell) feminist health activists “came to grips” with the technoscience of contraception.   At a conference on New Birth Control organized by Planned Parenthood in 1990, Judy Norsigian described “new era of cooperation between pharmaceutical firms and women’s groups.”

Emergency contraception was one example of how feminist health activists and industry came together to sponsor a new birth control technology.  I wonder, though, how much this fulfills the Second Wave feminist goal of putting healthcare “into women’s hands.” What do readers think?

What’s Wrong with Right-to-Know Breast Density Laws

via Our Bodies, Our Blog

As part of their ongoing discussion of the about routine mammogram screening for breast cancer, OBOS mentions the complicating  issue of breast density.” Dense breasts have less fat and more glandular and connective tissue. While some women’s breasts become less dense and more fatty as they age, other women’s breasts remain relatively dense. Why does this matter? Having dense breast tissue makes it harder to obtain an accurate reading of mammograms. It also increases a woman’s risk of developing breast cancer. However, questions remain about what women should do with that information. In fact, recent research suggests that actual risk of death from breast cancer is not increased for women with denser breast tissue.”

So far, so good.  What surprised me is OBOS’ position on “right-to-know” laws that mandate physicians share this information with patients.

“Despite a lack of certainty about how dense breast tissue affects health outcomes, a handful of states have mandated that providers discuss breast density with women. On April 1, California will become the fifth state with a breast density notification law in place. Similar bills have been introduced in other states.

At the federal level, the Breast Density and Mammography Reporting Act was introduced in Congress in 2011, but never made it out of committee. It, too, would require that women be told about breast density, the correlation with cancer, and that they might benefit from supplemental screening tests.”

Since the OBOS’ history is rooted in fighting medical paternalism, I’m puzzled as to why they would oppose efforts to provide women with MORE information.   This issue also hits home because I’m “dense” (i.e. have dense breast tissue).  Because Connecticut has a right-to-know law and a law mandating health insurance coverage for additional screening, my additional sonograms have not cost me anything but time.  Not every woman has these kind of health care benefits, but that’s no excuse for keeping women in the dark about this issue.  Sure these added tests are inconvenient and nerve wracking but it’s better than having cancer.

Now, one would think that radiologists would be all over these laws because it means they would get more  income, right?  Well, it turns out that the American College of Radiology (ACR) opposes right-to-know laws, because, among other things, it would “cause anxiety” in patients and they wouldn’t know how to interpret this data. In a reply to these objections submitted at the National Mammogram Quality Assurance Advisory Board FDA Hearing November 4, 2011, the Institute for Health Quality and Ethics stated:

“There are thousands of medical professionals, researchers, and awareness advocates who have done tremendous work towards advancing the science of breast cancer, from detection to cure. We respect the work that has been done in this field and the many individuals who have dedicated their lives to this commendable pursuit.

However, there is a very real danger here for the ACR and other organizations (equipment manufacturers and prominent breast cancer awareness organizations) which have benefited financially from years of ubiquitous mammogram screening programs. Some of the awareness campaigns and recommendations to women overstate the effectiveness of mammography overall, and completely neglect to inform women of the limited benefits of mammography in dense breast tissue.
Withholding this information from millions of women, many of whom could prevent their premature deaths and years of painful treatment for late stage cancer, calls the motivation of these organizations into question.”

Since I spend a lot of time looking at FDA records for my historical research, I decided to look at the rest of the transcript for this advisory committee meeting.  The testimony from breast cancer survivors, including the founders of the patient advocacy organization Are You Dense, reminded me of the women who protested at the 1970 Senate Hearings  on the Pill.  For example, here’s an excerpt from the testimony of Lynne Farrow from Breast Cancer Choices:

“After the dense breast disclosure was vetoed in California, one of the reasons given was disclosure would cause anxiety in women. I can tell you what causes anxiety in women. Being lied to causes anxiety. Not disclosing that mammography is severely limited in its diagnostic abilities causes anxiety. Not being offered other means of detecting cancer causes anxiety. We are grown women. Our lives are at stake. We don’t want any bureaucrats or insurance companies denying us information because we might get anxiety. We’ll be the judge of what causes anxiety.”

Right on!  What’s wrong with a woman’s right-to-know?  I’d rather have TMI than not enough.

Update:  In reply to a comment I made at OBOS, Rachel writes:

“Thanks for your comments, everyone, and for the added links. Heather, speaking only for myself as an individual – absolutely patient engagement and advocacy is a good thing, but in this case it’s not clear that these laws actually do anything to save women’s lives, and may really just subject them to more and costly tests and interventions. There’s nothing really evidence-based we can tell women to actually do in response to the information. So unless the laws require telling women in the form, “Hey, you have dense breasts, but we don’t really know how to follow up on that, and it probably doesn’t make a difference in terms of your survival,” they’re probably not that helpful. Peggy’s post has a nice exploration of those concerns, by the way. Thanks for commenting.”

Rather than clog up the OBOS comment section, I’ll reply to Peggy’s post here.  One of her chief complaints is the law “violates the free speech of physicians.”  She suggests that it might not be a bad idea for radiologists to file a free speech lawsuit.  This bothers me since as the Institute for Health Quality and Ethics report indicated, “free speech” for radiologists includes withholding material medical information from female patients.  The report argues “the continued resistance of the ACR and other organizations to providing this material medical information to women has begun to seriously undermine the faith that women have in our medical establishment.” I wrote on Peggy’s blog, “Informed consent is the cornerstone of modern medical practice. It wasn’t that long ago that physicians withheld information from patients (especially women) “for their own good.” Too much information is better than none at all.”

 

Signal Boost: Speakout against age restrictions on over-the-counter #emergencycontraception #fem2

MAP flyer final-2via National Women’s Liberation.  The New York chapter of NWL will hold a speakout on January 22, 2013, in front of the Health and Human Services office at 26 Federal Plaza, New York, NY, to demand unrestricted access to the Morning-After Pill.  According to their press release, “we are holding our speakout on the anniversary of Roe v Wade because we believe that all women and girls should have access to all tools that enable us to control our reproductive lives.”

Members of this group have been fighting against age restrictions on over-the-counter emergency contraception since January 2004, when they “led the Morning-After Pill Conspiracy Coalition to show the injustice of the restriction on the MAP and to show that woman are the real experts when it comes to birth control.  On February 15, 2004, we began a civil disobedience campaign where 4,500 women signed a pledge promising to give a friend the MAP in defiance of the FDA’s prescription only requirement.  In January 2005, nine if us were arrest’s at the FDA’s headquarters as part of a larger protest of the FDA’s inaction.”

It’s nice to see the return of this group of activists. As I describe in my book.  the Morning-After Pill Conspiracy was inspired by the grassroots activism of the women’s liberation movement of the 1960s and 1970s: In an interview, one of the group’s founders, Annie Tummino said,  “We speak out and engage in civil disobedience. Our goal is to send the message that women are the experts on our bodies and lives.” MAPC used a variety of direct-action techniques to protest the FDA and the Bush Administration’s stance on emergency contraception. They held consciousness-raising sessions; speak outs in major cities; and committed various acts of civil disobedience including passing along emergency contraceptive kits to women without a prescription.

march4-04fMost emblematic of their ties to Second Wave feminist organizing were their actions at the March for Women’s Lives Washington, DC on April 25, 2004. The group held a mini-rally where a dozen women “testified about rushing around trying to get the Morning-After Pill after a condom broke during sex, about the prohibitive costs associated with a doctor’s visit, and about the tragicomic idea that anyone can get a doctor’s appointment in twenty-four hours, especially starting on a Friday or Saturday night.” In defiance of “unjust” prescription laws, the group flung boxes of Plan B® into the crowd. They also invited spectators “to join them in signing the Morning After Pill Conspiracy pledge to defy the prescription requirement (and break the law) by giving a friend the Morning-After Pill whenever she needs it.”

A group of physicians from the Association of Reproductive Health Professionals’ Reproductive Health Access Project contributed to this display of feminist direct action by bringing their prescription pads and freely writing prescriptions for emergency contraception for any woman who wanted one. According to MAPC member Jenny Brown, these doctors “were illustrating a point which was repeated over and over in the FDA’s advisory hearings–no physical evaluation or instruction from medical professionals is needed to safely and effectively use this medication.” Members of MAPC declared they “were proud to follow in the footsteps of feminists like Margaret Sanger, who passed out information on birth control when it was illegal to do so, and suffragists who were arrested for voting, to showcase how unjust the laws were.” Like the feminist activists who protested against the abuse of women subjects during the 1970s, MAPC members held a sit-in at FDA headquarters in January of 2005, where nine of their members were arrested for blocking access to the FDA, “just like they were blocking women’s access to birth control.”

Members of the MAPC members then filed a lawsuit, Tummino, et al. v. Hamburg with the Center for Reproductive Rights, the Association of Reproductive Health Professionals, and National Latina Institute for Reproductive Health.  From the lawsuit and feminist organizing, the FDA agreed to approve Plan B for women 18 and older without a prescription, in August 2006.  In March 2009- the FDA was ordered to make Plan B available to 17 year olds and to review its decision to deny a “Citizen’s Petition” filed by 60+ women’s health and rights organizations.  In February 2012, the MAPC took the FDA back to court based on its continued failure to act on removing scientifically unsupported restrictions on the MAP.

To support these efforts of NWL, you can attend the rally, sign their petition demanding the FDA and HHS to stop carding for emergency contraception, “like” them on Facebook, and forward their press release to other activists.

Signal Boost: Everyday Health infogram on Free Birth Control and Abortion rates

everydayhealth.com-124via Everyday Health.  The infogram at left used data from the four-year Contraceptive CHOICE Project, a study by researchers at Washington University School of Medicine in St. Louis. This study followed more  than 7500 participants who were free to choose, with all costs covered, from a range of contraceptives. The researchers then examined the contraceptive failure rates of various methods.  The key findings were that  “Women who used birth-control pills, the patch or vaginal ring were 20 times more likely to have an unintended pregnancy than those who used longer-acting forms such as an intrauterine device (IUD) or implant.” The difference in effectiveness was even more marked for women under 21 who used  the pill, patch or ring. Their risk for unintended pregnancy with these methods, as compared with long-acting reversible contraceptives (LARCs), was almost twice as high as for older women.

The results of the study showed a substantial drop in the abortion rate compared to the national average, and a drop in birth rates among young women.

Hopefully this will tip things in favor of insurance coverage for contraception.

Day of Action on Emergency Contraception #ECOTC

Last year, I wrote of my disappointment that HHS Secretary Kathleen Sibelius overruled the FDA’s decision to make emergency contraception available over-the-counter with no age restrictions.

The Reproductive Health Technologies Project has started a campaign to convince Secretary Sibelius to reconsider her decision.  Their goal is to deliver a petition with at least 50,000 signatures to Secretary Sibelius on December 7th.  The petition reads:

“Women’s health, including the ability to determine the timing and spacing of pregnancies, should not be subject to politics. After more than a decade of medical research, the Food and Drug Administration (FDA) determined emergency contraception (EC) is effective and safe enough for access without restriction. Doctors recognize EC as an important component of reproductive health care, allowing women a second chance to prevent pregnancy when a primary contraceptive method fails. In December 2011, Health and Human Services (HHS) Secretary Kathleen Sebelius overruled the FDA and restricted access to EC. We urge Secretary Sebelius to revisit the evidence and remove the restrictions, placing women’s reproductive health above politics.”

If you agree, sign the petition.