I don’t think we in health policy really understand how complex our systems are and what manner of challenges – some of which we created – present themselves in clinical care.

It was Dr. Christine Sinsky who enlightened me. She said that just five years ago, a patient with a 143/82 blood pressure, 1.4 creatinine, 128 fasting blood sugar and 189 cholesterol was advised to exercise and lose weight. Today, that same person has hypertension, stage 3 kidney disease, diabetes, hyperlipidemia and is a candidate for four medications and ongoing monitoring.

Citing data from the New England Journal of Medicine, she added that a Medicare patient with diabetes, hypertension and depression with a complaint of headaches is subject to 56 different quality measures.

The complexity of those – and other – clinical situations is something she manages with smart system integration; no doubt you’ve seen her publications on those methods. I can’t help but wonder if CER – not as it is imagined and promised, but as it will be realized – will help or hurt clinicians like her and patients like hers. As a policy maker of longstanding, I have to admit that we generally had the best of intentions, but always created negative unintended effects.

Will we do that again? Have good intentions but negative effects? Only time will tell. Since all of us will soon be walking the territory, I’m offering the beginnings of a map in this blog; a map intended to navigate the territory better. I look forward to the ways others might add to our collective understanding of the landscape. The map is not the territory, as they say, but I believe that the better we explore it now, the better will be the chance that those who traverse it can avoid Donner Pass scenarios.

I currently see 7 components on the CER Map, and each of those has a set of interrelated policy issues. I’m interested if you see the territory differently and if you have components and policy issues that illuminate this endeavor further. As you do, remember Dr. Sinsky and Donner Pass.

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I’ve been tasked with presenting the genetic and rare disease perspective on comparative effectiveness.

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

The Top headline of FDA News Device Daily today read, “Comparative Effectiveness Research has Benefits, Risks Experts Say”. Why would Device Daily consider comparative effectiveness to be risky? Many obvious concerns come to mind. There are distinct risks that the process imposed on the device industry may stifle growth. Worries abound related to the direction policy makers may employ such as when studies will be required (e.g., at the early stages of development, or later in the cycle of real-world experience), how studies will be conducted (e.g., by the government or a public/private entity), who will determine the type, scope, design and rationale for conducting such studies, what the studies will be used for (e.g., to restrict coverage, to control access).

The medical device industry has legitimate reason to worry from the increasing banter of politicians and inexperienced policy makers suggesting that comparative effectiveness controlled by a new government agency will be the silver bullet to manage unbridled utilization of medical interventions. Those experienced in device trial design and commercialization strategies for devices know that the struggle to move new innovation to the patient already takes years driven by inconsistent and irregular evaluative processes imposed by technology assessment authorities in some 3000 private payer health plans, individual hospital technology assessment groups, state Medicaid coverage entities, and Medicare local and national coverage processes. Adding another evaluative process, an entity to conduct comparative evidence research, rightly gives technology manufacturers who are currently subject to multiple assessments reason to question the true utility of another over-arching authority.

To seriously understand why and how procedures are or a technology is properly used (and is it cost-effective?) one must examine how technology use (or underuse) is linked to the payment process. Few policy makers understand the complicated payment system for medical technology that rewards doctors for the most acute, lengthy, or complex procedures performed in the highest priced site of service. Until we correct the arcane formulas that punish any technological advance that is simpler, more efficient, and delinked from physician time, any “comparative effectiveness” study is irrelevant. To recoup the extraordinary costs of development, manufacturers and physicians often have no choice but to seek fair payment through complicated coding processes that are completely disassociated from the true value of a device or procedure.

Innovators need a crystal ball to commercialize. The investor community, who fuels the pipeline of great new technological advances, has serious concerns about how the new comparative effectiveness entity may affect the future, especially the amount of investment it will take to bring something promising to commercialization. New investors, particularly private equity and hedge funds, are likely to severely curtail device investing due to the uncertainty of the expected increased development costs or delays to market.

So, Is comparative effectiveness a rational approach to managing utilization and costs?

Indeed, in principle, we need more and improved information to ensure we are wisely using resources. Randomized controlled trials (the foundation of comparative effectiveness research) have a role in large target populations, where making the wrong recommendation is high. In addition, it is important to model the risk and potential consequences of making the wrong recommendations. Failure to develop a rigorous, systematic approach to evaluating tests and interventions can lead to mistakes—good tests for instance may fail to be adopted, and bad tests may be the norm. Be wary of the manufacturers that argue RCT’s are not feasible under most circumstances. Nonetheless, we need a new paradigm for evaluation that is transparent, independent, rigorous and scalable.

The era of “trust me” science is over. We must more directly rely on the good science and studies generated by the FDA—the pre-IDE process—the very important and time-tested process – and acknowledged as valuable by all parties. Use new study approaches developed at the FDA to inform decision making and increase the rigor and scalability of these methods and apply to “comparative effectiveness” research.

In the words of Henry Waxman, Chairman of the House Energy and Commerce Committee, “We need to compare whether some of these new ideas are really advances or more costly alternatives to what we know will work”. Medical innovators with products that improve patients’ lives passionately embrace proving their worth.

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.

Caregivers need all the help we can get in navigating the confusing and often conflicting health, medical, and financial decisions required to support a family member with severe or chronic health conditions. My husband, Paul Berger, suffered a severe stroke from a ruptured aneurysm at the young age of 36. Our insurance covered his acute medical needs—brain surgery, hospital care, and even some rehabilitation services. Reimbursement ended when he was discharged from the rehab unit of the hospital, but he still needed—and could benefit from—long term speech, occupational and physical therapy.

The first decision was how to continue care. Should we try to coordinate outpatient care through the hospital, or through independent practitioners? Should we sacrifice our savings by spending a lot of money to extend his inpatient time at the hospital or transfer to another less costly one nearby? Should we sacrifice our time together and support of local family and friends to send him out of town to the state’s only comprehensive rehab facility run by the department of vocational rehabilitation services a few hours away?

In my professional life, and intellectually, I strongly supported community-based care. My gut told me that Paul needed to stay connected in town, and find a way to make it work from home. My heart didn’t want us to be separated. I became Paul’s “case coordinator” and orchestrated his weekly therapy schedule, periodic doctor’s visits, paperwork, prescriptions, equipment, home modifications, a daytime driver/companion/homework helper (since I continued to work full time), vocational rehab assessments, contact with his employer, and many of the chores Paul had handled—taking care of our finances, among others.

This was twenty years ago. At the time, AHRQ’s predecessor agency had the ambitious goal of writing clinical practice guidelines for major conditions affecting Medicare’s budget. Cataract surgery and treatment of benign prostate enlargement were at the top of the list. Post-stroke rehabilitation made it into the mix, and Paul and I testified during a public hearing. We also coordinated testimony by speech and physical therapists to talk about the need to clinically recognize that stroke survivors – like Paul – could continue to make progress many months, indeed years, after their stroke.

These guidelines are in the archives at AHRQ. A few years ago, the Department of Veterans Affairs developed a set of post-stroke rehabilitation guidelines. I have seldom, if ever seen these guidelines provided to survivors and their families.

I believe that for comparative effectiveness research (CER) to be successful, meaningful public outreach is needed to get the information into the hands of the patients and their families. CER needs to provide advice for real life decisions in real time. Studies must be designed with the patient in mind. Myrl Weinberg, President of the National Health Council, said it best:

“Comparative effectiveness research should supply us with good evidence and data about what works and what doesn’t. However, it should not be just about one product against another, or treatment process, or combination thereof. We also need to look at how different delivery systems can be compared.” www.nationalhealthcouncil.org

My organization, the National Hispanic Medical Association, is committed to improving the health of Hispanics and other underserved. We support policies that will reform public health and medical services to decrease health care disparities and improve the health status of vulnerable groups. The National Disparities Report by the Agency for Healthcare Research and Quality found that our community has the worst access and quality care compared to non-Hispanics in the nation.

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

“$2.5 Billion spent: no alternative medicine cures” screamed the headline two weeks ago. “You expect scientific thinking” one expert was quoted as saying, claiming that it’s become “politically correct to investigate nonsense.”

So what’s the real issue here? Better yet, is there a way to bridge the gap between Western and Eastern philosophies so that the constituent that matters most in this paradigm — the patient — wins?

I believe that when it comes to comparative effectiveness research (CER, i.e. the efficacy/superiority of one drug or modality compared to another), the heart of the West vs. East battle is two-fold and until we find ways to overcome philosophical barriers, never the twain shall meet.

First, we must examine the funding factor. Notably, most Western studies have been and continue to be privately funded and simply fade away with little fanfare if findings are negative or inconclusive. Conversely, a majority of studies that examine “unconventional” or alternative treatments have had the taxpayers footing the bill. Consequently, let’s ask what we can do to engage institutional and pharmaceutical interests so that the funding conundrum is more equitable?

Second, (and more importantly) are Western researchers attempting to fit a square peg into a round hole? Does ‘one size fits all’ work? Eastern research has long been based on an inductive method that relies on direct observation of the individual and his/her relationship to environmental insults. On the other hand, Western research is reductive (or deductive) with general observations evolving into a statistical design that leads to certain conclusions. Although there has been a movement within the Eastern research community to incorporate traditional Western methodologies (e.g. control groups, randomization) one must wonder if by doing so (and thereby eliminating the subjective element that has driven data collection for centuries) the modality under investigation becomes diluted in terms of quality of practice?

Rather than screaming ‘foul” and “nonsense,” shouldn’t we be encouraging innovation in scientific methodology and CER in ways that integrate Eastern inductive approaches into Western reductive strategies so that the researchers can truly measure efficacy? A new paradigm is a win-win for all.

With all the chatter and perhaps now “ twitter” about health care reform, one area has gotten a lot of attention and it is an issue that is near and dear to the Society for Women’s Health Research—that is comparative effectiveness research (CER).

Since it is accepted knowledge that women and minorities were not, and are still not, to the degree they should be, included in clinical trials, there is much we are learning and still do not know about sex and ethnic differences in terms of prevention, diagnosis and treatment. My concern with CER, therefore, is how differences in effectiveness and treatment will be determined. Several genetic, hormonal, environmental factors influence health and disease in particularly different ways in women and men. Because of that, CER must study both men AND women and analyze fully any sex based difference in disease prevalence, treatment options and procedures. Those decisions must correlate to real world experiences.

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This month, Disruptive Women welcomes Brent Shafer, CEO, Philips Electronics, North America, as our June Man of the Month. Below, he shares his thoughts on the funding of healthcare reform.

After years of stops and starts when it comes to healthcare reform, it appears that we are now moving forward at lightning speed. Perhaps so fast that we are trying to change a complex system without the required due diligence needed to make sure that we preserve what works. It has always been the conventional wisdom of most policy makers that true reform needs to be done incrementally, not in one giant overhaul. The growing number of Americans without access to healthcare has increased the urgency to “do something.” Although many are frustrated with what has been perceived as “all talk and no action”, pushing for health reform at ANY cost is not necessarily the answer either. The projected price tag to overhaul the system—$1 to 1.6 trillion dollars—is staggering. And, frankly, the $1 trillion dollar question is no longer “what do we need to change to make it better” but “how are we going to pay for it?” So while we are busy talking about everything we want to add to the system, the strongest undercurrent on the Hill right now is what needs to be taken away in order to pay for everything.

Medical imaging, for example, is one of many “pay-fors” currently on the table. The Obama Administration has proposed that Health and Human Services (HHS) base reimbursements for advanced imaging services in non-hospital settings on the assumption that physicians operate imaging equipment 95% of the time that the office or freestanding imaging center is open . Because of the way the formula is calculated, this proposed change will drastically cut payments for services already significantly impacted by reductions in reimbursements from several regulatory and policy changes, including the Deficit Reduction Act of 2006. The Administration has focused its proposal on one data point in an extraordinarily complex formula and did not consider other factors such as the way CMS maintains the budget neutrality of the Physician Fee Schedule (PFS) and the way it calculates payments for overhead and indirect costs for PFS services. All of these factors, when viewed as a whole, actually undervalue imaging services, instead of overpaying as assumed by the Administration.

As pointed out by the Access to Medical Imaging Coalition, the President’s proposal is similar to past ones advanced by the Medicare Payment Advisory Commission (MedPAC) which were based on a survey that relied on data from only six urban medical imaging centers. Also, according to AMIC, the methodology used by MedPAC to make its utilization assumptions did not account for the health or age of the patient – both important factors accounting for patient preparation time – the single biggest determinant affecting the length of an imaging appointment, and ultimately utilization rates. Denying providers adequate payments for the services they provide may account for some short-term savings to Medicare, but it ultimately could result in access problems for Medicare beneficiaries, especially in rural areas.

There is no argument that there is waste in our current healthcare system. We need to change the way we deliver and pay for healthcare in this country. But cutting payments for valuable services is not the way to fund health reform. We must focus on innovation that increases value by improving care for patients and helps realize substantial savings by enabling healthcare professionals to deliver more efficient, coordinated care. By focusing on patients and care providers, we can work together to advance healthcare and drive for goals like better diagnosis, more appropriate treatment, faster patient recovery and more effective management of long-term health—all of which can help drive down the cost of providing care. Right now we are trying to chip away at an antiquated payment system by cutting payments and containing services, instead of really focusing on how to change that system to better reflect the way healthcare can be delivered today. We have a great opportunity right now to really improve our healthcare system – let’s slow down a bit to make sure we do it right.

It is with great pleasure that I announce the addition of five new bloggers to the Disruptive Women family. Please welcome:

• Liz Scherer, Health Reporter & Creator Flashfree blog
• Nancy Singer, JD, President, Compliance-Alliance
• Sally Greenberg, JD, Executive Director, National Consumers League
• Santi Bhagat, MD, Founder, Physician–Parent Caregivers (Focus on chronically ill children and young adults)
• Val Jones, MD, Medical Blogger and CEO, Better Health

To learn more about these dynamic women, check out their bios.

Lisa Salberg was diagnosed with Hypertrophic Cardiomyopathy (HCM) when she was 12. When she was 22, she had a stroke and almost died three weeks after her wedding. The day Lisa left treatment, her 48-year-old uncle died of the same disease.

When Lisa was eight months pregnant, her 36-year-old sister died of HCM. Lisa raised her niece and nephew. (Her niece has the disease.)

Lisa gathered her family together; researchers studied their blood and isolated the gene.

The bad news was that researchers determined that Lisa’s daughter had the gene for the disease too.

So when Lisa’s daughter was 10, doctors surgically implanted a defibrillator in her chest as a preventive measure to make sure her daughter didn’t die the same death as her aunt, great uncle, grandfather and great-grandfather.

“We knew she was a gene carrier,” Lisa says. “She’s at high risk. We knew the family history. We opted to do it to protect her from sudden cardiac arrest.”

Linda spoke with Disruptive Women’s Wendy Grossman about how she now works to educate both doctors and patients about her HCM as the founder and CEO of Hypertrophic Cardiomyopathy Association.

DW: How are you disruptive in healthcare? You were very disruptive in your family’s healthcare.

LS: Yes, but that’s a whole other issue.

Let me give you a little bit of history. There aren’t many physicians who truly understand the disease that I have. When I first got active there were only three or four programs in the entire country that have programs that specialized in the disease. You were lucky if you could find one because there wasn’t really a method to accessing them. My goal has been to insure that everybody in North America has access to quality care for their disease no matter how uncommon people might think it is.

By having this philosophy, that everybody has a right to have a specialist who actually understands their disease, we began building centers of excellence around the country and encouraging these large-scale programs to train others. And help patients get to these high-volume programs so they can get the best care. Here we are 13 years later, and we have 17 programs in the United States.

DW: Wow.

LS: Why is that disruptive? Because you’re not staying in your own community all the time. You can’t. The best doc in your town might be a great doctor, a wonderful human being, and be really good at handling lots of different diseases. But if you have a disease that only affects 1 in 500 people, the chances that your local guy has ample experience with that disease is not really good.

We think you get better care when you go to somebody who has seen a lot of people like you.

There is a really particular surgery for HCM that should only be done by a doctor who does a lot of them, because it’s tricky and it’s easy to screw up.

We had a guy in April who thought his local doc could try it.

And at the ripe old age of 39 he was pronounced dead. He died 7 days after the surgery. Yes, the surgeon was a good surgeon, but he didn’t have enough experience with this particular procedure. And this guy died.

Had he gone to a center of excellence and had high-volume experience with that surgery his likelihood of surviving would be 99.5 percent.

DW: Did you talk to the man before his operation?

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No, not politically right. Right, as in “correct.” And not politically correct, just “right, correct.”

In fact, in the past few years I’ve been politically incorrect according to a number of my critics. I have said that patients have a responsibility to play in the course of their own health and care.

It’s something I believe as a patient myself and as a policy maker as well.

My critics believe that in saying so I am “blaming patients” for their illness. Quite the contrary. I believe I am empowering – and I hope activating – them. I’d prefer that I – and they – not be a victim of whatever has befallen us. The best way I know to do that is to get activated and involved – even if that means something as simple and helpful as breathing well through the worst of times.

My views were confirmed when I saw the award-winning “Smile Pinki” on HBO last evening. This compelling documentary of the work of The Smile Train¹ broke my heart. It also healed my soul. What an organization! What a venture into providing free surgery to care for children with clefts in India (and other countries)!

The circumstances of these young lives are devastating, but the eyes of the children, the obvious potential of life within them and loving tenderness of their parents keeps you watching. It was late, I was tired and faced early calls today, yet could not walk away from the TV.

Then comes the soul part for me, the part that makes me forget the angry attacks I’ve received. A hospital worker provides discharge instructions to a group of parents on how to care for their children at home and delivers the empowering message.

To paraphrase, she says, “Since this hospital has helped your children, you have the responsibility to help others, to tell others about us and to help them get the 200 rupees to come² here. This hospital is useless without patients. You are heroes, this is a big country and we can cure others. Tell them about us.”

The film ends with a sense that the parents will do just that. Despite illiteracy, the economic poverty and hardships of their circumstances, the discrimination encountered by their children and the blame from and rejection by their in-laws, you get the impression the message got through.

The parents took bold steps for their children and the children showed amazing spirit and courage themselves. That’s taking responsibility at its best and it will be good enough if they stop there. I suspect, however, that they’ll do even better and reach out to help others. And it does not get any better than that.

If they can do it, so can we.

Why am I smiling? Not because I was right, but because I followed up on my soul’s leading and checked out The Smile Train. Then, I donated. Our firm supports projects to improve the health of women and children in the developing world. Today, in some small way, we helped to heal the smile of one child and the heart of that child’s Mother.

References
1. www.smiletrain.org
2. Care provided to the children is free, but parents must provide for transportation and food costs.

The mission of the National Health Council (NHC) is to provide a united voice for people with chronic diseases and disabilities and their family caregivers. We envision a world in which all people receive health care that meets their personal needs and goals. We need Congress to enact meaningful health care reform that will Put Patients First^®.

The NHC has started a Petition for Health Care Change and set a goal of collecting 1 million signatures in 2009. This effort will demonstrate to elected officials that the public believes we need a health care system that will cover everyone, curb costs responsibly, abolish exclusions for pre-existing conditions, eliminate lifetime caps on benefits, and ensure access to long-term and end-of-life care. The patient voice must be included in the dialog for health care reform.

The potential for meaningful reform is greater than ever and we need people to act NOW! Please sign the petition for health care change and share the petition with your friends and family.

It will take a united patient voice to ensure that quality, affordable, and accessible health care becomes a reality in this country. For more information about the Campaign to Put Patients First, please contact the National Health Council at info@nhcouncil.org.

On June 17, 2009 from 12-4pm EST, individuals in the health community will come together for an urgent meeting on Healthcare Reform. This meeting was convened in an open partnership between health organizations, in response to the growing dialogue on health reform.

The impetus to pass comprehensive health reform legislation continues to grow as an energetic Congress and new leadership in our federal health agencies provide unprecedented support for expanding access to quality healthcare. The road ahead is both exciting and full of the unknown. Congress is promising passage of healthcare reform this summer.

Now is the time for us to come together in urgency and openness to articulate our shared principles that focus reform on what truly matters: improved health for individuals, families and communities.

Bloggers representing each of the co-conveners will be posting on this blog in preparation for, during, and after the urgent meeting on June 17th. We invite you to join the conversations posted here by sharing your ideas, energy, and suggestions for how we move forward in this process. Push each other to think about big picture issues in health reform and how they impact us all.   You can post here or at: Inform Health Reform Blog. In addition to using this blog for virtual participation, you can follow the meeting conversation on Twitter! Follow and contribute to the conversation by using hashtags #healthreform and #hcrmtg for your tweets.

The following guest post is written by Linda Brodsky who spent 25 years building a well-respected department at the Children’s Hospital of Buffalo. She also became the first women ever, in any surgical department, to be promoted to tenured full professor of otolaryngology and pediatrics at the State University of New York at Buffalo. At the top of her career, she became aware of information that led her to believe that her she was a victim of gender discrimination, and she spent the next 10 years fighting her way through a legal labyrinth. Since the resolution of her legal battles in 2007 and 2008, she is devoting her energies to changing the status quo for the next generation of women physicians.

It’s not a question of IF you’ve been affected by gender inequity in healthcare, but HOW.

As a pediatric otolaryngologist who has faced gender discrimination in her own career, I’ve become what I like to call an “accidental expert” in the prevailing and often unfair treatment of women physicians. Now I’m launching a book project to examine how gender inequality in medicine is affecting the quality of healthcare in America. I want to know how the challenges facing women physicians and surgeons are affecting the way health care is delivered in our country. I am particularly interested in stories that illustrate how the unequal treatment of women in medicine has a negative effect on everyone, and I’d like to gather stories of all shapes and sizes—from physicians, patients, nurses, moms, men… Basically, from everyone.

Your stories need to be told.

Do you believe that you were not taken seriously or given optimal treatment because of your gender? Did you ever wonder if your physician received the same access to the resources you needed for your health? You don’t have to be a physician, nurse, or healthcare worker to have seen or felt the effects — you just have to be someone who has been to the doctor, has taken medication, has followed the advice of a medical study, has tried to obtain heath insurance or has navigated the healthcare system in any way with difficulty due to gender-related issues. And if you are a doctor who has a story to share, I’d love to hear from you too.

So today I’m calling on all of those who have felt the effects of unequal treatment to share their stories for the book, which will be published early in 2010. Stories empower us and put real people and real events behind the statistics that cannot touch our hearts, enrage our sensibilities, and move us toward action.

I hope you will take the time to share your stories with me. You can submit them at the link above or by emailing me directly at linda [at] lindabrodskymd [dot] com. And please, spread the word to your immediate world! Thanks so much to you all.

Dr. Linda Brodsky, MD

www.lindabrodskymd.com

www.thebrodskyblog.com

Twitter.com/LindaBrodskyMD

I am so thrilled to see the Tobacco Legislation pass the House and Senate and the President’s promise to sign it. It is a major step forward, but we can’t stop there. I urge the President, the Secretary of HHS, and other leaders to use this as a leverage to ratchet up the pressure to prevent teenagers from starting to smoke and to help smokers battle the addiction. The savings would be enormous, in health care costs, as well as quality of life and loss of life due to smoking-caused heart disease, emphysema, cancer, and suffering from a host of side effects in the function of every organ system: skin, teeth, digestive, bladder, brain, eyes.

My father died at age 65 due to heart disease caused by his heavy smoking. When he promised to stop, he would smoke in the car and come into the house, not realizing that we non-smokers could smell the detritus on him. My brother died at age 40 from a terrible head and neck cancer directly related to his heavy smoking. My mother-in-law died from Chronic Obstructive Pulmonary Disease (COPD), from heavy smoking for most of her adult life, even though she gave up smoking 15 years before her death. I think my father, brother, and mother-in-law started to smoke because it looked cool or tough or sexy, and the nicotine gave them a little “high,” and a way to socialize. They just couldn’t break the habit or didn’t believe that they would suffer the consequences.

When I see others smoke, especially twenty- and thirty-somethings, I want to walk up to them and pull the cigarettes out of their mouths, but that would probably be considered assault. Even the new Tobacco Bill doesn’t condone such action. But something equally compelling is sorely needed that can reach out to the individual smoker, provide hands-on medical intervention and coaching to quit smoking and retrain physical and social habits, reward success and protect against relapse.