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?

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.

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

The House Energy and Commerce Committee finally voted and approved the health care reform bill that had been stalled as moderate democrats objected to some of it’s provisions, according to The Wall Street Journal.  The bill passed the Committee after moderate Democrats won a key amendment that will exempt more small businesses from having to provide coverage.

In the meantime, however, debate about the bill has “devolved” into the usual political battle about “villainous insurance companies versus inept government control of health care,” as Bob Laszewski describes it in a recent blog post.

He goes on to say that both Democrats and Republicans have been suggesting that we can do a big health care fix WITHOUT anyone making a big sacrifice, if we do it their way. But that’s not possible.  As a result, both sides are vulnerable to the same old criticisms they’ve been throwing at each others’ ideas for years.

What’s needed is a fresh and “apolitical” approach to health care reform.  Both Republicans and Democrats have good ideas about health care reform.  The system needs a radical shake up, not to be remodeled according to some political party’s agenda.

Many point to Massachusetts as the model for health reform, because the state has managed to get so many of its residents insured.  In Massachusetts, insurance companies cannot deny anyone coverage and every resident is expected to have insurance, either buying it for themselves or through state subsidies.  The idea behind these dual mandates, was that if everyone was insured, the cost of treating the uninsured would go down, because they would have proper care.  Unfortunately, health care costs have kept rising in Massachusetts, and are threatening to bankrupt the system.

Now, in a surprising move, a special commission has suggested that to keep the health care system afloat, the state needs to abandon the traditional “fee-for-service” method of paying doctors, hospitals, and other providers.  Instead, they would switch to “a system of global payments that combines the approaches of risk-adjusted capitation and pay for performance with a strong focus on primary care.”

Why is this such a critical change? Because “…fee-for-service medicine can be lucrative for providers because of financial incentives to deliver more (and more costly) services, it typically does not offer incentives to improve quality or efficiency or to deliver care that has a low profit margin, such as preventive services or patient education.”

It’s an age-old problem.  Primary care doctors are poorly rewarded, and not rewarded at all, for much of their work, but they are the ones who in the best position to help control costs. Meanwhile, specialists are rewarded for doing more and more, and not penalized for poor quality care.

Republicans and Democrats both know this. They also know that patients too must take more responsibility. The incentives also need to be in place for patients to care about their health and make wise health decisions.  Some employers are already seeing how this works.  Patients who participate in wellness programs can have their co-pays waived.  Hence, they get healthier and don’t have to pay for it.  Patients who smoke may have to pay higher insurance premiums. After all, smokers have a much higher risk of many conditions.

Democrats need to stop worrying about how to make healthcare “fair.”  Giving people free health care with no strings attached doesn’t make them healthier, it just means they get care.  Republicans need to stop worrying so much about market forces.  The health care market is a mess.  The incentives for everyone involved are twisted.  It’s unlikely that overnight we could turn this into a system that responds to market forces.

As Laszewski says in the comments section of his post, “[it] isn’t health care reform if we don’t use reform to actually decrease the deficit and stop the trajectory toward 22% of GDP.’”

The broader bill calls for a new public insurance plan that would compete with private insurers, in an effort to expand insurance coverage. The bill requires all but the smallest companies to provide workers with coverage or contribute as much as 8% of their payroll toward helping them buy it. The Energy and Commerce Committee doesn’t have jurisdiction over taxes, but companion House legislation would raise more than $500 billion by levying a new surtax on the wealthy.

Most people aren’t aware of that this is taking place, however, because they aren’t paying the medical bills themselves.  Instead, they are getting lower wages because their employer is paying more for their health insurance. They may also be paying higher taxes, and getting less overall services for those taxes, to pay for Medicare and Medicaid.

The graph and table below tell the story.  The authors (Polsky and Grande) conclude “Our analysis underscores the need to take decisive action to slow this growth if we are to realize the goal of affordable health care for all Americans.”

In an essay in The Wall Street Journal, he writes:  “Before we are irretrievably sucked into Washington’s political maneuvering, we desperately need doctors and nurses to speak for the art of medicine.  As William Osler, the father and spokesperson of modern medicine said a century ago: You are in this profession as a calling, not as a business; as a calling which exacts from you at every turn self-sacrifice, devotion, love and tenderness to your fellow-men. Once you get down to a purely business level, your influence is gone and the true light of your life is dimmed. You must work in the missionary sprit with a breadth of charity that raises you far above the petty jealousies of life.”

Verghese adds that: “Physicians like those should speak up for medicine, and argue in favor of paying doctors to spend time with their patients. They should fight against a payment system that has created perverse incentives that encourage unnecessary treatments. Let’s make it as lucrative to talk to the patient as it is to do to the patient.”

Obama, Verghese argues, is sounding more like a doctor than many of the people who call themselves physicians who are are arguing against reform.

It’s inspiring stuff. Hope we will hear more like it.

According to WSJ, President Obama said great progress has been made toward achieving reform, including bringing key stakeholders on board.  But now the job must be finished.

The President said that under the proposed legislation, Americans could keep their current doctors if they wished, and there would be renewed emphasis on electronic health records and prevention.  He added that incentives would be adjusted to reward quality care rather than expensive care, “which drives up your costs but doesn’t make you better.”

Why pursue health care now, in the midst of an economic crisis?  President Obama explained that the country’s current education and health care systems weaken the economy, and that government spending on Medicaid and Medicare could one day outstrip spending on everything else, combined.

Laszewski is the author of the Health Care Police and Marketplace Review blog and President of Health Policy and Strategy Associates. His formula for reform rests on one radical proposal:  “Any network of insurers and providers who did not collaborate toward making the system affordable would lose their tax qualification—their plans would no longer be tax deductible for employers and consumer.”

It’s a novel and eye-catching approach.  True, regulations often only lead to regulation evasion, but I think Laszewski has the right idea:  Focus first on fixing the incentives.  Only when the system rewards for quality and appropriate care will we be in a position to really work towards making health care anything close to universal.

I would love to see what would happen in Washington if Laszewski’s proposal made any headway.  Right now, Congress is still under the illusion that changing the health care system is optional, and that they can fix things without annoying some of their favorite lobbies, such as the medical societies and the insurance companies.

Just look at the unemployment statistics, and watch as health care costs keep rising, and huge numbers of people are priced completely out of the market.  Either Congress hears what President Obama is saying, and acts to make radical and meaningful change in this out-of-control system, or we will all end up paying, literally.  After all, as we’ve been told time and time again, it’s those with insurance who pay for the health care of those who can’t.  As the number of unemployed rises, fewer of us will be able to afford health insurance, whether Congress mandates that we buy it or not.  It’s a vicious cycle and it’s stupid to let it spiral out of control at a time of such economic uncertainty for so many.

When I hear conservatives go on about letting the market work in health care or liberals start carping about the joys of a single-payer system, they seem tragically out-of-touch with the times.  There is an economic crisis of massive proportions going on.  Health care costs are still rising.  Either something substantial is done to make health care better, less wasteful, and more affordable, or private health care will become a luxury item that only a privileged few can afford. This is not a matter of of politics or philosophy, it’s about efficiency and standards.  If we keep “the present arrangement, as George Newman suggests in his recent Wall Street Journal editorial, millions more people will be forced onto Medicaid, and millions of others will be struggling to pay high fees for health insurance policies that don’t even cover much of the care they need.

It’s a potential disaster for the country and demands the type of courageous “out-of-the-box” thinking that Laszewski, at least, is doing.