The fact that health care reform has become the topic of the moment, and is clearly a defining issue for the Obama Administration, made it that much more intriguing to participate.

Room with a View

On the morning of July 16,   I joined more than 90 other determined constituents at the Reserve Officers Association on One Constitution Avenue in Washington D.C., which is steps from the Senate and a brief walk to the House offices: You know you’re in the thick of it when you can see the Capitol from the ladies room.

The group first congregated at tables according to our home states to mull the information packets and find out who we’d be meeting that day. I’m currently a registered voter in Massachusetts.  I ended up in a group that was composed mainly of employees from Genzyme Genetics – one of the few drug companies in the world that makes medicines to treat rare diseases.  Our itinerary included visits to the offices of Senator John Kerry, and Representatives Michael Capuano, Bill Delahunt, Edward J. Markey, and Niki Tsongas:  All are Democrats.

After a healthy breakfast, we got our marching orders from Andria Cornell, the Alliance’s uber organized Advocacy and Health Policy Coordinator, and some words of advice from CEO Sharon Terry.

“Share your story,” Terry urged us, “And just make three points in each meeting.”

It’s important to note that the Alliance isn’t asking for specific reforms, rather, they have carefully crafted a set of  “principles” they are asking legislators to “keep in mind” while considering any health care legislation.  Congress likes to write the legislation themselves when it comes to something as huge as health care, and with all the bills floating around it would probably be a waste of time to throw another one out there anyway.

The Genetic Alliance is an unusual type of organization. It is a network of about 10,000 health care groups, about 1,000 of which advocate for patients with specific diseases.  The group has about 150 million members in total, and provides a range of services (e.g. a biobank ) and many information resources on issues like fundraising, building a website, or education about genetics. About 25 million of its members are Americans who have a genetic disease or their family members. They are passionate, deeply invested, and highly opinionated about what kinds of fixing the health care system needs.

To craft their principles, a month earlier the Alliance had joined with several other health care groups and convened an “urgent meeting” on health care reform.  BIO (Biotechnology Industry Organization), the Coalition for Affordable Health Coverage, the Coalition for 21st Century Medicine, FasterCures, Inspire, and Research!America, which co-led the event, were represented.  Ideas generated at the meeting were also widely shared through social networking, including a blog and Twitter @geneticalliance.

That group reached agreement about five major principles for health reform:

• Access: Create universal access to optimal care that provides an established benefit to individuals, families, and communities.
• Economics: Realign financial incentives to center on the health of people.
• Delivery Systems: Coordinate delivery across all spectrums of care.
• Patient Empowerment:  Create an individual sense of ownership and responsibility for health.
• Research to Care Continuum:  Link the research and healthcare systems and increase research focus on quality of life and health outcomes.

They see these principles as interconnected:  One bit of our broken health care system can’t be fixed without addressing the intersecting parts as well. “It is imperative that health reform be comprehensive, actionable, and sustainable; it must look at health as a continuum,” says Terry.  Unfortunately, nothing has yet emerged from Congress that looks like it really fits that bill, even the highly heralded, but widely disappointing, Baucus bill.   Still Terry is optimistic.  “Genetic Alliance is still hopeful that Senator Baucus will craft a bill that gets to the root of health reform, and not simply health insurance reform,” she says.

Glazed Looks and Vigorous Nods

During “Genetics Day on the Hill” the Massachusetts group visited our representatives’ offices, gave our opinions to their often surprisingly young legislative staffers, and then dropped off an information packet that offered many more details. We also invited our representatives to “use us as a resource” as they consider future legislation.

It was a lot of walking, getting lost, getting found, and a little bit of really good ice cream that a member of our group led us to in the basement of one of the Congressional office buildings.  Most of all, it was eye-opening.

One of the most important things I learned from this experience was the power individual stories have for politicians. Terry had repeatedly emphasized the importance of these, and she knew what she was talking about.  Legislators are hungry for true stories about problems their constituents face. When you give their staffers such stories, they usually pay attention and nod vigorously.  Massachusetts is one of the few states that has tried to reform the health care system, and so I talked about my experiences as a taxpayer dealing with that.  It seemed especially pertinent since the Obama administration appears to be copying the Massachusetts plan.

It’s tempting to resort to logical arguments in these brisk sit down sessions, but the staffers have probably listened to and dissected every well worn political argument you can think of, particularly if its about health care reform.  Rehashing well-trodden ground drew glazed looks or polite smiles for them.

They seemed much more interested when I talked about the challenges I face as a Massachusetts resident: We are all obliged to buy health insurance that is some of the most expensive in the country because health care costs have kept rising even after the “reforms” were enacted here.

So, if you decide to do your own lobbying, get your story down first. We’re all voters, after all, and each of our stories has power. That’s why “Joe the plumber” almost became a defining moment of the 2008 election.

If you’re really passionate about health care reform, like most of us who attended “Genetics Day on the Hill,” it’s exhilarating to talk to someone who actually might do something about it.  One family brought their child, a pretty young girl with a rare genetic disease who was obviously facing serious health challenges.  Her parents wheeled her in a stroller through the halls of Congress. At the end of the day, their group reported that they were enthusiastically welcomed.  Those are doors that are now opened, however much, to further discussion.

After a rousing speech on health care reform by Congressman Patrick Kennedy (D-RI), we left clutching the business cards we’d collected during the day with our notes, preparing to follow up with our new contacts on Capitol Hill.

Everyone has a stake in how health care reform turns out, and so everyone really should try to understand the arguments and the proposed bills as well as we can. The Alliance does a great job of explaining what they think are the pivot points. Could you explain your position that well?

The study looked at more than 2000 patient visits from members of a Minnesota health plan that paid for patient visits to such clinics for more than five years.  They analyzed how retail clinic patients were treated for: ear infections, sore throats or urinary tract infections.  That information was then compared to data about patients treated for the same problems, but at doctors’ offices, ERs and urgent care centers.

“The costs of care in retail clinics were 30 to 40 percent lower than in physician offices and urgent care centers and 80 percent lower than in emergency departments,” the study found. Ouch.  That’s a lot of dollars.

Meanwhile, the quality scores retail clinics received: “Were equal to or higher than those of other care settings,” according to the study.

CVS, Walmart, and Walgreens are among the companies now running retail clinics.  These new “convenience” medical clinics have been attacked by medical associations around concerns that they might provide poor care.  Apparently, that worry isn’t supported by the data.

Because they are being watched so closely and judged, the staff at these clinics might even be especially cautious. That’s just a theory.

Having all your care at one spot is usually the best idea, as well as forging a good relationship with your doctor. But retail clinics seem offer a valuable option to people who can’t afford the ideal.

For more, see this Time story.

The site lists the more than 300 drugs, and the dosages, eligible for the “$4 Prescription plan.”  Higher dosages may cost more and prices may vary in some states.  Patients can also order other medications through the free mail order system.  Customers create an online account or drop into the pharmacy at a nearby Walmart to get their prescriptions filled. They can also call 1-800-2REFILL.

In a company press release, Dr. John Agwunobi, president of Walmart’s health and wellness division, is quoted as saying: “With this program, we’re able to provide consumers in every rural town or big city across America with more affordable prescription medicines through a convenient, free mail delivery system.”

This is just the kind of bargain people need more than ever.

CNNhealth.com has a just posted an article on “How to Prevent a Medical Bill Disaster.”

Some tips from that article, and a couple of my own:

• Don’t let your health insurance policy lapse if you can.
• If you are laid off this year, the U.S. government will pay 65% of your insurance tab if you keep the policy your got from your employer. Go here for details.
• Budget for health care.  Figure out what your costs are likely to be, and set that money aside.
• Read your health insurance policy carefully.  For more on that go here.
• Read up on your disability coverage too.
• Try to stay healthy.
• Appeal every claim that is denied by your insurance company.
• Negotiate if you get a huge bill. The article advises you “do this early.” I can’t emphasize that enough.  In fact, the best time to negotiate is before you actually get the service.
• In fact, I’ll add one more “tip” to their list:  Shop around.  Yes, call around and compare prices, you’ll be surprised at the deals you can get. Go to www.healthcarebluebook.com to see what the right price should be.

After all, some fish are literal depots for the bad chemicals we’ve been dumping in the oceans.  It’s a serious problem because  we also know that eating fish can be good for us. Since motherhood carries so many anxieties with it already, couldn’t we just get some peace over the eating fish thing?

KaBLOOM!  Your wish is answered.  Now there is a site that addresses this dilemma: Fish for Your Health.

State by state, Fish for Health lists the seafood-related advisories you need to be aware of.  It also tells you the nutritional benefits of particular fish, provides details about the specific contaminants that you need to be worried about, and to top it all off, there is a priceless video on how to clean fish.

The site was created by a group at Purdue University that does research on this very topic:  What should you tell pregnant and nursing women about how much and what seafood they should/can eat?

There is also a wallet card with key info that you can print out, or an iPhone application you can download.

Now, if you’re looking for recipes for cooking up that fish, try : LandBigFish,  FishRecipes, or if you want something on the lighter side: CookingLight20SuperFastFishRecipes.

It’s notable that the Administration is now referring to this as “health insurance” reform.  Health care reform was just too scary.

The website addresses topics such as:

• Your Medicare is safe, and stronger with reform
• You can keep your own insurance
• Reform will benefit small business, not hurt it

Of course, besides the rabid opposition of some outspoken opponents, the big challenge facing reform is how do we do it without bankrupting the country?  Like many experts, I don’t think that can happen with sacrifice from everyone, patients included.

Patients will need to be much more proactive and follow doctors’ orders.  Our bad health habits are part of what’s fueling the rising health care costs.  So, while the system definitely needs changes, we need to change too.

I’ve already said I think it’s good news.  Too few people realize that decisions at the end-of-life are often a trade off:  For a longer life, you can pay with a great deal of agony.  That’s a totally personal decision, but one you should discuss with your doctor and family to make sure your wishes are followed.

Apparently, all the accusations about death panels and euthanasia are at least bringing more attention to this question, as Kaiser Health News reports:  “Jon Radulovic, vice president for communications at the National Hospice and Palliative Care Organization, says the debate dispute “is providing the end-of-life care community with an opportunity to talk about what good care is and the services that are available.”

For anyone who is still wondering what this provision (section 1233) says, Kaiser also has a great piece describing the provision along with an excerpt.

Until now, they explain, there was no specific law stating that Medicare should reimburse doctors for end-of-life counseling. “Currently, physicians generally classify the conversations under a funding code covering counseling and discussion of issues such as marital problems and depression associated with a job loss…”

The new House bill  “requires Medicare reimburse doctors and other practitioners for consultations covering a range of information, including information about living wills and power of attorney.”

So, doctors have already been doing the counseling, and now it would just be eaiser to get paid for it and they’d probably make more money doing it.  Some people think that all life-saving procedures should always be done, but clearly others do not agree.  Once you sit down with a medical professional and go through a health care proxy or living will, you might be shocked at what would be in store for you if you don’t plan ahead.

The clinics, which are run out of Wallgreens, currently offer a lot of routine services at a very reasonable price, including treatment for minor injuries or illnesses, adult vaccinations, physical exams, and a range of diagnostic tests including those for pregnancy, tuberculosis, and flu.  You can even get a skin tag or a wart removed there.  All their services and some of the prices are listed here. 

The company says it has added nebulizer treatments in direct response to feedback and because respiratory diseases are so common.

Take Care’s staff already treat patients with bronchitis, asthma exacerbations or other respiratory illnesses.  “Offering nebulizer treatments at Take Care Clinics across the country provides our nationally certified clinicians another tool to ensure individuals and families can receive clinically appropriate care where and when it’s needed,” said Sandra Ryan, RN, MSN, CPNP, FAANP and chief nurse practitioner officer for Take Care Health Systems.

These clinics are a Godsend during such hard economic times.  If you’re paying your own health care bills, it’s hard to imagine where else you could get a physical exam for $60.

And, as I noted in an earlier post, Take Care clinics are also offering free health care to some jobless people.  You can find out if you qualify for the program at  www.takecarehealth.com, or by calling l 1-866-Take-Care (1-866-825-3227).

Funny, it’s not nearly as scary as people are making it sound.

She’s only up to page 150, so you’ll have to check back later if you want to read the whole bill.

That brings up one of the most common complaints about this bill, which is “Why rush it through?”

I’m not certain who planted that absurd idea in their heads, but it seems to be part of hysteria being whipped up by reform opponents. Too bad, because critics of the proposal such as Republican and House Minority Leader John Boehner are doing people a dreadful disservice by making them fearful of end-of-life counseling.

For one thing, Medicare already pays for this type of counseling. They just pay far too little for it.  So, is it better to have rushed end-of-life counseling or would you rather your doctor felt like this was something he or she could spend some time on?

My advice is spend as much time as you can. This is not about with-holding CPR just because you’re over 80.  It’s about telling your doctor whether or not you want to have a ventilator tube shoved down your throat if you are brain dead, or get knee surgery when you’re flat on your back dying of congestive heart disease.

It’s about deciding how much medicine is “enough” if someone is obviously dying.

Certainly, some people believe that life is so precious every conceivable effort should be made to protect it.  But unless you’ve worked in a hospital emergency room or ICU, you don’t have any idea of what could happen to you there. Technology has come a long long way, and the result can be very troubling.

That’s why people like physician and bioethicist Robert Martensen say it is crucial for anyone to at least have a living will: that says specifically which types of heroic measures you would like used to save your life and which you would not.  In this interview with NPR, Martensen points out that a doctor could spend one to two hours counseling a patient about all their alternatives during such a crisis.  Medicare, he says, pays $18 for that service in New York.

$18 dollars for some of the most important decisions that will ever be made about your life.  I think I’d vote “yes” to have them paid more than that.

In case you think everything that happens during the end-of-life is some kind of heroic measure aimed at making the patient more comfortable, or giving them another chance at life, think again. Sure, many amazing and wonderful things happen in ICU’s and emergency rooms.  We can all be greatful for the amazing work they do.  But there are also some unfortunate trends we need to be aware of as patients.

In his remarkable book “A Life Worth Living: A Doctor’s Reflections on Illness in a High-Tech Era,” Martensen points out that Medicare pays very well for for ventilators, which means hospitals make more money by putting patients on them. In fact, a whole new type of medical facility has sprung up just housing patients on ventilators, he says:  “So these places which are usually concrete buildings by freeways house patients on these ventilators. And I think for some families this is fine, this is a kind of medical sanctuary, for others it’s a living tomb. The point that troubles me the most is that there very seldom is a candid discussion with the family or the patient – if the patient is alert, usually is not – about this extended kind of space, twilight zone of existence.”

Ventilators, he adds are just one way that doctors have of “artificially” extending life.  Kidney’s not working? You get dialysis.  Heart not pumping right? Here’s a pacemaker.  Can’t swallow? Here’s a g-tube.  It’s can be lifesaving, but it is artificial and the more of it you get, the less comfortable you may feel. If you want all of it, fine go ahead and ask for it. But if you don’t want it, save yourself a heap of suffering and make out a living will.

I recommend you ask your own hospital for their living will form and then go through it with your own physician.  If you’re not satisfied with his or her explanations, try to find someone else who is a health care professional who can explain it to you. But familiarize yourself with what living wills are before you sit down with anyone, that will help a lot. And go over your living will with your doctor and loved ones at least every two years.  Technology moves fast.

You can find free living will forms on the web.  Here are a couple useful sites:

Health Care Decisions

Mayo Clinic on Living Wills