The first part of this week we were out in San Francisco for VentureBeat’s first HealthBeat. It was a great event and we were proud to have been a part of it as a media sponsor. For summaries from the various sessions visit: http://venturebeat.com/tag/healthbeat/.

On Wednesday HHS announced that over half of doctors’ offices and 80% of hospitals that provide Medicare or Medicaid will have electronic health records by the end of this year. To learn how/why read the USA Today article.

Kaiser Health News and NPR look at how individuals who don’t have a traditional checking or savings account will get health insurance.

Should smokers pay more for health insurance? Several states have asked and answered this question and several others are considering it now. Massachusetts although not currently allowing a surcharge is open to reconsidering it in the future, read more here.

Politico looks at how Obamacare’s birth control mandate will go before four different appeals courts over the next three weeks.

A New York Times Well Blog post looks at the difficulties women with breast cancer face when undergoing breast reconstruction.

Happy Memorial Day! We hope everyone has a safe and relaxing holiday weekend. In this spirit, the National Council on Skin Cancer Prevention has designated today as Don’t Fry Day. The Council’s goal is to encourage sun safety awareness by reminding everyone to protect their skin while enjoying the outdoors on Don’t Fry Day and every day. Learn more here.

Disruptive Women was proud to participate as a media partner and got the opportunity to attend the event. Below are a few highlights we wanted to share with you!

Do you find it difficult to stay fit while working full time? To remedy this, Keas announced a program called My Healthy Dish and Noshtopia to help employees make wiser nutritional choices and save employers money on health care costs.

In addition to learning sessions and compelling speakers, up-and-coming innovators got a chance to participate in the Grand Rounds Innovation Showdown, an innovation challenge. Beyond Lucid Technologies and Liviam walked away as winners. Beyond Lucid won for the Series A and above, they are the maker of a tablet app for emergency medical responders. Liviam won for the Seed round,  and is a social networking tool for people with serious illnesses.

Can women have it all? Well these moms think it is possible. HealthBeat featured several apps and panels focusing on the successes of women in the health technology innovation field.

Nurses plead, no more bad technology!  Nurses are the glue that holds medical offices, practices and teams together, and they need technology that works. Top CEOs from leading hospitals hosted a panel, educating innovators on the need to create technology that focuses on new, consumer-like user experiences and better end-to-end communications software and hardware.

For more highlights of the conference, visit: http://venturebeat.com/tag/healthbeat/.

I would never minimize the emotion, fear and sincerity inherent in such comments. But, rather than being callous toward suffering, we who oppose prescription death are concerned with the great suffering that may occur as a result of legal assisted suicide.

Vermont recently became the third state to enact “right-to-die” legislation, following Washington and Oregon. However, good law has little or no negative unintended consequences.  Unfortunately, the legislation enacted in Vermont does not pass that test. The potential is enormous for misuse, abuse and coercion.  The legislation was cobbled together seemingly overnight in a last-ditch effort to create a compromise. It contains almost no safeguards, and will undoubtedly expose the most vulnerable citizens to potential abuse.

For example, the law allows a patient whose ability to communicate is compromised, to request the lethal drugs through an interpreter—defined as a person who is “familiar” with that patient’s manner of communicating.  This could be an heir who has financial motives for wanting the person to die before the illness consumes his financial resources.  As any estate lawyer will attest, it wouldn’t be the first time a family member with less than noble motives influenced an elderly person to sign papers that were not in his or her best interest.

Also, once a patient has a prescription in hand, there is absolutely no oversight whatsoever for the collection or the ingestion of the drugs.  Even if a person ultimately decides against suicide—he might be forced or persuaded to take a lethal dose by an unscrupulous caregiver.  There would be no investigation of the person’s death and the cause of death would be documented as the underlying illness. These are just two of the dozens of possible scenarios.

Proponents of assisted suicide say it’s about “choice,” but putting suicide on the approved list of end of life ”treatment” options  will reduce choice  for the vulnerable.  Since Medicare does not pay for long term care, and Medicaid only kicks in when all assets are gone, it’s reasonable to project that poor people without family to care for them may feel they have no other choice but to end their lives in this way, particularly when their doctors present it as a viable treatment option. “Choice” to die quickly becomes “duty” to die.

Another myth promoted by proponents of assisted suicide is that it will be used only by those in extreme pain.  In fact, pain is not among the top reasons given for requesting assisted suicide in places where it is legalized, like the state of Oregon.   Tellingly, fear of being a burden is.

We believe the health care system can do better than to “treat” a suffering person by helping him kill himself.  Palliative care and pain management have come a long way in the past 20 years, but not all people have access to the best that is available.  That must change.  Sadly, as our population ages and the burden on the health care system grows, it will become increasingly more difficult to make that change in an environment where prescription death is an option.  There have been cases in which the Oregon health plan denied treatment for people with terminal illnesses, but offered to pay for their prescription suicides instead.

It’s time to rethink the meaning of “dignity”.  Needing help does not equal loss of dignity, despite widespread attitudes which embrace independence and control among the highest goods.  For the disabled, and for those at the end of life, submitting to the service of others is a reality of life, but it is not undignified.  My own mother is an example.   At age 90, she has advanced congestive heart failure and has been at home, in hospice care, with full time support from her children, since January.   An exceptionally strong woman who raised eight children, has been widowed twice, and has lived alone for the past 20 years; my mother defines independence.   Yet, in her frailty, she has been able to accept gracefully help from the children she raised, giving us the ultimate gift in the twilight of her life by allowing us to serve her in the same way she once lovingly served us.

Herein lies the true dignity.

Carrie Handy holds a Bachelor of Journalism degree from the University of Missouri-Columbia, and is a free-lance writer , journalist and public relations consultant with more than 30 years of experience working in health care and in the nonprofit sector.   A trained hospice volunteer, over the past two years she has been actively involved in advocating and caring for several terminally-ill relatives, including her mother. She is a board member of True Dignity Vermont, a grassroots, citizen-led  initiative that has worked vigorously to oppose assisted-suicide in Vermont. 

Attendees include:

Here’s what a few of the more than 1000 women involved in XX in Health nationally have said about past retreats:

“The power and influence of women in healthcare is amazing and a force to be reckoned with. The XX in Health network is accelerating innovation in healthcare.”

“There is a place for me. I do fit somewhere. Taking with me an amazing new network of connections and ideas for what I want to do next with my life.”

“It’s not about work/life balance, it’s about work/life convergence. Women rock! Rock Health rocks!”

XX in Health, an initiative of Rock Health, began as an informal lunch and dinner series in San Francisco, growing out of the recognition of the dearth of female founders, CEOs and other leaders in healthcare.

• While women make up approximately 73% of medical and health services managers, only 4% of healthcare CEOs are women. (Bureau of Labor Statistics, 2010 Fortune 500 websites)
• Of the 18 Surgeon Generals, only 3 have been women. (Surgeongeneral.gov)
• In 2012, of venture-backed digital health startups who raised 2 million dollars or more, 3 had female CEOs.  In 2011, none did. (Rock Health Digital Health Funding Database)

By uniting emerging and experienced women leaders across the healthcare ecosystem, we aim to change and improve healthcare through building relationships and partnerships to foster greater gender diversity in the space.

We would love to have you involved! Complete this brief form to nominate a female leader in health for one of the few remaining spots at XX Retreat DC.

I was empowered! The more I learned about the risks we faced as women in the upcoming election, the more horrified I became. I wondered how deeply my life would be affected if Roe vs. Wade was overturned. Free birth control was so equalizing, it didn’t seem real. Women’s reproductive health choices were so precariously balanced—not in my hands, but in the hands of a government that so fearfully wanted to turn things back to how it was decades ago! In the meantime, slut-shaming caught fire in the news, especially in response to Sandra Fluke’s speech to Democratic members of the House regarding the importance of requiring insurance plans to cover birth control. Simultaneously, Slut Walks were happening all over the world.

In conversations about the word “slut,” all of its meanings and threats, we realized that disassociating from the popular meaning was a crucial point to the empowerment of women. The popular meaning disparages a woman who “looks” promiscuous and completely dismisses a woman who is sexually liberated. The Slut-kerchief Project came to life from these conversations with other women who were equally fed-up with the politics and the low societal bars.

Though I like that this project is open to interpretation, it is safe to say that a slut-kerchief serves as a symbol and reminder that the word slut is just a word. It is the goal of the project to ignite discussions about how fear of being considered a slut or appearing sluttish affects and quiets women in unacknowledged ways.

Please visit slutkerchiefproject.com to meet some of the folks engaging with the project and to learn why they have chosen to be involved.

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Geana Sieburger is a designer, maker, and teacher living and working in the San Francisco Bay Area. She received a BFA in Sculpture with a focus in Textiles from California College of Art. Her creations at GDS Cloth Goods–her Oakland design studio–are about utility and beauty that is evoked through process, quality, and simplicity. Sieburger is diligent in engaging in feminist dialogue and projects such as the Slut-kerchief Project that raise awareness on issues relating to women’s rights and social freedoms.

As for me, I prefer the more immediate, but no less exciting, frontiers that modern, cutting-edge technology is making possible.  In the field of health care, for example, we don’t have to wait for an era in which a Starfleet Command exists in order to see entire populations achieve better health and longer lives through devices that only existed in imagination as recently as a decade ago.

This week, Disruptive Women in Health Care is a proud partner of the HealthBeat Conference in San Francisco.  What’s particularly interesting about HealthBeat is that it spotlights how health care is being transformed by visionaries who don’t necessarily have M.D. behind their names.  Smartphone app developers, experts in wireless and remote sensing technologies, digital information revolutionaries, big data geeks…these are the people who are playing key roles in elevating health and well-being to an entirely new plane.

The theme for the HealthBeat Conference is “Smart Hospitals, Smart Patients, Smart Health Care,” but, when you look at the developments taking place in the health and medicine sphere, I think it would be more accurate to say we’re transitioning into an era of genuinely Intelligent health care (transitioning, as we still have a ways to go).  Yes, doctors, nurses, hospitals and patients are increasingly relying upon evidence-based protocols and using health information technology to achieve system efficiencies, but the intelligent health care revolution will go well beyond those improvements.

The most exciting changes we’re seeing are expanding the consciousness of health and well-being beyond the hospital and the physician’s office into our homes, our workplaces, our schools, our cars — everywhere we go and in everything we do.  Just as technology delivers information to our doorstep and makes the world a smaller place, the ability to live healthier and prevent illness is increasingly within our immediate reach.  Interesting, the next frontier in health care isn’t in some distant universe, but in bringing a wealth of health knowledge to our immediate surroundings.   It’s Health in Place or as we like to say, HIP (learn more about HIP here).

Bringing the best minds of Silicon Valley and other technological strongholds together in San Francisco this week may be viewed by some as an unorthodox way to improve health care, but it reflects the realization that digital and wireless breakthroughs and other technologies, when combined with innovative models of care delivery can transform the whole idea of population wellness.  (I know, I know, it’s also about payment and regulation but strides are being made there too).

At HealthBeat, we will be learning how the next generation of electronic medical records have the potential to achieve the audacious goals we have been hearing a lot about lately; how behavior change and patient engagement across the generations (you know, the over 50 crowd) can be more than a passing trend (you know, something sustainable with proven outcomes); how markets can be seeded to incent technology gurus to innovate for all populations and demographics (you know, mobile health for the underserved); and we will be hearing more about Qualcomm’s Tricorder X Prize.

So while the movies may tout the excitement of going where no person (sorry, Trekkies, it’s not only “man” who can engage in space travel) has gone before, the real thrill is being seen in the new health care frontiers that we’re discovering more rapidly than we could have ever imagined.

In other news, the Washington Post reported on the possibility that cancer patients and others taking pricey drugs might pay even more for their medications under ACA.

An interesting study of Medicaid recipients in Oregon found that increased health care spending had a limited impact on improving people’s health. Learn more here.

Although more young adults have the option to stay on their parents’ health insurance, they still may have a hard time getting certain services like mental health, substance abuse and maternity care covered. Kaiser Health News has more details here.

Kaiser also had an interesting article that looked at how some doctors are transforming how they provide care.

Once again doctors and nurses are disagreeing over what nurses’ roles should be; learn the specifics on this argument in a Kaiser Health News article.

There is good news for retired or retiring couples… according to a study by Fidelity Investments a 65-year-old couple retiring this year would need $220,000 on average to cover medical expenses. This is an 8 percent decrease from last year.

Finally, there were two interesting articles about women in power. The first, in Bloomberg, looked at how much less women CEOs in Washington make than their male counterparts. Then, Forbes had an interesting and informative interview with Judy Faulkner, Founder & CEO of Epic.

Why is it that when men are impotent it is taken seriously, but when women suffer from sexual dysfunction it is ridiculed and attributed to “Big Pharma’s” attempt to conjure a condition so they can make and sell a drug?  If Pharma is so bad, why do we depend upon them to research and manufacture drugs to prevent and treat cancer?

Why do we hope that one of the companies will be successful in developing a drug to prevent, delay or treat Alzheimer’s disease? Do you give your child an antibiotic when they have strep or do you ignore it? If there is a pandemic whom do we turn to?

Full disclosure, my non-profit organization, the Society of Women’s Health Research (SWHR), credited with changing the face of medicine and the definition of women’s health, receives support from Pharma and our success could not have been possible without it.

Not too long ago, illnesses such as restless leg syndrome, fibromyalgia, chronic fatigue, and PMDD were derided as made-up conditions by “Big Pharma” – until they weren’t. So if a condition is recently recognized and diagnosed, but hasn’t been previously recognized by the medical establishment or the media who covers them, then they don’t exist – until they do.

The Society for Women’s Health Research was established in 1990 to improve the health of women to focus on all conditions that differently, disproportionately or uniquely affect women. Our focus is women’s health. All women’s health includes quality of life, and sexual health is an important part of that.

When it comes to sexual health, for many but not all women, when they reach menopause or later, they may experience vaginal atrophy, also called atrophic vaginitis, a thinning, drying and inflammation of the vaginal wall due to the body having less estrogen. Usually this occurs after menopause but it can develop any time your body’s estrogen production is low; it makes intercourse painful and can interfere with healthy urinary system function. And what happens when your partner is taking Viagra or Cialis, and you are experiencing pain? What effect does that have on your marriage?

Sexual dysfunction is defined as a disturbance in or pain during sexual response, and can present itself in various ways. The problem is more difficult to diagnose and treat in women, due to the intricacy of the female sexual response, and can consist of various physical and psychological components. According to William F. Young, Jr., M.D., M.Sc., President of the Endocrine Society, lack of interest in sex is a real problem for women. In studies, 40 to 60 percent of women will report a sexual problem and the most common is low sex drive.  Has anyone seen the myriad of ads on TV for testosterone to enhance male sexuality? Talk about a double standard.

Side effects are an important concern for women sexual health therapies.  Let’s see what they are in relation to side effects for Cialis, the male erectile dysfunction drug. Osphena’s most common side effects are hot flush, vaginal discharge, muscle spasms, excessive sweating. As with all side effects, some or none may appear.

Side effects for Cialis are headache, indigestion, back pain muscle ache, nasal congestion, flushing, and limb pain. Cialis side effects also include blindness.

It is amazing that no matter how much new research comes out from the Women’s Health Initiative (WHI) concerning the risks and benefits of hormone therapy, the media consistently gets it wrong.  The notion that hormone therapy was discredited a decade ago is inaccurate and not current with the research.

The WHI asked one question and one question only: did hormone therapy prevent heart disease in older women? The answer was NO.  But when the research has been re-examined, which it has, the key variable is timing. Younger women in premenopause or perimenopause actually experience a protective effect on heart disease, and the incidence of breast cancer seems to decline with estrogen alone. The jury is still out on whether combined estrogen progesterone increases breast cancer.

We know it does not increase mortality. Recent papers in both the Journal of Women’s Health, reporting on a scientific roundtable convened by the Society for Women’s Health Research, to reexamine the WHI as well as new research since the WHI to afford women the information they need to make decisions, as well as along with the Journal of the International Menopause Society (IMS) determined that the benefits outweighed the risk.

Let’s not forget that the combined therapy used in the WHI is no longer used. The dose is now much smaller and there are a number of other hormone therapies and different methods of delivery. Still much research is needed and many questions are unanswered, but the original panic apparently was unsubstantiated.

We must stop being blind to women’s sexual health conditions. They are just as important as men’s sexual health, and remember, it takes two to tango.

But in our current toxic and polarized political environment, there are few opportunities for real discussions about major life-altering issues. Facts about Social Security, Medicare, retirement security and health care are being drowned out by partisan bickering and posturing.  That’s why we decided to examine the state of 21^st Century advocacy, to look at the innovative ways people – particularly women – are using new technologies to make progress.

The report is in part a look at how women will succeed inside and outside the nation’s capital. It highlights local, national and global success stories. We write about unusual partnerships and bipartisan problem-solving and the difference increased participation by women can make in the public sphere.

At last week’s briefing on the report, we heard more detail about why and how women make a difference. Pollster Celinda Lake talked about her recent research that found 80 percent of women agreed on 80 percent of the issues. Women are more likely to look for public-private partnerships, consensus building and problem-solving in politics.  Since 1984, they have consistently registered and voted in higher percentages than men.

Women have also embraced social media, making them ideally positioned to increase their presence. A recent Pew Research Center report found that 70 percent of all women are on Facebook, with the main purpose of sharing information. The ever-increasing array of tools makes it easier for us to share, to draw on the cognitive power of millions. We can contribute to the global discussion from our living rooms; we can take action on behalf of someone thousands of miles away or across the street.   As Celinda put it, “we used to be excited about five minute tapioca pudding; now we’re excited about five minute advocacy.”

Do you know what I am talking about?  earPlanes are these little earplugs that were created by Cirrus Healthcare products to reduce ear pain when flying.  The device consists of a silicone earplug and a ceramic pressure regulator.  As a frequent flyer, I use them on every flight. They cost $8.00 a pair and are worth every penny.

Before I found out about these nifty little things, I was suffering frequent ear infections post flight and could not hear very well due to ears that would not “pop” for days.  This was quite a problem.  It is hard to speak well if you cannot hear well.  Also as a person with high co-pays and no prescription coverage treating the subsequent ear infections was getting to be quite expensive.

I posted my problem on Facebook and one of my friends alerted me to the wonder that is earPlanes.  I admit I was somewhat disappointed that my doctor never suggested such an affordable preventive option.  (By that point I already spent over 500 dollars on my air flight-induced ear infections.)  Perhaps she did not know about this option, so I am blogging about it in the hope that fellow travelers can have a less painful journey.

If you read the above paragraphs you might realize why I am writing about earPlanes is not to help Cirrus Healthcare Products.  I want to help my friends and fellow travelers.  You might also realize there were two brands enclosed in the above testimony: earplanes/Cirrus Healthcare Products and Regina Holliday.

This post on the meaning of branding was inspired by a cold call request made by Andrew  from PM360 Magazine.

“I am with PM360 Magazine, a monthly publication for pharma marketers. We also send out a monthly e-newsletter called Panorama. Every month in the newsletter we ask our readers a questions about a new topic, and then we publish the responses we receive in an article in the next month’s edition. I thought that this topic might interest you as a patient advocate.

Trend Talk: Patients as Brand Advocates?

Social media has created a web of readily available brand advocates. For the most part, these are just regular people who are talking about the stuff they like and in doing so are influencing their social circle to also purchase that product. Now, new companies are emerging that are attempting to measure a person’s influence on social media. These companies, such as Klout and PeerIndex, do not only analyze a person’s influence and give them a score, but they work with brands to help them promote their products. For instance, high influencers can be given a discount on a new product or just given a sample to try out. Then it is up to them if they want to tweet or post about it—obviously the brand hopes they like it enough to recommend it. While this model may work for consumer packaged goods companies, is there any way pharma could take advantage of this kind of data and do something similar? What is the best way that pharma marketers can work with patients to improve their campaigns? What are some of the most unique or interesting ways that you have seen pharma companies work with patients to help get their message out there? Email your responses… by May 14.

For the most part, we are only looking for a few sentences from each contributor. I thought you may want to contribute something from the patient’s point of view. Let me know if you have anything to say on this topic and are interested in responding.

Thanks,
Andrew”

This request bothered me in its tone and scope, so I thought I would respond online and invite all my patient advocate friends to respond as well…

Do social media much?  The tone of this request is very off if you follow the ins and outs of social media.  Klout and PeerIndex were launched almost 4 years ago and that is rather ancient on the internet.  Also, I have never seen anyone in my social network utilize Klout  “perks:” the commercial tie-ins to brands.  I checked out PM360’s internet presence and it is a little sparse for a marketing magazine.  They have 134 connections on LinkedIn, 65 page likes on Facebook and on Twitter they have 1,553 followers.  I think some of the questionable tone of this request is due to inexperience in Social Media and too much exposure to the traditional group-think in marketing.

“While this model may work for consumer packaged goods companies, is there any way pharma could take advantage of this kind of data and do something similar?”

A word of advice: Don’t ever ask a patient activist how you can take advantage in the realm of patients…

“What is the best way that pharma marketers can work with patients to improve their campaigns?”

Most patients in the social media space were just regular people who began to speak out.  In many cases they did that out of pain.  Just as a cattle’s brand is seared upon his flesh, the patient’s brand is seared upon their soul.  The patient may brand themselves with their formal name: Regina Holliday, a modification of said name: e-PatientDave, a created name: Afternoon Napper or the name of the organization they have created: Colontown.  They complete this painful process to spread their message be it focused on patient data access, patient empowerment or disease specific research and funding.

So the primary brand in such discussions is the brand of self and those in marketing are interested in tagging along for the ride.  Well, before you join my crazy life ride; I need to know something about you.  I may sing the praises of earPlanes without ever meeting anyone from Cirrus Healthcare (10 followers on Twitter) based on satisfaction of the product.  But I bet I would be even more appreciative if I was able to engage in active discussion with Cirrus staff who shared on Twitter.  We like to thank folks personally for the good work they have done.  When we work on campaigns in social media we expect the support to be like a friendship: it goes both ways.

“What are some of the most unique or interesting ways that you have seen pharma companies work with patients to help get their message out there?”

If you want to see a good example of pharma social media look at Lilly Clinical Open Innovation or @Lilly_COI on Twitter.  They talk with us.  They attend our tweetchats. They even wished me Happy Birthday through a retweet last week.  @Lilly_COI may not have a ton of followers, but they understand social media is not about using patients.  Social media is about working with people.

The folks @Lilly_COI have done a great job at helping patients get the patient message out.  They attended and helped sponsor The Partnership With Patients Summit in Kansas City last fall and even hosted an unconference session on clinical trials and patient experience.  They actively retweeted what patients had to say and helped the conference hashtag trend on Twitter.   That is what you meant by “to help get their message out there?” Correct, Andrew?  You wanted to know how pharma could help get the patient’s message out?

Well, those are my thoughts, but I would love for folks to respond to Andrew in the comments section of this blog or on the PM360 twitter account.

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This post was originally published on Regina Holliday’s Medical Advocacy Blog.

A company called Myriad Genetics holds the patent on the BRCA gene and is the only company allowed to test for it. The question of whether a company is allowed to patent a gene has been a hugely controversial issue. A lawsuit brought against Myriad a few years ago by plaintiffs represented by the ACLU has ended up in the Supreme Court and is being considered now.

One of the reasons that more people are taking notice of this issue – and perhaps the most important reason to many people in terms of its practical implications – is cost. Because Myriad is the only company performing the test, it has a monopoly and can set the price accordingly. The going rate is over $3,000 – a fact that Jolie said in her op-ed “remains an obstacle for many women.” If you are considered at-risk, meaning you have close family members who had breast or ovarian cancer at a young age and have a familial heritage generally associated with this gene mutation, it is likely that insurance will cover the cost of the test. But what if you are uninsured or underinsured?

In 2008, a POV film called In the Family explored the questions – both philosophical and practical – brought up by gene patenting. Filmmaker Joanna Rudnick, who herself tested positive for BRCA 1 and was diagnosed with early stage breast cancer in her 30s, approached Myriad and put these questions to Mark Skolnick, the company’s founder. (You can see a clip of the interview below, and read more about Joanna Rudnick here.) His take on it was mixed. He was adamant (and seemingly defensive) that he had every right to patent a gene, that research companies would never be able to do their work and save lives if they didn’t have that right, and that the backlash against gene patenting was crazy. But he also conceded that the cost eventually needed to come down to make the test more accessible.

It has not worked out that way so far. Actually, the cost has gone up since In the Family came out, and although Myriad offers some financial assistance for low-income patients, the price is still prohibitive enough to pose a major disparity problem. Besides cost, a number of other potential problems have been brought up. The threat of patent infringement could get in the way of doctors offering personalized medical treatment based on a patient’s genetic makeup. It could be a roadblock to information sharing that would allow for future discoveries. In addition there is the most basic question and the one most difficult to pin down: is there such thing as a patent on a naturally occurring phenomenon like a gene?

These questions and more will be considered by the Supreme Court this year. Disruptive Women will continue to report on this issue, so stay tuned… and for an interesting watch, check out In the Family on PBS.org.

Watch In the Family: Interview with Dr. Mark Skolnick on PBS. See more from POV.

Since then, while a woman’s right to control her personal reproductive decisions has been enshrined in constitutional law, it has been far from safe from politicians who are determined to control women and erode our bodily autonomy. Lawmakers in Virginia and across the country have been quietly chipping away at Roe v. Wade for years, and seem to have discovered the “secret” to successful elimination of safe, legal abortion — albeit not through the Supreme Court.

Anti-choice politicians understand that without access to reproductive health care (including safe, legal abortion) the “right to choose” becomes nothing but a right in name only. Their agenda is simple and brilliant — while Roe v. Wade may remain on the books indefinitely, they know that burdensome restrictions on birth control, abortion and accurate sex education will make it difficult, if not impossible, for women to exercise their fundamental right to equality, bodily autonomy and reproductive choice. If clinics close and access dissipates, Roe v. Wade becomes little more than a 40-year-old court case.

In Virginia we have witnessed firsthand the danger of attacks on reproductive access — and the devastating effect they have on women, men and families. Two weeks ago, these attacks were on full display during the Virginia Board of Health meeting, where after a two year saga the Board voted to approve Targeted Regulations on Abortion Providers (TRAP) that could force the majority of Virginia women’s health centers to close. The newly-enacted regulations require all of Virginia’s 19 abortion providers to comply with building standards designed for the construction of new hospitals and required of no other existing outpatient clinic. Renovations to comply with these rules — regarding the width of hallways, number of parking spaces, and mandated drinking fountains — could run into the millions of dollars and are cost-prohibitive for many.

Virginia’s TRAP regulations, like those seen in Mississippi, South Carolina and elsewhere, are part of a national anti-choice strategy designed to shutter clinics & restrict access. Although billed as a means to “protect women’s health”, these politically motivated regulations have absolutely nothing to do with improving patient care and everything to do with forcing Virginia’s abortion providers to close. They are a back-door ban on abortion, plain and simple. And last week, they claimed their first victim.

NARAL Pro-Choice Virginia was absolutely devastated to learn that Hillcrest Clinic in Norfolk Virginia, after providing thousands of Virginia women safe, legal abortion for more than 40 years, was forced to close its doors last weekend. After 40 years of exemplary service (and despite overcoming years of protests, arson, a pipe bombing and an attack by a man wielding a semiautomatic weapon) Hillcrest was shuttered last weekend due to TRAP regulations — and the overwhelming $500,000 price tag required to comply.

This closure is exactly what Virginia’s anti-choice politicians (and supporters of TRAP) intended. Without Hillcrest, an estimated 1,500 women will be forced to travel farther and pay more for their constitutionally-protected right to safe, legal abortion care. For some low-income or particularly vulnerable women, Hillcrest’s closure represents a complete elimination of choice. While the law may grant legal abortion, these women will have no means of accessing the options technically available. Without access, there is no choice.

What’s worse, we know the dominos are just beginning to fall. All but one of Virginia’s existing clinics fail to meet the regulations, and according to the Washington Post, fifteen of the remaining providers estimate their combined costs of compliance at $14.5 million. Some of our women’s health centers will survive these regulations, but many will not. And as the doors of our clinics close, so do Virginia women’s options.

That’s why, even as we celebrate 40 years of Roe v. Wade, it is critical to remember that as far as we’ve come, we still have a great deal of work left to do. Access matters — and it is on this battlefield that the next 40 years of the fight for women’s health and rights will be waged. We are committed to ensuring that Roe v. Wade is more than just a court case, and more than just a platform. Together, we work to make choice a reality for all women.

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Alena Yarmosky is Advocacy and Communications Manager of NARAL Pro-Choice Virginia. As such, Alena oversees the organization’s internal and external communications, and manages their advocacy, electoral, and issue-based campaigns. She also works closely with NARAL Pro-Choice Virginia’s political action committee and its many volunteers and student activists.

An article in Florida Today looks at how doctors in Brevard County, Florida have turned to nurse practitioners for help in dealing with the primary care shortage.

Shelia Burke and Bill Novelli authored an op-ed in Politico that discusses how advanced practice nurses can help improve care while lowering costs. They say, “Utilizing APRNs provides the fastest and most cost-effective strategy for meeting the health and health care needs of millions more Americans. That’s why legislation is pending in 14 states to unleash the potential of nurse practitioners.”

A Kaiser Health News article examines what California is thinking about doing to address the impending coverage expansion under the Affordable Care Act. California is one of 15 states that is thinking about passing legislation that will expand the scope of practice for advanced practice nurses.

The following two articles are more for nurses. The first looks at the top iPhone apps for nurses.  The second is a blog post written by a nurse that we think nurses will appreciate reading.

Finally, take a look at this infographic developed by HRSA that tells nurses’ stories about how they develop quality care through innovation.

Happy National Nurses Week! And to all our readers who are mothers, Happy Mother’s Day!

Jack Needleman, PhD, FAAN is Professor of Health Services in the Department of Health Services at the University of California, Los Angeles (UCLA) School of Public Health, where he is Director of the department’s PhD and research master’s programs.

His research, which focuses on nursing and quality, has been nationally recognized. Specifically, his work on hospital nurse staffing and patient outcomes won the first AcademyHealth Health Service Research Impact Award, and his work on nursing performance measurement was used by the National Quality Forum in its Nursing Care Performance Measures Project. He led the evaluation of the Robert Wood Johnson Foundation’s initiative Transforming Care at the Bedside, providing insight on how frontline staff-led quality improvement efforts influence patient care and the organization of work on nursing units. He helped design the evaluation’s strategy for measuring impacts on safety and reliability, workflow, work environment, and patient-centeredness of care. He is Co-Principal Investigator on the evaluation of the VA Nursing Academy, studying its impact on faculty recruitment, nursing class sizes, and nursing education.

In an interview about his research with AHRQ’s Morbidity and Mortality Rounds on the Web, Dr. Needleman said, “What I knew from looking at the literature and what I think the public understood was that nursing is physically and emotionally demanding work. What I think the public didn’t recognize, and what I came to appreciate as I talked to people during the early analysis, is that it’s intellectually demanding work. This whole issue of being able to observe your patients, assess them, anticipate how they’re doing and what could be going wrong, and take appropriate intervention steps requires a high level of training. I have also come to appreciate that nursing, even for the frontline staff, is managerially complex work.”

This is the type of statement that needs to be made about nurses. Just as important is the need for more research like Dr. Needleman’s that can lead to statements like the above.

Disruptive Women isn’t the first to recognize his commitment to nursing. In 2007 Dr. Needleman was made an honorary Fellow of the American Academy of Nursing.

For what he has done and continues to do for the nursing profession we are pleased to name Jack Needleman this month’s Man of the Month.  And to all our nurse readers, Happy National Nurses Week! Thank you for all you do for your patients and the health care system. Disruptive Women salutes you!

Nurses are at the bedside with the critically ill and the first to respond to unforeseen disasters. They are public health leaders, school counselors, educators, researchers, and front line health care providers in rural and remote communities. They help us safely deliver our babies and provide aid to the elderly. 

It’s certainly not an easy profession, but the rewards are immense. As a nurse, you have the privilege of helping people through important times in their lives. While the job can be physically and emotionally demanding at times, a nurse focuses on the importance of caring, healing, and putting the patients first. The impact can be profound because a nurse has the ability to see what’s happening on the ground and use that experience to become an advocate for the sick, fragile, and underserved on an individual and systems level. As a nursing student, I have been constantly inspired by the courage and resilience demonstrated by colleagues, patients, and families.

Thank you nurses for helping us all lead fuller and healthier lives. Happy Nurses Week!

First, I want Marilyn Tavenner RN, PhD confirmed as the Administrator for CMS. She has the experience and she has earned a chance to make her mark on the agency. If confirmed, she will need nursing’s support, constructive criticism and wisdom.

Secondly, I want nursing’s contribution to successful, quality-focused and cost-effective chronic care management to be recognized and reimbursed at the appropriate level. Numerous studies show the central role of nurses in implementing critical components of the chronic care models. Nurse innovators such as the University of Pennsylvania’s Mary Naylor have designed transitional care protocols that actually keep people out of hospitals and improve their lives. Recently in the Washington Post Ezra Klein reported that another positive experiment where nurses are largely at the forefront, Health Quality Partners, is in danger of being shut down. Nurse case managers have reduced hospitalizations by 33% and cut Medicare costs by 22%. So what gives?

CMS has the power to grow these programs without tons of regulations as a result of the new health law. Do we have the will as a nation?

My third gift would be for every hospital system (small and large) to look at its Board of Directors and make sure there is at least one, if not more nurse leaders, among the group.

Same goes for health care think tanks and foundations, government health commissions, regulatory bodies and health care businesses. Much talent is being wasted by old ideas of physicians at the top of some food chain. Nurses need to step up to plate, seek new skills sets and dive into making health care patient centered at all levels.

So save the chocolate and flowers for another day and please grant my three wishes.

Jayne is an entrepreneur, pursuing the kinds of niche needs that – at their core – are the underpinnings of the discoveries in biomedicine that we depend upon to heal us when we’re ill. She’s one of many, I’m sure, but is one of the best (I’m sure of that, too). She not only works in the ‘trenches,’ but often goes there first and digs them herself to support the many others who will come later.

Her most recent effort, Curious Young Writers, is the latest of her (ad)ventures in supporting healing endeavors. In my book, Covenants, Inspiring the Soul of Healing, I say that anyone who touches health care in any way is a healer. Jayne certainly qualifies.

Jayne Mackta

Jayne, I know you’ve been at this for a while. How can you continue to be so willing to tackle seemingly impossible problems and shove aside the barriers that others find defeating?

Jayne Mackta: I have been an advocate for biomedical research my entire adult life. As the mother of a child with Gaucher’s disease and secondary pulmonary hypertension, I know the issues and have dedicated myself to helping patients and families affected by genetic disorders. That’s why I served as President of the National Tay-Sachs & Allied Diseases Association for seven years. I also helped organize and lead the Alliance of Genetic Support Groups with founder Joan O. Weiss. That national coalition of consumers and professionals evolved into what is now the Genetic Alliance.

My interest in discovery also led me to the New Jersey Association for Biomedical Research (NJABR), where I have served as President for over 22 years.

But you retired, right?

JM: Yes and no. I retired from NJABR, but not from a number of other ventures.

Currently, I publish a quarterly E-Zine called The Enrichment Record and am CEO of Global Research Education & Training (GR8), a portal for providing of world-class training wherever animal research is conducted.

Though I launched Curious Young Writers (cYw) during my time at NJABR, and even though I retired from NJABR at the end of last year, I continue to run the cYw program and plan its expansion. Since its scope is evolving beyond the limited mission of NJABR, I am planning to move it to States United for Biomedical Research (SUBR). This new blog host is a 501(c)(3) organization whose member organizations promote public understanding of biomedical research, and many have educational programs directed at high school students and teachers. That makes it a natural fit.

Curious Young Writers is what I’m curious about. What is it?

JM: cYw is a student-run blog. High school science students become story-tellers, communicating compelling stories about the unusual animal models used to help solve enduring medical mysteries.

Using the power of “story”, students are responsible for every aspect of the blog. That includes everything from researching the research to checking for credible, current citations and links.

Originally conceived as a way to tell the story of unusual animals used in biomedical research through the lens of young writers, this was initially a summer writing project. It has now evolved into a multi-dimensional collaborative initiative of far-reaching significance.

Pamela Brown Rutledge, Director of the Media Psychology Research Center, sums it up well: “Stories are about collaboration and connection. They transcend generations, they engage us through emotions, and they connect us to others. Through stories we share passions, sadness, hardships and joys. We share meaning and purpose. Stories are the common ground that allows people to communicate, overcoming our defenses and our differences. Stories allow us to understand ourselves better and to find our commonality with others.”

Why a blog?

JM: The idea for a blog came from a focus group of students I convened to explore ways to grow the original project. A retired biology teacher who had just completed her term as president of the National Association of Biology Teachers (NABT) coordinated this fledging cyber experiment with the help of science and language arts faculty from two New Jersey research- and technology-focused high schools.

A high-school junior created the role of Chief Student Writing Editor for her independent research course, which allowed her to work on the blog during school time and receive credit as well as daily guidance from faculty. The technical aspects of managing the blog and social media were handled by an IT Editor at a different school.

Officially launched in December 2012, cYw has posted stories featuring golden retrievers (research in Duchenne muscular dystrophy), black bears (research in osteoporosis) chincillas (research in otitis media), armadillos (research in leprosy/Hansen’s disease), and the Arabian horse (research in SCID).

Essays written before cYw was created are now being re-purposed as part of a “Critical Thinking” Challenge (CT Challenge) where students are invited to comment on the story and submit questions that could help advance research. CT Challenge #1 focuses on rainbow trout and liver cancer.

What’s in it for the students?

JM: cYw provides the students with an authentic learning experience that stimulates critical thinking and creative skills of value for future career development and job placement. This summer, 16 new writers from five NJ high schools will generate blog content for posting during the 2013-14 academic year.

Students appreciate the opportunity to be published in a credible online forum, expand their resume and acquire 21st century skills. And, they’re paid. We provide a modest stipend for each blog entry and pay the Chief Writing and Technical Editors.

Our blog strikes a responsive chord among students (and teachers) who want to be part of something meaningful beyond the classroom. cYw activities fall outside the purview of the regular public school curriculum. In our cyber academy, teachers aren’t constrained by the growing demands to “teach to the test,” which, unfortunately is the only measure of scholastic achievement.

We plan on growing cYw into a Curious Science Collaborative — an interdisciplinary high school STEAM initiative that enables multi-functional student “creative transfer teams” to communicate information about biomedical research in different ways to a general audience that is largely science-illiterate.

Designed to promote workforce readiness in the 21^st Century, the Curious Science Collaborative will encourage students to excel in the art of science communication.  We envision this collaborative functioning at the intersection of science, technology, the visual and the language arts. Students with various skills and talents will work in teams where they contribute their particular skills and knowledge to the development of a compelling digital story about medical research. Stories will have extensions such as podcast interviews with researchers; animations; videos; original graphics, charts, and photographs. Our goal is to make bioscience accessible.

You’ve mentioned STEAM. What’s that?

JM: STEAM is STEM expanded. STEM education includes science, technology, engineering and math. To that, the “A” in STEAM adds the Arts. It takes into account the many ways we learn and the importance of stimulating both left and right brain development.

STEAM taps into tomorrow’s innovators… students who are curious, motivated and full of wonder about the world around them. Pardon the pun, but we are moving full-STEAM ahead and welcome anyone eager to lead us in new and exciting directions. These students are doing a really good job of that.

One final question. I know you’ve been learning Mandarin, have traveled to China and have developed relationships with academic institutions. When is your next trip and what will you be doing this time?

JM: I’ll be in China for three weeks this summer. This is the third year of a five-year agreement with the Shanghai Vocational & Technical College of Agriculture & Forestry to provide an intensive introduction to laboratory animal care and use for students pursuing careers in biomedical research. I bring western trainers with me for the didactic and hands-on sessions and teach English as a Second Language (ESL) and ethics myself.

Everyone loves it when I try to speak Mandarin. First they applaud. Then they laugh … a lot.

Thanks, Jayne. All the best and travel safe.

When I was in my teens and twenties, I made the choice to spend a lot of time in the sun. I lived 15 minutes from the beach and made it a priority to go there as much as possible in the summer. If I couldn’t get to the beach, then I would put my beach chair in the backyard, deck or driveway. I loved the sun. I would sit and relax and read for hours. It felt great. I am not going to deny that and pretend that I didn’t like it, or that I thought I looked better with a tan. I definitely did.

I used a tanning bed a couple of times but ultimately decided against it. Why would I pay for something that I could get for free? Plus, I am slightly claustrophobic, so the whole idea of enclosing myself in a burning capsule did not appeal to me. They smelled funny too and kind of grossed me out.

This is the thing about tanning. I feel that most people are not making informed choices. The message has either not reached them yet, or they have not educated themselves about the risks, or they are just simply ignoring it. The fact is that tanning is bad for your skin. Period. End of story. It may give you a summery glow and make you feel prettier or more attractive, but it causes significant damage and can result in skin cancer. Oh, and it can happen to anyone regardless of race and skin color. Again – fact. (For a complete list of UV-related facts, please see the Melanoma Research Foundation’s website – www.melanoma.org.)

Now some people will get lucky and tan all of their lives and not get skin cancer. Sure – that can certainly happen. Someone can smoke all of their lives too and never get lung cancer. Here is the difference though. Every single one of us knows that if we put a cigarette in our mouths that we are increasing our risk for cancer. It has taken 30 years or so, but we now know it. The companies who make the product know it as well. That is why they have to put warning labels on their packaging. This is where we need to be with tanning beds. Ban them for minors and put warning labels on them. For those of legal age, let them know about the risk, so they can make an informed choice. Give them that opportunity. If they still decide to get into the tanning bed, then fine. At least they know the risk.

We are lucky to live in a free country. We can’t force someone to do something that they don’t want to do. What we can do is help to educate and encourage. This is what MG is all about. Planting the seed about embracing your skin just the way it is. It may take 30 years, but hopefully we can start moving away from the idea that we look better when we are tan. It needs to be a change in mindset and behavior. And we need to do more than just ban tanning beds. Why? Because the 16 year old who is not able to go to a tanning bed, but still wants to be tan for her prom, can just go out in the backyard and lie in the sun. She may be out there for hours. In certain cases, especially if she burns, this can be even worse than using a tanning bed. Therefore, MG’s messages of SPF – Sexy Pale Female, Realize the Risk and Be Sun Savvy are meant to embrace an overall approach to being safe in the sun.

I realize that some may say that if I hadn’t had melanoma I would not be pushing this agenda. They might be right. I will be honest and admit that sometimes I do miss the feel of the sun on my skin and the long days on the beach. When I look at old pics of myself with my super summer tan, I get a little twinge of nostalgia. But was it worth it? Unequivocally NO (thank you significant scars for that constant reminder). If I had known the facts, I could have changed my behavior. I could have avoided surgeries and chemotherapy. This is why I share my story and try to educate and encourage others about the risk. So that you can make better choices than I did. Informed choices.

I am very optimistic that as awareness for melanoma increases, the amount of people who choose to tan will decrease. We can return to an age where pale skin is celebrated. Coco Chanel started the tan craze 90+ years ago. I think her time is up. Let’s start a new trend.

KNOW THE FACTS. MAKE A CHOICE. AN INFORMED ONE.

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Melanoma Girl is a Boston native who spent LOTS of time on the beaches of Massachusetts and Rhode Island during her teens and twenties. In her late thirties she was diagnosed with stage 3 melanoma that had spread to her lymph nodes. Now, at the age of 41, she is a three-time cancer survivor. MG’s mission is to be melanoma’s #1 awareness advocate through fundraising, MG-branded apparel, and prevention education.

This post was originally published on melanomagirl.org.

Can you say care coordination? An article in the Washington Post earlier this week highlights the continued need to push for it in hospitals as it is still lacking, to the detriment of patient safety.

Earlier this week the Obama administration made headlines when it approved over-the-counter sales of the Plan B morning-after pill for ages 15 and older. A Washington Post article explains why the approval made headlines and had several women’s health advocates confused.

The VA is working on ensuring it can provide women veterans the care they need and deserve. Read how they are doing this here.

NPR’s Shots Blog details how and potentially why suicide rates have increased in middle age adults. The reasons are interesting. One thing is for sure, attention needs to be paid to mental health at any age.

We’ve all wondered and now we have an answer… Doctors are nicer to patients who aren’t fat. At least that is what a new study found. Read the article in NYT’s Well Blog for more details.

Finally, an article that might bring welcome news for some women. This New York Times article looks at recent expert advice that says pelvic exams might not be needed for all women.