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November/December 2019

The Women’s Health Activist FEATURE STORY: PAGE 4 Vyleesi: Another Attempt to Profit from Women’s Health

Volume 44, Issue 6

®

IN THIS ISSUE Director’s Message.....2

By Maggie Gorini

12 Ways to Support the Network.................3 Join Our Board!..........5 Women & the Opioid Epidemic: What Works and What Doesn’t..............6 NWHN in Action.........7 Young Feminist...........8 Rx for Change........... 10 Since You Asked!....... 11 Snapshots.................. 12

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DIRECTOR’S MESSAGE Health Care Advocates: We’re Not Each Other’s Enemies By Cynthia Pearson

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

“I’m glad that so many presidential candidates are fighting to improve the health care system.”

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I cheered aloud when I saw multiple presidential candidates raise their hand in response to the question: “Who here would abolish their private health insurance in favor of a government-run plan?”1 But, I wasn’t as happy later on, when some of these same candidates attacked each other, claiming that their opponent’s plan to expand access to health care would actually hurt people. Some candidates claim that other’s plans will result in dire outcomes: people losing insurance coverage; not being able to afford to see a doctor; losing the Medicare plan they like. I love arguing about health care — it’s part of why I love my job leading the NWHN. We argue with powerful people who are approving, marketing, and prescribing bad products all the time. Arguments between people with different approaches to expanding health care access are different, however. I firmly believe that every politician who advocates for progressive health reform wants more people to have health care, not fewer. I trust that anyone who can muster enough support to get her or his plan through the legislative process will ensure that no one loses coverage. I also believe that advocates for “health care for all” can simultaneously want the best possible approach and work for an approach that is achievable in the short-term. For example, the NWHN supports single-payer health care. We also support the Affordable Care Act (ACA). We mobilized women and LGBTQ folks to support health reform in the years leading up to the historic ACA vote in 2010, and we continue that work today. We knew the ACA wasn’t perfect. It leaves too many people out. It doesn’t control drug prices. It has very limited controls on the prices insurers charge. Yet, we’re proud to have been part of the biggest expansion of health care access in a generation. Thanks to the ACA, millions more people have health care. We also understand that there are lessons to be learned from other countries’ approaches to health care financing. Single-payer is the least expensive way to cover everyone, and results in excellent outcomes in countries like Australia and Sweden. Other wealthy, industrialized counties have found different ways to ensure every person has access to excellent health care; some of those systems are a mix of government oversight and private insurance (Germany). Access to abortion care isn’t dependent on the health care system, either: countries with government-financed health care can embrace abortion care (France) or exclude it (the Republic of Ireland, until the historic 2018 referendum legalizing abortion). How about the debate that’s raging now? Proposals to expand access span the spectrum from a rapid move to a single-payer, Medicare For All system, to incremental steps that build upon the ACA and Medicaid expansion programs. Is one result better than the other? Certainly. There’s no doubt that plans designed to include everyone are better than those that only help some people. Are people who support incremental approaches that will leave people out heartless? Are those who support “changing it all in a big hurry” unrealistic optimists? Neither! All of those advocates want to improve our current system. I’m glad that so many presidential candidates CONTINUED ON PAGE 11

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12 WAYS TO SUPPORT THE NETWORK

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Volume 44, Issue 6 November/December 2019 ISSN no. 1547-8823 ©2019 National Women’s Health Network

The Women’s Health Activist®

Volume 44, Issue 6

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Will it make me nauseated?

If only 8% experienced increased desire as a result of the drug — is it worth the possible side effects?

Can I take it if I take medication for anxiety?

Vyleesi: Another Attempt to Profit from Women’s Health By Maggie Gorini

In June, the Food and Drug Administration (FDA) approved bremelanotide (brand name Vyleesi) to treat a lack of sexual desire in premenopausal women.1 The NWHN advocated against the drug’s approval, and spoke in opposition when the approval announcement was made. Here’s why. Bremelanotide is designed to treat “hypoactive sexual desire disorder” on an “as-needed” basis. A woman takes it about 45 minutes before she expects to engage in sexual activity. The drug has to be injected, and comes with an auto-injector device. Bremelanotide works by affecting hormones in the brain, specifically by stimulating receptors for the hormone melanocortin-4.2 This hormone is involved with social and sexual behaviors, as well as other bodily functions. The mechanism by which bremelanotide actually influences desire is not known at this time. Does It Work? Bremelanotide’s effectiveness was evaluated in a controlled clinical trial of 1,202 18-to-56-year-old premenopausal women in stable relationships who reported having low or no desire for sex for at least 6 months, and had no other identified reason for their lack of desire (i.e., psychological, gynecological, or urological health concerns). The majority (86%) were white, 12% were Black, and 1% identified as a different

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race/ethnicity. These women were randomized to receive either 1.75 mg of bremelanotide or placebo, and then followed for 6 months. The women reported back about their increased levels of desire and distress over their lack of desire on a five-point scale, which ranged from “no/none” to “very high/almost always.”3, 4 The results were not impressive. On average, women who received bremelanotide reported an increase in desire of a mere 0.3–0.4 points on the 1–5 scale.5, 6 To put it another way, approximately 25% of the woman who received of bremelanotide reported an increase in desire of at least 1 point, compared to 17% of those taking the placebo.7, 8 That means that only 8% of the woman experienced a modest improvement in their level of desire as a result of the drug. The women’s distress about their lack of sexual desire were determined by patient-reported answers to a single question. Distress decreased modestly: averages were 0.3 points lower in the bremelanotide group than the placebo group.9 So, 35% of women taking bremelanotide experienced a reduction in distress of at least 1 point, compared to 31% of women taking the placebo.10 This means that only 4% of women felt less distressed as a result of taking the drug. The drug had no effect on the average number of satisfying sexual events reported by the women.

Are These Results Meaningful? The manufacturer claims that these results are clinically meaningful. From the limited data currently available, we can’t assess whether the women themselves felt the same. We do know that nearly 40% of the women in the bremelanotide group dropped out, compared to fewer than 20% of women in the placebo group.11 Researchers have stated that exit surveys indicate the women valued the drug, but the researchers have yet to report the results from the full group; only 242 women completed the exit surveys out of the 1,202 women who participated in the trial.12 It is also important to note that the homogenous population (i.e., majority white) limits how generalizable these outcomes are, and also limits our understanding of risks and common side effects. Side Effects & Complications One reason so many women may have dropped out of the bremelanotide arm is the side effects they experienced. Forty percent of those taking bremelanotide experienced nausea, for example.13 Other common side effects include vomiting, temporary skin reddening, injection site reactions, and headaches. Specifically due to reactions like these,14 18% of subjects taking bremelanotide dropped out of the study, compared to 2% of women taking the placebo. A very small percentage (1%) of participants reported experiencing skin and gum darkening; in about half of these cases, the darkening did not fade after they stopped treatment. Women with darker skin experienced this side effect more often than those with lighter skin.15 The drug increases the risk of high blood pressure. For this reason, the FDA label states that women shouldn’t take more than 1 dose per 24 hours, and shouldn’t take the drug more than 8 times a month, to reduce high blood pressure risks. And, the FDA recommends that those with uncontrolled hypertension or cardiovascular disease should not take the drug at all. The study also explored how the drug interacted with hormonal contraception and alcohol. Women using hormonal contraceptives and bremelanotide did not show a statistically significant increase in their level of sexual desire.16 According to a very small

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


controlled trial, drinking alcohol while taking bremelanotide doesn’t cause ill effects, which was tested using the equivalent of consuming three glasses of wine.17, 18 This is a notable improvement over a previously approved sex-drive medication. (The study was conducted in 12 men & 12 women; yes, half the group was men.) We lack information about how bremelanotide affects breast milk or the health of pregnant people, but no level of the drug has been deemed safe for pregnant people. Right now, we only have animal studies suggesting that extremely high exposures to the drug can lead to developmental impairments and other fetal harm (studies on pregnant animals showed harm at 125 times the human dose in mice, and at 16 times the human dose in dogs).19 Very limited data about the full clinical trial results have been published, raising significant questions. For example, hundreds of women who enrolled in the pivotal trials do not seem to be included in the company’s presentation of the results. It is unclear what happened to all of them, although we know some chose to stop after trying the auto-injector. In addition, we still don’t know the answers to other critical questions, including:

1. Is the increase in desire meaningful to someone who is distressed by her lack of desire? 2. Are the study results valid, since only 20% of subjects completed the exit interview? 3. Why did half as many women who were randomized to take bremelanotide (124 women) elect to take the drug after the trial ended, compared to the number of women who were randomized to the placebo (239 women)?20 4. What is the drug’s effect on women taking medications for high blood pressure, depression, and/or anxiety, all of which can reduce sexual desire? 5. What is the experience of taking the drug like for Latina, Indigenous or Asian women, who were not part of the study trial?

sufficient information for women to make informed decisions about whether the drug is safe or effective. Bremelanotide needs more scrutiny. Women need more information. The FDA had it in its power to accomplish both. We are frustrated that the FDA approved this product without providing women with the assurance they deserve that bremelanotide is safe and effective. Women deserve better. If you are worried about your level of desire, and wonder if your symptoms warrant intervention, we recommend considering other approaches to sexual satisfaction first, at least until more safety and efficacy data are available about this drug. If you choose to use bremelanotide, we strongly recommend following the guidelines in the FDA label.21 References are available from info@nwhn.org.

6. Should we be concerned that the researchers who conducted most of the studies on bremelanotide are largely funded by, and partners of, the sponsor company? The NWHN’s Recommendation We are disappointed by the FDA’s approval of bremelanotide and recommend that women avoid using the drug until we know more about its safety and effectiveness. We lack

Maggie Gorini was the most recent NWHN Policy Fellow

Nomination Deadline: January 8, 2020

Do YOU Want to Join the NWHN Board of Directors? Who wouldn’t? It’s election time again, and the National Women’s Health Network (NWHN) is inviting nominations for our Board of Directors. We are seeking candidates who understand the NWHN’s mission, support its goals, and are committed to the organization’s activist nature. We value diversity in race, class, age, sexual identity, and geographic location. We seek candidates with varied skills and experiences in women’s health. All applicants must be NWHN members. The NWHN Board of Directors both governs the organization and provides important input into its policy advocacy positions. Board members

are expected to participate in three to four weekend Board meetings annually. Some Board meetings are in person and others utilize video conferencing. Board members also fundraise, and serve on at least one Board committee. Terms last for four years. Meetings are held in various locations, including Washington, D.C. and California. For more information on Board responsibilities and to get a nomination form, please call the office at 202.682.2640 or visit the NWHN’s website at https://nwhn. org/board-nominations/. For a copy of candidates’ statements from past elections, see https://nwhn.org/2018board-candidate-statements/

If you know someone who would make a good Board member, or if you’re interested in joining the NWHN Board yourself, please send in a nomination! Forms are accepted by fax (202.682.2648), email (nwhn@nwhn. org), or regular mail (NWHN, 1413 K Street NW, 4th Floor, Washington, DC 20005). All nominations must be received in the NWHN office by January 8, 2020. Nominations received after this date will not be valid. All current NWHN members have the opportunity to vote for the new Board during the Spring 2020 elections.

The Women’s Health Activist®

Volume 44, Issue 6

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Women & the Opioid Epidemic: What Works and What Doesn’t By Maggie Gorini The opioid crisis is big news these days, and with good reason. In 2017 alone, there were 70,237 drug overdose deaths, two-thirds of which involved opioids.1 Accidental drug overdose is the leading cause of death in the U.S. among people under age 50.2 We need policymakers, insurers, voters, and practitioners to come together in a multi-pronged approach to prevent these tragedies. Yet for years, interventions designed to prevent addiction and opioid-related overdoses have been ineffective or downright harmful. Thankfully, that’s starting to change. For example, criminalizing opioid use for mothers and pregnant people backfires in ways that ultimately hurts children and mothers. When a pregnant person who is struggling with a substance addiction is arrested, held, and/or incarcerated, the disruption can lead to major ramifications for her and her family.3 Pregnant people risk losing their jobs, homes, and/or children when they are prosecuted for these charges, creating an enormous disincentive for them to seek medical care — including addiction treatment. And, these laws are disproportionately enforced against women of color and low-income women.4 The threat of criminal prosecution for abuse, neglect, or reckless endangerment of a fetus is not, it turns out, a viable way to help prevent people from using opioids.

significantly improved access to health care and helped low- and moderateincome people get substance abuse treatment. Expansion states need to keep making progress by covering a key opioid addiction treatment program called Medication-Assisted Treatments (MAT).7 MAT provides drugs — including methadone and buprenorphine implants8 — that help reduce withdrawal symptoms and cravings so people can overcome their bodies’ needs and further their recovery.9, 10, 11 MAT is most effective when people can get the services from a clinic daily, so even short lapses in insurance coverage can undo months of addiction maintenance. States need to keep working on ensuring that women have reliable, consistent health care and the services that help them get services, like childcare.12 Through our partners at Raising Women’s Voices for the Health Care We Need (RVW), the NWHN is working to expand Medicaid in the 14 states that have yet to do so. This will be a huge shift in ensuring that low- and moderate-income families have access to care — including addiction treatment.13, 14 Expanding Medicaid in all states and covering a larger number of people is vital to protecting women’s health, including access to addiction treatment programs.15 On the regulatory front, the U.S. Food and Drug Administration (FDA)

“States need to keep working on ensuring that women have reliable, consistent health care” The NWHN believes states should change their policies and decriminalize drug use for pregnant women. Treating substance abuse as the health concern it is rather than a criminal problem enables women to manage and overcome addiction.5 We support programs like the new Maternal Opioid Misuse (MOM) model to improve access to care for pregnant and postpartum Medicaid beneficiaries with opioid use disorder.6 Another vital change stems from Medicaid expansion under the Affordable Care Act (ACA). States that have expanded Medicaid have

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is shifting to a more active approach to addiction prevention efforts, but the agency can do more. The FDA has approved new “abuse-deterrent” (AD) opioid reformulations in an effort to prevent drug abuse but needs to address the fact that patients and/or their caregivers may mistake “abusedeterrent” to mean “less addictive,” which isn’t true. Patients may accept treatment regimens they believe to be less risky when, in fact, AD medications are often just as addictive as non-AD formulations. We want the FDA to be more vocal about AD formulations’ limitations, so people can

Opioid use disorder: A problematic pattern of opioid use leading to clinically significant impairment or distress. Opioid dependency: People who stop taking the drug have physical and psychological withdrawal symptoms (i.e., muscle cramps, diarrhea, anxiety). Opioid addiction: A chronic disease characterized by a compulsive, continuing need for the drug.

make informed decisions about their care plans. We also want the FDA to maintain its commitment to consumer safety. The FDA’s Innovation Challenge (IC) incentivized manufacturers to create diagnostic or therapeutic products to prevent pain and/or address addiction and abuse, and several new products have been rushed to market.16 Rapid responses have their benefits, but the FDA must not lose sight of consumer safety. The FDA should implement discrete, enforceable timelines for these products’ post-market studies, including patient-reported information about effectiveness. This is essential for providers and patients to have accurate safety and efficacy information about the drugs they take. We also want to see the FDA change its approach to preventing illegal online sales of these drugs. The agency has sent warning letters but has yet to impose criminal penalties against companies that sell opioids illegally online.17 It’s long-past time for the FDA to seek criminal and/ or financial penalties to discourage these activities. Insurance companies also need to adjust their approach to the epidemic. For too long, many insurers didn’t cover non-drug and non-opioid alternatives to opioid medications for pain, like physical therapy or counseling.18, 19, 20 The NWHN urges insurers to change their policies and support alternative treatments and limit the number of days an opioid prescription is covered for new patients. Doctors are starting to change how they treat pain management, as well. They are coming together to reevaluate which conditions and procedures actually warrant an opioid prescription and which do not. For

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


example, oral health professionals at Johns Hopkins University are working on strategic alternatives to opioids for some types of pain mitigation.21 Finally, communities are changing how people who have overdosed get helped by expanding access to naloxone. Naloxone is a drug that can help reverse an overdose by helping unconscious overdose victims to breathe again.22, 23 Traditionally, naloxone was administered by first responders, but those front-line professionals can’t always reach overdose victims in time. And, they may be more likely to give the drug to men who have overdosed than to women.24 Now communities are working to make sure naloxone is available when it’s needed and not just from first responders. For example, states are allowing pharmacists to prescribe naloxone25 and communities are placing naloxone kits in the AED cabinets found in public spaces like airports.26 These are just a few of the changes stakeholders are making to advance effective programs and policies to address the opioid epidemic. We are starting to recognize what works: focusing on evidence-based interventions rather than punitive ones, increasing access to the full range of health care services by expanding insurance coverage, and prioritizing people’s health over drugmakers’ profits. We need stronger political, financial, and regulatory will to support programs and policies that actually work, however. Only when all these elements are in place will we turn the tide of this epidemic and effectively address its devastating impact on women and their families. To find out more about effective responses to the opioid epidemic, see our Fact Sheets at https:// bit.ly/2WCD5fI and https://bit. ly/318fMfC. References are available from info@nwhn.org.

Maggie Gorini was the most recent NWHN Policy Fellow

NWHN in Action By Sarah Christopherson Raising Women’s Voices (RWV) Having failed to “defund Planned Parenthood” through their ACA repeal bills in 2017, the Trump-Pence administration has settled on the next best thing: driving Planned Parenthood — and numerous independent clinics — from the federal Title X family planning program. Title X helps low-income people access reproductive health care. First proposed in 2018, the devastating Trump rule has been in effect since August. Unless Congress blocks it, the rule will rapidly accelerate the administration’s efforts to shift taxpayer money from real clinics (forcing many to close) and give it to religiously affiliated fake clinics that lie about abortion and aren’t required to offer contraception. We’ve been working hard to compel Congress to take action before it’s too late. We’ve also continued our longterm fight against ACA sabotage, attacks on immigrant health care, and attempts to hollow out Medicaid through ‘work requirements’ that are intended to overload lowincome families with red tape. With the NWHN’s assistance, Raising Women’s Voices’ (RWV) 25 regional coordinators in 27 states have helped the larger movement to generate hundreds of thousands of public comments opposing Trump’s policies, raised media awareness about the attacks on our health care, and advocated for state-based policy responses. In many cases, we can’t stop bad rules from being issued, but we can help the courts block them from going into effect for as long as possible. Challenging Dangerous Drugs and Devices (CDDD) The products we use day after day, decade after decade, on our eyelids, cheeks, lips, scalps, underarms, and sexual organs should be as well-regulated as those we eat. But right now, they aren’t — with major consequences for our health. Toxic ingredients and contaminants in cosmetics and other personal

care products — like shampoo and conditioner, deodorant, makeup, baby powder, vaginal douches, lotion, body sprays and perfumes, hair dyes and straighteners — have been linked to ovarian and breast cancer, early onset of puberty, fibroids and endometriosis, miscarriage, poor maternal and infant health outcomes, diabetes and obesity, and more. With few exceptions, current federal law doesn’t require cosmetics and other personal care products sold in the U.S. to be approved by the Food and Drug Administration (FDA) before going on the market. Manufacturers aren’t required to list all of their ingredients, test their products, use good manufacturing practices to prevent contamination, or even recall products they know are dangerous. At the same time, litigation has exposed industry malfeasance stretching back decades. For example, we now know that executives at Johnson & Johnson were aware for years that their talc-based baby powder could be carcinogenic and tainted with asbestos, yet they continued to aggressively market that product to Black and Latina women. As a result of lax regulations, the cosmetic industry has been mostly self-regulated for over a century! Big businesses have made big money selling women products they know are harmful. The NWHN has long supported congressional efforts to give the FDA regulatory authority over personal care products. We’ve also advocated for a strong federal standard for unsafe ingredients that doesn’t impede access to the courts when consumers are harmed. For example, we’ve endorsed and helped shape legislation introduced in the Senate the last two Congresses. But in 2019, we significantly expanded our work to protect consumers from toxic ingredients CONTINUED ON PAGE 9

The Women’s Health Activist®

Volume 44, Issue 6

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YOUNG FEMINIST

My Grandmother’s Life Without Access to Safe Abortion By Julia Kagan I’ve always known my grandmother lost two pregnancies — she’s an extremely open person who’s comfortable sharing personal information. She loves to say that it’s important to talk about our bodies because they’re one of the only things the whole world has in common. Despite this openness about nearly everything, it didn’t dawn on me to get “deep” with her about her pregnancy losses until my sophomore year of high school. That was when my strong interest in abortion access and health care disparities started, and I realized how important it was for me to understand the story of someone I hold so close to my heart. While anti-choice legislation is sweeping the country, it’s important to remember that state-imposed restrictions have nothing to do with abortion’s legality on the federal level. For now, abortion is legal in all 50 states, and has been since the 1973 Roe v. Wade Supreme Court decision. My grandmother is one of the unfortunate people who experienced not being able to access a safe, legal, and necessary abortion pre-Roe. I want to document her story to help others understand the importance of legislation protecting the right to access abortion care. Her story is a reminder of why we must never go backwards when it comes to abortion access. Her story is part of what encourages me to keep going, even when pro-choice advocacy feels exhausting and frustrating. My grandmother has four children, all daughters, but was pregnant six times. Her first miscarriage occurred when she was only four months pregnant and hadn’t yet developed an attachment to what was growing inside her. In her mind, it wasn’t a baby yet — it was just a “blob.” That miscarriage was disappointing, but not devastating. The second time she lost a pregnancy, my grandmother was about five months when she felt her water break while she was inside a department store. Of course, she knew it was way too early to go into labor, so she went to her doctor right away. He said the pregnancy was not going to be viable anymore within about two

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weeks. She told me, “When I heard that, I didn’t want to continue the pregnancy; I was concerned the baby would have something wrong with it, but at the same time, I was becoming very attached to it.” She felt signs of life inside her — kicks and movements — for three more weeks, then a fourth. Her doctor said, “Who knows, maybe you’ll bring the pregnancy to term after all,” so she continued to hold out hope that her pregnancy would be viable. By the fifth week (over six months into her pregnancy) she knew — my grandmother says sometimes women just “know” what is going on with their bodies. She doesn’t know how to describe it, but she says, all of a sudden, there was no life inside her. She told my grandfather, “My baby just died.” She knew then that she didn’t want to have the baby; she didn’t think it would be born healthy. But, she had to continue the pregnancy; abortion wasn’t legal in Massachusetts in 1963. She went into labor extremely early, and had a very fast labor, after which she says, “Everything after felt heavy.” Doctors and nurses kept entering her hospital room and asking her to sign documents. One nurse said, “I have something for you to sign. We’d like to do an autopsy on the baby; its stomach wasn’t developed all the way.” My grandmother looked over the documents and felt a pang of sadness; the box for “M” was checked, and my grandmother knew she’d given birth to a boy. Back then, women who didn’t get to go home with their babies were on the same hospital floor as women who did. My grandmother’s heart broke when she heard other women who were holding their infants for the first time. She felt excruciatingly depressed and envious of the women who got to take their newborns home. “I could hear all the babies crying, and no one was going to bring me a baby,”’ she says. It just wasn’t fair; my grandmother should not have been in this situation in the first place; she should have been able to terminate the pregnancy when she knew in her heart what was going to be right for herself and her family. This loss was completely different from her first miscarriage. This one was devastating, because something was really taken away from her when it was too late. This time, it was a full-term baby she had to bury. She buried her baby in a Jewish cemetery; she says it was a relief to be able to do this, as it provided some closure, but the

experience was depressing just the same. My grandmother was strong — but she shouldn’t have had to be. She should never have been denied a medical procedure, a denial that ultimately lead to enormous distress and sadness. She knew that women understand their bodies — we are uniquely attuned to what’s happening inside of us, far more in tune than a law could ever be. My grandmother’s story mirrors the reality for most women who seek abortion care: 59 percent of whom already have at least one child.1 I firmly believe all people have the right to abortion care regardless of the reason, but it’s worth highlighting the stark difference between abortion opponents’ claims and reality. The opposition tries to make the conversation about “irresponsible women” using abortion as birth control; in reality, this situation is nonexistant. Women who have an abortion are making well-informed decisions about what’s best for their unique situations and life circumstances. Her story shines light on another issue of increasing importance to women’s health: the gradual destigmatization of miscarriage and stillbirth. While my grandmother is open about her experiences, there’s still a great deal of stigma about spontaneous pregnancy loss. Those who experience miscarriage or stillbirth often feel they’re at fault, or did something to cause the event. In reality, miscarriage and stillbirth’s causes are often unknown and difficult to prevent.2 Speaking out about miscarriage and stillbirth experiences helps others feel less alone.3 We know that, when people are denied abortion care, pain ensues. This happened before Roe, and it’s happening now, as pregnant people face difficulties accessing services that they know are right for them and their family. It’s time the world honors the intimate knowledge held by all women about their own bodies. References are available from info@nwhn.org.

Julia Kagan was the NWHN’s communications intern in Summer 2019. She is studying Psychology with a concentration in Women’s, Gender, and Sexuality Studies at Dickinson College.

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


NWHN in Action FROM PAGE 7

and contaminants in cosmetics and personal care products. As part of that work, we’ve been raising awareness about the dangers of talc in personal care products and advocating for House legislation requiring FDA oversight of the cosmetics industry. This June, we led a letter to the House Energy & Commerce Committee calling for strong standards that protect women’s health. As part of this process, we spent hours reaching out to and educating other organizations in the reproductive health and justice movements, ultimately gaining more than 40 national, state, and local co-signers — including many organizations hadn’t previously engaged on this issue. In September, we hosted a webinar with leaders from industry and the environment, women’s health, and reproductive justice communities to help consumers and advocates protect themselves and take action. If you missed it in realtime, you can watch the webinar at nwhn.org/unsafe-cosmetics, along with our materials on this issue. Personal care products aren’t the only dangerous product we’ve challenged this year. In late 2018, the makers of female libido drug flibanserin (brand name Addyi) threatened to take legal action against the NWHN unless we removed all of our on-line Addyi-related materials. We refused to be silenced or intimidated, though. In September, the company sent out a press release falsely claiming the FDA had removed warnings about taking Addyi with alcohol. The FDA quickly moved to correct the record, but not before the false information had spread through Addyi’s network of boosters. We were able to help get the word out to women: it’s still a good idea to “Pass on the Pink Pill — or Pass Out!”

Securing Sexual and Reproductive Health and Autonomy (SRH) This spring, in partnership with the National Institute for Reproductive Health (NIRH), we introduced a Toolkit for reproductive health activists responding to state contraceptive policy initiatives. The Toolkit builds on our 2016 Statement of Principles co-led with SisterSong, which addressed coercion in the provision of long-acting reversible contraceptives (LARCs). This summer, we and the NIRH held a webinar for activists that offered an overview of both reproductive coercion and our Toolkit. Of course, we continue to serve as a resource for activists, providers, and policymakers on increasing contraceptive access without coercion. All of our LARC materials, including the Statement and the Toolkit, are at nwhn.org/larcs. Other efforts to expand access to reproductive services include efforts that helped pass SB 24, firstin-the-nation legislation requiring campus health centers in the University of California and California State University systems to provide medication abortion. We don’t typically engage directly on statelevel policymaking, but successfully enacting SB 24 is huge progress in abortion access that may prompt other blue state efforts to improve access to this safe and effective way to terminate a pregnancy. Finally, in July, we discovered that the Office of Women’s Health (OWH) at the Dept. of Health and Human Services (HHS) had shuttered its women’s health helpline. (HHS’ office is separate from the FDA’s OWH.) We first attempted to meet with the Trump-appointed OWH director to discuss the closure, but to no avail. We then helped Senate offices draft and secure co-signers for a letter to HHS highlighting the helpline’s importance (particularly for women who lack Internet access) and asking for HHS’ plan to ensure that women’s health needs are met. We’ll keep you posted on the outcome.

The National Women’s Health Network thanks our members for their generous donations.

Kathryn Anastos In Honor of All Women Living With HIV Charlene Cerridwen In Memory of Laura Duggan Stephanie Clar In Celebration of Cricket Clar Helen Conroy In Memory of Dan and L. Conroy Adriane J. Fugh-Berman In Honor of Cynthia A. Pearson Gayle A. Kaplan In Memory of My Mom, Beatrice B. Kaplan Jane Petro In Celebration of Women protecting Women everywhere Margaret E. Roberts In Honor of Colleen McNicholas Lois (Lisa) Q. Semmens In Honor of Emma Slibeck Rose Stevens In Celebration of Women fighting for Women Miriam Struck In Honor of Mildred Struck

This list reflects gifts received through September 1, 2019.

If that weren’t enough, a brand new drug to target female sexual desire came on the market this year — with a whole new set of dangerous side effects. See the feature article for more about bremelanotide (brand name Vyleesi). Find out more at nwhn.org/ vyleesi-fact-sheet.

TRIBUTE GIFTS

If your name is missing, incorrectly listed, or misspelled, please accept our sincere apology, and contact our Development Department at 202.682.2640. Sarah Christopherson is the NWHN’s Policy Director

The Women’s Health Activist®

Volume 44, Issue 6

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Rx for Change: Mentioning the Unmentionable ­— Urinary Incontinence (UI)

Nancy Worcester and Mariamne Whatley are Professors Emeritae of Gender and Women’s Studies at the University of Wisconsin-Madison. They are long-time women’s health educators, writers, and activists who have both served on the NWHN’s Board.

By Nancy Worcester and Mariamne Whatley

Urinary incontinence (UI) is finally something women can talk about — and do something about. A new comprehensive study and a national meeting of UI researchers and other experts demonstrate widespread agreement that Kegel exercises and bladder training can improve UI symptoms for many women.1 It’s time to make UI a topic for women’s health activism! UI is prevalent, negatively impacts women’s lives, and has a range of treatment options — including some that are free, health promoting, without side effects, and very effective in improving symptoms and even “curing” UI. Yet, many people with UI fail to get help because their health care provider lacks the time, incentives, or training to address this issue. Instead of being informed about safe, effective treatments, consumers are bombarded by advertising and

Urinary Incontinence, the leakage of urine, is classified in several categories: Stress UI is when intra-abdominal pressure (caused by coughing, sneezing, or straining) causes leakage of urine. Urgency UI is a need to urinate so powerful and urgent that it may not be possible to get to a bathroom in time. Mixed UI is the presence of both Stress and Urgency UI.8

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November/December 2019

information about money-making products and procedures that have negative side-effects, health risks, and may not actually treat UI. People of all ages and genders can experience UI. The condition impacts 25% of reproductive age women, 50% of post-menopausal women, and 35% of men aged 65 and older.2 Among women over age 65, 54% report having “any” UI; of whom, 12% report their UI is severe, and 32% that their UI is moderate or worse.2 According to a longitudinal study of 40–65-year-old women reporting UI, 61% did not seek treatment. The most frequent reasons were: “UI not bad enough” (73%); “UI is [a] normal part of aging” (53%); and health care “provider never asked” (55%).2 Despite these statistics, a new systematic review and meta-analysis of UI studies confirms that there are simple and safe actions people can take to relieve UI.1, 3 The assessments reinforce that behavioral approaches (i.e., Kegel exercises and bladder training) are effective and should be considered the first line for addressing UI.1, 4 Professional organizations have consistently recommended this approach. The Women’s Preventative Service Initiative (https://www. womenspreventivehealth.org/) endorses UI screening for all women; screening guidelines like this are an important first step in addressing a health care issue because they encourage health providers to learn more about the topic and provide an

indication to patients that their health providers are ready to discuss the topic, as well.2 Kegel exercises — which involve contracting, holding, and then relaxing the muscles that stop urine flow — are important in strengthening and maintaining pelvic floor muscles.4, 5 If pelvic floor muscles are weak, it’s harder for the sphincter (the muscle surrounding the urethra that controls urine flow) to prevent urinary leakage when there is intraabdominal pressure. The systematic review and meta-analysis found that Kegel exercises improved symptoms in almost three-quarters of women with Stress UI, which is usually caused by weak pelvic floor muscles.6 Strengthening pelvic floor muscles can correct this problem, reducing Stress UI symptoms. Kegels are easy to learn; don’t take much time, so they can fit into daily routines; and are inconspicuous, enabling people to perform them in a variety of settings. Lifelong daily Kegels can maintain pelvic muscle strength and reduce UI risk. Kegels should not be done while urinating, although initially doing so may help identify these muscles. Even though many people learn to do Kegel exercises on their own, it is helpful to get instructions on technique, frequency, quantity, and any specific concerns from a health practitioner like a physical therapist. Bladder training is confirmed to be another effective first-line treatment, improving symptoms in more than three-quarters of women with

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


Urgency UI.8 Bladder training involves developing a schedule for urination and then gradually increasing the time between urination, so the body adjusts and can hold urine longer. Because there are no financial incentives for doing so, the health system could be much better at encouraging people to do pelvic exercises and bladder training to prevent or improve UI. So, it’s ironic that UI is a huge money-maker for UI product corporations. The worldwide adult UI market is rapidly expanding, from $5.7 billion in 2010 to 9.3 $billion this year, and is predicted to rise to $16 billion by 2024.7, 8 Using disposable UI absorbency products (pads, briefs, pull-ups) is the most prevalent strategy to manage UI, with around three-quarters of women with UI using such products daily.9, 10 These products range in type, quality, and cost, so women try a number of them and rely on information from retail outlets and advertisements, rather than getting advice and information from a health provider, which many would prefer.11 Many women use disposable menstrual pads for light UI, although these pads are designed to absorb slow blood flow, while UI products can better absorb

rapid urine loss.10, 11 These absorbent products must be changed regularly and used with caution to prevent both UI-associated skin problems and the risk of urinary tract infections (which can be caused by organisms from the vagina or rectum getting moved to the urethra or bladder).11, 13 The environmental costs of disposable UI products may be significant, as well. (While there has not been research on washable vs. newer disposable UI products, related research on baby diapers suggests there is no significant difference in the environmental impact of disposable diapers compared to home- or commercially-laundered diapers.12) In advocating for more attention to be paid to bladder health, it’s time to ask what price women and the environment pay for daily use of disposable products that do nothing to improve UI. It would be more effective for women, and better environmentally, to promote free, effective, and risk-free Kegels and bladder training. The most urgent cost to think about is whether using absorbent products contributes to women not prioritizing effective treatment for their UI.

We acknowledge the important work done by the Patient-Centered Outcome Research Institute (PCORI, www.pcori.org) and the Agency for Healthcare Research and Quality (AHRQ, https://www.ahrq.gov/) on UI. PCORI supported the systematic review by Balk et. al.13, 1 in partnership with AHRQ. We also thank PCORI for inviting us to the June 25, 2019 PCORI/AHRQ Urinary Incontinence Stakeholders Meeting, which provided invaluable research and discussions and inspired us to write this article. References are available from info@nwhn.org.

Director’s Message FROM PAGE 3

are fighting to improve the health care system. We should focus more on the palpable differences between those who would expand access more or less quickly, and those who want to strip away affordable health care (and access to abortion care) from millions of Americans. References are available from info@nwhn.org.

Since You Asked! Question: Can UTIs & Common Over-the-Counter Medications Mimic Dementia Symptoms? Answer: Recently, Kaiser Health

News reported1 an account of a woman in her late 60s with what appeared to be symptoms of early-onset dementia. She was having trouble focusing and her short-term memory was impacted — but she didn’t have dementia. Her symptoms were actually caused by something entirely different: the cumulative effect of taking several common over-the-counter (OTC) drugs. Specifically, she was taking anticholinergic drugs, which block acetylcholine, a chemical messenger in the brain. Common anticholinergic drugs include Benadryl, Congentin, Enablex, and Atropen. When this happens, patients should taper off the problematic drugs, gradually and under the supervision of a health care provider.

Otherwise, people risk experiencing negative symptoms, including jitteriness, dizziness, agitation, and confusion.2 Health care providers can recommend alternative therapies for patients who are experiencing dementia-like symptoms after taking these OTC drugs. Urinary tract infections (UTI) can also cause dementia-like symptoms.3 Many people have UTIs when they are young, but the symptoms can be very different in older women. General UTI symptoms include: pain or burning while urinating (dysuria); an urgent and frequent need to urinate (urinary urgency); feeling the need to urinate even when the bladder is empty; cloudy, bloody, or strange smelling urine; and pelvic pain.4 In older men and women, these symptoms are less common and a UTI can create symptoms such as delirium and confusion. Consequently, people (or their loved ones) may not initially recognize that they have a UTI, and think they’re experiencing dementia. It’s important to check out all

possible causes for what might look like dementia! 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.

The Women’s Health Activist®

Volume 44, Issue 6

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Printed on 100% postconsumer waste paper. Minimally bleached and printed using soybean ink. NWHN readers know taking menopausal hormone therapy (HT) increases breast cancer risk. A major new study by the Collaborative Group on Hormonal Factors in Breast Cancer suggests the risk may last longer than was previously thought. Researchers analyzed individual participant data from 58 prospective studies on the type and timing of HT use. Data indicate that 108,647 post-menopausal women in these studies developed breast cancer, 51% of whom used HT. Analysis of participant data indicates that every type of HT except vaginal estrogen was associated with increased breast cancer risk, and the risk increased with HT duration. Increased risk was observed not only among women taking HT for 5–14 years, but also among those taking HT for 1–4 years, a duration previously thought to be relatively low risk. Increased cancer risk continued more than 10 years after ceasing HT. The excessive risk was lower for women who took HT for less than one year. The researchers conclude that, for women of average

5 years of use of the most common form of HT, starting at 50, would cause breast cancer in 1 of every 50 users.

weight,

The Lancet, August 2019

Teenage girls are exceptionally vulnerable to physical and sexual abuse in their relationships. A new study examines how often teenaged girls face sexual violence and reproductive coercion

Young women who had recently experienced reproductive coercion had four times the risk of also having experiencing sexual and physical abuse as well.

Statins, which lower high cholesterol and can protect people from cardiovascular disease, are among the world’s most-prescribed drugs. Statins inhibit the liver’s ability to synthesize cholesterol. But, our bodies need cholesterol to do things like produce sex hormones (i.e. estrogen, testosterone). Since estrogen protects bones, researchers assessed whether statins might negatively impact bone strength and increase the risk of osteoporosis (weak or brittle bones). Using 2006–2007 health data from more than 7.9 million Austrians, researchers assessed outcomes among those who regularly took statins for at least 1 year. Results indicate that those who took lower doses (i.e., up to 10 mg of statins) had fewer cases of osteoporosis than expected, while those taking higher doses (i.e., 20 mg and more) had more cases. The higher the dose, the stronger the effect, even after controlling for age, weight, and other pre-existing conditions. Findings suggest a connection between high doses of cholesterol-inhibiting statins and a negative impact on bone strength., but are not conclusive. More research is needed to understand the link between statin therapy and increased osteoporosis risk.

Obstetrics & Gynecology, August 2019

Annals of the Rheumatic Diseases, September 2019

(“reproductive coercion” occurs when someone tries to influence a woman’s health, sexuality, and health care behaviors). Using data from 8 California school-based health centers, researchers assessed reproductive coercion among 550 sexually active girls between the ages of 14 and 19. The study, which examined data from 2012–2013, found that 17% reported physical or sexual relationship abuse; 17% also reported having experienced non-partner sexual violence. Twelve (12) percent of the young women reported experiencing reproductive coercion in the previous 3 months.

Profile for National Women's Health Network

The NWHN November/December Newsletter  

The NWHN November/December Newsletter  

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