Carol Schechter

The following is a guest post by Carol Schechter, a leader in the field of health communication and social marketing. You can follow Carol on twitter @carol_schechter.

Last week was a bad week for the Susan G. Komen Foundation. On Monday, they were still an iconic charity; the group that successfully put women’s health issues in the public eye and the group that forever changed our associations with the color pink from babies to breast cancer survivors.

On Tuesday, their world changed. On January 31, AP broke the story that Komen decided  to stop funding Planned Parenthood, allegedly because Planned Parenthood was under Congressional investigation.   Social networks erupted with the news, and the world started to learn a lot about the workings of the Foundation: that the Komen VP behind the defunding decision was  tea party Republican who had long been opposed to Planned Parenthood; that Komen also opposed stem cell research; that a significant amount of Komen funds went to law suits against other charities that dared to use the phrase “for the cure” in their campaigns; that the decision to defund Planned Parenthood wasn’t shared with Komen grass roots chapters until after the announcement; and that many of these chapters opposed the decision when they learned of it. Komen started back pedaling quickly, first stating the real reason for the decision was not the Congressional investigation, but was because Planned Parenthood didn’t offer mammograms as a direct service. Excuses kept coming, but the damage was done. By the end of the week Komen reversed its decision and said Planned Parenthood was once again eligible to apply for grants. Then they engaged their PR firm.

This is not a PR issue, however. I respect good PR, but PR can’t fix a flawed organization.  Komen is a huge corporation. Since 1982, they have spent more than 1.9 billion dollars on breast cancer research.  An organization of this size needs leadership, vision, values and good management. 

My message to Komen- please go back to basics. Who is in charge? What do you stand for? What is your mission and what are your values?  You have done so much good for women – please don’t insult us by hiding behind PR.  You can gain back the respect you once had, but only by honesty, self reflection and hard work. Women’s health needs a trusted organization. Please give breast cancer survivors the organization they deserve.

The Heart Truth®—a national awareness campaign for women about heart disease.

Organized by the Foundation for the National Institutes of Health (FNIH) as part of The Heart Truth’s American Heart Month festivities, “Friday, February 3rd is National Wear Red Day®, on which Americans wear red to show their support for women’s heart health.”

National Wear Red Day® is only the beginning, though. One of The Heart Truth’s signature events, The Red Dress Collection Fashion Show is also held during American Heart Month, as a kick-off to New York Fashion Week. This year’s show is being held Wednesday, February 8th. You can learn more and see highlights from last year’s Red Dress Collection Fashion Show here.

American Heart Month, National Wear Red Day®, The Red Dress Collection Fashion Show and all of The Heart Truth’s other initiatives, events and activities serve to further one objective — increasing awareness about heart disease among women and helping women take steps to reduce their own personal risk of developing heart disease. To learn more about the organization and its mission or find out how you can get involved, check out The Heart Truth’s website, Facebook page and Twitter profile.

The Disruptive Women in Health Care blog continually aims to encourage discussion and debate among readers about emerging issues and topics in the health care world. Historically, one of the ways that we have done that is through our weekly round-ups – that is, posts containing summaries and links to some of the big stories in health care news for the given week, with some original commentary and content sprinkled in as well. The way we see it, there is just too much happening in this burgeoning industry; it’s hard to keep up, especially when you’re busy disrupting and making headlines in the health care world yourselves. We know the weekly round-ups have been on hiatus for a while, but are happy to report that they’re finally making a comeback. Each week, we’ll be gathering some of the biggest health care news you can use from at home and abroad for posting on Wednesdays. Feel free to comment on what’s included and send us some links to articles to be considered for next week!

Has your week been too disruptive for you to keep up with the news?  Disruptive Women are on the case!  Here is this week’s round up of some of the most pressing issues here in America and around the world.

Here at Home:

Thanks to a provision of the Affordable Care Act (ACA), women are now able to receive free birth control, but only if it’s prescribed.  The New York Times explains how Catholic Colleges are using this loophole to combat contraception.

And, speaking of the Catholic Church and the ACA, USA Today says that Obama’s decision on Friday not to expand the conscience exemption to include religious institutions has been met with outrage from Church leaders and parishioners.

Remember that moment of panic you had when the swine flu epidemic came to the United States?  CBS News reports that swine flu numbers are rising again in Mexico. Will the US be next?

Susan G. Komen for the Cure, the nation’s leading breast cancer charity, announced Tuesday that it is halting its partnership with Planned Parenthood (per NPR) – a controversial decision that ignited a backlash from some of its supporters.

Here’s one perspective on Komen’s decision. What do you think? Will this impact your decision in giving donating to Komen, or another breast cancer non-profit in the future?

Sick? Took a sick day?  Is that enough of a reason for you to wind up unemployed?  HuffPo explains how an issue as simple as recovery from the flu has reached the Supreme Court.

With nearly two million women lacking health insurance and a quarter of a million unplanned pregnancies per year, Florida has a lot of challenges in terms of women’s healthcare.  Here’s what the state is doing to try and move ahead.

Around the World:

Brazil is calling for a registration of all pregnant women.  What does this mean for a woman’s right to choose within Brazil?

Japan’s population is shrinking. As more women choose a career over family, Japan faces declining birth rates. Could the United States be next?  ABC News takes a look.

Check back each week for the latest health care news!

There is, however, one area we don’t touch (in fact, we avoid it at all costs): partisan support for a candidate. While certainly all of our individual bloggers have opinions and perspectives, points of view and inherent biases, we will never run posts that are blatantly promoting one candidate for elected office over another.

I say this as a caveat to this post, the purpose of which is to announce a new series we’ll be running this year on the Disruptive Women in Health Care blog in which we explore the presidential candidates’ positions on health care and health policy, where they stand on particular aspect or aspects, what they envision to be an ideal health care system for this country and what role they envision the federal government playing in it.

This series is about more than just the Sustainable Growth Rate (SGR), the Affordable Care Act (ACA) or Medicare and Medicaid; it is about delving into each candidate’s philosophies, beliefs and stances towards health care and health policy, and trying to determine what specific policies and reforms each might undertake.

Image courtesy of the Mobile Press-Register.

The editorial team and I are very excited to be launching this series, as we feel it will provide us the opportunity to address important issues during a significant year from a much different perspective and in much greater detail than the mainstream media is likely to discuss.

You can expect to see a lot of substantive political and policy analysis being put forth via the series in the coming weeks and months, but like I said earlier — one thing you definitely won’t see is bias towards one particular candidate (though our posts will certainly contain links to articles from other outlets that may or may not be biased, because we feel it is important to provide a survey of what others are saying on the topic). Help us make the series even better by letting us know what topics or specific policy areas you would like to see explored – we’ll do our best to incorporate your feedback into upcoming installments.

We’ll be back with our first full installment of the series in the next few weeks, but in the meantime, we’ve rounded up some related articles we think are worth reading:

• CNN takes a look at claims of Medicare fraud being made against Mitt Romney by a pro-Newt Gingrich super PAC
• NPR explores “Romney’s unlikely and persuasive defense of the ‘Individual Mandate’”
• WaPo discusses Rick Santorum’s position on abortion in the context of his personal experiences

If you chose to partake in what HuffPo referred to yesterday as “ your country’s empty displays of patriotic kitsch” — aka a State of the Union Drinking Game — last night, I certainly hope health care wasn’t one of your buzzwords.

President Obama delivered his 4^th State of the Union (SOTU) address to Congress last night, outlining his goals and his priorities for the nation in the coming year, and – as Sarah Kliff from the Washington Post’s WonkBlog put it  – “For health policy wonks, Tuesday night’s State of the Union speech wasn’t a thriller.”

In fact, in his nearly 70-minute, 7,000 word address, “President Obama mentioned Medicare and Medicaid… once. ‘Health care’ got two shout-outs. The Affordable Care Act? Not even a name-check,” (per Kliff).

To think of it another way, consider how Daily Briefing editor Dan Diamond broke it down — the president spent 44 words on health reform, accounting for 0.6% of the total speech.

As Politico pointed out, “Obama spent so little time on the [health reform] law that he didn’t even acknowledge an audience member the White House had brought to the speech — a cancer survivor who could have been an example of someone with a pre-existing condition who was helped by the law.”

The White House had announced earlier Tuesday that this young man, Adam Rapp, would be sitting in the first lady’s box. Rapp was diagnosed with testicular cancer on his 23^rd birthday, the same day that he would have lost health insurance coverage were it not for the Affordable Care Act (per CBS) – a potentially powerful testament touting the impact of ACA, and yet one that went unmentioned.

All of this is more staggering when you consider what a departure it represents from years past.

Medscape Medical News reports that, “Obama mentioned either “healthcare” or “health insurance” only 3 times, compared to 6 references in 2011 and 10 in 2010.”

The California Healthline blog lays it out a bit differently, explaining that, “Two years ago, the president spoke for several minutes — a total of 570 words — in urging Congress to pass the Affordable Care Act. Last night, Obama devoted just 44 words to his health reforms — never once touting the law’s actual impact, like 2.5 million young Americans gaining coverage through the ACA. In comparison, the president spent more than 130 words on his renewed cause of streamlining the government.”

And for you visual learners and/or infographics enthusiasts like myself out there, Dan Diamond tweeted this graphic a few hours ago, which I think best serves to drive the point home.

Wondering what Obama spent 70 commercial-free minutes talking about, then? According to the Washington Post, the economy mostly. Check out WaPo’s interactive infographic breaking down the speech by time spent/mentions per subject, and how this year’s spread compares to his previous SOTUs, here.

Meanwhile, the GOP rebuttal, delivered by Indiana Gov. Mitch Daniels, was only marginally better to us health wonks – at least for our interest’s sake. While it steered clear of “repeal and replace,” it did echo Rep. Paul Ryan’s pitch for an overhaul of entitlement programs.

“Medicare and Social Security have served us well, and that must continue. But after half and three-quarters of a century respectively, it’s not surprising that they need some repairs,” Daniels said. “We can preserve them unchanged and untouched for those now in or near retirement, but we must fashion a new, affordable safety net so future Americans are protected, too.”

No one would deny that the SOTU, above all, is an act of political theater. But were there even more theatrics occurring last night than usual? Many Beltway insiders have seemed to indicate this, saying that the SOTU was not only a list of goals for the year, but also, as Kliff put it, “an opening campaign gambit.”

If that is the case, it raises some interesting questions about what we can expect to hear in the fall. After all, as The Hill’s Healthwatch blog pointed out, “Although Democrats insist that Obama will be able to campaign on the healthcare law, it was almost entirely absent from a speech that helped establish the themes and frames of his reelection campaign.”

Just because the president seems to be steering the narrative away from health care so far doesn’t mean it won’t be issue in the upcoming presidential election. Odds are that the Republican nominee – whoever it turns out he (or she… hey, you never know!) may be – will want to discuss health reform, as it has certainly been a hot topic on the campaign trail.

How important of an issue do you think health reform will be in the upcoming election? Will a candidate’s position on health reform and the Affordable Care Act impact your decision to support him or her? Tell us your thoughts in the Comments section below!

Millions of Americans disapprove of the Affordable Care Act without understanding what the act aims to accomplish or how it works.  Dr. Jonathan Gruber’s book “Health Care Reform:  What It Is, Why It’s Necessary, How It Works” breaks down the individual components of the act in order to give Americans a greater understanding of what all it includes and how its provisions will affect their daily lives.  Gruber discussed the book, ACA and the future of health care reform in the United States with an audience at Disruptive Women in Washington, DC last night.

Continue reading here…

So far we have seen women as victims of gender inequalities, but how about the role that women have as perpetuators of these inequalities? In many developing countries mothers, wives and teachers have a high acceptability of behaviors that maintain disparities between genders. For example, in some countries mothers teach their daughters that they have to cook and clean the house while their sons can keep playing. So when these daughters become mothers they assign their children the same roles, perpetuating this cycle. Mothers in some settings decide to favor her son over her daughter to attend the school and university. In some areas this is also true for health. In rural areas parents may sell their cow to pay the medical treatment of their sick son but they will not do this if their daughter gets sick.

Studies have shown that women with lower socioeconomic status and education are more likely to hold on to traditional ideas that perpetuate gender inequalities, and also more likely to perpetuate such ideas in the younger generation. For all of these reasons, it is important that in future awareness campaigns we place women not only as victims of inequalities (which gives them a passive role), but also as perpetuators of these inequalities.

My question to all of you is…Are we (as women who work for women’s rights) working to end the cycle of women as perpetuators of gender inequalities? Should we start by changing our own minds and own approaches towards interventions to decrease these inequalities?

She has epilepsy and since November is Epilepsy Awareness Month, this is the perfect time. Please allow me to introduce you to Jessica Keenan Smith.

How do you hope Epilepsy Awareness Month will help?  

More than 70 Million children and adults worldwide are living with epilepsy. Three million of them are in the US. That’s more people than were living with HIV/AIDS in 2008. I’ll bet that surprises most people.

Of those 70 Million, for 70% there is no known cause. A little research money would go a long way toward reducing that 70% number and then to finding better treatments, and my highest hope – cures. More awareness will help drive more research funding and scientific  interest in this important area of health. That’s why an Awareness Month is helpful.

Many diseases have been around for centuries, but they have treatments – even cures. Why hasn’t epilepsy enjoyed that same happy ending?

Well, let’s start with the fact that you can’t even tell that most people with epilepsy have it unless they are actively having a seizure. Then combine this with the fact that a negative stigma still exists. Add in the fact that there are more than 40 different types of seizures and you’ve got a tough nut to crack.

These factors make epilepsy very difficult to recognize, never mind research and cure.

October is the month we focus on breast cancer awareness. I was stunned at your comparisons between epilepsy and breast cancer.

So was I when I first learned about it. I was surprised to discover what we do know – that is, the prevalence and mortality for epilepsy – are the same as for breast cancer. It means that each year in the US 200,000 people are diagnosed with of breast cancer and that is the number diagnosed with epilepsy as well.  It means that each year 45,000 people die from breast cancer and the same number die as a result of seizures.

Yet, the national research funding for breast cancer is five times greater than for epilepsy. An awareness month can help bring some more equitable spending to the national research venture.

How have you been able to be such a presence and use your voice on behalf of those with epilepsy?

Increasing awareness about epilepsy and providing a voice for the people who struggle with it are what I am passionate about.  It took lots of work to get to this point.

As a woman with epilepsy, it took me a long time to get out from behind the stigma. I was diagnosed more than 25 years ago but it wasn’t until recently that I began actively speaking out.  That’s when I founded Living Well With Epilepsy.

I shouldn’t let it go without saying that my husband and daughter support me in continuing to use my voice in this way. When I’m working on a project, they have to remind me to do the laundry or walk the dog – but they do it with a gentle ribbing instead of getting mad. I’m just so lucky to have them.

If readers want to take some action during Epilepsy Awareness Month, what do you suggest?

There are several things they might do and I hope they will:

• Go to the Living Well Gear Shop (cafepress.com/livingwellwithepilepsy) to get epilepsy awareness gear.  The proceeds from the shop go toward epilepsy awareness and research.
• Support a local Epilepsy Foundation.
• Write to local, state and national government officials and representatives about the importance of epilepsy research funding.
• Check in with Living Well With Epilepsy at http://livingwellwithepilepsy.com). There’s so much more to come throughout this month and I’ll be posting it there.

I’ll confess that I’m not exactly sure what to do if someone has a seizure.

That’s common. Even if people have heard of epilepsy, they seem to always be at a loss for what to do when someone has a seizure. Part of the reason is that directions on how to handle a seizure are not included in Red Cross, work- or school-related first aid classes. In general, only those with EMT, nursing, paramedic or medical education backgrounds know. In fact, I’d like to know how someone like me could go about turning that ship around. Until they do change their courses, here is what you should know:

• Don’t put anything in their mouth.
• Remember the 4 C’s: stay Calm, Clear the area, Comfort the person, and Call 911.

Thanks Jessica. 

In addition to being a wife and mother, Jessica also has a day job. Today’s posting gave me the chance to introduce her. She writes, blogs and is an expert in niche marketing. Her site http://livingwellwithepilepsy.com has become resource for people all over the world affected by epilepsy. If you want to know her better, she can be followed at http://twitter.com/#!/jessicaksmith and found at https://www.facebook.com/livingwellwithepilepsy. She can also be found at www.Feministing.com, www.Disaboom.com and other news outlets. Her original epilepsy awareness designs can be found at Living Well Gear Shop. To connect across social media you can find her on @jessicaksmith, Facebook.com, and LinkedIn.com and she can be reached at livingwellwithepilepsy@gmail.com.

Non-communicable diseases (NCDs), which include cancer, cardiovascular disease, diabetes, lung disease, and mental health are one of the greatest health and development challenges of the century, responsible collectively for 2/3 of all deaths worldwide. Though all people the world over are susceptible to the threat of these chronic diseases, this is a women’s health rights and empowerment issue because these diseases impact girls and women differently. At the same time, women are a crucial part of the solution to this crisis.

Arogya World, World YWCA and other organizations have joined forces to form the Women for a Healthy Future movement. We are mobilizing women and men from around the world to sign a petition demanding that world leaders reduce the vulnerability of women and children to NCDs.

As advocates for women’s right to health and empowerment, we call on the world leaders during the forthcoming United Nations High Level Meeting on NCDs to consider the following critical factors related to women and NCDs:

1. NCDs have a direct impact on women’s health
NCDs are the #1 killer of women. A staggering 50,000 women lose their lives to NCDs every single day. More than 1,000 women die from cardiovascular disease, one of the four main NCDs, every hour.

Women are uniquely affected by NCDs. New research published in The Lancet (Aug 2011) shows that for women, especially pregnant women, the harmful effects of smoking are even higher than for men. When it comes to coronary heart disease, smoking is 25% more dangerous for women.

In the developing world, the effect of NCDs on women is even more pronounced. Women comprise 60% of the world’s poor, and poverty worsens chances of survival from NCDs. Women in developing countries also cook daily over open flames, and as a result acquire NCDs like Chronic Obstructive Pulmonary Disease. How can we allow 1.9 million people a year — mostly women and children in developing countries — to die because of everyday cooking?

2. NCDs impact women as caregivers
Women and girls play a critical role in caregiving. At YWCAs around the world, we have seen that when someone at home falls sick and needs extensive care (as is usually the case with chronic NCDs), it is the girls and young women who stay home to provide care. These women fall behind in school, miss work, or are forced to accept lower paying jobs because they need the flexibility to provide home care for a sick family member. Even if a woman doesn’t suffer personally from an NCD, she is often drastically affected.

3. Women are disadvantaged with regard to prevention
While 80% of cardiovascular disease and diabetes and 40% of cancer are preventable through stopping tobacco use, increasing physical activity and improving diet, often these prevention efforts are not accessible to women. When women make up 2/3 of illiterate adults, they are at a great disadvantage to even learn about prevention. Moreover, social and cultural taboos sometimes restrict a woman’s engagement in physical activity, because sport is considered ‘unfeminine.’ We believe that access to sports and physical exercise is not only a right in itself, but also a catalyst for development, leading to the empowerment of women and girls.

4. NCDs are an integral part of maternal and child health
Since low birth weight predisposes a baby to get diabetes and cardiovascular disease later in life, it is imperative that we educate pregnant women about good nutrition during pregnancy. In fact, some scholars believe the key to the entire NCD crisis lies in ensuring good health for adolescent girls, before they become pregnant, so that they can have safe and healthy pregnancies and give birth to healthy babies of normal birth weight.

5. NCDs impact the next generation
While women are rightly concerned about the health of other women, they are fiercely concerned about the health and futures of their children. Children have a right to health. They deserve a dynamic future full of hope and happiness, a future where they can live their dreams and become productive world citizens. Aggressive marketing of tobacco products, junk foods and sugary drinks, and alcohol to children and young people is threatening that future. When the future of our children is at stake, women must take action.

The Promise of Women
It is sad that we still have to fight for the basic human right of women and children to good health, despite all the commitments to the world’s women contained in the Beijing Platform for Action, CEDAW, and many other regional and national commitments. But, the truth is that on our watch, in our lifetimes, NCDs have exploded. We must do something about it. This is our responsibility.

Today, we have a chance to to take positive steps in securing women’s health rights. Join us at Women for a Healthy Future. We are calling on all the people of the world, women and men to sign our petition and forward it to other personal and professional networks. On September 19 and 20, world leaders will convene at the United Nations for a summit on NCDs, the second ever UN summit on global health in history. We seek to gather 10,000 signatures to our petition, and we promise to bring your voices to those gathered at the United Nations to ensure that women’s rights are included in the key decisions.

When the world takes care of women, women take care of the whole world.

TEAL is on trend this September. Not only is teal a top fashion color for fall 2011, it’s the color of ovarian cancer awareness—and September is national ovarian cancer awareness month. Here’s how you can help raise awareness of this disease.

To support ovarian cancer awareness you can get involved in the Ovarian Cancer National Alliance’s United States of Teal campaign. The goal of the campaign is to have every state in America teal—which happens when state legislators pledge their support for ovarian cancer awareness. Twenty-four states are already teal—visit www.unitedstatesofteal.org to see if your state supports women with ovarian cancer.

The website also shows how you can contact your state legislators and urge them to pledge their support to the ovarian cancer community. We need your help to raise awareness of the symptoms, and expand federal research to improve treatments and support the development of a desperately needed screening test.

In 2011, more than 21,000 women will be diagnosed with ovarian cancer and 15,000 will die from the disease. If ovarian cancer is treated before it has spread outside the ovary, the five-year survival rate is 93 percent. Tragically, only 19 percent of ovarian cancers are found at such an early stage, which is why it is so important to make women aware of the potential warning signs.

There is no screening test for ovarian cancer, so the Alliance stresses that “until there’s a test, awareness is best.” The symptoms of ovarian cancer are vague and often confused with other medical conditions. Experts recommend that women see a gynecologist if they experience any of the following symptoms for more than a few weeks:

• bloating
• pelvic or abdominal pain
• difficulty eating or feeling full quickly, and
• frequent or urgent need to urinate.

You can also show your support for women with ovarian cancer by wearing teal on Friday, September 2. Wear Teal Day helps raise awareness of this deadly disease.

To learn more about the United States of Teal campaign, visit www.unitedstatesofteal.org. For more information about ovarian cancer or the Ovarian Cancer National Alliance, visit www.ovariancancer.org.

But there was another line in the blockbuster movie that moved me even more. I heard it and the heavens seemed to open. The light bulb came on.

Hilly Holbrook’s new maid is $75 short on one of the college tuitions for her twin sons and asks Hilly and her husband for a loan so she doesn’t have to choose which son should go to college. Doing the ‘Christian thing,’ Hilly refuses, “God does not give charity to those who are well and able.”

Twelve simple words from a fictional 1960’s character summed up our nation’s current political will regarding the poor. And allow me to condense this into just one word: selfishness.

We movie-goers were quick to see the bigotry in Hilly’s statement. The maid and her husband had been saving money from their meager wages for a long time and she wasn’t seeking a hand-out, but a loan she would pay off with her thankless labor. But I was also quick to see the hipocracy in those of us who identify ourselves as Christians regarding the poor–many like this maid are in temporarily tight spots by no fault of their own. I was convicted by the thought that a selfish Christian is just as much of an oxymoron as a Christian murderer.

We use the word Christian so loosely nowadays, especially in politics. Calling ourselves Christians is not just the politically sexy thing to do. It is bearing the responsibility to personify the totality of God’s word and value every stage of every life, even the poor. Perhaps our selfishness is rooted in fear, more specifically, fear of shortage. We are so afraid that assistance to the poor robs us, but the Bible is clear that it is better to give than to receive (Acts 20:35) and we will never lack giving to the poor (Proverbs 28:27). Now I’m not suggesting that Christians are obligated to give to any and everybody. We must be good stewards over what we’ve been blessed with and use wisdom, but we must never forget we have been blessed with what we are stewards over. None of it truly belongs to us.

What makes giving complicated is when the poor is undeserving for reasons we determine in our own minds. With the issue of Medicaid, for example, we are quick to point to the rare cases of system defrauders. But for every story of fraud, there are at least nine stories of genuine need.

The Institute of Medicine, the trusted, non-political council advising the nation on ways to improve health, recently released “The Healthcare Imperative Report” on how to lower health care costs and improve outcomes. The Institute thoroughly studied excess costs in our health care system and identified six domains of excess spending: unnecessary services, inefficiently delivered services, excess administrative costs, prices that are too high, missed prevention opportunities and fraud. Want to guess how much waste is due to fraud? Less than you think. Only 10 percent. And that figure includes fraud at the hands of payers, clinicians and patients, so patient fraud represents only a fraction of health care waste.

I got ticked off… Oh, pardon me… I was greatly disturbed this week while speaking with a cousin who attends one of Columbia, SC’s most prominent churches. After the August 5-6, SC Mission 2011: Midlands event that served more than 2,000 uninsured from around and outside the state, a water cooler conversation at the church included appalling accounts of some people in line for services using iPhones. The nerve of those beggars!

Thankfully, my cousin was quick and correct to point out that many of those in line were among the working poor. SC Mission 2010 in Greenville, SC, for example, drew 1,200 of the state’s underserved to the Carolina First Center. Forty-four percent were employed, tax-paying citizens. My co-worker even received a call from an area city councilman inquiring if his uninsured family of four (wife, two teenagers and himself) could come for services at the Midlands event at the Carolina Coliseum.

These are realities, but we citizens have made it too easy for our elected officials to turn a blind eye and deaf ear. In an attempt to heighten awareness of these realities to policy-makers, the South Carolina Hospital Association sent personal invitations to Mission 2011 to more than 400 elected officials in federal, state and local government. Guess how many showed up? Two. Republican SC House Representative Todd Atwater who also serves as President of the South Carolina Medical Association and volunteered at Mission, and Democratic SC House Representative Leon Howard. Two, I said! One Republican. One Democrat. Zero from the Tea Party. Zero Independents. Zero from local government. Zero from the federal government. Raise your index finger, then your middle finger. Two. They could have at least followed the lead of Columbia, SC Mayor Steve Benjamin who knew he’d be out of town. Mayor Benjamin marketed the event through e-mail and social media.

Maybe if more of our officials had seen the lines of men, women and children forming as early as 10 am the day before the Midlands event began, those camping on the concrete outside the Carolina Coliseum, and the countless people who were turned away due to maxed capacity, these and other social ills would not plague our community as much because policy-makers would be more prone to do the true ‘Christian thing’ and care.

By Saundra Pelletier. In 1965, Griswold v. Connecticut gave a married woman the right to use birth control to prevent or delay pregnancy as she saw fit. This guarantee of a basic human right led to other reforms that allowed millions more American women to decide the direction of their own reproductive lives.  This summer, we are proud to see another key reform go through: starting next year, the Affordable Care Act will allow even more women in the United States to be in charge of their own health by requiring new health plans to provide free birth control without a co-payment. These are hard-fought wins for women’s health and for women’s rights of which we can all be proud, but sadly the ability of a woman to choose when and whether to become pregnant is far from assured in other parts of the world.

Pause for a moment and imagine you’re not American, but from Sub-Saharan Africa – Ethiopia for example. You are 20 years old and have four children – the first of which you had when you were 15 and newly married. You’re worried about becoming pregnant again. You tried to get birth control once, but arrived at the clinic only to find the shelves bare and no way to access any form of birth control.  The thought of another pregnancy, whether by a husband who won’t take no for an answer, or by a stranger who might force his way upon you while making your way to fetch water for the family is overwhelming. You’re not in great health, and another pregnancy would take its toll on your weakened body. The chances are high that you might not survive pregnancy or labor to be able to take care of your family.

Globally, 215 million women would like to be able to prevent or delay pregnancy, but do not have access to the supplies that would allow them to take control of their lives. As American women, we know from our own experience that the ability to make our own fertility decisions has made an immeasurable impact on our own lives. For women in the developing world, access to reproductive health supplies would save lives and improve health, as well as the economic and social well-being of families and communities.

Consider the staggering number that every single day, 1,000 women die due to pregnancy-related complications. Access to contraceptive supplies would mean that unintended pregnancies would drop by more than 70 percent every year. 150,000 maternal deaths would be avoided every year. And 600,000 children would not lose the love and care of their mothers.

Why is it that a private sector product like a Coca-Cola or a mobile phone can get to ‘customers’ yet much-needed health care information and products are beyond reach? This question has perplexed the global health community for decades.

WomanCare Global was founded in 2009 to address the profound problem of maternal mortality that has challenged the reproductive health field. The path is very clear and one word sums up the problem and the solution – ACCESS.  Our “hybrid” model is trying something new – a way of offering women hope because the emphasis is on access to affordable quality products for the women who need them most.  WomanCare Global recognizes the many challenges facing the distribution of healthcare technologies in underserved markets. All too often, pharmaceutical and device manufacturers decide not to invest in low resource settings, limiting product availability in much of the developing world. Additionally, supply-chain gaps keep products from reaching healthcare facilities, providers, and the women they serve.

By identifying innovative reproductive healthcare technologies and utilizing existing distribution channels, WomanCare Global promotes sustainable access to these critical products.

Family planning is one of the most important, cost-effective interventions available in the world today. Every woman, no matter where she lives, deserves access to the lifeline of information and affordable reproductive health products.

This week a true pioneer in women’s health, Dr. Vivian Pinn, announced that she’s retiring from NIH. Vivian was the first Director of the Office of Research on Women’s Health (ORWH) and tirelessly led that office for almost two decades. But she was more than the leader of ORWH, Vivian has brought wide spread attention to the absence of women participants in biomedical research and the exclusion of women’s health in clinical decision-making. She made it her mission to highlight the importance of sex-specific differences in disease development, progression, and response to clinical interventions. She has tirelessly monitored the landscape of health research for women and has led efforts to set the research priorities. She understands that priorities won’t set themselves; it takes a passionate, intelligent, experienced, and insightful individual, with an incredible amount of support, to gather the right folks and figure out what we still don’t know but need to know.

Dr. Pinn has also been a leader in the effort to increase the representation of women in biomedicine and to make sure that women who pursue careers in health sciences have equal footing with their male colleagues. Looking around NIH today and the vibrant extramural community, women are an integral part of the science that goes on across the US. I know that Vivian can remember a time when that was not the case, in fact she sat amongst only white male classmates in medical school in the 1960’s. What a difference we have seen and we owe so much of that to women like Vivian Pinn.

This is a big loss for all of us who have worked with her over the years, but she leaves behind a robust legacy of putting women’s issues on the radar at NIH. Vivian, we wish you the best. We will keep pushing for women’s health and hope that we will make you proud.

Women for a Healthy Future

Non-communicable diseases (NCDs), commonly known as chronic diseases, cause two out of three deaths worldwide, and are the leading cause of death for women around the world.

We have a once-in-a-lifetime opportunity to tackle NCDs, considered to be one of the 21st century’s greatest health and development challenges. In September, world leaders will gather at the United Nations (UN) for a historic summit on NCDs. The decisions they make will impact the lives of millions.

NCDs threaten women’s lives and our children’s future. Yet, we know that 80% of cardiovascular disease and diabetes and 40% of cancers can be prevented by avoiding tobacco, increasing physical activity and eating healthy foods. It’s going to take strong commitments from the world’s leaders and sweeping policy changes to reduce women’s and children’s vulnerability to NCDs.  

As a result, organizations representing global health, women’s health, child rights, and youth perspectives have come together to form the Women for a Healthy Future movement. This movement is aligned with UN Secretary-General Ban Ki Moon’s “Every woman. Every child” initiative and is mobilizing women from around the world to demand action against NCDs.

Raise your voices. Sign the petition. Tell your friends.

If we gather 10,000 women’s signatures, we will take them to the media, to world leaders gathered at the UN, and to business leaders. We need your support to show the world how deeply we care, and to ignite action against NCDs.

The keynote speaker is Olympic medalist Shannon Miller, who will speak about her battle with ovarian cancer. Ms. Miller was diagnosed with ovarian cancer in early 2011, and has been writing about her journey on her healthy living website.

On Sunday night, you can  rock out with N.E.D., an amazing band dedicated to fighting women’s cancer. This alternative rock band is made up of gynecologic oncologists from around the country. You can hear one of their original songs in this video about OCNA’s 2010 Advocacy Day.

The conference concludes with advocacy visits to Capitol Hill. OCNA will arrange for you to speak with your legislators and their staff about why ovarian cancer matters to you. Please note that you must register separately for Advocacy Day; the registration deadline is June 3.

One of the most poignant moments at each conference is the Remembrance Ceremony commemorating the lives of women lost to ovarian cancer. You can submit original poetry and other remembrances to be included in the ceremony.

Register here. If you have any questions contact Elizabeth White at ewhite@ovariancancer.org or (202) 331-1332.

The situation is no different in my state of South Carolina. Last week, one of our state senators referred to South Carolina’s Medicaid program as a “Mercedes health plan.”  Our Department of Health and Human Services responded by saying, “It’s a little bit of a stretch to call it a Mercedes.”

This morning, that same senator posted a guest editorial on FITSNews, “A Hand Up, Not a Hand-Out.”  In this piece, the independent pharmacy manager claims that Medicaid’s benefits are better than those of hundreds of insurance plans he works with.

“Hard working South Carolina taxpayers are forced to pay for premium coverage for others. These same hard working taxpayers could never afford these benefits themselves. Where’s the fairness in that? Welfare programs should be a “hand up” instead of a “handout.” Government assistance should be a temporary benefit instead of a lifestyle.”

The Senator says he and his colleagues in the Senate should focus on those unable to help themselves like the low-income elderly and mentally disabled. He then goes on to give two examples about welfare recipients who would rather get a check than work.

It’s disturbing that one of only six legislators in the entire South Carolina General Assembly with any type of health care experience would intermingle Medicaid and welfare as if the programs are the same. Some confuse the typical Medicaid recipient with the infamous Reagan-era “welfare queen.”  What an outrageous comparison.  Medicaid recipients don’t receive checks.  They receive access to health care services like primary care, prescription drugs, screenings, and hospitalizations.  High-paying-job-producing, tax-paying businesses get the checks and pump billions of dollars into the state economy both directly and indirectly. South Carolina hospitals, for example, employ more than 80,000 citizens, and contribute greatly to our state’s well-being and prosperity. Not to mention all the physician practices, nursing homes, health centers and other providers that do the same.

Let’s set the record straight on these Medicaid recipients seeking a hand-out in South Carolina:

• Two-thirds of Medicaid recipients live in working families, but their incomes are too low to afford insurance,
• Eligible families stay on Medicaid an average of only two years,
• A single parent making just more than $7,000 a year is too rich to qualify for Medicaid in South Carolina,
• And adults without children, regardless of their income, cannot qualify for Medicaid because they are categorically ineligible.

The very people the Senator says are unable to help themselves are the very people Medicaid benefits the most. Though women and children make up 75% of Medicaid recipients, they only consume 33% of the costs. The low-income elderly and disabled make up 25% of recipients, but consume 66% of the costs. Simply put: cut Medicaid, cut your Granny.

There’s this ludicrous idea out there that Medicaid recipients are gaming the system. NEWSFLASH: Ain’t nobody getting rich off Medicaid (improper English intended)! The only Medicaid fraud I’ve heard of has been at the hands of a provider. How would a recipient fraud the Medicaid system anyway? By being so desperate for health care access that they don’t disclose their full income? There are standard documentation requirements and yearly reviews in place at our state Medicaid agency to thwart that. By getting one or two unnecessary colonoscopies? I say that if those extra colonoscopies ‘tickle their fancy,’ more power to them! I kid…

Though I understand that overuse of unnecessary services drains our fragile health care system, I’ve been on the other side of health care enough to know that it’s easy to discuss rationing until it’s your loved one who is in medical distress.  

Our state’s budget debate this year has been laced with several misconceptions about the Medicaid program and its beneficiaries.  The three-to-one federal Medicaid match our state receives was even compared to crack-cocaine. Intended or unintended, that characterization also feeds into the erroneous stereotypes for some of our state’s most vulnerable citizens. 

It is incumbent upon us in health care to take the time to share the facts with decision makers and our communities. We cannot allow persons blinded by political ambition to make these important policy decisions that will impact our communities without our expertise and without hearing the perspectives of those without a voice.

“Take responsibility for your own health care.” That’s the message that Grace, a Disruptive Woman and an experienced patient advocate, wants you to take away from her story. “You have to be your own advocate, but if you can’t, don’t be afraid to ask a family member or friend to step in and speak up on your behalf.”

Grace can speak from experience about being an advocate, both for herself and for her loved ones. In fact, Grace created mymedmanager™ , a personal health care and medication organization system, after her experience as an advocate for her mother. (You can read about this in a previous blog post here). While that experience focused primarily on managing medication intake, Grace’s more recent experience with her husband highlights, perhaps even more poignantly, the importance of taking responsibility for one’s health care.

When Grace’s husband first started shuffling his feet rather than walking correctly earlier this year, this was attributed to a combination of a torn meniscus and aging. When he began suffering from insomnia, stress was blamed and sleeping pills were prescribed. When he showed signs of depression, he was prescribed anti-depressants. When he developed tremors, which he actually described as feeling anxious, yet another medication was added.  While he saw various specialists, no one ever suggested that perhaps there could be a larger underlying problem to explain all these symptoms; that all of these ailments could possibly be interconnected. Grace then started going with him to some of his medical appointments.

At one point, Grace noticed that he had a hand tremor at the same time that he said he was feeling very anxious.  He then asked if she thought it could be Parkinson’s. She immediately went to the computer and did a search on Parkinson’s.  Despite her husband being what many would consider a “textbook case,” as Grace explained, none of the specialists ever put it all together. Every one of his ailments was a symptom of Parkinson’s but each one was treated separately, and there seemed to be a logical explanation for each symptom.

A neurological specialist confirmed that it was indeed a mild case of Parkinson’s.  With the proper medication for that disease and after he is on the full dose, it is expected that some of the other medications will be reduced or eventually eliminated.  Already there is an overall improvement because he is taking the proper medication and beginning to exercise.

As stated, the bottom line to Grace is that you must be your own advocate, ask questions, and seek a second opinion when issues are not resolved. With the abundance of reputable information sources available and accessible online, there is no excuse not to educate yourself about your condition, symptoms, and prognosis. You can then ask intelligent questions and take a significant responsibility for your health care.

Grace reminds everyone that they should not be afraid to ask a family member or friend for help if they are unable or have other concerns about being their own advocate.  Be certain it is someone who will ask the appropriate questions and take notes, if necessary. Misdiagnoses and unnecessary medication intake have serious health risks in and of themselves.  Do your part to ensure that you and your loved ones are getting the best quality care possible by taking the responsibility yourself.

“Morning Glory” starring Rachel McAdams, Diane Keaton, and Harrison Ford is a wonderfully funny movie about the behind the scenes challenges in broadcast news. McAdams plays Becky Fuller, an executive producer charged with revitalizing a failing morning news program. The painfully accurate reality depicted in the movie is that news outlets live and die by their ratings so that we, the viewers, can get the news for free.

So who pays for it? Broadcast, print and web news media is supported by advertising revenue, and the basic business model is straightforward:

• News attracts viewers.
• Number of viewers is monetized.
• News outlet sells advertising space/time to marketers.
• The more viewers there are, the more a media outlet can charge for an ad.

The bottom line is that Viewers = Revenue.

Retaining viewers/readers ultimately requires that media outlets deliver information that is timely, accurate, well-balanced, and engaging. However, attracting them requires that outlets successfully break through the morass of news noise. How do they do that? By grabbing our attention with clever, dramatic headlines and teasing viewers/readers with lead-ins and headlines that are unexpected, outlandish, and extreme. It is a bait and hook strategy that works.

Here’s the problem: Too often, we don’t have the time to read or listen to an entire news clip or article. We merely rely on the headline and, subsequently, we become misinformed. And, when there is misinformation about health-related issues, this can lead to poor outcomes, higher cost, and, very commonly, patient confusion, frustration and disappointment.

Here a few examples:

Headline: “Study Pins Alcohol as More Dangerous Than Crack or Heroin”

Facts: This Lancet-published study evaluated 20 different drugs including cocaine, heroin, ecstasy and marijuana. Each was ranked on three dimensions: physical harm to the individual user, addiction potential, and the societal effect of the substance. The study clearly showed that an individual level, cocaine and heroine are most harmful. But, since alcohol abuse is so prevalent in the population, its high societal impact score inflated the overall score above that of all the other substances. Hence, the headline.

By the way, the author of the article is Professor David Nutt, a former U.K. drug czar who is using the study to argue that the regulatory classification of substances should use an evidence-based rather than a historical approach rather. This was a political article in drag.

The vast majority of online outlets including ABC, CBS, and FOX, had a headline similar to the one in Time, but kudos to The Boston Herald for their responsible but still eye-catching headline: “Dangers of Abuse Sobering.”

Headline: “Botox a Cure for Migraines?”

For the 3.2 million people who suffer with migraine headaches, this headline created a groundswell of hope.

Facts: In this study, Botox for migraines was only tested in patients with 15 or more days of headaches per month. There was no difference in the number of headaches, but treated patients had 1.4 fewer headache days per month. For effectiveness, each quarterly treatment session requires 31 injections of Botox, and the annual cost is about $4000 per year. Individuals with chronic migraines may get some relief with Botox but it is certainly not a silver bullet or a “cure for migraines.” While Botox can be used off-label for those with less frequent migraines, it has not been studied and it is unlikely to be covered by insurance.

Oh, by the way….the new migraine indication for Botox is estimated to add $1 billion to Allergan’s top line within five years.

Headline: “New ‘Vaccine’ for Prostate Cancer”

When I mentioned this headline to David (my gastroenterologist husband) he said, “I want it,” until he heard the facts.

Facts: The Provenge “vaccine” is not preventive at all. This medication is only for men with late stage, metastatic, hormone-refractory prostate cancer. Even for them, its not a cure. The drug extended survival an average of 4.5 months (from 22 to 26 months) and costs $93,000.

So, why is Provenge called a vaccine? It’s a technicality. Each “vaccine” is custom-manufactured using the patients own cells. The infusion does not directly attack the cancer; rather, it triggers an immune response against the tumor cells just like the flu “vaccine” triggers an immune response against the virus. Clever, huh?

And, finally, one of the biggest media/government headline blunders of the decade.

Headline: “Government No Longer Recommends Routine Breast Cancer Screening for Women Under Age 50″

Fact: The headline is only half right. The original recommendationsissued by the US Preventive Services Task Force were published with the following language:

“Women 40-49: Do not screen routinely. Individualize decision to begin biennial screening according to the patient’s context and values.”

I have already pontificated about this public relations mess in a November 2009 blog that you can read here.

What You Can Do

The news media’s financial incentives make it unlikely that attention-grabbing headlines will go away. So, here are a few suggestions to avoid being seduced by the sound-bites:

1) If you only have time to read or listen to a headline, treat the information as if it’s gossip. Fun to read…but let it go in one ear and out the other.

2) Does it sound too good to be true? It probably is. Nevertheless, if you’re intrigued by the story, make the time to read/watch the entire piece.

3) Is the headline interesting enough that you’d mention it to a friend or your significant other? Maintain your credibility. Go to Google Health News, find the story and click on “All News Articles.” Then, select an article published by a national online newspaper such as the LA Times, NY Times, or USA Today. Business Week and Associated Press articles are also consistently reliable. Avoid reading the web articles published by broadcast media (ABC, CBS, Fox, etc), local newspapers, or blogs.

4) If you think the headline may be relevant to your health, do #1-3 above. Then go STRAIGHT to the source. Most of the web-based news media articles link to the published journal article or government site (FDA, NIH, CDC) from which all media articles are based. Read it. You are smart, and you are just as able to interpret it as the journalism or marketing/communications major who wrote the first piece you read. Even if you can only tolerate reading the abstract, you will get an objective angle on the study findings. Finally, if you feel you need help interpreting the scientific data, go to WebMD’s News Home page.  The articles in the center of the page are non-sponsored and subject to WebMD’s editorial review process.

The Internet has democratized the availability of information. New medical research, technologies, and insights are no longer sequestered in the tombs of professional journals, and doctors are no longer the gateway or gatekeeper of emerging clinical knowledge.  But, remember, in every control room is an executive producer saying the same thing as Becky Fuller, “Every single story that we do is gonna have to be sensational!”

Originally posted on November 30th on Archelle on Health.

They go further: “What matters now is whether they are serious about repeal. We voted for you for a reason. We’re counting on you. Fulfill the mandate we gave you,” the doctors urge, referring to candidates who are heading to Congress. It concludes by urging women to overturn President Obama’s government take-over of the health care system and sign the ObamaCare Repeal Pledge. On the Saving Our Health Care.org website, activist training, pledges, updates on lawsuits and much more are offered.

How did sixty years of effort to bring health care within reach for tens of millions of Americans who go now without, to provide coverage for young people on their family’s insurance until the age of 26, to clamp down on discrimination against those with pre-existing conditions, result in what is no doubt an opening salvo from and to the women of our country?

Of course some individual doctors oppose THE PATIENT PROTECTION AND AFFORDABLE CARE ACT but the American Medical Association and most other physician groups support it. Trying to give the impression that women doctors of various specialties, states of the union, ages, races, shapes and sizes unite to oppose greater access to health care is downright dishonest. Ask the American Medical Women’s Association, THE national organization of women docs, who have been strongly supportive.

When I got out of college, hardly a woman was welcomed to medical school classrooms. Fortunately that has changed radically, along with the opening up of many other professions in the decades since. Strongly supportive of efforts to see that the talents of  one-half the population are not wasted, I’ve labored to get women elected to local, state and national office. As a small critical mass of women has been elected to state legislatures, Congress, county and state executive offices, they have tackled long-neglected issues that directly affect the health and well-being of families; I subscribe to the notion that there are differences between women and men and that often women’s world view leads to greater compassion for other humans. So how is it we have a whole organization of women, appealing to women  -with women spokespeople – turning their backs on the uninsured, those with pre-existing conditions, those who will benefit from a more level playing field in the healthcare market? It’s a plan that objective budget and economic experts say will save, not spend, additional funds.

No surprise, I’m for health reform. I do not appreciate it being called ObamaCare, which is meant to disparage and demonize it. And I do not subscribe to the assertion that the election was a refutation of health care reform! Like a Rorschach test, the election results were in the eye of the beholder, but most analysts agree the tidal wave that swept parts of America were about the economy/jobs and anxiety over government spending. I will add that on the government spending issue, oh for a bit of sanity  to oppose continued tax relief for the nation’s wealthiest while seeking drastic cuts in services for the less fortunate.

Perhaps health reform legislation will eventually receive some tweaking, and that might not be so bad. But a campaign to repeal led by women – and paid for by whom – what a disappointing way to start the holiday season. Is the Independent Women’s Forum really so independent? Who is funding this blatant effort? Do these female doctors speak for many other physicians, who pledge first to do no harm?      

If you don’t believe me that the group is proud of what they are doing, check it out with your own two eyes. A website iwvoice.org, which stands for independent women’s voice…”a voice for the mainstream” wants YOU to take the pledge and get involved. If you really are mainstream, and a woman who cares about those without all the blessings that so many of us enjoy, you will look for every means available to oppose this effort.