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…

By Robin Strongin. We, as a nation, have made progress and I believe Dr. King would be proud.  But our work is far from complete–particularly where health care is concerned.  Another doctor, Dr. John M. Eisenberg, a physician of tremendous stature whose life was also tragically cut short (not by an assassin’s bullet but by brain cancer) was equally passionate about the dignity of life and justice for all Americans.   Dr. Eisenberg, who among other things, served as the Director of the Agency for Health Care Policy and Research (as AHRQ was known back in the day), cared deeply about access to and the integrity of health care for all Americans– regardless of skin color.

Twelve years ago, on January 14, 2000, Dr. Eisenberg gave what is, in my opinion, a brilliant speech to the employees of the Department of Health and Human Services.  As with the past two years I want to share his words with all of you today — as a reminder of how far we’ve come, and how far we still have to go.

BIRTHDAY OBSERVANCE OF DR. MARTIN LUTHER KING, JR.: REMEMBER! CELEBRATE! ACT! A DAY ON, NOT A DAY OFF!

When I was invited to welcome you to the Department of Health and Human Service’s 26th observance of Martin Luther King Jr.’s birthday, my first thought was about how honored I was to be asked.  My second thought was about what Martin Luther King’s birth could mean to a rebirth of health care in this country.  Few have had as much impact upon American consciousness.

But what did Martin Luther King think about health care?

My colleagues and I searched through his writings and his speeches, and realized that he didn’t give speeches about health care.  Martin Luther King Jr. was confronting the basic nature of American society.  He had mountains to move–and mountaintops to climb–for this country so that today we can address the issues of high quality health care for all Americans.

If Dr. King were alive today he’d be 71 years old.  He’d be eligible for Medicare.  Like many 71-year olds, he might be dealing with a chronic medical condition–maybe arthritis, or hypertension, or diabetes.  What would he think of the health care system we have today?  What would he think of the medical care he might receive?  And what advice would he be giving the Department of Health and Human Services?

No, Dr. King didn’t give many speeches about health care.  But like the rest of society, health care had to change too.

When I was a teenager in Memphis, before the Medicare program was passed, the Baptist Hospital was the biggest in town, and the proudest of the care it gave.  But if you were African American in Memphis and you went to the Baptist Hospital, you’d go in through a back entrance.  And you’d go to a segregated ward, where you would be in a big room with about 15 or 20 other people.  And your doctor, if he was black, wold not have privileges on staff.  And the same would have been true for Dr. King in Montgomery or in Atlanta.

Dr. Vanessa Gamble, who is the new director of minority afairs at the Association of American Medical Colleges here in Washington, has documented the incredibly important role that Medicare and Medicaid played in helping to desegregate hospitals.  Medicare was a lever that lifted equity and equality in hospitals.  In 1965, our Department issued regulations madating that hospitals had to be in compliance with the Civil Rights Act–which had been passed just the year before–in order to be eligible for Federal assistance or to participate in any federally assisted program.  The passage of Medicare and Medicaid legislation that year made every hospital a potential recipient of federal funds, and therefore obligated every hospital to comply with civil rights legislation if they wanted to get paid.

The law changed, but practice was slower.

When I was a medical student in St. Louis, at Barnes Hospital around 1970, researchers asked why the hospital still seemed to be segregated.  Why?  Because clerks in the admissions office–both black and white–were so accustomed to the old ways that they continued to admit the races to their old units.  The law had changed, but racial stereotypes had remained.  Racist practices were illegal, but racism was institutionalized, and the seeds of racism grew into practices that amounted to discrimination.

I ask you, is it any different today, 31 years after Dr. King was shot in my hometown, and we grieved over the loss of a great American?  Is it different 31 years after I was ashamed of the symbol that my hometown had become, when all that Dr. King wanted was to put into practice the placards that the Memphis sanitation workers wore, that read, “I am a man”?

Today, research shows that African Americans are one-third less likely to have coronary bypass surgery than whites with the same conditions.  Why? And today, African Americans with HIV are less likely to receive antiviral treatment.  Why do these disparities occur?

The easy answer is that it is because African Americans are more often uninsured.  And that is true.  But even with the same insurance, African Americans don’t have the same access to primary care doctors, specialists and hospitals.  And most distressing, even with the same insurance and being cared for at the same hospitals, African Americans get different care.  In one study I did, if you were a black woman you were much less likely to get referred for cardiac catheterization.

The reason–I fear–is that, despite Dr. King’s advances, and despite civil rights laws, and despite Medicare, racism is a part of the institution of American life, and the seeds of racism still grow into discriminatory practices.

So, now 31 years after Dr. King’s death and 35 years after Medicare broke down segregated wards in the nation’s hospitals, the question for us is:  What can we do today in our Department to eliminate these disparities, whether they grow out of the lack of insurance, lack of access, or lack of quality care for those who get access?

No matter where we work in this Department–

• At the Health Care Financing Administration
• At the Health Resources and Services Administration, where programs are supported to help access
• At the Food and Drug Administration, where safe drugs are assured
• At the National Institutes of Health, where research can identify the causes of disease
• At the Agency for Healthcare Research and Quality, where we find out why the quality of care isn’t what it can be, and where our name itself speaks of an arc, of closing gaps.

In every operating and staff division, We can use the levers that we are so lucky to have, and so privileged to use, to eliminate the barriers to high quality health care.

Because we shall overcome.

We shall overcome the disparities in health care, whether they are due to economic barriers, or institutionalized racism, or even unconscious discrimination.  We–as public servants–can build on Dr. King’s contribution to the moral health of our country to make our own contributions to the physical and mental health of all of its people.

Let’s make that commitment today.

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?

By Randi Kahn.

I have been unable to get these strong, Disruptive Women out of my mind, and could not help thinking about both Evelyn and Cynthia while listening to the National Journal’s “Living Well at the End of Life” event on Tuesday, wondering what their conversations about end of life care were like with their clinicians, and if there was a difference between them as a result of their insurance and financial statuses. Did Cynthia choose to live her final days in the hospital?  Did her medical situation necessitate it? Was she given proper information about her hospice and palliative options?

Although we’ll never know the answers to those questions, it is interesting to take a look at barriers that exist for clinicians in end of life care that are likely impacting potential disparities.

First, there are Medicare and Medicaid reimbursement issues. Although both programs currently provide some coverage for hospice and palliative care, there is not reimbursement for the tough conversations doctors should have with their patients about their care options at the end of life. Former Obama advisor on health reform and now chair of the National Institute for Health’s Department on Bioethics, Ezekiel Emanuel, MD, PhD, said at the National Journal event, that those consultations can take anywhere from a few minutes to several hours and that without reimbursement for them, some clinicians don’t take the time to conduct them. His statements align with a survey of 500 board certified physicians conducted by the National Journal and the Regence Foundation where 82 percent of respondents identified inadequate reimbursement from Medicare, Medicaid and private insurers for end of life consultations as a significant barrier for palliative care.

There is also the issue that some clinicians put off the conversations because they do not know enough about end of life care options, or about how to talk to a patient about the decisions that need to be made as they near death’s door. The poll data found 73 percent of physicians 39 or younger reported “a great deal or some exposure to palliative care during medical school” compared to 36 percent of those 40-49, 23 percent of those 50-59, and only 6 percent of those age 60 or older, highlighting the need for continuing medical education courses on palliative care, hospice care, and the development of an advanced care directive. The poll didn’t inquire about communications training that, according to Dr. Emanuel, would help clinicians overcome their own psychological barriers to having these discussions and enable them to better address the patient’s psychological needs to make the conversations more effective.

With entitlement reform almost inevitable, and much of continued medical education focused more on health care reform related topics like coordinating care and utilizing health IT, what will the end of life look like for women like Cynthia and Evelyn in the future?

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.

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.

The greatest regional variances by service type are for MRI scans of the brain, varying 747% between a low price of $425 in the Southwest to a high of $3,600 in the Southeast, based on an analysis from change: healthcare‘s Q2 2011 Healthcare Transparency Index.

USA Today reported on this study on June 30, 2011. Christopher Parks, founder of change:healthcare, pointed out that it’s not uncommon to find inter-regional differences of health prices. However, this is happening ”within a 20-mile radius in your own town,” Parks points out based on his firm’s research.

change:healthcare launched the Healthcare Transparency Index (HCTI) in Q4 2010 to analyze health claims data for various health care services and provide health care buyers with data about cost trends. The tool helps people identify savings opportunities for various health care products and services such as prescription drugs, dentistry, physician office visits, physical therapy, and imaging.

The methodology of the Index looked at 12 months of de-personalized demographics and claims information generated by 82,000 employees representing 152,000 lives from over 200 companies that change: healthcare serves.

Heath Populi’s Hot Points: The argument of whether people who get health care in the U.S. are “consumers” or not rages on, from Paul Krugman in the New York Times to a column in Fast Company published this week which talks about the demise of Google health.

change:healthcare’s data demonstrates that there are cost savings to be accrued to health citizens who shop around for digital imaging services. Whether we call these people ‘consumers’ or not, we as patients or caregivers are taking on more financial responsibility for our health care in the forms of premium sharing, co-payments and coinsurance; have more influence on clinical decision making with our physicians when it comes to prescription drug alternatives, therapies and procedures; and must care for aging parents and growing children. Having access to transparent, high-quality, current information on health care costs, quality, and availability — such as that offered by the Healthcare Transparency Index — will inform and aid us in better managing our own health and health care. A just-launched example of this is Robert Wood Johnson’s National Directory for Comparing Health Care Providers, which provides users with details of physician and hospital quality, costs and patient experience survey data.

Originially posted on Health Populi on June 30th.

By Robin Strongin. We, as a nation, have made progress and I believe Dr. King would be proud.  But our work is far from complete–particularly where health care is concerned.  Another doctor, Dr. John M. Eisenberg, a physician of tremendous stature whose life was also tragically cut short (not by an assassin’s bullet but by brain cancer) was equally passionate about the dignity of life and justice for all Americans.   Dr. Eisenberg, who among other things, served as the Director of the Agency for Health Care Policy and Research (as AHRQ was known back in the day), cared deeply about access to and the integrity of health care for all Americans– regardless of skin color.

Eleven years ago, on January 14, 2000, Dr. Eisenberg gave what is, in my opinion, a brilliant speech to the employees of the Department of Health and Human Services.  As with the past two years I want to share his words with all of you today — as a reminder of how far we’ve come, and how far we still have to go.

BIRTHDAY OBSERVANCE OF DR. MARTIN LUTHER KING, JR.: REMEMBER! CELEBRATE! ACT! A DAY ON, NOT A DAY OFF!

When I was invited to welcome you to the Department of Health and Human Service’s 26th observance of Martin Luther King Jr.’s birthday, my first thought was about how honored I was to be asked.  My second thought was about what Martin Luther King’s birth could mean to a rebirth of health care in this country.  Few have had as much impact upon American consciousness.

But what did Martin Luther King think about health care?

My colleagues and I searched through his writings and his speeches, and realized that he didn’t give speeches about health care.  Martin Luther King Jr. was confronting the basic nature of American society.  He had mountains to move–and mountaintops to climb–for this country so that today we can address the issues of high quality health care for all Americans.

If Dr. King were alive today he’d be 71 years old.  He’d be eligible for Medicare.  Like many 71-year olds, he might be dealing with a chronic medical condition–maybe arthritis, or hypertension, or diabetes.  What would he think of the health care system we have today?  What would he think of the medical care he might receive?  And what advice would he be giving the Department of Health and Human Services?

No, Dr. King didn’t give many speeches about health care.  But like the rest of society, health care had to change too.

When I was a teenager in Memphis, before the Medicare program was passed, the Baptist Hospital was the biggest in town, and the proudest of the care it gave.  But if you were African American in Memphis and you went to the Baptist Hospital, you’d go in through a back entrance.  And you’d go to a segregated ward, where you would be in a big room with about 15 or 20 other people.  And your doctor, if he was black, wold not have privileges on staff.  And the same would have been true for Dr. King in Montgomery or in Atlanta.

Dr. Vanessa Gamble, who is the new director of minority afairs at the Association of American Medical Colleges here in Washington, has documented the incredibly important role that Medicare and Medicaid played in helping to desegregate hospitals.  Medicare was a lever that lifted equity and equality in hospitals.  In 1965, our Department issued regulations madating that hospitals had to be in compliance with the Civil Rights Act–which had been passed just the year before–in order to be eligible for Federal assistance or to participate in any federally assisted program.  The passage of Medicare and Medicaid legislation that year made every hospital a potential recipient of federal funds, and therefore obligated every hospital to comply with civil rights legislation if they wanted to get paid.

The law changed, but practice was slower.

When I was a medical student in St. Louis, at Barnes Hospital around 1970, researchers asked why the hospital still seemed to be segregated.  Why?  Because clerks in the admissions office–both black and white–were so accustomed to the old ways that they continued to admit the races to their old units.  The law had changed, but racial stereotypes had remained.  Racist practices were illegal, but racism was institutionalized, and the seeds of racism grew into practices that amounted to discrimination.

I ask you, is it any different today, 31 years after Dr. King was shot in my hometown, and we grieved over the loss of a great American?  Is it different 31 years after I was ashamed of the symbol that my hometown had become, when all that Dr. King wanted was to put into practice the placards that the Memphis sanitation workers wore, that read, “I am a man”?

Today, research shows that African Americans are one-third less likely to have coronary bypass surgery than whites with the same conditions.  Why? And today, African Americans with HIV are less likely to receive antiviral treatment.  Why do these disparities occur?

The easy answer is that it is because African Americans are more often uninsured.  And that is true.  But even with the same insurance, African Americans don’t have the same access to primary care doctors, specialists and hospitals.  And most distressing, even with the same insurance and being cared for at the same hospitals, African Americans get different care.  In one study I did, if you were a black woman you were much less likely to get referred for cardiac catheterization.

The reason–I fear–is that, despite Dr. King’s advances, and despite civil rights laws, and despite Medicare, racism is a part of the institution of American life, and the seeds of racism still grow into discriminatory practices.

So, now 31 years after Dr. King’s death and 35 years after Medicare broke down segregated wards in the nation’s hospitals, the question for us is:  What can we do today in our Department to eliminate these disparities, whether they grow out of the lack of insurance, lack of access, or lack of quality care for those who get access?

No matter where we work in this Department–

• At the Health Care Financing Administration
• At the Health Resources and Services Administration, where programs are supported to help access
• At the Food and Drug Administration, where safe drugs are assured
• At the National Institutes of Health, where research can identify the causes of disease
• At the Agency for Healthcare Research and Quality, where we find out why the quality of care isn’t what it can be, and where our name itself speaks of an arc, of closing gaps.

In every operating and staff division, We can use the levers that we are so lucky to have, and so privileged to use, to eliminate the barriers to high quality health care.

Because we shall overcome.

We shall overcome the disparities in health care, whether they are due to economic barriers, or institutionalized racism, or even unconscious discrimination.  We–as public servants–can build on Dr. King’s contribution to the moral health of our country to make our own contributions to the physical and mental health of all of its people.

Let’s make that commitment today.

The FCC voted unanimously to have the federal government pay a greater share of broadband Internet costs for rural health care providers, and the commission also expressed its intent to subsidize the construction of broadband networks.

Why is this important?  Over the past 25 years, according to the Center for Health Transformation, over 500 rural hospitals have shuttered their facilities.  And, while 25 percent of the U.S. population lives in rural areas, only about one in ten doctors base their practices in sparsely populated areas, creating a serious physician shortage.  For many, it’s an economic hardship to drive a few hundred miles to see a specialist.  Broadband access can bridge those distances and help physicians and rural patients share vital information.

The FCC has a $400 million annual spending cap for rural health care telecommunications programs, but it wasn’t spending all of that money.  So, now it will pay 50 percent of monthly broadband charges for eligible health providers, instead of 25 percent.

It’s not a lot of dollars in the grand scheme of federal outlays, but if it can help bring quality health care closer to those living in America’s wide open spaces, it’s one of our nation’s better investments.

Childhood obesity was the subject of today’s Disruptive Women in Health Care’s Monthly Breakfast Series Childhood Obesity: A Big Fat National Challenge. Childhood obesity has received a great deal of media attention with First Lady Michelle Obama making it one of her platforms. As noted by all of this morning’s speakers her “Let’s Move!” campaign is well laid out and has the potential for success if we all take a role in its implementation.

Gwen Tolbart a Professional Speaker, award winning television broadcaster and moderator of this morning’s event opened with a vibrant description of a disruptive woman in her life who helped shape her views, including ones on childhood obesity.

Don Mathis, President & CEO of the Community Action Partnership discussed the issue on the federal level. He made three important points: obese kids do not do well in school, they have numerous health problems throughout their lives and they cause a national security problem by decreasing the number of individuals physically able to serve in the military. Additionally, he discussed the issue children in low-income areas have accessing healthy food, commonly referred to as food insecurity or more recently, food deserts.

Next, we took the discussion to more of a local level hearing from Diana Long and Aimee Smith, both of whom have been or are involved in the Philadelphia YMCA. The key to solving childhood obesity from their perspective, is small concrete steps. The ultimate goal is to build social values that will create the necessary behavioral changes. One way the Philadelphia Y is doing its part is by giving all seventh graders in Philadelphia a free YMCA membership. By doing this they are trying to catch kids at a point in time when they are impressionable and need the support to make healthy decisions.

Last but most certainly not least, Rainey Friedman discussed the importance of meeting kids where they are, which today is online. She also stressed the importance of making physical activities fun (and subliminally educational). As founder and executive director of the DreamDog Foundation, an organization that targets childhood development through preschool education and literacy, she had great experiences to share on how to accomplish this. One example she offered was when she developed and taught kids a song about the negative consequences of drinking soda. When she went back to meet with those same kids they had mastered the song and a vast majority of them had cut out sodas. Her final message and a good one to close with was: we need less talk and more action to address childhood obesity in the US…LET’S MOVE!

We hope you will join us for the next breakfast meeting, “HEALTH 2.0: User-Generated Health Care,” June 8, 2010 from 7:30 a.m.-9 a.m. in the Rayburn House Office Building. If you are interested in attending, please register here: www.disruptivewomen.net/breakfastseries. Men are welcome, encouraged even, to attend. We doubled the number of men, so come on, you know you want to.

Don Mathis put it this way: would you rather be in a room with boring men pontificating or in a room full of Disruptive Women in Health Care.

Our panel this morning discussed the issues surrounding how the WHI results were interpreted and communicated to women and their health care providers. We recognize that hormones are not appropriate for all women, and look forward to hosting a future panel that highlights alternatives.

The speakers have a variety of backgrounds and experiences (and genders), and we aim to promote diversity of voices.

This was not normal breakfast conversation.

Today was a jolting – and disruptive – talk about what happens to women’s bodies when they age. (Who knew that if you’re menopausal and you don’t take your hormones, your vagina can literally dry up and shrink?)

The second in Disruptive Women’s 2010 breakfast series, today’s talk was titled, “News (Hot) Flash: Sex, Drugs & Menopause.” The breakfast at Johnny’s Half Shell, was sponsored by Medco – and we’re happy to say there were two men in the audience this month – double last time.

The breakfast started with a screening of trailer for the upcoming movie Hot Flash Havoc. (Think: Michael Moore tackles menopause.)

“It’s not available in theaters yet – but it will be,” said Disruptive Women’s Robin Strongin, introducing the film.

I’m genuinely sad that the documentary isn’t being released until October-ish. Normally, I don’t want to watch anything at 7:30 in the morning, but the little bit that was shown was so funny I can’t wait to see the whole thing. (Seriously, put it on your Netflix queue now.)

Introducing the speakers, Strongin briefly summed up a woman’s life cycle. “You start out life in this estrogen gel – like a gefilte fish,” she said. “Then you hit puberty, you’re either fertile or you’re not, then you’re pre-menopausal, then menopausal, then post-menopausal. Then you die.”

The talk today focused on the menopausal portion of the life cycle. Phyllis Greenberger, President and CEO of the Society for Women’s Health Research, started off speaking about the Women’s Health Initiative. “There was a lot of misinterpretation, some of the results reported were incorrect,” she said.

She quickly explained what they did, what was wrong, and what’s true today. The Women’s Health Initiative was a giant study of postmenopausal women, testing whether hormone replacement therapy could help prevent cardiovascular disease, cancer, and osteoporosis. The results were different for different age groups – women starting hormone therapy in their 70s had generally bad outcomes (increased risk of heart attack, breast cancer, stroke, etc.), while women starting in their 50s had generally good outcomes. But the results widely reported were the negative ones from older participants – so many women never heard about the rest of the research, or anything we’ve learned since!

The next speaker was Dr. James Simon, a clinical professor of obstetrics and gynecology at the George Washington School of Medicine – and a menopause researcher. (But he will forever be remembered to me as the man who scared the crap out of me about the future health and wellness of my vagina. I may not sleep tonight.)

The Women’s Health Initiative’s results scared a lot of menopausal women into quitting their hormones cold turkey. That, is a very bad idea, he said. Going off hormones makes women unhappy and unpleasant, but more disturbing, he said, “when women go off their hormones their vaginas dry up and get smaller.”

(!)

Which makes sex painful – so women stop having it. And, he says, marriages today have enough problems without eliminating sex (or arguing about it).

“No one wants to have sex when it hurts…. You can’t have good sex with a dried-up vagina. That’s a fact,” he said. “I can give you a two-hour lecture on why the parts don’t work.”

Uhm, great. Go on.

Instead, he told a horrifying story about one of his 55-year-old patients – a prominent writer for the Washington Post, who came to his office for her annual healthy woman exam. He asked her how she was feeling, how were things with her husband, how’s their sex life? Good, good, good, she said. Everything was fine.

Then she put her feet in the stirrups.

“I couldn’t even put the speculum in because it’s too shrunk and dry and small,” he said. “I could barely fit a pencil.”

(I have heard stories about women “drying up” and that if you don’t use it you lose it – but I thought that was just, well, talk. I didn’t think it was true.)

He asked her if she was having sex.

She was silent.

Then she started crying. “She cried and cried,” he said.

Painful dried up vaginas aren’t something a lot of women talk about. “It’s grin and bear it, tough it out, or give it up,” he says.

But, being an honorary Disruptive Woman – he laid it on the table.

And Susan Wysocki, president and CEO of the National Association of Nurse Practitioners in Women’s Health pointed out more menopause-related things a lot of young women don’t know – or talk about. Like, who knew some menopausal women off their hormones are in so much pain they can’t ride an exercise bike, or even comfortably sit down.

“Here we are,” she said, “saving at least one vagina at a time.”

She also discussed the fact that some women worry about taking hormones because they don’t want to get breast cancer. She says that sometimes a woman may have a teeny tiny potential tumor that could go un-noticed for years. But, sometimes the hormones can make it grow big enough to show up on a mammogram. And that way a woman can get treatment faster.

“That can be a good thing,” she said.

For more about menopause, hormone replacement, and the WHI study, you can read:

• Women’s Health Initiative site, National Institutes of Health
• “A Fresh Look at Post-Menopausal Hormone Therapy: Benefits and Risks,” Society for Women’s Health Research, January 2010 (updated April 28, 2010)
• “The Estrogen Dilemma,” New York Times Magazine, April 12, 2010
• Hot Flash Havoc movie site

Don’t miss the next Disruptive Women in Healthcare breakfast, “Childhood Obesity: A Big Fat National Challenge.” May 27 at Johnny’s Half Shell. Reserve your spot now!

Sources: US Global Health and Child Survival Budget, 2009 and UNICEF, State of the World’s Children, 2008

Now is the time to speak up and insure that the right investments will be made.  Please Call to USAID to take action on pneumonia and diarrhea.  You can submit a letter to Dr. Shah both welcoming him and asking for him to speak up for children.  Visit: http://www.change.org/actions/view/call_to_usaid_to_take_action_on_pneumonia_and_diarrhea.

Liz Scherer is a digital copywriter, health reporter, medical writer, marketing and social media consultant, blogger and women’s health advocate. With over 25 years experience in the healthcare arena, Liz has worked in the private and public sectors on behalf of web-based and traditional science publishers, public relations and advertising agencies and non-profits.

There’s an elephant in the room: band-aids.

Poverty and its relationship to the provision of and access to healthcare is a global problem. This month, esteemed Disruptive Women in Healthcare bloggers and guest posters are writing on this critical issue with a unique look at the problems abroad. Yet, this has prompted me to look within, for if we can’t address our own problems, how can we possibly be successful at addressing problems outside our immediate borders?

It’s no secret that the divide in the U.S. comes down to socioeconomic status. And while our representatives in Washington continue to battle it out to devise a healthcare reform bill that, for all intents and purposes, may ultimately serve the power lobbies more than the public, a significant proportion of our population is being pummeled into submission with powerful drugs.

According to an article in the New York Times, children from poor families receive antipsychotic medications four times as often as those from wealthier families. What’s more, it appears that these children are likely to receive a prescription for less serious conditions than would commonly prompt a prescription for a wealthier child. The divide: Medicaid versus private insurance.

The underlying message appears to be that if you need to rely on assistance to access health services, that your problems are likelier to be shoved under the rug and “numbified” rather than addressed in a methodical manner. Although this it not necessarily a revelation, some medical experts appear to be “stunned by the disparity in prescribing patterns.” The winning quote in the NYT’s piece is “if it helps keep them in school, maybe it’s not so bad.”

Maybe it’s not so bad on the surface, but the longer-term prognosis appears quite grim. In this particular situation, statistics suggest that as the Medicaid rolls expand, the scope and expense of antipsychotic prescribing could outgrow the budget.

So I’d like to pose the following question as Disruptive Women in Healthcare explores these issues: if we don’t address the underlying challenges that poverty, broken homes and sub-par education pose at home, and how they breed behavioral and physical health issues, how can we develop adequate solutions for the global population? We have become a nation of Band-aids that only cover the problems, not fix them. Short-sighted? Indeed.

In between classes, I have busied myself with all that the MPH program has to offer outside the classroom, as there is no shortage of activity competing for students’ every “free” moment.  For instance, I am part of a monthly health disparities journal club and am working with a professor on a book about Taiwan’s national health insurance system.  I am also now VP of Communications for Students Promoting HEalthcare REform (SPHERE), an organization spanning the school of public health and school of medicine whose goals are to assure that every person in the United States has the right to affordable, high-quality healthcare and to educate the Hopkins community.  So far the organization has had one event this year in which we heard from a panel that included representatives from Kaiser Family Foundation/The Commonwealth Fund, Johns Hopkins faculty, and local news radio, on the state of play in health reform.  We will be having other health reform educational events throughout the year and one major advocacy event in the spring.  As VP of Communications, I will be promoting events at the school, updating and enhancing our website, and possibly forming partnerships with other similar, local student groups.

I have also been fortunate to hear speakers from CMS Office of the Actuary, AHRQ, MD Department of Health and Mental Hygiene and have given one presentation of my own outside of class.  The Health Systems & Policies concentrators meet twice a month to discuss health policy issues and share experiences.  Since I worked in account management for a payer prior to the MPH program (and am pretty sure I am the only person in the current MPH class who comes from a payer background) I presented on Health Reform from a Payer perspective, which stirred quite a bit of conversation from peers who are primarily coming from provider and consumer advocacy backgrounds

In addition, although I’ve just begun the MPH program, I cannot believe it is already time to plan for post-grad, which is right around the corner (May 2010).  So far, I’ve ordered my Johns Hopkins business cards, started a soft search of organizations and firms involved in health reform, policy, and consulting related to access and affordability of care and quality of care issues.  I am also deciding on fellowships and whether to stay in the DC area for a bit or immediately return back to the Philadelphia area, where healthcare spending is among the highest in the nation.  I am also considering how to best spend the January break.  Options include going to India to do public health work with a group of Hopkins students, trying to get involved with a project locally, or simply taking some time to relax and rejuvenate with loved ones and friends (while the last option may be good for sanity’s sake it could also be a lost opportunity to do meaningful work).  I certainly welcome any thoughts or suggestions!

The reasons for this are complex and varied.  This is a particularly vexing challenge for young, chronically ill patients, for people with mental health diagnoses and for the elderly who may suffer from memory impairment.  Anyone on a complicated drug regimen knows how committed one must be to remain adherent.

For some, cost is an issue while for others side effects can be unpleasant, travelling can compromise the best of intentions as can the need for refrigeration when none is available.  Some patients must take some drugs on an empty stomach and others on a full stomach.  Some patients are simply not ready to accept they have a serious, or lifelong illness. It is complicated.

Because the implications, both clinical as well as financial, are significant, we have invited a number of our Disruptive Women bloggers, as well as some other experts in the field, to join us in a series of policy posts on this critically important issue.

Beginning next week, on October 19th, we will launch our Drug Adherence series which will analyze this challenge from a number of perspectives:  patients, providers, researchers.  In addition, we will also offer innovative solutions.

At the completion of this series, we will compile all the posts into an e-book, just as we did when we tackled the issue of Comparative Effectiveness Research and created our Comparative Effectiveness Research e-book.

If  you or someone you help care for has experiences you would like to share, or you have research, solutions and other thoughts on this topic, I hope you will share them with us.

Ola.   Me llamo Meryl.   We were standing in front of 60+ students ages 7 and 8 in a small village school about 2 hours north of Quito, Ecuador.   We were part of a small group (40+) of Americans who had traveled on “vacation”  to Ecuador on a service/humanitarian trip. Some of us were helping “teach” in the schools; others were helping paint the buildings or construct tables and chairs; and the medical team (of doctors and nurses and physician assistants and social workers and nurse practitioners and translators), was working with local health care workers and seeing people at local clinics and from a bus equipped to function as a clinic on wheels.

So as the U.S. stands poised to spend billions of dollars on health care reform and to assure that all Americans have access to the highest quality and most affordable care  and to equip our physician practices and clinics and hospitals with the best electronic health records money can buy;  and funding the most robust and comprehensive research and comparative effectiveness studies……………….. I keep thinking back to the people who didn’t know what it meant to use a tooth brush; or to have soap to wash their bodies or their clothes;  I keep thinking back to the young, wide eyed children seeking a smile and a simple acknowledgement from their American visitors; hugging us hello each morning and hugging us good bye each afternoon; to the countless women washing their family’s clothes in the seemingly polluted rivers along side the cows and sheep and llamas; to the men and women hunched over their knitting needles and yarn for 10-12 hours/day making hats and sweaters and scarves so that they could take their products to market and hopefully support their families; to the dozens of elderly who were blinded by cataracts and unaware of how relatively “simple” surgery could grant them the gift of eyesight again; to the pungent smells from shoeless and toothless “locales” who had probably not bathed in days or weeks or months; to the stories we shared with each other during our “evening debriefs” and how each of us was humbled by the innocence and pride and self sufficiency of the people we met; and how we were inspired by their sincere and genuine and heartfelt friendship; and how I keep thinking about the interrelationships between health and health care and education and clean water and clean air and basic sanitation and plumbing and running water and personal hygiene and poverty and illiteracy……..and I keep thinking about the possibility of returning to Ecuador next summer…….because it was one of the best summer vacations we ever had.

I’ll dispense with ‘rare’ right away.  If by rare, we mean single gene disorders, then perhaps it is a useful designation.

If by rare, we just mean the equivalent of the US definition of orphan disease, i.e., less than 200,000 people in the US, then we should ask a few questions. In the old model of test and drug development, the ‘block buster, body count’, model, rare was a useful designation.  In a system built for BIG, then rare needed a boost.  In the new age of personalized medicine, all conditions are rare. In fact, they are usually an N of 1 after factoring in the myriad of genes involved, epigenetics, environment and so on.  As we enter new ways of dealing with common conditions, they too will be fragmented into dozens, sometimes hundreds, of rare conditions.  Thus rare and common conditions have similar challenges in that realm.  For these reasons, I recommend we lose the word ‘rare’.  I know it has a rich and abundant history in the Orphan Drug Act, but in addition to the aforementioned issues, I think siloing our thinking around disease into these social constructs of abundance of disease misses opportunities that would blossom were we to consider gene families, pathways and targets instead of incidence and prevalence.

Let’s move then to single gene disorders.  Comparative effectiveness would have to go on unemployment if it depended on single gene disorders for its first tasks.  Most single gene disorders do not have a treatment, let alone several.  And once one is developed, it is hard for a second one to be developed given the lack of financial incentives in the old paradigm.  Perhaps a first step in comparative effectiveness for single gene disorders is creation of ANY treatment for these conditions.

On to genetic conditions.  I think genetic conditions have already been spoken for in all of the preceding posts – because all disease is a mix of genes and environment, and so all of the conditions spoke about, either explicitly or implicitly, are genetic to some extent.  That said, I believe genetic diseases, and genomic signatures of attributes of disease, like tumors, offer ways to quantitatively measure expression thereby offering a new level of scientific scrutiny for disease.  While most genetically and genomically authored tests and treatments are nascent and have not yet been scrutinized, we are seeing some assessments of genetic tests, at least.  These are not complete comparative effectiveness studies, but they use methodology that might offer something to the field of comparative effectiveness.  If the field does use methodologies like those of EGAPP, then it will be important to do a broader assessment of the methodology before wide spread implementation.  From the website, “The project’s goal is to establish and evaluate a systematic, evidence-based process for assessing genetic tests and other applications of genomic technology in transition from research to clinical and public health practice.”  There are those who ask why almost all tests that EGAPP has assessed have failed to meet the requirements to pass into clinical practice, when some of these tests have done so in a variety of ways.  EGAPP is a good example of how hard it will be to do comparative effectiveness, since its assessment (far from comparative effectiveness) is so difficult, resource and time consuming.

However, I look forward to our foray into comparative effectiveness.  I believe it is time for the practice of medicine to move from being a cottage industry.  Comparative effectiveness, coming of age in the genomic/informatics era, while we move toward individualized medicine (commonly known as personalized medicine), will be an effective tool if, in the words of the post by Randel before me:

“A fair, open, cooperative public/private process, if designed properly will enhance the information needs of patients, physicians, and scientists and eliminate wasteful and ineffective medical technologies and procedures. Implemented without a fix of the payment system, however, the fear that this may stifle access and innovation will be realized.”  If we wish to move medicine out of the cottage industry realm, reimbursement has to come too.  There are exciting months ahead of us – let’s not call each other names like rare or common, genetic or infectious, popular or unpopular.  No disease, condition, or disorder should be left standing around the edges of the dance floor while the rest are dancing.

Stay tuned to the collaborative discussion about health reform resulting from the flash mob on June 17, 2009.

Inform Health Reform

http://fastercures.blogspot.com/2009/06/fastercures-joins-healthcare-advocates.html

Evidence-based public health and medicine strategies are necessary to decrease variation of service delivery that impacts and rations care to Latinos, especially in our poor neighborhoods. Medical treatment should be based on comparative effectiveness value of treatment strategies that produce the greatest benefit for the Hispanic community at the lowest cost. We recognize that comparative effectiveness research is about value in health care. We also heed the concerns of those who have warned to beware of a “one size fits all” approach that could decrease access to treatments for minority patients. However, NHMA believes that comparative effectiveness research will add to the body of knowledge for reducing health disparities for 1) physicians to use to improve quality care for patients; as well as 2) for administrators to use to improve health systems for delivery in following priority areas:

1. Cultural competence and health literacy research in order to ultimately change behaviors and improve lifestyle in our communities
2. Effective ways of communicating with Hispanic patients and their families
3. Knowledge about health disparities interventions between hospital systems and clinics that have longstanding experience with Hispanic physicians and their patients
4. Innovative research targeted to Hispanic patients and their families
5. Integrated case that is outcomes based – and with mental health and oral health as well as physical health

The National Marrow Donor Program® (NMDP) recently stepped up its donor recruitment efforts with two key changes: (1) Renaming its donor registry, and (2) Expanding its online outreach efforts with social media tools.

The NMDP donor registry, newly renamed Be The Match (BeTheMatch.org), has a Facebook cause, a YouTube channel, a MySpace profile and group, and it has presences on BlackPlanet, Plaxo, and LinkedIn.

The Be The Match website is engaging, it encourages communication among site users, and it facilitates the organization of donor drives, fundraising, and other events.  It even has its own social network – LifeJourneys Transplant Community.  Members, called Champions, can create Tribute pages to share stories, honor or memorialize loved ones, recognize accomplishments or milestones, and raise funds for the Be The Match Foundation.

The marrow donor registry is in desperate need of more donors overall and greater diversity of donors. Finding a genetically compatible bone-marrow donor for a patient in need of a transplants is difficult under any circumstances.  For patients of mixed racial or ethnic backgrounds,the odds of finding a match are even slimmer.  One patient facing this obstacle is Natasha Collins, a 26-year-old medical student with recurrent leukemia.  When doctors said she needed a bone-marrow transplant, Natasha’s community at Yale reached out to communities online to raise awareness and recruit marrow donors, and the results so far are impressive and encouraging.

NMDP’s innovative approach “personalizes the transplant or donation experience and gives other families hope while inspiring people to support our life-saving work.”  It’s an inspirational example of how new media can be used to address communications needs – in this case, NMDP can more effectively communicate with and recruit members of key demographic groups to the marrow donor registry.   This improvement could help save thousands of lives, and even close the gap between white and minority patients’ odds of receiving needed transplants.

Learn more and join the marrow donor registry at BeTheMatch.org

Sources:

Leinwand, Josh “Community: Online Bone Marrow Drive” The Health Care Blog (April 30, 2009)
Landro, Laura “Building Diversity in Bone-Marrow Registries” WSJ.com‘s “The Informed Patient” column (May 27, 2009)
Claeys, Catherine “NMDP Renames Bone Marrow Registry to Be The Match” National Marrow Donor Program News Release (April 7, 2009)