Table of Contents
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:
- We have refreshed our policy campaigns and programs, which are now more inclusive, impactful, and responsive to the nation’s health needs.
- We are welcoming new faces and ideas on the board, on staff, and within our inaugural council of policy advisors.
- There are now more opportunities to share your stories and learn from others via the soon to launch “Your Health Unlocked” podcast.
- We have deepened some of our partnerships and formed new ones.
- And we get closer each day to finding our next Executive Director to lead our work towards equitable and accessible health care in the coming years.
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. Learn more and get your tickets online at https://nwhn.org/apathforward.
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.
Abigail Arons (MPH), Board Chair, & Kim Robinson, Board Vice Chair
From the Wide-Open Green to the Dreaded Black Line: Gloria’s Osteoporosis Story
Written by Gloria Slupek, NWHN Member
Edited by Adele Costa, NWHN Director of Communications
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***
Tell us about yourself.
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.
When were you diagnosed with osteoporosis, and what did treatment look like for you?
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.
That sounds like a lot of pivots in a pretty complex treatment plan. Were you still able to be active throughout this?
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.
Did anything come from that appointment?
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
That’s quite the journey to get an answer about your pain. What happened next?
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.
What was recovering from surgery on both legs like for you?
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.
How did you cope throughout this experience?
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.
Have you been able to get back to physical activity?
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.
What do you hope other women learn from your experience with osteoporosis?
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.
Got your own story to tell? We want to hear it!
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 firstname.lastname@example.org.
First Look! The Network’s Twelve Policy Pillars in 2022 and Beyond
By: NWHN Staff
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 Intersection of Abortion Access and Black Maternal Health
By: Denys Symonette Mitchell, Director of Policy & Partnerships
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:
- The risk of pregnancy compared to abortion
- How attacks on abortion access are grounded in white supremacy
- How state-level abortion restrictions exacerbate the Black maternal health crisis
- What needs to happen on the federal level when it comes to abortion coverage
Join Us For Our First In-Person Event in Over Two Years!
By: Rachel Branaman, Interim Director of Development
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 the our new podcast, includes changemakers who shaped our history, inform our present, and are securing our future:
- Ms. Byllye Y. Avery, health care activist, past board member of NWHN, and founder of the Black Women’s Health Imperative
- Denys Symonette Mitchell, the NWHN’s Director of Policy and Partnerships
- Cynthia Gutierrez, reproductive justice organizer, Program Manager for the University of California’s San Francisco HIVE and Team Lily programs, and board member of ACCESS Women’s Health Justice and California Coalition for Reproductive Freedom
The Network to Launch New Podcast This Fall
By: Adele Costa, Director of Communications
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
How to Get Involved
Bookmark the podcast landing page and learn about how to:
- Sponsor the podcast and gain access to our audience nearly 2 million strong.
- Pitch us an episode that showcases your health-related lived experience or expertise.
- Stay informed about special giveaways, the launch, and more.
Raised by Opioids – Alyssa’s Story
By: Alyssa Broome-Quissimisse
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.
Opioid crisis: In the United States, in My Home
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.
Raised by Opioids
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.
Question: How Can I Protect My Digital Privacy in a Post-Roe World?
By: Rachel Branaman, Interim Director of Development, in partnership with Plan C
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.
How can my digital records be criminalized?
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.
How do I protect my digital privacy?
- NWHN partner, Plan C, urges people seeking abortion medication to use web browsers like DuckDuckGo or Tor that limit data tracking. They also encourage the use of encrypted messaging apps like Signal.
- The Electronic Frontier Foundation has an article, Should You Really Delete Your Period Tracking App?That identifies immediate privacy threats alongside potential, future threats.
- The Digital Defense Fund builds software to better meet the needs of abortion access organizationsand strives to support existing open-source software projects created by allies in the movement.
- If you have no plans to delete your period tracking app, consider using one likeStardust that ensures user data is strongly protected. Look for apps that:
- State in their user agreement that they have never or will never give any information to government agencies.
- State they have never sold and will never sell user data.
- Have no ability to associate user cycle tracking data to an individual user’s name, IP address, or any other form of personally identifiable information. Make sure the only person with access to your information is yourself, meaning that not even the app can access it. So, if an app was served with a lawful government order to share information about a user, they would not have any information to share.
All Snapshots Researched & Summarized By: Grace Lee (MPH) NWHN Volunteer Health Officer
New Studies on Hormone Therapy’s Effect on Menopause and RRSO
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.
How the NIH can Foster Inclusive Gender and Sexuality Data
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.
Groundbreaking Research Into HIV Cure From Stem Cells
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.
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