Table of Contents
A Message From Board Leadership
My Reduction Saved My Son’s Life: Katelyn’s Story
Shifting Paradigms & Shaping Policies: Reflections on the 2022 APHA Annual Meeting & Expo
The NWHN Will Launch New HEALTH Program in 2023
A Path Forward
Our New Podcast Is Live and Listenable!
Six New Board Members Have Been Elected!
(Young Feminist) Mildly Masochistic Women: Medical Gaslighting, Stigma and Barriers to Treatment for Endometriosis Patients- Hannah's Story
(Since You Asked) I am a woman in my mid-40s who was just told that I’m at heightened risk for Alzheimer’s Disease because of my family history. I am overwhelmed. What does this mean exactly?
Study Snapshots - Maternal Nurses, Cardiovascular Disease, and Leaving Medicaid
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A Message From Board Leadership
Because we're accountable to the health care consumer (that's you).
We believe that...
- Health is a human right.
- Our gender identity, race, ethnicity, sexual orientation, disability, geographical location, socioeconomic status, insurance status, and/or immigration status should not dictate the quality of healthcare we receive.
- This work is intersectional and must be conducted through a lens of diversity, equity, inclusion, and justice.
- Lived experience and scientific evidence must drive health policy and shape healthcare.
- Maintaining the integrity of our work is essential.
Earlier this year, the staff and Board of Directors collaborated on a strategic planning process to review, clarify, and update the Network’s mission, vision, and values. Together, we examined our personal values and how they are connected to the organization’s values. The intersections we discovered – the experiences and beliefs that bring each of us to this work – illuminated our shared goals for moving the organization forward.
Our strategic plan demonstrates the core values we share and guides the work we do together. From developing new organizational policies to strengthen our infrastructure, to selecting contractors who align with our mission, to identifying a diverse slate of new board members to serve our mission – these values keep us grounded in the Network’s rich history, while providing direction for growth.
As part of our strategic plan, our Policy Shop defined 12 policy pillars to highlight and prioritize the most critical areas of our work. These foci range from aging to chronic conditions, from contraception to social determinants of health, representing the wide spectrum of lived experience and scientific evidence inherent in our values.
To keep our membership informed and engaged, our Communications Team recently launched a new podcast, connecting listeners with diverse experts in varied fields and offering new perspectives on current topics in health.
Meanwhile, our Operations and Development Teams have updated and streamlined numerous systems and procedures to increase efficiency, improve accessibility of data, and provide a better return on investment.
And after a careful and thorough search, we have identified a new Executive Director, who brings her own vision and values to this timely work. She will join the Network with the demonstrated leadership, passion, and inspiration to partner with us on the organization’s next chapter.
We are thrilled to introduce her to our members in the new year, and to discover what we can accomplish together!
Abigail Arons, MPH - Chair
Kim Robinson - Vice Chair
I Lived It
Real health stories from members to inspire, educate, and activate you.
My Reduction Saved My Son’s Life: Katelyn’s Story
We found out we were pregnant while visiting San Francisco. To say we were over the moon would be an understatement! Soon after our journey back home to Colorado, one of my best friends invited my husband and I over for dinner to celebrate the pregnancy. While we were driving to her house, she called to say that she just cut into a bell pepper and discovered two baby bell peppers inside. “
It’s a sign,” she said. “You’re clearly having twins.”
Just a week or two after that dinner, my friend was proven right. I will never forget my husband’s reaction as we looked at the sonogram and he suddenly shouted, “IS THAT A SECOND ONE?!” Sure enough, a second little bean danced across the screen, and our OBGYN confirmed that we were indeed having two babies.
Once the shock wore off, I sobbed with excitement, called friends and family, and joined all the online twin groups I could to start preparing. We could not wait for these babies! And personally, understanding how unique twins are, I felt really special to have been chosen for this honor of being a mom to twins. While carrying those two babies, I felt like I had been hand-selected for the most important, most special job out there.
We walked into our first Maternal Fetal Medicine (MFM) appointment a little giddy. MFM doctors handle high-risk pregnancies, and a twin pregnancy is considered high-risk as a matter of routine. The purpose of this appointment was to check on the health of the babies using the more advanced MFM ultrasound machine. However, we weren’t concerned about the babies’ health. We have always lived healthy lifestyles, we were in our early 30s, and there was very little family history to be concerned about. So really, we were just hoping to learn the sex of the babies (which we knew was a possibility, but not guaranteed).
The ultrasound took a long time. So long in fact, that I was quite literally falling asleep on the table. It wasn’t supposed to take this long.
The technician, friendly and talkative up to this point, became far less chatty, and informed me that she was having some trouble getting everything she needed, and that she was almost done. I asked if everything looked ok.
“The doctor will speak with you about it all shortly,” she replied.
I thought it was strange that she couldn’t just say “yes” and continue on. But I was so excited about these babies, that I didn’t think much about it. Instead, I did my best to remain patient as my husband and I waited for the doctor to arrive.
Eventually, our doctor walked in. I remember her sitting down and saying very directly:
“Look, I don’t typically reveal the gender of twins until further down the line once we can absolutely be sure of all the organs. However, given your situation and what I just saw from your ultrasound, it is imperative that I tell you the gender of each baby. You are having a boy and a girl. The girl, Twin A, is showing abnormalities and her chance of survival is uncertain.”
The room started spinning.
She then proceeded to tell us that in order to better understand our baby girl’s condition (and how it could affect our baby boy), they’d need to do an immediate amniocentesis. This, she explained, was a procedure where a hollow needle would be inserted into my uterus to take a sampling of amniotic fluid that would help screen for developmental abnormalities in our baby girl. Once the doctors had a better idea of her condition(s), they could let us know what we were facing so we could talk to specialists and properly prepare. The doctor spoke to us about the risks involved with an amniocentesis and the increase in risk with twins. She also shared the benefit of the procedure, as it would allow us to make informed decisions to best protect and support both babies.
My husband and I were given only a few short minutes alone to discuss our next steps. If we decided to move forward with the amniocentesis, the procedure would have to take place immediately, as it was too dangerous to do it at a later date.
I wish I could adequately convey what it feels like to discover, within a period of 5 minutes, that: (a) we were having a girl and a boy,
(b) our baby girl was not healthy and would not live a full life if she survived past birth, and
(c) that we had to choose instantly whether or not we wanted to move forward with a high-risk, invasive procedure to better understand the risks and complications that our baby was facing, and how it could affect our other baby.
It was emotional and entirely overwhelming. In the end, we wiped away tears, moved forward with the amniocentesis, and prayed that our babies would be ok.
The next day we went to our OBGYN to check the babies’ heartbeats. After we heard both heartbeats and saw our little ones moving around, our OBGYN broke down into tears. She was completely devastated with us. She said she sees all types of scenarios but that this “was too much to bear” and that we “shouldn’t be going through this...” Instead, we “should be enjoying this pregnancy and focused on planning the wedding” which was just a few weeks away. She gave us her personal cell phone number and told us to text or call whenever we wanted, with any questions, concerns, or needs.
We are still in touch to this day. I can’t imagine how we would have fared without her kindness, support, and care.
After many more tests and more tears, it was determined that the only way to save the pregnancy and deliver a healthy baby boy, was to undergo a fetal reduction. In other words -we had to let one twin go so that the other could live.
The day of the reduction, I was numb. I was approximately halfway through my pregnancy, and still hoping (pleading?) that a doctor would come in and tell me that they had accidentally called the wrong family. That all the many specialists who called us with bleak updates had gotten it wrong, and that our baby girl was actually completely fine.
I don’t remember everything from that day. But I do remember the doctors and nurses telling my husband that he couldn’t be in the room with me. I remember crying uncontrollably, and eventually crying softly. I remember the doctors and nurses being really kind and reminding me that women are incredible, and that we are capable of anything.
However, once the procedure started, my doctor’s demeanor changed, as she moved away from being a comfort, and more into “job mode” (which I can’t entirely blame her for). She began getting frustrated with me, telling me I needed to stop crying because it was causing my belly to move, which was preventing her from doing the procedure safely. I remember seeing the ultrasound of the two babies. I remember them not being successful with the first attempt because my bladder was too full. I remember them stopping the procedure, and having me hobbleout of the room, down the hall to the bathroom. I was stained with tears, bleeding, naked underneath the hospital gown, and petrified. After the second attempt, I remember them confirming to each other that my baby girl’s heartbeat had indeed been stopped. The doctor confirmed... double confirmed... triple confirmed... over my spent body, as if I wasn’t even lying there. They then looked at me and told me that my son’s heart was still beating, and that after three weeks we’d be past the high-risk period of losing him too as a result of the procedure.
I vaguely remember my husband rolling me out in a wheelchair to our car. In that moment, I felt ashamed. I felt devastated. I felt soulless.
We went home, ordered take-out and cried. We cried for days. We kept reminding each other why this was the best -and only -option for us and our twins.
The very next week, my husband and I got married. As the wedding day got closer, my mother called, emailed and texted incessantly (or what felt like incessantly) asking questions about event minutia. It was well-meaning, but what flowers I wanted and where the tealights should be placed at our small reception felt so insignificant at that point –I couldn’t have cared less.
We told our families who were attending the wedding not to mention our pregnancy. Even after our wedding, I didn’t want our pregnancy mentioned. I tried to find clothes to hide my stomach as much as I could (which was impossible by that point), and I cried nearly every time some well-intentioned stranger asked me what I was having. I avoided most friends and family and had a very difficult time acknowledging my son during the pregnancy until the third trimester, when I realized that he would likely survive. I then worked on wrapping my head around what a miracle he was.
Leading up to the birth, I was incredibly nervous and anxious. I knew I’d be giving birth to both of my babies, and that only one would be alive.
I was concerned about the health of my son, how I would feel that day, and that any emotion I felt after the birth would be wrong. If I was joyful for my son, I was forgetting my daughter. If I was grieving the loss of my daughter, I was not present and grateful for my son. All of it felt traumatic.
Our son survived the birth, and we were thrilled. Interestingly, it wasn’t until the three of us were settled at home, that I thought -and cried -about our daughter. That year was incredibly challenging, for a number of reasons, including our son’s health complications the first six weeks of his life. Fast forward to when daughter was born only 10.5 months after my son’s birth (oy!). While it was the biggest reminder to me that things happen just as they should (and that we were meant to have a boy and girl “together”), I found it very challenging to connect with my daughter for quite some time. Having her so shortly after the first traumatic pregnancy was such a miracle, but also really confusing. Joy alongside grief.
While I often think about what life would have been like with our baby girl twin, and how different our world would be raising twins, I think I subconsciously locked a lot of my emotions away after my son was born, just to keep our family afloat with all that we were experiencing. Strangely, this past summer, I thought about and mourned for our baby girl quite a bit. I imagine that after a challenging three years, this summer was the first time I was able to find space to truly process her loss.
Reflections on Support, The Fall of Roe, and Beyond
My husband was incredibly supportive in all of this. It’s amazing to me that in our first year of marriage, we lost a child, had a child, spent many nights in the ER with our newborn, changed jobs, and moved twice -once across town, and once across the country. I can’t imagine going through this without such a loving, supportive, and steadfast partner. I also can’t imagine going through this without doctors that truly cared and who were gracious, empathetic, and supportive.
I don’t know what I would have done if abortion was illegal in Colorado at the time.
Would I have been paralyzed by fear? Doubtful.
Would I have tried to board a plane and get back to California (where I’m from) for the procedure? Potentially -but the emotional pain there sounds horrendous.
What would have helped make or break that decision? The thought alone is terrifying and tragic. I can’t imagine having zero rights over my own body, and losing both of my babies as a result of a law that politicians –total strangers, miles away -made.
What I Want You to Know, and What I Hope For
What a person does with their body and pregnancy is 100% their decision. It has nothing to do with you or me, and should NOT be decided by anyone else, except for the person carrying the baby. Especially not a stranger. Full stop.
If my twin pregnancy had happened post-Roe, I would have been scared and devastated, but I would have had options. This decision and the resulting state abortion bans overwhelmingly affect women of color, and the most vulnerable people who do not have the same options I would have had. It affects those who can’t afford to hop on a plane or jump in the car to travel to a different state. It affects those who can’t take time off work or leave their children unattended overnight. It affects those who don’t have the resources, the support system, or the legal savvy to circumvent this heinous new normal.
Please, get involved in this fight. Use your voice. Have the conversation with that neighbor or family member who doesn’t believe that a woman should have a say over her own body. Use me as your example when discussing pro-choice. I want you to.
An attack on reproductive rights is an attack on all of us. The fall of Roe is inequitable, unjust, and a violation of our fundamental human rights.
We deserve better.
Learn more, and find out how you can make an impact from trusted, pro-choice sources like the NWHN, the Miscarriage+ Abortion Hotline, and Plan C. And, if you can, donate to the National Women’s Health Network, who helped me tell my story and who work every day to expand access to vital reproductive health care.
Got your own story to tell? We want to hear it!
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The Policy Pages
Updates on how we're shifting paradigms and making change at the highest levels.
Shifting Paradigms & Shaping Policies: Reflections on the 2022 APHA Annual Meeting & Expo
By: NWHN Staff
The American Public Health Association (APHA) hosted it’s 150th Annual Meeting & Expo in Boston, Massachusetts, November 6-9, 2022. With over 11,000 in-person attendees, APHA celebrated 150 Years of Creating the Healthiest Nation: Leading the Path Toward Equity! The APHA Women’s Caucus, established in 1970, invited the National Women’s Health Network (The Network) to present an Invited Session, which is a collaborative forum for uninhibited discussion of emerging—often not considered—issues affecting the lives of women. This was an opportunity for The Network to unveil one of its new, refreshed Policy Pillars: The Social Determinants of Health (SDOH).
Before we dive into the scholarship, an important distinction:
- Social policy consists of guidelines, principles, legislation and activities that affect the living conditions conducive to human welfare; and they are shaped by prevailing political beliefs and values, which are made tangible in the form of overarching policy objectives.
- On the other hand, the social determinants of health are conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks. Erroneously, the SDOH are often presented as happenstance rather than intentionally, historically constructed—and intentionally, contemporarily preserved—determinants.
The resulting round-table discussion session facilitated by the Network, entitled A Series of Renegotiated Relationships: How Social Policies Shape the Social Determinants of Health (SDOH), analyzed the SDOH and the social policies that shape them, both historically and contemporarily. Assessing health equity across the lifespan of women, the session highlighted how structural racism and implicit biases shape and preserve the SDOH as well as the resulting disparities and inequities that accompany them while promoting a critical analysis of health issues through the socio-political theory introduced.
Denys Symonette Mitchell, the NWHN’s Director of Policy & Partnerships, highlighted the health care access & quality determinant. and assembled these experts listed to further expound upon the other determinants. Together, they added voice to the conversation by shifting the narrative and naming the local, state, and federal policies that shape the health inequities, injustices, and disparities that historically and systematically marginalized communities live with today. Read on to learn more about the panelists and what they discussed:
1.) Dr. Ashley L. White, an assistant professor at the University of Wisconsin Madison, discussed education access & quality while closely examining disability policy and practice in education. Specifically, Dr. White contextualized how the history and current state of disability and special education policy works to disenfranchise Black students in educational systems and, therefore, Black women and communities at large. Additionally, she addressed the importance of considering and examining issues of Black disabled women, especially those with cognitive disabilities, when working toward policy and practice solutions.
2.) Dr. Caryn Bell, an assistant professor at the Tulane University School of Public Health & Tropical Medicine, discussed the social policies – particularly self-employment - that contribute to economic stability and mental well-being for Black people. She examined how the public’s relationship to work during the COVID-19 pandemic has resulted in increased rates of self-employment in the U.S. Furthermore, rates of self-employment are increasing at the fastest rates among Black women, who seek to escape the detrimental impacts of microaggressions and hypervisibility in office settings and use various forms of self-employment to improve financial security and empowerment.
3.) Krystal Garcia, the Director of Policy for the Boston Public Health Commission, discussed social & community context while closely examining language and communications access at the local level. She took a deep look at language access barriers – also known as health literacy – in health care paired with the resulting inequities and generational harms caused. The main takeaway: while personal decisions are significant, most persons or historically marginalized communities cannot arrive at an optimal decision without first understanding what options are available and the resulting implications. Arguably, this makes language one of the most significant social determinants of health and wellbeing.
4.) Lauren CJ Barrow, a doctoral student at Johns Hopkins Bloomberg School of Public Health, discussed the neighborhood & built environment determinant, specifically how a lack of secure housing is a constant threat to many Americans and can lead to poor health outcomes. For example, people who are unhoused have chronic conditions up to six times higher than the general population and are 2.5 times more likely to have unplanned hospital admission. The COVID-19 pandemic exacerbated this SDOH and health disparities for many people, especially people of color. Data from the Census Bureau’s Household Pulse Survey estimated that 14.6 million adults lived in households behind on rent or mortgage payments between September 1 and September 13, 2021.
Stay tuned… This brief summation is only a snapshot of how the National Women’s Health Network has been hard at work refreshing campaigns, shifting paradigms and shaping policies—both existing and newly proposed!
The NWHN Will Launch New HEALTH Program in 2023
By: NWHN Staff
This year, the Network sunset its award-winning Raising Women’s Voices program and launched a program built on over fifteen years of grantee feedback and lessons learned. Our new Health Equity & Access Leadership Training Hub (hereafter the HEALTH Program) will shift paradigms and shape policies by funding and training grassroots health organizations in high-need areas. To identify this first cohort of organizations, the NWHN conducted a comprehensive search this fall of organizations across the U.S. We looked specifically for organizations doing work on comprehensive maternal and reproductive health through a reproductive rights and justice lens. The response to our outreach and search was overwhelming, but in the end, five organizations stood out. We are pleased to announce the locations and missions of the organizations that will make up the first HEALTH program cohort. Their names will be shared in the future:
These five organizations will all receive a grant of $14,000, as well as six months of free training conducted by the Network from January – June 2023 that will cover topics like:
- Roots to Rights: The Legacy of Reproductive Justice, Policy and Advocacy
- Big P, little p: A Guide to the Levels of Policy Engagement
- Know Your Advocacy: Lobbying vs. Education
Setting Your Priorities and Building Roadmaps
- Horizon Planning for Sustainability
- Communications, Media & Marketing
- Mapping your Network: Fostering Collective Agency & Power
Building your Policy and Advocacy toolbox
- Understanding Influence: Identifying Key Local & National Players
- Making Your Case: Challenge, Action, Result
- Cultivating Champions on Capitol Hill
Stay tuned for more information on each of these organizations and what they're working on in 2023.
Can't-miss updates from Headquarters.
A Path Forward
By: Rachel Branaman, Interim Director of Development
The world has changed since the Network hosted its last in-person event in June 2019. On October 27th, we came together to celebrate community, honor the history of the women’s health movement, and chart a path forward for the Network while remaining true to our progressive, feminist roots.
The fall event was a pivot point for the Network, providing a space to demonstrate the momentum the organization has gained over the past year with the re-envisioning of current programs and addition of new programs. Here are a few of the updates:
- Formalizing the Network’s Consumer Health Education program, expanding how we reach our members, followers, and American consumers.
- Updating the Network’s website content with the support of volunteer health officers (VHOs) who have medical and policy expertise to ensure the 160,000+ people who visit the website monthly have up-to-date and accurate health care and policy information.
- Refreshing our 12 Policy Pillars to be more inclusive, impactful, and responsive to the nation’s health needs.
- Re-envisioning the Network’s long-running and much beloved, Raising Women’s Voices program as a newly developed Health Equity and Access Leadership Training Hub (HEALTH) program which incubates BIPOC-led and grassroots organizations through a small grants program to shift paradigms and shape policies.
This event was also a launchpad for the Network’s new biweekly podcast, Your Health Unlocked, which empowers listeners to make informed health care decisions by elevating reliable information and lived experiences. The inaugural episode featured three powerhouse panelists in the policy and programming space. Together, they discussed the history, present, and future of the women’s health movement in the U.S. and how we can better fight for health care access and equity for all. You can watch the video-stream of the podcast on our website as well as learn more about the panelists and resources shared during the panel discussion.
While our esteemed honorary chair, Francine Coeytaux, co-founder of Plan C Pills, was not able to join us in-person, she spoke passionately about how the Network empowers and supports women’s health over the course of our lives.
The [Network has played a] unique and critical role in making self-managed abortion a possibility in the United States. The NWHN has been critical to the existence and success of Plan C and others. In 2014, before Plan C even had a name, it was the Network that cohosted the first meeting to be held in the United States to share with reproductive justice leaders… the international evidence that abortion pills were safe and could be self-managed… And in November 2016, when Plan C needed a new home, the Network stepped up and agreed to take the organization in [as a fiscally sponsored project]… Were it not for the Network’s brave leadership, during this time of pervasive fear, Plan C would likely have ended then and there.
The Network’s board chair, Abigail Arons, MPH, closed the program by sharing about her interest in women’s health and how it led her to volunteer service with the Network. We’ve shared some of her remarks below:
Growing up as the daughter of two doctors, health is something I’ve always been aware of and curious about. My first job after college was working at the Women’s Health Research Center at Yale Medical School, where I was shocked to learn that women were not equally included in clinical trials to test drugs and medical devices. How can we trust the medications we take or the treatments we undergo, if they haven’t been thoroughly tested and proven in women’s bodies, in our bodies? How can we trust our medical providers, if they don’t have the data to demonstrate what is safe and effective for us? How can our providers help us make informed decisions about our health, when the information doesn’t exist?
Eventually my interest in women’s health led me to the University of California in San Francisco, where I now direct clinical trials on reproductive and sexual health, HIV and cancer prevention, and health disparities related to poverty and racism. Understanding and reducing inequities based on gender, race/ethnicity, income, education, geography, and health conditions are at the heart of my work, which is why I have devoted my time and energy to this organization.
This event would not have been possible without the support of our generous sponsors and partners which include:
Trendsetter Sponsor: Pandia Health
Pathfinder Sponsor: The Communities Group LLC
Catalyst Sponsors: Nicki K Media and Heidepriem & Associates LLC
In-Kind Partner: Ms. Magazine
Silent Auction Donors:
Ellie von Wellsheim, Schenectady NY artist
Hudley Flipside with The Seminary of Praying Mantis Publishing
Mission Accomplished Transition Services
Miss Pixie’s Furnishings and Whatnot
Our New Podcast is Live and Listenable!
By: Adele Costa, Director of Communications
On Thursday, November 3, the National Women’s Health Network launched its new podcast, “Your Health Unlocked,” by releasing three can't-miss episodes:
What’s the podcast about?
We started Your Health Unlocked because we wanted to empower the public to make better health care decisions by elevating reliable information and stories about today's most pressing health topics. Every other Thursday, we’ll be releasing episodes between 25 – 40 minutes in length. These episodes will feature interviews with NWHN members, allies, health care providers, and policy/advocacy experts about topics related to our 12 pillars.
How do I listen?
Listening to the podcast is easy – even if you’ve never listened to a podcast in your life!
Option 1: Listen Directly on Our Website
Option 2: Download the episode and listen via Spotify
What episodes are coming out and when?
We are thrilled to share this exclusive advance schedule of upcoming episodes with our membership:
- EP006 Dec 15 - Must-Know Birth Control Info With Dr. Yen
- BONUS EP001 DEC 25 - How to Get Your Allies to Take Action With Kate Sitarz
- EP007 Dec 29 Navigating Dementia and End of Life Care With Dr. Julie Thai
- EP008 Jan 12 Domestic Violence Must-Knows With Sara Barber
- EP009 Jan 26 A Breast Cancer Diagnosis at 31 - Abigail's Story
- EP010 Feb 9 Maternal Health Memories and Musts With Byllye Avery
- BONUS EP 002 FEB 14 - The Commodification of Self Care + Sujaya Balachandran
Got your own story to tell? We want to hear it!
The NWHN prioritizes our members (that’s you) when it comes to sharing lived experience. Just fill out this short form with your name, email, and a short pitch, and we could feature you in writing or over the air waves. (Don’t worry – you'd get help from our skilled storytelling guides every step of the way).
The NWHN’s Promise to our Storytellers
- Our editing process will be trauma-informed and storyteller led.
- You can tell your story anonymously if you wish.
- If you wish to use your real name in your story, you will get full credit for your work.
- We will never change your wording or make edits to your lived experience story without your express permission.
- We will only use images to accompany your story that you approve or provide.
- You will see and approve the final version of your story before it is published.
- After your story is published, you can reach out and request changes or deletion at any time.
Six New Board Members Have Been Elected!
Read on to get to know them better.
The NWHN is governed by a 14-person Board of Directors elected by the membership. Every two years, approximately half of the fourteen seats are up for election. This year, there were eleven very strong candidates running for six seats on the board, and hundreds of you weighed in via our electronic voting process to make your voices heard. Today, we are excited to announce the six elected winners here and share a bit more information about them.
Abigail Arons, Board Chair, had this to say about the results: "I am thrilled to welcome six new members to the NWHN Board of Directors. Elected by the Network's membership, these new board members bring a wealth of professional expertise and a diversity of personal lived experiences that will help shape our work in the years to come. With backgrounds in non-profit management, health care law and policy, sex education, nursing, geriatrics, maternal health, and reproductive health, our new board members each contribute a valuable and necessary perspective on women's health policy."
These new board members will start their terms in January 2023. Click on the board member's images to read more about them.
Articles by the future, for our future.
Mildly Masochistic Women: Medical Gaslighting, Stigma and Barriers to Treatment for Endometriosis Patients
By: Hannah George
It began with burning. Sharp hot pain would take root in my bladder, winding down through my urethra in a stinging trail and blooming out across my pelvis and vulva as I released urine. Most people don’t think twice about using the bathroom throughout the day—perhaps it is even a welcome respite, a biologically-mandated time for Instagram scrolling and relief. I began to dread those moments of nagging urgency from my bladder, even more so after the incontinence started and I would leak tiny drops of urine if I didn’t reach a toilet in time. As copious testing, swabbing, poking and prodding from doctors yielded few answers, I wondered if this was my new normal.
That was two and a half years ago, and I am now accustomed to this pain; we are constant companions, though I have fortunately gained tools and strategies for pain management. And, perhaps most importantly, I have more answers. They came in the form of two primary diagnoses: interstitial cystitis and endometriosis.
Endometriosis occurs when tissue similar to the endometrium, which is the inner lining of the uterus, grows in areas outside the uterus, often wreaking havoc in the form of inflammation, erratic and severe menstrual cycles, and a host of other problems. Endometriosis affects about 10 percent of people with female anatomy aged 12 to 52, landing at around 200 million people worldwide.
In my long, painful road to discovering my endometriosis, one of the major pit stops was an interstitial cystitis (IC) diagnosis. Nicknamed the “evil twin” of endometriosis due to their frequent comorbidity, IC is characterized by chronic bladder pain and dysfunction in the absence of any infection or other source of urinary inflammation and can occur with lesions on the bladder. When I was first diagnosed with IC in 2020, I came across a quote from a doctor in a medical journal on urology published in 1970 describing IC as, “confusing, poorly understood, baffling etiologically...it makes a thoughtful physician wonder about the possibility of a mildly masochistic woman, i.e., destructive need in the female, to suffer and to ‘have trouble with’ her genitourinary apparatus.”
A mildly masochistic woman.
While IC has since been formally recognized as a legitimate medical condition, archaic comments from a 1970s medical professional reflect an attitude that remains implicit in women’s healthcare today.
Studies show women and people of color have worse health outcomes stemming from biased pathologizing and a lack of legitimacy from healthcare professionals. After two years of cascading symptoms and escalating diagnoses, punctuated with countless treatments and painful procedures, I’ve learned how destructive this medical gaslighting can be. For people who, like me, receive an endometriosis diagnosis, this state of healthcare has been a painful lived reality.
Despite the staggering number of people living with the condition, endometriosis is notoriously underdiagnosed and has an average diagnostic delay of 7 to 10 years. Many people only receive the diagnosis if they experience fertility issues, which are estimated to impact between 30-50 percent of endometriosis patients. Research shows that people assigned female at birth who go to doctors for infertility issues tend to receive an endometriosis diagnosis in half the time of those who go for dysmenorrhea, or painful menstruation—which, in striking comparison, impacts between 60-80 percent of people with endometriosis. Despite one survey showing about two-thirds of people with this diagnosis experienced symptoms as an adolescent, young people tend to have even longer diagnostic delays.
The focus on infertility as opposed to the more common symptom of dysmenorrhea speaks volumes to the medical industry and society’s stigma around menstruation. Girls and women are told to expect painful menstruation and have their concerns brushed off as nothing more than a normal burden of womanhood –but this results in countless people suffering silently–and needlessly -from the painful effects of endometriosis.
My struggles with painful ovulation began in middle school, but my gynecologist assured me it was normal. My severe symptoms began in 2020, at which point I collected a laundry list of associated conditions, including IC, irritable bowel syndrome, postural orthostatic tachycardia syndrome (POTS), and pelvic floor dysfunction, to name the heavy hitters.
Finally in February 2022, I underwent excision surgery to cut out the endometriosis lesions. Though excision surgery is considered the “gold standard” treatment for endometriosis by the Endometriosis Foundation for America, most medical establishments and institutions continue to practice ablation surgeries, or burning off the endometrial tissue, which has shown to be ineffective or providing only temporary relief. Even excision surgery, though the most effective option for most endo patients, may not always be a clear path to relief—I am currently preparing for my second surgery to remove the remaining disease, with the hopes of this procedure giving my body the chance for healing and recovery.
I have been exceedingly fortunate to be able to seek out necessary care, to travel to needed healthcare providers, and to have the resources to navigate a healthcare system that is fundamentally inaccessible. Even with all of my privileges and resources, my experience with chronic illnesses and endometriosis has been characterized by seemingly endless frustrations, setbacks, indignities, and gaslighting.
My experience is all too common amongst endo patients: waiting years for aid, experiencing misdiagnoses, having failed or unnecessary surgeries (including hysterectomies), or even handling side effects from hormonal therapy drugs which can cause early menopause are just a few of the injustices faced by endo patients. Some are told to “relax and have a glass of wine” or told to become pregnant to deal with endometriosis symptoms. Often, when treatments fail, the patients themselves are blamed and subject to medical gaslighting and dismissal –including being told psychological problems are the root cause.
When my gynecologist declared two years ago, with clear frustration and a hint of irritation in her voice, that she was “grasping at straws” and suggested my intense urinary pain was just from toilet paper that was too rough, I never would have guessed that she was overlooking a condition as common as endometriosis. I was and am exceedingly fortunate that I was equipped to look elsewhere for the right care. While it took many more doctors and treatment attempts—which included doctors blaming my anxiety for my symptoms, grilling me on my workout routines, and my trying countless diets and painful, ineffectual treatments—I was able to find the doctors I needed, and am now on a path towards healing. Reaching this point would have been impossible without the resources, time, and mobility I had at my disposal; as a white, cisgender woman with economic privilege, my navigation of our healthcare system was far less fraught than for so many others. From being able to afford medical treatment, to having the time and tools to research, travel to appointments, and take control over one’s health, accessing the right healthcare is extremely difficult, and equal access for society as a whole will require a radical shift from the healthcare structures that are currently in place.
Women in America face an inequitable healthcare system rife with misogyny, racial bias, and classism; a system they must wade through while being labelled hysterical, dramatic, or irrational in hopes of getting access to a basic human right: medical care.
We must change this. Women’s voices must be centrally valued in healthcare, and until that happens, I will continue sharing my story, amplifying others’, and leaning on the other “mildly masochistic” women refusing to be silent any longer.
Since You Asked
Answers to your burning health questions.
Question: I am a woman in my mid-40s who was just told that I’m at heightened risk for Alzheimer’s Disease because of my family history. I am overwhelmed. What does this mean exactly?
By: Joselyn Lantiqua, Registered Nurse and Volunteer Health Officer with the NWHN
Worldwide, 55 million people live with Alzheimer’s Disease.
In the United States, 1 in 9 Americans over the age of 65 are affected by this progressive disease, two-thirds of which are women, making Alzheimer’s Disease the 7th leading cause of death in the country. These figures will continue to climb as the baby boomer generation ages.
Alzheimer’s Disease impacts women at greater rates than men as aging is the greatest risk factor and women on average live longer than men.
What is Alzheimer’s Disease?
Alzheimer’s Disease is a degenerative brain disease where nerve cells are damaged over the course of decades. Early symptoms of Alzheimer’s involve memory, language, and cognitive challenges because the areas of the brain impacted first by Alzheimer’s Disease are responsible for these functions.
In terms of pathology, the classic changes in the brain related to Alzheimer’s disease involve a progressive accumulation of plaques and tangles inside and around neurons, inevitably leading to neuron death and subsequent damage to brain tissue. This damage slowly occurs over the course of up to 20 years, before the onset of symptoms.
10 Signs to Look Out For
According to the Alzheimer’s Association, there are 10 signs to keep an eye out for when it comes to the early detection of Alzheimer’s:
1. Memory disturbances that interfere with daily life: forgetting new information can be an early sign of Alzheimer’s Disease. For example, repeatedly asking the same question or relying on family or memory aids, such as post its, to remember things that would have previously been carried out independently. (So, if you’ve always been a post it person, this isn’t as concerning).
2. Issues with problem solving: Difficulties with problem solving make multi-step processes increasingly hard to complete for people living with Alzheimer’s Disease. For example, following a recipe, planning trips, budgeting, or work projects become difficult to navigate.
3. Challenges with familiar tasks: Familiar locations, names, or concepts become difficult to remember. People living with Alzheimer’s Disease may find themselves getting lost on the way to work or forgetting the rules to their favorite game.
4. Confusion with time and space: Losing track of the date, time of year, or season can be a sign of Alzheimer’s Disease. Conceptualizing the future is also a difficult task, making focusing on the present or immediate tasks easier.
5. Challenges with visual images and spatial relationships: Visual disturbances are common in people living with Alzheimer’s Disease, such as challenges with color, contrast, or judging distance. These visual disturbances ultimately may affect one’s ability to drive.
6. Language problems: People with this disease may find themselves lost in conversation, repeating themselves, and encountering difficulty recalling familiar words. Organizing thoughts in writing also presents a new challenge.
7. Misplacing things: Placing items in unusual locations and losing the capacity to retrace one's steps, such as having difficulty recalling where you were when you last had your keys, could be a sign of Alzheimer’s Disease,
8. Poor judgement: Are you noticing increasingly impulsive behavior in yourself or someone you love? Is money suddenly harder to handle, and are things like grooming, traffic laws, and other daily activities that require sound judgement falling through the cracks? This could be a sign of Alzheimer’s Disease.
9. Withdrawal from social activities: As a result of the challenges with following conversation and executing familiar tasks, people living with this disease may become withdrawn from work and other parts of their social life.
10. Changes in mood, personality, and behavior: Changes in personality often occur as a result of Alzheimer’s Disease. Confusion, depression, suspicion, anger, and fear are common as people navigate these new difficulties of daily life.
How Age, Genetics, Social Risk Factors, and Family History Play a Role
The prevalence of Alzheimer’s dementia greatly increases with age. 5% of people living with this disease are ages 65 to 74 and 33% are over the age of 85. As one ages, the progressive and degenerative effects of this disease accumulate in the brain, leading to worsening symptoms of cognitive decline.
Research has found that several genes may increase the risk of developing Alzheimer’s Disease significantly. For instance, the APOE gene was found to highly correlate with the development of Alzheimer’s. An estimated 20-30% of individuals in the United States have one or two copies of APOE-e4; approximately 2% of the U.S. population has two copies of APOE-e4.
Having a first degree relative, such as a sibling or a parent who has Alzheimer's Disease, increases the risk of developing Alzheimer’s as well. This increase in risk is not only due to hereditary factors, but also shared social risk factors. Social elements that can play a role in cognitive decline and the prevalence of Alzheimer’s Disease include lifestyle choices such as smoking and low mental and physical activity, to other health ailments, including depression, diabetes, and cardiovascular disease.
3 ways to Prevent Alzheimer’s Disease
Healthy lifestyle choices that address modifiable risk factors may prevent or delay up to 40% of dementia cases.
Diet and supplements: Choose whole, real foods over processed foods and consider switching to a plant-based diet. No matter your age, studies have found that plant-based diets do a lot to promote brain health. The Mediterranean diet, which is rich in vegetables, fruits, nuts, olive oil, and seafood, is especially recommended to support cognitive function. Lastly, multivitamins with folic acid and memory specific supplements, such as omega- 3 oils, are recommended.
Physical and mental exercise: Exercise promotes the growth of new brain cells and increases blood flow to the brain. While 150 minutes of cardio each week is widely recommended, incorporating even a mild exercise regimen can help promote brain function. Taking a brisk 20 to 30 minute walk three times per week can reduce cognitive decline (although it’s important to note that most studies on this, like many studies unfortunately, were conducted mainly on men). Keeping your mind active is also very important. Reading, listening to music, completing puzzles, and engaging in creative activities, such as producing art, are some high-impact ways to exercise your brain.
Yoga and meditation: Reducing stress can reduce inflammation, high blood pressure, and cortisol levels that affect blood sugar, all of which are risk factors for Alzheimer’s Disease. Yoga and meditation have also been found to reduce stress, anxiety, and memory loss.
Above All - Talk to Your Doctor Early
If you are experiencing early symptoms of Alzheimer’s Disease, it is important to get checked by a doctor as early as possible. Early detection:
- Alleviates anxieties
- Provides more opportunities for treatment options and clinical trial participation
- Starts the support process for those diagnosed and their loved ones.
While there is currently no cure for Alzheimer’s Disease, there is one FDA-approved medication, aducanumab (Aduhelm), that can help slow cognitive decline.
For more resources on information about Alzheimer’s or support for those living with Alzheimer’s and their caregivers, please visit Alzheimer's & Dementia.
Readable summaries of the latest medical research.
All Snapshots Researched & Summarized By: Grace Lee (MPH) NWHN Volunteer Health Officer
Study Suggests That Diversifying the Maternal Nurse Workforce Will Save Lives
Columbia University has recently released a study that assessed the association between the racial and ethnic diversification of the nurse workforce and maternal outcomes during childbirth. The study population focused on registered nurses, who are vital in comprehensive maternal health care, especially during the early recognition of maternal health complications, which can prevent maternal death. Through an analysis of over 3,500,000 birth certificates from 2017, data was collected on severe adverse maternal outcomes (SAMOs) such as eclampsia, blood transfusion, hysterectomy, and ICU admissions. The SAMOs were compared to the proportions of minoritized racial and ethnic registered nurses within each state (as determined by the Census Bureau’s American Community Survey). The analysis found that Black people were at especially high risk of SAMOs. However, compared to states with a low diversity of the nurse workforce, mothers giving birth in states with a high nurse diversity had a 32% reduced risk of SAMOs for white mothers, 20% for Black mothers, 31% for Hispanic mothers, and 50% for Asian and Pacific Islander mothers. A diverse state-registered workforce may reduce provider implicit bias, boost trust with patients, and enhance the overall care of mothers and their newborns
New Insights into Cardiovascular Disease Amongst Post-Menopausal Women
A new scope of research is now available from the Women’s Health Initiative aimed at understanding cardiovascular disease in postmenopausal women. With more than 161,000 women aged 50 - 79 enrolled in the study, researchers were able to conduct observational analyses and learned that cardiovascular diseases were the most common causes of death amongst the cohort, with nearly 31% of deaths reported through March 2021. In addition, other reproductive factors such as pregnancy loss, stillbirths, and absence of breastfeeding have been shown to be potential predictors of cardiovascular disease amongst postmenopausal women. The study also had a clinical research portion, which showed that lighter-intensity physical activities were associated with lower rates of cardiovascular disease events and mortality for postmenopausal women, compared to moderate to vigorous-intensity physical activity. Researchers also found that postmenopausal women who had insomnia had a 38% higher risk for coronary heart disease, compared to those with no insomnia. With the large population size of the Women’s Health Initiative, there are many more opportunities to gather data on aging women to learn more about the impacts of cardiovascular disease and methods for prevention.
Iowa Leaving Medicaid Meant Twice as Many People Without Birth Control Access
In 2017, Iowa made the decision to leave the federal Medicaid family program, which vastly changed state policies and shifted the healthcare landscape within the state. A longitudinal study conducted from 2018 - 2019 with 34 Iowa women aimed to understand how this impacted patients’ overall experiences and access to contraception. Through a qualitative analysis of interviews with the women, who were 15 years or older seeking family planning services at publicly-supported health centers in the state of Iowa, 27 of them experienced cost, access, and quality-related barriers, many of which compounded one another, making it even more difficult to receive contraceptives. During the two-year study, the share of patients who had not received contraceptive care increased from 32% to 62%, and the share of patients not using any contraceptive methods increased from 9% to 15% in these publicly-funded care sites. In addition, compared to patients who were at sites not impacted by the policy change, those who were at impacted sites reported higher levels of switching contraceptive methods that were not ideal for them or using no form of contraception at all. Furthermore, overall patient satisfaction with the contraceptive method decreased. This study highlights how persistent barriers at the policy level can inhibit patient access to contraception. Patients’ desires and perspectives, rather than policy, should guide contraceptive care to ensure the highest quality of health care.
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