By Glenna Crooks. I still remember the first patient advocate I ever met – Henrietta Aladjem. She outlived predictions of imminent death from Lupus and despite her condition helped others, providing information, inspiration, advocacy and hope everywhere she went. Gracefully. Persistently.

Since then I’ve met more than 10,000 advocates – some of them children – in 26 countries. In their work they help millions of patients and families address hundreds of diseases and the consequences patients face to get insurance, education, housing, employment and civil rights. In many cases, they or a loved one were in dire need of help they did not receive, so they vowed to help others. It was  a way to reclaim  power, to work through grief or to constructively use anger.

It’s impossible to be with advocates and not respect their dedication, courage and energy. That is especially the case for those working ‘closer to the ground’ where the real suffering of effected people is most palpable. I especially admire them when they venture into unfamiliar policy arenas to tell the stories they hope will create better solutions, particularly from governments. As Chair of the National Commission on Rare Diseases, their stories touched my heart and I still remember their faces.

Regardless of how well they succeed on behalf of any one patient , with one policy maker or in one disease situation however, there will always be more to do. I’ve seen advocates respond to this; having met their initial objective they band with others to help in new ways.

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Debates continue about the impact of health reform on small businesses. Mine is a small business so I’ve been paying close attention. I’ve even read every line of this legislation – three times. And every pundit analysis I can get my hands on.

My role as a strategist requires that I understand the law. My role as a business owner requires that as well. Most analyses make broad-brush statements and it’s not possible to know the full impact until each business does its own analysis. Here’s mine.

Unfortunately, there are no ‘upsides’ for my employees or business:

• My company is too small to be required to provide health insurance. That’s of no matter, I’ve been providing it all along.
• My company is unlikely to grow to the size required to provide health insurance. That’s of no matter, I’d do it anyway. As an employer I know the value of a healthy workforce.
• My company is too busy to even consider applying for grant funds for worksite health promotion and disease prevention. We’d lose productive work hours watching for RFPs, framing proposals and even more complying with paperwork. That’s of no matter, I’ve been providing that all along as well.
• My company is composed of workers too highly compensated to qualify for insurance tax credits, and I suspect no company like mine will qualify either. My employees are knowledge workers with advanced degrees and compensation above the $50,000 annual ceiling for the tax credit provisions.

Unfortunately  there are ‘downsides’ for my business, all related to new IRS rules.

Section 9006 mandates that about 18 months from now, my business – which really means my Executive Assistant, who is already plenty overloaded – will be required to issue 1099 tax forms to any individual or company from which we buy more than $600 in goods and services.   

We already issue an IRS Form 1099 to people like freelancers who are not ‘incorporated’ business entities. In any given year, that number ranges from 10-14.

That means we don’t send a 1099 to other incorporated businesses, that is, to Amazon, Amtrak, US Airways, Continental Airways, British Airways, Air France, Westin Hotels, Marriott Hotels, Holiday Inns, Kinko’s, Federal Express, Staples, Office Supply, Office Doctor, IT Edge, Samsung, Independence Blue Cross…I could go on.  

This new 1099 reporting is intended to capture currently unreported income to generate more government revenue and help offset the cost of reform. It’s been defended as an alternative to raising taxes on small business and is seen to be a fair trade for $35 billion in tax credits small businesses get under reform. It’s an attempt to collect the nearly $300 billion of income that the IRS says goes unreported.

I have three problems with that:

• First, my business won’t see any of that tax credit benefit, 
• Second, my business will incur additional costs, not only in staff time for obtaining tax IDs from every vendor, but also in accountant fees for processing and mailing the forms, and
• Third, my business is being required to help the IRS monitor tax reporting compliance of other businesses.

At this point, we estimate the number of 1099s we will file will increase to 1,000. I’m not sure how a small firm like mine is going to find its way through the mazes of large companies to get the information, but I’m angry that this law – touted as having so many ‘upsides’ – provides none for my firm but asks us to carry an additional burden that drives up the cost of doing business.

I can live without the ‘upsides.’ I’ve provided insurance and promoted wellness all along and will continue to do so.

But now, I’ve been mandated to become a de facto agent of IRS enforcement. Surely, the IRS has better tools for finding unreported income than asking small firms like mine to do it for them.

By Glenna Crooks. On Sunday July 4, HealthDay News reported on a June 30 Environmental Health Perspectives item that the health benefits of cycling in an urban environment outweigh the risks. Huh? I asked myself.

I live in Center City Philadelphia and far too many cyclists – I’ll go out on a limb and say a majority – are a menace. They ride on pedestrian walkways, sometimes IPod hearing-impaired, weaving through pedestrians. They ride on the wrong side of the roads, the wrong way down one-way streets and weave between traffic lanes. They do not stop for red lights. In fact, some bikes don’t have brakes.

I’ve been nearly hit twice by cyclists running red lights, coming from between trucks and therefore not visible to a pedestrian until they appear suddenly, inches away. And, at 6:10 AM several months ago, while taking a work-out jog on a paved path along the Schuylkill River with my trainer Morris (March Man of the Month), was rammed from behind by a cyclist. Though it was clearly past dawn, he did not see me, perhaps because his head was down to lower the drag created by an upright body, going fast on a path that is frequented by walkers of all ages.

The accident has cost me nearly $500 a month in out-of-pocket expenses since, to address the back pain it caused. I’m lucky, though. Around that same time two pedestrians were killed in my neighborhood by cyclists.

I had visions – no, nightmares – of public policymakers seeing this report and encouraging more cycling in the US. Who on earth would believe that cycling was safe, I wondered? How could I change their minds? I had to read beyond the first sentence to understand. (more…)

By Glenna Crooks. Rittenhouse Square in Philly, a holiday weekend and great weather made for the perfect place for light reading this weekend. I got magazines with the intention of doing just that – and did. It was great to be outside on warm, breezy days.

However, my mood soured about half way into Spirituality&Health, reading an article about a possible new cancer therapy.

It describes the observations of Mamdooh Ghoneum, PhD: cancer cells are attracted to, ‘eat’ heat-killed baker’s yeast and then die. That’s good news. It happens in labs and in mice, who apparently suffer no side effects. That’s good news, too. Approval for testing in other animals is pending. I hope he gets it. We need progress in the healing of people with cancer.

Why the sour mood? Dr. Ghoneum is hero enough for making the observation and following through with studies. He’ll be all the more heroic if he continues and learns from whatever comes next.

The article does not stop with the ‘scientist vs disease’ heroic tale, however. It goes further to paint an unfortunate and ill-informed, biased contrast – between an altruistic pioneer using his personal savings and fund raising efforts to find a cure vs a greedy, patent-dependent industry hungry to return to shareholders the $800M – $2B quoted as the cost of developing a medicine. It asserts that industry would never develop a ‘natural’ product, saying: “Nowadays, a cancer cure that is all natural, non-toxic, simple to administer and inexpensive to produce has become an economic non-starter.”

Drug Development and Approval. Dr. Ghoneum is currently at the drug ‘research’ phase. This is the easy part. Get past animal research and the ‘development’ phase begins. Move into humans and the costs pile up fast – so do the failures. He’ll face institutional review boards, numerous negotiations with FDA over appropriate surrogate markers and end points, challenges of getting patients into clinical trials, careful management of clinical research sites and exquisite documentation at every stage. This is the phase that washes out all but 1-2 of every 10,000 drugs discovered.

Add to that, this is a yeast product – a biological – which means he’ll have to satisfy FDA that there is ‘batch to batch’ consistency in the product as he scales up for clinical studies and, if the product succeeds, eventual market use.

Since he intends to develop a treatment safe, effective and affordable enough for poor people around the world, he will also face regulatory requirements, and perhaps clinical trials, in those nations as well.   (more…)

By Glenna Crooks. During my years in the Administration I was sometimes directed to draft responses the President would send in reply to letters he’d received from individual citizens.

Sometimes, rather than drafting the letter for him, I’d be directed to reply on the President’s behalf. Such was the case when the White House directed I write to a young boy from Texas.

His father – a young, healthy man – collapsed and died suddenly during an after-work run on the local high school track. Later, at the funeral home, the director complimented the boy’s Mother about her generosity in having donated her husband’s corneas. But there was a problem: it had not been her decision. In fact, until that moment she had not even know her husband’s corneas were removed.

The ‘donation’ was made under Texas law that provides for the ‘presumed consent’ on the part of deceased individuals. A medical examiner was allowed to remove corneas from a deceased person if the examiner was not aware of the relatives’ objections. The law did not require that the medical examiner ask the family before doing so, however. In other words, every one is ‘opted in’ to organ donation unless they ‘opt out’ and the medical examiner knows about their ‘opting out.’ This family, like most in Texas, had never been asked. The wife had never been given the opportunity to ‘opt out’ for her husband.

The boy wanted the President’s help to change the law. He was distressed that his Father was now in heaven and, without corneas, could not see God. He wanted others spared a similar tragedy. I can’t recall what I wrote to this boy in response; I do recall it was a hard letter to write and I doubt my reply did justice to the pain of his loss and his grief over his Father’s blindness in heaven.

That experience came to mind when I saw an AP report that a New York Assemblyman, whose daughter had been helped by two kidney transplants, intended to pass legislation to ‘presume consent’ for not just corneas, but for donations of all organs in the state. If he succeeds, New York won’t be the first state to try, but will be the first state to succeed in enacting that type of legislation.

More than 6,000 people die each year in this country awaiting donor organs. Improvements in surgical techniques and post-transplant medications offer hope to people who only a few decades ago would have had none.  I have seen lives transformed by organ transplants and we need more donated organs, that’s for sure. But can it possibly be a donation if the person or their loved ones are never asked? Is ‘presumed consent’ donation, or is it just plain ‘taking,’ in this case endorsed by legislators?

I think it is ‘taking’ and for that reason, I oppose it.

I can’t stop thinking about that 10 year old boy and his distress. Like him, I don’t want other families to suffer that fate. The joy of one family for the life of a loved one saved by a transplant does not justify the pain inflicted on another family whose loved one’s organs are taken without consent.

By Glenna Crooks. Full disclosure – I’ve practiced yoga fairly consistently for decades. It’s been good for me.

In grad school it helped me stay focused – and calmer – through killer statistics classes. Later, it was a way to unwind at the end of a workday. Still later, it saved me from surgery to correct fairly severe scoliosis. It’s not cured the deformity but I’m virtually pain free most of the time – no small feat for one who spends 18-24 hours on flights and 8 hours standing to facilitate meetings.

More disclosure – I am certified to teach, though I don’t. The same erratic travel schedule that prevents attending classes on a regular basis precludes committing to teaching them. I trained to be able to practice on the road. It was a good investment of my time and funds.

Yes, my time and funds. Anyone familiar with yoga knows that for the most part, students pay a small amount for a class – or series of classes – out of their own pockets. Sometimes, yoga is offered in schools, hospitals, churches, workplaces and prisons and the cost partially or fully paid by some third party. Sometimes teachers donate their services as part of the ‘selfless service’ that embodies the lifestyle.

Recent weeks presented an interesting confluence of events in my life as a yoga-practicing health policy analyst: health reform passed and Yoga Journal published a major article on methods, issues, controversies and implications of yoga research.

I started a yoga research literature review a few years ago. It was to be the opening chapter of an adaptation of my grantseeking guide (see www.strategichealthpolicy.com for a free download), revised and updated for yoga teachers intending to seek and secure third-party – including health insurance – financing support for classes.

I abandoned the project for many of the issues raised in the Yoga Journal article: research methods were relatively undeveloped, uncontestable positive results were scant and within the yoga community both were controversial. That’s right, even the need for research to demonstrate the value of yoga is controversial. Many thought there was proof enough.

Proof enough for an individual to pay? Yes, that’s been well-demonstrated. Thousands of times each day, people around the world pay out-of-pocket to attend classes. Proof enough for a third-party to pay? Far from it, at least as we have defined proof within the American health care sector.

Now, the health reform era is upon us, some people will press for yoga services as a covered benefit and if a serious discussion takes hold – and succeeds – in adding yoga to American health care armamentarium, yoga teachers will face issues common to other product and service providers. Clearly, not all yoga teachers will want to participate and none will be forced, but those who choose to do so will need to address – at a bare minimum – questions commonplace to physicians, hospitals and drug companies:

First, is yoga effective? Any prevention or treatment modality used in health care is expected to be safe and effective, demonstrating that it performs as advertised, promoted and hoped.

That means prospective research, such as trials comparing yoga against a non-intervention, a placebo or a standard therapy treatment, or a study of a sufficiently large population through ‘natural observation’ to gather similar evidence over many years.

Research such as this will raise questions about whether the ‘style’ of yoga matters, how many sessions might be required to achieve results and whether results last after classes are stopped. People in the study will be carefully selected and ‘assigned’ to each intervention group. They’ll be asked about other aspects of their lifestyle to assure that they’re not confounding the results with other possibly-effective therapies.

Side effects will be monitored. Injuries in class or suicidal thoughts outside of class (if any occur) will be noted so that cautionary warnings and contraindications can be addressed in coverage and reimbursement decisions. Other unintended consequences – weight loss comes to mind – will be documented but can’t be claimed a benefit unless the study was specifically designed to test for it.

Research might also need to tease out yoga’s “mechanism of action” as is the case for medications; for example, by what mechanism does yoga breathing techniques reduce hypertension?

Researchers will be required to seek approval from Institutional Review Boards protecting patients, may be required to vet research methods with regulators or payers, will likely be required to disclose financial interests in yoga and if any are found might be precluded from doing research and/or might be restricted from committees that address yoga policy and financing issues – all to assure research subjects are protected and conflicts-of-interest are prevented. (more…)

Disruptive Women welcomes Personal Trainer Morris White as our February 2010 Man of the Month.

A personal trainer for 22 years, Morris White has both men and women – and even children as young as 12 – as clients. He helps them with basic fitness, sport-specific fitness and self defense. He also trains people with special needs, including those with disabilities and eating disorders, and those recovering from a stroke and heart attack.

In his own life, he is a power lifter and a practitioner of Kung Fu, Yoga, desert hiking and survival quests and sustainable healthy living. He is currently working on a fitness community site.

I can vouch for his impact. I’m now in my third year with him, with regular work outs at 6 AM. The benefits have been worth every trek to the gym in those before-dawn hours.

Morris, I’m pleased to have the chance to talk about fitness with you. It’s an important topic, but rarely addressed in this blogspace. How did you get started training?

There were three very influential men in my young life. It was the 1970’s. My Father was a pharmacist and successful businessman who took me to monthly Toast Masters meetings and had me working in the pharmacy on weekends. He taught me the importance of physical poise and presence. One of his business partners was a Physical Therapist who mentored me in anatomy and exercise, from him I learned about anatomy and body mechanics At about that same time, I was introduced to Kung Fu by my best friend’s Father who was a Master of the art.  Kung Fu combined all the earlier lessons and helped me to develop my personal philosophy on holistic personal training.

Those were the years of my greatest lessons.

I attended Temple University but my advisors could not grasp what I wanted to become and what I wanted to do with my life. The usual response was, “So, you want to teach phys ed?” No.

From there to the gymnasiums I went, working under different titles until personal training evolved and became popular.

 What about fitness and training makes it your passion? 22 years seems a long time.

Seeing my mother die at young age and my father debilitated primarily by an unhealthy lifestyle, has made me even more intent to give meaning to my existence by living and enjoying life to its fullest and helping others to do the same through fitness.  The bonus is that by helping others achieve their personal goals, I get to meet great people that, in turn, enrich my life through their collective experiences and wisdom.

How do you approach training?

My philosophy of training is:

• Safety first. You should never be harmed or injured in the course of training.

• Strict, proper form. The best form produces the best, most efficient results.

• Keep moving. A body in motion tends to stay in motion.

Follow those rules and you’ll keep at it, making progress. You’ll avoid injuries and won’t suffer any set-backs in your workouts. You’ll also see results and be able to have an increasingly better quality of life. Even if you’re already fit, you’ll see improvements.  As I like to say to my clients, “one foot in front of the other and you’ll get where you’re going,”

Oh, and one more thing, never imitate what you see others doing in the gym.  So many people do their exercises incorrectly. Others may do an exercise properly but their routine may not fit your desired goals.  Always consult a professional about a new exercise or routine.

Do you have any dramatic examples of client improvements?

I could tell lots of stories of women who come to prepare for their weddings. They’re motivated for sure. Believe it or not, they’ve bought dresses three sizes too small and now need to fit into them. Plus, the regular workouts really help them with the wedding-planning stress.

But the one client and story that really inspired me was a 280 lb sedentary banker who lost the weight and became a marathon runner.

As he became physical healthier, his self-confidence and self-esteem also improved.  This newfound self-respect gave him the strength to not only run a marathon but to walk right out of a less-than-supportive, troubled relationship and climb the corporate ladder to a promotion.

(Laughing) Of course, I cost him lots of money – he kept having to replace his wardrobe as his body changed.

Have you ever seen anyone who did not see an improvement in working out with a trainer?

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On January 23, the Boston Globe reported that Lawrence DuBuske, M.D., Harvard Medical School Instructor, Asthma and Allergy Specialist and lecturer/consultant to pharmaceutical companies would resign his posts at Harvard and Brigham at the end of the month because remaining there would require he cease his work with industry. Failing to do so would be a violation of the Harvard/Partner’s conflict of interest policy.

If the article is accurate and he followed through on those plans, he’s gone now.

I know how carefully industry vets their speakers and consultants. That should come as no surprise. Any event planner, organization or company engaging a speaker or consultant wants just that – an expert.

I have no way of knowing how carefully Harvard Medical School vets its instructors or Brigham vets its clinicians, but I imagine both to be tailored to assure that only the best and only the experts are hired. Surely, were I a student at Harvard or a patient at Brigham, I’d want just that – an expert.

I’ve not met Dr. DuBuske, but ‘on paper’ he seems to be just that—an expert. He’s ‘passed muster’ more than once to gain – and retain – positions at elite institutions. The fact that he has associated with major, respected institutions is a credit to his qualifications.

In addition, he has achieved Fellow status in five major clinical societies: the American College of Physicians, the American Academy of Allergy, Asthma and Immunology, the American College of Allergy, Asthma and Immunology, the American College of Rheumatology and the American College of Chest Physicians. I’ll forego mentioning those organizations in which he is only a member, his European affiliations and all the awards except one – 2004 Distinguished Fellow of the American College of Allergy, Asthma and Immunology.

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Healthy New Year everyone!

Like many people I’m starting the year with healthy – and preventive care – intentions. How about you?

That put a few items on my holiday ‘to do’ list:

• Get a pap smear,
• Find H1N1 vaccine,
• Wrestle the results of a recent bone density scan (Dexa) out of the hands of the medical center and into the hands of my physician, and
• Confirm with Morris White, my trainer, that I’d continue workouts.

The pap smear was easy – this time. I’d not been able to get one during my late-summer vacation visit to the doctor because the appointment was two weeks prior to the annual date of the prior test. That required another trip. Holiday downtime was a good time to do that. Check that off the list.

In doing so, I finally found an H1N1 vaccine dose! Getting a seasonal flu shot was easy at www.phillyflushots.com, but even after calling several immunization providers and both of my physicians at least twice monthly since H1N1 became available, checking websites and following news reports of shots at pharmacies – well, no success. Luckily, my doctor had just received a few doses of H1N1 that day of the pap smear. Check that off the list.

Results of a bone density scan months ago had still not shown up at my doctor’s office. Holiday time was a good time to badger for the ‘results,’ though it was hardly worth the trouble. Turns out  my physician is not part of that medical center’s ‘network’ and can’t get detailed results. Only a note: ‘normal.’ Sorry, that’s not good enough. Neither my physician nor I know whether there has been any change in bone mass since prior tests. Sure, the test results might be ‘normal,’ but the measures might also be trending in a direction that means I’m losing bone mass, something we both should know about. No check there, still on my list.

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The following post by Glenna Crooks, PhD, founder and President of Strategic Health Policy International, Inc, is part of Disruptive Women’s “The Value of Health: Creating Economic Security in the Developing World” series.

Glenna Crooks solves some of the toughest health care problems of our times by distilling chaos and complexity into recognizable and easily digestible, action-oriented insights. Her clients, businesses and governments around the world, have used her Centricity Principle™ approach to create successful organizational, national and global transformational strategies.

The converse is also true. Improving health is an economically wise and productive investment.

In fact, that’s the reason that health systems were established – by the King and the employer – documented as far back as 4,000 years ago.

There is good news to today’s world: a positive cycle of gains in both health and economic security occurs as either one is improved.^[1]

Have we taken the value of health for granted? I think so and find that especially the case among those of us in the health community. We talk endlessly about improving health outcomes as if those outcomes were an end in themselves. We have fallen victim to the notion that health expenditures are a cost, rather than an investment. We have forgotten our origins in economic growth and security. We have set our sights too low.

It’s high time we set higher goals. Disease creates barriers and slows progress towards economic status and security. As health improves, people experience both immediate and long-term economic benefits. Individuals become more productive; they enhance not only the quality of their lives but their capacity to enrich economic well-being.^[2] “Health is an economic engine.”^[3] This is true not only for individuals but also for families and societies.

World Health Organization (WHO) and World Bank benchmark reports outline the relationship between good health and economic development; good health is not only a means to reduce poverty, but also a means to accelerate national and personal economies.^[4],^[5]

• Individual health increases personal productivity and earnings. Extending healthy years of life increases the number of working, income-earning years. Healthier workers are more productive economically during their working years as well.
• Good health reduces the funding required to treat disease, allowing people and nations to invest in other needs.
• A healthy population encourages foreign investment, technology transfer, and facilitates access to global markets.^[6]
• Healthy children are more prepared for school, miss fewer days of school, attend school for more years, and learn more while in school.  In addition, longer life span is associated with more years in school and each year of schooling results in a 15% higher starting wage and a doubling of the rate of subsequent salary increases.^[7]
• Natural resources previously inaccessible due to disease (e.g., agricultural acreage unusable because of malaria) are made available for production and farming.^[8]

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My initial enthusiasm for blogging on the subject of adherence policy “carrots and sticks” faded the more I contemplated the disputes that would arise by suggesting “sticks,” so mostly I’ll – pardon the pun – “stick” to “carrots.”

In recent weeks these blog pages have been filled with ways to support patients: reviewing insights about human behavior, the young, the old, reminder systems, games and team care. In fact, this series could have continued all month and we’d not have exhausted the ways in which patients are supported, encouraged and cajoled to be adherent.

Yes, we’ve dispensed plenty of sugar to make the medicine go down, but we’ve not proposed any “sticks” in the event it does not. Let’s face it; we’re not ready for the outrage in the public policy world if we seriously suggested that patients somehow should be held accountable.

In the private sector, some accountability-style policies exist (though not to my knowledge regarding medicines). For example, one major company warns employees that if they have an automobile accident requiring hospitalization and committed a moving violation or failed to wear a seat belt, they’ll be responsible for paying an additional $1,000 deductible. It’s a policy that requests responsible behavior in return for a benefit. I don’t sense that we’re ready for that same kind of “tough love” talk with patients. Not yet.

I liked Joyce Cramer’s notion of the “patient as willing partner” and wonder if we, as patients, sit at one side of the partnership table, what does “the other side” offer us?

In fact, it offers us a lot in the way of benefits, opportunities and “carrots” regarding our medication needs.

• Availability. More medications are available today than ever before, brought to us by public funding and policies that underwrite the cost of basic biomedical research, science education and advanced graduate training. Public policies also provide intellectual property protection to those who successfully innovate to produce new medicine solutions and then – after a time – allow that intellectual property to be used by others to produce cheaper, generic copies of those once-innovative products.
• Assurances. Medications are studied, reviewed and regulated virtually continuously, by regulatory agencies and major health care systems to assure safety, effectiveness and appropriate use. We can report side effects and are encouraged to do so. Those data are monitored and used to further improve pharmaceutical care.
• Accessibility. Medications are more accessible than ever. There is a pharmacy – on average – at every square mile in the US, each one staffed by experts in the use of medications and the management of complex combinations of multiple products for those of us with multiple chronic conditions. These experts can generally tell “in a heart beat” if the side effect we suspect is the medication or the way we’re taking it. For those locations where the “on average” does not apply, mail order pharmacies fill the gap.
• Affordability. Medications are more affordable than ever. The range of generic and therapeutic substitution options allow clinicians and patients to consider the cost of medicines and to pick affordable choices for the vast majority of conditions treated today. Public and private sector coverage for medicines has never been better and every company has a patient assistance program for those who do not have coverage or cannot otherwise afford the medications.
• Alternatives. In this chronic disease epidemic era a large share of the medications we take are intended to treat conditions that could have been prevented. Public policies have invested in understanding the drivers of preventable illness and educating us on everything from nutrition and exercise to stress management and back-injury prevention. Surely not everyone, but many people can practice the alternatives if they choose.
• Accountability. Those who develop, manufacture, prescribe and dispense medications are held accountable for their mistakes. A company that misrepresents the safety, efficacy or indications for their product is subject to legal sanctions and litigation. Clinicians who inappropriately prescribe or pharmacists who inappropriately dispense are subjected to similar consequences. Preventable errors in hospitals are reported and related care is not reimbursed.

Each of these is important and as patients we’d want nothing less. Can we legitimately ask for more? In some cases, yes.

Those with multiple or serious chronic conditions requiring some of the newest biotechnology solutions face great financial burdens. They can legitimately ask for relief. The same is true for people who suffer from cancer and some rare diseases with very expensive therapies. Then, there are those with currently incurable conditions; they can legitimately ask – if not for a cure – then at least for a treatment.

In return for what we have been given, can something be asked of us as patients? I’d like to think so, but I know of none that would gain traction in today’s debates. Are we ready to suggest that the non-adherent hypertensive patient be charged more for heart attack or stroke care? I don’t think so.

Until we are, we may as well ramp up the “carrots,” so many of which have appeared in these pages, stop the handwringing about the cost of non-adherence and haul out our collective checkbooks.

Perhaps you’ve seen it: the grocery-shopping mom, complaining about a sugar tax, saying it’s hard enough to raise a family in these times.

I saw it, and could not believe it. Was this ad actually claiming that families need sugared sodas to make it through tough times?

It took watching it on line at http://www.nofoodtaxes.com/ads/ several times to see that yes, indeed, that’s what it claimed.

I’ll agree that a soda and other sugared items are a nice occasional treat, but I see no evidence that they’re necessary to keep a family happy – or that there are no alternatives.

I’ve begun talking to kids about what they drink. Here is what I got:

• I used to drink apple juice, now I drink water.
•  I drink water; that’s good for you.
•  I drink milk when I eat and water other times.
•  I used to drink (naming a brand soda) but now I drink water. The (soda) made my feel icky and I did not know how much until I stopped drinking it all the time.

Personally, I’m not a huge fan of plain water. I like a slice of lemon in it.

What about you?

Do you have a favorite alternative to sugared drinks?

Do you have any recipes for the beleaguered Mom trying to keep her family happy in these tough times? Do you have any tricks for weaning a family off sugared drinks?

We start this short Labor Day week on a hopeful note. The President will speak to the nation on health reform in just two days. Perhaps this is the tipping point we’ve been hoping for and it will break the logjams, bring all the players back to the table, keep them there and forge the next steps forward.

Recently, however, is unsettling debate about the value of prevention – saying it costs more and won’t help our health care crisis. Yes, prevention will cost more health dollars. Let’s get over it and move on – and beyond – that. I did on August 1, 2001, just six weeks before that fateful September 11 day.

I was the wrap-up speaker at a conference focusing on resistant pathogens and the problems that could ensue for the American hemisphere from emerging diseases. The audience as comprised of public health, medical and national security experts. The session was broadcast globally to 80 nations in three different languages. I opened with these remarks;

“We began this session stating that our goal was better health outcomes. I would like to propose a bigger goal: world peace and prosperity—for everyone, not just in this hemisphere, but throughout the entire globe.

Peace and prosperity will not be possible if we fear our neighbors for the pathogens they may harbor in a handshake. These will not be possible if we spend our money treating diseases that we could have prevented. These will not be possible if we are burying our loved ones precisely at the time when they are the most economically productive, or, when they are very young or very old and not enriching our economies, but enriching our hearts.”

The reaction was stunning. People cried. Afterwards, when the telecast was done and I came off stage I saw what it might be like to be a rock star. I was surrounded. They came to touch me and to tell me how I had touched them. It was then that I realized how weary we all are of working our best to shave another cent from the health care dollar and how much we all wanted a higher purpose for our work.

Regardless of what transpires in health reform debates, I hope that policy makers will realize that health – though valuable in-and-of itself – is an instrument of bigger goals.

I hope they will not set their sights too low and act as if it’s all-and-only about cutting costs. I hope they will see that a healthy population is a productive one and in this economy that’s exactly what we need: people who are capable of managing the stresses of these modern times, who can work more productively and work longer to bring this nation – and the world – forward to its full potential of peace and prosperity for all.

I just finished a great book: Why She Buys. I was stunned to learn just how much of the US economy is controlled by women: 65% of apparel, 52% of all auto and truck, 45% of consumer electronics and 70% of travel purchases. If influence over purchases is considered, women influence 80% of auto and truck, 91% of home, and 61% of consumer electronics purchases.  

Wondering about health care? It turns out that Dr. Mom makes more decisions than Dr. Welby; directing 80% of expenditures. It’s not just Dr. Mom, I’m guessing, but Dr. Wife, Dr. Sister, Dr. Friend and Dr. Daughter (or Daughter-in-Law) who help others with the health care maze.

A great book. I recommend it, though it raised my ire and blood pressure more than once as I realized how even with that level of seeming economic power that product design, marketing and purchasing is not woman/customer/consumer-friendly.

More women are in the workforce, complicating the activities of daily living.  Have children, a special-needs child and/or get divorced and life gets more complicated still. Time compression and multi-tasking is a way of life. How I wish that health care was like Ryland Homes, who designs and builds for the life a woman leads: a window over the kitchen sink to watch younger children in the back yard as she prepares dinner in open-plan kitchen-family room while supervising the older children’s homework, and of course, a computer workstation to check her own emails. Her day likely starts at 5 and ends at 11, errands are saved for weekends. Getting to the gym? Well, someday…..

Of course, that assumes she’s able to afford a Ryland Home. Many women are not. They face those chores in neighborhoods where the kids are not safe playing outside.

Heaven help any woman if she or someone she loves gets sick. Yeah, heaven help her, because it’s likely that health reform won’t. For women, the “unintended effects” of health policy decisions are not hypothetical. There’s a fight on, a battle, a war on the Hill and we’ll be left to deal with the collateral damage.

Drawing on some insights offered by author Bridget Brennan, sifting them through what I experience and what other women tell me, here are some reasons I’m not buying…

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Should managed care sue patients?

We arrive at the dawn of yet-another health reform effort with laws and regulations already in place to protect patients. These arose in past decades when the healer-patient relationship was eroding, presumably at the hands of uncaring clinicians and for-profit medical enterprises.   

The list of those rights was extensive and today’s debates are adding to the mix – guaranteed coverage despite pre-existing conditions comes to mind. The discussion of patient rights has always been politically attractive and I won’t denigrate any one of them. I’m not just writing from a policy perspective, but a personal one as well. I’m a patient, too.

The discussions of patients’ rights, however, has neglected the flip side of rights—responsibilities on the part of patients, and the support that we all need from our communities to be healthy people. Today’s healers are beset with immense responsibilities, yet with few reciprocal rights of their own in their relationships with patients or communities.

As patients, communities and a nation, we all too frequently fail to follow medical advice or practice healthy behaviors, and yet expect that helath care will ‘make it right’ when we become ill or incapacitated.  We smoke, abuse alcohol and drugs, carry guns, drive fast, forget seatbelts, neglect immunizations, shun prenatal care and spread sexually transmitted diseases. We ignore social problems until they create health care consequences—low birth-weight babies, elderly who lack social acceptability, and teens suffering gun-shot wounds. When these risky behaviors result in chronic or high-cost illnesses and disabilities, health-care providers are expected to assure that we get the care we need, insulating us from the cost of our choices by providing whatever we need within a fixed budget. The time has come to broaden all of our health policy and political discussions to encompass the realities that, with rights come responsibilities.

So some questions:

• If managed care has a responsibility to meet all the patients’ needs, do patients have the responsibility to practice healthy lifestyles?
• If patients have the right to sue health-care providers for the failures to meet the patient’s expectations, do health-care providers have a similar right—to sue patients for the costs incurred from their failures to follow medical advice?
• At what point do patients who have rights also become citizens who have responsibilities, particularly as we all—collectively—pay for each other’s health care?
• If the community has a right to call on health-care providers to keep us all productively at work and at school, do communities have a responsibility to do their share as well?
• As the population ages and more health-care costs are attributable to lifestyle, can we afford not to hold patients and communities more responsible for their own health-damaging, cost-increasing behaviors?

What will it take?  Will clinicians, payers and managed care groups be forced to sue patients and communities to get the debates going?

Consider hypertension. (more…)