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Summer 2018

The Women’s Health Activist FEATURE STORY: PAGE 4 Brightness Among the Clouds: Positive Women’s Health Efforts at the FDA

Volume 43, Issue 3

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IN THIS ISSUE Director’s Message.....2 A Watchful Eye on Off-Label Drug Use....3

By Eliana Kosova

The Network Celebrates the 11th Annual Barbara Seaman Awards Benefit..........................6 Young Feminist...........8 NWHN in Action.........9 Rx for Change........... 10 Since You Asked!....... 11 Snapshots.................. 12

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DIRECTOR’S MESSAGE Words Matter By Cynthia Pearson

Cynthia Pearson is the Executive Director of the National Women’s Health Network.

“The women we celebrated and recognized at our Event exemplify the courage that’s so badly needed right now. Their advocacy for women’s health hasn’t been stopped by threats, opposition, or prejudice.”

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“Words matter.” That’s how I opened my remarks at the NWHN’s annual Awards Event. We’re living in a time when the words that doctors, nurses, educators, and patients use to talk about health care are being twisted — even censored. It takes a certain quiet courage to use the right words, which precisely meet people’s needs, when the tide pulls in the opposite direction. I want to highlight the courage of those who use the right words despite pressure to back down, because we’re going to need a lot more courageous individuals…and soon. Just days before our Event, the Trump-Pence Administration released proposed rules requiring clinics that receive Federal family planning funds to stop providing full information about all reproductive health options. Under the proposal, clinicians could help clients access pre-natal care, but would be required to give intentionally confusing information about abortion care. The NWHN will be fighting hard against this harmful proposal; watch for our #MoreThanaGagRule campaign. The women we celebrated and recognized at our Event exemplify the courage that’s so badly needed right now. Their advocacy for women’s health hasn’t been stopped by threats, opposition, or prejudice. Our honorees don’t shy away from using words to improve women’s health. We honored Sameera Quereshi, who provides sexual health and sexual violence prevention education to Muslim girls and women. She was met with outright hostility at first, but Sameera persisted, educating girls in Islamic schools and mosques, and won over the skeptics. We also honored Beverly Whipple, who co-founded a feminist clinic when she was 27 years old. Beverly lived and worked in Yakima, Washington, where abortion care was non-existent and the word “abortion” wasn’t spoken publicly. Over the decades, Beverly used the word “abortion” when talking about the clinic’s services, and built a strong network of independent abortion providers, first in Washington, and later across the county. Read about the Event and see photos on page 6. Other articles highlight the power of words. In “A Watchful Eye on Off-Label Drug Use,” Maddy McKeague and Sarah Christopherson explain potential harms when the FDA lets pharmaceutical companies encourage clinician prescription of drugs for off-label use. We’ve written about this before, but it’s time to highlight it again, so our readers know what to look out for in drug ads and their doctor’s offices. Negar Esfandiari’s “The Devil is in the Details” is an important article about microagressions, in her case the repeated mispronunciation of her name. Negar vividly describes the physical impact of this experience. Her account highlights something public health researchers have known for years: that subtle but real discrimination, often expressed through words, has a measurable and negative impact on people’s health. In “Brightness Among the Clouds,” Eliana Kosova explains new FDA rules for testing and approving “internal condoms,” the updated name for “female condoms.” It’s time to start using more specific words that don’t make assumptions about the type of sexual activity people engage in. Count on the NWHN to understand the value of words to describe women’s experiences and health conditions, relay accurate health information, and keep fighting for women’s rights.

NATIONAL WOMEN’S HEALTH NETWORK • A Voice for Women, A Network for Change™


A Watchful Eye on Off-Label Drug Use

National Women’s Health Network

By Maddy McKeague and Sarah Christopherson

Washington, DC 20005-3459

Because every product carries some risk, patients need good clinical data to separate a product’s true effectiveness from its placebo and nocebo effects, to make well-informed decisions. A drug that works no better than a placebo and has serious side effects is a drug to avoid. That’s why the Food and Drug Administration (FDA)’s approval process should thoroughly weigh a new drug or device’s risks against benefits that have been scientifically demonstrated in clinical trials. This is vital because too few post-market studies are ever completed, and it can be difficult to take even dangerous products off-market once approved.1 For example, the FDA took two decades to lower the approved dose for women of the sleep aid Ambien, and only after numerous cases showed a link between taking the prescribed nighttime dose and traffic accidents the next day. In everything from anesthesia to aspirin to antihistamines, drugs approved for one target population can have very different side effects in another.2 So, it’s critical to get the approvals right the first time, which requires testing for the right use at the right dose in the right group. This is even more important when a product is prescribed for a very different use than its original one. A drug that poses moderate to serious risk is more likely to be approved for a serious illness like cancer than for a non-life-threatening ailment like hair loss. A product’s intended use and target population directly shape benefit-risk calculations. As the NWHN noted in testimony before the FDA in 2017, if a pharmaceutical company can win approval for a high-risk product to treat a serious illness in a small group of people, then market it for mass consumption for less-serious conditions, the original benefit-risk calculation becomes meaningless. Thus, the time to ensure that drugs or devices work in a target population for a specified use is before they hit the market, not after. Yet drug- and device-makers have continued to push for more and more freedom to market products “off-label,” promoting products to groups and for uses that were never approved — maybe never even tested at all!

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The NWHN supports clinicians’ right to prescribe products off-label for a different population, dosage, or use outside of FDA guidelines, giving them freedom to fine-tune treatments to patients’ needs or adjust to research advances that have overtaken regulation. But, financial incentives for clinicians are — or should be — very different from those of drug- and device-makers. If companies can skip comprehensive and potentially costly clinical trials and go straight to off-label promotion, they save significant time and money at our expense. The real-world harms are wellknown, particularly for women, people of color, and the elderly — groups already likely to be excluded from clinical trials. For example, in the 1980s, drug-makers claimed, without evidence from randomized trials, that offlabel use of hormone therapy during the menopausal transition reduced cardiovascular and Alzheimer’s disease risks. The NWHN championed the first large clinical trial to assess these claims; the Women’s Health Initiative debunked these alleged benefits and found that some forms of hormone therapy increased breast cancer risks. Off-label promotion exposed hundreds of thousands of women to unnecessary risks, and many died. Drug- and device-makers are pushing to promote their products off-label under the guise of First Amendment free speech protections, capitalizing on a 2012 Second Circuit ruling that manufacturers can engage in off-label promotions that are “truthful and non-misleading.”3 Citing free speech, bills allowing off-label promotion have been introduced in Colorado, Mississippi, Wyoming, and Missouri; Arizona and Tennessee have passed laws allowing off-label promotion.4 Meanwhile, Big Pharma now has a sympathetic fox guarding the henhouse in the form of Alex Azar, the Trump Administration’s Secretary of Health and Human Services (HHS). As HHS general counsel during the second Bush administration, Azar oversaw the government’s investigation of Eli Lilly for illegally marketing its schizophrenia drug for off-label use by vulnerable seniors. Then he jumped to working for Lilly, helping settle its charges for a fraction of its CONTINUED ON PAGE 9

202.682.2648 fax www.nwhn.org Online women’s health column: www.nwhn.org/since-you-asked Facebook: facebook.com/TheNWHN Instagram: thenwhn Twitter: @theNWHN, @RWV4HealthCare Our Mission The National Women’s Health Network improves the health of all women by developing and promoting a critical analysis of health issues to influence public policy and support consumer decision-making. The Network aspires to a health care system that is guided by social justice and reflects the needs of diverse women. Board of Directors Mia Kim Sullivan, Chair Kira S. Jones, Action Vice Chair Kimberly Robinson, Administrative Vice Chair Tiffany Reed, Treasurer Nadiah Mohajir, Secretary Ndidiamaka Amuth-Onukagha Mae-Gilene Begay Dazon Dixon Diallo Joy Eckert Meredith P. Field Kentina Washington Leapheart Anu Manchikanti Gomez Karen A. Scott Francine Thompson Cynthia Pearson, ex officio NWHN Staff Cynthia Pearson, Executive Director Pat Antonisse, Finance Manager Evita Almassi, Communications and Digital Marketing Manager Sarah Christopherson, Policy Advocacy Director Erin Evans, Office Manager Susan K. Flinn, Newsletter Editor Alyssa Llamas, Federal Policy Associate Michelle M. Lockwood, Development Director Kalena Murphy, Regional Field Manager for Raising Women’s Voices The Women’s Health Activist® is a publication of the National Women’s Health Network. We’d like to hear from you. Please email questions or comments to editor@nwhn.org. Please send change of address notices to membership@nwhn.org.

Volume 43, Issue 3 Summer 2018 ISSN no. 1547-8823 ©2018 National Women’s Health Network

The Women’s Health Activist®

Volume 43, Issue 3

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Brightness Among the Clouds: Positive Women’s Health Efforts at the FDA By Eliana Kosova

In our current political climate, each day brings new attacks on reproductive health. Between the Trump-Pence Administration’s attacks on access to birth control and Congress’s continual efforts to curtail abortion care, we are in an uphill battle when it comes to reproductive freedom. When Scott Gottlieb was tapped as Commissioner of the Food and Drug Administration (FDA), the NWHN opposed his nomination due to his ties to Big Pharma and lack of commitment to women’s health. Recently, however, we have welcomed the FDA’s support as the agency processes a number of pending decisions that would give power back to women and other marginalized people. Right now, two key cases involving the internal condom and the Population Council’s new vaginal ring await FDA approval. Reclassification of “Female” Condoms On December 4, 2017, the FDA issued a proposal to change the single-use female condom’s classification from Level III to Level II, and rename it the “internal condom.”1 The NWHN and other women’s health advocates have been pushing for these changes ever since the FDA approved and set guidelines for the FC2 female condom in 2008. The FC2 female condom is a modified version of the first female condom, Reality, also known as FC1, which was approved in 1993. Now, the FC2 is the only internal condom available in the United States. The implications of this proposal are as crucial today as they were a decade ago. The internal (or female) condom

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is a non-hormonal contraceptive that is similar to the external (or male) condom. This condom is inserted inside the vagina or anus. When the internal condom is used vaginally, it can be inserted up to eight hours before sexual activity and it protects against sexually transmitted infections (STIs), including HIV/AIDS. (There is a lack of research on the internal condom’s effectiveness when used anally.) Unlike the “male” version, the internal condom is worn by the receptive partner. Because it is the first barrier method with HIV protection that can be controlled entirely by the receptive partner, the internal condom has huge implications for STI/HIV and pregnancy prevention. The internal condom is 75% to 82% effective in typical use, and 95% effective with perfect use.2 Although there is little difference between these two types of condoms, the FDA regulates them very differently. The male condom is classified as a Level II product, which requires a lower-level of regulation and scrutiny. The internal condom is currently regulated as a Level III product, on par with medical devices like pacemakers. This unnecessary distinction in classification has increased the price of internal condoms, created a barrier to additional companies producing the device, and hampered innovation in design. While countless brands of male condoms have been approved for sale in the U.S, Veru’s FC2 internal condom is only the second type of internal condom that has ever been approved by the FDA. Recently, Veru decided to take FC2 condoms off of store shelves

and make them available exclusively through prescription. The company argues doing so will ensure that health insurance will cover the costs of internal condoms, thanks to the Affordable Care Act’s (ACA) mandated birth control coverage. The move, however, highlights the FDA classification’s impact on consumer choice: because of the internal condom’s Level III classification, the decisions of a single company can eliminate an entire contraceptive and STI/HIV prevention option for thousands of people who lack health coverage. This is why the reclassification of the condom is so crucial. The Level III classification creates barriers to empowering receptive partners to take charge of their sexual health. The FDA proposal’s second element, renaming the product the “internal condom,” is also critical and welcomed by the NWHN. Degendering the product name makes it more accessible to a larger number of people — including people who use it during anal intercourse,3 and members of the LGBTQ community — since the term “female condom” reinforces the flawed notion that all women have vulvas and vaginas, and that all men have penises. The FDA’s proposals will help ensure that all people, regardless of their gender identity or sexual orientation, have the medical information they need to lead healthy and safe lives. New Contraception Option In other contraceptive news, a vaginal ring developed by the Population Council is waiting for the FDA’s approval. This new vaginal ring is unique in that it includes a new progesterone derivative, Nestorone®, in combination with ethinyl estradiol, a hormone that has been used in previous vaginal rings. The combination of Nesterone® and ethinyl estradiol is intended to reduce side effects, compared to other vaginal rings on the market today. While popular vaginal rings such as the NuvaRing require users to obtain a new vaginal ring each month,4 Population Council’s vaginal ring “require[s] [...] only self-administered insertion and removal 13 times a year,”5 and lasts the entire year. The year-long vaginal ring also does not need to be refrigerated. The new ring is, thus, more environmentally friendly than the current version, which is appealing to many users.

NATIONAL WOMEN’S HEALTH NETWORK • A Voice for Women, A Network for Change™


And, the new ring offers opportunities to address some of the problematic aspects of long acting reversible contraception (LARCs) such as intrauterine devices (IUDs) and implants. LARCs are very popular because they are covered under the ACA and offer long-term pregnancy protection with a single action, the initial insertion of the device. Although LARCs offer a unique set of benefits, women’s health advocates are concerned that LARC promotion could turn into coercion, becoming just the most recent in a long line of population control methods targeted at specific groups of women (i.e., women of color, low-income and uninsured women, indigenous women, immigrant women, women with disabilities, and people whose sexual expression is not respected).6, 7 (See the NWHN-SisterSong Joint Statement of Principles on LARCs at: www.tinyurl.com/LARCprinciples.) A huge issue with LARCs centers upon their removal. Although covered under the ACA, women (particularly women with inconsistent health coverage) have experienced limited options for getting LARCs removed.8 And, “even insured women may face resistance from health care providers if they are perceived as wanting to remove an IUD or implant too early.”9 Because users themselves can both insert and remove the new vaginal ring, this problem can be prevented. The new vaginal ring is, however, not perfect. During a year-long study, experimenters found that the vaginal ring was less effective in “women with body weight > 80 kg,” or about 176 pounds.10 A decrease in contraceptive protection in women over a certain body mass index (BMI) is not uncommon among hormonal birth controls, and is problematic. A link between high BMI and low socioeconomic status could limit the usefulness of the vaginal ring to marginalized communities, which is even more problematic since LARC coercion impacts them the most.11 Next Steps While final decisions about both the internal condom and the vaginal ring lie with the FDA, the NWHN will continue to advocate for equality and inclusivity in matters of reproductive health. Our campaign to relabel and reclassify the internal condom celebrates how much progress we have made in our effort to right past

wrongs. When the FDA’s internal condom proposal was released, the NWHN submitted comments to the FDA and issued a call to action to our members, urging them to voice their support. Moving forward, our advocacy around the new vaginal ring will continue to prioritize the needs of those who are marginalized and vulnerable.

Eliana Kosova is the NWHN Health Policy Fellow

References are available from info@nwhn.org.

TRIBUTE GIFTS The National Women’s Health Network thanks our members for their generous donations. Amy Allina In Celebration of Lynn Paltrow

Ellen Leopold In Honor of Cindy A. Pearson

Juliana and Steven Boerio-Goates In Memory of Josephine Boerio

Vicki Lucas In Honor of Bridget L. Kajs

Charlene Cerridwen In Memory of Laura Duggan

Vicki Lucas In Honor of Chelsea L. Kajs

Helen Conroy In Memory of Dan and L. Conroy

Rhonda Miracle In Memory of Agnes Pearson

Anne Dal Vera In Honor of Polly D. Vera

Terry Moon In Memory of Margaret Littmann

Marcy Darnovsky In Celebration of the National Women’s Health Network staff

Paula Newcomer In Honor of Rebecca Leonard

Marilyn A. Ellsworth In Honor of Nalini Goyal Adriane J. Fugh-Berman In Memory of Helen RodriguezTrias

Denise Pawlukiewicz In Honor of J Lovano Debby A. Phillips In Memory of Barbara Kolb Jo Reichler In Honor of David Goldblatt

Jennifer German In Celebration of Barbara (Babi) J. Charnak Anderson

Lenore Rodah In Memory of Andrea Friedman

Judith Gibson In Celebration of Sarah Gibson

Marian Sandmaier In Memory of Toni Sandmaier

Mary Jo Hazard In Honor of Sally J. Rynne

Lois (Lisa) Semmens In Honor of Emma Slibeck

Susan R. Hester In Memory of Mary-Helen Mautner

Betty E. Shave In Memory of Betty Boehm Shave and Kathyrn Griffith Boehm

Karen Hicks In Honor of Leonore Tiefer Harriet Kanstroom In Honor of Ginny Berkowitz

Diane Steinfink In Memory of Celia Goodman Susan Wind In Celebration of Anna R. Wind

Gayle A. Kaplan In Memory of Beatrice B. Kaplan This list reflects gifts received through May 11, 2018. If your name is missing, incorrectly listed, or misspelled, please accept our sincere apology, and contact our Development Department at 202.682.2640.

The Women’s Health Activist®

Volume 43, Issue 3

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Guest Speaker Silvia Henriquez and Honorees Beverly Whipple and Sameera Qureshi.

The Network Celebrates the 11th Annual Barbara Seaman Awards Benefit On June 4th, Network members and supporters gathered at the Whittemore House in Washington, DC, for the 11th Annual Barbara Seaman Awards for Activism in Women’s Health. The event celebrated the Network’s achievements while recognizing the work of two remarkable women, Sameera Qureshi and Beverly Whipple. Tiffany Reed, treasurer of the Network’s Board of Directors, served as the emcee for the event, and started the impactful evening by stating, “I want you to think about the groups of people you are helping, such as low-income women, women of color, immigrant women, young women, members of the LGBTQ community, and any other women whose voices are not yet heard by others. The keyword being ‘yet.’” The Network’s Executive Director, Cindy Pearson, joined Tiffany in welcoming guests to the Awards Benefit. She spoke about the power of words and how they can affect the lives of others, for better or worse. With the 2018 elections approaching, Cindy encouraged all the attendees to use their words to stand up for women.

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“We must continue to speak out against injustice and tell others to join us,” said the lifelong women’s health activist. Network Board Member Anu Manchikanti Gomez presented the Award for Activism in Women’s Health to Sameera Qureshi, MS, Director of Sexuality Education and Training at HEART Women & Girls. HEART is the only national non-profit organization dedicated to promoting sexual health and sexual violence awareness in Muslim communities through health education, advocacy, research, and training. Sameera develops curricula and programs, provides community needs assessments, facilitates trainings with adults and youth, and supports institutions in creating policies and procedures on sexual violence. “I still remember the first time I facilitated a sexual health lesson,” shared Sameera. “It was a class of 5th-grade girls. Between giggles, embarrassed stares, and awkward facial expressions, I saw a spark in their eyes. That spark was one of empowerment.” Kira Jones, Action Vice Chair of the Board of Directors, presented the Award for Activism in Women’s Health

to Beverly Whipple, Co-founder of Cedar River Clinics. Founded by two 27-year-olds using their own money, the non-profit clinic system now serves more than 6,000 women in Seattle, Renton, and Tacoma, Washington. The clinics provide a myriad of needed care including elective abortion care services; services for LGBTQ folks; and a family planning fellowship program. She’s weathered both lawsuits and the eruption of Mt. Saint Helens (which threatened to close her first clinic) and testified before Congress. After 35 years, Beverly retired as Executive Director, but continues to be a women’s health activist as a consultant helping other abortion providers ensure that their work is sustainable. “I worked in abortion care because I believe that each individual woman should be able to decide what to do about her pregnancy based on the conditions of her life at the time,” said Beverly. In one of the most powerful moments of the evening, she declared, “We aren’t backing down. We won’t back down.” The evening culminated with a speech by Silvia Henriquez, Co-director

NATIONAL WOMEN’S HEALTH NETWORK • A Voice for Women, A Network for Change™


LEFT 2016 Lifetime Honoree Dr. Vivan Pinn with Sue Klein. RIGHT NWHN Staff and Interns.

Kristina Madarang, Alycia Hogenmiller, Sophie Krensky and Vi Nguyen listening as the past, present and future of women’s health care rights is celebrated.

Event guests Sterling Speirn and Adriane FughBerman. of All* Above All. A leading advocate for the elimination of public and private restrictions on coverage for abortion care, Silvia spoke about the Trump Administration and conservative Congressmen’s efforts to make coverage restrictions even worse. But, reproductive justice activists won’t let that happen, Silvia stated, adding, “Women, people of color and immigrants know what it’s like to fight against impossible odds.” “The future is ours to claim,” declared Silvia. NWHN has a history of bringing to light key and evolving women’s health issues, and did just that at the close of the evening. In a sober moment, Tiffany reminded the crowd that 46 people die each day from an opioid overdose. “We’re facing an epidemic and its hurting more and more women each day. So, the Network is going to do what we’ve done for the last 43 years — educate and advocate for women.” The NWHN prides itself in holding the FDA and Big Pharma accountable for the drugs and devices that hit the market. That’s why we need to work to stop addiction and death caused

by opioids, which heavily affect women. That’s why we’re going to raise awareness on the epidemic. Each guest received a copy of the NWHN’s recent opioid Fact Sheet, which is just the starting point for our actions on this critical women’s health issue. The NWHN will expand upon the Fact Sheet and create health information, a webpage, and a social media campaign. We’re going to make sure that women have the information and materials they need before they have surgery or pick up a prescription. Guests at the event helped get this project started, and there’s still an opportunity to contribute to this important project! Go to donate.nwhn.org and help us stop this epidemic. Each year, our awards event reminds us where we’ve come from, where we are, and where we’re going in women’s health care. It provides us with the opportunity to celebrate our accomplishments and commit to achieving even more. It reaffirms why we fight for women’s health care rights. We hope to see you at the 2019 Barbara Seaman Awards Benefit!

NWHN Board Members (Front, from left to right) Kira S. Jones, Kimberly Robinson, Anu Manchikanti Gomez, and Meredith Field. (Back, from left to right) Tiffany Reed and Joy Eckert. EVENT SPONSORS LEADER American Association for Justice WATCHDOG Barbara Gold and Stephen Gold Rep. Maxine Jo Grad Nueva Vista Group LLC INNOVATOR The Board of Directors of the National Women’s Health Network Feminist Majority Adriane J. FughBerman Physicians for Reproductive Health Planned Parenthood Federation of America Cynthia Pearson National Advocates for Pregnant Women Lisa Rarick, M.D. Carol Whipple and Meredith Compton Jane and Stacey Zones MENTOR Amy Allina Patricia Antonisse Avalon Consulting Black Women’s Health Imperative

The Women’s Health Activist®

Harvey and Naomi Cohen Kathie Florsheim Letita Gomez Judy Judd National Asian Pacific American Women’s Forum National Network of Abortion Funds National Women’s Law Center Steve Shapiro and Gail Brown Janet M. Stallmeyer Mariamne H. Whatley, Ph.D. Alice Wolfson Nancy A. Worcester, Ph.D. ADVOCATE Nancy N. Boothe Cedar River Clinics Feminist Women’s Health Center Chico Feminist Women’s Health Center Judith A. Costlow Clare Feinson Maureen Flannery Susan R. Hester Frances S. Liau Linda Mahoney Susan Molchan Judy Norsigian Vivian W. Pinn, M.D. Photos by Peter Cutts

Volume 43, Issue 3

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YOUNG FEMINIST

The Devil is in the Details: Microaggressions are a Public Health Issue By Negar Esfandiari As a woman of color, I’m no stranger to how deeply ingrained racism is in American society. From a young age, I was acutely aware of my “otherness,” whether it was because of my appearance, because I was learning English as a second language, or because I never saw myself represented in the media. But the biggest indicator by far was my name. I used to despise my name. It started in preschool, when I realized only my Iranian friends could pronounce “Negar” correctly. For years, my mom didn’t hear the end of my desire to go by names like Lily, Michelle, or Nicki. She only ever supported me, although I couldn’t yet grasp that rejecting my name was also rejecting our culture. As a three yearold, I already understood that these names were easier, more digestible. It felt like one of those picture puzzles that asked, “Which of these things does not belong?” But that thing was my name and, by extension, me. Over the years, I receded further into the shadows. People didn’t have to be mean about mispronouncing my name to alienate me, although some were. They were confused by its foreignness, similarity to the N-word, and often made marginalizing comments about it, even if they didn’t intend to. In high school, I decided to go by my nickname, Negi. Most people could get it after a few tries and I’d be less reminded of my “otherness” every time someone referred to me. I never spoke in class, so I wouldn’t give people the opportunity to realize I didn’t belong. But something funny happened when I got to college. It was common for me to tell my teachers I wasn’t comfortable speaking in class, choosing to lose participation points rather than draw attention to myself. But when I approached my firstyear writing professor with my usual proposition, she simply replied, “I’ll make a conscious effort to call on you so you feel less pressured to speak up on your own.” I was shocked that someone went

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the extra mile to make space for me. People’s unwillingness to understand the context, pronunciation, and importance of my name had coached me into a silence that physically affected me. I spent entire classes thinking of something to say, sweating, almost hyperventilating, and obsessing over one sentence. I’d vomit in the bathroom because I thought the only way to release tension was to make myself sick. When I started new classes, I had panic attacks during attendance, waiting for professors to pause and furrow their brows at what was inevitably my name. Every new person I met, I had to prepare to explain myself. Why would my parents name me that? Where was it from? I didn’t exist until I could answer those questions. One afternoon, during my senior year, I was waiting for my first screenwriting class to begin. I’d wanted to take it since freshman year, and finally scored a spot. When the professor spit out what felt like the millionth mispronunciation, I quickly said, “It’s Negi.” Instead of making a note and moving on, the professor, a White man, paused and stared at me. “Negi,” he said, “is that your gangster name?” Everyone uncomfortably laughed. Without letting me respond, he quipped, “I bet at a school like this, it’s not really politically correct to have a name like Negar.” I sat there, dumbfounded and embarrassed, contemplating if my anger and frustration were actually valid. Transported to freshman year, where I would spend hours waiting to throw up, I couldn’t defend myself. And no one else did, either. When people make dismissive or ignorant comments about parts of my identity, they’re committing a microaggression. Racial microaggressions are defined as “brief and commonplace daily, verbal, behavioral, or environmental indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative racial slights and insults toward people of color.”1 Because microaggressions are smaller-scale than what we envision as outright racism, we don’t recognize how these instances of invalidation actually lead to detrimental health effects. It is death by 1,000 cuts. To the other students, that professor’s comments probably seemed like an awkwardly laughable moment. In reality, I faced that in every single space.

I thought if I dropped the class I’d be letting him win, but if I stayed, I wouldn’t be prioritizing my own health. Just recognizing I deserved more, I felt years of repression and resentment start lifting off my shoulders. The emotional labor required for me to take up space started to seem more achievable, although it was still constantly being called into question. Since sharing that experience, I’ve learned I’m not the only one in this position. Both in my personal life and at the NWHN, I’ve come across many people of color who feel trapped by seemingly innocuous comments. I used to believe that good intentions negated any hurt or alienation resulting from microaggressive interactions. However, agency—be it physical, mental, or emotional—starts with simple acts of validation. To recognize racism’s concrete impact on people of color’s health, we have to stop treating people of color like they’re overreacting to bias that’s displayed through microaggressions. I go by my full name now. I correct people when they’re wrong. I don’t laugh at their insensitive jokes. I find ways to deal with anxiety’s physical manifestations. I have wonderful friends who understand my relationship with my name, and amazing parents who’ve supported me through my whole journey. They trusted me to come back to my name in my own time, allowing me to foster a love and appreciation for my heritage that’s stronger than ever. But, not everyone gets to this point; in sharing my experience, I hope to demonstrate that details really do matter. When someone takes the extra time to learn my name’s pronunciation, ask if they’re saying it right, or is interested in its connection to my culture, I feel like I can stop holding my breath. And, when people tell me hearing my story gives them courage, I’m reminded that I not only deserve to take up space, but can help others do it too. References are available from info@nwhn.org.

Negar Esfandiari is a graduate of the George Washington University, where she studied English and Women’s, Gender and Sexuality Studies, and conducted research on microaggressions as symbolic violence. She was the NWHN Communications Intern for Spring 2018.

NATIONAL WOMEN’S HEALTH NETWORK • A Voice for Women, A Network for Change™


NWHN in Action Raising Women’s Voices (RWV) Last year, we updated you about our bidirectional role in the national coalition to protect Medicaid and the Affordable Care Act (ACA). We share national strategy, talking points, and materials with our 30 regional coordinators (RCs) in 29 states and, in turn, we share the RCs’ perspectives as women, women of color, LGBTQ people, immigrants, and more with national groups. Thus far in 2018, congressional Republicans have shown little appetite for taking up another round of ACA repeal-and-replace efforts. In December, they repealed the individual mandate, driving up premiums — as even former Trump Health Secretary Tom Price has admitted — in order to help pay for tax cuts for corporations and the ultra-wealthy. But the tax bill likely represents the high-water mark of what the GOP will be able to pass through a closely divided Senate. Even a bipartisan package to shore up ACA markets stalled this spring under the weight of GOP-led poison pills that would have gutted coverage for abortion care (discussed more below). But, while Congress has moved on, the Trump administration has been hard at work imposing Trumpcare through regulation. Instead of tracking dramatic late-night votes on the Senate floor, our attention has shifted to the less sexy, but no less serious, administrative fights that are underway. The administration is trying to gut essential health benefits like maternity care and mental health care; push healthy people out of ACA markets and into cheaper junk plans that disintegrate when they’re most needed; bring back health care discrimination on the basis of gender, gender identity, sexual orientation, and preexisting conditions, including rape and domestic violence; and impose new bureaucratic red tape (under the guise of “work requirements”) designed to push eligible people out of Medicaid. There may be little we can do to stop some of these regulations from moving forward, unfortunately. But, with your help, RWV is raising public awareness about what these regulations really mean for women: higher premiums for worse coverage, and a looming public health crisis as millions of people lose coverage altogether. As always, stay up-to-date by

signing up for the RWV newsletter at www.raisingwomensvoices.net under the “Get Connected” tab. Challenging Dangerous Drugs and Devices (CDDD) Led by NWHN’s policy fellow, Eliana Kosova, we have continued to highlight the policy issues around better screening for and treatment of osteoporosis. We’ve examined the work of prominent scientists and societies in the field, and reached out to patients and doctors to expand our knowledge of emerging screening and treatment methods. Our team also tracked a number of pharmaceutical companies in the process of developing uterine fibroid medication. This research culminated in a fact sheet that followed the FDA approval process of Allergan’s Esmya and provided patients with up-to-date information about advances in the field of uterine fibroid medication as a whole. We also created a new Fact Sheet highlighting women’s increased risks of developing an opioid dependence even when using their medication as prescribed, and describing alternative pain management options. (You can find these fact sheets and more under the “Health Fact Sheets” tab on our website.) And we’ve been following nascent congressional efforts to regulate cosmetics while keeping an eye on any attempts by the FDA to expand what drug- and device-makers can market off-label without first proving safety and effectiveness. Securing Sexual & Reproductive Health & Autonomy (SRH) In January, we updated you about our role in fighting the administration’s attempts to undermine the ACA’s contraceptive coverage requirement — an effort which unites our SRH and RWV campaigns. And, in coordination with our allies in the All* Above All coalition, we have continued to be active in the multi-year effort to roll back Hyde Amendment restrictions on coverage of abortion care in public health insurance programs like Medicaid and the Children’s Health Insurance Program (CHIP). But, this spring, we found ourselves once again fighting GOP-led efforts to gut abortion coverage in private health insurance too. During passage of the ACA, abortion opponents sought to include the highly restrictive Stupak

Amendment, which would have blocked any private plan from covering abortion care if the plan received even one dollar of federal assistance. Resurrecting Stupak, Senate Republicans held bipartisan funding for the ACA hostage in an effort to make it impossible for any private health plan to cover abortion care. We pushed back hard against GOP spin in the press that the language was “merely a continuation of Hyde” and highlighted how radical and far-reaching the proposal really was. While the effort appears dead for now, it’s likely to come roaring back next year when a new Congress takes up ACA-related legislation. We also continued our work against contraceptive coercion with our partners at SisterSong. NWHN Executive Director Cindy Pearson joined SisterSong Executive Director Monica Simpson in Chicago this April to train over a hundred providers, funders, and advocates embarking on a new contraceptive access project. To learn more about the trainings we offer, check out www.nwhn.org/larcs. Finally, we’ve been active in two exciting advances in reproductive health technology, FDA approval of a new, long-acting vaginal contraceptive ring and FDA reclassification of the internal (formerly, female) condom. Check out the feature article in this newsletter to learn more.

A Watchful Eye FROM PAGE 3 profits from the scheme. With an FDA and HHS friendly to corporate interests and permissive of off-label marketing, it’s up to women’s health advocates like us to keep a spotlight on the real issue: women’s right to know the medical products we use have been proven to be safe and effective for us. References are available from info@nwhn.org.

Maddy McKeague was the NWHN’s Spring Health Policy Intern

The Women’s Health Activist®

Sarah Christopherson is the NWHN Policy Advocacy Director

Volume 43, Issue 3

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Adriane Fugh-Berman, MD, is a professor in the Georgetown University Medical Center, and director of PharmedOut, a GUMC project that promotes rational prescribing.

Rx for Change: Throw Away Your Opioids Adriane just had dental surgery and the surgeon provided a prescription for Tylenol with codeine. When she told him that opioids were not better than over-the-counter (OTC) painkillers for dental pain, the surgeon argued, “But it’s such a weak opioid.” And then he said, almost to himself, “Well, I guess it does turn to morphine in the gut.” That’s true: about 10 percent of codeine is metabolized to morphine and, while codeine is one of the weaker opioids, it’s still an opioid, and should not be prescribed unnecessarily. Doctors and dentists regularly prescribe opioids when they are unnecessary, and they prescribe too many pills even when the drugs are useful. In 2016, one out of five Americans received an opioid prescription. That’s way too many pills! Patients tend to save extra pills, often in their medicine cabinet, because they seem to be inherently valuable. But, here’s why you should always dispose of opioids rather than keeping them: 1. You may be fostering addiction. Other people — friends, relatives, teenagers, visitors — can take them out of your medicine cabinet. You don’t want to be an inadvertent supplier of opioids to someone with an opioid use disorder or, worse, start someone down the road to addiction. Some people develop an opioid overuse disorder after taking just a week’s worth of opioids. And, 46 Americans die every day from an opioid overdose.1

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Summer 2018

2. You shouldn’t be dosing yourself, or anyone else, with opioids. While opioids are useful for acute pain or end-of-life care, consumers should not be dosing themselves. You should only take opioids while under a provider’s care. The risks are just too high. Both patients and doctors tend to see opioids as “the good stuff.” But, in addition to being addictive, opioids also increase your risk of respiratory depression and heart rhythm problems, and suppress your immune system. Many opioid users also suffer from severe constipation, even with low-dose opioids. And, other drugs do a better job than opioids at managing pain. A new study found that opioids were no more effective than nonopioid medications over 12 months for improving pain-related function in people with moderate to severe chronic back pain or pain from hip or knee osteoarthritis.2 And, opioids caused more side effects — mainly nausea, vomiting, and drowsiness. Opioids are not the good stuff. The truth is that, for acute pain conditions, taking high doses of a nonsteroidal anti-inflammatory (NSAID) along with acetaminophen (i.e., Tylenol or generic) works just as well for most people. For the first few days after surgery or trauma, a painkiller should be taken regularly, even if the person is not experiencing bad pain. NSAIDs not only ratchet pain down, they also reduce inflammation, which prevents a cascade of pain chemicals. That can

Charlea T. Massion, MD, is a family physician and specialist in hospice and palliative care medicine. She is the Chief Medical Director of Hospice of Santa Cruz County and also teaches physicians about worklife balance and career development.

make a big difference in the weeks after an injury or surgery. It’s probably even a good idea to take NSAID before surgery, although that makes most surgeons nervous, because they believe it increases the patient’s bleeding risk. This risk is exaggerated; several studies have shown there is no increase in serious bleeding risk when NSAIDs are used before surgery.3, 4, 5 Acetaminophen (Tylenol and others) is a fairly weak painkiller on its own, but it reduces some pain chemicals and enhances the effect of anandamide, a cannabis-related mood-enhancing chemical made by our own bodies. When combined with an NSAID, acetaminophen packs a powerful punch. Over-the-counter NSAIDS include aspirin, ibuprofen (Advil, Motrin, and others), and naproxen (Naprosyn and others). Common prescription NSAIDs include ketorolac (Toradol and others), diclofenac (Voltaren and others), celecoxib (Celebrex), and indomethacin (Indocin). Combining the opioid oxycodone with ibuprofen, on the other hand, doesn’t add much value. One study tested ibuprofen alone vs. ibuprofen in combination with 2.5 mg, 5.0 mg, or 10 mg of oxycodone.6 Only the 10 mg oxycodone combination was better than the others after 2 hours; at 3–6 hours, there was no difference in pain among any of the groups. Those who got oxycodone, though, did have more nausea, vomiting, and drowsiness. Over-prescription of opioids is what has caused this opioid epidemic. If your doctor or dentist wants to

NATIONAL WOMEN’S HEALTH NETWORK • A Voice for Women, A Network for Change™


give you an opioid prescription after surgery or injury, ask for a non-opioid alternative, and try that first. For acute pain, taking 400–600 mg of ibuprofen with 600 mg acetaminophen every 4–6 hours for 3 days or so is an excellent treatment. And, get rid of those opioids in your medicine cabinet. The best way to do so is through a take-back program; most pharmacies and some doctors’ offices will dispose of opioids, and more and more communities offer take-back programs (see: https:// takebackday.dea.gov/). Please don’t flush drugs down the toilet, as they go directly into the water supply; drugs cannot be filtered out. While we’d rather people not throw pills into the garbage, because they end up in landfill and can poison wildlife or get washed into the water supply, disposing of drugs in the garbage is better than flushing them. If there is no convenient takeback program near you, it’s better to mix your pills with goopy garbage and throw them away, rather than keep them in your residence. (Don’t throw away fentanyl patches; these should always be folded in half so the adhesive sticks to itself, and taken to a pharmacy for proper disposal.) Reducing the supply of opioids in people’s homes — both by not using opioids and by disposing of them properly — is a key contribution to ending the opioid epidemic! References are available from info@nwhn.org.

COMMON OPIOID MEDICATIONS INCLUDE • Codeine with acetaminophen (Tylenol 3, Tylenol 4) • Fentanyl (Duragesic, Actiq, Fentora, Subsys, Abstral) • Hydrocodone • Hydrocodone with ibuprofen (Vicoprofen) • Hydrocodone with acetaminophen (Vicodin) • Hydromorphone (Dilaudid, Exalgo) • Ibuprofen and oxycodone (Combunox) • Meperidine/pethidine (Demerol) • Morphine sulphate (MS Contin) • Oxycodone (Oxycontin) • Oxycodone and acetaminophen (Percocet) • Oxymorphone (Opana) • Tramadol (Ultram) • Tramadol and acetaminophen (Ultracet)

Since You Asked! Question: Why is the maternal mortality rate so high for Black women in the United States? Answer:

April 11–17, 2018 was the first ever Black Maternal Health Week (BMHW), organized by the Black Mamas Matter Alliance to “amplify the voices of Black mamas, women, families, and stakeholders.”1 BMHW’s goal is to raise awareness about the persistent impact of social disparities — including poverty and racism — which impact Black women’s health and lead to higher rates of maternal morbidity and mortality. Maternal health has vastly improved in most parts of the world, with maternal mortality rates falling 44% between 1990 and 2015.2, 3 Sadly, the U.S. is not part of this trend; here, maternal mortality rates have increased, and the rate (28 maternal deaths for every 100,000 live births) is on par with that found in Afghanistan and El Salvador.4, 5, 6 Black women suffer disproportionately. Compared to women of other races and ethnicities, and regardless of educational level, Black women in the U.S. are less likely to receive good prenatal care and are more likely to suffer from a pregnancy-related injury or death.7, 8 Black women are up to four times more likely to die from pregnancy-related causes than White women, and more than twice as likely to experience severe maternal morbidity.9 Racism is a major driver of Black women’s health challenges, affecting access to high-quality health care and increasing their personal health risks. The chronic stress induced by racism is the primary factor in accelerated biological aging of Black Americans and in racial disparities

in maternal health, heart disease, hypertension, obesity, and other health risks.10, 11, 12, 13 Black women are forced to cope with an insidious combination of sexism and racial bias that impacts their health. In a medical setting, this can include not having their experiences and pain taken seriously; not being able to access prevention and diagnostic services, including needed services before, during, and after pregnancy; and not receiving proper treatment for their health conditions. Campaigns like BMHW are helping to raise awareness about this problem. There has recently been increased coverage of racism’s impact and Black women’s difficulty in being taken seriously by health care providers. These include widespread coverage of tennis player Serena Williams, who almost died from pregnancy-related complications, and Eric Garner’s daughter, Erica, who died shortly after giving birth.14 Beyond raising awareness, however, addressing this problem requires a holistic and multi-faceted approach to address both racism and its impacts. As Black Mamas Matter states: “To prevent pregnancyrelated deaths and sustainably improve maternal health, states must make transformative investments in the health and well-being of Black women and girls throughout the life course, including in the areas of housing, nutrition, transportation, violence, environmental health, and economic justice.”15 References are available from info@nwhn.org.

Online women’s health column: www.nwhn.org/since-you-asked The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images, and information, contained on or available through this website is for general information purposes only.

Correction: In the January issue article on osteoporosis, we incorrectly identified a key drug, “alendronate sodium,” as “adrenolate.” We apologize for the error.

The Women’s Health Activist®

Volume 43, Issue 3

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Printed on 100% postconsumer waste paper. Minimally bleached and printed using soybean ink. The first broad demographic study of trends in gender-affirming

surgeries in the U.S. found the number of operations occurring each year has risen significantly. Researchers analyzed National Inpatient Sample (NIS) data on 37,827 inpatient visits, 10.9% of which involved gender-affirming surgery. The number increased four-fold between 2000 and 2014, from 3.87 to 14.22 per 100,000 patients. This may stem from expanded insurance coverage for the procedures and increased acceptance of individuals seeking them. Almost every U.S. medical association now describes transitionrelated surgeries as “medically necessary” for transgender people’s physical and mental health. The percentage of patients paying out-of-pocket for gender-affirming surgeries declined from 50% in 2000–2005, to 39.4% in 2014. The Centers for Medicare and Medicaid Services (CMS) ended its 33-year ban on covering the surgeries in 2014; since then, CMS coverage increased three-fold, from 25 to 70, between 2012 and 2014. As coverage expands, the demand for qualified surgeons to perform them likely will, too. JAMA Surgery, February 2018

The prestigious National Academy of Sciences has released a new, comprehensive Consensus Study Report on the safety and quality

It affirms, complications are rare for the four major types of abortion (medication,

of U.S. abortion care. once again, that

aspiration, dilation and evacuation, and induction). It

also confirms that abortion does not increase women’s risk of secondary infertility, pregnancy-related hypertensive disorders, preterm birth, breast cancer, or mental illness.

The report notes that most abortions can be safely provided in office-based settings, as well as by advanced practice clinicians (i.e., certified nurse-midwives, nurse practitioners, physician assistants). The Committee noted that state regulations “create barriers to safe and effective care,” and are often not based on medical evidence. For example, restrictions affecting medication abortion access (like requiring a doctor to physically provide the drug) do not improve patient safety. National Academies of Sciences, Engineering and Medicine, March 2018

The U.S. has abysmally poor maternal morbidity and mortality rates, particularly among women of color. It is known that cardiovascular problems, like heart failure, are a leading cause of maternal mortality, but little research has been conducted on heart failure (HF) among women at various stages of the pregnancy continuum (i.e., during pregnancy, childbirth, and post-partum). Using the 2001 to 2011 Nationwide Inpatient Sample, researchers analyzed more than 50 million hospitalizations of women aged 13–49 to assess HF’s prevalence, correlates, and outcomes. Most pregnancy-related HF occurred postpartum (60%), followed by during delivery (27.3%), and during pregnancy (13.2%). This is striking because postpartum encounters represented only 1.5% of all pregnancy-related hospitalizations. Women with a HF diagnosis were more likely to experience adverse outcomes including death, stroke, and renal failure. Researchers recommend increased efforts to identify women with increased HF risk during hospitalization, and to engage them in surveillance programs before discharge, to support them before the usual 6-week follow-up visit. Circulation: Heart Failure, January 2018

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