An Autism Diagnosis: Key to Unlocking Needed Services?

Michael Poreda’s excellent post yesterday called attention to what looks to be a fascinating panel discussion — “Serving Urban Students With Autism: Newark, New Jersey” — to be held here at Seton Hall Law on April 5th.  Michael interviewed Leslie Long and Michele Adubato — Adubato will be speaking on the panel — of Newark’s North Ward Center which plans a 2011 launch of a new initiative to better serve individuals living with autism in Newark.

In his post, Michael writes that he “wanted to know if students with autism in Newark were getting the same services as students elsewhere in the New Jersey, and if not, whether law or policy played a role in the disparity.”  He goes on to highlight a number of areas of potential disparity between Newark and New Jersey’s suburbs and towns, all disturbing.

I was particularly troubled by Michael’s report that the Newark schools’ wait-and-see approach to diagnosing children with autism leads to children from birth to age three being denied (or simply not accessing) early intervention services.  There is nothing wrong in theory with waiting and seeing with regard to diagnosing an infant or toddler with autism.  I believe the choice to wait-and-see is one that parents should be free to make in consultation with their baby or child’s healthcare providers.  That choice is in no way free if advocating for and/or accepting an autism diagnosis is the key to accessing needed services.  (My previous post on the pressure parents can face to accept the diagnosis is here.)

In my opinion, early intervention services should never be linked to a diagnosis; they should always be based on the demonstrated needs of the individual child.  A key takeway from the dispute over the inclusion of Asperger’s Disease in the DSM-V is that while diagnoses of mental disorders can no doubt be useful in certain contexts, they are also mutable and political, describing and potentially shaping a complicated reality.  They seem a shaky basis for divvying up scarce educational resources amongst very young children.

In New Jersey children do not, legally, need to be diagnosed with autism — or any other   -ism — to access early intervention services.  A child with an autism diagnosis is presumptively eligible for early intervention services, but that same child could also qualify without the diagnosis, based only on his or her individual developmental delays.  After a child turns 3 and is no longer eligible for early intervention, a diagnosis is still not (supposed) to be the key to services.  In New Jersey, a child between the ages of 3 and 5 with developmental delays can qualify for special education as a “preschooler with a disability.”  N.J.A.C. 6A:14-3.5(c)(10).  I wonder whether the use of these avenues to accessing services is more common in the New Jersey suburbs than in Newark– and whether this is yet another disparity.

Serving Urban Students With Autism: Newark, New Jersey

[Ed. note: We are pleased to welcome to the blog Michael Poreda, a 3^rd year student here at Seton Hall Law and the  Executive Director of its Urban Education Law and Policy Initiative (UELPI)--a student organization formed to promote awareness of, dialogue about, and activism benefiting urban education.  On April 5, 2010, UELPI will be convening a panel to discuss the challenges of administering special services to students with autism in urban communities.]

I recently sat down with Leslie Long and Michele Adubato of Newark’s North Ward Center to discuss the issue of autism services in Newark.  Founded in 1970, the North Ward Center is a non-profit community development organization that delivers social services to low-income families in Newark and Essex County through five institutions.  In 2011, the Autism Center will become the sixth institution.  The Autism Center will be headed by Michele Adubato, a former special education teacher and school administrator who has worked with children with autism for many years.   Leslie Long comes from a background of public policy.  She has directed programs for people with developmental disabilities throughout New Jersey.

I went to speak with Adubato and Long after finding that New Jersey has the highest autism rates in the country, yet the reported rates of autism in Essex County are lower than in surrounding communities and lower than the state average.[1] I wanted to know if students with autism in Newark were getting the same services as students elsewhere in the New Jersey, and if not, whether law or policy played a role in the disparity.

Adubato is disturbed by the Newark school system’s proclivity not to diagnose children with autism because of a policy against stigmatization.  Adubato says the key with autism is early intervention.  The stigma-avoiding “wait-and-see” approach that the Newark school system often takes with children exhibiting autism-like behaviors avoids early intervention.

The problems facing children with autism in Newark are many.  At basic level, many parents are simply unaware of the symptoms of autism, the services available, the prognoses, or their rights.  Even when a parent is concerned about a child’s development, the parent may find the public schools resist diagnosis and the entitlement to special services that comes with the diagnosis.  Furthermore, in Adubato’s experience, the schools in Newark are not delivering the same caliber of services that are delivered in some suburban schools.  Even if a parent does get a diagnosis and some services, parents are unaware of their legal rights concerning the schools system’s proposed special education plan for the disabled student.  It is common for schools to select achievement goals for students with autism that do not actually address the most pressing issues of self-expression.  Parents are often unaware that they have a right to refuse the school’s proposed Individualized Education Plan (IEP) and to demand what they deem an appropriate IEP.

The transition into adulthood poses another major legal problem for students with autism.  Special services are only available through the school system up to age twenty-one.  Afterwards, the state administers services to people with autism through the Department of Developmental Disabilities (DDD).  Getting an approval for services can be downright treacherous.  Ms. Adubato related one frustrating story of a grandmother who was told that her autistic grandson needed to write his own application for special services.  DDD then used the grandson’s ability to write an application for special services as evidence that he wasn’t entitled to special services.

When it is inaugurated, the Autism Center will become a “one stop shop” for people with autism.  It will be a charter school for children with autism and provide parents with legal guidance for navigating the confusing bureaucratic world of special services.

On April 5, 2010 at 4pm, UELPI will host “Serving Urban Students With Autism: Newark, New Jersey,” a panel discussion at Seton Hall University School of Law.  We plan to bring together an educator, a parent, a lawmaker, a lawyer, and a member of an urban board of education to discuss the challenges of delivering services to students with autism in urban communities.  Kim Williams will share the challenges she faced as the parent of a student (now an adult) with autism who passed through the Newark public schools.  Michele Adubato will discuss why she left Newark schools after years of service there to found a special autism charter school.  Assemblywoman Grace Spencer will comment on the state’s recent efforts to help people with autism, and Attorney Paul Prior will share his perspective on the legal issues facing students with autism.  Suzanne Mack, a long-time member of the Jersey City Board of Education and the parent of an autistic child, will discuss her perspectives on building a large urban autism program.  The panel is tailored to meet the interests of a diverse audience: students, educators, parents, and lawyers all stand to gain important insights from this dialogue. All are welcome to attend.

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[1] In 2007-2008, New Jersey’s average rate of enrollment of students with autism of 2.29 per 1000.  Essex County’s rate was 2.0 per 1000.  See Nancy Scotto Rosato  & Sandra Howard, Reporting of Autism in the New Jersey Special Child Health Registry Prior to the Implementation of the 2007 Mandatory Reporting Law, available at http://www.state.nj.us/health/fhs/eis/documents/report_on_autism.pdf.

Of Summits, Nadirs & Reconciliation

There are any number of places to find recaps and summations of the Health Care Reform Summit. This article from AP’s Erica Werner, “Obama, GOP agree on some health areas,“ outlines the commonalities and differences; this article from AP’s Charles Babington, “Obama, GOP fail to reach accord on health bill,“ focuses more on the apparent failure of the process. Perhaps the two articles display a glass half-full/ half- empty rift within A.P. as well.

Seemingly, the one aspect of the health care and the health care finance system Democrats and Republicans agreed most strongly on is that the glass is, euphemistically stated, half- empty. The fundamental disparities between the two groups, however, become apparent as soon as the discussion moves towards how to fill that glass. Notably, the Republicans have strongly espoused that the year’s worth of work represented by the House and Senate bills be “scrapped,” or, in the words of Senate Republican leader Mitch McConnell of Kentucky, “start over with a blank piece of paper.” The Senate bill runs 2400 pages.

But perhaps the most significant thing which happened today at the summit is what was not said. When Republicans repeatedly asked for reassurances that Democrats would not circumvent the parliamentary procedure of the filibuster with the parliamentary procedure of reconciliation, the Democrats, including President Obama, declined. In doing so, the Democrats reserved for themselves the ability to pass a bill with a simple majority in the Senate (51 votes) instead of the 60 votes it would require to overcome a filibuster.

As WaPo’s E.J. Dionne put it:

Obama sent a very strong signal toward the end of the summit: He wants a bill even if the only way to get it is through the reconciliation route. “I don’t think that the American people are interested in the process inside the Senate,” Obama replied in response to Sen. John McCain’s criticism of the idea that the Senate might try to pass a bill with fewer than 60 Senate votes. Most Americans, Obama said, believe in “majority rule.” So they do.

I have already written about my own constitution based questions and misgivings regarding the filibuster as practiced in modernity–wherein Senators need not go through the arduous task of actually holding the floor with non-stop speech. Where arguably, the day-in and day-out de facto supermajority requirement for the Senate to pass legislation begs the question: Yes, “Each House may determine the Rules of its Proceedings….” but what happens when the rule of procedure swallows the law?

Ezra Klein writes:

According to UCLA political scientist Barbara Sinclair, about 8 percent of major bills faced a filibuster in the 1960s. This decade, that jumped to 70 percent. The problem with the minority party continually making the majority party fail, of course, is that it means neither party can ever successfully govern the country.

But perhaps this can all be reconciled.

Reform Rodeo! The Summit, Speed Dating, and More.

1. Summit!: Fretting about how to get your dose of tomorrow’s “summit”? Don’t worry, CSPAN has got you covered for the Health Care Summit that is kicking off at 10am.

2. Managed Care Meltdown?: Joe Paduda at Managed Care Matters points out that the Anthem rate increases have shown an inability for private insurers to control costs.  What Paduda is missing in his piece is advice to private health insurers about how to manage costs without another “managed care backlash” like we had in the 1990s.

3. The Cost Conundrum’s Conundrum, or Just a Canard?: Maggie Mahar has a beef with the New York Times’ channeling of Dr. Bach’s New England Journal of Medicine article, where Dr. Bach criticized the  Dartmouth Atlas researchers’ methodology by claiming that they failed to risk adjust. Dr. Atul Gawande also believes the criticism is misplaced.

4. Health Care and Reconciliation are BFFs: NPR reports on a somewhat cozy relationship between reconciliation and previous health care initiatives.

5. What do speed dating and OB/GYN docs have in common? Kevin MD discusses how hospitals are utilizing speed dating techniques to match obstetricians with potential patients.

6. HIT, Yeah You Know Me: Dr. John Halamka with a slew of handouts from the HIT Policy Committee’s recent meeting, as well as notes from a recent meeting of the HIT Standards Commitee.

While Medicaid Enrollment Rates Increase, States Face Financial Pressure to Decrease State Medicaid Spending

Last week, the Kaiser Family Foundation released a report indicating a large jump in state Medicaid enrollment from June 2008 to June 2009.  The report said that the 7.5 percent increase was the greatest one-year jump in enrollment rates ever, with over 3 million people joining the public health program funded jointly by the federal government and individual state governments.  The reason for the increase  is thought to be that because more people became unemployed due to the economic crash, more individuals turned to Medicaid for health coverage.  However, because the economic downturn meant less revenue entering into state budgets, state Medicaid programs have not been able to keep up with the rise in new enrollees.

During a convening of state governors at the White House this week, state officials will likely raise the issue of Medicaid spending. The issue is pressing in light of the impending funding cut when stimulus money from the American Recovery and Reinvestment Act of 2009 will expire in December of this year.  The governors will likely ask that the stimulus funding be continued until states can somehow make up for their large current budget deficits.  In addition to asking for more money, the governors will also likely discuss the feasibility of health care reform efforts.  With both House and Senate versions of health care reform proposing increases to state Medicaid programs to ensure the coverage of more uninsured individuals, the state governors would, understandably, like to know where the money for such expansion would come from.

The National Association of State Medicaid Directors estimates that states’ budgets will fall  short  $140 billion in the next fiscal year.  This means even less money for the likely further increase in Medicaid enrollment to come this year, as Medicaid enrollment generally lags behind unemployment.  To account for the deficit, many states are planning to reduce their Medicaid programs. USA Today finds that three categories of such reductions exist:

• California, Arizona and Virginia propose reducing who’s eligible. In Arizona, 310,000 people would lose coverage. California also wants to increase premiums.
• Michigan, Tennessee, Massachusetts and others propose eliminating benefits. Masachusetts’ elimination of restorative dental services would save $56 million, says Medicaid director Terry Dougherty.
• Texas, Pennsylvania, Louisiana and others propose cutting payments to hospitals, doctors or nursing homes. Several states are considering new taxes on hospitals as a way to avoid cutting these payments.

States that accepted stimulus money to expand their Medicaid programs in 2009 are restricted from any such cuts that would affect low-income enrollment.  However, if the stimulus funding is not extended, some states are planning on heightening eligibility requirements.  For other states, while decreasing hospital and doctor reimbursement seems like the worst possible option– given that many doctors have already stopped accepting  Medicaid patients due to what they deem to be an insufficient rate of reimbursement– many states’ officials find that the only other viable option they have is raising taxes.  Many state leaders refuse to increase taxes in fear of the political backlash come November.

Realizing the need for health care reform to help manage the burden of paying for health care, state governors have stated a desire to be part of the health care reform conversation.  Many have already expressed their dislike for individual mandates, which they believe will drive more individuals to state Medicaid programs.  For the most part, however, the governors want reform and they want it now, finding that they simply can’t afford to wait another year.

It is also worth noting that an underlying issue from these new numbers is whether the Medicaid program is actually a good prototype for expanding health care coverage.  Drew Altman, President and CEO of Kaiser, put in perspective Kaiser’s report as well as the concerns of public spending that were sparked by the Centers for Medicare and Medicaid Services’ projections for 2009-2019– which forecast that public spending on health care will surpass private spending.  He noted that while spending in public health insurance programs would increase, the cost-benefit would be better, since per capita costs on health care were lower in government-run programs than in private insurance programs.  According to Altman, such numbers did not undermine health reform efforts, but instead denoted “the need to control health care costs in the public and the private sectors alike.”

Why Primary Care in Medicare Matters

Why should we care about primary care in Medicare?  Early in the reform discussions, preventive and primary care was emphasized; in addition to extending medical care to all, reform would also implement preventive measures to keep them well.  In the current reform scrum, some are back peddling pretty fast, and in the course of finding “consensus” points (often focusing on cost-savings), we might lose conceptual coherence.

Ken Thorpe’s new Health Affairs article on chronic care patients in Medicare offers sound research and helpful analysis.  Thorpe’s data point toward a subtle explanation for health inflation keyed not to the increased cost of high-tech interventions, but to a shift in the conditions for which treatment is provided:

Our results highlight important changes in the medical conditions accounting for the rise in spending among beneficiaries over time. The most notable changes were in spending on a handful of chronic conditions: diabetes, kidney disease, hyperlipidemia, hypertension, mental disorders, and arthritis.

Thorpe has long argued that our health care delivery and finance system is stuck in a 20^th Century of acute care, while our 21^st Century needs have migrated toward chronic care.  As he has argued previously, these chronic care needs call for care at a human scale, including care management and supportive community-based care.  But he also points out that many chronic conditions are at least partially preventable, and that attention and resources should not be directed only to treating these conditions, but also to forestalling their incidence.

Prevention is, then, vital to any health care system.  But haven’t studies repeatedly shown that preventive care is not cost-effective?   Sorting this out requires that we step back and assess not only what “prevention” means, but also what we value in health care.

Preventive care can usefully be separated into three categories, as Ron Goetzel  (an Emory University colleague of Thorpe’s) has described.

• Primary prevention: Health promotion measures focus on lifestyle and simple interventions such as vaccinations to keep people from developing sickness; often cost-saving.
• Secondary prevention: Targeting people with preconditions for illness, including genetic or lifestyle markers, with screening technology, maintenance drugs, in order to forestall or prevent the manifestation of the condition; rarely cost-saving, in part because it is often applied to low-risk populations. Worth it? That depends on the design of the intervention and one’s metric for assessing health care value.
• Tertiary prevention: In this context, coordinated care management for those with chronic illness.  Properly implemented, chronic car management could “flatten the curve,” but is unlikely to be “cost-saving.”

So, whether “prevention” can save money (a claim Thorpe’s paper doesn’t make) is a complicated question.  In addition, it is often a poorly framed one. Explicitly or implicitly, cost-based objections to prevention often suggest that preventing one illness simply means that the person will die of something else, or less simplistically, that keeping people alive longer is cost-increasing, not cost saving.  Steven Wolf has elegantly responded to both objections:

[S]keptics of prevention argue that everyone dies of something; preventing demise serves only to allow a different disease to generate illness and spending. However, the aim of health promotion and disease prevention is not to prevent the inevitable but to “compress” morbidity, maximizing health until death.

Another common criticism is that prevention rarely saves money; it costs society if people live longer. The same applies to disease treatments. Health is a good; it is not purchased to save money. Health is a good that costs too much under the current medical care system, a problem of inefficiency that calls for wiser resource use, such as spending less per health unit gained (lower cost-effectiveness ratio). Disease prevention offers a way to improve health with low cost-effectiveness ratios and to also modulate disease rates. To reject health promotion and disease prevention because they do not save money (i.e., cost-effectiveness ratios are not negative) misses the point. (citations omitted)

Advocates who would shift our systemic emphasis to prevention and management of chronic illness, then, are not naïve about cost implications.  To the contrary, they address the issue head-on, with a three-step argument:

• The purpose of our system is or should be the maintenance of or restoration to high levels of functioning consistent with a fulfilling life.
• Our needs have largely shifted from acute to chronic interventions, and our system should shift to meet those needs.
• In preventing or managing chronic illness, as with all interventions, we should carefully examine the capacity of methods to meet our needs, and to demand value for those being served.

Applying this sort of argument to primary care, Goetzel elsewhere advocates skepticism of attempts by medicine to turn prevention into a high-tech enterprise:

We have medicalized prevention and health promotion in this country so that most people believe that only doctors in clinical settings can deliver these services. Although effective in many cases, this approach is the most expensive method of delivering prevention. If we expand our arsenal of potential interventions to include environmental, ecological, and policy changes, in addition to individually focused counseling and coaching programs, we can change the cost-effectiveness equation.

Thorpe’s article has garnered much-deserved attention, although it is tempting to think of his data in only cost-benefit terms.  That is not true to Thorpe’s conclusion, which is consistent with efforts to redirect attention from the business enterprise of health care to the health needs of Americans:

The U.S. health system remains predicated on providing acute, episodic care that is inadequate to address the altered patterns of disease now facing the American public. Our results highlight the need for prevention and care outside doctors’ offices and hospitals designed to address the changing needs of patients at risk for or living with chronic disease and, often, multiple comorbidities. As [reformers] continue their efforts to reshape the U.S. health system, they must address these changed health needs through evidence-based preventive care in the community, care coordination, and support for patient self-management.

Use of APRNs in Primary Care Settings

Some health care problems must be addressed whatever happens with reform. High on the list is the supply of primary care professionals.  Shortages have been reported in Massachusetts, and primary care access concerns have been raised in national reform discussions.  The shortage of primary care physicians is often tied to their low income, compared to specialists, and the consequent diversion of medical graduates to specialties.  The shortage of primary (and in some areas, specialty) physicians has prompted recommendations for increased medical school enrollment and residency slots for all areas of medical practice.

The wisdom of pumping up physician supply has been questioned.   It has been noted that, beyond a low threshold, increasing specialty physician supply is poorly correlated with better outcomes, and that previous efforts to increase supply has made the rich richer and the poor poorer, as graduates have flocked to locales and specialties already well-served by physicians.

So what is the proper policy response to a shortage of primary care physicians?  Physicians claim exclusive control of a broad swath of professional practice.  They dominate primary care, and exclusively control a more and more finely differentiated series of specialty fields.  With power comes responsibility, one might think.  Richard Cooper, a leading analyst of physician supply, commented in 2002 (at a time when many saw a surplus, not a shortage, of physicians) in an article with colleagues on the ramifications of this broad near-monopoly in a profession with falling production and fixed supply:

The sociologist Andrew Abbott has observed that “a profession whose jurisdiction is excessive must increase its productivity or expand its numbers.” Conversely, “when a powerful profession ignores a potential clientele, paraprofessionals appear to provide the needed services.” These statements characterize the dilemma that physicians now face. Their ability to increase their productivity is limited by their declining work effort. Their ability to grow their numbers is hostage to the belief that surpluses exist. And organized medicine has embarked on a vigorous campaign to thwart expansion of the NPC [non-physician clinician] disciplines. Yet it was shortages in the past that motivated state legislatures to remove the barriers to licensure for NPCs and to enlarge their range of privileges, and it is perceived professional opportunities that stimulated the creation of new disciplines and the expansion of existing ones. (footnotes omitted)

So, health reform efforts have emphasized access to primary care for its beneficial effects, while the supply of primary care docs has suffered a flight to specialty practice.  Is it, as Cooper suggested, time to rethink the place of non-physician caregivers on the front line of primary care?  As advanced practice registered nurses (”APRNs”) have gradually increased their scope of practice, studies and meta-studies have found that outcomes are equivalent when services are provided by a physician or APRN, and patients satisfaction measures may favor nurse practitioners.

But what about the nursing shortage?  It may be that expanding the profile and responsibilities of APRNs could further efforts to recruit and retain nurses.  Talented, hard-working nurses have long been concerned that their career path is limited; their salary steps are few and shallow, and they are unable to gain responsibility and autonomy commensurate with their training and experience.  Facilitating RNs’ graduate education to allow licensure as advanced practice nurses would enrich their career paths and encourage then to remain in the profession.   To move in this direction, those states that have not done so could expand the scope of licensure of APRNs to permit more fully independent primary care practice options.   The length of time needed for education and training would be long, but not as long as for physicians; compensation would have to be increased to reflect a higher level of training and responsibility, but not to the compensation level of physicians.

The path to regularizing the scope of practice for APRNs is described in a 2008 consensus document endorsed by 39 national general nursing and nursing specialty organizations.  A 2009 report from the Connecticut Office of Legislative Research described that state’s APRN scope of practice:

Advanced practice registered nursing is defined as the performance of advanced level nursing practice activities that, by virtue of postbasic specialized education and experience, are appropriate to and may be performed by an APRN. The APRN performs acts of diagnosis, and treatment of alterations in health status and must collaborate with a Connecticut-licensed physician. In all settings, the APRN may, in collaboration with a licensed physician, prescribe, dispense, and administer medical therapeutics and corrective measures and may request, sign for, receive, and dispense drug samples.

The required “collaboration” with physicians was also described:

The law defines “collaboration” as a mutually agreed upon relationship between an APRN and a physician who is educated, trained, or has relevant experience that is related to the work of the APRN. The collaboration must address a reasonable and appropriate level of consultation and referral, patient coverage in the absence of the APRN, a method to review patient outcomes, and a method of disclosing the relationship to the patient.

The physician oversight rule is typical, and has been the source of tension with APRNs.   Physicians can be suspicious of APRNs, and it has even been suggested that physicians may avoid working with them as APRNs gain more autonomy — a reaction that could be fueled by concerns with APRNs’ competency and training, or by a desire to weaken a source of competition for control of the profession.

APRNs might fill the primary care end of the physician practice spectrum, should physicians continue to flee primary care for more remunerative specialties.  There are genuine professional competency issues to work out, but they ought not be resolved by physicians as a matter of naked market power.  In addition, the terms of appropriate collaboration between physicians and APRNs need to be ironed out, to protect patients while avoiding the possibility of anti-competitive refusals to deal with APRNs.  Many researchers and physicians welcome the emergence of APRNs as partners in primary care practice.  Further research on the proper autonomous practice settings for APRNs will serve the interests of patients, and can guide planning for the future of primary care.

Reform Rodeo

1a. Health Reform Post-Brown: Kaiser Health News Staff Writer Jenny Gold discusses the Democrats’ seemingly new strategy of focusing on repealing health insurers’ antitrust exemption.

2. Bending the Curve, Success Story: Maggie Mahar over at Health Beat has a wonderful overview of  Maryland’s successful approach to reducing health care costs.

3. Comparative Effectiveness: Dr. Nortin Hadler offers a forceful and nuanced view on the role of comparative effectiveness research.

4. Medicare and Technology: The New England Journal of Medicine has an interesting piece on how Medicare determines which health-related technologies to reimburse.

5. Quack Attack: Over at Science-based Medicine, Dr. Steven Novella covers the retraction of Andrew Wakefield’s 1998 article that claimed to link autism with the mumps-measles-rubella (MMR) vaccine.

6. Neuro News: The New York Times reports on how new studies may question some bedside techniques used to diagnosis the degree of brain activity in severely brain-injured patients.

7. Bonus: For those interested in more health-related links, Joe Paduda at Managed Care Matters hosts the current Health Wonk Review

An Overview of Exchanges under the House and Senate Bill

On January 8th, 2010, the Alliance for Health Reform and The Commonwealth Fund  co-sponsored and moderated a panel discussion on the health insurance exchanges that are being proposed in both the House and the Senate health reform bills. The panel consisted of Washington and Lee professor Timothy Jost, John Kingsdale of the Massachusetts Commonwealth Health Insurance Connector Authority, and Philip Vogel of the Connecticut Business and Industry Association (CBIA), which runs the non-profit CBIA Health Connections, a health insurance exchange for the state of Connecticut.

The co-sponsors have uploaded all of the event’s materials, including a webcast of the entire event, as well as all of the powerpoint slides and papers. All of this information can be found here.

Professor Jost and the Commonwealth fund created detailed charts comparing the differences between the two bills. Below is a reproduction of Professor Jost’s chart, which can be viewed by clicking on the thumbnails.

Both the House and the Senate bills would create new health insurance exchanges that would help consumers and employers navigate the purchase of health insurance. Though the common thread of a regulated marketplace runs through both bills, all three panelists noted the stark difference in the vision and implementation of the exchanges under the respective bills.

Below are some of the key distinctions between the two bills.

The House Bill — Public Option with Opt-Out Possibility

The House’s bill, H.R. 3962 (click here for entire pdf) provides for a federal exchange that would essentially eliminate the individual marketplace for health insurance going forward. A public plan would be offered that would reimburse providers at negotiated rates between those of Medicare and commercial rates. The applicable section of the House’s bill is Title III, entitled Health Insurance Exchange and Related Provisions.

Title III of the House Bill would create the Health Choices Administration with a Commissioner who would oversee the exchange. Citing Section 301 and 308 of the Bill, Professor Jost notes on page 17 of his paper:

The exchange operates at the national level, established within a new Health Choices Administration. The Commissioner of the HCA can, however, permit individual states or groups of states to administer an exchange within their territory in place of the national exchange if specific requirements are met, subject to revocation if the state ceases to meet the requirements of the bill. Even if the HCA delegates exchange authority to a state, the Commissioner retains enforcement authority and can further specify functions retained by the Commissioner and not delegated.

Thus, the House’s bill would create an exchange system that is fairly centralized and regulated, but with added flexibility. If the states fail to implement their own exchange then HHS will implement an exchange for them. Only those policies considered “grandfathered” could be sold outside of the exchange, and such “grandfathering” can only occur in the individual market. (See Section 202). Insurance offered inside the exchange would fit into one of four tiers: basic, enhanced, premium, and premium plus. (See Section 303). These tiers would correspond to different actuarial values of the plans. Subsidies would be provided on a sliding scale that is determined by the purchaser’s income.

The House bill would also limit the medical loss ratio of plans offered in the exchanges to 85 percent, largely prohibit the rescission of contracts, eliminate lifetime coverage limits, eliminate pre-existing condition exclusions, as well as require guaranteed issue and renewal of plans. Variations in premiums based on the age of the insured could only vary by a maximum of 2:1.

Not all of the panelists agreed with every provision. For example, Mr. Vogel took issue with the dependence on the medical loss ratio in regulating the market, instead arguing for a greater reliance on the “claim dollar” as a guide post.

Whether offered inside the exchange or grandfathered, all plans must meet certain requirements in terms of essential benefits, which would be determined by HHS, and would be based on the recommendation of the Health Benefits Advisory Committee–a public/private hybrid entity.

• Click here to jump to section 223 outlining the Health Benefits Advisory Committee

These benefits would include hospitalization, outpatient care, prescriptions drugs, equipment, and a host of other benefits.

• Click here to jump to the section 222 which details the essential benefits.

The House bill would also impose rules regarding the transparency of the plans offered in the exchange by requiring certain information about the plans to be disclosed.

The Senate Approach — No Public Option; Multistate Substitute Would Exist

For whatever reason, the Senate crafted a more complicated framework of exchanges.

A crucial point of divergence from the House bill is the Senate bill’s lack of a federally financed public plan offered through the exchange. However, as discussed below, part of the Senate plan attempts to act as a substitute. Another area of divergence is that existing individual and group plans may continue alongside newly created exchanges, in addition to any grandfathered plans. This is in stark distinction to the House bill that would eliminate some existing policies. Though as noted, the House bill would allow for some grandfathering.

The Senate’s exchange framework is based on section 1001 of the bill which provides that HHS will, with the help of the National Association of Insurance Commissioners (NAIC), craft standards regarding the minimum benefits and other aspects of the plans sold through the various exchanges.

In terms of the Senate’s framework for exchanges, it is as follows. The Senate bill will allow for a number of exchanges that would exist on variety of different governmental levels. Whereas the House bill envisions a more federal exchange system, the Senate bill would instead allow for state-based exchanges, multistate exchanges (i.e. regional), or substate exchanges.

• Click here for a pdf version of Senate bill, as passed.

State-based Exchanges
For the individual and the small group markets, the Senate bill would require each state to create a American Health Benefit Exchange for individual purchasers of insurance, and a Small Business Health Options Program (SHOP) for small businesses purchasers. HHS would regulate these exchanges (See section 1321(a)(1)). These exchanges would be governed by regulations promulgated by HHS, unless the states adopt alternative standards that the HHS finds acceptable.

The state may combine the individual market exchanges with the small business (SHOP) exchanges. Additionally, states have the flexibility to establish regional exchanges or smaller subsidiary exchanges that target specific geographic areas within the state. (See Section 1311(f)). If the states do not create a system of either separate exchanges for individuals and small business, or some combination, HHS will establish an exchange or utilize a non-profit insurer to fill the void. See 1321(c).

The multistate exchanges are important, as they may mollify those who have been touting the idea of interstate health insurance offerings as a panacea for the woes of U.S. health insurance.

Regardless of how any states’ exchange(s) plays out, many of the important provisions of the Senate’s bill such as certain minimum benefits, the ban on lifetime or annual dollar limits, the ban on rescission, and medical loss ratio requirements would apply across the landscape of exchanges.

State Opt-Out Possible
Under the Senate bill, the states would be eligible in 2017 to opt-out of the federal requirements listed above if they can demonstrate that they are providing affordable coverage that is at least as affordable and comprehensive as the Bill requires. Alternatively, the state may be allowed to create a “public health plan” for those under 200% of the federal poverty level. Under this arrangement, the federal government would compensate the state for 95 percent of what would have been provided through premium tax credits as well as cost-sharing reduction payments. (See Section 1331).

Multistate plans: A Compromise?
One major amendment passed on December 24th was section 1334 which amended section 1333 which dealt with multistate exchanges. Under section 1334, The Office of Personnel Management (OPM)–the agency that governs the federal employees health benefit program (FEHB)–will enter into contracts with insurance carriers to offer at least 2 multistate plans through each exchange in each state. (See 1334(a)(1)). These plans will cover the individual and small group market. At least one of those plans must be a non-profit insurance plan, and must be in accordance with the general standards set forth for health insurance plans.

Though there would be a minimum level of benefits and protections required for all plans, the States would be entitled to offer multistate plans with more substantial benefits. However the state will have to defray the costs of the additional benefits.

Unlike the House bill which eliminates the state-based individual market, the Senate bill envisions exchanges that would co-exist with both the individual and small-group markets, and operate under the same rules. Though the Senate bill allows for flexibility, the subsidies provided by the federal government could only apply to insurance plans sold through the exchange.

One of the most important and controversial sections of the amended Senate bill is section 1334(a)(4), which specifies that, in administering the multistate plan, OPM will have the same bargaining power as they currently have for plans offered in the FEHB. Thus, OPM would be able to negotiate for a specified medical loss ratio and profit margin, as well as specified premium rates and any other terms in the “interest of the enrollees.” The goal is for these plans to be offered nationwide. Whether the OPM-run exchange will succeed is obviously yet to be determined, but some like Professor Timothy Jost are worried that the Senate’s plan to allow some plans to operate outside of the exchange complicates the federal government’s job in risk adjustment.

Rebalancing Long-Term Care

Will efforts to modernize home health programs survive insurance reform’s end game?  Providing insurance coverage to as many low-income uninsureds as possible has been an organizing principle in 2009’s health reform discussions, and reconciliation of the House and Senate versions will require satisfying some members that sufficient subsidies will be available to permit the promise of extended coverage to reach the neediest.  The ripple effects of those discussions may reach other reform issues, as leadership attempts to meet budgetary targets.  It would be a shame if this process led to a retreat from the current bills’ innovative long-term care provisions.

As I’ve described previously, the reform effort has contemplated an interesting mix of Medicare and Medicaid improvements to expand access to community based care for people with disabilities and chronic illness.  And the CLASS Act’s inclusion in the mix gives some hope  to those with needs for assistance with Activities of Daily Living (ADLs), as well as their family caregivers.  Those involved in caregiving for a chronically ill family member can testify that they’re not looking to dodge responsibility; to the contrary, they’re hoping to gain assistance to continue providing assistance in the community, to avoid the need for isolating and expensive institutional care for their loved ones.

Health Affairs’ January 2010, Volume 29, Number 1 — “Advancing Long-Term Services & Supports” - (subscription required for some content) is a welcome source of information and analysis in this area.   H. Stephen Kaye and coauthors provide timely data filling out our understanding of who is served, and where.  It is clear that people in need of nursing and personal care assistance prefer to live at home rather than in a nursing home.  About 8.4 million people of all ages with ADL difficulties receive services in their communities, while about 1.6 million receive services in nursing homes.  The median monthly cost in the home care setting, in 2009 dollars, is $928, compared to $5,243 in nursing homes.  About 75% of those in the community live with relatives.  90% have mobility impairments, 55% have cognitive impairments, and 31% have sensory impairments.  Other articles shed some light on programmatic and financial barriers to improving access to home services.

• Terrence Ng and coauthors describe the gaps, overlaps, and regional variation in long term care coverage provided by Medicaid and Medicare. In particular, they report wide variation in states’ adoption of Medicaid waivers and other mechanisms for extending community-based home care. For example, Iowa’s participation rate in Medicaid home and community-based care is 16.8 per 1,000, while Virginia’s rate is only 3.21 per 1,000. The authors also highlight the effects of the failure to coordinate Medicare and Medicaid for long-term care, and the cost-increasing effect of hospital readmissions, traceable in part to Medicare’s poor coverage of long-term care. The current Senate bill, at Sections 2401- 2406, would encourage expansion of Medicaid rebalancing efforts.
• The Public Policy Institute’s Susan Reinhardt discusses programs supporting the community preference of people with nursing and home care needs. She describes diversion and transition programs. Transition (”downstream”) programs are dedicated to moving to appropriate community settings those who would like to leave nursing homes. Diversion (”downstream”) programs fund home and community based services, to forestall or prevent institutionalization in the first place. She points to the reform bills’ support for the Community Living and Money Follows the Person Demonstrations.
• Two pieces do an excellent job of introducing us to those who provide home care. Carol Levine and others describe the plight of family caregivers, traditionally thought of as “informal” caregivers, but clearly the foundation of home health care.  Howard Gleckman provides case studies of non-family member home care workers, highlighting the physical and financial difficulties under which they labor. As needs for chronic care in general and home care in particular increase in coming years, the long-neglected needs of these family and non-family caregivers will have to be addressed. Congress is famously solicitous of the financial concerns of physicians, our most highly compensated caregivers. It is time to focus on the needs of those millions of direct caregivers who every day provide compassionate personal services to our most vulnerable friends and family members.

The January issue of Health Affairs helps to highlight the growing importance of the financing of long-term care.  As we age, and as our needs shift from acute to chronic care, we must wean ourselves from a financing perspective that emphasizes dazzling high-tech interventions and instead embrace the human-scale care offered by home health aides, visiting nurses, and physical therapists.  The pending bills don’t make this shift, but they nudge the battleship a bit.  They leave long-term care financing fragmented among various public and private programs, but they do support some promising programs.

The CLASS Act (Senate bill Section 8002) is a voluntary, opt out social insurance program that would provide some support for home care services.  For the reasons described last year by Howard Gleckman, the CLASS Act is incomplete; among other things, its voluntary nature could create selection problems.  It is a start, however, and would put a useful if imperfect patch on a torn system.  I’ll cite to one final article from the Health Affairs issue to point to a better way.  John Creighton Campbell and coauthors‘ discussion of public long-term care insurance in Germany and Japan contains the germ of a solution to the woes our system suffers.  Both the German and Japanese systems have universal coverage, support family caregivers, and accord beneficiaries a large degree of control over services received.  And they do so at a cost roughly comparable to that experienced by American public payers (Germany a bit less, Japan a bit more).  Organizing long-term care financing through one social insurance program yields efficiency dividends, eliminates stigma concerns, and encourages care at the level and location preferred by recipients.  Maybe it’s too early to be pushing for the next step in long-term care reform, but why can’t we do what the Germans and Japanese have done?  At the very least, let’s not cut back on the progress made in the current bills as we strain for the finish line.

John V. Jacobi on Health Reform & Care for the Chronically Ill

In case you missed it: Health Reform Watch regular, Professor John V. Jacobi, interviewed by Lester Feder for Legal Issues in Health Reform, a publication of The O’Neill Institute for National and Global Health Law at Georgetown University. In part:

Covering the Chronically Ill: An Interview with John V. Jacobi

John V. Jacobi is Dorothea Dix Professor of Health Law and Policy at the Seton Hall University School of Law. The O’Neill Institute’s Lester Feder spoke with him about health reform and covering those with chronic illness.

Lester Feder: Generally speaking, what do you think of what it is looking like we’re going to get out of Congress?

John V. Jacobi: I think that there are two big clusters of issues: one is covering the uninsured, which has gotten most of the attention, for good reason. The other issues, which I’ve been most concerned about is access for the most vulnerable: people with chronic illness and disabilities. On the first part it’s anybody’s guess on how well we’re going to do at covering the uninsured. On the second part, there are lots of interesting structural pieces in the bills that will help people with chronic illness, but I think that the overall structure of the reform may end up undercutting that quite a bit.

The pieces in the bills that are helpful are the ones that create medical homes, or chronic care management, or assure coordination of care for people with chronic illness. It is the sort of change that our delivery system and our finance system really need to be looking at. The problem with getting those innovations to actually work is that much of the coverage under the plans for the chronically ill will be provided through the private marketplace.

And here’s the problem with that: Private insurance companies are more or less profitable  depending on the risks that they accept. They are much more likely to be profitable if they are good at risk selection than if they are efficient and provide good service in other ways. There is such a dramatic concentration of cost in any actuarial pool that if an insurance company can avoid the 10 percent of the sickest people it is going to be doing quite well, whether it’s good or bad at delivering its services. And the ones that attract those 10 percent of the sickest are going to be in trouble unless there’s quite a good risk-adjustment program for premiums, which doesn’t seem to be available yet.

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The Tragic Sense of Health Insurance Reform

It looks like there are now 60 votes behind the “The Patient Protection and Affordable Care Act”, and the set of amendments to it released today. For the sake of this post, I will assume that this Senate bill will basically be the template for health insurance reform.

Given all the twists and turns of this debate, I’m sure there still will be some important changes (even though holdout Sen. Ben Nelson has been promised a “limited conference” in exchange for supporting it). But today’s announcement does strike me as a turning point in the debate. It’s time to reflect on a growing divide between “realists” in the Democratic party and more idealistic progressives.

Democratic Divisions

Ed Kilgore of The New Republic describes the divide over the Senate bill as follows:

[O]n a variety of fronts (most notably financial restructuring and health care reform, but arguably on climate change as well), the Obama administration has chosen the strategy of deploying regulated and subsidized private sector entities to achieve progressive policy results. . . . [T]his is not the same as the conservative “privatization” strategy, which simply devolves public responsibilities to private entities without much in the way of regulation.

[I]n the health care reform debate, the Obama administration pursued legislation that utilized regulated and subsidized private for-profit health insurers to achieve universal health coverage. This approach was inherently flawed to “single-payer” advocates on the left, who strongly believe that private for-profit health insurers are the main problem in the U.S. health care system. The difference was for a long time papered over by the cleverly devised “public option,” which was acceptable to many New Democrat types as a way of ensuring robust competition among private insurers, and which became crucial to single-payer advocates who viewed it as a way to gradually introduce a superior, publicly-operated form of health insurance to those not covered by existing public programs like Medicare and Medicaid.

Now that the public option compromise is apparently no longer on the table, and there’s no Medicare buy-in to offer single-payer advocates an alternative path to the kind of system they favor, it’s hardly surprising that some progressives have gone into open opposition . . . . To put it more bluntly, on a widening range of issues, Obama’s critics to the right say he’s engineering a government takeover of the private sector, while his critics to the left accuse him of promoting a corporate takeover of the public sector.

Glenn Greenwald is one of the most forceful progressive voices on the issue, offering a multifaceted indictment of dominant Democrats’ coziness with a series of corporate interests:

The health care bill is one of the most flagrant advancements of . . . corporatism yet, as it bizarrely forces millions of people to buy extremely inadequate products from the private health insurance industry — regardless of whether they want it or, worse, whether they can afford it (even with some subsidies). In other words, it uses the power of government, the force of law, to give the greatest gift imaginable to this industry — tens of millions of coerced customers, many of whom will be truly burdened by having to turn their money over to these corporations — and is thus a truly extreme advancement of this corporatist model.

One finds this in far more than just economic policy, and it’s about more than just letting corporations do what they want. It’s about affirmatively harnessing government power in order to benefit and strengthen those corporate interests and even merging government and the private sector. In the intelligence and surveillance realms, for instance, the line between government agencies and private corporations barely exists. Military policy is carried out almost as much by private contractors as by our state’s armed forces. Corporate executives and lobbyists can shuffle between the public and private sectors so seamlessly because the divisions have been so eroded. [links omitted]

If one judges the bill purely from the narrow perspective of coverage, a rational and reasonable (though by no means conclusive) case can be made in its favor. But if one finds this creeping corporatism to be a truly disturbing and nefarious trend, then the bill will seem far less benign.

Chris Hedges concurs (in his book Empire of Illusion), dismissing “proposals to require insurance companies to use more income from premiums for patient care or link payment with reported quality” as “unworkable.” He favorably cites physicians John Geyman and Steffie Woolhandler, who think health reform as it now stands is a doomed effort to keep a failing system on life support. Yet many on the left are standing behind the Senate bill, embracing it as what Sen. Harkin called a “starter home” with a good foundation for future additions.

Realism and Idealism in an Increasingly Ungovernable Nation

There has been a lot of talk about a Niebuhrian “Christian realism” in Obama’s foreign policy–a willingness to deploy force and otherwise questionable means to accomplish worthwhile ends. The health reform bill strikes me as another iteration of these endlessly complex, ethically ambiguous moments. The political opposition to the public option has been so intense that those pursuing universal coverage have been forced to bargain with (and even become identified and intertwined with) the very entities they are trying to force to act responsibly. In this topsy-turvy world, where an anti-system opposition refuses to responsibly deal with problems that most developed nations addressed decades ago, Democrats and the Obama administration must cut deals with moneyed interests (whose influence over politics grows apace as a “conservative” judiciary continues to gut campaign finance regulation).

But abstractions can only go so far in describing this bill. I just want to give a counterintuitive spin to two bits of journalism on health reform, to prefigure what I’m sure will be months and years of unintended consequences (some good, some bad) flowing from this bill.

1. Pilot programs: Atul Gawande has pointed to a hodgepodge of pilot programs in the Senate bill as one of the best reasons to support reform efforts. Like many physicians, Gawande is attracted to the organic development of “best practices” in cost control, instead of top-down imposition of a general theory:

Where we crave sweeping transformation . . . all the current bill offers is those pilot programs, a battery of small-scale experiments. . . . The bill tests, for instance, a number of ways that federal insurers could pay for care. Medicare and Medicaid currently pay clinicians the same amount regardless of results. But there is a pilot program to increase payments for doctors who deliver high-quality care at lower cost, while reducing payments for those who deliver low-quality care at higher cost. There’s a program that would pay bonuses to hospitals that improve patient results after heart failure, pneumonia, and surgery. There’s a program that would impose financial penalties on institutions with high rates of infections transmitted by health-care workers. Still another would test a system of penalties and rewards scaled to the quality of home health and rehabilitation care.

Other experiments try moving medicine away from fee-for-service payment altogether. A bundled-payment provision would pay medical teams just one thirty-day fee for all the outpatient and inpatient services related to, say, an operation. This would give clinicians an incentive to work together to smooth care and reduce complications. One pilot would go even further, encouraging clinicians to band together into “Accountable Care Organizations” that take responsibility for all their patients’ needs, including prevention—so that fewer patients need operations in the first place. These groups would be permitted to keep part of the savings they generate, as long as they meet quality and service thresholds.

The bill has ideas for changes in other parts of the system, too. Some provisions attempt to improve efficiency through administrative reforms, by, for example, requiring insurance companies to create a single standardized form for insurance reimbursement, to alleviate the clerical burden on clinicians. There are tests of various kinds of community wellness programs. The legislation also continues a stimulus-package program that funds comparative-effectiveness research—testing existing treatments for a condition against one another—because fewer treatment failures should mean lower costs.

There are hundreds of pages of these programs, almost all of which appear in the House bill as well. But the Senate reform package goes a few . . . steps further. It creates a center to generate innovations in paying for and organizing care. It creates an independent Medicare advisory commission, which would sort through all the pilot results and make recommendations that would automatically take effect unless Congress blocks them.

None of this is as satisfying as a master plan. But there can’t be a master plan. That’s a crucial lesson of our agricultural experience. And there’s another: with problems that don’t have technical solutions, the struggle never ends.

I agree with all of this, but I want to add one more dimension to the “neverending struggle”–the very interest groups that are supposed to be reined in by pilot programs are likely to do their best to alter, influence, or limit those programs over the coming years. One need only look at the sad and convoluted history of gainsharing pilot programs (merely adumbrated here) in order to get a sense of how, as the “rubber hits the road,” various lobbies will be storming veto points in order to undermine experimentalists’ efforts. This is not to say that pilot programs are a sham–I am about to publish a book chapter with the subtitle “A Plea for Pilot Programs as Information-Forcing Regulatory Design.” I just want to temper the technocratic optimism at the heart of Gawande’s worldview with a touch of the skepticism driving progressives like Greenwald and Markos Moulitsas.

2. Cuts in Medicare Home Health Care: Now here is an aspect of the bill that I at first felt offended by. Doctors, insurers, hospitals, and pharmaceutical companies all appeared to be making at most modest concessions in the final bill. But home health care, staffed by some of the most vulnerable workers, was to be slashed. If anything appeared to fit the Greenwald storyline of rapacious private interests shifting public burdens onto the unfortunate, it seemed to me, these cuts would fit the bill.

Yet once one digs in a bit to this story, more complexity emerges. According to one of the speakers on this podcast of the Diane Rehm show, over half of the “extraordinary patient” payments in the program are made in Miami-Dade County alone. It’s hard to get upset with a long overdue crackdown in the Ponzi State. Many other apparent abuses were mentioned in the podcast, as well as in this discussion on the NYT website. After sorting through all the commenters’ underlying empirical data, I may still come back to my original diagnosis of brutal, bareknuckle pluralism as the driving force behind home health care cuts. But I can’t justify that level of cynicism currently.

Concluding Thoughts on the Tragic Dimensions of Moving Forward

The personal is always political, and rarely is this more the case than in health policy. As with abortion and the draft, the law of health care financing directly impinges on the body of the citizen, determining fundamental opportunities for individuals. Despite all of my reservations and disappointments, in the end I am for this bill for a very personal reason: I cannot imagine how my family would have afforded treating my mother’s ailments over the past decade without the private and public insurance she has continually been covered by.

Earlier this year, I had hoped to be a larger part of the academic legal debate on health reform. But my mother broke her back in early September after falling off a scale in her bathroom, and I am her primary caregiver. Attending to her has taken up much of my free time since then. It’s hard to explain how much pain this incident has caused her, and how it has disrupted her life. All I can say is that I cannot imagine how stressful this incident would have been if she were one of the 46 million uninsured. Without question, her 3 weeks in the hospital, four weeks in rehabilitation, and related care, would have bankrupted her (and nearly bankrupted me). Millions of people may end up in such a situation–without coverage, battered by fate, and broke–if progressives in Congress stand on principle (or dubious constitutional arguments) and torpedo the bill.

Nevertheless, I also realize that this immediate victory, like 2009’s stabilization of the financial system, may be a Pyrrhic one for the Democratic Party. It entrenches the power of one more sector of America’s overweening FIRE industries (finance, insurance, and real estate). I’ve recognized the potential of private insurers to rationalize health care, but that potential is rarely realized. I am very worried that just as “GM hired a thousand lawyers, and Toyota hired a thousand engineers” in response to the Clean Air Act, private insurers will plow new revenues attributable to an individual mandate into endless lobbying to hollow out the terms of “minimum creditable coverage.” They will certainly devise clever tricks designed to drive away the 5% or so of the population that accounts for 49% of medical expenses. If pervasive regulatory capture occurs, the “reform” will be an albatross around the necks of Democrats for years.

“In their determination to avoid Harry and Louise, they’ve become Thelma & Louise.” That’s the verdict on the Obama Administration from a Democratic strategist tweeted by horserace reporter extraordinaire, Chris Cillizza. Although it’s a characteristically snide and smug observation from The Village, I think this bon mot has some chance of coming true. Like most of the conventional wisdom excrudescing from Beltway pundits, it’s less a reflection of reality than a narrative our entrenched political class enacts. The “politics of reform” will be endlessly refracted in DC media celebrities’ halls of mirrors, where a 24-hour news cycle is always hungry for “backlash.” The lazy conventional wisdom has already coalesced around a narrative of Obama-as-Icarus, perpetually mistaking his cautious incrementalism as a seamless web of socialism.

The real tragedy here lies in a struggle for the soul of the Democratic party–between idealists like Greenwald, Hedges, Woolhandler, and Kos, and the DLC/Brookings “realists” who’ve dominated the official Democratic response to the financial and health care crises. The sclerotic Senate’s supermajority rules have put the realists in the driver’s seat, and idealistic progressives have been left with little more than the power to refuse the bill that Reid & Co. craft. Idealists want an FDR-style rejection of what TR called the “malefactors of great wealth,” and they also want to see the millions of Americans without health care coverage given some semblance of a safety net beyond the bankruptcy courts. But we cannot have both. As Martha Nussbaum writes in The Fragility of Goodness (speaking generally about such quandaries),

We are considering [a] situation[], then, in which a person must choose to do (have) either one thing or another. Because of the way the world has arranged things, he or she cannot do (have) both. . . . He senses that no matter how he chooses he will be left with some regret that he did not do the other thing. . . .

Aristotle speaks of a captain who throws his cargo overboard in a storm in order to save his own and other lives. The man sees all too well what he must do, once he grasps the alternatives. . . .And yet he was also attached to that cargo. He will go on regretting that he threw it into the ocean–that things turned out so that he had to choose what no sane person would ordinarily choose, throw away what a sane person would ordinarily cherish.

By passing this reform bill, Democrats will jettison whatever “populist” credentials they once had, opting instead for an early-twentieth-century “progressive” vision of technocratic alliance between corporate and government experts. However many disastrous missteps the FIRE industries make, this is the only arrangement that the media will credit as responsible governance. We’ll commence an endless argument (read: notice and comment rulemaking and subsequent administrative adjudications) over what constitutes an adequate baseline of coverage, what is the fair share of revenue for middlemen like insurers, and what regulatory infrastructure can best vindicate the entitlements (and impose the burdens) specified by the bill. But the fundamental victory of reform–the national commitment that no one should have to choose between death or bankruptcy when confronted with a serious illness–will also endure. The tragic paradox is that the Democrats can only achieve this great cultural and ideological victory by becoming identified with the very interests that only they are willing to confront.

New Breast Cancer Screening Recommendations Cause Controversy

Rarely do medical recommendations or clinical guidelines receive such immediate and passionate attention as those released this month by the U.S. Preventive Services Task Force (USPSTF), an independent panel of doctors and scientists who make recommendations to the Department of Health & Human Services.  In a striking detour from prior recommendations by the Task Force and those of the American Cancer Society (ACS) that women over 40 receive a mammogram every one to two years, the Task Force now recommends:

• “against routine screening mammography in women aged 40 to 49 years”;
• “biennial screening mammography for women aged 50 to 74 years”;
• “against teaching breast self-examination (BSE)” (emphasis added).

In a radio interview on the new guidance, Dr. Bruce Calonge, chair of the Task Force, was asked about the USPSTF recommendation against routine screening for women in their 40’s and “the possibility that some women may die as a
result of not having routine mammograms.”  Calonge’s astonishing answer:

“what women really need to understand in that decade is that overall reduction in mortality, which is for all comers in that age group, only about 15%, because breast cancer is relatively rare in that age group, that benefit is really quite small…”

Although he claimed that cost analysis had no place in the Task Force’s recommendations, later, focusing on early detection generally, he repeated,

“I think one of the things that is important to say… that mammography’s benefit is only a 15% reduction in mortality.”

Kathleen Sebelius, HHS Secretary, has clarified that the federal policy on breast cancer screening has not changed, despite the Task Force’s recommendations.   In response to concerns that patients who seek mammograms before the age of 50 would not be covered by health insurance, Sebelius stated that she “would be very surprised if any private insurance company changed its mammography coverage decisions as a result of this action.”  Despite such assurances, if past experience is a guide insurance companies will use these criteria to determine coverage.

A number of professional and advocacy groups have responded to the Task Force’s November 16 recommendation.   The ACS continues to recommend annual screening using mammography and clinical breast examination for all women beginning at age 40.  The American College of Radiology issued a frankly titled statement, “USPSTF Mammography Recommendations Will Result in Countless Unnecessary Breast Cancer Deaths Each Year” and labeled the recommendations “cost cutting.”  And the American Congress of Obstetricians and Gynecologists continues to recommend a screening mammography every 1-2 years for women aged 40-49 years and every year for women 50 and over, as well as to recommend BSE.

So what would the task force’s mammography recommendations mean for patients?  The changes to the recommendations extend beyond the age at which they recommend beginning mammography screening.  For example, the 2002 USPSTF recommendations explained, “[t]he precise age at which the benefits from screening mammography justify the potential harms is a subjective judgment and should take into account patient preferences” (emphasis added).  The elimination of the term “preferences” and the focus on “patient context” and the “patient’s values regarding specific benefits and harms” indicates a move toward evidence-based medicine, whereby a patient’s inclinations and personality are taken less into consideration or play a less significant role in predicting outcomes.  In a November 17 New York Times article, the author asks,

Are you the sort for whom shivering in a paper gown, enduring discomfort and waiting a week for results is so unnerving that you are thrilled for a decade-long reprieve? Or are you that woman who gets an extra breast sonogram with your gynecologist even when it is not medically indicated? Do you trust scientists or prefer your own gut?

These concerns seem more like preferences than medically-supported decision-making factors.   The 2009 recommendations instruct that “the patient’s values regarding specific benefits and harms” be taken into account — but do not explain how far “patient context” be considered.  The recommendations do not apply to women with “known underlying genetic mutation or a history of chest radiation.”  Beyond these two exceptions, how will doctors and patients make individual decisions to start regular, biennial screening mammography?  The recommendations should be appreciated for confirming — to an extent — that the decision to begin regular screening mammography is individual.  The doctor and patient, in collaboration, should consider the patient’s risk tolerance, family history, and any other applicable factors.  Sebelius recommends that patients “[k]eep doing what you have been doing for years — talk to your doctor about your individual history, ask questions, and make the decision that is right for you.”  It is unclear how the Task Force’s recommendations could affect the decision to begin mammography in an educated and reasoned way.

The Task Force’s self-examination recommendation is also worrisome.  The USPSTF states that “there is moderate or high certainty that [BSE] has no net benefit or that the harms outweigh the benefits.”  However, discouraging the use of self-examination — a short, free, easy, and non-invasive process — might seem astonishing to many, particularly those who have known someone for whom a BSE has been the means by which breast cancer was first discovered.  Appreciating the concern about BSE leading to higher incidences of biopsies, additional screenings, and false-positive test results, with the increasing focus on disease prevention, this recommendation seems, at best, counter-intuitive, particularly when taking into account those who are uninsured and may not pursue other methods of breast cancer screening.

Communication and Transparency: An Answer to Our Health Care Woes?

This past week, I had the good fortune to attend two fascinating but very different — in terms of content and setting– talks by preeminent health experts.  The first was by Princeton University Professor Uwe Reinhardt at a Woodrow Wilson School of Public & International Affairs alumni event, entitled “The U.S. Economy and Health Care: Implications for Health.”  Professor Reinhardt spoke briefly and generally on health care and insurance reform, touching on the necessary changes on both the “demand side” (insurance reform) and the “supply side” (health care delivery). The second talk was by Dr. Atul Gawande as part of the New Yorker Magazine’s 10th Annual festival, entitled “The Death of the Master Builder: A Story of Risk, Medicine, and Skyscrapers.”  Dr. Gawande’s talk, in which he expounded his 2007 New Yorker article The Checklist, argued for the implementation of a basic 19-item surgical checklist, citing a marked reduction in complications from surgery (the World Health Organization’s 2009 Surgical Safety Checklist, implementation manual, and Guidelines for Safe Surgery are all available online).

Despite addressing very different issues, I took away from these two talks a very important message: little can be accomplished in fixing our broken health care system without communication and transparency, with which come increased accountability and discipline.

While addressing the changes necessary on the health care delivery side in order to fix health care, Professor Reinhardt called for “[g]reater transparency on, and accountability for, the use of resources and outcomes.”  As an example of such transparency, he cited his proposals as chair of the New Jersey Commission on Rationalizing Health Care Resources.  In its January 2008 report, the Commission recommended to Governor Corzine that New Jersey require that nonprofit hospitals’ governance documents– IRS form 990s (including financial reports and submissions), board composition, and meeting minutes– be made available to the public on the entities’ web pages (for-profit hospitals routinely post their annual financial reports and submissions to the SEC on their websites).  Such full transparency would ostensibly lead to increased accountability on the part of managers of non-profit hospitals by allowing the public insight into their finances and economics.

In his talk, Dr. Gawande focused on the fact that one of the most useful aspects of the checklist is the introduction step (”Before skin incision, the entire team (nurses, surgeons, anesthesia professionals, and any others participating in the care of the patient) orally: Confirms that all team members have been introduced by name and role.”).  According to Dr. Gawande, this simple introduction fosters discipline because when everyone knows their roles and fulfills their designated functions, coordination and trust are increased — and both are very important when time is short and the stakes are high.

Of course, these calls for increased communication and transparency are nothing new — and they pervade almost every aspect of health care reform and improved medical delivery.  For example, this summer, Tim Jost espoused the benefits of the public plan, but noted that no research comparable to the data that has emerged from the Dartmouth research group on variations in health care spending “can be done on the under 65 population because private insurers regard whatever data they have to be proprietary.”  He hopes that “a public plan could make anonymized data available to researchers and be open with its subscribers about coverage and utilization policies.”  Likewise, just last week, in his “Principles for the Homestretch” for health reform, Frank Pasquale called for more competition and transparency in insurance markets.  Moreover, appeals for greater communication and transparency, and, in turn, accountability and discipline, is indicative of the larger movement to the medical home model, which “provid[es] comprehensive primary care… that facilitates partnerships between individual patients, and their personal  physicians, and when appropriate, the patient’s family.”  Increased communication and sharing of information across health care providers has been known to reduce adverse drug-drug reactions, lower medical errors, and bring attention to alternative care possibilities.

It is important to note that increased communication and transparency is not a panacea for all of our health care woes — particularly without balancing openness with ways of addressing privacy concerns.  However, as I gleaned from the talks by Professor Reinhardt and Dr. Gawande, the evidence speaks to the value of a policy of openness in many aspects of health care and medical reform.

CBO Wrong on Health Care Reform Cost Numbers

Just as opponents of  the current Health Care Reform plans often cite reports from The Lewin Group, which, as we posted the other day, turns out to be wholly owned by one of the Nation’s leading insurers, UnitedHealth; they also cite to recent reports by the Congressional Budget Office (CBO) as to the relative fiscal impact of the various plans. Although the CBO does not seem to be owned by UnitedHealth (though recent statements by the CBO (as made clear by Professor Frank Pasquale here) they are certainly susceptible to being labeled “partisan” for exceeding the scope of their role), CBO is prone, it seems, to being wrong.

Professor Pasquale’s post, “Politicized Prognostication at CBO,” details and quotes a number of experts who have expressed grave doubt as to the methodology of the CBO as well as the resultant numbers. For example

Bruce Vladeck: “The CBO’s track record in predicting the effects of health legislation is abysmal. Over the last two decades, the CBO has routinely overestimated the costs of expanded government health care benefits and underestimated the savings from program changes designed to reduce expenditures.

Mr. Vladeck, Maggie Mahar, Timothy Jost, Frank Pasquale and Timothy Westmoreland have more company for their doubts regarding the CBO’s numbers.  The rather politic but wholly effective Commonwealth Fund reports that

Over the last 30 years, the Congressional Budget Office (CBO), which assesses the costs of health reform and other legislation as it moves through Congress and is widely respected for its competence and integrity, has underestimated the amount of savings and overestimated the costs that major changes in the health care system would bring, says Jon Gabel in an op-ed published in today’s New York Times.

Drawing on Commonwealth Fund-supported research, Gabel, a senior fellow at the National Opinion Research Center of the University of Chicago, analyzed CBO’s forecasts of three major changes in the Medicare program relative to their ultimate outcomes.

What he found was alarming:

In the first, in the early eighties, Congress adjusted the way in which Medicare would pay hospitals-under the new law paying a fixed amount per admission based upon primary medical condition. “CBO predicted that by 1986 total spending would be $60 billion. Actual spending in 1986 was $49 billion.”

That’s $11 billion on 60. That’s wrong by more than 18%.

In the second, Commonwealth Fund reports that Gabel “found that savings from the Balanced Budget Act of 1997, which changed the way skilled nursing facilities and home health services were reimbursed under Medicare, turned out to be 50 percent greater in 1998 and 113 percent greater in 1999 than the budget office forecast.”

Wrong by 50% and by 113%.

In the third, Commonwealth Fund reports that “CBO predicted that drug prices would rise following the Medicare Modernization Act of 2003, which added prescription drug benefits to Medicare, estimating that spending on the drug benefit would be $206 billion. Actual spending was nearly 40 percent less than that, Gabel found.”

Wrong by nearly 40%.

Combining the error rates for the two years stated in regard to the Balanced Budget Act of 1997, that’s three major Health Reform changes with an average error rate of  more than 46%. That’s nearly half. Wrong by nearly half.

According to the Commonwealth Fund,

Gabel explains that when CBO analyzes initiatives aimed at reducing costs, it requires considerable evidence that similar previous policy changes have saved money. When there is a lack of historical examples, the “unknown” variable often becomes zero. The task for the budget office becomes even more challenging when it considers the impact of more than one change simultaneously-changes that might have synergies.

Considering that we are entertaining unprecedented Health Care Reform which relies upon  the manifold synergies of numerous changes for cost reduction, the CBO process which ascribes a numerical dollar value of  zero to that which is new, seems particularly ill-equipped to assess the fiscal impact of the proposed changes.

The Commonwealth Fund reports that

Gabel observes that underestimating savings that can come from cost-control initiatives in Medicare and throughout the health system could undermine efforts to pass health reform legislation. “As Congress now works on its greatest push for health care reform in generations, the budget office needs to revise the methods it uses to make predictions about costs,” he says.

Failing the methodology revisions requisite to make the CBO’s estimate’s  of cost reduction a valid measure of fiscal impact, the least they could do is preface their lofty and dire pronouncements with an accurate disclaimer: “Historically, Give or take, roughly 50%.”

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