All the articles for the latest quarter four, 2022 issue can be accessed by scrolling down this page, or by jumping to the articles that interest you specifically by clicking on the headings in our handy table of contents below.
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The Newsletter ArchiveA Message From Board Leadership | From the Wide-Open Green to the Dreaded Black Line: Gloria’s Osteoporosis Story | First Look! The Network’s Twelve Policy Pillars in 2022 and Beyond | The Intersection of Abortion Access and Black Maternal Health | Join Us for Our First In-Person Event in Over Two Years! | The Network to Launch New Podcast This Fall | (Young Feminist) Raised by Opioids – Alyssa’s Story | (Since You Asked) How Can I protect my Digital Privacy in a Post-Roe World? | Study Snapshots – Advances in Hormone Therapy, Gender-Affirming Care, and HIV | Tribute Gifts
NWHN ValuesBecause we’re accountable to the health care consumer (that’s you).
Dear Ally,
A lot has changed since 1975, the year the National Women’s Health Network was founded. For nearly fifty years, the Network has impacted the lives of millions with our advocacy efforts, cutting edge policy recommendations, and reliable health information. We have partnered with hundreds of grassroots organizations, coalitions, working groups, and individuals in our pursuit of quality, equitable, accessible health care for all of us regardless of gender identity, race, ethnicity, sexual orientation, disability, geographical location, socioeconomic status, insurance status, or immigration status. We have pushed for the ability to control our own health decisions and our own bodies, and we will continue to do so going forward. We stand on the shoulders of and honor those who came before us on this journey as we keep our focus on what is ahead.
To this end, we have spent much of this year reflecting on our organizational culture, policies, and systems. We have pulled in more best practices from the nonprofit sector to strengthen our organizational infrastructure and to increase our effectiveness. This work has led to some exciting results which you will learn more about in late October, but to summarize:
It has been a time of transition, change, and growth. The Network is evolving to address the changing needs of our members, our community, and this time. In this next iteration, we are called upon to approach things differently in order to meet the new challenges we are facing in the realm of women’s health, access, and reproductive justice. In short, we have been focused on moving the National Women’s Health Network forward, building on the important work, accomplishments, efforts, learnings, mistakes, and successes of our past, to secure the future of our work.
In the spirit of this growth, we named our upcoming Fall Event A Path Forward. We wholeheartedly invite you to join us on Thursday, October 27 at the historic Whittemore House in Washington, D.C. (or online during the livestream) for this celebratory reception.
At our first in-person event in over two years, we will be live recording a panel discussion with changemakers in the women’s health access and equity movement which will then become the first episode of the new podcast. We will also discuss some of the new initiatives described above, and will introduce more options for engagement with the Network.
And of course, there will be food, friends, fellowship, a silent auction, and other celebratory attractions.
The Network heard you. To achieve our collective vision of quality, comprehensive, and equitable healthcare that empowers and supports us in our lives, in this changing landscape, we will continue to evaluate what we do and how we do it. It is indeed a new day, and we are looking forward.
In Solidarity,
Abigail Arons (MPH), Board Chair, & Kim Robinson, Board Vice Chair
Real health stories from members to inspire, educate, and activate you.
10 million Americans are currently living with osteoporosis, according to the U.S. Department of Health and Human Services. More than 8 million of them – the vast majority – are women. But what is osteoporosis? Osteoporosis causes bones to become fragile and susceptible to breaking. Bone fractures and the related pain and disability they cause can greatly impact a person’s quality of life, as well as their physical and mental health.
What’s more, osteoporosis treatment has radically changed in a relatively short period. In the early 1990s, women had few treatment options. Now, there are many different types of treatments available. This has created a dilemma for women trying to decide which, if any, of these medications they need, as we learn more about the risks and benefits every day.
We sat down with one of these women, Gloria Slupek, an NWHN member, so that she could tell us about her journey with osteoporosis. This is her story.
***This interview has been edited for length and clarity***
My name is Gloria and I’m seventy years old. I’m very active, which is good for the bones. I go out every day and do something. I have a personal trainer, I go for walks, and golf is a particular passion of mine. I’m also taking a few classes at my local YMCA – chair yoga, balance and stability, and cardio in fact. Movement and connection have always been big parts of my life.
I was diagnosed about 23 years ago. My endocrinologist at the time prescribed Fosamax to help slow the rate of bone loss. I trusted their advice, and I immediately agreed to take the drug.
I was told that Fosamax would help grow bone mass. The doctor said it was like plastering a wall; gradually, the drug would help add to the bone to increase the bone mass. Critically, I was told there weren’t many risks associated with Fosamax, aside from during the first month or so where there may be some stomach issues and I should avoid laying down after taking the prescription. The first month passed, and I had no reactions – for years, in fact. Then, eight years later, I was advised to stop taking it because my bone density had improved.
But then in 2013, I was diagnosed with breast cancer, which complicated things. Part of the treatment for the cancer involved taking a medication where bone mass depletion was a side effect, making medication to mitigate this effect necessary, according to my doctors. That’s when I was prescribed Reclast infusions. I was on those for four to five years, but then got off those in a panic as well because I was eventually told that one of the side effects is osteonecrosis of the jaw. That’s a disease involving loss of blood to the bone in the jaw. That wasn’t something I was comfortable with. It sounded pretty scary. So I switched to Prolia, and underwent two courses of treatment of that until August 2020.
Yes! I continued lifting weights, going for walks, eating right, and doing all the things I could naturally to help with my bones. But then, right before the pandemic started, I was at a golf lesson and noticed a pain in my left thigh. I thought it was muscle pain from my exercises, so I just rested and monitored it for a few weeks. After about a month of it still hurting when I moved, I saw a nurse. This was during the lockdown periods, so it had to be done virtually.
It was the start of a long and frustrating road of discovery. First, the nurse referred me to a physical therapist. When that didn’t do the trick, I began a pain management plan. From there, I was referred to an acupuncturist. Then an orthopedic doctor sent me for x-rays. By that time, my other leg had begun to hurt, despite everything I was trying. In January 2021, I went for a new bone density test, and was then referred to another endocrinologist who then referred me to a doctor specializing in spines. And that, finally, was when I was diagnosed with the “dreaded black line” in both legs. From the time of my first pain to a stress fracture diagnosis, eight months had passed. Digestible
The “dreaded black line,” simply put, is a stress fracture in the bone that, if left untreated, could lead to a severe break. Breaks for people with osteoporosis are very dangerous, as the bones are slow to heal, and can greatly affect mobility for the rest of our lives. After my diagnosis, a surgeon called and told me to be very careful for the next few weeks until I could have surgery to put titanium rods into both legs.
The surgeon assured me that this was the best option, and that after surgery, the bones in my legs won’t break because the titanium rods would support and protect them. It made sense to me, but I was reeling. How had I gone from an active woman following every piece of advice given to me by medical professionals – from minor pain on the golf course – to last-resort major bone surgery?
I had the operation for both legs just three days apart.
It was very challenging being incapacitated like that. I had in-home physical and occupational therapy for a month. My daughter had to live with me for several weeks as I needed additional help with basic things – things like showering and getting around my home.
Special equipment was also installed throughout my house to help me get around, including support bars in the shower and a rail support on the bed. I also had to have an extra rail installed so that I could safely get up and down my three back stairs. All of this at my own expense. I then had three months of outpatient physical therapy. I literally had to learn how to walk again.
My faith and community sustained me. Members of my church would visit and pray with me. And my friends and family supported and helped me throughout. They visited, listened, brought food, and sent gifts and affirmations which got me through the ordeal.
Yes! I don’t let this slow me down. Today I live a very full life. I’m back to playing golf, have found a new passion for classes at the Y, and I’m taking up pickleball. I walk two miles per day and am always working to strengthen my legs. My life is mostly back to normal, but it was a good six months or more of hardship and needing support from health care workers, family, and friends.
They need to be fully informed about the drugs they’re taking to treat osteoporosis and their side effects. From what I understand, side effects of some of the drugs I was taking started coming to light around 2015 but I wasn’t aware and my doctors didn’t tell me. It’s crucial women advocate for themselves. That means doing our own research, reading the fine print, and asking doctors lots and lots of questions.
I’d also encourage women to look at non-drug alternatives to building bone mass, if it’s possible in their situation. I often wonder if I’d stayed off the Fosomax or the Reclast, or stopped those treatments earlier, how my journey would have been different. I have since learned that vitamin B and D, a healthy diet, and exercise are great options for increasing bone density and reducing risk of fracture.
I also want women to know that you don’t just have to admit defeat and stop moving when you reach a certain age, or get a certain diagnosis. I still have pain – I still ache, I take aspirin when I need to – but I also do a lot, and enjoy every moment of my life.
Our professional editing staff will work with you to make sure your contribution stands out. And don’t worry – we’ll take our lead from you on things like anonymity, important word choices, and accompanying imagery. Let us help you be seen, heard, and understood. Pitch us by filling out this short form, or just send us an email with your ideas at [email protected].
Updates on how we’re making change at the highest levels of government.
The Network was founded almost half a century ago. We understand that to remain true to our progressive and feminist roots, we must continually evaluate and update what we do and how we do it as the world changes around us.
To this end, the board and staff came together this year for strategic planning and revamped our policy priorities to be more inclusive, impactful, and responsive to the nation’s health policy needs.
These priorities, or pillars, are informed by the latest science and the lived experiences of health care consumers – and you, our members, are the very first folks to know. Take a look at the infographic below learn more about the twelve Policy Pillars we’ll be focusing on in the coming months.
P.S. – we’ll be discussing our policy agenda in detail at our Fall Event. Get your tickets now so that you’re in the loop!
The Black Maternal Health Federal Policy Collective was founded by The Century Foundation. They are a group of Black women policy leaders working to develop strategy and policy solutions to address America’s Black Maternal Health Crisis. Each member represents national and community-based organizations centering Black and Indigenous women in their maternal health work. The Network’s policy department is well represented on this collective, and is delighted to share its recent paper:
Click the image above or follow this link to learn all about:
Can’t-miss updates from Headquarters.
Or tune into the livestream. The hybrid event, A Path Forward, will take place Thursday, October 27, 2022, from 6 to 8 pm at the historic Whittemore House in Washington D.C. It will be a cocktail reception featuring updates on the Network’s policy agenda, new ways to engage as a member of the Network, a silent auction, and a panel discussion.
The panel, which will be live-recorded for our new podcast, includes changemakers who shaped our history, inform our present, and are securing our future:
Learn more and get your tickets before they sell out.
The NWHN will be launching our new podcast, Your Health Unlocked, on November 3.
You can learn all about it at https://nwhn.org/yourhealthunlocked.
The Podcast’s Mission
We started the “Your Health Unlocked” podcast so we could better empower you to make better health care decisions by elevating reliable information and stories about today’s most pressing health topics.
A Sneak Peek at the Launch Season
Articles by the future, for our future.
Growing up with a parent who is a drug addict can be devastating and emotional. These parents often miss out on a lot of their child’s day-to-day life: graduations, school games, and helping with homework after school. I know this from first-hand experiences with my mother, and the neglect and pain her addiction caused. But, for me, this was not the worst part. The broken promises hurt the most.
My mother’s addiction – like many – started with the misuse of opioids prescribed by her health care provider.
This is all too common as pharmaceutical companies pushed opioid prescriptions in the 1990s, citing the medication as ‘not addictive’ and contributing to the first wave of the opioid epidemic.
Over 932,000 people have died from an overdose in the U.S. since 1999. Around 10.1 million people misused opioids in the past year alone, with 96% of these individuals misusing prescription pain relievers.
It would not be until 2017 that the opioid crisis was declared a public health emergency by the U.S. Department of Health and Human Services (HHS). The health system perpetuated the epidemic while failing to address the scope of the problem.
What exactly do broken promises look like in the context of addiction?
They are the stories of “we will have a big party next year for your birthday” or the fervent declarations of “This is the last time” parents with addiction often tell their children.
When my mother would say these things, I believe she truly meant them. But it didn’t hurt any less.
One broken promise that seemed minuscule compared to others occurred on the week of my high school graduation.
My mom had been in rehab for the months leading up to this point – likely after an episode of binge using and drinking. She was doing well, and was sober and safe. I was sitting at home when I received a phone call from an unknown number. It was my mom, crying, with bad news. She could not go to my high school graduation without being kicked out of her halfway house, but she promised to be at the next one.
Although I understood it wasn’t her fault, this broke me.
After hanging up the phone, I burst into tears and screamed out years of frustration and damage. You would have thought my mom had died that day, and for me, it felt like she had. The mother I had known, and the dreams of a healthy mother-daughter relationship, seemed to vanish with that one phone call.
Whenever my mom drank or used opioids, I would feel betrayed, guilty, and frustrated. And yet I still cared for her and loved her. Having all these feelings at once is hard to comprehend.
How can you love someone with all your heart while being so hurt by them?
In the end, my mother actually did make it to my college graduation – physically. But mentally, she was thinking about her withdrawal symptoms and where she could get opioids once more.
But at this point, I knew I would continue to accomplish great things.
Visiting my mom at halfway houses and rehab is a common memory of my adolescence.
My mother was in nearly thirty centers over ten years. Each one brought its own hope, challenges, and disappointment. She has been from therapist to therapist, halfway house to halfway house, overmedicated to under-medicated, sober to suicide watch, all while navigating an increasingly complicated health care system.
I often wonder if her battle with opioids and alcohol, as well as our lives, would have been different if we had access to the funds necessary for higher quality facilities and mental health and addiction services.
But my story is not unique.
It is estimated that 1 in 8, approximately 8.7 million, children live with a parent who has substance use disorder.
These children are eight times more likely to become addicts themselves, as well as suffer from long-term consequences such as depression, anxiety disorders, problems with cognitive and verbal skills, asthma, diabetes, and obesity.
But the children of drug users are often overlooked in our health care and social systems.
Current health care policies attempt to focus on services for those with addictions but fail to address the family dynamics and needs. Current systems, including school and afterschool programs, are not equipped to support the complex needs of the children of people who are addicted. We often require additional support, and each child’s needs are unique. This means that health care providers, educators, and policymakers’ need to understand that childrens’ responses to trauma may differ.
Incorporating trauma-informed care into our science and community-based support systems to address the needs of children affected by addiction can support them both in the short and long-term.
As a society, we also need to break the stigma surrounding addiction.
I felt ashamed about my situation for a long time, which made me feel alone. When I finally felt comfortable talking to a teacher about what was going on, they said “I would have never known you were going through this.”
Addiction is not a choice, but a complex disease involving the interrelatedness of substance use, lived experiences, mental health, and more. But by not talking about addiction like we do other illnesses, we may further stigmatize those struggling, as well as their children affected by the epidemic.
By sharing my story, I hope you can get a glimpse into the impacts the opioid epidemic has on children and families. It should be a community effort to advocate for reform to address service gaps, so other children will not have to go through the trauma I have experienced.
Answers to your burning health questions.
In states where abortion is banned, there is a very real possibility that prosecutors will target digital data including search histories, geolocation, health data, or other digital breadcrumbs that suggest an illegal abortion was researched or sought.
This is not hypothetical. In at least one case from 2018, a Mississippi woman’s Google history searching for abortion pills was placed in evidence by prosecutors who sought to charge her for second-degree murder after she had a stillbirth. This case was eventually dropped but with the overturning of Roe v. Wade, we expect these kinds of cases to become more common.
Digital records are routinely part of criminal prosecutions in other types of cases. And when authorities ask for it, big tech companies usually hand over the data they collect about users. In other instances, law enforcement may try to get a suspect to willingly hand over their phone. However, the harder it is to access the information means law enforcement has more work to do, therefore making it less likely that they will move ahead with prosecutions.
Readable summaries of the latest medical research.
Hormone therapy is often used to treat menopause symptoms such as hot flashes, night sweats, vaginal dryness, and poor sleep. These symptoms occur due to the decline of estrogen levels during menopause. Recent findings, however, suggest that hormone therapy may have more effects. Hormone therapy may also reduce the symptoms of risk-reducing salpingo-oophorectomy (RRSO), or the removal of healthy ovaries and fallopian tubes. Oftentimes, women undergo RRSO to reduce the risk of developing ovarian and fallopian cancer. A recent study used a standardized questionnaire to measure and analyze premenopausal symptoms in a cohort of RRSO patients, which consisted of both women who had undergone hormone therapy and women who had no hormone therapy treatment. Within the premenopausal RRSO cohort, two-thirds of patients who utilized hormone therapy had fewer menopausal symptoms and a higher likelihood of symptom improvement, compared to non-hormone therapy RRSO patients. These findings can help inform RRSO patients in their treatment decision-making.
The National Academy of Sciences released a report to the National Institutes of Health that provides recommendations on how to measure gender and sexuality in a variety of different health care settings. Historically, there has been an absence of a federal population survey that includes intersex status, which results in challenges in the designation of intersex status and how the data was used in clinical settings. Furthermore, the lack of intersex data collection resulted in many intersex newborns having undergone genital surgery to align the child to their binary sex. This report begins to fill this gap for intersex populations by recommending data collection on intersex traits in clinical settings where sex characteristics are needed to determine the course of healthcare for the patient. In an effort to decouple social identity and biological characteristics, the report recommends separating questions on intersex status, as opposed to including it as an option for sex or gender. That said, more research is needed on structuring the language for clinical questions regarding intersex status.
An innovative report from the International Maternal Pediatric Adolescent Clinical Trial Network detailed an HIV-cured case of a middle-aged woman of mixed race who had undergone a dual stem cell transplant from an adult relative. The woman had undergone a dual stem cell transplant to treat leukemia in 2017, which she developed while on antiretroviral therapy (ART) to treat her HIV infection. After being engrafted with umbilical cord blood stem cells with a specific mutation, plus the transplant donor’s bone marrow stem cells, the patient had no detectable HIV after 100 days post-transplant. 37 months post-transplant, the patient stopped ART as no HIV was detected in the patient. The sex and racial background of this HIV patient mark a significant community impact, as HIV progresses differently in women than it does in men. This study is a promising step towards understanding and treating HIV in women, who are largely underrepresented in HIV cure trials.
The National Women’s Health Network thanks our members for their generous donations.
Abby Camacho In Honor of Socorro Lindado and Fe Camacho
Alessandra Calhoun In Memory of Katherine Grace Bunch-Sutton
Alex Visbisky For Garbage Andy
Alik Brundrett in honor of Hillary and Justin Gallego
Ana M. Crapsey in celebration of Cynthia A. Pearson
Andee D. Rubin in honor of Cynthia A. Pearson for her years of leadership
Andrew Stone in memory of Gene B. Bishop
Andrew Stone in memory of Amy Brodkey
Anita Rahman In Honor of Lynda Furash For Mother’s Day
Antonia Teresa Amore-Broccoli* in Memory of My Daughter, Carmelina R. Broccoli (3/13/1972-3/17/1972)
Athena Perrakis Sage Goddess SGTV donation
Bonnie Spanier* In honor of Cynthia A Pearson for your amazing Work, and Adriane Fugh-Berman for Yours
Bonnie Vacik In Celebration of Emily DiCesaro
Bonnie-Malachi O’Connor in honor of Adriane J. Fugh-Berman
Brandi Alston In Memory of Kate Bunch
Carol Johnson in honor of Nancy Grim
Carol Lowden in honor of Kait and Andrew Lowden
Carol Marine in honor of Eve Horwitz
Catherine Carr In Memory of Katherine Bunch-Sutton
Catherine Cogar in memory of Ruth B. Ginsberg
Catherine Purdie In Honor of Mother’s day – women decide when they can be mothers
Charlene Cerridwen* in memory of Laura Duggan
Charlotte M. Maloney in memory of Diana Masterman
Christa Gassler In Memory of Katherine Bunch-Sutton
Daryl Schneider Ship it don’t rip it grip it don’t lip it flip it when you bip it
Dave Dussault Mishotem
Diana Taylor* In Honor of Jan Stallmeyer, RN Who Introduced Me to The NWHN Over 40 Years Ago…and to Cynthia A. Pearson Who Led the Organization With Purpose…Thank you!
Eleanor McGovern in memory of Margaret McGovern
Elizabeth Werthan in memory of Amy Brodkey
Ellen D. Cassedy in honor of Cynthia A. Pearson
Enrique Kuny In honor of and in tribute to all the incredible women in my life.
Eve Rosahn* In celebration of the National Women’s Health Network
Gail Cowie in honor of Cindy Short
Janey Skinner* In Honor of Sonja Herbert, Who Introduced Me to the Network
Jennifer Ross In Celebration of Emily DiCesaro’s birthday.
Joanna Heitz in honor of Barbara E. Heitz
Kaethe Kauffman in honor of Marilyn Hite
Kaethe Kauffman in honor of Louise Heydt
Kathy Kater in honor of Scherrie A. Foster
Kentina Washington-Leapheart in honor of My OBGYN, Dr. Elizabeth Clement for her commitment to comprehensive, excel
Kimberly Robinson* In celebration of women
Lisa Kaminir in honor of Mike Newman
Lois (Lisa) Q. Semmens* in honor of my niece, Emma Slibeck
Marlene Drescher in honor of Mary R. Howell
Maura McDonald In Honor of your Mothers
Pamela Burdman in honor of Cynthia A. Pearson for her years of leadership
Paula M. Block-Levor in memory of My Mother, Joanna Block
Peter Alsop in honor of Cynthia A. Pearson
Peter Alsop in honor of Carol Koury
Philip Stanton For your right to choose
Rhonda Miracle Thankful for leadership of Cynthia Pearson & in memory of Esta Pearson Miracle
Rhonda Miracle In Honor of Mabel Pearson Busby, my & Cindy Pearson’s resilient grandmother
Richard Fletcher in memory of Alice Cave
Ross Altman in memory of Linda Huf
Sally J. Rynne in honor of Cynthia A. Pearson
Sandra Lukic For my daughters
Sarah Davis in honor of Callie, Taylor, Owen and TBD Shoemaker of Birmingham, AL
Sherry Maira in honor of my mom and all the women in my extended family
Shira Seaman in memory of My Mother, Barbara Seaman, one of the Founders of the National Women’s Health Network
Shoshanna Israel in honor of Vivian Israel
Sophia Sabatino In Honor of Phi lamba chi sorority
Stephanie and Jeff Farrior-Schumann in honor of Hope Farrior
Sue Corcoran In Honor of your daughters
Susan M. Seidler in memory of My Friend, Alice Cave
Suzanne Jacobi In Memory of Katherine Grace Bunch-Sutton
Terri Bitsie Our deepest condolences to the Bunch family from Terri Bitsie and Bryce Bitsie.
*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.
If your name is missing, incorrectly listed, or misspelled, please accept our sincere apology and contact our Development Department at 202 682 2640
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