Prioritizing Sex-Based Research in Heart Disease and Alzheimer’s Disease

This blog was originally published by The Huffington Post on 11/30.

Co-authored by Jill Lesser, President of WomenAgainstAlzheimers and British Robinson, Chief Executive Officer of the Women’s Heart Alliance.

What if we could access knowledge that would transform modern medicine, enabling better disease prevention, better clinical decision-making, better therapeutics and better health outcomes for all Americans?

We don’t have to imagine. The answer lies in making medical research truly inclusive—in part, by filling the widespread gender, racial, and ethnic gaps in clinical trials; and most significantly, by studying sex differences in disease. These differences include the risk factors women and men face, the way they develop and experience illness, and the way they respond to treatment.

Sex matters. Every cell has a sex, and male and female cells react differently to the same stimuli. Understanding sex differences can revolutionize how we diagnose, care, and cure disease, from catalyzing therapeutic breakthroughs and innovations to driving meaningful advances in women’s health and, thus, strengthening society as a whole.

That is why, at a time when the promise of precision medicine is gaining momentum, sex-based research should be at the forefront—beginning with heart disease and Alzheimer’s disease. (more…)


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WORLD AIDS DAY 2016

FDA-BANNER

This World AIDS Day, many of you are helping to educate women about HIV testing, prevention, and treatment. We just want to remind you that the FDA Office of Women’s Health is a partner in your outreach and care. Please use these FDA resources in your activities today and in the coming year.

Also, join us in the fight to help find a cure. Our Diverse Women in Clinical Trials Campaign is mobilizing women of diverse backgrounds to participate in HIV clinical research. Encourage the women in your networks, regardless of age, HIV status or sexual orientation, to participate in clinical trials.

Join Us

Retweet HIV and Clinical Trials information from @FDAWomen on Twitter.







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Tales, Tips and Love from Women Caregivers

Elayne-Clift

Elayne Clift

Women have always been caregivers. Whether looking after small children, elders, other family members or friends in small communities, tending to others in urban settings with limited support systems, or acting as professional caregivers in institutional settings, we have been the primary providers of physical care and emotional support in a variety of settings and circumstances throughout the ages.

Today that remains true, and being the main caregiver may be more vital than ever. As women have children later and elders live longer, we are challenged by competing demands and shrinking resources. Many of us have elderly parents living (perhaps with us) in a time of growing dementia or increasing frailty; others have parents who need supervision in nursing homes of dubious quality. At the same time, we are parenting children who quite often have their own physical or mental health challenges. We may also have spouses in failing health who need our attention. And who among us would not be there for an ill friend or family member?

Whether we are younger women focused on child care, older women charged with “being there” for a sick spouse or parent, or women in the Sandwich Generation who are called upon to take care of children and parents simultaneously, many of us find ourselves in the caregiver role, well before we expected to be there and often feeling less prepared than we wish.  We are all caregivers at some stage of our lives, and we all have stories to tell about what that has meant for us.

It’s important to emphasize women as caregivers because while men and women are both likely to fulfill caregiving roles, female caregivers spend many more hours providing care. They spend an average of 680 hours per year providing care, 160 more hours on average than male caregivers. Female caregivers may spend as much as 50% more time providing care than male caregivers. (more…)

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Disruptive Women Events: Not to be Missed

Mark your calendars now, we are not ending this year quietly and 2017 is shaping up to be a very busy year—lots of disrupting to do and we hope to have you join in!


December 13, 2016: Mobile Mirror, Mobile Mirror on the Brain: Mind, Maps, and Memory (Use promo code DISRUPT16 to get in free!)


January 8, 2017: J.P. Morgan Health Care Conference/Rock Health Digital Awards Dinner

Disruptive Women in Health Care is pleased to have been asked by Rock Health to collaborate on their Diversity Leadership Award which will be presented at the upcoming J.P. Morgan Health Care Conference as part of the Top 50 in Digital Health Awards Dinner hosted by Fenwick & West, Goldman Sachs, Rock Health, and Square 1 Bank: Sunday, January 8th in San Francisco.

A little about the Diversity Leadership Award: Tackling complex problems in health care requires not only the brightest minds, but diverse ones too. This award recognizes the organization that has shown the biggest commitment to diversity.


February 21, 2017: HIMSS Annual Conference/ Disruptive Women Luncheon
Navigating Uncertainty: Disruptive Women Style

Women spend much of their time learning to work around, work through and work directly on difficult challenges, be they work related, politics, access to capital, work/life balance (whatever that means). The one constant we know is uncertainty. 2017 is unfolding to be a year of enormous uncertainty in every dimension of the word. Who better to share tips on navigating through waves of uncertainty than women who know how to throw on a life preserver (and matching shoes) and get stuff done. Join our panel of experts for a spirited conversation.

Hear from our global panel: direct from the UK, Sarah Kerruish, Chief Strategy & Growth Officer, Antidote; Halle Tecco, Angel Investor & Founder, Rock Health; Ceci Connolly,President & CEO, Alliance of Community Health Plans; Peggy Williams, Partner, Lumeri; and Nicole Gardner, VP, Federal Healthcare & Human Services, Industry Leader, IBM Global Business Services and yours truly, Robin Strongin, will serve as moderator. (more…)

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November 2016 Man of the Month: Peter L. Levin

Peter L. Levin

Peter L. Levin

There’s an old saying that says information is power.  Peter L. Levin, founder and CEO of Amida Technology Solutions and Disruptive Woman’s November Man of the Month, has done that phrase one better, advocating the idea of “Data to the People.”

As millions of Americans know firsthand, Levin’s actions have more than matched his words.  For years, health data was stored in closed proprietary systems and made inaccessible to patients.  An individual with a serious health condition couldn’t present their health records to a new doctor because they were kept out of reach.

Blue Button changed this situation for the better.  As Chief Technology Officer at the Department of Veterans Affairs and Senior Advisor to the Secretary, Levin was instrumental in modernizing the VA’s health records system and creating Blue Button, an easy-to-use online mechanism that enabled veterans to gain immediate access to their health data.  This system has since expanded to Medicare beneficiaries and private health insurance clients, making it the most widely-used personal health records program in the country.

Today, Levin has both a position from which to continue bringing about change and an important cause to pursue.  The position is at Amida, a firm that has built a library of Blue Button and health informatics components that can make a significant difference in linking patients and consumers with their healthcare data being held in multiple repositories.  Through Amida’s systems, data in the possession of health insurers, clinicians, pharmaceutical companies, population health management firms, and employers can be consolidated, aggregated and made available to consumers for downloading and sharing.

Levin has said he believes his work is far from done and he is continuing to pursue an environment in which individuals can gain possession of their health care information just as easily as they can their financial records.   He is, in essence, calling for a new American revolution, this one focused on data.

November’s Man of the Month is making a difference improving health and lives by fully understanding that information is indeed power and using his voice and his considerable skills to ensure that data belongs to the people.







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An Epidemic of Elder Abuse Largely Affects Women

Elayne-Clift

Elayne Clift

She was an 89-year old woman in good health when she entered a nursing home for physical therapy after she’d fallen and broken her ankle. Three weeks later, her leg was gangrenous. Three months later, she was dead. The nursing home where she’d been treated was fined more than $112,000 for “neglect,’ a charge the nursing home director refuted. But the doctor’s orders, which called for monitoring the circulation in her leg and checking her skin for swelling or rednessevery shift had never been followed, nor was her wound bandage ever changed. Even when the woman complained of excruciating pain the staff simply gave her pain medication. After a physical therapist said her leg smelled like “rotting meat” she was rushed to the hospital, but it was too late. Gangrene had set in and an amputation was performed. She died shortly afterwards.

That is a true account, cited in the 2009 report, “Elder Abuse: A Women’s Issue,” published in the Older Women’s League (OWL) Mother’s Day Report that year. It is still considered the go-to document on women and elder abuse because there is precious little other disaggregated data or information relating to how elder abuse affects women.

Here’s what we do know.  Elder abuse, defined by the Centers for Disease Control and Prevention (CDC) as “any abuse and neglect of persons age 60 and older by a caregiver or another person in a relationship involving an expectation of trust,” affects women disproportionately. According to the blog Statistic Brain, the average number of elderly abuse cases each year is 2,150,000. More than 67 percent of victims are older women. (Most of them are white.) The majority of older victims of partner violence and sexual abuse are also women.

It’s important to keep those statistics in mind when contemplating the following facts. (more…)

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Women in Agriculture

Julie PotyrajMaternal and child health is not limited to pregnancy and child birth. From birth, through infancy, and well into childhood, children’s lives are in the hands of their mothers. This responsibility is an incredible challenge for a number of reasons, especially when women don’t always have the appropriate resources to safeguard the health of their children. In fact, 1 billion children lack access to at least one essential resource or service — including water, basic health care, sanitation, and shelter. This inequity in resource distribution comes at a high cost. In 2015, 16,000 children younger than 5 died every day. The causes of these deaths include respiratory infections, diarrhea, and infectious disease, and many of these deaths are preventable.

Every year, 3.1 million children die from poor nutrition. This statistic is especially heart breaking when coupled with the fact that approximately one-third of the food produced in the world every year gets wasted.

Reducing child mortality requires the collaboration of a number of sectors and strategies. There is no silver bullet for preventing all preventable deaths. Reducing food waste in developed countries will not automatically translate to improved nutrition for children in the world’s poorest regions. Global food aid has been one temporary solution to increase food accessibility. However, even with the 5 million metric tons of food distributed via global food aid in 2012, millions of children still go hungry. Women shouldn’t have to be dependent on the availability of external aid to provide for their children — especially when women themselves are a much more sustainable solution to the problem of global hunger. (more…)

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World Prematurity Day

Glenna Crooks

In celebration of World Prematurity Day, I want to introduce Disruptive Women in Health Care readers to Once Upon a Preemie and its author, Jenné Johns. It is a short inspirational story for parents whose children are born prematurely and need a Neonatal Intensive Care Unit (NICU) stay.  Jenné is a mother who made that journey with her son and is now shining a light to help others.

Jenné, I learned about Once Upon a Preemie when we met recently. As a busy working mother, how did you find the time to write something with such depth and beauty?

OUAP-Front-Cover-1aI love it when I hear that the book touches someone’s heart, just as I love my “Mom” role. My son was my inspiration for the book. Despite my 10-year career working to resolve disparities in health care, nothing prepared me for the heart-wrenching experience of my son’s premature birth.

It made “disparity” real for me as my son joined the ranks of the nearly 500,000 premature babies born in the United States, nearly half to African American and Hispanic mothers. During our three month NICU stay, I learned how to parent, nurture, and love my first-born as a micropreemie in a hospital. It was a daily test of my advocacy skills and his survival depended on it. I learned to “speak neonatology” to articulate his needs, which was challenging because I’m a Mom, not a medical professional.

Along the way, I’d read books to him, as research studies shows that stimulates brain development in preemies and also helps them bond with parents. Many were bedtime stories that ended with a parent tucking the child into bed at home with Mommy and Daddy. That wasn’t our reality for three months. There were no books about us.

Two years later, when the book was published it became the first-of-its-kind. It’s an uplifting children’s book filled with messages of hope, faith, and love. The illustrations are soft, soothing and colorful, depicting a flower that’s growing and weathering life’s storms until it is big and strong enough to be picked by the gardener, just like a preemie’s journey until they go home. (more…)

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Above the Bikini: There’s More to Women’s Health

Phyllis Greenberger

While we  are (at least half of us) trying to make sense of the election and what it portends for all the issues we care about, there is an issue that we should all be concerned about that was never addressed by the President elect. Sec. Clinton did so on her website, but it  never came up in the debates or campaign ads and was never given any  visibility .  And that is women’s health. No not reproduction, contraception or choice, and while those are clearly  important  and under assault there are other womens health issues not addressed in the run up to this election that are important to all women regardless of ethnicity, age, or political orientation.

When I founded the Society for Women’s Health Research in 1990 women and minorities were not routinely included in research thus results were based on men, usually young, white males.

No one questioned at the time whether those results would apply to women as well. Clearly after the Institute of Medicine report that announced “every cell has a sex” and research needs to be done from”womb to tomb”. A change was necessary in how research was and is conducted to understand how prevention, diagnosis and treatment, including medications and devices may affect men and women and minorities differently. (more…)

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The Future Of The Affordable Care Act In A Trump Administration

This segment originally aired on The Diane Rehm Show on November 14, 2016.

Campaign 2016 Why It Matters Health Care

The HealthCare.gov website, where people can buy health insurance, is displayed on a laptop screen. AP PHOTO/ANDREW HARNIK

Republicans in Congress have voted more than 50 times to repeal the Affordable Care Act without success. Now, they have an ally in President-elect Donald Trump, who promised on the campaign trail to “repeal and replace” the law. But over the weekend, Trump seemed to soften his stance. He told the Wall Street Journal he would consider leaving in place some provisions, including one that prohibits insurers from denying coverage for pre-existing conditions. Guest host Susan Page and guests discuss the future of President Obama’s signature legislation in a Trump administration and with a Republican congress.

Guests

  • Julie Rovner senior correspondent, Kaiser Health News; author of “Health Care Policy and Politics A-Z”
  • Susan Dentzer president and ceo, NEHI (Network for Excellence in Health Innovation), a non-profit think-tank
  • Ceci Connolly president and CEO, Alliance of Community Health Plans; co-author of “Landmark: The Inside Story of America’s New Health Care Law and What It Means for Us All”

Listen: http://thedianerehmshow.org/audio/#/shows/2016-11-14/the-future-of-the-affordable-care-act-in-a-trump-administration/114023/@00:00 (more…)

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Healthcare Reform in President Trump’s America – A Preliminary Look

Jane Sarasohn-Kahn

This post was originally published on 9 November 2016 in http://www.healthpopuli.com/.

Trump-tweet-on-helath-careIt’s the 9th of November, 2016, and Donald Trump has been elected the 45th President of the United States of America. On this morning after #2016Election, Health Populi looks at what we know we know about President Elect-Trump’s health policy priorities.

Repeal-and-replace has been Mantra #1 for Mr. Trump’s health policy. With all three branches of the U.S. government under Republican control in 2018, this policy prescription may have a strong shot. The complication is that the Affordable Care Act (aka ObamaCare in Mr. Trump’s tweet) includes several provisions that the newly-insured and American health citizens really value, including:

  • Extending health insurance to dependent children up to age 26
  • Closing Medicare’s “doughnut hole” (for Medicare Part D which covers prescription drugs for older Americans)
  • Covering people with pre-existing medical conditions
  • Covering preventive services, and
  • Providing subsidies that lower the cost of insurance.

What nobody likes is the direct consumer cost of health care — ACA’s lack of affordability, which was predicated on a competitive insurance marketplace and near-universal sign-ups for health insurance bolstered by a mandate for consumers to purchase insurance. Without these pillars in place, insurance companies have pulled out of local markets where they cannot be financially viable, leaving many consumers with only one choice for health insurance purchasing. Monopoly power in a local market means higher prices. Couple this with millions of consumers opting out of buying health insurance, leaving health plans with a sicker, generally older population to serve. Actuaries in health plans like a more standardized population with young, older, healthy, sick, and demographically diverse to be able to forecast utilization of health care services and, ultimately, the medical loss ratio (that is, patients’ costs incurred in the health plan).

Repeal-and-replace in Donald Trump’s healthcare world could result, in the short-to-medium term, in about 20 million Americans losing health insurance. The Commonwealth Fund estimated that this could increase the Federal budget deficit by between $330 bn to $550 bn over 10 years. (more…)

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VOTE

Today we honor our heroes


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My Dad, the (2016 Election Year) Prophet

Glenna Crooks

Back in the long-ago dark ages of the early 1960’s when I was in high school, my Dad said, “A man can put on a clean white shirt and everyone will say he’s changed. When a woman falls, she falls forever.”

It was his way of warning me of the consequences of an unwed pregnancy. In his mind at the time, that was the worst thing that could happen to a young girl. It would forever change her life’s trajectory and permanently damage her reputation (though not the young boy’s). He was pointing-out a longstanding gender-based double-standard of social life.

There are many reasons I wish my Dad was alive today. Among them, I’d like to talk about this year’s election.
I’d like to remind him of what he said and ask him if now, nearly fifty years later, his observation about the way the world viewed men and women applied to the Presidential Campaign.

I’d ask if the woman candidate was being held to a different gender-based double-standard while day after day, the man – no, pardon me, the men – in clean white shirts have the benefit of the “clean slate” regardless of what they said or did in the past.

I’m not certain what he’d say, but as his words echo in my memory, they have a certain prophetic ring.

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October 2016 Man of the Month: Sen. Joe Biden

Sen. Joe BidenPhotographs by Martin Schoeller

Sen. Joe Biden
Photographs by Martin Schoeller


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“Excuse me, I have requested a download” of health records (watch)

Our August 2010 Man of the Month, “E-Patient” Dave eBronkart speaks. This post was originally published on MedCity News.

“E-Patient” Dave eBronkart speaks at MedCity ENGAGE 2016.

Back in June, Beth Israel Deaconess Medical Center CIO Dr. John Halamka wrote about a certain perceived shortfall in the Meaningful Use “view/download/transmit” requirement for patient engagement in electronic health records.

In a blog post that MedCity News reposted as a MedCitizens contribution, Halamka said:

Meaningful Use Stage 2 has a requirement that I’ve always considered to be the “cart before the horse” — patients must be able to View/Download/Transmit their data. Viewing is great — we’ve done that at Beth Israel Deaconess Medical Center since 1999 for all patients and all data. Download makes little sense since at the moment there is nothing a patient can do with a download. Of the 2 million patients at Beth Israel Deaconess Medical Center, not one has ever requested a download. Transmit makes even less sense since there is no place to transmit the data to.

(more…)


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