WOMEN’S BRAIN HEALTH SERIES: Diverse Women in Clinical Trials—We Can Make a Difference

Marsha Henderson photoToday we wrap up our Disruptive Women WOMEN’S BRAIN HEALTH SERIES with a post by FDA’s Marsha Henderson. 

Clinical research will play an important role in helping to advance our understanding of Alzheimer’s disease and dementia in women. During my 20+ year career at the FDA Office of Women’s Health, I have seen improvements in women’s overall participation in clinical trials and advancements in clinical research design and recruitment. However, I know that despite this progress our work is not done. Many women are still uninformed about clinical trials or they simply haven’t been asked to participate.

My office launched the Diverse Women in Clinical Trials Initiative to help change this reality.

Our initiative strives to promote the participation of diverse populations of women in clinical research by conducting outreach and awareness activities across the country and by supporting workshops to share best practices with researchers and health professionals. We are bringing together a community of everyday women, health professionals, caregivers, researchers and advocates who are raising their voices to encourage women to participate in clinical trials.

Deciding to participate in a clinical trial is a decision that women must make after talking it over with their health care provider and family. As with all medical treatments, you have to consider the risks and benefits of participating. I know firsthand. I made the decision to participate in a clinical trial following surgery for glaucoma. I decided to participate because it might help other people who may need the same surgery in the future. In fact, many women participate in trials because they want to help others. (more…)

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Making women’s heart health a higher national priority

Today, in observance of World Heart Day, we’d like to share a blog post co-authored by one of our Disruptive Women, Dr. Bernadette Melnyk, and Congresswoman Joyce Beatty (D-OH), which was originally published on The Congress Blog on The Hill this morning. Great to see such leadership in the Buckeye State!

There is an old adage that “silence is golden.” But when it comes to heart disease, silence is deadly. A recent study in Circulation that tracked thousands of individuals over a 16-year period found that almost half of all heart attacks did not generate symptoms that would prompt a call for medical help.

 For women, often tragically, there has been a long association between life-ending heart disease and silence. Few realize it, but cardiovascular disease kills more women than any other illness—more, in fact, than all cancers combined. Heart disease rates among young women, particularly African American and Latina women, are on the rise, and death rates have stayed unacceptably high.

(more…)

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WOMEN’S BRAIN HEALTH SERIES: Meet Myriam Marquez: Lawyer, Fierce Advocate Living with Alzheimer’s

Alzheimer's-Banner-Draft-2_1In the next few decades, the number of persons over the age of 65 with Alzheimer’s disease is set to nearly triple from an estimated 5.2 people today to 13.8 million in 2050. It is an expensive disease–total payments for health and long-term care for all individuals with Alzheimer’s disease and other dementias in 2016 are estimated to be $236 billion, of which $46 billion will be out of pocket. These numbers will continue to challenge our country’s resources, health and long-term care systems, and families for years to come. However, as researchers search for a cure, we must also meet the challenge of living well with Alzheimer’s—and we must start by listening to the voices of those living with Alzheimer’s and other dementias.

As September is World Alzheimer’s month, we took some time to speak with Myriam Marquez. Myriam is an advocate who lives with dementia, and currently serves on the Advisory Council for the National Alzheimer’s Project Act. Myriam was quoted in a paper for the Dementia Action Alliance, saying, “Those of us living with dementia are alive. We can feel, we can laugh, we can cry no matter what stage we are in. There are so many things we can continue to do during the course of the condition.” As Myriam notes, people can live well with Alzheimer’s, and it is important to engage persons living with dementia in developing the care support systems that will make this possible. (more…)

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WOMEN’S BRAIN HEALTH SERIES: Dementia-Friendly Communities for All of Us—Why We Need Them and What You Can Do

Nora Super, Chief, Programs & Services, n4a

Nora Super, Chief, Programs & Services, n4a

While we all hope for a cure for Alzheimer’s disease soon, the reality is that millions of people need support now—and 60% of people with dementia live at home. The good news is that we can all do our part to meaningfully support people with dementia and their care partners.

This is personal for me.  First, as ED of the 2015 White House Conference on Aging (WHCOA), Dementia Friendly America (DFA) was brought to my attention as a grassroots movement in Minnesota providing tools to make communities more dementia-friendly.  At the WHCOA, DFA committed to expand to 15 communities beyond the 35 communities in Minnesota. Today, just one year later, over 80 communities in 30 states are striving to become dementia friendly.

Alzheimer's-Banner-Draft-2_1Second, as a daughter of someone with dementia, I know firsthand the painful experience of encountering health professionals, restaurant servers and store clerks who have no clue how insensitive and destructive their treatment of people with dementia can be.  DFA gives people the resources to create a dementia-friendly environment across all sectors—from banks to transportation and housing.

That’s why I am proud to co-chair DFA as part of my new role at n4a.   I hope you’ll join us in this essential work to better support people with dementia and their families. (more…)

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WOMEN’S BRAIN HEALTH SERIES: Overcoming Barriers to Care for LGBT Elders with Alzheimer’s

Marcy Adelman, Ph.D., is a psychologist in private practice, founding member of the San Francisco LGBT Dementia Care Oversight Committee, a former member of the San Francisco LGBT Aging Policy Task Force, and co-founder and current Board member of Openhouse, an LGBT senior housing and service organization in San Francisco, California.

Jim and Fred have been a couple for thirty-three years. They had been together for fifteen years, when Fred’s personality began to change. But it was another four years before they got the diagnosis: Alzheimer’s.

Alzheimer's-Banner-Draft-2_1For Jim, the news was doubly challenging. He had no idea what to do about the disease. And he didn’t feel confident that service providers would understand their relationship. Jim was really concerned about how doctors, in-home care providers, and others would react to the couple being gay. Would he not be allowed to remain as Fred’s chief caregiver? Because they weren’t legally married, and still are not, would Jim  be prevented from making day-to-day and life-and-death decisions? Might he even  be stopped from being able  to see his partner?

The American public has become very aware and afraid  of Alzheimer’s. More than 5 million individuals live with it, and that number is expected to triple over the next few decades as more people are living longer (Alzheimer’s Association, 2015). Alzheimer’s is the sixth leading cause of death in the United States and remains the only leading cause of death for which there is no cure (Alzheimer’s Association, 2015).

Yet for LGBT older adults, Alzheimer’s can evoke a double stigma: living with dementia and being LGBT (Adelman, Nolan, and Haskell, 2013). As with everyone else, LGBT older adults fear losing themselves and their memories, being embarrassed or devalued, or simply being avoided. Mostly, people are frightened of becoming completely dependent upon the care of others. (more…)

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WOMEN’S BRAIN HEALTH SERIES: Empathy Gap: Americans Impacted by Alzheimer’s Disease and Candidates Running for National Office

Mary WoolleyPresident and CEO Research!America

Mary Woolley
President and CEO
Research!America

Almost two-thirds of Americans with Alzheimer’s and other dementias are women. In addition, more women than men shoulder the burden of caring for someone with dementia, according to the Alzheimer’s Association. A recent poll commissioned by the Alzheimer’s Association found that more than half (53%) of women with children under age 18 felt that caregiving for someone with Alzheimer’s disease was more challenging than caring for children. By the year 2050, it is estimated that 13.8 million people age 65 and older in the U.S. will have Alzheimer’s – equivalent to the entire combined population of New York, Los Angeles and Dallas. Given the prevalence of Alzheimer’s and the emotional toll of the disease, it is puzzling that so many candidates running for national office have been essentially silent about what they would do, if elected, to combat this debilitating disease.

Maybe caregivers are just too exhausted, and patients unable, to be stronger advocates for making defeat of this dreadful disease a priority for candidates. But even if they aren’t hearing about Alzheimer’s from people in their own extended families and from among their constituents, there’s another reason candidates should care: Alzheimer’s will bankrupt our nation. A recent Alzheimer’s Association report calculated that total annual payments for health care, long-term care and hospice care for people with Alzheimer’s disease and other dementias are projected to increase from $236 billion in 2016 to more than $1 trillion in 2050.

Alzheimer's-Banner-Draft-2_1Alzheimer’s won’t go away by itself.  As we know from the history of epidemics and public outcry to find solutions – such as the HIV/AIDS movement – it takes robust investments in research and pro-innovation policies before we realize the ability to reverse the trajectory.  Policymakers are key to both those requirements. A majority of Americans (80%) say it is important for the next President and the next Congress to assign a high priority to putting health research and innovation to work to assure continued medical progress, according to a survey commissioned by Research!America, but poll numbers don’t speak as loudly as an advocate’s voice. There simply aren’t enough advocates speaking out to candidates as yet. This reality is demonstrated in additional survey data, which shows that fewer than a quarter of Americans say candidates running for Congress listen to and understand their health concerns, and one-third express similar views for presidential candidates. This adds up to an empathy gap in which voters simply do not believe candidates care about their best interests. (more…)

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WOMEN’S BRAIN HEALTH SERIES: The Health e-Brain Study: Reflecting on the Cognitive Health of the Caregiver

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Meryl Comer

Today’s post acknowledges World Alzheimer’s Day by calling attention to the caregivers. Dr. Lathan is the Founder & CEO of AnthroTronix and Meryl Comer, a caregiver who has shared her personal journey through her book, Slow Dancing with a Stranger, is President, Geoffrey Beene Foundation Alzheimer’s Initiative and Founding Partner, 21st Century Brain Trust® and board member of UsAgainstAlzheimer’s.  A huge shout out to Lynn Posluns, President, Women’s Brain Health Initiative, headquartered in Toronto.  Lynn has given us permission to share today’s post which will run in the October 17th issue of the Women’s Brain Health Initiative’s Mind Over Matter® magazine. 

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Corinna Lathan, PhD

Every time we go to the doctor’s office, our height, weight, temperature, and blood pressure are meticulously checked and recorded. Those vital signs are important, but we seem to be missing the most important vital sign of all – our brain vital. One in four Americans suffers from conditions that affect brain function such as depression, post-traumatic stress, or Alzheimer’s. And, all of us experience times when our brain is not operating at maximum efficiency.

These same observations apply when caregivers of loved ones with dementia look in the mirror. Over time we forget who we are and ignore early warning signs about our own brain health status. What if there was a “mobile mirror” we could access on our smart phones anytime/anywhere that: 1) objectively measures and feeds-back an early alert on our personal cognitive vitality; 2) links back to a research study that tracks and validates the impact of caregiving; and 3) turns our collective experience into research-worthy data to improve health outcomes and impact policy.

The Health-eBrain Study is a mind-meld of researchers in mobile health innovations, the non-profit, BrightFocus® Foundation, and the Geoffrey Beene Foundation Alzheimer’s Initiative. (more…)

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Transgender healthcare coverage: Prevalence, recent trends, and considerations for payers

TransGender_Equality-Symbol_black-and-whiteThe post originally ran on Milliman, Inc. on July 28, 2016.

Recently, the concept of gender identity and what it means from a health insurance coverage perspective has been receiving increased attention. This paper lays out recent trends, including recent federal and state laws affecting health insurance benefits for transgender individuals. We also examine health insurance clinical coverage policies related to gender reassignment surgery as well as prevalence estimates. Finally, we provide future considerations for healthcare payers, including appropriately capturing data relevant to the healthcare needs of the transgender population.

According to the U.S. Department of Health and Human Services (HHS), the term “gender identity” is defined as:

…an individual’s internal sense of gender, which may be different from an individual’s sex assigned at birth. The way an individual expresses gender identity is frequently called ‘‘gender expression,’’ and may or may not conform to social stereotypes associated with a particular gender. Gender may be expressed through, for example, dress, grooming, mannerisms, speech patterns, and social interactions…an individual has a transgender identity when the individual’s gender identity is different from the sex assigned to that person at birth; an individual with a transgender identity is referred to in this part as a transgender individual.1

In most cases, to qualify for gender reassignment surgery, a patient must have a persistent, well-documented diagnosis of gender dysphoria. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM), 5th Edition (DSM-5), gender dysphoria (formerly referred to as gender identity disorder) occurs when there is a noticeable difference between the gender an individual expresses or believes he or she is and the birth gender, and when this disparity is persistent for at least six months.2 This difference, when unresolved, may lead to clinically significant mental distress, which is a defining characteristic of gender dysphoria. It is important to note that only a subset of individuals who are transgender (or gender non-conforming) will be diagnosed as having gender dysphoria because not all individuals who are transgender will experience clinically significant mental distress that can be diagnosed as gender dysphoria.

The need for healthcare services for the transgender population, including reassignment surgery, is not new. One of the first documented cases took place in 1952, when a former U.S. Army private underwent male-to-female (MTF) surgery in Denmark. In more recent years, increased awareness, changing public perceptions, evolving research and medical evidence, changing regulatory environments, and potential changes in demand may create a “tipping point” to expand the availability of healthcare services and health insurance benefits for the transgender population. Medicare, the Federal Employee Health Benefits Program (FEHBP), state Medicaid programs, and commercial insurers are all reexamining coverage policies and changing them in light of evolving standards of care and laws and regulations. Health insurers will need appropriate data and analytics to support changes in coverage policies and understand their impacts. (more…)

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Soldiers Period

Shout out to 2016 Disruptive Woman to Watch Patti Lee Stotter! Not only has she taken part in an important panel on Capitol Hill, now she’s used her artistic talents to do it again.

Don’t just take out word for it…

“Soldiers Period is a wildly hilarious short film that addresses a serious issue about women in the military.  This intimate and natural biological function has not stopped women from great achievements in all walks of life and especially serving with valor and distinction in the battle-field. I absolutely adore it.  Can I show it at our women veterans summit in September?” – Lourdes E. Alvarado-Ramos, Washington State VA

“It has great spirit….  Meanwhile, tell these women — if they don’t already know – that the days at the onset of menstruation are those in which the female hormone is at its lowest ebb; thus you might say that women are then the most like what men are like all month long!​” – Gloria Steinem

SOLDIERS PERIOD from Rock Stotter on Vimeo.

#soldiersperiod

 

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The Gender Breakdown on Research & Health

During these last days of summer, we here at Disruptive Women are reflecting on posts from when we first launched—it’s fascinating to see how far we’ve come and where we still have to go—to push—to Disrupt. After all, a woman’s work is never done. We originally published this post on November 16, 2015.

mwheadshotcolor2012When it comes to health and wellness, more than half of Americans, men and women alike, say that their family’s health has been improved by medical research, (55% men; 51% women).  Gender differences arise when respondents are asked if disease has affected them personally, or those they love. Remarkably, 40% of men, as opposed to only 25% of women, say neither they nor any one in their extended families or among their close friends suffer from any of a long list of diseases and disabilities. Even controlling for age of respondents, underlying lack of personal experience helps explain other findings in a recent public opinion poll of the U.S. adult population commissioned by Research!America, a nonprofit advocacy and public education alliance dedicated to making research to improve health a higher national priority.

Female respondents, significantly more than male respondents, say health issues and health care costs are highest among the concerns facing this country. (more…)

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Women as Agents of Change in Global Development

Julie PotyrajIn her second article of The “Women As Agents of Change” series, Julie Potyraj looks into how women across the world are working to reduce maternal mortality.

Even though many global health initiatives focus on issues related to women’s health, and though women make up the majority people working in the field, global health is predominantly led by men. Many global health funding agencies have a noticeable lack of female leadership throughout their histories. But can male-led organizations lead to the type of improvements in women’s health that the world so desperately needs?

Studies have shown that women in leadership positions in governmental organizations are more likely than their male counterparts to implement policies that are supportive of women and children. In 2003, women won nearly 50 percent of the lower house of parliament seats in Rwanda. Though they faced obstacles, these women started a dialogue about the importance of women’s empowerment, initiated pro-child legislation, and prioritized the needs of women and children in the budget. We’re also starting to see that increasing women’s leadership in global health is directly connected with improvements in health outcomes for women and children. In India, for example, there was a 1.5 percent reduction in neonatal mortality rates for every one standard deviation increase in women’s political representation at the district council level. Essentially, as the number of women in government increased, the rates of neonatal mortality decreased. (more…)

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Diabetes – Who’s in Control?

Terri Prof Headshot 0412

Terri L. McCulloch

It’s #TBT here at Disruptive Women in Health Care. And today we throw it back to diabetes.  In her post shared below, Terri lays out for us the challenges of a teenage girl developing a relationship with the care and knowledge of her diabetes and how she ultimately came to understand its place in her life. This post was originally published November 12, 2015.

What if you had no control over what you ate, when you ate, how much energy you had, or what you weigh? What if, on top of this, you had to test your blood 6 times a day and give yourself injections, carrying around your supplies constantly so you would be ready no matter what else was going on in your life? Now, throw in that you are 15 and just want to be normal, like everyone else, eating pizza when you feel like it and going wherever you wanted?

Kimberly Young was that teenager. She, likes hundreds of thousands of other American teenagers, has type 1 diabetes. Diagnosed at the age of 4, she was never like other kids. She always felt that her diabetes controlled her life. She didn’t have the carefree lifestyle of a teenager. Kimberly had to grow up more quickly than her friends as the realization that what she ate, how active she was and how closely she monitored her blood glucose had long term impacts on her health. Having too much pizza wasn’t about just gaining the “freshman 10” (or 20!) when she was in college, it was about maintaining her vision and her circulation to prevent serious complications. She learned that, “There is no vacation from diabetes. You live with it 24 hours a day, 7 days a week, no matter where you go or what you go.” (more…)

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Shout Out to Disruptive Woman Sharon Terry and DW Man of the Month Pat Terry

The following BuzzFeed News post was published on August 20th, 2016. In it, our very own Disruptive Woman Sharon Terry and Man of the Month Pat Terry, both receive some very special recognition. And we are very proud to share it here!

This Guy Swallowed Parasitic Worms On Purpose — Then Became A Published Scientist

Sean Ahrens, who has tried just about every treatment for Crohn’s disease, ingested parasitic worm eggs as a last resort — and just wrote about it for a prestigious medical journal.

Stephanie M. Lee

posted on Aug. 20, 2016, at 10:06 a.m.

Stephanie M. Lee
BuzzFeed News Reporter

 

Sean Ahrens

Since Sean Ahrens was diagnosed at age 12 with Crohn’s disease, a largely mysterious and painful condition caused by inflammation of the gut, he’s tried all kinds of diets and drugs. But what he ingested on March 17, 2010, was extreme even for him: a shot glass of parasitic worm eggs. (more…)


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IN MEMORIUM: A light for patient advocacy goes out, too soon

This post by Chelsea Rice first appeared on Athena Insight on August 19, 2016.

“There’s no reason that only 4.75% of outpatient visits and .08% of my hospitalizations are spent actively treating my condition. There’s no reason that I spent two solid months (1540 hours, 64.2 days) of this year waiting instead of healing. So, please, stop wasting my time. Stop wasting my life.”

— Jess Jacobs “On Wasting My Time — The Numbers

Jessica “Jess” Jacobs, a 29-year-old healthcare IT professional and patient, wrote these words in her blog in November 2014. In the post, she categorized the relative usefulness of the time she had spent in the healthcare system that year, in a range of specialty visits, phone calls, and hospitalizations. Like much of her writing, it was a depressingly honest account of the state of today’s patient experience: somewhere closer to useless than useful.

 

(more…)

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Why Don’t We Take Tanning As Seriously As Tobacco?

With our Back to School series highlighting how best to navigate through the college journey; we also revisit a series that ran last year in May covering the hazards of indoor tanning beds. The following is one of the posts that spoke to the risks and concerns as they relate to skin cancer. It’s Flashback Friday here at Disruptive Women in Health Care!
sherry pagoto at work2

With May being Skin Cancer Awareness Month and in tandem with our event Wednesday co-hosted with the Congressional Families Cancer Prevention Program, The Hazards and Allure of Indoor Tanning Beds on College Campuses we are running a series on skin cancer. Be sure to check back daily for posts on skin cancer including how you prevent and detect it. Enjoy!

In 2009, upon review of the science on tanning beds and cancer, the International Agency for Research on Cancer assigned tanning beds a class 1 carcinogen, joining tobacco and asbestos in the highest classification of harm. In spite of this development, skin cancer rates have steadily climbed over the last 3 decades. Rising prevalence is seen especially in young women, with an 8-fold increase since 1970. Melanoma, the deadly form of skin cancer is now the most common cancer in young adults aged 25-29. Skin cancer is hitting young women especially hard because they are the heaviest users of tanning beds. Recent statistics reveal that 19% of teens and over half of university students have used tanning beds. The risk of indoor tanning to population health has even exceeded that of tobacco. One study reported that the number of cases of skin cancer attributable to indoor tanning (~450,000) now exceeds the number of cases of lung cancer attributable to smoking (~360,000). This epidemic comes with a price tag, with annual costs for skin cancer treatment in the US now exceeding $8 billion a year and increasing at a rate 5 times faster than other cancers. (more…)

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