My Day on Capitol Hill: An MS Activist in Action

Wednesday was the big day! MS activists from around the country visited countless offices on Capitol Hill to voice their support of specific legislative issues needed to improve the lives of people affected by multiple sclerosis. Requests made to lawmakers this year on behalf of people with MS nationwide included:

• Support the Lifespan Respite Care Program: 
• reauthorize the program by passing H.R. 3266 and 
• include $5 million in the FY2013 Labor-HHS-Education appropriations bill for the program.
• Support MS Research: 
• provide $32 billion in FY2013 for National Institutes of Health and
• sign Dear Colleague Letter or make programmatic request for additional appropriations (money) for the MS Research Program (MSRP) under the Congressionally Directed Medical Research Program. Last year the MSRP received $3.8 million.
• Join the Congressional MS Caucus: contact MS Caucus co-chairs Representatives Michael Burgess, MD (TX-26) and Russ Carnahan (MO-3) and Senators Robert Casey (PA) and Orrin Hatch (UT).
• Support MS Awareness Week Resolution: 
• co-sponsor the MS Awareness Week Resolution (H. Res. 560) and
• contact Representative Barbara Lee (CA-9) and Senator Bob Casey (PA) to voice your support.

Todd Adams, Legislative Director to U.S. Representative James R. Langevin (RI-2) and the Society’s 2011 Congressional Staffer of the Year, made the following suggestions in preparation for our visits:

• Regardless of whom you meet in the office, establish a connection. Tell them your story.
• Make it known if you are a constituent.
• Clearly present your “ask.” What do you want the congressman to do or support? Explain what it will mean down the road to you and others. Leave behind materials detailing your request.
• Be mindful of time.
• Exchange information so that the office can contact you.
• FOLLOW UP!! Possible questions to ask: “Did you have an opportunity to look over our priorities? Did you have any questions? Did your boss sign off on our request? Was he OK with it?”
• Most importantly, HAVE FUN!!

My day began as MS activists from Virginia loaded the first bus leaving the hotel. Dropped off in front of the Capitol Building, I went with Dana and Phil, fellow MS activists, to visit the office of James Moran (VA-8), our U.S. Representative. We met with Moran’s Legislative Assistant, Marcia Knutson. Tip: Allow at least one hour to enter the office buildings in the morning. 

Dana and Phil have an ongoing relationship with Ms. Knutson, and Rep. James Moran is generally supportive of healthcare issues, so not much time was spent discussing the requests. Knutson wanted to know the bill numbers and specific dollar amounts being requested, as she wrote in her notebook. From there, the conversation traveled between various topics and I picked up on a few additional details which may be important to keep in mind when contacting your own lawmaker’s office.

• Although email communication is increasingly becoming more common, take the time to visit the office. An in-person visit to educate the Legislative Assistant on an issue, especially one with which he/she is unfamiliar, is highly preferable.
• If you send a blanket form letter to 300+ offices, most of which do not house your personal representative or senator, don’t expect it to be taken as seriously.
• Don’t just ask for “more money” in your request. Be prepared with specific dollar amounts.
• Know your lawmaker’s deadlines for Budget Hearings. Rep. Moran’s deadline for submitting materials in preparation for a March 28th or 29th hearing is March 20. As the legislative assistant must prepare materials in advance of this deadline, groups meeting with Ms. Knutson with budget requests after March 13 will be left out of consideration.
• Unfortunately, if you choose to send a letter to your Senator or Representative, it will face up to a 6-week delay because of the rigorous security screening process in place – email is preferable. And if you don’t hear back from the office after an email, call to be sure they received it – Spam filters in Congress sometimes divert email messages.

Before we left Rep. Moran’s office, I was able to jump into the conversation and express my personal concerns as a self-employed person who has an individual health insurance policy. As a “grandfathered” policy, it does not need to match the same requirements incorporated into new policies being offered by the same company. Ultimately I was asked if I could hold out until 2014 when health exchanges will be established in our area. I’m not positive that my concerns were entirely understood, which means that I need to follow up and continue the conversation. 

After going through this, I realized how easy it really was. A visit to a lawmaker’s office is just the beginning of a longer conversation. What you do afterward will determine how well your voice is heard and your concerns are understood. Each phone call is documented and emails are read. Every contact is important. Now is the time to keep MS-related issues at the frontline of Capitol Hill. 

Help keep the momentum going – follow the federal advocacy efforts on twitter at @MSActivist and after you’ve contacted your elected official or take some other action, tweet about it using hashtag #MSActivist.

Originally published on National MS Society blog.

Highlights from MS Public Policy Conference

Day One of the conference sped by so very quickly. Read about the opening afternoon sessions in my post - Washington from the Inside: The Political Climate and Multiple Sclerosis. Day Two is not yet complete, but you can catch up on a very important issue, the Lifespan Respite Care Act, in today's post - Family Caregivers, MS Research, and MS Champions. In just a few minutes, I'll head back down to the Ballroom to kick back and enjoy the comedy stylings of Brett Leake, a standup comic turned sit-down comic who lives with muscular dystrophy. My interviews with two inspiring MS activists will be posted tomorrow while we are all headed to The Hill.

Blogging from DC

I'll be blogging from the 21st Annual National MS Society Public Policy Conference in Washington, D.C.  I've been studying the agenda and am really exciting to be learning more about MS Research, the Caregiving and Lifespan Respite Act, and updates in healthcare reform which affect MS patients.

Read more at:

Demystifying Public Policy: MS Activists on the Frontline


In case you were thinking to yourself - Doesn't Lisa live near DC?
Yes, I do. However in the 13+ years I've lived here, I have not once visited my Representative's DC office downtown.  This will be a new experience.  Very excited!

"We Are All Patients," says Kim McAlister of Emergiblog

Continued from Part One, more discussion, prepared thoughts, and reactions from the bloggers in attendance at the event, "Putting Patients First" as hosted by Dr. Val, CEO of Better Health, LLC.

Dr. Wes posted his prepared opening comments of which these statements make me personally want to cheer - “The honest truth is, if I could help the uninsured, and unemployed and chronically ill while preserving my relationship with you – I would. If I could solve these problems while preserving my love for medicine – and the devotion of my colleagues, I would. Fortunately, I believe we can."

“But we can’t do that and continue to fund the gravy train. And that gravy train is the multi-billion dollar health insurance industry with executives who made over $24M annually in 2007, the $800B pharmaceutical industry with executive compensations of over 25 million dollars the same year, the over $24 billion spent in one year in our country on new hospital construction, the nearly half a billion dollars in political campaign contributions from health care special interests a single year (2008), and the 55-80% increase in malpractice insurance premiums that your doctors have paid over the past 5 years.”

...A final member of the Twitter Gallery was Kerri Morrone Sparling of "Six Until Me" whose round-up goes directly to the heart of the discussion: Government Health Care. Her readers provide excellent commentary on the issue, especially those who have lived in the US and elsewhere.

Kim of "Emergiblog", never shy to say she is definitely NOT for a single-player plan run by the government, ended her summary making an excellent point - “I’ll say one thing: no matter what we believe, why we believe it or what our role is in the health care system, it is a conversation rife with strong opinions and passionate debate. And, in the end, because we are all patients in one form or another at some point in our lives, the conversation is about us. So, when you hear the phrase ‘putting patients first,’ think of it as ‘putting me first.’ That may help you get a foothold in the morass of information that is the health care debate. It worked for me.”

Finally, from one Canadian I respect comes - “Yes America! I Like My Healthcare.”

Please read and consider answering the questions posed at the end of this article regarding your health care.

Read this post in its entirety:

Health Care Reform: Putting Patients First, Part Two

"Ultimately Not About Health Care" says Congressman Paul Ryan

Health care reform is divisive dinner conversation here in the Nation’s Capitol. Ok, maybe not at everyone’s dinner table, but it is a very hot topic lately. On July 17, 2009, I attended an event hosted by Dr. Val Jones, CEO of Better Health, LLC, titled - “Healthcare Reform: Putting Patients First” - at the National Press Club in Washington, D.C.

As was noted in the larger medical blogosphere, there were no patient bloggers invited to participate on the medblogger panels. In response to the minor uproar, Dr. Val commented, “The spirit of the conference is about expressing the need to preserve the patients’ right to choose (along with their providers’ advice and input) the best path for their care. It was never my intention to exclude patients from the conference in any way – patients and physicians/nurses are each others best allies, and we need to stick together!”

Ok, with that out of the way, let’s talk about what was discussed during the conference.

The keynote speaker was Congressman Paul Ryan (R-Wisconsin) who started with - “This event is a landmark in how we get discussion and debate going in the 21st century. We are communicating with the grass roots, with medical bloggers here in this room and across the country.

“Let me tell you this: I don’t want government interfering in the relationship between doctors and patients…and I don’t want insurance companies interfering either! I want a vibrant health care market that lets patients choose the health care options that are right for them and their loved ones. I want a free market democracy that puts patients first. We can have this, and I’ll say something more about that in a minute.”

The majority of Ryan’s speech (transcript available) was dedicated to demonizing the role of government in healthcare reform solutions and the Democratic bill recently introduced in the House and supported by President Obama. Ryan finally said this out loud, “The fact is, this is ultimately not about health care but about promoting an ideological objective.”

“Not About Health Care” - That’s a frightening admission, but spoken from someone who has access to excellent coverage and care. For more on Ryan’s speech, read Duncan Cross’ commentary.

Read this post in its entirety:

Healthcare Reform: Putting Patients First, Part One

MS: The Economic and Public Policy View

Multiple Sclerosis is an expensive disease, both in monetary measures and in quality of life measures. Not just the exorbitant costs of the disease-modifying treatments, but the indirect costs from lost productivity, the costs of informal care, and the costs associated with a diminished quality of life.

Has your neurologist ever said to you - “this is the best time to have MS.”
What?! Is he or she crazy? Why would I chose ANY time to have MS?

Not too many years ago, there was very little neurologists could do to help their MS patients. If you had an exacerbation, you underwent high-dose steroids or plasmapheresis. If you had symptoms, you tried something to help relieve them.

Doesn’t sound that much different than the present. The difference is, however, that we have several disease-modifying treatments which have been developed to delay the progression of the disease and hopefully prevent some of the permanent disability.

Alone, the drugs exhibit a tangible cost to the payer (ie. insurance company, government agency, or the patient himself). Then consider the cost of medical care and rehabilitation, the indirect cost of extra care provided by family and friends, and the intangible cost of diminished quality of life.

The challenge, then, becomes in demonstrating the cost-effectiveness of intervention. By preventing temporary disability resulting from relapses (now) and permanent disability from slowing disease progression (later), the main economic benefit (to the payer) is in future cost-savings generated by less disability which lead to maintaining a higher HRQOL.

For a discussion of the Overall Costs for MS patients in the United States, read the following study which was conducted in 2004. Although the numbers are outdated, the methodology and theory behind the analysis remains true. See Kobelt G, Berg J, et al. Costs and Quality of Life in Multiple Sclerosis: A Cross-Sectional Study in the USA. SSE/EFI Working Paper Series in Economics and Finance No 594, December 2004.

Read this post in its entirety:

Quality of Life for MS Patients: The Economic and Public Policy View (Part Five in Series)

Our Health Care System - 5 Myths

An interesting Health Policy Op-Ed in today's Washington Post.
What is your opinion on the myths and possible solutions?

5 Myths About Our Ailing Health-Care System

By Shannon Brownlee and Ezekiel Emanuel
Sunday, November 23, 2008; B03

With Congress ready to spend $700 billion to prop up the U.S. economy, enacting health-care reform may seem about as likely as the Dow hitting 10,000 again before the end of the year. But it may be more doable than you think, provided we dispel a few myths about how health care works and how much reform Americans are willing to stomach.

1. America has the best health care in the world.

Let's bury this one once and for all. The United States is No. 1 in only one sense: the amount we shell out for health care. We have the most expensive system in the world per capita, but we lag behind many developed countries on virtually every health statistic you can name. Life expectancy at birth? We rank near the bottom of countries in the Organization for Economic Cooperation and Development, just ahead of Cuba and way behind Japan, France, Italy, Sweden and Canada, countries whose governments (gasp!) pay for the lion's share of health care. Infant mortality in the United States is 6.8 per 1,000 births, more than twice as high as in Japan, Norway and Sweden and worse than in Poland and Hungary. We're doing a better job than most on reducing smoking rates, but our obesity epidemic is out of control, our death rate from prostate cancer is only slightly lower than the United Kingdom's, and in at least one study, American heart attack patients did no better than Swedish patients, even though the Americans got twice as many high-tech treatments.

Moreover, the quality of health care is different in different parts of the country. The Centers for Medicare and Medicaid Services have issued a list of 26 measures of quality, such as making sure that heart-attack patients being discharged from the hospital get a prescription for a beta blocker or aspirin to help reduce the risk of a second attack. It turns out that quality is all over the map, and it isn't necessarily better in the places we might expect, such as academic medical centers. Worse still, according to the Congressional Budget Office (CBO), there appears to be no connection between how much Medicare and other payers spend on patients in different parts of the country and the quality of the care the patients receive. You are no more likely to get that beta blocker or aspirin in Los Angeles than in Portland, even though Medicare spends twice as much per beneficiary in Los Angeles.

2. Somebody else is paying for your health insurance.

Nope. Even when your employer offers coverage, he isn't reaching into his own pocket to cover you and your fellow employees; he's reaching into your pocket, paying you lower wages than he would if he didn't have to pay for your health insurance.

Rising health-care costs are partly to blame for stagnant wages. Over the past five years, health insurance premiums have risen 5.5 times faster on average than inflation, 2.3 times faster than business income and four times faster than workers' earnings. Four times. That's why wages have been nearly flat since the 1980s, even as U.S. productivity has been going up. In effect, about half the money you should be earning for being more productive is being sucked up by ever more expensive health-insurance premiums.

If you pay taxes, you're also paying for the health care provided through state and federal programs such as Medicare, Medicaid, the Veterans Administration and the military. All told, the average family of four is coughing up $29,000 a year for health care through taxes, lower wages and out-of-pocket medical expenses.

3. We would save a lot if we could cut the administrative waste of private insurance.

The idea that we could wring billions of dollars in savings this way is seductive, but it wouldn't really accomplish that much. For one thing, some administrative costs are not only necessary but beneficial. Following heart-attack or cancer patients to see which interventions work best is an administrative cost, but it's also invaluable if you want to improve care. Tracking the rate of heart attacks from drugs such as Avandia is key to ensuring safe pharmaceuticals.

Let's just say that we could wave a magic wand and cut private insurers' overhead by half, to what the Canadian government spends on administering its health-care system -- 15 percent. How much would we save? Not as much as you may think. Private insurers pay a little more than a third of what we spend on health care, which means that we'd cut a little more than 5 percent from our total budget, or about $124 billion. That's not peanuts, but it's not even enough to cover everybody who's currently uninsured.

More to the point, we only get to save it once. That's because administrative waste isn't what's driving health-care costs up faster than inflation. Most of the relentless rise can be attributed to the expansion of hospitals and other health-care sectors and the rapid adoption of expensive new technologies -- new drugs, devices, tests and procedures. Unfortunately, only a fraction of all that new stuff offers dramatically better outcomes. If we're worried about costs, we have to ask whether a $55,000 drug that prolongs the lives of lung cancer patients for an average of a few weeks is really worth it. Unless we find a cure for our addiction to the new but not necessarily improved, our national medical bill will continue to skyrocket, regardless of how efficient insurance companies become.

4. Health-care reform is going to cost a bundle.

Only if you think that covering the uninsured is our only priority. Yes, making health care available to all citizens is the right thing to do. But it isn't the only thing to do. We also have to fix the spectacularly wasteful and expensive way doctors and hospitals deliver care.

Our physicians are working within a truly dysfunctional, often chaotic system that prevents them from caring for us properly. Between 50,000 and 100,000 patients die each year from preventable medical errors. According to the Centers for Disease Control, 1.7 million Americans acquire an infection while in the hospital and nearly 100,000 of them die from it. Laboratory imaging tests are routinely repeated because the originals can't be found. Patients with such chronic illnesses as heart failure and diabetes land in the hospital because their physicians fail to monitor their condition. When patients have multiple doctors, there's often nobody keeping track of the different medications, tests and treatments each one prescribes.

Our doctors and hospitals are failing to provide us with care we need while delivering a staggering amount that we don't need. Current estimates suggest that as much as 20 to 30 percent of what we spend, or about $500 billion, goes toward useless, potentially harmful care.

There are two bright spots. One: We can improve the quality of care and cut costs without rationing. There are models out there for how to do it right -- the Mayo Clinic, the Geisinger Clinic in Pennsylvania, the Cleveland Clinic and California's Kaiser Permanente are just a few of the organized group practices that are doing a better job for less. Their doctors are better than average at using the best medical evidence available. They're more likely to be using electronic medical records, which can help keep track of patients who have multiple physicians and need complex care. And they're less likely to provide unnecessary care.

Two: Even moderate reform of the delivery system would improve care and save money. The Lewin Group's analysis shows that a bill proposed by Sen. Ron Wyden, an Oregon Democrat, calling for a more comprehensive overhaul of the health-care system than either McCain's plan or Obama's could actually insure everyone and save $1.4 trillion over 10 years. More reform is cheaper.

5. Americans aren't ready for a major overhaul of the health-care system.

We may be readier than you think. A recent study published in the New England Journal of Medicine found that only 7 percent of Americans rate our health-care system excellent. Nearly 40 percent consider it poor. A whopping 70 percent believe it needs major changes, if not a complete overhaul.

Now is not the time to think small, to cover a few million Americans and leave the bigger job of controlling costs and improving quality for another day. We can't afford not to reform the delivery system as soon as possible. At 17 percent of gross domestic product, health care is the biggest single sector of the economy, and it's consuming a larger and larger proportion every year. According to CBO projections, health care will account for 25 percent of GDP by 2025 and 49 percent by 2082. That's simply unsustainable. Any plan that reforms health care has to do more than simply cover the uninsured. The nation's health and wealth depend on it.

brownlee@newamerica.net

Shannon Brownlee, a visiting scholar at the National Institutes of Health Clinical Center, is the author of "Overtreated." Ezekiel Emanuel, an oncologist and author of "Healthcare, Guaranteed," is chairman of the center's Department of Bioethics. The views expressed here are the authors' own.

Speak Up!! Make Your Voice Heard!!

From October 27, 2008 through November 3, 2008, you have a unique opportunity to make your voice heard on health information privacy issues, their impact on the Health 2.0 movement, and how best to build public trust in these technologies.  (hat tip to: The Health Care Blog)

They are seeking to gather feedback from the public on the important privacy issues that confront all of us as we promote the movement to e-health. A report will be generated based on the responses, so it is important that a broad range of stakeholders participate. Go to www.thenationaldialogue.org to find out more and to log on!


About The National Dialogue:

In late October, just before a critical presidential election, citizens and stakeholders around the nation will join a unique experiment in 21st century democracy. The National Academy of Public Administration, on behalf of the Federal CIO Council, the Office of Management and Budget, and the General Services Administration, will host an online national dialogue that demonstrates a fundamentally different approach to the work of government.

This national discussion will engage a diverse group of voices in tackling one of the key issues confronting the nation's health care system: How can we use information technology to improve the way patients interact with the healthcare system, while safeguarding their right to privacy? Participants will have an opportunity to discuss challenges, generate breakthrough ideas, and recommend principles that will be presented to the next Administration.

How can I participate in the National Discussion?
The National Discussion is open to everyone. It's easy to submit and rank ideas. To learn more, please read our tutorial on using this site.

How will my participation in the National Discussion make a difference?
The National Discussion will produce concrete, actionable suggestions for government leaders. A panel of Fellows from the National Academy of Public Administration will distill the results of this dialogue into a report that captures “citizen-centric” recommendations. The report will be presented to the transition team for the new Administration, as well as OMB, the United States General Services Administration, the Federal CIO Council, and other relevant Federal agencies.

Who is hosting the National Discussion?
The National Discussion on Health Information Technology and Privacy is being hosted by the National Academy of Public Administration, in partnership with AmericaSpeaks and Delib. Established in 1967 and chartered by Congress, the National Academy is a non-profit, non-partisan coalition of top public management and organizational leaders who tackle the nation's most critical and complex challenges. As the home of The Collaboration Project, the National Academy is uniquely positioned to host this discussion. We are proud to be working in partnership with AmericaSpeaks and Delib, non-partisan experts in online and face-to-face citizen engagement and public deliberation.

For more information, contact the National Academy of Public Administration info@thenationaldialogue.org

I'm going to speak up, will you join me?

Health Engagement and Social Marketing

This morning I discovered The Health Engagement Blog whose motto is "Advancing health relationships, marketing and communications" and brought online by Edelman which is a big player in corporate public relations and communications.  This is what they are about:

Welcome to our blog. Our aim is to foster conversation about the increasing importance of Health Engagement and explore its implications and imperatives for communicators. We believe that for companies, brands, and organizations in health to succeed, they must develop an intimate understanding of stakeholders and the issues that matter to them, communicate and converse with them through the channels they use, and build their trust through authenticity and shared purpose. This is Health Engagement.

Each of the voices on this blog has his or her own point of view about Health Engagement, based on professional background and experience, research, and personal relationships – but none of us has all the answers. Here are some questions we invite you to join us in exploring: How do you see the public's preferences for engagement with companies and brands changing? From your perspective, what are the emerging health issues of top concern? How well are health companies, brands and organizations trusted? What influences this?

We encourage you to shape and deepen the dialogue by sharing your experiences and viewpoints on the highly personal, fundamental issue of health. We look forward to exchanging ideas. 

From The Health Engagement Blog, I perused their blogroll and discovered the following (only excerpts provided below):

Information Rx for Healthy People in 2020 from On Social Marketing and Social Change Blog

Harnessing the power of information democratization requires us to identify the challenges and find appropriate solutions.

• “Availability” does not necessarily equate with “access.” Just because the information I need exists somewhere doesn’t necessarily mean that I can find it. Navigation to information targeted to the appropriate moment in care is critically important. We need to translate widespread availability of information into true, ubiquitous, and timely access - something that’s feasible by linking data sources with high-quality health content.
• “Data” is not the same as “information,” which is different from “knowledge,” which is not equal to “behavior.” In order to go up the chain from data all the way to the behavior change needed for positive health outcomes, we need to connect accessible data with science—such as evidence-based medicine, decision sciences, predictive modeling, and behavior change science.
• For some people, the free access to information has led to a diagnosis of “information overdose” and a high signal-to-noise ratio. The appropriate Ix (or information therapy) means finding the right dose, frequency, and duration of information to proactively deliver, prescribe, or make available. We can do that by thinking creatively about how to target, tailor and contextualize health information for consumers’ individual learning styles, education levels, values, and preferences.

We can accomplish these three things by 2020 if we: develop clear definitions of what constitutes achievement of them; establish measurable objectives for what should be done; and align incentives to reward clinicians, systems, consumers, and others for achieving them. Those steps will allow us to create real improvement in health care delivery by translating information democratization into effective communication.

Health Communication and Informatics in Health People 2020 from On Social Marketing and Social Change Blog

In thinking about how health communication and informatics can inform the development and achievement of Healthy People 2020 goals and objectives, here are some illustrative examples drawn from progress in these fields over the past decade:

• Power of distributed networks for gathering, sharing, merging, mining and reporting health data
• Explosion in consumer-centric health communication strategies such as social marketing and advances in social media
• Rise and popularity of digital communities based on shared interests (social network sites)
• Advances in evidence-based health communication, marketing, and health literacy practices
• Advances in culturally-sensitive health communication
• Expansion of entertainment education
• Lessons learned from responding to public health crises

Healthy People 2020 can not only benefit from our work in these areas, but should also serve as a catalyst for their widespread use in addressing disease prevention and health promotion objectives across the board. One of the most important areas where HP2020 might focus is to promote the use of health communication and informatics interventions that are evidence-based, collaborative in nature, strategically designed, appropriate for the intended audiences, adaptive to changing situations, and consistent and reinforcing across multiple messages and channels. 

Healthy People should also support the adoption and expansion of health informatics across public health practice. In particular, HP2020 objectives can address electronic health records that collect, store and manage information; interoperable health information technologies; electronic patient management tools; population health technologies and interventions; tools to exchange data and support community care; disease surveillance technologies; telehealth systems to monitor and deliver remote care; patient/provider decision support tools; and health administration support tools.

And while the past decade has seen the emergence of a number of centers for health communication and informatics research across the country, the needs are far greater than the resources allocated to them so far. We need to continue to expand our knowledge base and test new strategies, models and tools. We then must translate and disseminate this knowledge and experience through relevant health information and best practices intended for at-risk audiences and other priority groups. Some of the priority research needs HP2020 should highlight include:

• Collaboration in health care and health promotion
• Informed and cooperative decision-making
• Understanding and responding to health risks
• Comforting communication and providing social support
• Media influences on lifestyles and norms
• Influences of technologies on health behavior
• Customized media/messages and behavior

If we incorporate health communication and informatics into HP2020 in ways such as I have outlined, we can offer much to improve the health of our nation. The challenge for our field will be living up to our promise.

Interesting stuff, especially since I'll be talking about this very thing strictly from a personal (non-professional) perspective tomorrow morning.  But the possibility of becoming a consultant or something is still always there.  Thinking, thinking........

Senate Hearing to Examine Specialty Drug Price Increases

The following meeting will discuss the 15-fold price increase of H.P. Acthar Gel (ACTH) by Questcor Pharmaceuticals as implemented in their Orphan-Drug-Style-Pricing-Model Strategy in August 2007.

I previously wrote about Questcor's new strategy (see tags on sidebar) as Acthar is indicated for the treatment of multiple sclerosis exacerbations, although the majority of MS patients use IV Solumedrol to hasten the recovery from periodic flairs. I have offered to summarize my research findings into a single post for one of the witnesses who will be speaking at the hearing.

So I've got some work to do.

SMALL MARKET DRUGS, BIG PRICE TAGS: ARE DRUG COMPANIES EXPLOITING PEOPLE WITH RARE DISEASES?

Americans Suffering From Rare Medical Conditions Also Burdened by Mounting Costs of Specialty Drugs as Pharmaceutical Companies Increase Prices Over Tenfold for Patients Undergoing Treatments for Serious Diseases Like Cancer and Epilepsy

Joint Economic Committee to Examine Sharp Price Increases for Expensive Specialized Drugs and the Impact on Consumers, Hospitals, and Care Providers

Washington, D.C. – U.S. Senator Amy Klobuchar (D-MN) will convene a hearing of the Joint Economic Committee (JEC) to examine the skyrocketing prices of certain prescription drugs and the impact on the pharmaceutical market, hospital’s budgets and patient’s medical bills. The hearing entitled, "Small Market Drugs, Big Price Tags: Are Drug Companies Exploiting People With Rare Diseases?" will be held Thursday, July 24 at 10am in Room 106 of the Dirksen Senate Office Building. Senator Charles E. Schumer, Chairman of the Joint Economic Committee, has been a staunch advocate of lower priced drugs and a competitive pricing market. The panel of experts will explore causes of recent price increases for treatments for rare diseases and the negative impact on affected families’ fiscal stability and access to care.

WHAT: Hearing: "Small Market Drugs, Big Price Tags: Are Drug Companies Exploiting People With Rare Diseases?"
WHO: Madeline Carpinelli, Institute for Pharmaceutical Research in Management and Economics at the University of Minnesota
Alan Goldbloom, CEO of Minnesota Children’s Hospital
Danielle Foltz, Parent of young patient from Rhode Island
(Additional witnesses may be added)
WHEN: 10 a.m., Thursday, July 24, 2008
WHERE: Dirksen Senate Office Building, Room 106

The Joint Economic Committee, established under the Employment Act of 1946, was created by Congress to review economic conditions and to analyze the effectiveness of economic policy.
www.jec.senate.gov

New Funding Source for MS Research

Unfortunately, Bush vetoed the FY 2008 Labor-HHS-Education Appropriations bill (H.R. 3043) on Tuesday. The president's action against the health and education funding was not surprising, as he had repeatedly vowed to veto the bill. But the result is still disappointing. This bill would have provided a 3.1% increase for the National Institutes of Health (NIH), including MS research, and a 6% increase for the Centers for Disease Control and Prevention (CDC).

In addition, Congress had incorporated nearly $4 million in funding in the bill for the development of a comprehensive MS center at West Virginia University in Morgantown, W.Va. And it included $2 million for state respite care grants authorized by the Lifespan Respite Care Act (which MS activists helped pass last year).

But here's some good news!

MS Activism Success — New Defense Funding Available for MS Research
(via MSActivist Blog)

For the first time ever, multiple sclerosis research will be eligible for funding under the Department of Defense (DoD). Congress has listed MS as a research area eligible for funding under the DoD's Peer Reviewed Medical Research Programs (PRMRP). PRMRP is a sister program to the Congressionally Directed Medical Research Program (CDMRP) under DoD that we've been working toward all year. This program has a budget of $50 million that can only be spent on research areas that Congress directs. It is a new and untapped funding source for MS research, and will complement the work that NIH is doing to move us closer to a world free of MS. The PRMRP was established in 1999 and continues to fulfill its Congressional intent by funding research of clear scientific merit with relevance to the health of the military and the American public. PRMRP Congressional appropriations have totaled $344.5 million through 2006 and funded 247 projects in more than 60 topic areas. While this program is not the exact line item we asked for, it is a significant gain in our effort to expand research funding for MS in the federal arena. The National MS Society continues to carefully watch emerging evidence from Veterans' Affairs researchers and others that might point to an increased risk of MS among combat veterans. More research must be conducted to better understand a potential environmental trigger. The Defense Appropriations (H.R. 3222) funding bill was signed by the President on November 13, 2007. As the program is implemented, we will let you know how researchers and others can apply for this funding. Thank you again for all your hard work and MS activism on this issue. We will need your voice again next year.

U.S. Representatives Leading the Congressional MS Caucus

Co-Chairs
Russ Carnahan (D-MO)
Michael Burgess (R-TX)

Members (as of 11/13/07)
Neil Abercrombie (D-HI)
Tom Allen (D-ME)
Tammy Baldwin (D-WI)
Marion Berry (D- AR)
Brian Bilbray (R-CA)
Leonard Boswell (D-IA)
Lois Capps (D-CA)
Mike Castle (R-DE)
Wm. Lacy Clay (D-MO)
Tom Cole (R-OK)
Barbara Cubin (R-WY)
Susan Davis (D-CA)
Diana DeGette (D-CO)
Lloyd Doggett (D-TX)
Keith Ellison (D-MN)
Bob Filner (D-CA)
Randy Forbes (R-VA)
Virgil Goode (R-VA)
Bart Gordon (D-TN)
Gene Green (D-TX)
Tim Holden (D-PA)
Darrell Issa (R-CA)
Marcy Kaptur (D-OH)
Patrick Kennedy (D-RI)
Peter King (R-NY)
Barbara Lee (D-CA)
Frank Lobiondo (R-NJ)
Zoe Lofgren (D-CA)
Edward Markey (D-MA)
Jim Marshall (D-GA)
Thaddeus McCotter (R-MI)
Jim McDermott (D-WA)
Jim McGovern (D-MA)
Cathy McMorris Rodgers (R-WA)
Michael Michaud (D-ME)
Dennis Moore (D-KS)
Tim Murphy (R-PA)
Grace Napolitano (D-CA)
James Oberstar (D-MN)
Donald Payne (D-NJ)
Collin Peterson (D-MN)
Chip Pickering (R-MS)
Todd Platts (R-PA)
David Price (D-NC)
Deborah Pryce (R-OH)
Adam Putnam (R-FL)
Dave Reichert (R-WA)
Rick Renzi (R-AZ)
Tom Reynolds (R-NY)
Steve Rothman (D-NJ)
Pete Sessions (R-TX)
John Shadegg (R-AZ)
Christopher Shays (R-CT)
Adam Smith (D-WA)
Vic Snyder (D-AR)
Patrick Tiberi (R-OH)
Fred Upton (R-MI)
Henry Waxman (D-CA)
Peter Welch (D-VT)

(hattip and thanks to MSActivist Blog)

New Freedom Initiative -- Medicaid, Employment, and Affordable Housing for Disabled Persons

As I continue to learn about the economics of health policy and the politics of entitlement programs, I contemplate the intersection and disconnect of various safety-net and hand-up programs.

On February 1, 2001, President Bush announced the New Freedom Initiative - a comprehensive program to promote the full participation of people with disabilities in all areas of society... On July 27, 2007, the White House released the 2007 Progress Report on the New Freedom Initiative which is President George W. Bush's plan to tear down barriers to full integration into American life that remain for many of the 54 million Americans with disabilities.


As part of the New Freedom Initiative, DisabilityInfo.gov, a federal one-stop online resource and collaborative effort among twenty-two federal agencies, connects people with disabilities to the information and resources they need to actively participate in the workforce and in their communities. While perusing the website, I found the legislative foundation of Virginia's Medicaid Works program I discussed previously.

Enacted on December 17, 1999, the Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA) includes several incentives and opportunities for successful work experiences for people who receive Social Security disability benefits who want to go to work. This landmark legislation modernizes the employment services system for people with disabilities and makes it possible for millions of Americans with disabilities to no longer have to choose between taking a job and having health care.

The Virginia Work Incentive (WIN) program, Medicaid Works, is a Medicaid Buy-In program available to disabled enrollees, under 65, who are employed or wish to be employed. To qualify for Medicaid Coverage, an individual's income must be below 80% Federal Poverty Level (FPL) which equates to $8168 for an individual in 2007 and $10,952 for a couple. Initial eligibility also requires the applicant to have resources limited to $2000 for individual or $3000 for couple.

Continued participation in Medicaid Works requires that all earned income be deposited into a WIN account, maintaining $2000 minimum balance. Any amounts deposited into IRS-approved accounts do not count against resource limits and will not affect continued eligibility. Examples of IRS-approved accounts include IRA, MSA, MRA, education accounts or independence accounts.

According to the Medicaid Works Handbook, the Virginia program allows the disabled Medicaid recipient to earn income up to $40,905 and to accumulate resources up to $27,577 which far exceed general Medicaid limits. Following are the Principles for Development of the Medicaid Buy-In Program in Virginia. Consider carefully the bold statements [my emphasis].

1. To remove barriers to employment in order to allow Virginians with disabilities to maximize their potential for personal growth and independence.

• Persons with disabilities should have the option and opportunity to work and boost their self-sufficiency. Fear of losing health insurance coverage has been identified as a barrier to employment for individuals with disabilities. No one should have to choose between going to work and having health insurance coverage, nor should taking a job put you at greater financial risk than remaining unemployed.

2. To provide opportunities for persons with disabilities to increase their financial security and independence by accumulating assets.

• Enable individuals with disabilities to increase their financial independence through accumulated assets that make it possible for them to respond to short term emergencies, to save for retirement or for their families’ needs. It is important for all Virginians to have the opportunity to participate in the American dream. People with disabilities who go to work should have the opportunity to save and plan for the future just like everyone else.

3. To promote a coordinated and integrated program/process that positively impacts the workforce and the community, and assures the consumer that no harm will result from participation in the program.

• Keep the program simple and easy to understand. Enable a smooth transition both to and from the program, including safeguards to ensure participants who acquire resources/savings (e.g., increased resource limits) will not adversely impact their eligibility for Medicaid in the event their employment ends. The Buy-In will encourage people with disabilities to enter the competitive workforce, thus, expanding the labor pool for employers with willing, capable individuals who will work hard, pay taxes, and be further engaged in community life.

4. To encourage and support Virginians with disabilities who engage in gainful employment in a competitive environment.

• Provide individuals with the opportunity to retain vitally important health care coverage so that they may confidently participate in the workforce without fear of financial instability due to personal health care needs. However, the purpose of this program must include the expectation that buy-in participants are engaging in meaningful work with earnings that will help in meeting their financial needs as well. Virginia's Medicaid Buy-in should promote the idea that individuals with disabilities can compete in the workplace and earn sufficiently to gain a measure of true independence.

5. To create a fiscally responsible system that benefits Virginians with disabilities.

• It is important to ensure that Virginia’s MBI program is economically feasible. The Advisory Committee, and all partners in the development of our State’s program, should be thorough and examine all program options carefully, to ensure that Virginia does not experience unintended consequence (i.e., enrollment/costs that far exceed projections, or a program so restrictive that few people take advantage of it). Assist in developing a system that supports people in going to work, rather than one that merely expands Medicaid. The MBI Program should be a true “buy-in” for participants, wherein individuals will share in the cost of health care coverage, at a reasonable level that still makes it possible for them to provide for other needs.

I especially enjoy the ideology behind these statements although I do not fit the criteria to participate in Medicaid Works:

• It is important for all Virginians to have the opportunity to participate in the American dream.
• No one should have to choose between going to work and having health insurance coverage, nor should taking a job put you at greater financial risk than remaining unemployed.
• The MBI Program should be a true “buy-in” for participants, wherein individuals will share in the cost of health care coverage, at a reasonable level that still makes it possible for them to provide for other needs.

Although it is not the same thing, Bob Laszewski discusses a Medicare Buy-In program over at Health Care Policy and Marketplace Review.

For individuals and families with low- to moderate-income, home ownership is often the part of the American dream which remains a dream. After being denied the additional assistance I needed in 2006 for prescription medication, I looked into local programs designed to assist low- to moderate-income individuals in achieving home ownership. What I discovered was that I didn't earn enough income to qualify.

The City of Falls Church Housing and Human Services (HHS) Division establishes income limits for the Affordable Dwelling Unit (ADU) Program based on the U.S. Department of Housing and Urban Development (HUD) Area Median Income for the Northern Virginia/DC Metro Area. In 2007, the Median Family Income (MFI) in the Northern Virginia MSA is $94,500 for family of 4. $60,000 qualifies as low-income for a family of 4 and $42,000 for an individual according. HUD defines very low-income as 50% Median Income which becomes $33,100 for an individual and $47,250 for family of 4. The lowest range for HUD is 30% Median Income which is $19,850 for an individual and $28,350 for family of 4.

As of April 23, 2007, the City of Falls Church Affordable Housing Income Limits are $33,075 - $52,920 for an individual, $37,800 - $60,480 for family of 2, and $47,250 - $75,600 for family of 4. These numbers correlate to minimum income at 50% Median Income and maximum income at 80% Median Income. Current available Affordable Dwelling Units in Falls Church include seven 1-bedroom units at $98,229 each and eight 2-bedroom units at $136,168 each in the Pearson Square complex located less than 1/2 mile from where I live. Also available are three 1-bedroom units at $113,876 each and five 2-bedroom units at $146,412 each in the Spectrum at Falls Church complex only 1 mile away.

Now here's the irony. If I were declared disabled by Social Security Administration, I could take the risk of allowing my income to fall to $8168 while depleting personal savings to $2000 to qualify for participation in the Medicaid Works program. Then I could earn up to $40,905 (400% FPL or 61.7% MI), have Medicaid coverage, save for retirement and maintain personal savings of $27,577, and qualify to purchase an affordable housing unit within the community I live and work.

However, that is a risk I am not brave enough to take.

Health Affairs Summit in DC - Nov 1, 2007

Thanks to Joe Paduda for reminding us that the Health Affairs -- 2007 Health Policy Summit is taking place next Thursday at the Ronald Reagan Building and International Trade Center, Washington, D.C.

For those who may not know, I live inside "the DC Beltway" and although my interest in health policy is recent, I would love to attend. Not being a professional in health policy, is it possible to attend as a "fly on the wall"? Even if it were allowable for an individual to attend, the registration fees are beyond my budget.

Does anybody have any ideas?

Registration:
$950 - Standard Summit Registration
$500 - Nonprofit/Academic Summit Registration
$250 - Government Summit Registration

Please note: Registration for the Summit and Gala closes on October 25, 2007. There will be no onsite registration available.

Senator Sanders says "We Can Do Better Than This" and Bush says that Congress isn't listening to him

President Bush just completed one of his Thursday press conferences.

Near the end of the conference, he had not been asked about his SCHIP veto so he brought it up himself. This was after his mentioned that he is NOT part of the Legislative Branch, but that he can only URGE Congress to pass bills, which the Administration helps to design and approves. He referred to the many veto threats he proposed while Republicans were in control of Congress, but explained that they listened to his threats and decided to work with him. Bush touts the Medicare Modernization Act as an excellent example of the Administration's fulfillment of promises to improve benefits to Seniors. I have my own opinions on Medicare Part D and fail to see it as 100% effective in truly helping seniors with drug costs and access, but it has been beneficial for pharmaceutical companies.

Regarding SCHIP, he reiterated that stupid argument about six states who spend more on adults than children under SCHIP and the misleading argument regarding increasing coverage to those earning $83,000. Somebody really should have given him unbiased FACTS regarding how the program HELPS those who do truly need help!! He also mentioned the vast number of children who are covered by Medicaid (sorry I don't have the number on hand), but Medicaid coverage excludes children from SCHIP eligibility (at least in Virginia.)

What is utterly frustrating about the SCHIP veto is the apparent disregard by the Bush administration for the increasing struggles of lower-middle-class families in our current economy. If you are earning more than the median household income in your community, I imagine you are more financially equipped to make choices which reflect your sense of personal responsibility or personal enjoyment. You have more freedom of choice.

In a recent article in the Washington Post, Vote Nearing in Battle Over Kids' Health Care, Christopher Lee details the experience of one Maryland family who benefits from an SCHIP program and describes some of Bush's objections to the bill.

The president has repeatedly criticized the proposed expansion as an excessive governmental intrusion into health care that would siphon middle-class families away from private insurance. He favors a more limited $5 billion increase, for total funding of $30 billion over the period, although recently he said he might be willing to go higher. Bush believes the program should focus on serving children from families that earn less than twice the poverty level: $34,340 for a family of three and $41,300 for a family of four.

I live in Fairfax County, VA, where the median household income is $94,500 and the median income in the greater Washington, D.C., area is $78,978. If a family of four living in Fairfax County is earning $41,300, twice the poverty level, that family is surviving on an income which is 56% below the area's median income. Then complicate manners further regarding housing in the area. "The median new-home price in the region's largest jurisdiction [Fairfax County, VA] is $960,000, and the average monthly rent for a two-bedroom apartment is $1,306, according to county data." It would be reasonable to deduce that a family earning up to 400% FPL might be considered upper-middle-class in Shawnee, Oklahoma. But that same family living in Fairfax County would definitely rank towards the lower end of the income spectrum.

What is becoming more apparent is the disparity of wealth and poverty in this country. And policy which is limited to the needs of an extremely small range of families, those earning between 133% and 200% FPL, is very narrow indeed. And it seems to me that the most narrow policies are usually the least effective in achieving their stated purpose.

I agree with the several points put forth in Senator Sanders' article found on Huffington Post: "We Can Do Better Than This"

Let's be very clear. A vicious and premeditated class warfare is being waged today against the American middle class. Poverty is increasing and tens of millions are working longer hours for lower wages. Meanwhile, the richest people have not had it so good since the 1920s, and the gap between the very rich and everyone else is growing wider. For the first time in the modern history of our country it is likely that the younger generation will have a lower standard of living than their parents as the American Dream becomes an economic nightmare. The time is long overdue for members of Congress to look beyond the needs of their wealthy campaign contributors and begin addressing the issue of income and wealth disparity.

Today, disgracefully and despite all the rhetoric of "family values," the United States has, at 18 percent, the highest rate of childhood poverty of any major country. Since George Bush has been president, nearly 5 million more Americans have slipped into poverty, 8.6 million have lost their health insurance, 3 million have lost their pensions and median family income has declined by about $2,500. So much for the president's "compassionate conservatism."

And to try to be fair and balanced, I'll provide a link to an opposing view which was left in the comments section of the above article.

"Senator Sanders Lives in a Dream World" by Johnny Galt.

When should Tax Payers Pick Up the Tab?

Zagreus Ammon over at The Physician Executive asked me a good question after I commented on his post regarding the recent blogger SCHIP 'FOOD FIGHT' (my characterization).

He wanted to know my thoughts regarding taxpayer-subsidized health benefits. More specifically how I might propose to establish appropriate financial thresholds at which an individual (or family) would be required to sell assets (or spend down resources) to continue to be eligible for benefits from programs, such as Medicaid or SCHIP.

He thought that my experience with being ‘caught in the web of chronic disease’ and subsequent frustrations in navigating 'safety net' programs might afford me some greater insight. Well, let’s see.

A Primer on Medical Assistance in Virginia

FAMIS - Family Access to Medical Insurance Security (SCHIP)

• FAMIS Plus is Medicaid for Children. To qualify family income must be at or below 133% FPL (2007: $18,308 for family of 2, $27,465 for 4, $36,722 for 6). No resource evaluation is required.
• FAMIS is a state/federal program which provides low-cost health insurance for children in families whose income is 133% to 200% FPL (2007: $18,308-$27,308 for 2, $27,465-$41,300 for 4, $36,722-$55,220 for 6). The child must not have health insurance (some exceptions apply) and is not eligible for a state employee health insurance plan. No resource evaluation is required.
• FAMIS Select is a program which helps families pay for private or employer-sponsored health coverage. To be eligible, family must have at least one child enrolled in FAMIS. Families can choose between FAMIS or FAMIS Select benefits. The eligible family will receive up to $100 per enrolled child to help pay for family health insurance coverage, although a minimum employer premium contribution is required. The amount received from FAMIS Select can not exceed the family's share of coverage premiums. No resource evaluation is required.
• For pregnant women, Virginia has FAMIS MOMS program. To be eligible, income must be at or below 185% FPL (2007: $25,327 for you and unborn child) and you must not have access to a state employee health plan. No resource evaluation is required.

DMAS - Department of Medical Assistance Services (Medicaid)

• Full Medicaid Coverage is available to enrollees who are 65 or older, blind, or disabled as determined by SSA and have income at or below 80% FPL (2007: $8168 for 1, $10952 for couple). Or be an SSI enrollee with resources less than $4000 for individual or $6000 for couple.
• Limited Medicaid Coverage is available to enrollees eligible for Medicare Part A with resources less than $4000 for an individual or $6000 for couple. If income is below 100% FPL (2007: $10,210 for 1, $13,690 for couple), medicaid pays Medicare Part A & Part B premiums and all amounts for coinsurance and deductibles which medicare doesn’t pay. If income is less than 135% FPL (2007: $13,784 for 1, $18,482 for couple), medicaid pays Medicare Part B premiums. If disabled, working, with income less than 200% FPL (2007: $20,420 for 1, $27,380 for couple), medicaid pays Medicare Part A premiums.
• If income is below 135% FPL, you may be eligible to receive a Medicare Part D Subsidy. For full subsidy, resources must not exceed $6000 for individual or $9000 for couple. For partial subsidy, resources must not exceed $10,000 or $20,000 respectively.
• A Work Incentive (WIN) program, called Medicaid Works, is available to disabled enrollees, under 65, who are employed or wish to be employed. Initial eligibility requires income below 80% FPL and resources limited to $2000 for individual or $3000 for couple. Continued participation requires that all earned income must be deposited into a WIN account, maintaining $2000 minimum balance. This program allows the disabled Medicaid recipient to earn income up to $40,905 and to accumulate resources up to $27,577. Any amounts deposited into IRS-approved accounts do not count against resource limits and will not affect continued eligibility. Examples of IRS-approved accounts include IRA, MSA, MRA, education accounts or independence accounts.
• If the Medicaid Works enrollee is unable to continue working, he may switch to traditional Medicaid. Resources accumulated in WIN accounts will not count against current eligibility and the enrollee will have one year to dispose of excess funds before impacting continued eligibility. Resources accumulated in IRS-approved accounts will not count against current or future eligibility.
• Health Insurance Premiums Payment (HIPP) Program is a Medicaid program which reimburses some or all of an enrollee's share of employer-sponsored group health insurance premiums when it is determined to be more cost-effective to do so.

Useful Definitions:

• Income includes earned income, such as wages, and unearned income, such as Social Security, retirement benefits, veteran's benefits, child support, etc.
• All resources and assets MUST be reported, including money on hand, in the bank, or in a safe deposit box; stocks, bonds, CDs, trusts, and pre-paid burial plans; cars, boats, life insurance policies, and real property. Not all resources are counted against eligibility, including your personal residence, one vehicle, and resources necessary to self-support.
• Spenddown - If you meet all Medicaid requirements, but have excess income, you can reduce your excess income by incurring medical expenses, placing you in Medically Needy group. A deductible, or spenddown amount, is calculated for a six-month period (2007: $1557-$2335 for 1, $1982-$2815 for couple). Current and some old unpaid medical bills can be used as deductions against the spenddown amount. Coverage starts only after the spenddown amount is reduced to zero, and runs through the end of the spenddown period, after which you can reapply for another period of coverage.

My thoughts on government (taxpayer-funded) programs

Regarding the Frost family in Baltimore:

• If they lived in Virginia, the only two issues affecting FAMIS eligibility include low family income (below 200% FPL, 2007: $55,220 for family of 6) and lack of access to employer-sponsored or state employee health insurance plans. The application form does not require documentation related to the value of their personal residence, bank accounts, business property, or general monthly expenses. In the FAMIS Select program, the Frosts would be eligible to receive up to $400 monthly to apply towards private insurance or their share of employer-sponsored group health insurance premiums. This program would place the Frost's medical care and expenses within the private insurance sector, not the public Medicaid system.
• In this scenario, I believe that means-testing is irrelevant. The potential monthly subsidy to a low-income family is a great incentive to participate in the private healthcare system, assuming insurance is available to them, and to be responsible for all associated copays, coinsurance, and deductibles. This is truly a step-up not a hand-out. But if the family is not reporting all of their earnings in order to qualify, then they've got a bigger problem than receiving medical benefits.

Regarding seniors who shelter assets:

• After reading much of the regulations surrounding the valuation or exclusion of resources for medicaid applicants, I am not convinced that one spouse would be able to squat on a Park Avenue apartment so that the other spouse could receive nursing home benefits, a situation which Megan McArdle eludes to at Asymmetrical Information. In Virginia a 1994 amendment invalidates the provisions in inter vivos trusts which provide for the suspension, termination or diversion of income of an irrevocable trust in the event that the grantor applies for Medicaid or needs medical, hospital or long-term care. The trustee must distribute the principal and interest to the potential medicaid applicant while only $25,000 will be exempt from the provisions. Here I believe that it would be seriously irresponsible for a couple who 'squat' on a Park Avenue apartment to not have Long Term Care Insurance.
• Regarding wealthy families who establish complicated trusts to protect their assets and to avoid taxes, transfer costs or capital gains on investments, I believe this is a much larger problem which is beyond the scope of the current discussion of government-subsidized programs. Although I acknowledge that the wealthy in this country do pay a substantial chunk of the dollars paid in taxes, I believe that the ratio of assets, income, and taxes paid is seriously out of proportion if you consider the same ratios throughout all income levels.

For years, my grandmother paid premiums for long-term care insurance. But my aunt retired early and she, along with my father and other siblings, chose to care for her in her home and paid for part-time nursing care at home. Now my grandmother didn't earn alot, but she was smart and responsible with her money. She was the personal bookkeeper for an affluent family in Oklahoma City and was great with numbers. If dementia had not settled in and if she had known her children were spending their own money and wasting her long-term care benefits, she would have given them serious "what for." After she passed away in 2003, there was practically nothing left of great value to split between her four children. One of the home nurses had stolen her jewelry, the children had spent the balances of her accounts, and the house which was jointly owned by the children (a change of deed which occurred almost 15 years ago) had become my aunt's personal residence and is worth about $55,000 at most. This just illustrates that even families of lesser means do not consider government programs to be an appropriate entitlement.

Finally a little Something about My Situation

First of all, my challenge to qualify for and obtain assistance in covering medical costs has not required me to enroll in any of the above programs.

• I am not disabled.
• I am 39 (which is under the age of 65).
• I am employed (self-employed as musician).
• I 'choose to save' to prepare for a secure financial future.
• I maintain a debt-free status (paying bills in full each month).
• I have no student loan debt or mortgage debt. I received substantial scholarships and fellowships which the majority of college costs. I have not purchased a home, although I was saving for that purpose.
• I have private health insurance in an individual (non-group) plan.

So why do I have trouble paying for medications?

• My prescription benefit is capped at $1500 annually, which I discovered AFTER submitting a prescription for a $21,000 MS medication. Two years ago, someone asked me - "Will your insurance pay for it?" My naive answer was - "Well, I think so, but I don't know what my copay will be. I guess I'll find out."
• My insurance would not pay for this medication and bounced my case to the pharmaceutical company's benefit investigations department which determined I was not eligible for any state or federal programs. The pharmaceutical company referred me to NORD (National Organization for Rare Diseases) who administrates their assistance program, as well as many other programs. The application to NORD required proof of income (paystubs, tax returns, etc) and financial assets (bank statements, pension statements, etc), listing of property assets (home, car, etc), and details of monthly expenses (mortgage and loan payments, food and shelter, utilities, insurance premiums, etc).
• November 2005, I applied submitting the most recent tax return (2004) which showed $32,696 AGI. (I had not been deducting retirement contributions from taxes so as to show higher income to improve credibility to potentially purchase a home.) Although I had a separate 'business' and 'personal' subaccounts within the solitary bank account I have had since childhood, the total balances were determined to be 'personal' by NORD. Although I am self-employed and file Schedule C, certain business deductions were non-allowed by NORD and were 'added back into' by income for eligibility consideration, including the modest $200 spent on concert attire and depreciation amounts related to musical equipment. With this information NORD awarded me 50% assistance which meant 6 months of medication would be provided after which I would be responsible for the full expense.
• I was told that I could appeal this decision after completing 2005 taxes which I did showing $27,321 AGI. I also documented that during the previous six months, expenses exceeded income by $10,390, the result of decreased income and increased medical expenses. My appeal was denied and I was told that without great debt (ie. mortgage or student loans) I was expected to spend excess savings (ie. retirement money and savings for a downpayment). The woman I spoke with also mentioned that I was not even spending the minimum of what they allowed in their calculations for food and shelter and so I was fortunate. So fortunate and financially responsible that I was expected to pay the remaining $10,000 out of savings for this one medication, in addition to all medications after reaching my insurance policy's $1500 limit which ran out in June 2006.
• This denied appeal marked the beginning of a long search for non-government assistance programs which propose to help with prescription costs. I discovered several copay programs which had closed their MS programs due to insufficient funding. The Patient Access Network Foundation provides disease-specific assistance for lower-income individuals who have insurance, but they denied me because my income exceeded their limit by approximately $5000, although my immediate need was in excess of $10,000. I won't bore you with the LONG list of applications and denials, but it was rather discouraging.
• So February 2007, I reapplied to NORD for assistance - this time armed with $19,417 AGI, medical expenses of $15,542 in 2006, and segregated personal, business, and retirement accounts. Additionally, I sent my application by certified, signature-required mail to the director of NORD's Copaxone assistance program. This time I was quickly approved to receive Copaxone free for 12 months. But I still have to go through the same process next spring, and the next spring, and so on, during which I cannot risk earning or saving too much for fear of becoming disqualified. And I still exhausted my prescription coverage in July this year, so I'm on my own to pay for meds until January 2008.

My situation does not belong on the books of government-subsidized programs. My argument is with the federal and state regulations which allow a private insurance company to arrange benefits for self-employed persons such that the beneficiary will be unprotected from catastrophic medical expenses. My argument is also with the business practices of pharmaceutical companies, who are allowed to exploit their blockbuster drugs and price-gauge individuals suffering from chronic illness, in order to improve their market share and profit margin.

I've written just a little about my personal experience in previous blogposts. Please feel free to browse through all such articles and leave a comment.

Entrepreneurs and Revolutionists

This morning, I opened my Feed Reader and found an interesting article at Repairing the Healthcare System, "What is an Entrepreneur?"

After discovering Dr. Feld's blog, I have cheered and I have cringed.

Here's a cheer inducer--

"Keep Your Head In There!" - Repairing the Healthcare System
The lesson to be learned is never put you head in front of a fast ball. The healthcare system lesson to be learned from this story is even though they (the healthcare insurance industry) are bigger, more powerful and stronger you need to stick in there and do the right thing. Remember there would be no healthcare system without the primary stakeholders, the patient and the physician.

This one induced a cheer, followed by a cringe--

"This Is What I Mean By Innovative Thinking, Part 1" - Repairing the Healthcare System
The people who control the healthcare system have to start thinking of concepts that will benefit all the stakeholders and not simply the stakeholders in power. I am certain the stakeholders in power are threatened by the potential for change just as the controllers of the educational system are. We now live in a knowledge based economy. The legacy thinking in healthcare has to change. It is presently proprietary and opaque. It is dominated and controlled by the insurance industry. It has to be transparent and beneficial to all.

I agree that the dominant stakeholders in our current healthcare system are threatened by the potential for change. Those in the insurance industry, and the agents who represent and broker insurance products, would have us (patients, individuals, consumers) believe that an individual's struggles or complaints are the direct result of personal irresponsibility in making poor choices in life. Although there may be individuals who make poor choices, such as choosing to eat a dozen donuts each week and not exercising, I strongly disagree with the notion that individuals find themselves seriously underinsured because maybe they didn't research all insurance options available and failed to choose the 'full coverage' package, or that they chose a less expensive package when a 'full' package would have been available, or if only they had used an agent...bullshit!

The insurance industry, including the 'non-profit' providers, are truly in the business of business, not facilitating health. I vaguely remember when health insurance was called medical insurance. This is one reason I never expected pro-health services or activities, such as yoga or nutrition counseling, to be covered by my medical insurance. But I did expect that my medical insurance would cover medical services and products, such as doctor's visits, hospitalization, surgery, testing, vaccines, physical therapy, and most importantly prescription medication.

And this induced a cringe -


"This Is What I Mean By Innovative Thinking, Part 1 (con't)" - Repairing the Healthcare System
Only the consumer will change the healthcare system. It will start with the demand to change the insurance paradigm to the ideal medical saving account. We have seen the failures of the government as a single party payer in the VA Healthcare System. I suspect we are only seeing the tip of the iceberg. I cannot understand why politicians think it will be any better when a single party payer system is applied to the entire population.

I know the consumer does not want that system.


Wait a minute! How do you know what the consumer wants?

If you want to know, ask the consumer, ask the patient.

If you take the time to listen, you will hear consumers strongly supporting a move toward a single-payer system or at least a system which requires the stakeholders to play by the same rulebook. So far I'm only hearing business leaders, investors, policy makers, entrepreneurs, and other big stakeholders say that we need to educate and convince the individual consumer to take control of their healthcare dollars and to negotiate or bargain-shop for healthcare services.

"Optimism Is The Operative Word. We Can Do It!" - Repairing the Healthcare System
The patients must be responsible for their care and their healthcare dollar. Access to care must not be restricted. Patients are capable of being responsible consumers of healthcare given the appropriate incentives.

We will need strong leadership. We need a leader who really understands the problems in the dysfunctional healthcare system. A leader who is not afraid to act contrary to the pressure of facilitator stakeholder vested interests There does not seem to be one around. We will need groups of citizens who are angry enough at the present system who will be willing to demand a consumer driven healthcare system. People power can demand that leadership. First they have to understand the problem and solutions.

Okay. Dr. Feld had me again until he used that phrase, 'consumer driven healthcare.' Here's an interesting website I just discovered yesterday. Republicans for Single-Payer Universal Health Care with Informed Choice. I was intrigued and looked further into the site to see what they had to say which led me to Balanced Choice in Health Care for All. In the description of Balanced Choice, it becomes apparent that the program is designed to limit the dollar amount which the 'insurance' pays and leave the remainder, called the 'gap', for the patient to pay. This would make the consumer more cost-conscious and thus more responsible in spending their healthcare dollars.

This is the fundamental philosophy behind a consumer-driven healthcare system. And many proponents in favor of a consumer-driven system are the same ones in favor of a market-based system. [A free-market healthcare system is a whole other discussion for another time.]

"What Healthcare System Could Work? A Universal Healthcare System Will Not Work!" - Repairing the Healthcare System
The solution should be pretty clear to all following my blog. I advocate the American way! I believe a consumer market driven system with government making rules for the benefit of all members of the society. When one stakeholder takes advantage of another stakeholder to the harm of the other stakeholder the government has to intercede.

Maybe Dr. Feld has my attention again. I support the idea of uniform rules and creating a level and fair playing field.

Then yesterday, Dr. Feld writes about entrepreneurs and discusses the rise of convenience clinics in large chain stores. One proponent of these retail clinics is Steve Case who founded Revolution Health.

"Revolution Health Group is a leading consumer-centric health company founded to transform how people approach their overall health and wellness. By putting individuals at the center of their own healthcare, Revolution Health allows them to make informed choices and offers more convenience and control over their individual healthcare decisions."

"Revolution Health is part of the Revolution LLC family of companies created by Steve Case to be a disruptive force in industries in need of a "better way."" - (from Revolutionhealth.com)

From Dr. Feld's articles, I don't think that he likes the idea of Redi-Clinic or other convenience clinics due to the effect they may, or may not, have on the stability of physicians in family practice.

"Look What Happens What You Are Not Looking, Part 1" - Repairing the Healthcare System
I believe in-store clinics are a bad idea and they will fail. If successful these clinics can potentially put family practitioners out of business. If they are marginal, they will put a reasonable dent in the primary care physician’s ability to make a living. It is presently difficult for family practitioners to make a decent living. The development of in-store clinics is the result of the difficulties patients are having with affordable access to medical care. If patients have to go to the emergency room of a hospital, wait three hours to be seen, and incur a large bill for a simple illness the healthcare system is not being responsive to the patients’ needs. Convenient Care Clinics’ attraction to patients is they help them avoid these barriers to care.

The growth of these in-store clinics is the result of the primary care physicians’ (PCPs’) inability to set up their medical practices to match the needs and schedules of the hectic life of patients in America today. The blame should not only fall on the PCP. The blame should also fall on organized medicine’s inability to recognize and respond to the needs of the PCPs’ and the practicing physicians’ patients. Organized medicine should be developing programs to teach PCPs how to respond to the changing needs of patients’. If medical practices do not respond to the needs of their patients, someone will.

"Look What Happens When You Are Not Looking, Part 3" - Repairing the Healthcare System
Who is not looking? The consumer, patients, doctors and hospitals are not looking. Some day they will all wake up. It is important to see right now what is happening in front of everyone’s eyes. The devaluation of medical care as a way of lowering the price of medical care is happening right now.

The real problem to solve with medical care costs is the cost of the treatment if complications of chronic disease. The complications of chronic disease cost the healthcare system 90% of the healthcare dollar. Effective treatment can lower the cost by at least 50%.

Unholy alliances are formed by the smell of money. The healthcare insurance companies would love the in store clinics because they serve to devalue the physician driven medical care services even further. Innovative cutting edge ideas for medical care should be developed by physicians. After all, who are the experts in the delivery of medical care? However, many physician groups are dysfunctional because of the pressures of overhead, reduction in reimbursement and malpractice concerns. They are fighting for their lives as reimbursement continually decreases. Physician practices must become more innovative, more efficient and more effective. If not I believe the delivery of quality medical care in a dysfunctional healthcare system with decrease even further.

The smell of money. Mmmm. (I wish.)

This past Tuesday, Steve Case through Revolution LLC launched a subsidiary Revolution Money, a payment system company. "Revolution Money's first two major offerings are Revolution MoneyExchange, a service for social and instant messaging networks that enables consumers to safely transfer funds via the Internet for free; and RevolutionCard, a credit card protected with a personal identification number," says Washington Business Journal.

On August 3, 2007, Revolution LLC launched Revolution Places, "an original approach to sustainable destination resort communities." Costa Rican President Óscar Arias Sánchez and Revolution Chairman Steve Case announced the first development, "Cacique, Costa Rica, a first-of-its-kind 650-acre luxury resort community scheduled to open in 2010."

"Revolution Places will bring together premiere hospitality partners and innovative lifestyle brands to develop a new authentic vacation experience that retains the local environment and culture. With a full complement of sustainability principles and community involvement, Revolution Places will create high-end developments that provide consumers with treasured and limited for-sale vacation real estate. These developments will also feature personalized service and unique amenities for home owners."

On July 25, 2005, Revolution Living introduced Lime - Healthy Living With A Twist. "Lime is part of a larger plan by AOL cofounder Steve Case and his company, Revolution Living, which bought the media group [Wisdom Media Group] in April as part of its investments focused on a more natural, healthy lifestyle. Lime will provide a fresh perspective on health and wellness, including content related to healthy foods, mindful exercise, alternative healing, and eco-friendly living. Lime will help consumers better themselves physically, intellectually, and spiritually, and help them live in balance, marrying "what's good for you" with "what feels good." "

Beyond Redi-Clinic, Revolution Health is affiliated with CarePages which is a social networking site, ConnectYourCare which offers assistance to employers and consumers transitioning to consumer-directed healthcare, Extend Health which offers alternative health insurance solutions, and drugstore.com which offers online shopping. Also, Steve Case is finding businesses which cater to the health living lifestyle and is making deals and purchasing large interests in such companies as Gaiam which produces DVDs and equipment related to yoga and pilates. In April 2007, Revolution Health even formed a partnership with the American Academy of Family Physicians "with the shared mission to help consumers find a “medical home,” help technology work seamlessly for consumers and promote a more patient-centered model of care."

As interest grows, I predict that Revolution Health and all of the subsidiaries of Revolution LLC will prove to be a powerful force, very Google-like, in shaping how we think of healthy living. Even PC Magazine, reviewed Revolution Health as a 'Site of the Week' in January 2007.

Finally, let's return to yesterday's blog post by Dr. Feld.

"What is an Entrepreneur?" - Repairing the Healthcare System
How can the healthcare system promote innovation and entrepreneurship to reform the healthcare system for the consumer’s benefit while maintaining freedom of choice for patients and intellectual freedom for physicians. Both freedom of choice for patients and intellectual freedom for pysicians have been severely hampered in the last 35 years. The impingement on these freedoms by restrictions imposed by rules, regulations, and system advantage to secondary stakeholders have led to the mess we are currently encountering.

I believe the mess is a result of the influence various stakeholders’ vested interests have on the political system. I also believe the time has come for the consumer as the most important stakeholder in the healthcare system to demand that the politicians hear them. The politicians need to stop listening to and acting on the vested interests of secondary stakeholders who control the system presently.

This is going to take the will of the people to be informed and express their vested interest. I believe we are getting there and being heard. We still have a couple of problems. It is going to take a Google-like entrepreneur to help the consumer solve the existing problems in the healthcare system.

Sounds to me that Revolution Health just may reveal Steve Case to be a 'Google-like entrepreneur' indeed.

Now please don't ask me if I think the Revolution Health movement is THE ANSWER to our problems....because I don't.