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.

By Olaoluwatomi Lamikanra. Since the introduction of mobile phones in Nigeria, the number of users has increased exponentially and usage is pretty much found in both rural and urban areas.

With regards to the internet, Nigeria has about 43 million users (total population over 155 million) which far exceeds by more than double the next African country on the list-Egypt.¹

 
There are many projects associated with mobile health in Nigeria and with the exponential growth of mobile and internet users; there is an ever increasing market. Different sectors of the economy which have an impact on the health of the populace also stand to gain a lot from the introduction of mHealth initiatives. Water, Sanitation, Agriculture, Finance and Development are a few of the sectors. In Kenya, the introduction of the mPESA, a mobile phone application where moneys can be sent via mobile phones all around the country has solved the problems of money transfers. No longer do people in rural areas have to wait until someone is visiting from the city before money arrives. They receive the money as soon as it is sent from a PESA center. At a recent WaterHackathon event organised by CCHub in Lagos, one o f the tools suggested for Water development was a mobile system to facilitate the sharing of water resources in hard hit areas.²

Examples of some projects already in place include Mobile Community based Surveillance.mCBS is a mobile platform which is given to Traditional Birth Attendants to report vital maternal and child health indicators in real time using mobile phones. Using texts designed for this purpose the TBA can transmit alerts to nearby health officials who can respond immediately thus reducing delays in reaching appropriate care at a facility.³ Other mHealth projects currently being developed in Nigeria  is being collated by Ime Asangasi (@Imeasangasi- twitter handle) here.

REFERENCES:

1. http://www.internetworldstats.com/stats.htm (accessed 26th December 2011)
2. http://www.cchubnigeria.com/watermeetup (accessed 26th December 2011)
3. http://ehealthnigeria.org/where-we-work/list-of-implementations/mobile-community-based-surveillance-mcbs/

The following is  a guest post by Wendy D. Lynch, PhD the

By Wendy Lynch. In any other industry, minority and elderly discrimination would be front-page news. A recent study confirms elderly and minority customers get higher-cost hospital care than other more affluent white customers and are more often exposed to harmful, even deadly outcomes (1, 2). Fact: care for these patients will cost significantly more, yet their health outcomes and personal safety will be compromised. But in health care, it is not news.

This is the nature of health care disparity. But it reveals an even more troubling issue we rarely discuss: information, choice, and control. Not only do these patients receive substandard, over-priced care (1), they likely don’t even know it! The system limits information, limits choice, and offers patients little control over their options. In this and a subsequent blog, we will explore how lack of choice and control institutionalize the very disparities we aim to eliminate.

Disparities Are Real
It’s hard to dispute the facts; there are huge variations in health status and health resources among U.S. citizens. Comparing the most and least fortunate, differences are evident in every category: prevalence of risk factors and chronic illnesses (3); the availability of high-quality care (2); rates of preventive services (4); rates of premature mortality (5); and regular sources of care (6).

Nor are people surprised to learn that health disparities are closely linked to disparities in income and education (7). Health and health care delivery are worst among ethnic minorities, rural and poor communities, immigrants, and the elderly (7, 8). Despite decades of attention and investment by private and public agencies, the distance between the “haves” and “have-nots” remains as wide as ever (9).

While the persistence of disparity is undeniable, opinions differ about which precursors matter most. Last month’s issue of Health Affairs was dedicated entirely to disparities (10), with varying reports and commentaries about which factors are most predictive of disparities, such as where you live versus who you are, and which policy changes would do the greatest good and produce the greatest improvement for those suffering at the bottom of the disparity ladder. With few exceptions, the focus is on what we can do for them or give to them.

Maybe It’s Time to Revise Our Definition of Helping in Health Care
What if giving people free services that are controlled and funded by someone else is part of the underlying problem? While done with the best of intentions, giving someone what others think is best for them may not be the solution. Consider the Grameen Bank case study: In 2006, Mohammed Yunus won the Nobel Prize for Peace for founding and growing Grameen Bank. Known as the ‘banker to the poor.’

Yunus has been credited with lifting millions of people out of poverty through his approach to microlending. His journey began in 1976 after unsuccessfully trying to apply traditional thinking from his economics degree to solve the severe poverty crisis in his native Bangladesh. He soon observed that many charitable organizations didn’t solve problems in the long run. They simply perpetuate dependence and, worse, divert resources to sustain their own jobs. With charity, the poor had another day of meals or shelter, but no greater ability to provide their own. A generation of charitable, well-intentioned giving had not altered the rate of poverty.

Yunus went to bank managers and asked whether they would be willing to lend money to villagers to start small businesses. The answer was, universally, no. These poor, uneducated borrowers could not be trusted to handle money; the risk of default was too great. So, he began lending his own money, and by the late 1990s, founded his own Grameen Bank. Fifteen years later it had funded almost 10 million women entrepreneurs, many of whom were previously homeless street beggars, created billions of dollars in assets among people who once had none, built millions of homes, helped tens of thousands of children get to college, and established an entire generation of job-creators across the globe. Not one dollar was given charitably; it was loaned for the purpose of starting a business, repaid with interest at a default rate of less than 2 percent, and loaned again. Almost 700,000 loan recipients have gone on to build new homes (11).

The Grameen approach is now alive in the U.S., loaning to almost 10,000 poor, unemployed women who are starting their own businesses and becoming financially independent (12). Globally, microcredit is reducing poverty on every continent (13).

Perhaps the most powerful aspect of Yunus’ approach is his belief that every person has the ability to create a sustainable livelihood for his family, given basic financial backing and social support. Many, many experts said his idea was ridiculous and destined to fail. To those experts, people in poverty needed others to help them, because they could not help themselves. But Yunus saw things differently. Had he not believed in recipients’ innate ability, it never would have occurred to him to lend money to penniless, illiterate villagers living in dirt-floored huts.

The Parallel to Health Care?
Before they became Grameen borrowers, poor women did not learn money, business, and investing skills by receiving donated goods from charities. They learned skills by becoming involved in designing and running their own businesses. The answers weren’t handed to them by an all-knowing outside party. Rather, these women had to decide for themselves what to produce, what to charge, and how to pay on their loan each week. Their rewards: self-sufficiency, pride, financial security, and belonging—and on a larger scale—finally a solution to an urgent humanitarian dilemma.

Today, as recipients of care, the U.S. health system feels more like a charity than the kind of successful business exchange Yunus and countless others have proven can work. Perhaps it feels this way because someone else, the government or a health plan, grants us permission to receive certain services and then pays for those services through external arrangements. The system largely assumes that we, patients, are incapable of understanding our choices, let alone have a chance of making good ones. Even the most educated among us have experienced health care situations where our input was neither requested nor considered; it is easy to feel disempowered.

Policymakers often support efforts to give patients more services: more access, more programs, more screenings, but rarely do we hear a real innovator show interest in giving people more ownership, more choices, and more control over the resources and decisions being handed down upon them.

Medicaid is a perfect example. Patients are not perceived as customers whose business must be earned with high-quality service; rather, they are charity cases for which providers are reimbursed by an outside party. Like villagers before Yunus arrived, the system perceives poor and uneducated patients as incapable, and so we restrict information, choice, and control. The result: disparities. Without control over their choices, poor patients end up exactly where they find themselves today: at lower-quality, higher-cost hospitals, unaware of the risks.

The Answer to Disparity? A Presupposition of Ability Rather Than Inability
When Yunus started, virtually none of his borrowers had any formal education, business experience, or money management skills. Levels of poverty were far worse than in the U.S. However, with minimal training and a small support group, millions of women were able to create, grow, and sustain successful trades with regular income.

Because this model has been repeated in village after village and country after country, we know that self-reliance is not a rare characteristic. If we dare to imagine the untapped potential of our most vulnerable and release preconceived notions about the inherent (dis) abilities of poorer, older, ethnically diverse people, we stand a chance of designing new solutions. With the right support and belief in one’s right to do so, everyone can learn about money, everyone can engage in business negotiations, everyone can make decisions about value. We have the tools to eliminate disparity, but we have to believe in the people we are so desperately trying to help.

In the next blog, we will discuss how providers limit patient choices based on their preconceptions of patient abilities and describe the only way patients can take control.

“Originally published in the Altarum Health Policy Forum.”

References

1.     Jha, A. K., Orav, E. J., & Epstein, A. M. (2011, October). Low-quality, high-cost hospitals, mainly in South, care for sharply higher shares of elderly Black, Hispanic, and Medicaid patients. Health Affairs (Millwood), 30(10), 1904–1911.

2.     Werner, R. M., Goldman, L. E., & Dudley, R. A. (2008, May). Comparison of change in quality of care between safety-net and non-safety-net hospitals. JAMA, 299(18), 2180–2187.

3.     Danaei, G., Rimm, E. B., Oza, S., Kulkarni, S. C., Murray, C. J., & Ezzati, M. (2010, March). The promise of prevention: the effects of four preventable risk factors on national life expectancy and life expectancy disparities by race and county in the United States. PLoS Medicine, 7(3), e1000248.

4.     Partnership for Prevention. (2007). Preventive care: A national profile on use, disparities, and health benefits. Retrieved November 3, 2011, from http://www.rwjf.org/files/publications/other/PreventiveCareReportFinal080707.pdf.

5.     Chen, J. T., Rehkopf, D. H., Waterman, P. D., Subramanian, S. V., Coull, B. A., Cohen, B., et al. (2006, November). Mapping and measuring social disparities in premature mortality: The impact of census tract poverty within and across Boston neighborhoods, 1999–2001. Journal of Urban Health, 83(6), 1063–1084.

6.     Bliss, E. B., Meyers, D. S., Phillips, R. L., Jr., Fryer, G. E., Dovey, S. M., & Green, L. A. (2004, September). Variation in participation in health care settings associated with race and ethnicity. Journal of General Internal Medicine, 19(9), 931–936.

7.     Woolf, S. H., & Braveman, P. (2011, October). Where health disparities begin: The role of social and economic determinants—and why current policies may make matters worse. Health Affairs (Millwood), 30(10), 1852–1859.

8.     Probst, J. C., Bellinger, J. D., Walsemann, K. M., Hardin, J., & Glover, S. H. (2011, October). Higher risk of death in rural Blacks and Whites than urbanites is related to lower incomes, education, and health coverage. Health Affairs (Millwood), 30(10), 1872–1879.

9.     U.S. Department of Health and Human Services. (2011, October 6). HHS releases assessment of Healthy People 2010 objectives. Retrieved November 3, 2011, from http://www.cdc.gov/nchs/data/hpdata2010/hp2010_final_review_press_release.pdf.

10. Dentzer, S., ed. (2011, October). A nation at risk for wider health disparities. Health Affairs (Millwood), 30(10), 1818.

11. Grameen Bank. (2011, August 23). Credit delivery system. Retrieved November 3, 2011, from

12. Grameen America. (2011, September). How Grameen America works: Social impact. Retrieved November 3, 2011, from http://www.grameenamerica.com/how-we-work/social-impact/social-impact.html.

13. Mohindra, K. S., & Haddad, S. (2005). Women’s interlaced freedoms: A framework linking microcredit participation and health. Journal of Human Development, 6(3), 353–374.

Dear Colleagues,

Health Information Technology and the substantial HITECH investment are a critical part of putting the U.S. health care industry and the U.S. consumer population on the 21^st century path to improved health and health care. The investment however is almost exclusively focused on enabling the provider infrastructure. We need a mirrored infrastructure that will help patients and caregivers navigate, access and understand the growing health information universe and what it means to them.

The newly announced “Putting the IT in TransITions” initiative is a critical opportunity to help consumers better access and use their own healthcare information, but only if it is put in context and made truly consumer friendly. This means not just plain language but with tools, translation and interpretation resources that make it actionable.

The two-page project summary “Patients and Caregivers the 1^st Step Not the Last Mile” describes an initiative that would explore how to enable a parallel consumer-facing infrastructure that complements and readily connects to the provider-facing infrastructure. Although ultimately there will be one shared infrastructure the timing and challenges of the emerging provider connectivity runs the risk of leaving consumers as the last mile.

We are stepping up to the IT in TransITions two-week challenge with a deadline of October 28, 2011 by seeking broad support for the project and its goals. We have many committed partners and we need your help in emphasizing to HHS and the industry leadership the critical importance of the consumer component to their efforts.

If you can lend your name and/or your organization’s name to this letter of support please email kossoncare@starpower.net by Thursday October 27th.

Your information, exactly as you provide it, will appear after the following statement: We the undersigned agree that successful care transitions need increased consumer IT support and focus consistent with the goals of the Patient and Caregiver Gateway project.

There is excitement in the air about how mobile phones are the breakthrough technology for changing health behavior.  Last Saturday, I was convinced this must be true. In two short hours, I:

• Skimmed the NYTimes op-ed, You Love your iPhone. Literally, that (questionably) claimed that functional MRIs show that our brains react to our iPhones the same way they do to the proximity of someone we love.
• Received an email on my iPhone from NYC Health Business Leaders inviting me to come to a meeting: Is Mobile Health the Next Killer App?
• Came across this podcast on how mobile technology is going to vastly change care for seniors with chronic conditions.
• Read a beautiful review of the behavior change literature that asks the question Is Mobile the Prescription for Sustained Behavior Change?
• Received a text about the highly anticipated release of the iPhone 5.
• And came across the entire kitchen crew of a fancy restaurant staring into/talking on their mobile phones.

Now I’m sure that the seductive power of our mobile phones hasn’t escaped your notice. Certainly, if you are concerned about people engaging more fully in their health and health care, you have seen the thousands of apps that intend to exploit the combination of widely available mobile phones with advances in Web-enabled technology as the new best way to spark and sustain health behavior change.

I love the optimism that has driven the development of these apps to date.  The theoretical reasoning of the behavioral scientists that finds mobile apps to be a potential game-changer – this is why this technology is different and what it offers above all other technologies and approaches — is subtle and compelling. And I love imagining the personalized guidance and support that will be possible to deliver to us once these theories are transformed into more sophisticated apps for our mobile devices.

I also love it because this health and lifestyle behavior change stuff is really hard for us – whether we are individuals or caregivers or clinicians…and it is really important: it’s necessary for many of us to act differently if we are going to become or remain active and healthy.

We love our phones. They distract us when we are lonely or bored and inform us when we are lost or curious.  They allow us freedom of place and space.  And the rewards they offer are immediate, efficient and entertaining.  But we mostly love them because we like what they do for us.

My friend Lou has early Alzheimer’s and her caregivers have set up a locator app on her iPhone to track her when she goes out.  When her resentment about being spied on builds up, she hides her phone in her house and heads for the door, almost always forgetting where she put it or that she hid it at all. Even in her confused state, she’s willing to let go of that treasured phone —which is her main link to the people she loves — when she associates it with negative emotions and experiences.

I am trying to gain weight.  I want to eat and know I should eat every hour and I have a full array of tempting snacks by my side at all times.  And I have carefully set up an app to deliver a different alarm every hour to prompt me to eat. Yet I reliably delay my response to each alarm and then forget to eat the nuts and even the cookies.  You cannot imagine how easy it is to turn that little sucker off and promise myself that I’ll eat as soon as the conference call is over, when I finish this paragraph, or when I get off the subway.

Two small examples but telling ones.

While mobile phones can do so much – and will soon be able to do much more —to monitor our movements, tailor information to our interests, send us strategic messages, and remind us with alarms, our will is still our own.  When the device becomes the driver of change, rather than us, it becomes an electronic substitute for a nagging clinician or spouse, a voice that reins in and confines, bringing out our worst adolescent tendencies: mischief; defiance; disobedience.  I’m not sure that an app exists that can wrangle that impulse into submission in most of us most of the time.

We prefer fun, enjoyable activities and avoid irritating ones.  If an app becomes the source of unwelcome advice or beeps, or we feel intruded upon or our response to some app brings unwanted attention to us, we will have no problem circumventing it.

As much as we depend on the convenience of our mobile devices, they are only tools.  While my mobile phone can link me to information, advice, friends and support, I don’t confuse it with them. I can get to these valuable resources via my phone when I want them.  But I know that when I am sick, the disease is located in my body, not my phone.  Regardless of what is going on with my phone, I’m the one who has the cancer and I’m the one who takes the chemotherapy drugs, pleased as I would be to delegate that responsibility to an inanimate object.  When the alarm goes off that your mom has fallen, it is your hands or the hands of the EMR technician that help her get up, not the mobile device. When Lou gets lost, even when she has her phone with her, it is her caregivers or the police who find her and bring her home.

I am convinced that behavioral scientists and app developers will be successful in getting those mobile phones to do what they want them to: deliver clever tailored behavior change strategies directly to us through our mobile phones.  And I am equally confident that many of us will try those apps. But if they don’t do what we want them to —if they become a burden, an intrusion or a bore —we will ignore them, delete them, or, when all else fails, carefully place our beloved phone in the vegetable drawer of the refrigerator and head out the door.

By Janice Lynch Schuster. Sunday night, simultaneously tired and wired from my participation in a 39-mile fundraising walk for breast cancer, I attended my daughter’s one-year anniversary meeting to celebrate her achievement: She has one year of drug-free living. The ceremony was moving and painful, joyful and sad. She talked about her struggle, her journey and moments of arrival, insights into her addiction and awareness of ways to overcome it. She talked about people in the room who had helped her along the way, who had called her on it when she tried to bamboozle them, who had loved and supported her as she worked to find other ways to cope with a world in which she had trouble living by the rules. Others in the room testified about their experiences with her—her determination to stay sober had inspired theirs; the fact that she had made it for a year gave them hope to reach similar goals; her enthusiasm and dedication, they said, was electrifying. To other teens in the meeting, she was a role model. She was—and is—a beloved part of this community of addicts and alcoholics. The outpouring of love and affection these people have for my daughter made me understand more fully and deeply just what it means to be on a journey with a community of like-minded people, and how important it is to be surrounded by such people when the journey is long and difficult, when there are barriers to be overcome and milestones to reach.

This time last year, we were in a very different place.  Aware that my daughter was self-destructing, I admitted her to a rehab facility; she was furious with me and told me our relationship was over, that I was not her mother, and she would never be my daughter again. She was livid and, until I stopped answering the phone, would call me daily with her fury. I was heartbroken—my beautiful girl, so smart and talented and funny—had been waylaid by a disease that has plagued our family for generations. She was 17, at the end of her junior year in high school, and at a time when I had expected her to be visiting colleges, studying for the SATs, buying her class ring, we were sitting in a locked room, crying and angry and overwhelmed by what was happening. The weekend I checked her in to the rehab facility coincided with the annual 39-mile walk, and despite my sorrow, I felt obligated to walk. So many people had donated so much money to me, and although the funds were committed whether I showed up or not, I felt compelled to go along with my plan.

I could not have made a worse mistake. The stress and anxiety compromised me more than I realized; walking with my teammates, I felt isolated and miserable, unable to connect to the enthusiasm and community the day usually generates. Instead of joyfully moving forward, my brain and body were caught in a terrible circle of trying to figure out what was happening to my daughter and why, where I had failed her and how, whether I could save her or not, and realizing that all of this reasoning was wrong: Addiction is a disease, and I could no more save her from it than I could save my friend from metastatic breast cancer. By Mile 18, my feet were killing me; I slathered them with some lotion, had an allergic reaction, broke out in hives and swelling, and made it to Mile 26 thanks to a friend who slowed down and stayed with me, who filled the hours with stories and jokes, and who insisted that I had to finish. I spent the next two days in bed, crying.

This year was different. I trained all year with a fantastic trainer whose charisma and expertise convinced me in that I could do anything. He pushed me, came up with routines that seemed impossible, and encouraged me to get beyond thinking I couldn’t possibly do more. I also trained with a group of women who met each Saturday and walked for 10 or 15 or 20 miles, and our shared stories and experiences pushed each of us to move forward and grow stronger. Every day of the week, I walked—sometimes just a mile or two, sometimes six or eight. My energies were wholly focused on a singular goal: I was going to make it on this year’s walk; I was going to, as my trainer said, “Finish strong,” I was going to be a source of strength, inspiration, and support for my friends who are living with breast cancer. Just like my daughter: I was going to focus on this one goal and surround myself with people who understood what I was doing and why, and who could help me along that path.

And so I did, and here’s what I realized at the end of the 100,000 steps it takes to walk 40 miles: My daughter and I are both on a journey. In my case, I  chose it; in hers, it chose her. In both cases, neither of us could have made it without the community in which we found support and solace. Throughout the year, I had wondered at her attachment to her home group: It meets in the most crime-ridden area of town and I couldn’t imagine the kinds of people she’d find there. As it turns out, they were all just people, just like my daughter, Meredith, trying hard to overcome an illness that had claimed them, and that would take their lives if it could. One step at a time, Meredith had made her way through a year, through a journey that challenged and mystified her.  And while the breast cancer walk is a hugely public event—we all dress in pink and we carry signs and posters celebrating survivors, we walk in the streets and cheer, we make jokes about boobs and proclaim “Save the Tatas”—the journey to sobriety is met with stigma and isolation.  

How different might it be, I wonder, if I could stand up in the street and cheer that my daughter has survived this year, if the larger world could recognize the pain and suffering she and others like her had endured, and appreciate the accomplishment of sobriety, rather than judge the victim? What would it be like, I wonder, to stage a walk to support alcohol and drug treatment and recovery? What if we stepped out of the dilapidated room in a community center and rejoiced?

What color would we wear?

“My doctor can titrate my chemotherapy to the milligram but can’t tell me when I am going to die,” a friend who was struggling with his treatment for cancer complained to me a couple years ago.

Had he lived, he might have been reassured by the announcement last week of a new scale that allows clinicians to estimate the time remaining to people with advanced cancer.  He was spending his final days “living by the numbers” of his white blood cell count, the amount and size of his tumors and suspicious lesions, the dosage of various drugs and radiation treatments. And he was peeved about what he saw as a critical gap in those numbers.  He believed (hoped?) that because his cancer was quantifiable and the treatment was quantifiable, that the time remaining should be similarly quantifiable.  He needed that information to plan how to use the time that remained.

Many of us would make a different choice about knowing how long we will live when we are similarly ill.  But most of us are attracted to the certainty we attach to the numbers that precisely represent aspects of our diseases.

It is not just when we are seriously ill that numbers dominate our experience with health care.  Advances in technology have made it possible to quantify – and thus monitor – a seemingly infinite number of physiological and psychological health-related states. For instance: weight, blood pressure and cholesterol level, hemoglobin A1c level; the range of shoulder mobility; the size of a hernia; the risks discovered when we undergo genetic testing during pregnancy; the probability of developing diseases based on our smoking, physical activity and bike helmet-wearing; the amount of pain or sadness we feel.

Most of these numbers represent a marker that is potentially modifiable by some action we can take, often with guidance from and in collaboration with our clinicians. But while a change in a number may affect the course of treatment or indicate a higher or lower risk, it doesn’t guarantee a certain effect or outcome, as much as we would like it to.

These few familiar examples represent only a tiny fraction of the health-related numbers that compete for our attention over the airwaves and online. We can purchase a whole raft of numbers about ourselves by getting a full body scan or having our genome read.  Apps on mobile devices and various bands and devices allow us to monitor every heartbeat, every breath, every fluctuation in sleep, attention and anxiety.  And practically every month will bring something new for us to measure.

What do we do with all these numbers?  Are all of them important?  Are some more important than others?  If so, which ones?

We vary widely in the amount and type of information we want about our health. If we are to benefit from the health care available to us, all of us need to be acquainted with the top few numbers that are relevant to our specific situation and history. We should understand the numbers that put us in particular danger of illness or injury, and for which there is an action we can do (or can be done to us) to improve them.  We need guidance from our clinicians to separate the wheat from the chaff over time: today as I decide about getting a mammogram, next year when I get a new diagnosis, and afterward, as I make my way through treatment. Which numbers are imperative that I attend to, which are optional and which are irrelevant?

It may be the allure of health-related numbers comes less from the specific information they convey than from the illusion they support: that the practice of medicine is governed by empirically based algorithms, with effective strategies that can be used to “manage” the numbers, thereby reducing or curing the disease or symptoms.  My friend who was annoyed by his doctor’s inability to tell him how long he had to live shares with all of us the desire for predictability and perceived control of our health and illness.  So just what’s wrong with maintaining this illusion that numbers represent medical certainty?

Because while those numbers may spark the curiosity of some, the certainty imputed to them extinguishes it in many of us. Why should I be an active participant in my medical care and question my clinician’s approach, explore different treatment options, or maintain vigilance about medical errors, for example, if health care is as clean, scientific and exact as these numbers seem to imply?  The reality is different and it can be frightening, especially when we are ill. Despite the growth in knowledge about health and disease, gaping holes remain; clinicians piece together bits of evidence and experience to formulate treatment plans.  Often, there is no single right answer or solution.

Our challenge is to not be seduced by the false certainty of health-related numbers, but rather to see numbers as potentially valuable tools – but just tools, not guarantees — each of which may help shape our actions and those of our clinicians in our shared effort to make the best possible use of the services and technologies available to us so that we can live as well as we can for as long as we can.

My friend who wanted an estimate of the time remaining to him wasn’t looking for a promise that he wouldn’t die.  He was interested in figuring out how to fit in all the life he could into those few days or, as it turned out, meaningful, bittersweet but pain-free weeks.

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.

By Janice Lynch Schuster. When I was a little girl, country singer Glen Campbell had a variety show on television called “The Glen Campbell Good Time Hour.” As I remember it, it was a good time; in my young imagination, I often confused him with my father, who I thought was just as handsome and talented and fun as Glen. I loved his songs and wanted to learn to play guitar so I could be more like him.

Sadly, Mr. Campbell has been diagnosed with Alzheimer’ disease. As most people know, Alzheimer’s is the primary cause of dementia, a gradual loss of brain function that becomes more common as we age. As the disease slowly and insidiously strips us of our thoughts and memories, it strips us of our lives and torments our loved ones in a grim process that can take years to unfold. Mr. Campbell’s decision to put a face on this awful disease by continuing to tour is a mark of real courage and heart. I don’t know how long he’ll last on the road—and early reviews, pre-diagnosis, panned him for being so forgetful and bumbling—but I hope that road takes him into some kind of good night, Rhinestone Cowboy.

Not many celebrities let us come so close. In our wild pop culture pursuit of public figures, we are eager to hear the details of their private lives—we buy up People and Star and Us by the ream. We want to know who’s pregnant, who’s with whom, who’s sleeping where, who’s in rehab, and who’s out. We want to hear about celebrities’ brave battles against one illness or another—bipolar disease or addiction, cancer or diabetes. We are thrilled when a gaunt but apparently cured Michael Douglas emerges from chemotherapy. We are sad when Patrick Swayze falls to pancreatic cancer.  And we cry when Clarence Clemmons succumbs to a stroke. We collectively mourn the deaths each week of various celebrities whose lives, we think, touched our own.

But we don’t really want to know the details of stars’ final months and days. Christopher Hitchens’ extraordinary essays in Vanity Fair notwithstanding, we don’t want to hear public stories of what it’s like to live with—and die of—a chronic, serious illness.  We want stories that are about youth and beauty—or, at the very least, stories that wrap things up in a comfortable ending. It would make us too sad, too lonely, too mortal to hear more about what is likely in store for each of us: Months or years living with a disease that will prove fatal. I worry that we aren’t able to tell these stories, or bear witness to them, or acknowledge the long and difficult journey that is, in fact, in store for most of us.

Absent such public telling of deeply private moments, we have no cultural framework from which to think about what it means to live with a bad disease for a long time. For the most part, the stories we see on television or at the movies are full of sudden and violent death, or conclude after a compact two-hour drama with sweet deathbed scenes in which everyone says goodbye and the eyes close. For most of us, it’s not going to be like that: We will instead live for many years with chronic and debilitating conditions that will render us increasingly dependent on others for our care.

Without stories of the reality of chronic illness to draw upon, we wind up stuck in our death panel absurdities and our assisted-suicide debates. We reach a time when a loved one is suffering from a serious illness and we throw up our hands because we haven’t a clue what to do. We have no images or stories or collective narrative from which to draw. And so we end up enduring one of the most difficult of life’s transitions alone, and making it up as we go along. Too many of us, patients and families, find ourselves isolated and frightened, abandoned by our communities.

When I tell people about my work writing about what happens at the end of life, they inevitably tell me their stories about their mothers and fathers, their grandparents and extended family. They talk about how lucky they were to have good pain control, or how horrifying it was to listen to a loved one struggle to breathe. They describe their uncertainty and their fear. What a difference such shared stories might make for people facing the end of life. Such stories might give us a way to navigate these profoundly private transitions while understanding that we are not alone in the journey. They might give us a platform from which to discuss larger and more important issues of society and culture, of how we will care for one another as millions of us grow old together.

Watching Glen Campbell tour might not be the best story of the year, but it will certainly be among the most poignant. It may be excruciating for his family and friends, but it may also give the rest of us some insight into what we face and some sense of the kinds of policies and social constructs that we need to navigate this new territory. I hope, for Mr. Campbell’s sake, that the Rhinestone Cowboy finds peace and relief from his suffering. In the meantime, I hope the rest of us learn how to talk about the end of life, and talk with purpose and meaning and real understanding. Once we start that conversation, we might find ways to construct programs and policies that support us through the difficult passages we all will face.

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.

“There is a better way – structural reforms that empower patients with greater choices and increase the role of competition in the health-care marketplace.” Rep. Paul Ryan (R-WI)August 3, 2011

The highly charged political debates about reforming American health care have provided tempting opportunities to rename the people who receive health services.  But because the impetus for this change has been prompted by cost and quality concerns of health care payers, researchers and policy experts rather than emanating from us out of our own needs, some odd words have been called into service.  Two phrases commonly used to describe us convey meanings that mischaracterize our experiences and undervalue our needs: “empowered patient” and “health care consumer.”

As one who has done serious time as a patient and who spends serious time listening to talks and reading the literature that use these words to describe us, I ask you to reconsider their use.

“Empowered patient” The fabrication of the verb “to empower” from the noun “power” was used in the civil rights and community development movements to describe a benevolent bestowal of influence on disenfranchised individuals and groups by those who had previously excluded them.  When used in relation to health care, the word perpetuates the idea that we are passive entities, waiting to be gratefully endowed by our clinician or a new policy with the right and ability to act on our own behalf.  Our “empowerment” takes place not as a result of our own will or preference, but rather because we have been given permission to act in a different way by some external agent.

This word is often deployed as an egalitarian euphemism that cleverly disguises cost- and responsibility-shifting from professionals and institutions onto us, for whom fulfilling those responsibilities can be a heavy burden.  For example, because the American health care system lacks a functioning electronic medical record system, we have become “empowered” by HIPAA to carry our own health records and tests results from doctor to doctor when we are ill.  Similarly, we are “empowered” to be cost conscious and shop for less-expensive providers and services when we are laboring under the weight of our $5,000 deductible.  We are “empowered” by the note on the name badge to ask every employee who walks into our hospital rooms whether he or she has washed his or her hands.

Used to describe patients, this word does not connote new power – rather, it signifies new responsibilities.  I may not like these new responsibilities and I may struggle to fulfill them, but I would rather know that I must do so if I am going to benefit from my care than to be lead to believe these new responsibilities are a choice or a gift that I have an option to claim.

How about if you call me an active patient, or an informed or engaged or knowledgeable one?

“Health Care Consumer” In focus group after focus group, we have said we don’t want to be called health care “consumers.”  There is a long tradition of explaining why health care is not a market commodity.  In their 2008 article “The Patient Life: Can Consumers Direct Health Care?,” Carl Schneider and Mark Hall provide a data-filled analysis of how current conditions in American health care simply do not support the standard characteristics of consumerism.  For example, good choices – indeed any choices of health plan or primary care clinician — do not exist for many of us.  Comparative cost and quality information is not available on almost any of our relevant choices.  And many doctors resist discussing issues of quality and cost with us: They often have limited knowledge about the wild variation in health care pricing and little meaningful information about the quality of the care they, their own clinic or their hospital delivers.

Calling us “consumers” perpetuates the notion that by the mere act of giving us some information – however spotty –  we will be transformed into making objective, informed judgments about our care when it is simply impossible to do so right now.  It allows those who use this term to convince themselves that because this is a role we easily fill when purchasing lettuce and flat-screen TVs, finding the right health care should be no different.  And it fuels the underlying belief that we will naturally seek out high-value care and thus influence the health care marketplace … and in doing so exert demand that solves the problems of cost and quality that have long proved resistant to the efforts of powerful actors like the government, private payers and health professional groups.

How about dropping the commercial language and calling us oh, say, “people” or “employees?”  Or if some descriptor is needed, how about taking a clue from the Whole Person effort of the 80’s, which brought us “people with AIDs” instead of AIDS victims.  “People with Medicaid” or “people without insurance” would work.

The words “empowered patient” and “health care consumer” are currently being used as subterfuge to mask an agenda that shifts risk, costs and responsibilities to patients and families.  Their use diminishes our individuality, our autonomy and our dignity.  And the underlying assumption those words share is that performing the often complex, unfamiliar tasks of finding and benefitting from our health care is a matter of having enough will and sturdy bootstraps – and that it is our own fault if we don’t succeed.

Don’t get me wrong here: I am pleased with the growing recognition that we have a vital role to play in improving the effectiveness of our health care.  Some new resources are now available to help us act on our own behalf to find safe, high quality care and make the most of it. And I support the well-intentioned efforts of those working to ensure that care will become more responsive to our needs over time.

The glib use of these words and phrases by those in powerful positions in health care signals underlying attitudes and beliefs about us that are inconsistent with what is known about the difficulty of changing health-related behavior and a true disregard for the complexity and magnitude of the challenges we face in finding good care and making the most of it.  These are not simple tasks, and the help we need to do them is neither simple nor cheap.  Throwing a few bits of information and big hunks of risk in our direction and describing us with shiny new words will not do the trick.

The following is a guest post from blogger and writer Amanda Kidd. She is a regular follower of healthy living her health guide includes all the health related topics. Amongst all she likes to write on sexual health a lot:

Sexual urge or the libido is a natural phenomenon in men and women alike. It is widely believed and understood that couples enjoy intimacy more in their young age rather than in matured stage of their lives. Though apparently this may be a well accepted notion and may also look very true, the research indicates otherwise.

Sexual urge in older women, or middle aged women, is a subject of immense interest and research amongst the scientists and researchers all over the world. What happens to the sexual drive of a woman when she crosses the threshold of 30 and enters into the middle age era? Does she feel bored? Does her desire begin to wane? Or is it that sexual urge in women has no age bar? And at any point in time they remain equally active, if not more than the man?

An article published in a health magazine in UK suggests that middle aged women show more urge for indulging in sex than their younger counterparts. Elaborating further on the sexual drives and sexual health of older women, the article claims that these women are also more willing than younger women to have sexual escapade!

As you age, definitely there are going to be hormonal, psychological and physical changes in your body. You may not find yourself as interested or inclined to have fun in the bed. On the other hand, you may be surprised to see yourself attracted towards your partner even more than ever. The sex drive may blossom the way flowers blossom in the season of spring.

A study conducted by a US University last year throws up some interesting facts about spring bringing with it a glance at older women’s sexual health. You may be surprised to know that contrary to the common conception, from amongst the 2000 women surveyed, 43 percent of women aged 45 to 80 reported moderate sexual desires and 60 percent had been sexually active in the previous three months.

Being sexually inactive is also a problem amongst many women – reasons varying from lack of interest in sex to lack of partner to physical problem of the partner to lack of interest by partner to having some personal physical problems.

You must not hesitate in consulting a doctor or a psychologist or a clinician if you fall under any one of the aforesaid categories. And doctors on their part should consider women’s overall health when addressing the concerns about sexual inactivity amongst elder women. They are supposed not only to focus on the women’s health and general well being, they should also take into consideration partner issues to solve the problem.

As a middle aged woman if you realize that you are confronting physical and emotional changes of aging and unable to maintain a satisfying sex life, you need to talk to your partner about it. Instead of trying to find ways to get back to the level of sexual activities you enjoyed as a youth, try to find ways to optimize your body’s response for sexual experience. Negotiate a way out which is mutually satisfying.

Love matures with age, they say, and so do your drive for sexual satisfaction. Maintaining sexual health is state of mind and you can remain in pink of your sexual health if you believe that you will be seventeen till your last breath.

Wherever there are citizens who are passionate about improving the public health of their communities, the potential exists to build a powerful movement for change. Usually, these individuals are activists in social movements and in voluntary associations including civic organizations, women’s associations and labor organizations. But, their passions can move mountains, as you’ll learn from our list of 10 historic movements that improved worldwide public health.

1. Cancer: On May 22, 1913, the American Society for the Control of Cancer was created at a meeting of ten doctors and five laymen. At that time, a cancer diagnosis amounted to near certain death. Rarely mentioned in public, this taboo disease was steeped in fear and denial. In 1936, Marjorie G. Illig, an ASCC field representative and chair of the General Federation of Women’s Clubs Committee on Public Health, made an extraordinary suggestion. She proposed creating a legion of volunteers whose sole purpose was to wage war on cancer. The Women’s Field Army, as this organization came to be called, was an enormous success. Today, the American Cancer Society continues the fight against cancer, and many groups — including the Susan G. Komen Foundation — join the fight.

2. Health Insurance: The U.S. is the only industrialized nation that does not have national health insurance. As early as 1915, the American Association for Labor Legislation (AALL) proposed a national insurance system that would cover medical care, sick pay, maternity benefits, and funeral expenses for low-paid workers and their dependents. To this day, despite four other battles for national health insurance, about 16 percent of the population is uninsured. However, the Affordable Care Act recently brought an end to some of the worst abuses of the insurance industry, bringing new rights and benefits to Americans.

3. Hull House: Jane Addams, in 1889, worked with Chicago’s neediest families and helped them to become full participants in their communities. Today, the Jane Addams Hull House Association continues to provide services for child welfare and foster care, domestic violence victims, education and literacy, homelessness, eldercare and youth. They even provide workforce development and small business development.

4. Infantile Paralysis: This disease, also called poliomyelitis or polio, was a worldwide epidemic between 1840 and the 1950s. In 1938, President Franklin Delano Roosevelt founded the National Foundation for Infantile Paralysis, and by 1942 a campaign to bring the fight against this disease was launched. March of Dimes replaced the name for this foundation in 1976, and the name became the March of Dimes Foundation in 2007. When the original goal of eradicating polio was accomplished in the 1950s with vaccination, the foundation successfully made a transition to prevention of birth defects and infant mortality.

5. Visiting Nurse Services: In 1893, Lillian Wald created the Visiting Nurse Service of New York and, within months, she and a colleague had established a presence on the Lower East Side. By providing care for their neighbors’ illnesses, and assisting with births and with deaths, Wald and her colleagues became the first public health nurses in the country. Today, VNSNY offers community and corporate services, including health plans.

6. The Love Canal Homeowners Association: Lois Gibbs founded this organization in 1978 when she and others were concerned about the high rate of cancer and birth defects in the community, which came from industrial waste. Gibbs now is the executive director of the Center for Health, Environment and Justice, which she founded in 1981 following the Love Canal struggle. CHEJ is a national organization that assists local people to become empowered to protect their communities from environmental threats.

7. The Newtown Florist Club: This organization, located on the south side of Gainesville, Georgia was founded by women who pooled their money to buy wreaths for funerals in their community; in the 1980s they began to recognize that there were far too many deaths due to cancer and lupus in the neighborhood. Now their advocacy includes youth development and organizes for social, economic and environmental justice throughout Hall County, Georgia. The original founder, Faye Bush, also suffers from lupus, but she continues to go battle with the corporations whose factories pollute the air that she and other Newtown residents are forced to breathe.

8. WE ACT: This group’s name is West Harlem Environmental Action, and they currently act on health disparities and issues of environmental justice for low income and minority urban residents. One of the first environmental organizations in New York State to be run by people of color, WE ACT was founded by Vernice Miller-Travis, Peggy Shepard and Chuck Sutton, and incorporated in 1998 as the result of local community struggles around environmental threats and resulting health disparities created by institutionalized racism and the lack of social and political capital.

9. National Welfare Rights Organization: This movement, which was strengthened by a patients’ rights movement in the 1970s, grew rapidly and died just as quickly in 1975. Syracuse University professor George Wiley, a Congress of Racial Equality member who left academia in 1964, formed the Poverty/Rights Action Center in 1965 and it evolved into the NWRO two years later. One lasting impact included their preamble to the NWRO document, which became the basis for the Patient Bill of Rights adopted by the American Hospital Association in 1972.

10. Sanitation and Waste Management: The Bubonic Plague, cholera and typhoid fever, to mention a few, were disease that altered the populations of Europe and influenced monarchies. These diseases continue to be perpetuated by filth that harbors rats and bacteria and that contaminates water supplies. With the advent of industrial revolution, waste management became a critical issue thanks to an increase in population and the massive migration of people to industrial towns and cities from rural areas during the 18th century. However, many land owners, the rich and educated people opposed sanitation on the front end because of the cost. In 1900 owners were still fighting against the obligations to put their buildings on the public sewer system and to cooperate in the collection of garbage. Even today, advocacy groups fight to help control public waste and corporate mismanagement of waste and chemicals.

By Margaret Anderson. What’s missing today in the medical research system is a sense of urgency and a willingness to take risks. When it comes to developing new therapies for deadly and debilitating diseases, it takes too long, costs too much, and patients are left wondering – where are the cures? Last year only 21 new molecular entities were approved by the Food and Drug Administration’s (FDA) Center for Drug Evaluation and Research, the fewest approved since 2007.  Can we honestly say that this is the kind of return we should be getting on our multi-billion dollar investment in scientific discovery?

Pharma and biotech companies, along with the federal government, provide the majority of funding for biomedical research in the U.S., however there is another group of nonprofit disease research foundations known as “venture philanthropies” that are bringing a sense of urgency to the medical research community and having an outsized effect on R&D.

Although they comprise only a small share of overall R&D spending in the United States (roughly three percent) these nimble, outcomes-focused organizations are making the high-risk investments that are moving promising science forward and, in doing so, increasing the likelihood that other parties will also invest.  In particular, venture philanthropy resources are helping to bridge valley of death – the gap between a promising discovery in the lab and the point at which a company is willing to pick it up and move its development forward.  This has traditionally been where many good ideas in the drug development pipeline drop off due to funding and knowledge gaps, and the influx of venture philanthropy support has been invaluable in ensuring forward progress.

Thanks to its focus on measurable results, the venture philanthropy model has begun to take root across a variety of diseases and sectors. 

• For example, the Cystic Fibrosis Foundation—recognized as one of the earliest and most successful examples of venture philanthropy in medical research—has provided more than a billion dollars in research support since 2005 through both its traditional grant making and venture philanthropy investments.  It also actively supports more than 30 new treatments in development and has multiple industry partners including Vertex, PTC Therapeutics, Genentech, and Novartis.
• Another example is The Learning Collaborative recently established by The Leukemia & Lymphoma Society in partnership with the University of Kansas Medical Center and the National Institutes of Health. It is helping to move therapies for rare blood cancers into clinical proof-of-concept studies so that promising treatments can eventually be commercialized.

The Research Acceleration and Innovation Network (TRAIN) at FasterCures brings together over 40 of these types of exceptional venture philanthropies which fund medical research across a spectrum of diseases – from Alzheimer’s and Cystic Fibrosis to rare blood and brain cancers – in order to share and promote models of innovation and collaboration. In many cases TRAIN’s member foundations have been created by patients and their families who are frustrated by the slow pace of change in the traditional medical research system. They represent the kind of organizations that are fast becoming the engine behind medical innovation, with singular focus on, and a significant stake in, getting promising therapies from the laboratory bench to the patient’s bedside as rapidly as possible.

Venture philanthropies like the TRAIN organizations are diversifying our national research portfolio by:

• More strategically using capital
• Building effective cross-sector (and, often, pre-competitive) collaborations
• Streamlining the grant making process
• Creating novel approaches to intellectual property and data sharing

Thanks to their work, multiple millions of dollars in passion capital have funded promising, high-risk science that has lead to several new drug candidates which might otherwise never have been discovered.  Check out http://www.fastercures.org/train/  for case studies about the impact of venture philanthropy on advances in Parkinson’s Disease, Multiple Sclerosis, and other deadly and debilitating diseases.  Also available through the site are new and archived webinars from TRAIN members discussing the innovative projects their organizations are engaged in ranging from novel funding strategies to boundary-pushing data sharing models.

Because of their close relationship with patient communities, their ability to move quickly to address emerging translational and clinical opportunities and their capacity to leverage public investment, venture philanthropies are able to jump-start innovation in a way that other sectors cannot. They are forming a unified advocacy front on key public policy issues affecting the pace of research, and proving that medical progress is not only possible, but fully attainable.

For additional information on this topic, check out the recent TIME magazine article “Check Your Charity!” on the lack of market discipline in the medical philanthropy space and the push to better measure and compete on scientific outcomes. Or read The Chronicle of Philanthropy piecewhich highlighted TRAIN members such as The Chordoma Foundation for their innovative approaches to accelerating medical progress.

FasterCures, the Milken Institute’s Center for Accelerating Medical Solutions, is nonpartisan and not affiliated with interest groups. For more information, visit www.fastercures.org. Join us at Partnering for Cures, medical research’s most forward-thinking, outcomes-oriented, and patient-focused event, November 6-8, 2011 in New York City.

The following is a guest post by Kathy N. Johnson, PhD, CMC. Dr Johnson is a Certified Geriatric Care Manager, Founder and Chief Executive Officer of

By Dr. Kathy Johnson. Family members who provide care for a chronically ill, disabled, or aging parent make up almost 30% of the U.S. population. The majority are women, ages 40-65, and they spend an average of 20 hours per week in hands-on care giving. Family caregivers are often adult daughters who are also caring for children and juggling job responsibilities, household chores, and the needs of a spouse.

If you are in this “sandwich generation,” the pressure to do it all makes you particularly vulnerable to stress. Research has shown that nearly 75% of caregivers report not going to the doctor as often as they should; 63% have poor eating habits; and 58% indicate that their exercise habits are disrupted by care-giving responsibilities. 

Being a family caregiver is never easy. However, many women feel so overworked and unappreciated that they are unsure about their ability to continue being a caregiver. The daily emotional and physical demands of the care-giving process often lead to feelings of burnout.

The Signs of Burnout

Psychologists define burnout as “a debilitating psychological condition brought about by unrelieved stress.” Burnout isn’t as obvious as getting a sore throat or the flu, and family caregivers often deny or are oblivious to the signs of burnout. Sometimes burnout is noticed first by other family members and friends around you. Pay attention to these warning signs:

• Feeling pessimistic and dissatisfied
• Decreased energy or emotional exhaustion
• Withdrawing from friends or social interactions
• Loss of interest in work or enjoyable activities
• Increased use of alcohol or medication to relax
• Becoming impatient, irritable, or argumentative
• Lowered resistance to illness

Preventing Burnout

The most important step that you can take to combat burnout is to closely monitor your stress level. A high stress level lowers resistance to disease and leads to fatigue, depression and eventually, burnout. The following strategies can help: 

• Find a caregiver support group. Most communities have services or groups where you can confide in others who are also caregivers and receive emotional support. Call your local senior center, area Agency on Aging, hospital senior services, physician or church. If you can’t leave the house, search the Internet for support groups.
• Set reasonable limits. You can’t be a successful caregiver if you give until there is nothing left. Be realistic about how much time and energy you can devote to care giving and know when to stop. Prioritize tasks and only do those that really have to be done. Whatever condition or problems your loved one has, realize that you can’t cure it or control it any more than you can meet every need.
• Take care of your health. You owe it to yourself to make time for your own heath. Take a walk or do some form of regular exercise at least 20 minutes, two or three times a week. Be sure to eat a variety of foods, including the 7 super foods—blueberries, dark chocolate, fish, nuts, eggs, vegetables and flax seed. Also make sure to get at least six to eight hours of sleep per night.
• Incorporate joy into your life. Do things you enjoy on a daily basis. Listen to music, garden, cook, go see a movie, or just walk the dog. Think about activities you’ve done in the past that you found enjoyable, and find pleasure in little things in life.
• Start a journal. Writing is a great way to express emotion and regain perspective. Caregivers often feel conflicting emotions. Write down what you feel and accept the good and the bad. You might even start your own care-giving blog.
• Schedule pampering time. Reward yourself by taking breaks from your care-giving routine. Call your local spa for a massage or manicure. Soak in a warm bath. Go to the mall and buy something new. Find an activity that will rejuvenate your energy.
• Reach out for help. There are a many resources for help with care-giving responsibilities. Call a friend, family member, or even a volunteer from a senior center or church and suggest specific things that they can do to help you. You can also hire a caregiver from a reputable home care agency, like Home Care Assistance, to provide respite care so that you can recharge.

Being an effective caregiver means learning how to take care of yourself so that you can provide healthy support and love to others. These strategies will help you be a better caregiver and avoid the debilitating effects of burnout.

In an article filled with speculation, misinformation and broad sweeping generalizations, the Wall Street Journal does its damned best to make the birth control pill seem to be the worst thing to have happened to modern civilization, implying that by interfering with ovulation, the pill impairs our natural ability to choose a mate, causes women to choose less masculine partners and then stray from them, and makes us pick genetically similar rather than dissimilar mates.

Women on the pill no longer experience a greater desire for traditionally masculine men during ovulation…Researchers speculate that women with less-masculine partners may become less interested in their partner when they come off birth control, contributing to relationship dissatisfaction…That could prompt some women to stray, research suggests. Psychologist Steven Gangestad and his team at the University of New Mexico showed in a 2010 study that women with less-masculine partners reported an increased attraction for other men during their fertile phase.

“Less masculine” men. What the heck does that mean? Less hairy? Less into sports? Less violent? Not into Nascar or big trucks?

How about more likely to engage in conversation? More likely to care about their partner’s satisfaction in bed than their own? More likely to accept a woman having a career?

One could use the data to argue that the pill may be the best thing that ever happened to relationships as far as the female partner is concerned.

And where is the data from real life human relationships supporting these laboratory results? Are women on the pill actually making bad partner choices or straying more? Are men actually choosing non-pill users as their partners over pill users ?

Sorry, no data.  Just speculation and innuendo.

Oh, yeah, and the big new study. A study on lemurs.

The findings, published in the journal Proceedings of the Royal Society, Biological Sciences this year, showed that the injection of Depo-Provera, a long-lasting contraceptive that is approved for use in humans, dramatically altered the chemicals that female lemurs give off to indicate their identity and how genetically healthy they are.

Lemurs, in case you didn’t know, are the only primates who have female dominant societies, so I guess we should just extrapolate this data to humans, who as far as I can see have a male dominant society.  A  common social construct among lemurs is for the women to live with the kids and the males to migrate without them, so much for the nuclear family, huh? Oh, and one more thing - Lemurs have very poor vision, so without their sense of smell telling them a female is receptive, the males would miss their one shot a year to procreate, since female lemurs are only sexually receptive one day a year, another common trait with humans…

So, yeah, we should just extrapolate that lemur data to human societies and relationships. And while we’re at it, lets use it to frighten women and men away from the hormonal birth control.

Nice reporting job, WSJ. Can I send you the women who stop their hormonal birth control and have an unplanned pregnancy after reading your article so you can explain it further to them?

By Jenni Sunde. The benefits of a sound mind and body can be traced all the way back to ancient Greco-Roman cultures.  Despite how long the concepts behind mind and body connection have been around, they are frequently overlooked in our modern society.  The connection between mind and body is particularly impactful for adolescents; studies have shown that happier youths are indeed, healthier youths.

Emily Shaffer Hudkins and her team of researchers at the University of South Florida conducted a study that focused on the impact that positive emotions, moods and overall satisfaction with life has on the health of teens.  Her research shows that these positive feelings, also known as subjective well-being are more significant than depression and anxiety when it comes to physical health.  Psychopathology has long been where the emphasis is placed when it comes to determining how the mind and body are connected. 

Hudkins conducted an experiment with 401 students, grades 6-8 from a suburban southeastern middle school in the US.  She monitored both their subjective well-being and psychopathological tendencies.  The study asked questions about the teens’ satisfaction with life; whether they were strong, proud and excited, and whether they felt lonely, guilty, or sad.  What Hudkins founds is that good mental health most often is linked to good physical health.  Mental health indicators explain roughly 30 percent of the difference in physical health ratings.  The findings show that subjective well-being has a significant, unique and primary affect on predicting important physical health outcomes in youth.  In other words, subjective well-being is more strongly associated with physical functioning than psychopathology.

What Emily proposes is that we change our wellness models to ones that are more holistic, so as to incorporate the entire spectrum.  With current standards, the subjective well-being is often overlooked in terms of its impact on physical health when it actually is more prominent than poor mental health in terms of how much it can affect the body.

Shelia Rittenberg

Overhauling health care… deepest budget cuts in history… A moral battle framed around health care reform…

These are only a smattering of the emotionally charged messages inundating ordinary citizens in America. How do people stay engaged and believe in the work of the country? How do they avoid being jaded about health care reform when politicians toss around accusations and critiques about policies and the people who propose them the way we might toss a ball around with our kids?

I have always believed in the power of bringing people together and connecting them in a meaningful way to those who are creating policies for the rest of us. It’s no different when it comes to health care policy. Here at the National Psoriasis Foundation, we practice “The Three A’s” – Action, Authority and Accountability. Keeping our constituents engaged in relevant issues and problem-solving achieves a spirit of action and purpose for everyone concerned. Leveraging that advocacy helps unify “grassroots” and establish credibility and authority as the voice of the community. Communicating these successes demonstrates that our organization is accountable for the public policy changes essential to our people.

The results of bringing “ordinary people” to talk to policymakers can be profound. There is a transformative power of this work we call advocacy. In our world of psoriasis, there are countless triumphs: the woman meeting with her legislator for the first time who told me she would never look at her psoriasis the same way again; the retiree who has re-invented himself at age 70 as a firebrand psoriasis political activist; the 16-year-old who changed career plans after testifying in Washington, D.C., on behalf of the pediatric psoriasis population. The point is, taking charge through Action, Authority and Accountability can change a person’s life — and society, at the same time.

For people managing a disease, speaking up for their patient community – whether at the nation’s capital or in their lawmakers’ home offices – creates a shift in how people even think about their disease. A person taking political or social action moves from someone held captive by a disease to someone taking the reins with a mission to change limitations for that patient community. Not only do these advocates grow as confident, empowered people but they also successfully effect change on a macro level, benefiting countless others with the same disease.

Transformative qualities of advocacy in organizations

The same process of empowerment holds true for organizations. Taking on the key issues challenging their constituencies, organizations embracing advocacy are noted for their vibrancy and relevance. Engaging people in action builds allegiance to a cause, aligns the organization with issues that matter and empowers people on a personal level.

The National Psoriasis Foundation engages thousands of people around the country who struggle with the challenges of psoriasis – a chronic and alienating disease that affects 7.5 million people in the U.S. Psoriasis is typically misjudged and minimized as a mere rash, when in fact, it brings physical pain, limits normal functioning, and causes embarrassment and isolation because of stigma associated with it. Up to 30 percent of people with psoriasis develop psoriatic arthritis, a disabling form of arthritis. There is an increased risk for those with psoriasis to also develop other serious diseases such as diabetes, heart disease and stroke. 

About 60,000 people with psoriasis engage with the Psoriasis Foundation every year to raise their voice in support of better health policies. Hundreds of those are actually advocacy leaders, participating in delegations to Capitol Hill, going to town hall meetings of their lawmakers and visiting their legislators at home on congressional recess. Thousands of this “action network” also participate in the Walk to Cure Psoriasis, act as mentors to others and raise funds in a variety of ways for psoriasis research. 

How do we do it? We follow three key principles for successful advocacy:

Principle #1:  Effective volunteers and grassroots action will make or break the advocacy program.

The real battleground for winning political causes and effecting change in public policy is often at home where constituents are – not in Washington, D.C.

Principle # 2: Good relationships with members of Congress are critical.

Working with elected officials and other policymakers is no different than interacting with customers, business partners, your child’s teacher or your co-workers: It’s about cultivating relationships based on credibility and trust.

Principle #3: Expand Web-based resources to support grassroots advocacy.

A Web strategy and strong online presence are the most important investments you can make in building grassroots advocacy.

Implementing these principles brings people and their organizations closer to the three A’s– Action, Authority and Accountability. Taking action – contacting members of Congress, making visits, writing letters – is sustenance. In a way, it’s the fuel that drives the engine because people are taking charge of their community’s problems. The empowerment they feel as a result is, simply put, healthy.  The same holds true for the organizations that represent these people – by taking on the key issues challenging their constituencies, organizations become vibrant and relevant.