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The Newsletter ArchiveA Message From The Executive Director | Living with Rheumatoid Arthritis – Erin’s Story | (The Policy Pages) A Summary of Action | (Network News) | In Case You Missed It… | (Young Feminist) Exploring Sex Positivity: Lessons from a Feminist Sex Shop | (Since You Asked) Genital Herpes | (Study Snapshots) Breast Cancer Treatment Drug, Mental Health in Correlation to Reproductive Care and Intimate Partner Violence | Tribute Gifts
NWHN ValuesExecutive Director of the National Women’s Health Network
October is the traditional month when we are reminded that’s it is “Breast Cancer Awareness Month” and just about everything we will see will be bathed in shades of pink. Created in 1985, Breast Cancer Awareness Month was designed to raise awareness and funding for breast cancer research. Campaigns then, as some are now, were designed to:
Breast cancer is still the most common cancer in women worldwide, and the awareness campaign tradition has certainly stuck. The pink ribbon has become the worldwide symbol for breast cancer. But slapping the pink ribbon on products or resharing it on your Facebook feed isn’t enough.
The American Cancer Society estimates that this year, there will be nearly 2 million new cancer cases diagnosed and over half a million deaths. Of this number, over 300,000 people will be diagnosed with breast cancer. They report that the average risk of a woman in the United States developing breast cancer sometime in her life is about 13%. This means there is a 1 in 8 chance she will develop breast cancer. Early detection remains the key in fighting breast cancer. Today, as the Executive Director of this influential organization, I wanted to remind all of you that prevention, early detection, and treatment resources are available.
Many of the breast cancer resources available today are thanks to the National Breast and Cervical Cancer Early Detection Program (NBCCEDP). NBCCEDP provides free or low-cost breast and cervical cancer screenings for low-income, uninsured, and underinsured women in the US. The program is run by the Centers for Disease Control and Prevention (CDC). It is effective at detecting and treating breast and cervical cancer in women who might not otherwise be screened.
The NBCCEDP funds award recipients in all 50 states, the District of Columbia, and 13 American Indian and Alaska Native tribes or tribal organizations. It is the only nationally organized cancer screening program for breast and cervical cancer in the U.S. for disadvantaged and diverse populations who historically have not had adequate access to or have likely experienced other barriers to cancer screening.
Other resources that help with breast cancer prevention, early detection and treatment include:
As a breast cancer survivor, I didn’t always appreciate the “pinking” of everything. From socks to hair extensions, and everything in between, it brought up feelings of rage and fear because of my own misdiagnosis and the lack of information provided on dense breasts. But as survivorship data improved and because of the advances made in treatment, screening, and prevention, I have come to embrace the pinking of all things breast cancer awareness – especially if the messages are informative, raise awareness, and get people screened.
Get a mammogram. Know your risks. Reduce your risks.
-Denise Hyater-Lindenmuth, Executive Director
Real health stories from members to inspire, educate, and activate you.
Interview Granted by Erin Evans, NWHN Director of Operations
Edited by Adele Costa, NWHN Director of Communications
Rheumatoid arthritis, or RA, is an autoimmune and inflammatory disease that causes the immune system to attack healthy cells in the body by mistake, causing inflammation (painful swelling) in the affected parts of the body. RA mainly attacks the joints, usually many joints at once. According to the American College of Rheumatology, approximately 1.3 million adults in the U.S. suffer from RA, – and 75% of these people are women.
Erin Evans is one of these women. She was diagnosed with Rheumatoid Arthritis in 2017, and her experience is a testament to resilience and the power of self-advocacy. Below, she talks about her diagnosis journey, managing the condition, and the importance of understanding and supporting individuals with chronic illnesses.
***This interview has been edited for length and clarity***
I was diagnosed with Rheumatoid Arthritis in 2017, but the symptoms began in 2016, starting with pain in my neck and shoulders and eventually worsening pain in my hands.
Initially, my doctor dismissed my complaints of pain, attributing it to a psychosomatic manifestation of my anxiety. The pain progressively got worse, becoming so debilitating that I could barely wash my hair in the shower because of even that slight pressure on my fingers. Eventually, after several visits and me literally breaking down crying and begging in his office, my doctor ran tests and confirmed I had Rheumatoid Arthritis.
I’ll never forget the way he told me the news. He was like, “Turns out it’s not all in your head. You really do have RA!” I remember being so frustrated because I never thought it was all in my head – that’s what he clearly thought, and it cost me a year of unnecessary debilitation.
My treatment protocol started with steroids to tackle the pain. Then I was put on methotrexate and Humira, both of which suppress the immune system. I take Methotrexate in pill form once a week. I take Humira by injection once every other week and then also ibuprofen as needed for pain relief. Tracking side effects, keeping the medication cold, and remembering what I must take when it is an intricate balance, and maintaining a strict routine is crucial.
I’ve also learned that stress exacerbates RA, so I’m learning how to better manage stress and anxiety, which has always been a major challenge for me. Some of the non-medicinal ways I manage stress and RA are by taking daily walks, frequent hot baths, and maintaining a stretch routine.
The medications are expensive. Without health insurance, it would be extremely costly – in the thousands of dollars a month range. Thankfully, I have good health insurance, making these drugs affordable. However, for people without good insurance, I can’t imagine how they cope with this condition’s extreme pain. There are days, even with a solid treatment plan, that the pain is so bad I can’t work or do much at all.
The chronic pain is definitely the biggest factor for me. It affects everything I do. Living as well as I can with chronic pain means very carefully managing my energy, and constantly having to take precautions against flare-ups so the pain doesn’t consume me or become debilitating at an inconvenient moment.
If you’ve ever heard of “spoon theory,” that’s a great framework for beginning to understand living with chronic illness. Essentially, I start each day with a certain amount of energy, or spoons – and once those spoons are out? They are out – and I can’t do anything else no matter how much I may want to; the lack of energy is debilitating. What’s more, everyday things that well people take for granted, like repetitive typing, or opening jars (the grip takes a lot out of you), take way more spoons than most people think.
If you suspect you have Rheumatoid Arthritis, be persistent with your doctor. Trust your gut and what your body is telling you. For those diagnosed, listen to your body and allow yourself to rest when needed. It’s not about appearing weak; it’s about taking care of yourself.
Erin Evans is the NWHN’s very own Director of Operations. Erin lives with her partner and their two cats, whom she adores. She has a passion for traveling and wishes she had more time and resources to indulge in it more often.
Updates on how we’re making change at the highest levels of government.
The National Women’s Health Network works with members of Congress to improve the health and well-being of women across the life continuum. This article provides the highlights of our women’s health policy work. Please contact policy manager Kristen Batstone ([email protected]) with any questions or comments regarding the content.
In the 118th Congress, the Network’s top priorities include expanding access to family planning services, improving and diversifying perinatal and postpartum care, and increasing access to preventative screenings.
The Network is happy to see introductions and reintroductions of key women’s health legislation. You can learn more about key legislation the Network supports and why on our virtual bill tracker here. Other recently introduced women’s health bills include:
On September 13-14, the National Women’s Health Network joined allied organizations in an advocacy push on Capitol Hill. The aim of this effort was to ensure that extreme attacks against gender-affirming care and abortion are not included in the finalized package for the National Defense Authorization Act (NDAA). The House NDAA passed earlier this summer with several amendments that seek to eliminate essential health care services for transgender service members and their families. The bill also seeks to roll back new policies issued by the Department of Defense (DOD) that provide paid leave and travel assistance for service members stationed in states with anti-abortion laws on the books.
Approximately 150,000 transgender Americans have served or are currently serving in the U.S. military, National Guard, or Reserves. In fact, transgender Americans are twice as likely to enlist in the armed services than the general population. The anti-LGBTQ+ riders in the NDAA not only disrupt access to gender-affirming care for trans service members and their loved ones, but these policies create hostile environments that endanger the health and safety of those who seek to protect us.
The Network was also present on the hill to rally Members of Congress to support an amendment to the House NDAA that would expand access to contraception for service members and their families. Under the Affordable Care Act, millions of Americans are guaranteed access to contraception at no extra cost, but this benefit does not currently extend to military service members and their families. That means that non-active-duty service members and military families covered by Tricare must still pay a copay for contraception. The House-passed NDAA contains a historic provision that would waive co-pays for contraception for service members and their dependents, but the Senate version failed to include this provision. This is a bipartisan policy that has been passed many times, but consistently fails to make it across the finish line because Members of Congress frequently use it as a bargaining chip. We are counting on Congress to do the right thing, and finally afford service members and their loved ones the same access to full-spectrum reproductive health care as civilians.
On Wednesday July 14, the Network hosted a virtual event featuring Congresswoman Rosa DeLauro and JoAnn Pushkin from Dense Breast Info. Our speakers discussed how women with dense breasts are at higher risk for breast cancer, and yet face unnecessary and burdensome restrictions to diagnostic breast screenings. Dense breast tissue appears white on a mammogram just like cancer. This masking effect causes breast cancer to go undetected much more frequently in patients with dense breasts. For a more thorough examination women with dense breasts may need to undergo additional screenings like an MRI or an ultrasound. Currently, additional screening options are not covered by insurance, forcing women to pay high out-of-pocket costs for life-saving, necessary treatment.
Earlier this year, Congresswoman Rosa DeLauro and Congressman Brian Fitzpatrick introduced a federal insurance bill that expands coverage options for additional screenings at no extra cost for women with dense breasts and other high-risk populations.
If you missed the webinar or you would like to watch it again, you can catch it here. For more information about the Find it Early Act, dense breasts, and the importance of early detection check out Dense Breast Info’s website here.
First, a quick primer on the appropriations process: The president submits a budget to Congress for the federal government every fiscal year (October 1 through September 30). Congress must then pass 12 appropriations bills or pass a continuing resolution before the October 1st deadline to fund the government for the following year. The NWHN Policy Department is closely monitoring this process and fighting every day to make sure that programs promoting the health and well-being of women are backed with federal dollars. Here’s where we stand:
We narrowly avoided a government shutdown – for now. In a stunning upset on September 30, both chambers came together to pass a stopgap bill to avert shutdown, funding the government until November 17. This appropriations season has been especially fraught; both chambers have introduced bills with such drastically different spending priorities that the road to compromise is long. Conference committees exist to create a compromise bill that both chambers can agree upon. Fights over abortion and gender-affirming care have ramped up in the last year, and House appropriators have tacked on anti-abortion riders to almost every spending bill.
The House bills would also severely cut or eliminate funding to important women’s health programs. A year after the Dobbs decision, House appropriators have passed a Labor, Health and Human Services appropriations bill that would zero out funding for Title X, the only federally funded family program in the United States. Although the corresponding Senate bill fails to fully fund the program based on need, it protects the program by providing level funding. Title X has received flat funding for the last 8 years. Attacks on Title X are further compounded by attacks on abortion. For example, the House Agriculture and the Food and Drug Administration (FDA) bill includes language that restricts access to Mifepristone—one of two drugs commonly used to self-manage abortion. This is only one example where more extreme Members of Congress plan to use the power of the purse to restrict women’s access to essential health services.
Further, the House bills would cut funding for federal food assistance programs such as SNAP and WIC. Both programs disproportionately serve low-income women. The proposed cuts to SNAP and WIC in the House Agriculture and Food and Drug Administration would turn away an estimated 750K eligible people—primarily toddlers, preschoolers, and postpartum adults. The House L-HHS bill also cuts funding to the National Institutes of Health by $3.5 billion, this includes a $573 million cut to the Office of the Director which houses the Office of Research on Women’s health. Women’s health research is chronically underfunded, and further cuts drastically reverse progress made in the last few years. Although appropriations season is often a push and pull with Members of Congress jockeying for their priorities to be enshrined in the final package, this year is different. The country is facing the very real possibility of a government shutdown, and if both sides can’t come to a compromise before the end of the year, all federal programs will receive a 1% cut across the top.
To provide further context on how the House and Senate appropriations will affect women’s health care, the Network has created a resource page that will be updated throughout the appropriations cycle.
The Network will continue to track court cases that affect women’s health, and we have joined our colleagues in advocating against court decisions that ignore legal precedent and medical expertise in favor of ideology. Here is the case we are watching closest right now:
Can’t-miss updates from Headquarters.
My name is Jordan Bachman and I’m thrilled to have joined the NWHN team as a Development Associate! I am a recent George Washington University graduate with a degree in Political Science and a deep passion for all things women’s health, climate change, and LGBTQ+ advocacy. I previously worked in development at a non-profit dedicated to increasing youth voter turnout, so this is my second rodeo and I’m excited to use my experience and embrace new challenges. Outside of work you can find me walking my dog, rock climbing, and desperately trying to keep my houseplants alive. I’m originally from Oklahoma, one of the few states that adopted a total ban on abortion, which lit a fire beneath me to make advocating for women’s rights to bodily autonomy a full-time commitment. I’m dedicated to the mission of the NWHN and excited to do my part in furthering the cause.
Articles by the future, for our future.
I worked at a sex shop for 10 months in the Bay Area. My official title was a “sex educator sales associate.” A lot of people may hear that and chuckle. It sounds like a fancy way of saying you sell vibrators for a living. And while I have sold my fair share of sex toys, there was a lot more that went into it.
For one thing, this job was a great opportunity for me to see how sex positive feminism can be applied in our modern world. In this article I will explore a lot of important and interesting questions. What even is a sex shop, and who visits them? What are common misconceptions about sex shops? Where do we learn sex ed and when/who do we talk about it with? What does it mean to create a safe space/environment for sexual exploration? How do you figure out what you like sexually?
If any of these intrigue you, strap in!
First, I want to make it clear what I mean when I say “sex shop.” There are many different kinds of sex shops, with different products and services.
The best way I can describe the place that I worked at was 70% Victoria’s Secret and 30% sex toys. There was no sex work or promotion of sex work at the store I worked at. It is a very sex positive environment, and we definitely support sex workers, but that was not a part of our particular store.
There is a lot of negative stigma around sex stores, which can make them feel more intimidating than they really are. Lingerie stores are a much easier way for people to digest a store with products that allude to sex and pleasure. While stores like Victoria’s Secret are seen by the average person as professional and well-respected, stores that exclusively sell sex products or promote them as banner items are seen as crass, sleazy and disreputable. And while that can be the case for certain sex shops, it doesn’t apply to all. Each sex store you go to is going to be different. From the products, to the staff, to the kind of narratives they are selling.
Some questions to ask yourself/red flags to watch out for when researching sex shops are
I feel really lucky that the store I worked at was a very professional, safe, inclusive, open-minded, and educational environment. It was not crass or vulgar. All of the staff were dedicated to creating an inclusive and positive environment where people felt safe to learn and explore all things sex, pleasure, gender affirming products, etc. A good sex shop should be a place where you feel safe to explore, learn, and ask questions.
Everyone. Literally anyone you can imagine comes in. People of all ages (over 18+), gender identities and sexualities come into a sex shop. Couples, people by themselves, with their friends, sometimes with their parents. A common misconception is that the only people who go in are confident discussing sex and already know what they like/want sexually. In reality, a lot of the people who come in have never been to a sex shop before, at least not in person (nowadays there are numerous websites where you can buy sex toys online).
For a lot of people the first time they come into a sex shop may also be their first time talking openly about sex and pleasure. During my short time working at the sex shop, women especially would tell me this – women aged 18 to 80! There are also people, particularly women, who are learning about parts of their bodies for the first time. A good sex shop can help people learn more about their sexuality and their bodies. It can be a great environment that helps people find products that aid their pleasure while providing helpful, fact-based information.
A lot of people walk into a sex shop and don’t know where to start, especially when they spy the non-lingerie sections. There are dozens of different kinds of toys: vibrators, dildos, strokers (more commonly referred to as fleshlights), butt plugs, lubes, blindfolds, tools for BDSM, etc. There are a lot of toys that I didn’t even know existed until I started working at a sex shop! To say the least, it can be very overwhelming, and it can feel awkward and embarrassing as well.
While some of this awkwardness is natural, sex shops should do everything possible not to overwhelm you or make you feel sexually incompetent.
The best way to get the lay of the land in a sex shop, both of the products and the vibe, is to find and speak to an employee. I promise, they have heard it all before. In the least insulting way possible, they do not care about what you do with your sex life. We talk to people all day long about sex, to the point where you get a bit desensitized to it. Like any other field, you’re just there to do your job. The most rewarding part of the job is knowing that you are helping people to feel more confident about owning their sexualities, while destigmatizing sex and pleasure.
The short answer? No, not anyone can do it – at least not well. In order to work at a sex shop you need certain credentials. Employees should be extensively trained to work in the store; that’s another “green flag.” Where I worked, we were all trained by top-notch sex educators. We were all knowledgeable not only on the products being sold, but also on genital anatomy, as well as common misconceptions about sex and where they stem from. To do the job ethically and well, you need to be proficient in:
Unfortunately, sex misinformation is rampant, and the vast majority of us are vulnerable to it.
Misinformation on sex and pleasure can come from our friends, peers, sexual and romantic partners, school (if it had a sex ed curriculum at all!), church, media, the internet, and worst of all: mainstream porn. (I’m not against porn wholesale, but it is not a valid form of sex education and tends to be male oriented).
This cultural vulnerability is why having a safe and comfortable environment like a good sex shop, with open minded people trained in inclusive sex ed on hand to help anyone who walks in the door, is such an important societal asset. It’s why I wanted to work at a sex shop in the first place.
If you’re a woman and have no idea what you like sexually, you’re not alone. Women still face a Catch-22-like cultural barrier to sexual liberation in the U.S. What do I mean? Consider this; when women are comfortable with their sexuality and sensuality it’s often seen as something negative. They’re labeled derogatory names like “whore,” “slut,” “trashy,” etc. But if they’re not confident in their sexuality then they’re labeled as a “prude” or “boring.” So there’s really no way to win.
The only way to fight through this is to reject the construct altogether, and accept that you don’t need to live your life by its oppressive structure. This is obviously easier said than done. Learning to navigate your relationship with your sexuality can be difficult for anyone. But one fabulous way to start is by asking yourself what you like. And if you have no idea, exploring and trying different things (within your comfort level) can help you to discover the answers to that question. Set aside some time and really think about what you would be interested in trying, perhaps by journaling or browsing sex positive websites at first.
What excites you?
What feels off-limits?
What are you curious about?
What are your boundaries?
Sabrina Francis is a 22-year-old recent college graduate who completed a Bachelors in Feminist Studies. She is very passionate about women’s empowerment and comprehensive sex education.
Answers to your burning health questions.
Herpes is transmitted through skin-to-skin contact with someone who has the virus, often during vaginal sex, oral sex, anal sex, or kissing. It’s possible to get herpes from a partner who does not have a visible sore or is unaware of their infection. You can also get it from receiving oral sex from a partner with oral herpes.
Many people do not show symptoms of herpes. If symptoms are present, they can look like:
Health complications associated with herpes include:
If symptoms are present, a health care provider may diagnose herpes by examining any sores there are present on the body and sometimes they will take samples from those sores and run tests on them. If no sores are present, a blood test can be used to detect HSV antibodies.
There is no cure for herpes, but daily use of prescription antiviral medicines can prevent or shorten outbreaks.
Below are some go-to trusted websites the NWHN uses frequently when researching sexual health:
Action Alert! Oct 13th is herpes awareness day
You can learn more about this health observance here.
We hope you found this information helpful. If so, please consider joining the NWHN family by becoming a member here. Have a question of your own? Email us at [email protected]
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 continued availability of external resources is outside of the NWHN’s control. If the link you are looking for is broken, contact us at [email protected] to request more current citation information.
Readable summaries of the latest medical research.
Hormone receptor-positive/HER2-negative breast cancer makes up about 65 – 70% of breast cancer cases in the U.S. At this year’s American Society of Clinical Oncology’s Annual Meeting, a study was presented showing the effects of taking Kisqali, a targeted-therapy drug used for women with hormone-receptor positive/HER2-negative early-stage breast cancer. Kisqali, also known as the drug ribociclib, was tested with hormonal therapy in a cohort of about 2,500 patients. This cohort was compared to another cohort of approximately 2,500 patients who only received hormonal therapy alone. Over the course of about 3 years, breast cancer remission rates were about 90% for patients treated with ribociclib, compared to 87% for patients treated only with hormone therapy. Ribociclib showed better outcomes in overall survival and length of time with no signs of cancer returning in the long-term future. While follow-up studies are still needed, this study shows promising evidence for breast cancer treatment options.
A recent study aimed to analyze the association between state-level access to reproductive care and suicide rates among people of reproductive age in the U.S. Using a longitudinal study model, researchers assessed the changes in enforcement of state-level restrictions to reproductive care and how they compared to state-level suicide rates between the years of 1974 to 2016. The analyses showed that enforcement of laws that regulated abortion were associated with a 5.81% higher annual rate of suicide amongst people of reproductive age than in pre-enforcement years. While more research needs to be conducted on current factors affecting access to reproductive care services, these potential unintended consequences are important to consider as the nation is experiencing more changes to reproductive and abortion care services and policies.
Historically, there has been little research on the links between intimate partner violence (IPV) and self-harm, suicidal thoughts, and suicide attempt. This study aimed to analyze these linkages using a cross-sectional survey of over 7,000 adults. Survey participants were asked about their experiences with sexual, economic, emotional, and physical abuse from a current or former partner, as well as their experiences with suicidal thoughts and attempts and self-harm. Researchers also recorded other adversities using a version of the List of Threatening Experiences, which categorizes life events and their contextual threats. Results from this study showed that intimate partner violence is especially common amongst people who identify as women, and is strongly associated with self-harm and suicidality. It is recommended that people who seek out services for suicidal stress or after self-harm should be asked about experiences with IPV. Furthermore, interventions for IPV may also protect and improve the lives of those who are at risk of self-harm and suicide.
The National Women’s Health Network thanks our members for their generous donations.
Paula M. Block-Levor In Memory Of David and Joanna Block
Alberta Joy Freidus-Flagg In Memory Of Bertha Claire Lee
Mary E. Burnham In Memory of Kate Burnham
Carol Rogers In Memory Of Mary Anne Milligan
Robert C McGregor In Memory Of Deborah Kuhn McGregor
Rolene Cohen In Loving Memory of my Cousin Bernard Gordon
Marc Wolff In Memory Of Dr. Anne Gushee Arsenault
Sharon Kaplow In Honor Of Girl Scout Troop 50467
Holly Wohl In Memory of Lola Mason
Julia Haines In Honor Of Denise Barbieri
*Donor is a member of Collective Champions, or giving recognition program for monthly donors. Join today at https://nwhn.org/donation/programs/ or call us at 202 682 2648.
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