NWHN in Action- November/December 2019

Taken from the November/December 2019 issue of the Women's Health Activist Newsletter.

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 long-term fight against ACA sabotage, attacks on immigrant health care, and attempts to hollow out Medicaid through ‘work requirements’ that are intended to overload low-income 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 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 real-time, 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!”

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. Bremelanotide (brand name Vyleesi) is designed to be used on an “as-needed” basis about 45 minutes before sexual activity is expected. It has to be injected (an auto-injector device comes with the drug) and affects brain hormones associated with social and sexual behaviors, and other bodily functions. Exactly how Vyleesi influences desire isn’t known.

Like Addyi, we have strong concerns that Vyleesi has limited benefit: only 8% of users experienced increased desire as a result of Vyleesi; it had no effect on the average number of satisfying sexual events; and it has significant side effects. Common side effects include nausea (40% of users), vomiting, skin discoloration, injection site reactions, and headaches. Find out more at nwhn.org/vyleesi-fact-sheet.

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, first-in-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 state-level 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.

Sarah Christopherson, MA, is the Legislative Director for the social justice campaign, Americans for Tax Fairness, and the NWHN’s former Policy Advocacy Director. Her 10 years working for Congress and her deep knowledge of health policy and consumer protection make her the NWHN’s issue area expert on federal health reform implementation and defense, drug and device safety and efficacy, and sexual and reproductive health.

Read more from Sarah Christopherson.